“I don’t want to exist in this body” I feel this so hard. I think how it would be so nice to take a vacation from my body. Just not feel all the crap for a little while. Yeah.
My husband has recently developed tinnitus after his 2nd covid shot and I feel this so hard. I have watched him suffer from anxiety and mania and it is terrible. It is like watching a person be tortured by a sound that never goes away. Please don't give up hope. Keep going and take it day by day. If you need to rest then rest. You must be so exhausted. Just the fact that you never gave up and kept searching for an answer is so motivating.
"take a vacation from my body" I literally said that today, I have a lot of weird symptoms that we have no answer or cause for, and today all of them decided to show up at the same time! It was really awful and I wished I could just get out of my body for a couple of hours but I couldn't, so I had to keep focused, stay calm and manage them one by one, starting by most dangerous and going thru until the only annoying ones. It's exhaustive, but we gotta do what we gotta do to go through today, because tomorrow is unsure lol
Im so sorry. I feel that so hard. I suddenly developed tinnitus 5 years ago after waking up from a surgery that had nothing to do with anything near my head. It drove me crazy when I was trying to sleep and all I heard was the ringing, or when it would start out of nowhere and overwhelm my ears. It still does quite often. Now I have to sleep with noise, like rain sounds or anything that will get me to focus on the sounds instead of the ringing. I hope he finds a way of coping with it and I hope it's only temporary cause I know how much it sucks.
I agree so so deep with you. I can’t say it any other way yet now maybe never. I’m so sorry we feel such extreme things and we don’t deserve this. . I Hear you so loud and clear sweet Jo💜 I’m just sorry 😢 we are in this kind of predicament. You are so loved. I hope you have more better moments that not in life. You know you are NOT @ fault here. It Suks! But you are a Good person Jo! 💜xo
Doctors often don't realize that there is a real value, to patients, in having an accurate diagnosis. Partly, of course, it enables us to keep an eye out for new or unknown treatments if we want to -- and partly it's just plain validating to our experience of having discomfort and pain and difficulties in living life.
Doctors have, in large parts, become drug pushers more than anything so as long as they can prescribe you whatever drugs, they get paid for it so it's in their best interest to have you without a specific diagnoses so that they can keep on prescribing you all kind of medication........
Absolutely. Doctors can’t understand how validating it is as well as the fact that any diagnosis opens the options for accommodations, insurance-covered medical aides and so much more.
Before I was diagnosed with ADHD, someone (not a doctor) asked me why I would want to know what is wrong with me. Why would I want to put myself into a box? Maybe because I wanted to know what has defined my life and impacted me hugely in a negative way? Maybe?
We all need the support of this group because dealing with an invisible or chronic or incurable illness is extremely difficult and frustrating, but it also sucks that we need to have a support group so that we know we aren’t alone. Unfortunately there are still doctors and people in the medical field that can’t be bothered to actually listen to their patients and run tests and whatever else is needed to try to discover the diagnosis or underlying causes of the symptoms. Granted the car accident that was the root cause of many of my issues was before the MRI and CT scanner wasn’t invented yet, but my symptoms were a giant red flag that was repeatedly missed leaving me repeatedly misdiagnosed as the spinal cord injuries would suddenly start getting progressively worse during the only pregnancy that I was able to carry to term. When I started having severe pain and troubles standing and walking I was told it was normal for some women during pregnancy and it would go away after giving birth. It didn’t go away. I moved to a different state and had to find a new doctor. He was ok at first,until I went to him because the pain, muscle spasms,trouble walking and standing was getting worse. He would repeatedly tell me that I just needed to lose weight and exercise more. All of which I was trying to do. Because he couldn’t or wouldn’t do anything I started going to a chiropractor who helped a little, but also made it worse. I had to buy a rolling walker for safety reasons especially because I was a teacher who worked with kindergarten and first graders. I couldn’t take it anymore and I was sick and tired of him implying that it was all in my head and I was lazy and was the stereotypical fat person who binged and over ate which is the complete opposite of me. After praying and asking for strength I stood up to him and demanded that he order an MRI which he didn’t want to do and fought me on making the process much harder and embarrassing me by sending me to the local hospital where my weight prevented me from getting the MRI done. I had it done on Friday March 12 and on Tuesday I received a call from his office telling me that I had an appointment with a Neurosurgeon later that week. I was blindsided because I hadn’t heard from my doctor. So I had to ask the staff person what the MRI had shown and she was shocked and angry that he hadn’t called me personally with the results. It definitely showed that it wasn’t all in my head and I wasn’t lying or being lazy. My spinal cord was impinged and being crushed in between my vertebrae in 4 places and the nerves were being crushed and cut off which was causing the numbness and severe pain in my arms, hands, legs, and feet. According to my Neurosurgeon I shouldn’t have been able to stand up let alone walk with the location and the amount of damage shown in the MRI. He couldn’t believe that I was even functioning at the level I was with the amount of damage shown. I had my first spinal surgery days later. After the surgery he told my husband and I that the damage had actually been even worse than what the MRI showed and that I had been one wrong move away from death or becoming a quadriplegic on a respirator for the rest of my life. My ex- doctor tried to make a joke out of it because if I had listened to him I probably wouldn’t be alive. Because the accident happened 20 years prior to the first surgery my Neurosurgeon couldn’t guarantee that the pain would go away completely and I might still have areas of numbness and that I would have full reversal of my symptoms and the damage could still be permanent. I did pretty well for 6 months and then the pain and some other symptoms started returning. More tests and another MRI showed that I was having trouble in the areas above and below the areas he had repaired and it appeared that my spinal canal was too narrow and I essentially had a tethered cord. 2 spinal surgeries done back to back in a 10 hour surgery would correct the problem but it required fusing my vertebrae starting at C2 and going down to T3 in addition to widening my spinal canal and my spine is now fused on 3 sides. And that is only a tiny bit of my crazy journey that is filled with so many crazy and unbelievable diagnosis’s and life threatening health issues one after another.
Well said! That sums it up so perfectly. It's tough belonging to a club that nobody ever asks to join. Reconciling oneself with the situation though is the beginning of finding peace with it, despite the pain. I find that people don't or won't accept that if they have never been there, some even see it as giving up, but fellow 'spoonies' understand. (CFS & Fibro here)
YES! That's a great answer! I think sometimes we're not meant to be all the way healed because God has a plan to bring us together in a particular place, where as we might not otherwise have ever met. Yes!! I love this!😁👍❤
Getting my fibromyalgia diagnosis helped me feel good about prioritizing my self care, about rationing my spoons, and about making career choices that were motivated by my health and not my desire to stand out at class reunions. I'm glad to hear you're starting to give yourself grace too. Hang in there!
You don't know how much this means to so many people. To hear someone talk about these feelings so openly is so validating and so important. Thank you!
“I’m just tired”. I have said those words so many times myself. Having a chronic illness is eye-opening. I hope that you can find some cadence that keeps you relatively comfortable. Much love
I have EDS and can relate to that feeling of knowing that you’re most likely always going to be in pain one way or another. My grandma also has EDS but wasn’t diagnosed until after me, when she was 76, so I’ve been able to see what undiagnosed and untreated EDS looks like in older age and it’s scary. The constant pain she’s in is so hard to see. I wish I could give you my physical therapist because she works with people with chronic pain and teaches them why it happens. It really helped me when I was first diagnosed. I’m wishing you all the best♥️♥️
I have EDS too. My grandma seems to be the farthest back we can trace the symptoms to. I always got yelled at by my grandma for my joints because she didn’t want me ending up like her. Turns out it is me. My dad has it mildly but my one aunt is the type who will herniate at the drop of a hat. My other aunt has fibro but it may be a misdiagnosis after all of the connections my family has made.
My mum and sister have eds too. My mum have been told Al her life until that day it's all in her head to it's because you are a woman yea it have been crazy she thought it was just her then my sister got the diagnosis and the Dr wanted to see our mum and when she got her diagnosis she said it's okay since now she know it's not all in her head
@@JS-dv9ji according to my EDS doctor, who is a zebra herself, told me right away when I had said I was diagnosed with fibro that fibromyalgia is the number one misdiagnosis for EDS.
Me too…. I was only diagnosed really, this year. Last year my doc brought up EDS but I didn’t think I really had it as I have just always thought all my medical issues and pain etc was “just who I am” and I just had to push thru…., ask me how well that has worked….
Another zebra here. For me my granddad was where it prob came from. My dad and two of his sisters have it. My grandad was in a lot of pain but was hyper mobile enough at 80 to put his legs over his shoulders. He lived with so much pain and had issues with the meds affecting his heart. I’m 34 now and it’s been a challenge to have things become so much worse with age.
My oldest daughter has fibromyalgia and when you said "I don't want to exist in this body" she said that's how I she feels often. Incurable illnesses suck and as much as having ones myself sucks it sucks even more knowing my child deals with having incurable illnesses. It's definitely not something I'd wish on anyone else.
I keep telling the people to build me an android body to upload myself into because I do not like this meat prison. Fibro plus a lot of other stuff. If I could get rid of pain and a digestive system, that would definitely be a step up. I still want to be me, so I don't know how to pick and choose the brain stuff to get rid of while keeping myself. But the meat stuff can definitely take a hike. I can't, ha!
I was diagnosed with Fibromyalgia over 18 years ago. I KNOW HOW YOU are feeling! I have tried many things over the years. Some work, some do not, but I have some insight and I am here if you EVER want to chat or have questions. Many people do not understand this syndrome so they don’t know how to help or respond. I am here for you, Jo!
I have lived with multiple chronic illnesses and chronic pain for decades. I think your response is typical and normal. The answer is you get through one day at a time. Every morning is a new day, a new challenge, a new blessing. Know you are not alone. We are warriors and we fight each battle as it comes. Sending love and hugs your way.
As you mentioned and have been learning: Chronic conditions can teach us a certain Grace. Chronic pain disability (and shifted abilities) has been teaching me Grace. Parkinson's, as my dad recognized, taught him a certain Grace. He became much more in touch with and expressive of his emotions. He also wanted a different body. When it became difficult for him to get his legs to walk, one time I was about to go to their kitchen, "Dad, can i get you anything?" I offered. "Would you like something?" /"Yeah!" Dad replied, "I'd like a new body!"
I bought two electric blankets last fall (one for the bedroom and one for the living room) and it was the best money I've ever spent. A huge heating pad with a fuzzy soft cover! Highly reccommend!!
Epsom salts may help too. Dr Teals are my favorite. I have RA, not fibro - but joint pain often led to muscle pain. Relieving some of the muscle pain helped quite a bit, even though it was a secondary issue
I feel fortunate to have moved into an apartment building where there are several women with fibromyalgia. Two of my besties have fibromyalgia. Most of the time if 1 of us having a high pain day, 6 out of 7 us will be having a high pain day. B and I are one of only a couple 40-something women in a local urologist's practice. B is well read on the subject. I also have lupus (SLE), CRPS, and several other painful conditions. People with FM sometimes get some relief with Lyrica, gabapentin, Savella, or Cymbalta. I am just tired. Sick and tired of being sick and tired. There isn't a support group locally. If there is one near you, I recommend checking it out. Some are better than others and, of course, some will have a better fit for you. Being around others with it on the daily, has been helpful and validating. I was diagnosed 26 years ago.
I know it is unlikely. But in the unlikely case if you are taking omeprazole (or another proton pump inhibitor), discontinue it for a time being and see if it helps. I had a horrid reaction to the medication which was the most textbook fibromyalgia one can ever imagine. Turned out, it was a rare side effect of the medication. Some other medications are also known to cause fibromyalgia like symptoms. If you are on any prescription meds, I would carefully read insert to see if muscle pain is listed as a possible side effect. Additionally, I would search in google scholar to see if there are any documented clinical cases or research (using key words of your medications and muscle pain). That's how I figured out about my omeprazole reaction. This made me wonder whether my reaction was indeed rare or if some people may just not make the connection. I found documented clinical cases of omeprazole causing muscle breakdown. That's how I figured it out about my omeprazole reaction. I would be interested to see how common this might actually be since so many people take proton pump inhibitors as well as some other meds known to cause muscle pain. scholar.google.com/scholar?hl=en&as_sdt=0%2C3&q=omeprazole+rhabdomyolysis&btnG=
I was diagnosed at 18 with Fibromyalgia, I completely blanked it out, refused to believe it. Unfortunately the doctors and specialists were no help at all. I was told to keep seeing pain specialists only to constantly be told there is no solution or cure. I gave up by the time I was 22. I felt like I was fighting a loosing battle. Even with being diagnosed doctors didn’t believe in that diagnosis, I felt like I was constantly talking to a brick wall. I’m now 25, have been living with chronic pain for 15 years and finally this last year I have been coming to terms with how my body functions, I’m starting to fight again, try to get help and finally, finally trying to live life again to the best of my ability. It’s hard, but I’m determined to get whatever help I need but at my own pace. Thank you Jo for putting this all into words. Showed a few friends this video and I think finally they understand me just that little bit more!
I will always be on antidepressants for the rest of my life, unless some miracle breakthrough happens. I loathed my medication, often skipping it because that was the only control I thought I had. In response, I ended up in the ER multiple times for suicidal thoughts. I finally realized how lucky I was that I had access to medications that help save my life. I’ve been doing great ever since. I had to give myself permission to accept I wasn’t going to be status quo, and even on meds I have limited abilities at times. I had to give myself permission to not be what everyone, including myself, wanted to be and just accept who I am. And honestly, I’m a pretty good guy and there are days I’m blessed enough for others to see it. Jo, you may not ever be the person you felt destined to be, but give yourself permission to be you to the best of your abilities. Some days may bring more success than others, but to most of us on your channel, we are blessed to see you for who you are.
I relate to this so much. I not only have a depression diagnosis but I also have a PMDD diagnosis that exacerbates the depression. I had to hit rock bottom to figure out medication would be a lifetime endeavor
@@kellybertling4744 I have a feeling I have PMDD too, and already have a depression diagnosis :,) I've been on birth control for ages now, because I just wanted it to stop (I skip the placebos to manage my symptoms) glad to know I'm not alone
@The End antidepressants work. I have multiple chronic soft tissue pains. Each one a known diagnosis. Antidepressants help me since 2014: Combatting "The Pain Drain." Their lift and mental shifting helps. Antidepressants (for me just basic Zoloft and a medically well-known social anxiety reducing good side effect of Tramadol, one of my pain reducers.). They also helped free me from Thinking too much /distrusting my intuition. Basic (generic) Zoloft also helped my mom in her later years and my dad who had Parkinsons.
Totally feel this. I was diagnosed with Gastro Paresis in my last video. Not being able to eat enough calories in a day is tough, and knowing there is no real cure is even tougher. Just gotta keep on keeping on. Stay strong!
I have a different condition with some similar symptoms, and it definitely suckssss. I'm glad I was able to finally get on a diet that works for me though.
This is so hard to deal with. I have CRPS and I've learned that grief is cyclical. You have ups and downs. You need to allow yourself to grieve the person you used to be, the future you wanted, and the pain that you will have for the rest of your life. Treat it like the loss that it is. Like pain or energy, we will have good days and bad. A good therapist who specializes in people with chronic pain will help. False hope will lead you down a very dark path. Learn to be realistic about what the future holds. A magical cure that will make you feel 100% better? Unlikely. Some combo of medication, activity, pacing, etc that will get you to a better place than you are now? Totally realistic and doable. When it comes to the pursuit of "getting better" I take breaks. A person can only go to so many fruitless appointments, try so many medications that don't do anything but give horrible side effects for so long. I take a few months off, sometimes even a year at a time (mostly while waiting for specialist appointments) every so often. My GP and therapists have been very supportive of this. I usually will put a time limit on the break - say 3 or 6 months. Both your body and mind need a break every now and then. Best of luck to you, thanks for your content :)
I'm learning more about CRPS and am starting to believe I have that in addition to Fibro. It would explain some things that Fibro doesn't. What type of specialist should one see to get any type of testing done for it? tia
@@redfly5937 Usually ortho, podiatrist, pain management. I highly encourage getting in contact with Dr. Rhodes. drrhodes@vecttor.com. Gentle hugs from a fellow warrior 🧡🔥
Jo, it sounds like, from the outside, that you are processing grief. I am so relieved to hear that you are able to recognize when you need time for yourself. What ever you are feeling is valid and you have to process it in the best way for you. 💜
👋🏻 Fibromyalgia here, too. My symptoms started at a similar age to you and I was diagnosed at 32. I’m 40 now. I’m glad to hear you able to just be with your emotional responses. FWIW, I think that beginning your thinking in this way - how can you pace yourself and prioritise what is actually important to your well-being - is exactly the right thing to do. The truth is that whatever medications and therapies you choose (or not), you will still need skill in pacing, boundaries, and self care. If and when you get to the point of considering treatments, I’m happy to share my experiences.
I know how you feel. I was diagnosed with axial spondyloarthritis 6 years ago. The first thing I felt was relief. Relief that I have a name for what's going on. I imagine you initially felt the same. After that I went through the grieving process, and from what you've said it sounds like you're going through similar. It's a lot to process! Glad you are taking the time and have the awareness to process it all properly. So proud of you ❤
Reminds me of how I felt when searching or answers (at 36(F) turns out I have Autism). That I will always be in pain, will always be low energy, will probably never be able to stick with a journal or learning Korean or hold down a job or keep my house clean, will always have anxiety and panic attacks before visiting family etc.. So I’m happy that all the troubles, difficulties, oddities, have a name that I’m “not crazy” I’m hoping that it will be something that will get me to stop beating myself up over things I can’t do. And on the other hand I’m pretty sure that this has solidified my mothers anti-vax views. Thanks for sharing, all the hugs.
Yes! I have a piece of my brain missing which often has similar symptoms to ASD so I relate very deeply to your story ♡ thanks for sharing! After years of psychotherapy I'm slowly coming to the realisation I will never be "normal" and that SUCKS but like Jo said, it is forcing me to Prioritise the things I do care about and let go of the rest.
Accepting my pain has helped me so much. Like I'm not gonna stop trying stuff, but accepting that this is where my life is now is so helpful. I'm not giving up, but pining after a reality that'll never exist is just gonna cause me more pain.
My wife has been dealing with chronic illness secondary to Lyme disease for years. So many tests, so many procedures, so many specialists, so many treatments and diets and exercises and meditation and and and… Coming to grips with “making peace” with a chronic illness, especially one that’s “invisible” ( how many times can one hear “but you don’t look sick”) is a never-ending journey. You’re entitled to feel all those emotions, and never forget that “no” is a complete sentence. Listening to you is soooo similar to the conversations between my wife and I. Thanks for the honesty and the reminder of the vital importance of advocating for yourself in your health care.
Also, I have days I cry because I know this is my life with fibromyalgia. Like you are saying it will never be better. I recently quit my job and left the career I had been working towards for years but I just couldn't do it anymore. I choose to have 1 child because I know I cannot physically handle another. But I try to find happiness. Because this is my one life. Gentle hugs. 🦋🦋
I am 69 and have lived with fibromyalgia and chronic fatigue and all that that entails for many years. You are so right to say that it is so difficult to accept that this is your life from now on. I went into a deep depression and actually grieved the loss of my health and many dreams for my future. My husband couldn't cope with the limitations that my condition placed on our lives. We were divorced 8 years ago. It's probably for the best since the fibro and cfs have progressed. I have learned to understand and accept that this is my life. Many folks have illnesses and health problems that they deal with and fibromyalgia is one of them. It's a very frustrating and maddening disease! Sending love to you and all the fibro warriors out there. The struggle is real! 💜
Thanks for your content. I'm not a disabled person, nor a person with a crónic illness or pain and this chanel help me so much to understand the complicated feelings that goes with those things. It helps me be more empathetic, more likely to be pacient with strangers or even with myself if in the future I would have to deal with any of that. I dont know, It feels like it helps me to grow as person and that makes me happy. I hope that you can get througth this breakdown as fast as posible and that you wont have to confront this ideas too many times more.
You should know that you can be a voice for anyone dealing with incurable/chronic health issues. You are so in touch with what you are feeling, you can put into words exactly what we struggle with. I thought of this video this morning as I walked my dog, feeling honestly pretty awful while I did it. I thought of the times that I have felt, as you expressed, that maybe it's time to accept my limitations & allow myself to NOT do some things. The picture of me in my comfy chair, sipping tea, reading War and Peace can be very appealing. Then, as I finished my walk by going further than I had planned--my dog insisted!--I felt proud, healthy (and sweaty), so for today I was glad I pushed on. Which is the "right way" to feel?? I think there is a time for both. I do spend a lot of time in that comfy chair, but if something in my mind or body tells me I can do more, I give it a try. Sometimes I get halfway to the park & turn around & go back to my chair, & you are absolutely right about giving yourself permission to do that with no guilt. I wish you & anyone in this situation peace & happiness in whatever you do! Sorry so lengthy, but I guess you sparked something--please, keep it up.
You're always so great with the way you put things, Jo. I was diagnosed with fibro at 19 and I'm 25 (nearly 26) now and still processing. It's a long grieving process and definitely comes and goes just like you've described. Periods of time where you just get fed up and try to find a solution, periods of hope, periods of grief and anger and depression. Side note fibro-specific depression is definitely a thing and it took me a few years to notice I had it. It's a tough diagnosis and it takes a long time to come to terms with and I don't know that you ever really do. You just learn to live with it more and enjoy the moments when you're feeling better! Everyone will have an Opinion on what to try but it's your body and sometimes being on nothing/trying nothing feels better than trying stuff because you get off that constant rollercoaster of home vs disappointment. You also get better at reading your own body and knowing the sorts of things that trigger flares. You're not alone in this and it makes me feel less alone too to hear you talk about it ❤️
You are in good company dear. Been living with fibro for over 20 years now. We still managed to raise 5 wonderful kids, all adults now. Stay home mom, various part time jobs as my body allowed. Finally retired and I’m still kicking! Very gradually slowing down now, reasonable to expect at 60😏.) You get to take your time doing this, no hurry, not a stop sign, just a detour (life is normally full of those anyhow). So since you’re rerouting treat yourself by taking the scenic route whenever you can. Literally and figuratively. Partners benefit from learning ways to manage your symptoms and budget how you plan to spend your energy each day. Lots more resources and helpful pointers available now than when I was first diagnosed. Be kind to yourself. Avoid overbooking yourself. You can easily adjust methods as needed. Create even more ways to streamline and simplify chores etc. (I bet you’re already more familiar with that than most folks). You got this!
Having an accurate diagnosis is extremely important so your brain doesn’t go off in creating multiple stories according to how you feel on any given day. No one wants to have a disease that has no cure, but it is best to give your symptoms a name that will guide you to what to expect and how to handle your symptoms. I have been diagnosed with fibromyalgia as well as several other autoimmune disorders for close to 40 years. There are good days and not so good days. The important thing is that I understand better the symptoms, what triggers them, and also what to do when having a rough day. We all have to deal with different issues, such as physical, emotional, mental, or social circumstances. We just have to be aware that those circumstances don’t define us. We define how to handle those circumstances. I love your attitude, and this attitude will help you move through the difficult days and enjoy fully the days that you feel better. All of us have limitations of some sort. Chronic conditions bring the blessing of making us humble and gracious of he good and bad times. Hope you are doing better and that life is more enjoyable these days.
I'm SO SO proud of you for saying that you're going to do what you want with your limited energy and time. You DESERVE to choose to do what you CAN and to be gentle with yourself and NOT push. I LOVE hearing you say, "Maybe now I've done enough." **hugs**
Jo, I resonate so much with this. Last year, I was diagnosed with two incurable condition, and oh boy it has been a rollercoaster of emotions. Knowing that there are words cor what is wrong and treatment options and others experiencing the same issues has been so helpful to me.
I was diagnosed about 15 years ago with Fibro and at first I was so happy to have a word to describe the craziness I felt in my body. But as the years have gone by, I've learned how to accept what is. I have days I can do, and days I can't. I'm a realist. I had t o give up the anger of what I was unable to do. Now at 57, I'm at peace with that now. I recognize my flair ups and take care of me. I understand everything you are talking about. Just because you can't " do life" the way you imagined, doesn't mean you can't live the best life for you . Sending you positive thoughts and healing energy. 🥰😘
I have an incurable illness. For now, it’s on the shoulder of the road. I’m so grateful to be there now. One day, the pain & fatigue will be right in the middle of the intersection of my life. I enjoy each day & will fight it fiercely until it’s time for a change.
I have fibro. It is a lot. Some days I feel normal and capable, and other days it is exhausting to exist. Pain is a daily thing but I've found ways to manage and minimize it. I appreciate how you've phrased so much of this!
I have both fibromyalgia and chronic fatigue syndrome, I was diagnosed with CFS in November 2006 and with the Fibromyalgia in May 2007. I found that I had to grieve for the life I wanted before I could accept my life as it is. It took a while, but I have got to that point. I know it seems daunting. My top tips are to learn how to plan, pace and anticipate. Also, accept that you will have to write off some days as bad days. For example, we were meeting friends on Sunday, so I knew i would not be capable of doing much on Monday. We are off to see my brother and his family next weekend, which means a 5 hour drive and 3 nights in a budget hotel. I always start planning the packing early as that is the part I both hate and procrastinate over. I will be resting next Thursday, and pacing myself as best I can leading up to it. I will be doing a little bit of packing every day, and keep a notebook with my lists. My plans for the days after we come back are just to rest up. The journey back will be hard going as we are calling in on family in Birmingham on the way home (I am in the UK). There are some great Facebook groups that are really supportive, my favourite is Fed Up with Fibromyalgia. That one is worldwide, but mostly American sufferers. The lady who runs it is lovely. Give yourself time to process it all. Stay organised, and be kind to yourself. As with most things, there isn’t a one size fits all solution. Like many others, I use heat for pain, but I also use a tens machine for my lower back pain. Microwave wheat bags are good as they stay hot for longer, or an electric heat pad can be good. A heated blanket in winter is good too. Also, don’t be surprised if you find winter harder than spring and summer. I flare more in the winter. There are lots of birthdays and occasions for us, so I think the stress accelerates a flare. Take care, and be kind to yourself xXx
I’m a young person who fought so unbelievably hard for a diagnosis, trips to the Mayo Clinic, so many doctors, hundreds of tests. Eventually I was given the fibromyalgia diagnosis and I felt like they were wrong so I spent more time and money looking for a different diagnosis. Years go by and I was still told it was fibro and I felt so defeated. Now I married and have a toddler. Life has been HARD. Pregnancy was HARD. Being a mom with such a disorder is HARD. Truly, just existing is HARD. I’m sending my love to you because I know exactly what you’re going through. It’s the hardest shit, and it’s even harder when it’s an “invisible disease” and others don’t really see what you’re struggling with. I still have hope that someday I will get better, but right now it sucks. We’re strong, we’re capable, and we are tenacious. We got this!
This video is so validating and I completely understand. As someone who only got some level of a diagnosis 3 years ago after 15 years of dealing with issues, I have accepted that there is no "cure". I may very well feel this way "forever" and my friends and family may have to continue to worry about me. I may have to spend a lot of time laying down or in a "comfortable position." I may have to see specialists and take pain management medication "forever." And I have accepted it. I wish you peace as the waves of grief continue as time goes on. You have to choose to make peace multiple times and you will.
I’m currently in the process of getting doctors to confirm my suspicions of fibromyalgia. I’m glad people are talking about it. Accepting that pain, discomfort and exhaustion is something that will always be there with you if very difficult and I think people often don’t understand what it really means and how daily it’s a massive struggle. I’m in a position where I want to be diagnosed with it so I can prove to all the gross people in my life who’ve always told me I’m just exaggerating or that it’s just because I don’t sleep well or I don’t move enough blah blah that regardless of what I do I will be in pain. Plus I really want to have some guidance on how to manage it better. We got this, sending love to you and your body 🥰
Sending lots of love. Personally, I'm still in the progress of trying to find an answer, overwhelmed with constant doctor's appointments and referrals. I just want to know as best I can what it is and what I can do about it in fear I would else later find out it "could have been better" if I'd looked into it. This video is a good reminder for me that there may be no answer or even if there is, it may not change much.
I was just diagnosed with Lupus at the beginning of June and when I say, you put into words exactly what I've been feeling--ESPECIALLY about the part of saying No...I want to be done feeling obligated to going to things when I just can't. I know it's going to take work, but I need to not go to these functions especially when they could trigger a flare.
I’ve been at it over 20years dealing with this. The aggravation for me is each day is different because parts of your body hurt differently at any time day or night. It’s a struggle no one except another person with it would understand. I understand your whole perspective.
I have a rare chronic neurological sleep disorder (idiopathic hypersomnia) which causes excessive daytime sleepiness, extremely prolonged nighttime sleep (up until 16h), brain fog and much more. You constantly feel exhausted, like someone who hasn't slept for 2-3 days, just on a daily basis. It is really hard to accept that life basically consists of work and going back to sleep, so I feel for you. I have learned a lot from other people with chronic disabilities on how to accept my illness and I'm trying to have a positive outlook on life. I'm sending many hugs your way - you're attitude and videos have helped me a lot as well. Just remember that you're not alone in this and that we are thankful for the joy you bring us
Thank you for sharing. I'm 25, I've had fibro more than 20yrs, and I'm still coping with the fact that it's never going to be fixed. I'm always in pain, from my skin to my bones and organs. It causes several things to flare up and to make average problems into really bad medical issues. It's given me chronic pancolitis and acid reflux, it's made my HPFS worse, it caused my "insignificant" bulging discs to paralyze me for over a year, and most days my energy in inefficient. What I've learned is that I need to take things one step at a time, even if that means hour by hour. I may not always have good days, but I've learned to appreciate them, savor them. Because there is no guarantee, but there is always a light. You find ways to modify. I have little bins in every room in my house with things like water, a heating pad, a notebook and pen (brain fog), earmuffs (hypersensitive hearing), glucose meter, blood pressure cuff, and a Tens1000 unit with rechargeable battery. I have one of these baskets in every room so that I don't have to go around my house just to get something. OH! And gel eye masks in the fridge, I have maybe 5 on rotation.
"Giving myself permission..." Yes! Good for you, I had the same mindset when I finally got and processed my own Fibro & hEDS diagnosis. Allowing yourself to change pace, shift down a gear, learn better self-care. It's important, with or without a diagnosis! (Sidenote: my little 3yr old cat has just become an amputee. Some [expletive] shot her in the leg with an air rifle. So naturally that reminds me to check up on your channel! She's doing well and yes, police have been informed.)
I can feel the sadness, the (maybe) anger, the lack of hope and I can ABSOLUTELY understand and know exactly how you’re feeling. And know that there is nothing one can say to change that, to take all that bad stuff out of our minds. But know that you’re existence have been bringing a lot of good to some people. I understand you, you’re not alone. Lots of love for you 💕
I'm sending all my love and support! I have hEDS and finally got a diagnosis in March and while I was pretty sure I was gonna be in pain forever, and my current level of health is likely what will be what I'm like forever... It being confirmed is always a smack in the face. I got to a point where I acknowledged I was fighting a losing battle, and that using accomodations, working part time etc aren't BAD THINGS. It's just a fucking nightmare and there's often no "positive spin" which makes it harder but often it is possible to live in harmony (or at least acceptance) of your body on most days. I hope you find some peace in your situation ♥️
I know from my own experience with an incurable disease, I have been set free by ceasing to fight & accept my life as it is-not that it always will be that way, but that it’s that way right now..it’s given me tremendous emotional, physical & mental space I didn’t know was being consumed by constantly fighting & rejecting what my body has told me is our lot right now. Sending you so much love & strength & liberation through letting go..for now❤️
So glad you have a diagnosis! I recently had a doctor give me a diagnosis with the “I’m sorry that there isn’t much we can do for this problem.” I told her to not be sorry, that actually having a diagnosis takes off so much pressure. Fibro definitely changes your life, but as I have received several chronic illness diagnoses I decided I could sit and cry, feeling sorry for myself, or I can accept my life and learn what can help me find joy. Following your journey with your amputation and working through trauma has really helped me in learning to accept who I am and to try and find joy in small things. 😁
I am 31 and have dealt with my body taking things/ability away from me since I was 13. I knew I had some form of arthritis, but I finally got my diagnoses of spondyloarthritis and fibromyalgia only two years ago. I am literally sobbing watching your video because this is how I felt when I got my answers. And I still feel this way. My partner is encouraging me to apply for handicap parking and it's so hard to verbalize why I am so vehemently against it, I don't want my illnesses to take another thing from me. Thank you for verbalized how I feel.
I hear you, Jo. I'm in a similar place with CFS, I got diagnosed quickly but spent eight years believing I would get better and following various programs promoting that idea and have this past year realised I need to actually deal with what is happening and with the possibility that it could be permanent or at least go on a good deal longer and its a totally different thing, even though I've been dealing with the illness all this time. It's rough but hopefully moving me forwards in many ways. Glad I found your channel today. Wishing you well.
Another great video that I can really relate to!!! My wife has had chronic pain for over 30 years. She was diagnosed with fibromyalgia over 20 years ago, which is what they seem to do when they can't find anything wrong with you. It's another way of saying "It must all be in your head!". She also has chronic pain from a fall 30 years ago. And is 100+ pounds overweight, only making the problems worse. She currently needs neck & back surgery, but she is way too overweight for anyone to agree to take the risk with surgery. She turned 60 yesterday and is basically mentally and physically shot, and probably has been for a few years, she just keeps pushing thru. Our 22 year old son ALSO has mysterious chronic pain, AND he gets daily migraines. He can't work because he has too many days where he's nonfunctional. He was told more than a decade ago it must all be in his head because they couldn't find anything wrong. Any meds they've offered only make him feel worse!! He's been dealing with this most of his life, which doesn't do much for his mental health. Mental illness is also prevalent on both sides of the family.
When you have constant pain it’s horrible. I have a disconnected shin bone and have pain. No where near what you live with but it took docs a long time to figure that out. It’s refreshing to hear someone to talk about their life candidly like this. You are awesome! I love hearing about the things you have to deal with. I love seeing that there are other stubborn people out there who refuse to ask for help sometimes even though we need help. Keep sharing with everyone. It’s helping so many people. You are so amazing and I’m glad I stumbled across your Chanel because your stories are inspiring.
Thank you for making this video I have fibro too and seeing other people talk about it makes me feel so heard, I got diagnosed at 19. I had the same experience with doctors telling me that it probably won’t get better. I was misdiagnosed with rheumatoid arthritis due to symptoms presenting in a similar way and received treatment for it and had terrible side effects from medications used for RA because I didn’t have the condition. I’m 21 now and I am feeling very frustrated and stuck as well. Give yourself compassion because as hard as it is, over exerting yourself won’t help. Take one day at a time. I had to leave my original career path because of fibro as it was a very physically demanding job but you can learn to live with this and adapt to the changes you may have make because of it. My life is different than I expected but that doesn’t make it any less full or happy. Fibro is hard to live with at times but I have learnt to make the most of the good days I get and really value them. Thank you for talking about fibromyalgia there are more of us with you than you know
After being diagnosed in 1986 with FM.... it was not, at that time, considered a "valid" illness by mainstream, and did not have many resources. I too have pushed myself far beyond common sense concerning my health and abilities... including work, tasks, and living up to other people's expectations of what my life should be like. I immediately dove into problem solving mode, searching for "the cure". It wasn't until I let go (many, many years later)... stopped trying to justify my symptoms, physical difficulties, and illness to myself and others... and started doing what I needed to manage symptoms, remain mobile, stimulate healthy mental well-being, take advantage of rest, and surround myself with peace.... did I actually start getting better. Denying myself the truth, trying to live a lie... created so much negativity and anger. Once I truly started living my truth... I started feeling alive again, and began loving life again. Yes... I'm still in pain and exhausted all the time. I still have up's and downs, still have good days and bad days..... but I'm living and enjoying life on my terms now. Thanks Jo for your honesty!🤗😘💕
Wow...thank you! You have so perfectly put into words what I have been going through with CRPS. No one I know has any real idea as to what I deal with on a daily basis,...even though I have tried to explain it to them. I sometimes feel that they don't really believe me. I am going to share your video with them, so that they might better be able to conceive why I am no longer the person they have always known me to be in the past. Getting a diagnosis like this changes a person. I have had to cut out of my life those that were bombarding me with toxic negativity. And also those that were spewing toxic positivity.
As someone who has chronic pain, I can definitely say that one of the best things you can do to manage the pain and have MORE good days is to toss out the pressure to live a “normal” life. Do what works for you and don’t give a crap about what anyone else thinks. Showering often makes my body aches worse so I use a lot of dry shampoo and sponge baths if I’m not up to a shower, and never worry about showering daily, and feel SO much better. That’s just one example. Acceptance is scary because it can feel like giving in and wallowing, but the reality is that it will open the door to peace, which is HUGE for managing chronic pain of any kind. The other thing that helps so much is studying the mind-body connection and getting a good therapist who can help with the journey. The medical side of chronic pain is just 50% of the game - managing the toll it takes on your mental health is the other half. When your mental health suffers, the chronic pain gets worse. Strengthening mental health and dealing with any unresolved grief and trauma helps tremendously with chronic pain, and in some cases even put it into remission. 💜💜
I reinforce everything you've said. I have sensitivities and reactions to the traditional medical treatments for FM. I've found best results with homeopathy, clean eating, BodyTalk, osteopathy, energy medicine, yoga, meditation, and swimming.
Your journey to diagnosis is so much like my own. I actually mentioned fibromyalgia in one of your previous vlogs about your hospital appointments. Thank you for speaking so openly about how you feel, there is a stigma associated with fibromyalgia because so many people are still unaware it exists, or don’t understand the severity of it. Much love to you, from one fibro warrior to another 💜 xx
"Hope is programmed into us" I love this! Rest, girl. Just rest and refresh and if you want to search more down the road then do it, but it's not giving up to give yourself a season of resting from searching and doctors. I've been there and I needed that year to just breathe. Just breathe. ❤️
From a fellow fibromite that was diagnosed 14 years ago but has had problems for many years before that, I feel you! The hardest lessons I've had to learn is to be gentle on myself and to let go of those people who just can't bring themselves to understand; all of those that get fed up of you cancelling plans because you just can't function that day or the ones that constantly tell you to "pick yourself up" and at times even the ones that constantly ask "Have you tried this?" ... honestly I wish I had a £1/ $1 for everything I have tried, I'd have a good old spending spree. It's tough living with this condition, the constant pain, the next random symptom that shows up & you wonder if you should get it checked out or not because you get fed up of medical staff either dismissing everything or hearing "You'll just have to learn to live with it" for the 100th time - it's exhausting! But please don't give in ... please allow yourself to explore the extent of your capabilities & find purposes that may be much different than what you may have ever imagined because it's worth it - you're worth it!!! Sending much love fellow fibro warrior, keep fighting the good fight xx
All of that sucks. I also have fibro and am trying to learn how to go on existing. I on gabapentin muscle relaxers and I use your lidocaine cream a lot that has been extremely helpful! Thank you for showing it to me. But I don't know how to deal with this either. I don't know how to do ok with this. I don't expect you to have any answers. But hearing you talk about all the things that I go through does actually make me feel less alone. I don't know and haven't found anyone else in person or online that makes me feel more heard then you. I will always thank you for sharing. And sorry we are in this shitty life together
I also have fibro and after a while you start to accept it. Sometimes you have bad days and you try to reject it. But, it does get easier, not the pain but, acceptance gets easier
I pretty much had all the risk factors for developing fibromyalgia and on top of it, I am positive for general joint hypermobility. Now I have to be careful on what work I want to take on. Funnily enough, my old boss from my previous job was not surprised on the fibromyalgia diagnosis. Guess she saw the signs in me because she also had lived experience with fibro. Sometimes I don't notice I am in pain. But then I realize I am always in some degree of discomfort. I mean...I feel like ibuprofen and tylenol are candy to me at this point. However I know it takes the edge off. Only stuff that works decent is Toradol, which is near opiate/opioid level pain control despite being a strong anti-inflammatory in the NSAID family like ibuprofen is.
I completely understand this whole thing. I also got diagnosed with fibromyalgia a couple years ago and I felt and still do feel all of this. It’s also really hard for the people around me who understand but also don’t because they don’t have this constant pain. Sending love and spoons 💕
I have MS so understand. Lots of pain meds later, I found ginger tea to be some much help. Momming with migraine in Canada turned me onto it. It helps with pain and focus. Invisible chronic syndromes is our community. Energy is a high priority for us. It does teach us to take care of us as a high priority.
I've had systemic lupus for 26 years and fibromyalgia for 10 plus a list of others. Acceptance is a hard thing. Losing your health is a grief. You go through the same stages. Every new diagnosis added comes with grief. It never gets easy.
You speak my truth. I have an autoimmune disease and have experienced a decade of trying to find a way of being the productive and pain free person I used to be. Accepting this isn't going to be is difficult, to say the least. My husband of 28 years couldn't accept this and decided he wanted a wife who could still go and do like I used to. Having an incurable chronic disease, especially one that causes pain, changes your life. Having just one day a month without pain is a blessing. At this point in my life, I question if that one random day a month is enough.
What you're describing sounds to me like getting older and facing mortality as much as making peace with a debilitating illness. I went through some very dark times a few years ago, very different from your experience but equally soul-crushing, equally debilitating, equally exhausting. Your words about being tired ring true on a profound level that people who still live in their youth cannot understand, by definition of being young. When I came out the other end of my own troubles, what I realized was that my old self was gone, and that the life ahead of me was not going to be the life I planned or hoped for. But it will be ~a~ life, and that's the new hook to hang one's hopes upon, I think. Wishing you strength and new horizons.
Hey, welcome to the fibro club! I have felt so many of these feelings and after 10 years of diagnosis (diagnosed at 15) I have found coping skills. CBT has been helpful. Praying for you, internet friend ❤️
I have chronic migraines and fibro as well. I know your pain. I know your mental anguish during those days when you want your body to be able to do what a "normal" person can do, and how it is especially difficult as a formerly active and athletic person. I feel you girl! Im right beside you on your journey. Lookimg forward to more videos from you regarding this...I've been dealing with fibro since I was 22ish....I'm now 37 and I still am learning about it!
I am on this journey with you! I was diagnosed with fibromyalgia in April and am struggling so hard with this lifelong illness. Thank you so much for sharing and making me feel less alone.
I love how you can put things into words that I myself have felt so deep in my soul. I wish that I could express myself these kinds of things to those who love me. The anger comes and goes, some days you'll just be really mad that this is what cards you've been dealt. I hope that you can find something that will help. And thank you for being here and talking with us
I related to everything you said here so deeply. I started having symptoms as an adolescent, and I was finally diagnosed with fibromyalgia in 2017. A few months later, I was also diagnosed with CRPS (complex regional pain syndrome). I wanted answers so badly but getting them was both a relief and absolutely crushing, since there's not much to be done about either thing. It's also tough, because other people in my life don't believe that either diagnosis is real, that there is anything wrong with me. These aren't diagnoses that can easily be "seen" or shown in a lab test, so my family doesn't want to hear about it. I am just lazy and want drugs, apparently. It's SO MUCH to process, especially when others don't support you. My husband was very overwhelmed when I was diagnosed, because he had really been holding onto hope that I could be fixed, and he got very angry that I chose to accept my diagnoses and the fact that they're permanent. He really tried to be supportive, but I could tell how he was really feeling. I understood it. I wanted to be "fixed" too. I wanted my old life back. It's just not my reality, and I can fight that and be angry all of the time, or I can find acceptance so I can move forward with whatever limitations I have. Chronic pain/illness is already miserable...if I allow it to make me completely unhappy, then what? Then I really lost everything. I still have sad days of grieving for my old life, but I don't feel like that everyday. I hope you are doing better now with processing your diagnosis. I am really sorry to welcome you to the fibro club. 💜
Hi. First time I have ever come across your channel. This was an amazing video I am 63 years old I have fibromyalgia I have chronic fatigue syndrome. And I'm going to tell you it does not go away for most people. And yes it's stinks it sucks it's the worst. There are many times that I just would rather be dead. Because I don't know when I'm going to feel good enough to do stuff. So bed is my best friend most of the time. I've had this since I was 24 years old. The good news is you can stop going to all the doctors I know I did it too for many many many many years and then I tried every remedy in the world. I can think of none that worked. This is not to bring you down or be negative. This is to say you can let go of going all the doctors you don't have to keep trying treatments you can just find out how to find joy in your particular individual life. God bless you hang in there. I understand and so do many other people.
Jo, you may not consider yourself this, but you are a blessing to people. That does not mean you have a responsibility or obligation to people, especially your viewers. Just listening to you and knowing how you live your life has given me some peace and understanding of my existence in the world.
I finally got a fibro diagnosis after several years of telling doctors about these 'electric pains' I get out of nowhere, that could last for seconds or hours, that can be sudden and extremely sharp or dull and achy. I was always told "you're young. Lose weight. Don't worry about it. Don't be lazy" and then I almost cried when my new rheumatologist said "hey does this hurt?" "Yeah?" "Yeah it's not supposed to hurt I think you have fibromyalgia." I told him I had thought so for years. I told him my past doctor told me it was a garbage diagnosis which didn't mean anything. I told him I have too much pain for it to be from my arthritis, and how I always wanted to just push through it. Everything you're saying about pushing through and minimizing symptoms hits home with me. I am so sorry you're going through this, but I'm glad a diagnosis has been made, and I hope it opens doors to appropriate treatment. Fibro absolutely sucks.
My wife has it and has hurt for no apparent reason. One of my wife's md called it an invisible disease. I have witnessed it for 24 yrs and have seen how it affects her . But she powers forth and lives with it. Her attitude is the main thing, and she lives on as cheerful as she can be
Mike, thank you from the bottom of my heart for trying to understand, for trying to be there for your wife, for sticking by her no matter what. I know she truly appreciates you deep in her heart, even some days it might be difficult for her to convey this to you. 🤗 My husband decided that FM was changing his life too much, cramping his lifestyle, and he left. You are one in a million... thank you.
I truly understand your frustration with this. I was diagnosed a number of years ago even though there was and is very little treatment for it. When I switched to a new doctor, he asked me if I wanted to have. Of course I said no. Then he said, "Then you don't have it!" That left me feeling very confused. I guess his thinking was that if I didn't have that diagnosis then I would dwell on how I felt, but I've never understand that for sure. Needless to say, I switched doctors. In all of this, the symptoms never changed of course. So I've just learned to pace myself and do what I can to manage things. I hope you have better luck with your doctor as you work through this. Sending gentle hugs!
I never fully understood what it meant when people said that health is all we have, until I got an autoimmune disorder. Someone can have everything but if they don't have good health, they sometimes have nothing.
Wow. When you talked about being soul-crushingly tired... that resonated. I'm stuck on the road to diagnosis for some problems I'm having following a car accident early last year. No one knows why what's happening is happening or why treatment ideas so far haven't helped (and some have only aggravated things.) Between the advice from friends and family, the continued appts- that I've largely had to handle alone b/c PANDEMIC, the weight of being/having a problem, and the actual physical pain, etc...I'm. Worn. Out. Saying "I'm tired," doesn't fully convey how reduced to nothing I feel. Thank you for this video. I might share it with a few of the louder people in my life who are trying to help but who I'm kinda avoiding because I don't have enough energy to chase down every stray idea.
I'll keep saying this to anyone and everyone here: if you need someone who "gets it," PLEASE REACH OUT. I'll happily send along any of my contact info you'd like to reach out on. Just having one person in your corner who "gets it" can be such a help to your mental health. Knowing you're heard, understood, 'not crazy,' that your struggles are valid, etc is a huge thing for those of us who deal with these types of incurable/genetic/neurological/etc. problems.
You might look into MCAS. I could never understand how injuries or illnesses could be such a domino effect and it explained my whole life, even tho it’s largely still a mystery/most docs are useless about it
I have fibromyalgia too. Onset for me was 17yo, diagnosis at 19yo. I'm 31yo now and I feel really at peace with my body. It takes time. For me, gabapentin and nortriptyline brought me time to breathe and process. I have been on and off meds over the years and things fluctuate depending on how life is going generally. The solution is to find peace with it, and I believe that you will. It takes time, it's a grieving process. The first few years were the biggest emotional and mental weight on me and I really struggled to be OK during that time, I was quite self sabotaging honestly. Be gentle with yourself for the time being because it's a rollercoaster at the beginning. You will get to know your new world view about your body and that intimate knowledge and understanding brings some peace and acceptance. Good luck Jo, keep on keeping on.
You are a brave and obviously intelligent young woman. I hope you’re able to learn how to manage your disease. I have a friend who has it, and when she realizes she has done too much she just stops and withdraws from whatever she has on her calendar. I hope you’re able to do that. Thank you SSSSOOOO much for telling us about Abridge. I never heard of it, but what a great app!!! My husband and I are in our 70’s and it’s going to be so valuable when we go to doctor appointments. Bless you, dear. Take care.
I relate to this so much. I was diagnosed in 2014. And I went through the same thing. I was so tired. I felt helpless. I didn’t want to live like this. It had a name. But it didn’t really help. I grieved for a long time. So please prioritize you. Do the things that make life feel right. You won’t always have good days but the bad days get manageable. But learning to forgive yourself for resting helps a lot
I was diagnosed with Amplified Musculoskeletal Pain Syndrome (basically juvenile fibromyalgia) in January, and have felt everything that you’ve described in this video. My rheumatologist suggested going to a pain clinic several states away, but I kind of have a hard time feeling like there’s a point. I have a lot of family history that says I’ll never get better, and nothing seems to help, so trying all these new treatments feels just so exhausting. However, your channel has been really helpful to me over the last few months, and I’m so grateful to have found it.
I appreciated this video a lot. I went through almost 4 months with random symptoms and tons of ER trips and miss diagnosis and in the end they did find a severe staph infection in my body so thankfully there was a solution to that but it was months of being told to just continue therapy and that the symptoms would eventually leave. I didn’t have to go through that for years like you did but the months that I was mentally gone after already going through a full stroke in June I can only imagine how hard that was to go through given only 4 months on my end was exhausting because I was so sick from other causes. Thank you for sharing
I so feel you! I don’t have all your other struggles, but I do have fibromyalgia. What helps me to a little extent, is LDN, low dose naltrexone. It takes the worst peaks of my pain, and increase my energy level just a little. But I still have chronic pain, flare-ups and fatigue. And I do need to rest more than most people, to be mindful about what my body tells me, what I’m not able to do. Another thing that helps a little, is warm baths, therapeutic PT in a warm pool, sitting in an infrared sauna (that I purchased), using heating pads, a vibro-massage-mattress, getting massages (when done right, at a professional massages studio), to mention some stuff. If you can be bothered to try more. I totally get it if you feel that you have tried so much, that you’re tired of testing yet another thing… You could also look into CBD if that is legal where you live. Best of luck, whatever you choose to try out or not!
Wow. This is so dark, but also uplifting at the same time. Jo recently showed up as a suggestion for me on RUclips, and I have been watching loads of videos ever since. I love Jo’s ability to articulate what she’s going through, and she has such an awesome mix of serious and light hearted content. My wife has a bunch of health issues that are incurable, often leaving both her and me exhausted, so I can relate on so many levels. Jo: should you ever be interested in visiting Germany, please get in touch!
This speaks to me on so many levels. I've been living with a chronic illness for just over a year (CFS/ME, for the record) and I relate so hard on the "I don't like this, I don't accept this, I'm pushing myself too hard to try and resist it and thereby do more harm than good" feeling. It wasn't until recently when my health has taken a pretty sharp term that I really began to recognize how different my life is now. It's hard to come to terms with, and I'm glad you vocalized that. I don't want to give up, but man, I also don't want to do this anymore.
When I was diagnosed with MS, I forced myself so much to be "positive" that I didn't adress what my actual feelings were. I remember being so proud that I hadn't cry one single time. And you know what? I should have let me cry, because if you don't cry when you're diagnosed with an uncurable neurodegerative condition, then when are you supposed to do it? There are moments when is ok to be sad. It hasn't been until this year, three years after the diagnosis, that I have started to work with a psychologist in actually adressing what was going on (I was in treatment briefly after the diagnosis, but the moment things got a little intense I quit) and only because the suicidal thoughts started to get pretty scary
have a couple of decades on you, but was diagnosed with that myself, along side hypermobility when I was a teen. it is a difficult one to deal with, but be you. at the end of things keep your attachements to people, a mistake I made a long time ago, listen to your body and keep it in as reasonable condition as you can, but dont over do it too much, again I let myself go and regret taht. with me as long as I dont take my bad days out on others I think I am not doing too bad, but it is tricky at times (and when someone pushes too far it can be tempting to use them as a relief valve.... but I try to resist taht). your videos already will help some others with these issues, but can be useful sometimes if there is a medical school to see if you can help with their training of doctors, to help both educate them on seeing the zebra in the herd but also what it is actually like from the patients side of things. for example they have a normal expectation of pain and response, which we dont have, as your Kidney infection demonstrated very well, and it can be a real eye opener for them to learn. good luck with finding what works best for you, it could be a nice hot tub to par boil your pains away after you push too far, but find something nice if you can it helps. (have often said I need an office hot tub not a better office chair)
Having support when you do go through some very dark periods is very important. I've lived chronic severe pain for 25 yrs. There have been some dark days. Sometimes just connecting with a friend that has similar interests has helped pull me out of it.
I feel for you ❤️ I’ve had Fibro for 12 years now, starting at 20 years old, and it took me 31 years to get it under control. It feels like that Survivor challenge where you’re balancing in the ocean on top of a wooden stake. For ever. I found I maintained my sanity by not believing them when they said it was forever. And it really had improved, for me, with diet, exercise and careful lifestyle balance. I know it doesn’t work the same for everyone, but to anyone else with Fibro, Low Dose Naltrexone and CBD oil changed my life. It’s a hard journey, but it makes you better, and you really can live a life really close to normal
Managing my fibromyalgia is a constant struggle but since knowing I have it it has helped me to accept more aids like using a wheelchair when having to walk long distances or needing more time to rest. It's hard to know that it will possibly never go away but I do feel like I can allow myself to have hard days and knowing does also allow me to look into how I can have a better life with the pain. I hope you will find your own way to manage this in a way that works for you!
I don't want to compare my mental issues to your struggles with a nd restrictions you have due to your body but listening to you really helped me with my mental issues right now and for this I want to thank you. Just 3 weeks ago I learned I have ADHD (the inattentive type) and besides having c-ptsd I still struggle a lot with lots of things in daily life. Being almost 40 and finally having a diagnoses and explanation for so many things I know also feel like I can stop fighting against myself and finally learn how to work with those things as they are here to stay (whether I like it or not). Until now I always thought there might be something I can do be more "normal". Now I realized that my brain has all these reasons why it functions differently and I will try to be more kind to myself instead of always pushing, apologizing, being ashamed etc Wishing you all the best!
![Felix "Unfair" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/Oswujxm2Ag0/mqdefault.jpg)
“I don’t want to exist in this body” I feel this so hard.
I think how it would be so nice to take a vacation from my body. Just not feel all the crap for a little while. Yeah.
My husband has recently developed tinnitus after his 2nd covid shot and I feel this so hard. I have watched him suffer from anxiety and mania and it is terrible. It is like watching a person be tortured by a sound that never goes away. Please don't give up hope. Keep going and take it day by day. If you need to rest then rest. You must be so exhausted. Just the fact that you never gave up and kept searching for an answer is so motivating.
"take a vacation from my body" I literally said that today, I have a lot of weird symptoms that we have no answer or cause for, and today all of them decided to show up at the same time! It was really awful and I wished I could just get out of my body for a couple of hours but I couldn't, so I had to keep focused, stay calm and manage them one by one, starting by most dangerous and going thru until the only annoying ones. It's exhaustive, but we gotta do what we gotta do to go through today, because tomorrow is unsure lol
Im so sorry. I feel that so hard. I suddenly developed tinnitus 5 years ago after waking up from a surgery that had nothing to do with anything near my head. It drove me crazy when I was trying to sleep and all I heard was the ringing, or when it would start out of nowhere and overwhelm my ears. It still does quite often. Now I have to sleep with noise, like rain sounds or anything that will get me to focus on the sounds instead of the ringing. I hope he finds a way of coping with it and I hope it's only temporary cause I know how much it sucks.
@@coastalcaitlin Go to a physical therapist. After years of tinnitus, it "cured" mine. I needed a tweak a year later.
I agree so so deep with you. I can’t say it any other way yet now maybe never. I’m so sorry we feel such extreme things and we don’t deserve this. .
I Hear you so loud and clear sweet Jo💜 I’m just sorry 😢 we are in this kind of predicament. You are so loved. I hope you have more better moments that not in life. You know you are NOT @ fault here. It Suks! But you are a Good person Jo! 💜xo
Doctors often don't realize that there is a real value, to patients, in having an accurate diagnosis. Partly, of course, it enables us to keep an eye out for new or unknown treatments if we want to -- and partly it's just plain validating to our experience of having discomfort and pain and difficulties in living life.
Doctors have, in large parts, become drug pushers more than anything so as long as they can prescribe you whatever drugs, they get paid for it so it's in their best interest to have you without a specific diagnoses so that they can keep on prescribing you all kind of medication........
Absolutely. Doctors can’t understand how validating it is as well as the fact that any diagnosis opens the options for accommodations, insurance-covered medical aides and so much more.
Before I was diagnosed with ADHD, someone (not a doctor) asked me why I would want to know what is wrong with me. Why would I want to put myself into a box?
Maybe because I wanted to know what has defined my life and impacted me hugely in a negative way? Maybe?
I want to give this a thousand loves - It was just such a relief to be believed by a Dr.
I have less respect and faith in doctors when I hear stories like this. It speaks of not giving a shit about you and/or borderline incompetence.
Welcome to the incurable illness club. We don't love what we have but we love each other
This is beautiful! We can draw strength and understanding from each other.
This made me cry happy tears 🥺 that should be our motto 🤣
We all need the support of this group because dealing with an invisible or chronic or incurable illness is extremely difficult and frustrating, but it also sucks that we need to have a support group so that we know we aren’t alone. Unfortunately there are still doctors and people in the medical field that can’t be bothered to actually listen to their patients and run tests and whatever else is needed to try to discover the diagnosis or underlying causes of the symptoms. Granted the car accident that was the root cause of many of my issues was before the MRI and CT scanner wasn’t invented yet, but my symptoms were a giant red flag that was repeatedly missed leaving me repeatedly misdiagnosed as the spinal cord injuries would suddenly start getting progressively worse during the only pregnancy that I was able to carry to term. When I started having severe pain and troubles standing and walking I was told it was normal for some women during pregnancy and it would go away after giving birth. It didn’t go away. I moved to a different state and had to find a new doctor. He was ok at first,until I went to him because the pain, muscle spasms,trouble walking and standing was getting worse. He would repeatedly tell me that I just needed to lose weight and exercise more. All of which I was trying to do. Because he couldn’t or wouldn’t do anything I started going to a chiropractor who helped a little, but also made it worse. I had to buy a rolling walker for safety reasons especially because I was a teacher who worked with kindergarten and first graders. I couldn’t take it anymore and I was sick and tired of him implying that it was all in my head and I was lazy and was the stereotypical fat person who binged and over ate which is the complete opposite of me. After praying and asking for strength I stood up to him and demanded that he order an MRI which he didn’t want to do and fought me on making the process much harder and embarrassing me by sending me to the local hospital where my weight prevented me from getting the MRI done. I had it done on Friday March 12 and on Tuesday I received a call from his office telling me that I had an appointment with a Neurosurgeon later that week. I was blindsided because I hadn’t heard from my doctor. So I had to ask the staff person what the MRI had shown and she was shocked and angry that he hadn’t called me personally with the results. It definitely showed that it wasn’t all in my head and I wasn’t lying or being lazy. My spinal cord was impinged and being crushed in between my vertebrae in 4 places and the nerves were being crushed and cut off which was causing the numbness and severe pain in my arms, hands, legs, and feet. According to my Neurosurgeon I shouldn’t have been able to stand up let alone walk with the location and the amount of damage shown in the MRI. He couldn’t believe that I was even functioning at the level I was with the amount of damage shown. I had my first spinal surgery days later. After the surgery he told my husband and I that the damage had actually been even worse than what the MRI showed and that I had been one wrong move away from death or becoming a quadriplegic on a respirator for the rest of my life. My ex- doctor tried to make a joke out of it because if I had listened to him I probably wouldn’t be alive. Because the accident happened 20 years prior to the first surgery my Neurosurgeon couldn’t guarantee that the pain would go away completely and I might still have areas of numbness and that I would have full reversal of my symptoms and the damage could still be permanent. I did pretty well for 6 months and then the pain and some other symptoms started returning. More tests and another MRI showed that I was having trouble in the areas above and below the areas he had repaired and it appeared that my spinal canal was too narrow and I essentially had a tethered cord. 2 spinal surgeries done back to back in a 10 hour surgery would correct the problem but it required fusing my vertebrae starting at C2 and going down to T3 in addition to widening my spinal canal and my spine is now fused on 3 sides. And that is only a tiny bit of my crazy journey that is filled with so many crazy and unbelievable diagnosis’s and life threatening health issues one after another.
Well said! That sums it up so perfectly. It's tough belonging to a club that nobody ever asks to join. Reconciling oneself with the situation though is the beginning of finding peace with it, despite the pain. I find that people don't or won't accept that if they have never been there, some even see it as giving up, but fellow 'spoonies' understand. (CFS & Fibro here)
YES! That's a great answer! I think sometimes we're not meant to be all the way healed because God has a plan to bring us together in a particular place, where as we might not otherwise have ever met. Yes!! I love this!😁👍❤
Getting my fibromyalgia diagnosis helped me feel good about prioritizing my self care, about rationing my spoons, and about making career choices that were motivated by my health and not my desire to stand out at class reunions. I'm glad to hear you're starting to give yourself grace too. Hang in there!
The worst is trying to embrace this mindset when many of the most important people in my life still seem to think I just need to try harder.
You don't know how much this means to so many people. To hear someone talk about these feelings so openly is so validating and so important. Thank you!
I completely echo this sentiment. She is an amazing person.
“I’m just tired”. I have said those words so many times myself. Having a chronic illness is eye-opening. I hope that you can find some cadence that keeps you relatively comfortable. Much love
I have EDS and can relate to that feeling of knowing that you’re most likely always going to be in pain one way or another. My grandma also has EDS but wasn’t diagnosed until after me, when she was 76, so I’ve been able to see what undiagnosed and untreated EDS looks like in older age and it’s scary. The constant pain she’s in is so hard to see. I wish I could give you my physical therapist because she works with people with chronic pain and teaches them why it happens. It really helped me when I was first diagnosed. I’m wishing you all the best♥️♥️
I have EDS too. My grandma seems to be the farthest back we can trace the symptoms to. I always got yelled at by my grandma for my joints because she didn’t want me ending up like her. Turns out it is me. My dad has it mildly but my one aunt is the type who will herniate at the drop of a hat. My other aunt has fibro but it may be a misdiagnosis after all of the connections my family has made.
My mum and sister have eds too. My mum have been told Al her life until that day it's all in her head to it's because you are a woman yea it have been crazy she thought it was just her then my sister got the diagnosis and the Dr wanted to see our mum and when she got her diagnosis she said it's okay since now she know it's not all in her head
@@JS-dv9ji according to my EDS doctor, who is a zebra herself, told me right away when I had said I was diagnosed with fibro that fibromyalgia is the number one misdiagnosis for EDS.
Me too…. I was only diagnosed really, this year. Last year my doc brought up EDS but I didn’t think I really had it as I have just always thought all my medical issues and pain etc was “just who I am” and I just had to push thru…., ask me how well that has worked….
Another zebra here. For me my granddad was where it prob came from. My dad and two of his sisters have it. My grandad was in a lot of pain but was hyper mobile enough at 80 to put his legs over his shoulders. He lived with so much pain and had issues with the meds affecting his heart. I’m 34 now and it’s been a challenge to have things become so much worse with age.
Welcome to the Club. I'm twice your age and have had FMS since my teens, too. I'll keep you in my prayers.
My oldest daughter has fibromyalgia and when you said "I don't want to exist in this body" she said that's how I she feels often.
Incurable illnesses suck and as much as having ones myself sucks it sucks even more knowing my child deals with having incurable illnesses. It's definitely not something I'd wish on anyone else.
I keep telling the people to build me an android body to upload myself into because I do not like this meat prison.
Fibro plus a lot of other stuff. If I could get rid of pain and a digestive system, that would definitely be a step up.
I still want to be me, so I don't know how to pick and choose the brain stuff to get rid of while keeping myself. But the meat stuff can definitely take a hike. I can't, ha!
I was diagnosed with Fibromyalgia over 18 years ago. I KNOW HOW YOU are feeling! I have tried many things over the years. Some work, some do not, but I have some insight and I am here if you EVER want to chat or have questions. Many people do not understand this syndrome so they don’t know how to help or respond. I am here for you, Jo!
I have lived with multiple chronic illnesses and chronic pain for decades. I think your response is typical and normal. The answer is you get through one day at a time. Every morning is a new day, a new challenge, a new blessing. Know you are not alone. We are warriors and we fight each battle as it comes. Sending love and hugs your way.
As you mentioned and have been learning: Chronic conditions can teach us a certain Grace. Chronic pain disability (and shifted abilities) has been teaching me Grace. Parkinson's, as my dad recognized, taught him a certain Grace. He became much more in touch with and expressive of his emotions. He also wanted a different body. When it became difficult for him to get his legs to walk, one time I was about to go to their kitchen,
"Dad, can i get you anything?" I offered. "Would you like something?" /"Yeah!" Dad replied, "I'd like a new body!"
Try rest as much as you can. Warm baths and heat pads will become your new best friend. Good luck and welcome to the fibromyalgia club. X
I bought two electric blankets last fall (one for the bedroom and one for the living room) and it was the best money I've ever spent. A huge heating pad with a fuzzy soft cover! Highly reccommend!!
Epsom salts may help too. Dr Teals are my favorite. I have RA, not fibro - but joint pain often led to muscle pain. Relieving some of the muscle pain helped quite a bit, even though it was a secondary issue
There is a drug called lirica that can help too
I feel fortunate to have moved into an apartment building where there are several women with fibromyalgia. Two of my besties have fibromyalgia. Most of the time if 1 of us having a high pain day, 6 out of 7 us will be having a high pain day. B and I are one of only a couple 40-something women in a local urologist's practice. B is well read on the subject.
I also have lupus (SLE), CRPS, and several other painful conditions.
People with FM sometimes get some relief with Lyrica, gabapentin, Savella, or Cymbalta.
I am just tired. Sick and tired of being sick and tired. There isn't a support group locally. If there is one near you, I recommend checking it out. Some are better than others and, of course, some will have a better fit for you. Being around others with it on the daily, has been helpful and validating. I was diagnosed 26 years ago.
I know it is unlikely. But in the unlikely case if you are taking omeprazole (or another proton pump inhibitor), discontinue it for a time being and see if it helps. I had a horrid reaction to the medication which was the most textbook fibromyalgia one can ever imagine. Turned out, it was a rare side effect of the medication. Some other medications are also known to cause fibromyalgia like symptoms. If you are on any prescription meds, I would carefully read insert to see if muscle pain is listed as a possible side effect. Additionally, I would search in google scholar to see if there are any documented clinical cases or research (using key words of your medications and muscle pain). That's how I figured out about my omeprazole reaction. This made me wonder whether my reaction was indeed rare or if some people may just not make the connection. I found documented clinical cases of omeprazole causing muscle breakdown. That's how I figured it out about my omeprazole reaction. I would be interested to see how common this might actually be since so many people take proton pump inhibitors as well as some other meds known to cause muscle pain. scholar.google.com/scholar?hl=en&as_sdt=0%2C3&q=omeprazole+rhabdomyolysis&btnG=
I was diagnosed at 18 with Fibromyalgia, I completely blanked it out, refused to believe it. Unfortunately the doctors and specialists were no help at all. I was told to keep seeing pain specialists only to constantly be told there is no solution or cure. I gave up by the time I was 22. I felt like I was fighting a loosing battle. Even with being diagnosed doctors didn’t believe in that diagnosis, I felt like I was constantly talking to a brick wall. I’m now 25, have been living with chronic pain for 15 years and finally this last year I have been coming to terms with how my body functions, I’m starting to fight again, try to get help and finally, finally trying to live life again to the best of my ability. It’s hard, but I’m determined to get whatever help I need but at my own pace.
Thank you Jo for putting this all into words. Showed a few friends this video and I think finally they understand me just that little bit more!
I will always be on antidepressants for the rest of my life, unless some miracle breakthrough happens. I loathed my medication, often skipping it because that was the only control I thought I had. In response, I ended up in the ER multiple times for suicidal thoughts. I finally realized how lucky I was that I had access to medications that help save my life. I’ve been doing great ever since. I had to give myself permission to accept I wasn’t going to be status quo, and even on meds I have limited abilities at times. I had to give myself permission to not be what everyone, including myself, wanted to be and just accept who I am. And honestly, I’m a pretty good guy and there are days I’m blessed enough for others to see it.
Jo, you may not ever be the person you felt destined to be, but give yourself permission to be you to the best of your abilities. Some days may bring more success than others, but to most of us on your channel, we are blessed to see you for who you are.
I relate to this so much. I not only have a depression diagnosis but I also have a PMDD diagnosis that exacerbates the depression. I had to hit rock bottom to figure out medication would be a lifetime endeavor
@@kellybertling4744 I have a feeling I have PMDD too, and already have a depression diagnosis :,) I've been on birth control for ages now, because I just wanted it to stop (I skip the placebos to manage my symptoms) glad to know I'm not alone
@The End Source?
@The End Well, depression can be an incurable illness.
@The End antidepressants work. I have multiple chronic soft tissue pains. Each one a known diagnosis. Antidepressants help me since 2014: Combatting "The Pain Drain." Their lift and mental shifting helps. Antidepressants (for me just basic Zoloft and a medically well-known social anxiety reducing good side effect of Tramadol, one of my pain reducers.). They also helped free me from Thinking too much /distrusting my intuition. Basic (generic) Zoloft also helped my mom in her later years and my dad who had Parkinsons.
As someone who has fibromyalgia, thank you for sharing your story ❤️ it’s a tough diagnosis but just know you aren’t alone
Totally feel this. I was diagnosed with Gastro Paresis in my last video. Not being able to eat enough calories in a day is tough, and knowing there is no real cure is even tougher. Just gotta keep on keeping on. Stay strong!
I also have gastroparesis 💜🙏💜
I also have Gastroparesis …I now have a J tube
@@ttmr241 I also have a j tube 💜
I have it too! I finally got off of a liquid diet for a little while hopefully 😌🤌
I have a different condition with some similar symptoms, and it definitely suckssss. I'm glad I was able to finally get on a diet that works for me though.
This is so hard to deal with. I have CRPS and I've learned that grief is cyclical. You have ups and downs. You need to allow yourself to grieve the person you used to be, the future you wanted, and the pain that you will have for the rest of your life. Treat it like the loss that it is. Like pain or energy, we will have good days and bad. A good therapist who specializes in people with chronic pain will help. False hope will lead you down a very dark path.
Learn to be realistic about what the future holds. A magical cure that will make you feel 100% better? Unlikely. Some combo of medication, activity, pacing, etc that will get you to a better place than you are now? Totally realistic and doable.
When it comes to the pursuit of "getting better" I take breaks. A person can only go to so many fruitless appointments, try so many medications that don't do anything but give horrible side effects for so long. I take a few months off, sometimes even a year at a time (mostly while waiting for specialist appointments) every so often. My GP and therapists have been very supportive of this. I usually will put a time limit on the break - say 3 or 6 months. Both your body and mind need a break every now and then.
Best of luck to you, thanks for your content :)
I have CRPS as well. Have you done VECTTOR therapy with Dr. Rhodes? It has truly changed my life with CRPS.
From a fellow crps warrior just sending my best wishes and huge virtual hugs
It's always bitter sweet finding other people with crps. It is nice to not feel alone but I am so sorry you have to go through it also.
I'm learning more about CRPS and am starting to believe I have that in addition to Fibro. It would explain some things that Fibro doesn't. What type of specialist should one see to get any type of testing done for it? tia
@@redfly5937 Usually ortho, podiatrist, pain management. I highly encourage getting in contact with Dr. Rhodes. drrhodes@vecttor.com. Gentle hugs from a fellow warrior 🧡🔥
Jo, it sounds like, from the outside, that you are processing grief. I am so relieved to hear that you are able to recognize when you need time for yourself. What ever you are feeling is valid and you have to process it in the best way for you. 💜
👋🏻 Fibromyalgia here, too. My symptoms started at a similar age to you and I was diagnosed at 32. I’m 40 now. I’m glad to hear you able to just be with your emotional responses. FWIW, I think that beginning your thinking in this way - how can you pace yourself and prioritise what is actually important to your well-being - is exactly the right thing to do. The truth is that whatever medications and therapies you choose (or not), you will still need skill in pacing, boundaries, and self care.
If and when you get to the point of considering treatments, I’m happy to share my experiences.
I know how you feel. I was diagnosed with axial spondyloarthritis 6 years ago. The first thing I felt was relief. Relief that I have a name for what's going on. I imagine you initially felt the same. After that I went through the grieving process, and from what you've said it sounds like you're going through similar. It's a lot to process! Glad you are taking the time and have the awareness to process it all properly. So proud of you ❤
Reminds me of how I felt when searching or answers (at 36(F) turns out I have Autism). That I will always be in pain, will always be low energy, will probably never be able to stick with a journal or learning Korean or hold down a job or keep my house clean, will always have anxiety and panic attacks before visiting family etc.. So I’m happy that all the troubles, difficulties, oddities, have a name that I’m “not crazy” I’m hoping that it will be something that will get me to stop beating myself up over things I can’t do. And on the other hand I’m pretty sure that this has solidified my mothers anti-vax views.
Thanks for sharing, all the hugs.
Yes! I have a piece of my brain missing which often has similar symptoms to ASD so I relate very deeply to your story ♡ thanks for sharing! After years of psychotherapy I'm slowly coming to the realisation I will never be "normal" and that SUCKS but like Jo said, it is forcing me to Prioritise the things I do care about and let go of the rest.
Accepting my pain has helped me so much. Like I'm not gonna stop trying stuff, but accepting that this is where my life is now is so helpful. I'm not giving up, but pining after a reality that'll never exist is just gonna cause me more pain.
My wife has been dealing with chronic illness secondary to Lyme disease for years. So many tests, so many procedures, so many specialists, so many treatments and diets and exercises and meditation and and and…
Coming to grips with “making peace” with a chronic illness, especially one that’s “invisible” ( how many times can one hear “but you don’t look sick”) is a never-ending journey. You’re entitled to feel all those emotions, and never forget that “no” is a complete sentence. Listening to you is soooo similar to the conversations between my wife and I.
Thanks for the honesty and the reminder of the vital importance of advocating for yourself in your health care.
Also, I have days I cry because I know this is my life with fibromyalgia. Like you are saying it will never be better. I recently quit my job and left the career I had been working towards for years but I just couldn't do it anymore. I choose to have 1 child because I know I cannot physically handle another. But I try to find happiness. Because this is my one life. Gentle hugs. 🦋🦋
I am 69 and have lived with fibromyalgia and chronic fatigue and all that that entails for many years. You are so right to say that it is so difficult to accept that this is your life from now on. I went into a deep depression and actually grieved the loss of my health and many dreams for my future. My husband couldn't cope with the limitations that my condition placed on our lives. We were divorced 8 years ago. It's probably for the best since the fibro and cfs have progressed. I have learned to understand and accept that this is my life. Many folks have illnesses and health problems that they deal with and fibromyalgia is one of them. It's a very frustrating and maddening disease! Sending love to you and all the fibro warriors out there. The struggle is real! 💜
Thanks for your content. I'm not a disabled person, nor a person with a crónic illness or pain and this chanel help me so much to understand the complicated feelings that goes with those things. It helps me be more empathetic, more likely to be pacient with strangers or even with myself if in the future I would have to deal with any of that. I dont know, It feels like it helps me to grow as person and that makes me happy. I hope that you can get througth this breakdown as fast as posible and that you wont have to confront this ideas too many times more.
You should know that you can be a voice for anyone dealing with incurable/chronic health issues. You are so in touch with what you are feeling, you can put into words exactly what we struggle with. I thought of this video this morning as I walked my dog, feeling honestly pretty awful while I did it. I thought of the times that I have felt, as you expressed, that maybe it's time to accept my limitations & allow myself to NOT do some things. The picture of me in my comfy chair, sipping tea, reading War and Peace can be very appealing. Then, as I finished my walk by going further than I had planned--my dog insisted!--I felt proud, healthy (and sweaty), so for today I was glad I pushed on. Which is the "right way" to feel?? I think there is a time for both. I do spend a lot of time in that comfy chair, but if something in my mind or body tells me I can do more, I give it a try. Sometimes I get halfway to the park & turn around & go back to my chair, & you are absolutely right about giving yourself permission to do that with no guilt. I wish you & anyone in this situation peace & happiness in whatever you do! Sorry so lengthy, but I guess you sparked something--please, keep it up.
You're always so great with the way you put things, Jo. I was diagnosed with fibro at 19 and I'm 25 (nearly 26) now and still processing. It's a long grieving process and definitely comes and goes just like you've described. Periods of time where you just get fed up and try to find a solution, periods of hope, periods of grief and anger and depression. Side note fibro-specific depression is definitely a thing and it took me a few years to notice I had it. It's a tough diagnosis and it takes a long time to come to terms with and I don't know that you ever really do. You just learn to live with it more and enjoy the moments when you're feeling better! Everyone will have an Opinion on what to try but it's your body and sometimes being on nothing/trying nothing feels better than trying stuff because you get off that constant rollercoaster of home vs disappointment. You also get better at reading your own body and knowing the sorts of things that trigger flares. You're not alone in this and it makes me feel less alone too to hear you talk about it ❤️
You are in good company dear. Been living with fibro for over 20 years now. We still managed to raise 5 wonderful kids, all adults now. Stay home mom, various part time jobs as my body allowed. Finally retired and I’m still kicking! Very gradually slowing down now, reasonable to expect at 60😏.)
You get to take your time doing this, no hurry, not a stop sign, just a detour (life is normally full of those anyhow). So since you’re rerouting treat yourself by taking the scenic route whenever you can. Literally and figuratively.
Partners benefit from learning ways to manage your symptoms and budget how you plan to spend your energy each day. Lots more resources and helpful pointers available now than when I was first diagnosed. Be kind to yourself. Avoid overbooking yourself. You can easily adjust methods as needed. Create even more ways to streamline and simplify chores etc. (I bet you’re already more familiar with that than most folks). You got this!
Having an accurate diagnosis is extremely important so your brain doesn’t go off in creating multiple stories according to how you feel on any given day. No one wants to have a disease that has no cure, but it is best to give your symptoms a name that will guide you to what to expect and how to handle your symptoms.
I have been diagnosed with fibromyalgia as well as several other autoimmune disorders for close to 40 years. There are good days and not so good days. The important thing is that I understand better the symptoms, what triggers them, and also what to do when having a rough day. We all have to deal with different issues, such as physical, emotional, mental, or social circumstances. We just have to be aware that those circumstances don’t define us. We define how to handle those circumstances.
I love your attitude, and this attitude will help you move through the difficult days and enjoy fully the days that you feel better. All of us have limitations of some sort. Chronic conditions bring the blessing of making us humble and gracious of he good and bad times. Hope you are doing better and that life is more enjoyable these days.
I'm SO SO proud of you for saying that you're going to do what you want with your limited energy and time. You DESERVE to choose to do what you CAN and to be gentle with yourself and NOT push. I LOVE hearing you say, "Maybe now I've done enough." **hugs**
Jo, I resonate so much with this.
Last year, I was diagnosed with two incurable condition, and oh boy it has been a rollercoaster of emotions. Knowing that there are words cor what is wrong and treatment options and others experiencing the same issues has been so helpful to me.
I was diagnosed about 15 years ago with Fibro and at first I was so happy to have a word to describe the craziness I felt in my body. But as the years have gone by, I've learned how to accept what is. I have days I can do, and days I can't. I'm a realist. I had t o give up the anger of what I was unable to do. Now at 57, I'm at peace with that now. I recognize my flair ups and take care of me. I understand everything you are talking about. Just because you can't " do life" the way you imagined, doesn't mean you can't live the best life for you . Sending you positive thoughts and healing energy. 🥰😘
I've got lupus- I feel your pain. Literally. Godspeed and all my love to you! 💜
I have an incurable illness. For now, it’s on the shoulder of the road. I’m so grateful to be there now. One day, the pain & fatigue will be right in the middle of the intersection of my life. I enjoy each day & will fight it fiercely until it’s time for a change.
I have fibro. It is a lot. Some days I feel normal and capable, and other days it is exhausting to exist. Pain is a daily thing but I've found ways to manage and minimize it. I appreciate how you've phrased so much of this!
I have both fibromyalgia and chronic fatigue syndrome, I was diagnosed with CFS in November 2006 and with the Fibromyalgia in May 2007. I found that I had to grieve for the life I wanted before I could accept my life as it is. It took a while, but I have got to that point. I know it seems daunting.
My top tips are to learn how to plan, pace and anticipate. Also, accept that you will have to write off some days as bad days. For example, we were meeting friends on Sunday, so I knew i would not be capable of doing much on Monday. We are off to see my brother and his family next weekend, which means a 5 hour drive and 3 nights in a budget hotel. I always start planning the packing early as that is the part I both hate and procrastinate over. I will be resting next Thursday, and pacing myself as best I can leading up to it. I will be doing a little bit of packing every day, and keep a notebook with my lists. My plans for the days after we come back are just to rest up. The journey back will be hard going as we are calling in on family in Birmingham on the way home (I am in the UK).
There are some great Facebook groups that are really supportive, my favourite is Fed Up with Fibromyalgia. That one is worldwide, but mostly American sufferers. The lady who runs it is lovely.
Give yourself time to process it all. Stay organised, and be kind to yourself. As with most things, there isn’t a one size fits all solution. Like many others, I use heat for pain, but I also use a tens machine for my lower back pain. Microwave wheat bags are good as they stay hot for longer, or an electric heat pad can be good. A heated blanket in winter is good too. Also, don’t be surprised if you find winter harder than spring and summer. I flare more in the winter. There are lots of birthdays and occasions for us, so I think the stress accelerates a flare.
Take care, and be kind to yourself xXx
I’m a young person who fought so unbelievably hard for a diagnosis, trips to the Mayo Clinic, so many doctors, hundreds of tests. Eventually I was given the fibromyalgia diagnosis and I felt like they were wrong so I spent more time and money looking for a different diagnosis. Years go by and I was still told it was fibro and I felt so defeated.
Now I married and have a toddler. Life has been HARD. Pregnancy was HARD. Being a mom with such a disorder is HARD. Truly, just existing is HARD.
I’m sending my love to you because I know exactly what you’re going through. It’s the hardest shit, and it’s even harder when it’s an “invisible disease” and others don’t really see what you’re struggling with. I still have hope that someday I will get better, but right now it sucks. We’re strong, we’re capable, and we are tenacious. We got this!
This video is so validating and I completely understand. As someone who only got some level of a diagnosis 3 years ago after 15 years of dealing with issues, I have accepted that there is no "cure". I may very well feel this way "forever" and my friends and family may have to continue to worry about me. I may have to spend a lot of time laying down or in a "comfortable position." I may have to see specialists and take pain management medication "forever." And I have accepted it. I wish you peace as the waves of grief continue as time goes on. You have to choose to make peace multiple times and you will.
I’m currently in the process of getting doctors to confirm my suspicions of fibromyalgia. I’m glad people are talking about it. Accepting that pain, discomfort and exhaustion is something that will always be there with you if very difficult and I think people often don’t understand what it really means and how daily it’s a massive struggle. I’m in a position where I want to be diagnosed with it so I can prove to all the gross people in my life who’ve always told me I’m just exaggerating or that it’s just because I don’t sleep well or I don’t move enough blah blah that regardless of what I do I will be in pain. Plus I really want to have some guidance on how to manage it better. We got this, sending love to you and your body 🥰
Sending lots of love. Personally, I'm still in the progress of trying to find an answer, overwhelmed with constant doctor's appointments and referrals. I just want to know as best I can what it is and what I can do about it in fear I would else later find out it "could have been better" if I'd looked into it. This video is a good reminder for me that there may be no answer or even if there is, it may not change much.
I was just diagnosed with Lupus at the beginning of June and when I say, you put into words exactly what I've been feeling--ESPECIALLY about the part of saying No...I want to be done feeling obligated to going to things when I just can't. I know it's going to take work, but I need to not go to these functions especially when they could trigger a flare.
I’ve been at it over 20years dealing with this. The aggravation for me is each day is different because parts of your body hurt differently at any time day or night. It’s a struggle no one except another person with it would understand. I understand your whole perspective.
I have a rare chronic neurological sleep disorder (idiopathic hypersomnia) which causes excessive daytime sleepiness, extremely prolonged nighttime sleep (up until 16h), brain fog and much more. You constantly feel exhausted, like someone who hasn't slept for 2-3 days, just on a daily basis. It is really hard to accept that life basically consists of work and going back to sleep, so I feel for you. I have learned a lot from other people with chronic disabilities on how to accept my illness and I'm trying to have a positive outlook on life. I'm sending many hugs your way - you're attitude and videos have helped me a lot as well. Just remember that you're not alone in this and that we are thankful for the joy you bring us
Thank you for sharing. I'm 25, I've had fibro more than 20yrs, and I'm still coping with the fact that it's never going to be fixed. I'm always in pain, from my skin to my bones and organs. It causes several things to flare up and to make average problems into really bad medical issues. It's given me chronic pancolitis and acid reflux, it's made my HPFS worse, it caused my "insignificant" bulging discs to paralyze me for over a year, and most days my energy in inefficient. What I've learned is that I need to take things one step at a time, even if that means hour by hour. I may not always have good days, but I've learned to appreciate them, savor them. Because there is no guarantee, but there is always a light. You find ways to modify. I have little bins in every room in my house with things like water, a heating pad, a notebook and pen (brain fog), earmuffs (hypersensitive hearing), glucose meter, blood pressure cuff, and a Tens1000 unit with rechargeable battery. I have one of these baskets in every room so that I don't have to go around my house just to get something. OH! And gel eye masks in the fridge, I have maybe 5 on rotation.
I felt this in my soul. Gosh dear, it's like hearing myself talk when I heard this. Thankyou for reminding me that I'm not alone. It means so much. 💜💙
"Giving myself permission..." Yes! Good for you, I had the same mindset when I finally got and processed my own Fibro & hEDS diagnosis. Allowing yourself to change pace, shift down a gear, learn better self-care. It's important, with or without a diagnosis!
(Sidenote: my little 3yr old cat has just become an amputee. Some [expletive] shot her in the leg with an air rifle. So naturally that reminds me to check up on your channel! She's doing well and yes, police have been informed.)
JUSTICE FOR KITTY! I'm glad she's doing okay.
I can feel the sadness, the (maybe) anger, the lack of hope and I can ABSOLUTELY understand and know exactly how you’re feeling. And know that there is nothing one can say to change that, to take all that bad stuff out of our minds.
But know that you’re existence have been bringing a lot of good to some people. I understand you, you’re not alone.
Lots of love for you 💕
I'm sending all my love and support! I have hEDS and finally got a diagnosis in March and while I was pretty sure I was gonna be in pain forever, and my current level of health is likely what will be what I'm like forever... It being confirmed is always a smack in the face. I got to a point where I acknowledged I was fighting a losing battle, and that using accomodations, working part time etc aren't BAD THINGS. It's just a fucking nightmare and there's often no "positive spin" which makes it harder but often it is possible to live in harmony (or at least acceptance) of your body on most days. I hope you find some peace in your situation ♥️
I know from my own experience with an incurable disease, I have been set free by ceasing to fight & accept my life as it is-not that it always will be that way, but that it’s that way right now..it’s given me tremendous emotional, physical & mental space I didn’t know was being consumed by constantly fighting & rejecting what my body has told me is our lot right now. Sending you so much love & strength & liberation through letting go..for now❤️
So glad you have a diagnosis! I recently had a doctor give me a diagnosis with the “I’m sorry that there isn’t much we can do for this problem.” I told her to not be sorry, that actually having a diagnosis takes off so much pressure. Fibro definitely changes your life, but as I have received several chronic illness diagnoses I decided I could sit and cry, feeling sorry for myself, or I can accept my life and learn what can help me find joy. Following your journey with your amputation and working through trauma has really helped me in learning to accept who I am and to try and find joy in small things. 😁
I am 31 and have dealt with my body taking things/ability away from me since I was 13. I knew I had some form of arthritis, but I finally got my diagnoses of spondyloarthritis and fibromyalgia only two years ago.
I am literally sobbing watching your video because this is how I felt when I got my answers. And I still feel this way. My partner is encouraging me to apply for handicap parking and it's so hard to verbalize why I am so vehemently against it, I don't want my illnesses to take another thing from me. Thank you for verbalized how I feel.
I hear you, Jo. I'm in a similar place with CFS, I got diagnosed quickly but spent eight years believing I would get better and following various programs promoting that idea and have this past year realised I need to actually deal with what is happening and with the possibility that it could be permanent or at least go on a good deal longer and its a totally different thing, even though I've been dealing with the illness all this time. It's rough but hopefully moving me forwards in many ways. Glad I found your channel today. Wishing you well.
Another great video that I can really relate to!!! My wife has had chronic pain for over 30 years. She was diagnosed with fibromyalgia over 20 years ago, which is what they seem to do when they can't find anything wrong with you. It's another way of saying "It must all be in your head!". She also has chronic pain from a fall 30 years ago. And is 100+ pounds overweight, only making the problems worse. She currently needs neck & back surgery, but she is way too overweight for anyone to agree to take the risk with surgery. She turned 60 yesterday and is basically mentally and physically shot, and probably has been for a few years, she just keeps pushing thru. Our 22 year old son ALSO has mysterious chronic pain, AND he gets daily migraines. He can't work because he has too many days where he's nonfunctional. He was told more than a decade ago it must all be in his head because they couldn't find anything wrong. Any meds they've offered only make him feel worse!! He's been dealing with this most of his life, which doesn't do much for his mental health. Mental illness is also prevalent on both sides of the family.
When you have constant pain it’s horrible. I have a disconnected shin bone and have pain. No where near what you live with but it took docs a long time to figure that out.
It’s refreshing to hear someone to talk about their life candidly like this. You are awesome! I love hearing about the things you have to deal with. I love seeing that there are other stubborn people out there who refuse to ask for help sometimes even though we need help. Keep sharing with everyone. It’s helping so many people. You are so amazing and I’m glad I stumbled across your Chanel because your stories are inspiring.
Thank you for making this video I have fibro too and seeing other people talk about it makes me feel so heard, I got diagnosed at 19. I had the same experience with doctors telling me that it probably won’t get better. I was misdiagnosed with rheumatoid arthritis due to symptoms presenting in a similar way and received treatment for it and had terrible side effects from medications used for RA because I didn’t have the condition. I’m 21 now and I am feeling very frustrated and stuck as well.
Give yourself compassion because as hard as it is, over exerting yourself won’t help. Take one day at a time. I had to leave my original career path because of fibro as it was a very physically demanding job but you can learn to live with this and adapt to the changes you may have make because of it. My life is different than I expected but that doesn’t make it any less full or happy. Fibro is hard to live with at times but I have learnt to make the most of the good days I get and really value them. Thank you for talking about fibromyalgia there are more of us with you than you know
I was recently diagnosed myself. You definitely put in to words a lot of what I felt at that final diagnosis appointment and the days afterwards.
After being diagnosed in 1986 with FM.... it was not, at that time, considered a "valid" illness by mainstream, and did not have many resources. I too have pushed myself far beyond common sense concerning my health and abilities... including work, tasks, and living up to other people's expectations of what my life should be like. I immediately dove into problem solving mode, searching for "the cure". It wasn't until I let go (many, many years later)... stopped trying to justify my symptoms, physical difficulties, and illness to myself and others... and started doing what I needed to manage symptoms, remain mobile, stimulate healthy mental well-being, take advantage of rest, and surround myself with peace.... did I actually start getting better. Denying myself the truth, trying to live a lie... created so much negativity and anger. Once I truly started living my truth... I started feeling alive again, and began loving life again. Yes... I'm still in pain and exhausted all the time. I still have up's and downs, still have good days and bad days..... but I'm living and enjoying life on my terms now. Thanks Jo for your honesty!🤗😘💕
Wow...thank you! You have so perfectly put into words what I have been going through with CRPS.
No one I know has any real idea as to what I deal with on a daily basis,...even though I have tried to explain it to them. I sometimes feel that they don't really believe me.
I am going to share your video with them, so that they might better be able to conceive why I am no longer the person they have always known me to be in the past.
Getting a diagnosis like this changes a person. I have had to cut out of my life those that were bombarding me with toxic negativity. And also those that were spewing toxic positivity.
As someone who has chronic pain, I can definitely say that one of the best things you can do to manage the pain and have MORE good days is to toss out the pressure to live a “normal” life. Do what works for you and don’t give a crap about what anyone else thinks. Showering often makes my body aches worse so I use a lot of dry shampoo and sponge baths if I’m not up to a shower, and never worry about showering daily, and feel SO much better. That’s just one example. Acceptance is scary because it can feel like giving in and wallowing, but the reality is that it will open the door to peace, which is HUGE for managing chronic pain of any kind. The other thing that helps so much is studying the mind-body connection and getting a good therapist who can help with the journey. The medical side of chronic pain is just 50% of the game - managing the toll it takes on your mental health is the other half. When your mental health suffers, the chronic pain gets worse. Strengthening mental health and dealing with any unresolved grief and trauma helps tremendously with chronic pain, and in some cases even put it into remission. 💜💜
totally true all of this.
I reinforce everything you've said. I have sensitivities and reactions to the traditional medical treatments for FM. I've found best results with homeopathy, clean eating, BodyTalk, osteopathy, energy medicine, yoga, meditation, and swimming.
Your journey to diagnosis is so much like my own. I actually mentioned fibromyalgia in one of your previous vlogs about your hospital appointments. Thank you for speaking so openly about how you feel, there is a stigma associated with fibromyalgia because so many people are still unaware it exists, or don’t understand the severity of it. Much love to you, from one fibro warrior to another 💜 xx
"Hope is programmed into us"
I love this!
Rest, girl. Just rest and refresh and if you want to search more down the road then do it, but it's not giving up to give yourself a season of resting from searching and doctors. I've been there and I needed that year to just breathe. Just breathe. ❤️
From a fellow fibromite that was diagnosed 14 years ago but has had problems for many years before that, I feel you! The hardest lessons I've had to learn is to be gentle on myself and to let go of those people who just can't bring themselves to understand; all of those that get fed up of you cancelling plans because you just can't function that day or the ones that constantly tell you to "pick yourself up" and at times even the ones that constantly ask "Have you tried this?" ... honestly I wish I had a £1/ $1 for everything I have tried, I'd have a good old spending spree. It's tough living with this condition, the constant pain, the next random symptom that shows up & you wonder if you should get it checked out or not because you get fed up of medical staff either dismissing everything or hearing "You'll just have to learn to live with it" for the 100th time - it's exhausting! But please don't give in ... please allow yourself to explore the extent of your capabilities & find purposes that may be much different than what you may have ever imagined because it's worth it - you're worth it!!! Sending much love fellow fibro warrior, keep fighting the good fight xx
All of that sucks. I also have fibro and am trying to learn how to go on existing. I on gabapentin muscle relaxers and I use your lidocaine cream a lot that has been extremely helpful! Thank you for showing it to me.
But I don't know how to deal with this either. I don't know how to do ok with this. I don't expect you to have any answers. But hearing you talk about all the things that I go through does actually make me feel less alone. I don't know and haven't found anyone else in person or online that makes me feel more heard then you.
I will always thank you for sharing. And sorry we are in this shitty life together
I also have fibro and after a while you start to accept it. Sometimes you have bad days and you try to reject it. But, it does get easier, not the pain but, acceptance gets easier
I pretty much had all the risk factors for developing fibromyalgia and on top of it, I am positive for general joint hypermobility. Now I have to be careful on what work I want to take on. Funnily enough, my old boss from my previous job was not surprised on the fibromyalgia diagnosis. Guess she saw the signs in me because she also had lived experience with fibro.
Sometimes I don't notice I am in pain. But then I realize I am always in some degree of discomfort. I mean...I feel like ibuprofen and tylenol are candy to me at this point. However I know it takes the edge off. Only stuff that works decent is Toradol, which is near opiate/opioid level pain control despite being a strong anti-inflammatory in the NSAID family like ibuprofen is.
I completely understand this whole thing. I also got diagnosed with fibromyalgia a couple years ago and I felt and still do feel all of this. It’s also really hard for the people around me who understand but also don’t because they don’t have this constant pain. Sending love and spoons 💕
My mother was diagnosed with this after suffering for years with it. At 70 yrs old it disappeared. I wish you well. You are inspiring.
I have MS so understand. Lots of pain meds later, I found ginger tea to be some much help. Momming with migraine in Canada turned me onto it. It helps with pain and focus. Invisible chronic syndromes is our community. Energy is a high priority for us. It does teach us to take care of us as a high priority.
I've had systemic lupus for 26 years and fibromyalgia for 10 plus a list of others. Acceptance is a hard thing. Losing your health is a grief. You go through the same stages. Every new diagnosis added comes with grief. It never gets easy.
You speak my truth. I have an autoimmune disease and have experienced a decade of trying to find a way of being the productive and pain free person I used to be. Accepting this isn't going to be is difficult, to say the least. My husband of 28 years couldn't accept this and decided he wanted a wife who could still go and do like I used to. Having an incurable chronic disease, especially one that causes pain, changes your life. Having just one day a month without pain is a blessing. At this point in my life, I question if that one random day a month is enough.
What you're describing sounds to me like getting older and facing mortality as much as making peace with a debilitating illness. I went through some very dark times a few years ago, very different from your experience but equally soul-crushing, equally debilitating, equally exhausting. Your words about being tired ring true on a profound level that people who still live in their youth cannot understand, by definition of being young. When I came out the other end of my own troubles, what I realized was that my old self was gone, and that the life ahead of me was not going to be the life I planned or hoped for. But it will be ~a~ life, and that's the new hook to hang one's hopes upon, I think.
Wishing you strength and new horizons.
Hey, welcome to the fibro club! I have felt so many of these feelings and after 10 years of diagnosis (diagnosed at 15) I have found coping skills. CBT has been helpful. Praying for you, internet friend ❤️
I have chronic migraines and fibro as well. I know your pain. I know your mental anguish during those days when you want your body to be able to do what a "normal" person can do, and how it is especially difficult as a formerly active and athletic person. I feel you girl! Im right beside you on your journey. Lookimg forward to more videos from you regarding this...I've been dealing with fibro since I was 22ish....I'm now 37 and I still am learning about it!
I am on this journey with you! I was diagnosed with fibromyalgia in April and am struggling so hard with this lifelong illness. Thank you so much for sharing and making me feel less alone.
Namaste 🙏. You speak the words that I tried to speak. I am swallowing your words and learning from them . That I am not alone.
Hang in there girl.
I love how you can put things into words that I myself have felt so deep in my soul. I wish that I could express myself these kinds of things to those who love me. The anger comes and goes, some days you'll just be really mad that this is what cards you've been dealt. I hope that you can find something that will help. And thank you for being here and talking with us
I related to everything you said here so deeply. I started having symptoms as an adolescent, and I was finally diagnosed with fibromyalgia in 2017. A few months later, I was also diagnosed with CRPS (complex regional pain syndrome). I wanted answers so badly but getting them was both a relief and absolutely crushing, since there's not much to be done about either thing. It's also tough, because other people in my life don't believe that either diagnosis is real, that there is anything wrong with me. These aren't diagnoses that can easily be "seen" or shown in a lab test, so my family doesn't want to hear about it. I am just lazy and want drugs, apparently. It's SO MUCH to process, especially when others don't support you. My husband was very overwhelmed when I was diagnosed, because he had really been holding onto hope that I could be fixed, and he got very angry that I chose to accept my diagnoses and the fact that they're permanent. He really tried to be supportive, but I could tell how he was really feeling. I understood it. I wanted to be "fixed" too. I wanted my old life back. It's just not my reality, and I can fight that and be angry all of the time, or I can find acceptance so I can move forward with whatever limitations I have. Chronic pain/illness is already miserable...if I allow it to make me completely unhappy, then what? Then I really lost everything. I still have sad days of grieving for my old life, but I don't feel like that everyday. I hope you are doing better now with processing your diagnosis. I am really sorry to welcome you to the fibro club. 💜
Hi. First time I have ever come across your channel. This was an amazing video I am 63 years old I have fibromyalgia I have chronic fatigue syndrome. And I'm going to tell you it does not go away for most people. And yes it's stinks it sucks it's the worst. There are many times that I just would rather be dead. Because I don't know when I'm going to feel good enough to do stuff. So bed is my best friend most of the time. I've had this since I was 24 years old. The good news is you can stop going to all the doctors I know I did it too for many many many many years and then I tried every remedy in the world. I can think of none that worked. This is not to bring you down or be negative. This is to say you can let go of going all the doctors you don't have to keep trying treatments you can just find out how to find joy in your particular individual life. God bless you hang in there. I understand and so do many other people.
Jo, you may not consider yourself this, but you are a blessing to people. That does not mean you have a responsibility or obligation to people, especially your viewers. Just listening to you and knowing how you live your life has given me some peace and understanding of my existence in the world.
I finally got a fibro diagnosis after several years of telling doctors about these 'electric pains' I get out of nowhere, that could last for seconds or hours, that can be sudden and extremely sharp or dull and achy. I was always told "you're young. Lose weight. Don't worry about it. Don't be lazy" and then I almost cried when my new rheumatologist said "hey does this hurt?" "Yeah?" "Yeah it's not supposed to hurt I think you have fibromyalgia."
I told him I had thought so for years. I told him my past doctor told me it was a garbage diagnosis which didn't mean anything. I told him I have too much pain for it to be from my arthritis, and how I always wanted to just push through it.
Everything you're saying about pushing through and minimizing symptoms hits home with me. I am so sorry you're going through this, but I'm glad a diagnosis has been made, and I hope it opens doors to appropriate treatment.
Fibro absolutely sucks.
My wife has it and has hurt for no apparent reason. One of my wife's md called it an invisible disease. I have witnessed it for 24 yrs and have seen how it affects her . But she powers forth and lives with it. Her attitude is the main thing, and she lives on as cheerful as she can be
Mike, thank you from the bottom of my heart for trying to understand, for trying to be there for your wife, for sticking by her no matter what. I know she truly appreciates you deep in her heart, even some days it might be difficult for her to convey this to you. 🤗 My husband decided that FM was changing his life too much, cramping his lifestyle, and he left. You are one in a million... thank you.
I truly understand your frustration with this. I was diagnosed a number of years ago even though there was and is very little treatment for it. When I switched to a new doctor, he asked me if I wanted to have. Of course I said no. Then he said, "Then you don't have it!" That left me feeling very confused. I guess his thinking was that if I didn't have that diagnosis then I would dwell on how I felt, but I've never understand that for sure. Needless to say, I switched doctors. In all of this, the symptoms never changed of course. So I've just learned to pace myself and do what I can to manage things. I hope you have better luck with your doctor as you work through this. Sending gentle hugs!
My boring, uneventful life is such a blessing. Look at all the comments/stories; it breaks my heart: you all are not wrong.
I never fully understood what it meant when people said that health is all we have, until I got an autoimmune disorder. Someone can have everything but if they don't have good health, they sometimes have nothing.
@@anouschka4945 I really do cry, when doctors say it's in your head or there's nothing they can do.
I sincerely hope you find relief and feel better. Chronic pain is no joke. Sending love your way.
Wow. When you talked about being soul-crushingly tired... that resonated. I'm stuck on the road to diagnosis for some problems I'm having following a car accident early last year. No one knows why what's happening is happening or why treatment ideas so far haven't helped (and some have only aggravated things.) Between the advice from friends and family, the continued appts- that I've largely had to handle alone b/c PANDEMIC, the weight of being/having a problem, and the actual physical pain, etc...I'm. Worn. Out. Saying "I'm tired," doesn't fully convey how reduced to nothing I feel. Thank you for this video. I might share it with a few of the louder people in my life who are trying to help but who I'm kinda avoiding because I don't have enough energy to chase down every stray idea.
I'll keep saying this to anyone and everyone here: if you need someone who "gets it," PLEASE REACH OUT. I'll happily send along any of my contact info you'd like to reach out on. Just having one person in your corner who "gets it" can be such a help to your mental health. Knowing you're heard, understood, 'not crazy,' that your struggles are valid, etc is a huge thing for those of us who deal with these types of incurable/genetic/neurological/etc. problems.
You might look into MCAS. I could never understand how injuries or illnesses could be such a domino effect and it explained my whole life, even tho it’s largely still a mystery/most docs are useless about it
I have fibromyalgia too. Onset for me was 17yo, diagnosis at 19yo. I'm 31yo now and I feel really at peace with my body. It takes time. For me, gabapentin and nortriptyline brought me time to breathe and process. I have been on and off meds over the years and things fluctuate depending on how life is going generally. The solution is to find peace with it, and I believe that you will. It takes time, it's a grieving process. The first few years were the biggest emotional and mental weight on me and I really struggled to be OK during that time, I was quite self sabotaging honestly. Be gentle with yourself for the time being because it's a rollercoaster at the beginning. You will get to know your new world view about your body and that intimate knowledge and understanding brings some peace and acceptance.
Good luck Jo, keep on keeping on.
You are a brave and obviously intelligent young woman. I hope you’re able to learn how to manage your disease. I have a friend who has it, and when she realizes she has done too much she just stops and withdraws from whatever she has on her calendar. I hope you’re able to do that. Thank you SSSSOOOO much for telling us about Abridge. I never heard of it, but what a great app!!! My husband and I are in our 70’s and it’s going to be so valuable when we go to doctor appointments. Bless you, dear. Take care.
I relate to this so much. I was diagnosed in 2014. And I went through the same thing. I was so tired. I felt helpless. I didn’t want to live like this. It had a name. But it didn’t really help. I grieved for a long time. So please prioritize you. Do the things that make life feel right. You won’t always have good days but the bad days get manageable. But learning to forgive yourself for resting helps a lot
I was diagnosed with Amplified Musculoskeletal Pain Syndrome (basically juvenile fibromyalgia) in January, and have felt everything that you’ve described in this video. My rheumatologist suggested going to a pain clinic several states away, but I kind of have a hard time feeling like there’s a point. I have a lot of family history that says I’ll never get better, and nothing seems to help, so trying all these new treatments feels just so exhausting. However, your channel has been really helpful to me over the last few months, and I’m so grateful to have found it.
I appreciated this video a lot. I went through almost 4 months with random symptoms and tons of ER trips and miss diagnosis and in the end they did find a severe staph infection in my body so thankfully there was a solution to that but it was months of being told to just continue therapy and that the symptoms would eventually leave. I didn’t have to go through that for years like you did but the months that I was mentally gone after already going through a full stroke in June I can only imagine how hard that was to go through given only 4 months on my end was exhausting because I was so sick from other causes. Thank you for sharing
I so feel you! I don’t have all your other struggles, but I do have fibromyalgia. What helps me to a little extent, is LDN, low dose naltrexone. It takes the worst peaks of my pain, and increase my energy level just a little. But I still have chronic pain, flare-ups and fatigue. And I do need to rest more than most people, to be mindful about what my body tells me, what I’m not able to do. Another thing that helps a little, is warm baths, therapeutic PT in a warm pool, sitting in an infrared sauna (that I purchased), using heating pads, a vibro-massage-mattress, getting massages (when done right, at a professional massages studio), to mention some stuff. If you can be bothered to try more. I totally get it if you feel that you have tried so much, that you’re tired of testing yet another thing…
You could also look into CBD if that is legal where you live.
Best of luck, whatever you choose to try out or not!
Wow. This is so dark, but also uplifting at the same time.
Jo recently showed up as a suggestion for me on RUclips, and I have been watching loads of videos ever since. I love Jo’s ability to articulate what she’s going through, and she has such an awesome mix of serious and light hearted content.
My wife has a bunch of health issues that are incurable, often leaving both her and me exhausted, so I can relate on so many levels.
Jo: should you ever be interested in visiting Germany, please get in touch!
This speaks to me on so many levels. I've been living with a chronic illness for just over a year (CFS/ME, for the record) and I relate so hard on the "I don't like this, I don't accept this, I'm pushing myself too hard to try and resist it and thereby do more harm than good" feeling. It wasn't until recently when my health has taken a pretty sharp term that I really began to recognize how different my life is now. It's hard to come to terms with, and I'm glad you vocalized that. I don't want to give up, but man, I also don't want to do this anymore.
When I was diagnosed with MS, I forced myself so much to be "positive" that I didn't adress what my actual feelings were. I remember being so proud that I hadn't cry one single time. And you know what? I should have let me cry, because if you don't cry when you're diagnosed with an uncurable neurodegerative condition, then when are you supposed to do it? There are moments when is ok to be sad.
It hasn't been until this year, three years after the diagnosis, that I have started to work with a psychologist in actually adressing what was going on (I was in treatment briefly after the diagnosis, but the moment things got a little intense I quit) and only because the suicidal thoughts started to get pretty scary
have a couple of decades on you, but was diagnosed with that myself, along side hypermobility when I was a teen. it is a difficult one to deal with, but be you. at the end of things keep your attachements to people, a mistake I made a long time ago, listen to your body and keep it in as reasonable condition as you can, but dont over do it too much, again I let myself go and regret taht. with me as long as I dont take my bad days out on others I think I am not doing too bad, but it is tricky at times (and when someone pushes too far it can be tempting to use them as a relief valve.... but I try to resist taht). your videos already will help some others with these issues, but can be useful sometimes if there is a medical school to see if you can help with their training of doctors, to help both educate them on seeing the zebra in the herd but also what it is actually like from the patients side of things. for example they have a normal expectation of pain and response, which we dont have, as your Kidney infection demonstrated very well, and it can be a real eye opener for them to learn. good luck with finding what works best for you, it could be a nice hot tub to par boil your pains away after you push too far, but find something nice if you can it helps. (have often said I need an office hot tub not a better office chair)
Having support when you do go through some very dark periods is very important. I've lived chronic severe pain for 25 yrs. There have been some dark days. Sometimes just connecting with a friend that has similar interests has helped pull me out of it.
I feel for you ❤️ I’ve had Fibro for 12 years now, starting at 20 years old, and it took me 31 years to get it under control. It feels like that Survivor challenge where you’re balancing in the ocean on top of a wooden stake. For ever.
I found I maintained my sanity by not believing them when they said it was forever. And it really had improved, for me, with diet, exercise and careful lifestyle balance. I know it doesn’t work the same for everyone, but to anyone else with Fibro, Low Dose Naltrexone and CBD oil changed my life. It’s a hard journey, but it makes you better, and you really can live a life really close to normal
I'm 72 and i've had FM most of that time. You dealing with your amputation has inspired me with my FM.it is workable
Managing my fibromyalgia is a constant struggle but since knowing I have it it has helped me to accept more aids like using a wheelchair when having to walk long distances or needing more time to rest. It's hard to know that it will possibly never go away but I do feel like I can allow myself to have hard days and knowing does also allow me to look into how I can have a better life with the pain. I hope you will find your own way to manage this in a way that works for you!
I don't want to compare my mental issues to your struggles with a nd restrictions you have due to your body but listening to you really helped me with my mental issues right now and for this I want to thank you. Just 3 weeks ago I learned I have ADHD (the inattentive type) and besides having c-ptsd I still struggle a lot with lots of things in daily life. Being almost 40 and finally having a diagnoses and explanation for so many things I know also feel like I can stop fighting against myself and finally learn how to work with those things as they are here to stay (whether I like it or not). Until now I always thought there might be something I can do be more "normal". Now I realized that my brain has all these reasons why it functions differently and I will try to be more kind to myself instead of always pushing, apologizing, being ashamed etc
Wishing you all the best!