Thank you my brother for explaining your fibromyalgia. This disease hurts like hell. I am 72 yrs old. I have suffered with this for nearly 20 yrs. I have gone thru all the humiliation that medical professionals dish out due to their ignorance of the disease. If it weren't for medications, and certainly Jesus Christ I would be found curled in a tight ball on the floor crying my eyes out. I am a 205 lb man. Worked construction all my life. Worked hard all those years, but I am no match for the forces of this horrible thing. I find that all stressful situations only aggravate the pain more. I can tell you 2 to 3 days before a weather front comes in. The awful burning, nawing, pain. Freezing one minute and burning up the next. Body so sore you can't stand to cover with a sheet at night. Can't sleep. Can't think. You never know when a flare will hit. Horrible . I am so compassionate toward any one who suffers with this monster. God love you all.
I have been reading your channel. I found out I had Fibromyalgia in 2014. What a night mare! I had started a new job! I'm still there but some days are better than others. Brain fog, weak, tired. Etc. I pray all the time and ask God to help me. Also my train of thought can bug me. Cold chills and aching all the time! I will pray for all of you and wish you well.
James, I love your channel. I have recently been diagnosed with fibromyalgia and I didn't know what was happening to me. I get brain fog, twitching eye, leg cramps, constant back pain, headaches, stuttering. It takes me forever to make videos now. Stay strong and praying 🙏 a cure comes for this.
I've just been diagnosed to and have same symptoms as you, my stuttering gets realy bad at times and find it difficult to get words out, very frustrating at times
@@jonathanwalton9528 and it's so difficult to explain to family because they just don't get it because we don't look sick. But the constant pain lets us no we're not well.
Oh my gosh! I have been having these same issues too. My eyes get all twitchy and lately I have begun shaking and stuttering. Dry mouth and brain fog is the worst.
I've had Fibromyalgia since 1982, 42 yrs. It's brutal and life altering and debilitating. I've spent the last 42 yrs researching our illness. To be honest with all who read my post medical science is no closer to a cure let alone an effective treatment. Infact no doctor or scientist can absolutely 100% be certain exactly what it is, where it comes from or how it got here. There have been multiple theories or plausible or scientifically acceptable general principle or body of principles offered to explain this phenomena but no one can state they are true or correct. It's all a guessing game.
Whassup James. You know we love your content buddy. To the others that suffer we promise you’re not alone. Those that say the brain fog is terrible, it’s the worst isn’t it 😢 not able to get your words out or think about things properly is horrible. Stay strong all ✌️❤️👊
My skin will also burn 🔥 and feel like it is raw. Even my hair touching it hurts. Another thing weird is it hurts to put glasses in my head … like sunglasses. My scalp is so sensitive.
Right now I am laying in bed, watching this, and having fibromyalgia pain 20 out of 10! My nerves are jumping, my legs are throbbing, i went to the gym today, just to give myself more pain lol! I’ve had this since I was 17, and I’m 62 now! Thank you for this video, gonna forward it to my family, don’t think friends nor family understand the fog, the pain, the staying in a lot etc! So thanks
I have often wished over the years that thousands of doctors would get fibromyalgia so they would take my pain as seriously as I do. At least nowadays it’s actually recognized as being an actual disease. Unfortunately most people have never had the flu. Most people think they have…but they haven’t. The flu lasts a week to two weeks and it’s brutal. The flu comes on like a freight train. Fibromyalgia is worse. Fibro comes on slow and builds over years. In my case it’s gotten worse over the last 15 years. Storms make me feel like I’m dying. I cant walk to the gym these days. If I found myself at the gym I’d have to lay down because I never have energy. The one thing that is predictable about fibromyalgia is that if I do have a good day I’m going to pay the next day. There’s no such thing as two good days in a row. I’m going on 20-25 years now and it sucks. EDIT: if you are one of those who think the brain fog is the worst, think again and wait! Your years will tell a different story.
I can relate to this so much. I too feel as if I'm dying during storms which living in fl. doesn't help cause its every day here during the summer months so its literally like 3 months of hell for me. I always feel so bad that I have no energy or patience or will power to get up and do anything anymore because of the pain and what I know will inevitably be a bad day if I do end up doing something
@@Thephantomewell Pain sucks all the strength out of you. Sometimes I get angry and force myself to do something that takes a small amount of strength and I swear I feel better afterwards even if it’s only a little while. This thing sucks. It’s about to storm here in 15 minutes, oh boy another fun day.
@@davidt8438 Ive actually noticed the same and wished I could have that burst of anger to just get up and get going and then it can go away lol but unfortunately for me anyways it never seems to work that way :) but same here with the storm its been every day here for the last week and a half or so at least once a day where I live in the summer but thank you so much for the response to you and everyone who all commented cause it was nice to see some of the symptoms that wipe me out completely also takes out other people the same so it made me feel less weak and useless to be honest I feel bad for those people too but I always felt like maybe I was just being a weakling
OMG, i get the eye twiching thing in my right eye, which will flare up for weeks on end. Brain fog too. Hot humind, or damp weather makes pain worse. I get muscle spasms, electric shocks, tingling and numbness. My back feels sunburned and itchy. My legs feel heavy and weak. Tired all the time, and cant do things like cleaning for very long the way i used to spend 6 hours cleaning before fibro. I get blury vision at times, and outer corners of my eyes water on and off for days, same with tinnitus and costochondritis (rib pain and in chest). Pain has also recently become deeper as well, and even more painful for 20 seconds in one spot at a time...i rub area and it goes away in that spot. I use Voltarin and heating pad a lot. Cant seem to regulate body temp on/off. Sometimes my feet and hands (mostly mt feet) will feel freezing inside and takes hours to warm them up, other times, if hot out, i get easily overheated. My sleep is horrible, case in point, its 3.57 am and ive been up since 1.20am, having falken asleep at 11.30pm. My brain fog comes and goes. I get dizzy and feel like im swaying inside with balance. Feel weak and exhausted every day, but some days are better and i have more energy and strength and will try to get extra stuff done. I do get high anxiety for days at a time, but it comes and goes as well. I do not wish this condition on anyone. I used to ge so active and very fit, now i cant move enough, can hardly even walk. Glad you still can get to gym 😊. I know, if on a good day, i stay moving and busy aroubd house, or out shopping or both, as long as i stay within 4 hours tops, on a good day, it does seem to improve the overall fibro symptoms...just cant overdo it, or it suffering for days. Nights seem to be THE WORST, for whatever reason. To all who suffer, sending you gentle hugs. ❤
Same for me, and it sucks because to everyone I look fine and healthy, but the inside with all of the above, the pain, fibro fog, itching etc that people can't see...they think it's just made up. This is why it's called the invisible disease. Prayers for all with fibromyalgia and any disease 🙏
I have had Fibromyalgia for donkeys years and have found no really helpful treatment. When i travelledmon the bus i would sit in the disabled seats and often received some abuse, comments like "youre not disabled" "you like fine to me" so i bought a tshirt which informs people what i have, i also bought a badge on a lanyard that basically says the same, so when someone questions me on it, they can read the tshirt or the bloody badge. Not all illnesses are visible, thentshirt and badge have really helped. I feel more vulnerable, as a woman now, because i cant run away from trouble, keep your chin up. I get a really sharp stabbing pain in my eye which makes me scream out which is so embarrassing lol😊
Recently diagnosed. The worst is the brain fog...how do you explain to people what it is like to lose your thoughts right in the middle of a thought. Thank you for sharing.
I warn people that I can lose track. Usually, if I'm honest and tell someone that I lost part of the conversation, they're pretty swell about repeating it.
I was diagnosed with Fibramyalshia, SLE Lupus RA. kidney damage. Radiculapathy, periphial neurapathy etc the list goes on joint pain. Chronic fatique, swollen lyph nodes, tiez syndrome insomnia to name a few. For me meditating on Gods word, renewing my mind daily in Christ. exercise, diet & staying positive is what helps me Stay encouraged! Prayers for everyone dealing with these conditions.
I cried all the way home on the bus today after my work 🥺 it's so debilitating and people don't get it I can't afford to not work stuck in a horrible situation
Me too-cleaning homes and supermarket cashier-now hands sudden extreme arthritis-so I get you. I go home and just try to exist -and I’m usually very sunny happy person. 64. Energy than total exhaustion. I know it’s age too but it’s getting to point where I just can’t do this-looking for better work. Meditating stretching with SHAOLIN master Shi Heng Liand setting firmer boundaries when others need me to visit when I can’t at night. I do t want to watch tv with my friend I just want not to feel like crying and have any control over my brain and body. Sorry for lonooonnnng rant. Hope all suffering find solutions..✌️
Also I have constant back pain so I'm doing exercises right now to help, hope your ok just take each day as it comes and if it's too much just ask for help or step back a bit
does anyone that has fibro suffer from anger issues because of not being able to think straight or do things you once were able to do it just gets so frustrating and I feel worthless and like I have nothing to offer anyone anymore I quit dating I quit going out and have lost a lot of my family and friends do to being unreliable or pissed off all the time or hurting too much to participate so im passed over generally out of pity or respect for the pain. I really do feel alone I know there are a lot of people going through it too and it helps to know im not the only one that has those thoughts but what do you guys do for the real time actual loneliness? it's been 4 years since the girl i was engaged to and had been dating for 8 1/2 years left me right after a spinal fusion surgery and was at my lowest. I haven't dated or bothered looking for another partner although I would love one and miss having an awesome companion. I just feel like I can't really offer them a normal life and feel like I don't really have anything to give anymore. does anyone out there feel this way as well?
@@Thephantomewell I hear you and I feel your pain. I’ve always believed that if you can’t entertain yourself then you can’t entertain others. I’ve learned to accept the loneliness by reading books, learning new information on the internet and watching movies…lots of movies. I’m sincerely sorry to hear your girl left you. Always remember there’s somebody for everybody out there. You may not be able to offer them a “normal” life but you can certainly offer them a companion. I’ve been through the left out of family functions thing and I just try my best to eat right, get a good nights sleep, and rest up for days before I attempt to do a family function like Christmas or a special family members birthday. I don’t try to go to everything and they don’t invite me anymore anyway. I invite myself to whatever function I think I can make. Don’t stay in your head too much. Stress makes the pain worse. Nobody is worthless. I’ve been lucky because I married years ago and I’m even luckier because my wife doesn’t pressure me anymore. She has learned to accept my condition and I even push her to go out and have fun. She rarely does and I feel guilty about it but I don’t beat myself up over it either. I now live for the good day or two I get every year. Of course I over do it on those days and I pay for it afterwards sometimes for a week or two. But I still feel life is worth it. Become your own best friend again and live for whatever you can get. You only get one chance. I hope you can realize that anger won’t do anyone any good and it actually will make things worse for everyone. I do a lot of apologizing still to this day for my inability to join in but I say it once and move on. If that’s not enough for someone then they have the problem not me. Good luck
My fibromyalgia started at 37, when my father died. Life’s been painful and crap ever since. This guy hits the nail on the head. Wishing you healing my friend.
Its the most life changing experience you wake up your brain is telling your body please dont ache please move constant pain some days you can function flare days just steal your thoughts your time your life so many symptoms , it took 4 yrs for me to get a diagnosis there's not enough support, you feel that everyone around you is sick of seeing you ill but they support me and love me, but in your heart you feel like your letting people down , i have to say until i was on my medication i couldn't even turn over in bed took an age just to get up into a position to get out of bed , the medication has helped me but im on a 6, month waiting list for pain management in total ive waited almost 2 years for this help ... Keep 💪💪
25 years ago getting a diagnosis was very difficult. I saw 9 doctors all of whom treated me for anxiety. It was a battle for many years with most medical personal who would tell me if I exercised I would be fine. I could talk forever on what this did to me a person. Finally a diagnosis from my family Dr who did the leg work. This was 25 years ago. I have suffered all those years alone and in pain. You are so right about the brain fog, OMG you feel so stupid. As I age I have chosen to laugh about it. The pain is increasing as I age and fear of being wheelchair bound consume my life. This is a sentence not unlike prison!
I'm coming up to a year of been diagnosed with fibromyalgia and still a learning curve knowing some of the symptoms I get is it fibromyalgia or something else and I'm so shocked how little support get from the doctors every day is a battle been in so much now effecting my ability to walk I've come so close to having a breakdown due to the pain and not been able to do things spend times feeling like a failure with the amazing support form my family I've learnt that it's fine if have to spend the day just resting and hopefully try again the next day you do so amazing at getting your point across what it like living with this painful illness your videos are helpful
Finally you got to explain what fibromyalgia, ive been suffering with it for the last 17yrs, restless legs, back spasms, exhaustion not been able to sleep, legs feel like your carrying weights, flare-ups where you cant eat, depression, anxiety, severe headaches, muscle pains, brain fog, God bless all who suffers from this debilitating disease 🙏🌹❤️☘️
Hello James thank you so much for your content, I recently found your channel and watched all your videos . I was originally diagnosed 20 years ago with fibromyalgia. Initially I struggled with my symptoms for about 3 years before , I got back to work full time back then and have always worked , until recently I hurt my spine that was it my fibromyalgia is back full force and surprise I find myself being sent everywhere for tests again . Like you I’ve also had something show up on my liver , I don’t drink ! I had a raised ALT turns out it’s liver cysts . I too get the red rash on my face , the sun made me feel really unwell last summer , I love the sun normally. Like you wondered if it’s Lupus I’m currently waiting for a Rheumatologist appointment. But I’m so thankful for your explanation of symptoms as I would not of connected them to fibromyalgia , so one again thank you 🙏
I also have Fibromyalgia. The constant pain and discomfort alone gives Me a fatigue and exhaustion that is all consuming. Like You said, some days there are absolutely nothing you can do or be done. Duloxatine has helped me a great deal with the stiffness.
"Pain, pain, go away........NEVER come back another day......" - but it does 😢, and it will, just as it has for the last 40 years! I'm so tired of being in constant high-level pain as I am in atm due to a major flare-up! Thank you, James, for bringing awareness about this generally-misunderstood illness, and its impact on the lives of those trying to live with it. Yes, we are "fibro warriors" - we are in a constant battle with our bodies, but we will not let this disease win. We continue to struggle each day.......
I get this delayed fatigue, after almost a year being bed ridden I was finally feeling better. I learned to pace myself. My Doctor increased my amitriptyline to a higher dosage (I might as well be taking smarties now) but I actually thought...its gone I think I'm better I had low pain and very little fatigue for day's, then all of a sudden , knock knock aul fibro is back 😢,and I'm bed ridden for day's. It was like a game of snakes and ladders. I'd feel good for a day or two and I'd push myself physically because it was a delight to have energy to be able to shower to stand for that long without pain in my feet, my ankles, and my shins, without feeling like my body was carrying around weights or bags of cement to actually have the strength to lift my arms and hold them up long enough wash my hair. So I pushed again until I learned myself about delayed fatigue, so I'm trying to pace myself and its hard because the minute you have a bit of energy or low pain you just want to RUN with it but the you get the reminder that your body is restricted, and its back to pacing. It's so difficult for others to understand when we look physically well and appear to be in no pain at all. They don't realise we could collapse on the sofa after a visit or a day out . I feel like I'm rambling on hear and I'm loosing my train of thought. So basically in a nutshell careful of the snakes and ladders 🪜sineario guys and remember to pace yourself 🤗
FYI: SSRI medication has no proven effectiveness in treating FM. The body is not lacking Serotonin. Doctors give us Amitriptyline thinking we suffer from depression which we do not. I had widespread pain years before I had depression. I only became depressed because I was in constant pain. I've been ill for 42 yrs, since 1982. They are no closer to a cure or effective treatment then they were over a hundred yrs ago. Fibromyalgia was just call something else back then. They gave it the name Fibromyalgia because it's most prominent symptom was widespread pain throughout the body. It's not killing us so science has no time nor money to look for a treatment, cure or research it when only 1% of the world population has it. I wish I could tell everyone something positive about the medical community helping us but then I'd be a liar.
The worst symptom I get are these profuse night sweats with hypnogogic hallucinations (swirling kaleidoscope patterns and shapes when you are on the edge of sleep) They're bloody horrible, scary and nauseating and you just have to get up, sit on the bed and wait till they subside. Emotionally the worst thing is that nobody can see what you're dealing with. People just think you're overexaggerating all the pain and fatigue. Like I'm making excuses all the time.
Thanks so much for this James, i relate so much, it’s helped me feel less alone, the people in my life just don’t understand, sending love from Ireland 🇮🇪 ❤️
Doctor's will not diagnosis me with it. I just had a flare for 3 days. Felt like the flu just like you said. Basically no fever but slept for all day and stiff with tender skin and brain fog. And worst part is that I can not get disability for it so I have to work as a single parent. It sucks. Thanks for the video, we are not alone!
Hi James, thank you for sharing. I’ve had fibro most of my life. Got diagnosed about 20 years ago. And yes like you I get people looking at me and I’ve argued with old people when I park in a blue babe space because of my other problems. They are like there’s nothing wrong with you. And the stress flares me up. So I try not to argue with them. But yes on a slightly good day and try and do my housework etc then it’s back to the sofa 🥲I to do a little at the gym with my son to help me keep moving. He’s amazing. It’s taken me ages to write this because of my Brian fog. But I don’t let it win. I keep at it. Take care
Unless they are your doctor, they need to shut up. I almost went off on an elderly lady bec I was parked in handicapped parking but we appear fine. Appear being the operative word. Just like ppl in a casket look fine.. they are still DEAD.
Thank you for this video I identified with you so much the unpredictability of it is always there I have to cancel so many arrangement and hope my friends Understand and believe me sometimes I feel so lonely x
I have been living with chronic pain, neuropathy and exhaustion since 2006… finally diagnosed with fibromyalgia this year(!). I have a bunch of red herrings, herniated discs/stenosis/food sensitivity/hormonal changes etc but I think it’s really wild that it’s taken so long for a Dr to actually diagnose fibromyalgia. I know a few things that cause flares now… spicy food (which I love but can no longer eat) will cause gut pain for weeks. Massage (which has always been a favorite indulgence) now causes Massive neuropathy flares which put me in bed for days and linger for weeks. And the heat is really rough for me now…challenging because I live in southern Arizona, where it’s crazy hot 6 months of the year (we are moving as soon as our son finishes school) Thank you for this video- I’m still questioning if this is truly fibromyalgia, but hearing everybody’s stories at least makes me feel like I’m not alone.
I am so thankful for your video. It is difficult for family and others to understand because let’s face it, what we experience is simply not logical. Makes no sense at all. It is still hard for me to understand. Frustrating and annoying are 2 things that comes to mind. And certainly inconvenient! I hate having to cancel plans at the last hour because the pain, or headache, or foggy’ness just pops up suddenly. Fatigue. Ugh. But, more and more people are understanding this syndrome because of videos like yours. 😊
Yes, my mothers has had it her entire adult life, and my small symptoms started in childhood and progressed. I say FMS has complicated my life for over 40 yrs. My mom was a nurse, and I think that helped us learn how to adapt best we could with it. Can’t come down to hard on medical staff as, the nature of this is constantly changing and effecting us differently. If we can’t predict flares, how can they? It does get frustrating through when seeing new NP, we don’t have any drs willing to work in our rural area. They give you the basic suggestions, and it’s hard not to laugh at them, when they are young enough to be your kid, and you’ve been trying their suggestions to the best of your ability for longer than they’ve been alive. During this last 2 yr flare, when pains get off the chart, it would be nice if I had someone right then who could remind me of the tools in my Fibromyalgia Tool box to try. Cause after a few hrs of 12 on a 10 scale, I’ve realized later that gee why didn’t I try the oils, or the cold pack, or rice heat, or epsom salt soak, or barefoot in grass…etc. My biggest issue is the hypersensitive/hypo sensitive to anything…including medications, which means pain meds don’t usually work or I have a reaction that’s not worth it.
I have been living like this for about 4 years. Doctors send me for Physio. Now they are sending me to a Rheumatism specialist. No one wants to believe me. I am 80 years old with Diabetes type 2. IBS which I have had for 25years. You describe exactly how I feel. Thank you.......
Thank you for the way you explained this. I've been trying to put Fybro into words for my family but it's so difficult.Support from loved ones makes such a difference. Whishing you well❤
Thank you so much. It is infuriating living this way, especially when no one understands how you feel. It is so refreshing to know that someone goes through the same thing. You understand. That is amazing.
James. I've just found your channel and have subscribed. It's really unusual for guys to have Fibro ( my friend Martyn has it too, and we were both professional musicians, but fibro robbed us of this ability 😢). I'm having a flare today - 'fluey' and knackered.. You know what it's like. Hope you're having a low pain Bank Holiday 😊Best wishes from the Welsh Borders, UK.
Thanks for posting this, James. I've had fibromyalgia for 24 years. All of us who have it know what it's like & how horrible it is. I think the way you've described it is very helpful - thank you.
Thanks for sharing your daily experiences. I just got diagnosed (finally) last week. I get every thing you mentioned but also I get severe knee and leg pain when I walk which without medication would leave me immobile. I wish I could go to the gym, bike, rowing etc is behind me in the past but I may try swimming. It's good to know I am not alone mate. Hang in there.
I have had fibromyalgia since 2013. You described the symptoms so well! I have tried to tell my kids about fibromyalgia and why I don’t always make it to family gatherings or other events, but I am told that I am making excuses and nothing is wrong with me.
It does help that you're not alone. I was diagnosed with it 23 years ago after a year of drs telling me nothing was wrong with me. Thankyou for sharing. 🙏 ❤
I was diagnosed with Fibro and CFS. I did not have these. I had chills, aches and pains in muscles and joints, low body temperature, so weak. Well, if your thyroid hormones are low, your body cannot function properly! and it can also be your thyroid is making enough hormones but you can become resistant to it, often due to dieting, too much exercise and high stress/cortisol. what I had was low hormones and low thyroid and high cortisol. I was vigilant in getting help and a naturopath decided to try out HRT and added thyroid hormone. within 6 weeks I got great improvement. 14 years later at age 63 I am cured. I have no more pains or stiffness or fatigue or brain fog. I am slower that I was of course I am aging, but I went back to work, I exercise daily/gym/spin, lost 106 lbs, all thanks to hormone replacement. dont just get your thyroid tsh checked. it took a full thyroid panel to determine I had low free t4 and low free t3, and of course at age 51 no more sex hormones...
We fight on. And on. And we MUST. It’s a shit as so few people actually understand or can empathise. How could they? Worst part of it all for me is frustration. I’ve always prided myself on my ability to undertake projects and restorations. Its been my life line and kept me sane in a increasingly stressful and complicated world. The periods where I am unable to function, think or even walk are emotional killers. Even holding a book can be impossible. This is the blackest interpretation of my condition. More funding and research is needed as I predict that our numbers will only increase. Stay strong folks!
I just left the doctor today after having a torn labrum repair a degenerative disc in my neck pelvic tilt in my lower spine joint popping in every joint in my body neck cracking headaches and days I can’t breath bowel problems and on top of that I have Grand Mal seizures most of my life to finally find out this is what I might after all my test for rheumatoid arthritis and blood test come back fine I really hope there’s a answer for this I just want my body back
That's correct you hit it spot on man I'm telling you thank you Atlanta Georgia my wife found it her own private message back in the nineties the early nineties when there was no one she found her own fibromyalgia when nobody else was there to help her Plus osteoarthritis etc. Just tried just try to take care of yourself and eat more fresh vegetables in prey meditating and rest. G-d bless you. Thank you 😢
I have a marvellous GP who takes fibro very seriously and has warned me to go and see him if there are any changes because ' not everything is fibro '. Isnt he a star? Ametryptellin ( I know the spling is wrong - apologies ) keeps my pain manageable and gets me to sleep ! Thank you James for an excellent break down of fibro, the invisible set of symptoms. ❤
It really is a horrible thing to have, I have had it for 20 years, think was after breaking my back in a fall and a divorce. People do not understand it, if tou tell people they think your moaming minnie. I had bad flare up last 6 weeks, tingling all over, went to see doctor,.and said do you think it's fibromyalgia getting worse, she just looked at me like i was an idiot. She was one of those doctors that didnt believe in fibromyalgia. Look after yourselves much love, Catherine
One of the hardest things for me is being unreliable. It's not my fault, I know, but I feel badly when I let people down. So, I tend to avoid making commitments that I might not be able to keep.
Hi 👋 James, im new to your wonderful channel here on Fibro..I just came across your channel and find it sofar to the point info on everything about it as u can tell us all.The full..Heads Up on this awful painful condition..gentle and friendly nice huggs to u hon.❤❤❤love your awesome accent as well. You British or Australian. Im guessing..British..sweet anyways..ill keep watching daily keep posting ok.much love from me..Nancy from Jacksonville Florida..USA❤❤❤
I'm a COVID long hauler but as time goes on (3 years and counting.) I seem to be left with multiple autoimmune responses. My hands arms and spine are the most unrelenting but I also experience restless legs and frequent body temp. Changes. I'm still in discovery as my ANA blood work didn't indicate much. I'm having an awful time with getting a proper spinal exam and have endured tests that were almost worse than the illness. My sneezes can lead to vomiting and my appetite is almost no existent. I gained weight in the last two years due to lethargy but have lost most of it ,just by eating autoimmune diet. That's been helpful for the most severe symptoms. I have way more migraines nowadays. I know COVID caused this but I'm still trying to cope with not knowing the long term prognosis. I feel like I literally live one day at a time. Regardless of what the world demands. My family is estranged. Guess they couldn't accept what I already have. This may be my forever. Relationships are few but prescious. I appreciate everyone and everything such as I never have. Not being able to work after two terrible years of the pandemic costing me my business, marriage, family and health, I don't see the world the same. Still fighting for social security because this illness doesn't present normal or conclusive test results. Not sure how I've hung on but I have. Moved some place warm, and started up with the endless tests and a lack of understanding from most of my care givers. You have demonstrated the very issues I deal with. Like losing my train of thought or not comprehending parts of what someone is saying to me.
I am sorry for all your losses. I started the process to fight for SSI but came to realize it would be such a n uphill battle, as I suffered with it for years but did not go in to see doctors for every thing. It cost too much and our insurance deductible was too high. So, I stopped the process. I don’t have the energy to do it. Thank God for a loving husband ! He knows, but I am sure he wishes I was working and earning money for us, too.
I had FM on and off for 15 years, was on a wonderful low pain few months...then just had a mild virus that was a bit grotty for a few days, and then bam! Epic Fibro pain everywhere 24/7 for 3 weeks post virus now....shoulders, neck, arms , legs, the whole lot. Lovely. Only relief and only way to actually rest is Ibuprofen and CBD oil. Only thing that keeps you going some days is knowing you're not alone and you're definitely not mad, or making it up
I describe it like a wretched flu and fatigue you cant push through. The pain is constant. Then it keeps you from sleeping. Its debilitating and a vicious cycle. Just taking a shower can be the goal for the day. It takes me a month to do what I did in a day. At least. Ability to function is severely impaired.
I just found your channel. I have my very 1st appointment next month. I waited 2 years. How is it diagnosed?? I will look through your vids. I only have youtube.
Could you do a video either in the gym or on the gym. I am 21 and before my fibro started I was in the gym 3 hours over 2 sessions everyday and I was in really good shape. Now in the last 2-3 years I have lost so much muscle and weight since and now if I go to the gym I just come back and wait for the flare up to begin.
Fibromyalgia is now affecting my bone structure. I broke both hips. I am still struggling with my leftside hip. I am getting a hipreplacement in August.
Layer upon layer of pain. Muscle stiffness, tenderness and cramps. They say duloxetine and amitriptyline cause nerve damage. Active forms of vitamin Bs can help with nerve repair after many months of use. I am currently trying the Vit Bs but haven't seen benefits as of two months so far. Will continue for six months to see if any benefit. Mega dosing on vitamin D didn't work for me.
I have suspected fibromyalgia and my question is how do we make it through a normal work day? I get so tired my eyes cross and I cannot think sleep or focus and not to mention the pain. What do we do?
Hi I have had this for nearly 3 years now and my life is totally changed, just been diagnosed with it but doctor says I have to just live with it, am at breaking point now, every day is pain not sure what to take to ease it, just need help 😢
thank you for sharing i went doctors thinking my arthtitis had spread i was sent to hospital the consultant told me i had fibro and i think i mite have a leaflet on it if not go home and look it up because of how he treated me i went private for a second opinion just because of how i was treated i didnt trust the doctor
It's like a knife stabbing in your muscles or a gun shot wound legs severe not stop around the clock every second day months of tithis please get it right brain fog least problem screaming pain the worst
@@Truerealism747 My ADHD and OCD was formed in the womb, so I can’t change that but learned how to use to my advantage thank goodness the OCD keeps me on track. I recently quit all off the shelf hygiene products and in the second week my chronic disease of insomnia of 8 yrs ,just went away ……. I think and move to fast because my Adrenal glands over produce adrenaline hence the ADHD and not ADD. Before the 50’s there was almost none of these so called diseases and everyone on Earth ate Organic foods without Chemicals in it !!! glyphosate gave me celiac disease and peripheral neuropathy, and with atrazine it gave me fibromyalgia all chronic ! Now I’m pain free and living life again not in the confines of bed and wheel chairs. Hope this finds you well and helps even a little ! Share and pay forward , Tim .
"I hope you are having a low pain day" that is the best thing I have ever heard
Thank you my brother for explaining your fibromyalgia. This disease hurts like hell. I am 72 yrs old. I have suffered with this for nearly 20 yrs. I have gone thru all the humiliation that medical professionals dish out due to their ignorance of the disease. If it weren't for medications, and certainly Jesus Christ I would be found curled in a tight ball on the floor crying my eyes out. I am a 205 lb man. Worked construction all my life. Worked hard all those years, but I am no match for the forces of this horrible thing. I find that all stressful situations only aggravate the pain more. I can tell you 2 to 3 days before a weather front comes in. The awful burning, nawing, pain. Freezing one minute and burning up the next. Body so sore you can't stand to cover with a sheet at night. Can't sleep. Can't think. You never know when a flare will hit. Horrible . I am so compassionate toward any one who suffers with this monster. God love you all.
@@billgarner-pq6ic take Ambien for sleep
I have been reading your channel. I found out I had Fibromyalgia in 2014. What a night mare! I had started a new job! I'm still there but some days are better than others. Brain fog, weak, tired. Etc. I pray all the time and ask God to help me. Also my train of thought can bug me. Cold chills and aching all the time! I will pray for all of you and wish you well.
James, I love your channel. I have recently been diagnosed with fibromyalgia and I didn't know what was happening to me. I get brain fog, twitching eye, leg cramps, constant back pain, headaches, stuttering. It takes me forever to make videos now. Stay strong and praying 🙏 a cure comes for this.
I've just been diagnosed to and have same symptoms as you, my stuttering gets realy bad at times and find it difficult to get words out, very frustrating at times
@@jonathanwalton9528 and it's so difficult to explain to family because they just don't get it because we don't look sick. But the constant pain lets us no we're not well.
Oh my gosh! I have been having these same issues too. My eyes get all twitchy and lately I have begun shaking and stuttering. Dry mouth and brain fog is the worst.
@@TheBegleybunch , yes I get dry mouth as well. It is so annoying to constantly have pain that moves from one area to another.
Many of these symptoms are reminiscent of MS
I've had Fibromyalgia since 1982, 42 yrs. It's brutal and life altering and debilitating.
I've spent the last 42 yrs researching our illness.
To be honest with all who read my post medical science is no closer to a cure let alone an effective treatment.
Infact no doctor or scientist can absolutely 100% be certain exactly what it is, where it comes from or how it got here.
There have been multiple theories or plausible or scientifically acceptable general principle or body of principles offered to explain this phenomena but no one can state they are true or correct.
It's all a guessing game.
Omg. Not only did he hit the nail on the head with everything we go through, he even has the same eye twitching thing that I do!
Whassup James. You know we love your content buddy. To the others that suffer we promise you’re not alone. Those that say the brain fog is terrible, it’s the worst isn’t it 😢 not able to get your words out or think about things properly is horrible. Stay strong all ✌️❤️👊
The fatigue, memory lacking, ITCHING, pain, and pain. Just sucks. Learning more from forums and videos as this than what my Dr has provided.
I never knew the creepy crawlies and the itching was from this. I thought I was going crazy!
Yes, the ITCHING flares are horrible! Always at night, and they last for weeks. Random and infuriating
My skin will also burn 🔥 and feel like it is raw. Even my hair touching it hurts. Another thing weird is it hurts to put glasses in my head … like sunglasses. My scalp is so sensitive.
@@tinam761 wow am so sorry my FM friend. The weathers rainy/window and I just want to stay in bed the pains so bad
Right now I am laying in bed, watching this, and having fibromyalgia pain 20 out of 10! My nerves are jumping, my legs are throbbing, i went to the gym today, just to give myself more pain lol! I’ve had this since I was 17, and I’m 62 now! Thank you for this video, gonna forward it to my family, don’t think friends nor family understand the fog, the pain, the staying in a lot etc! So thanks
I have often wished over the years that thousands of doctors would get fibromyalgia so they would take my pain as seriously as I do. At least nowadays it’s actually recognized as being an actual disease. Unfortunately most people have never had the flu. Most people think they have…but they haven’t. The flu lasts a week to two weeks and it’s brutal. The flu comes on like a freight train. Fibromyalgia is worse. Fibro comes on slow and builds over years. In my case it’s gotten worse over the last 15 years. Storms make me feel like I’m dying. I cant walk to the gym these days. If I found myself at the gym I’d have to lay down because I never have energy. The one thing that is predictable about fibromyalgia is that if I do have a good day I’m going to pay the next day. There’s no such thing as two good days in a row. I’m going on 20-25 years now and it sucks.
EDIT: if you are one of those who think the brain fog is the worst, think again and wait! Your years will tell a different story.
Yes all this
I can relate to this so much. I too feel as if I'm dying during storms which living in fl. doesn't help cause its every day here during the summer months so its literally like 3 months of hell for me. I always feel so bad that I have no energy or patience or will power to get up and do anything anymore because of the pain and what I know will inevitably be a bad day if I do end up doing something
@@Thephantomewell Pain sucks all the strength out of you. Sometimes I get angry and force myself to do something that takes a small amount of strength and I swear I feel better afterwards even if it’s only a little while. This thing sucks. It’s about to storm here in 15 minutes, oh boy another fun day.
@@davidt8438 Ive actually noticed the same and wished I could have that burst of anger to just get up and get going and then it can go away lol but unfortunately for me anyways it never seems to work that way :) but same here with the storm its been every day here for the last week and a half or so at least once a day where I live in the summer but thank you so much for the response to you and everyone who all commented cause it was nice to see some of the symptoms that wipe me out completely also takes out other people the same so it made me feel less weak and useless to be honest I feel bad for those people too but I always felt like maybe I was just being a weakling
OMG, i get the eye twiching thing in my right eye, which will flare up for weeks on end. Brain fog too. Hot humind, or damp weather makes pain worse. I get muscle spasms, electric shocks, tingling and numbness. My back feels sunburned and itchy. My legs feel heavy and weak. Tired all the time, and cant do things like cleaning for very long the way i used to spend 6 hours cleaning before fibro. I get blury vision at times, and outer corners of my eyes water on and off for days, same with tinnitus and costochondritis (rib pain and in chest). Pain has also recently become deeper as well, and even more painful for 20 seconds in one spot at a time...i rub area and it goes away in that spot. I use Voltarin and heating pad a lot. Cant seem to regulate body temp on/off. Sometimes my feet and hands (mostly mt feet) will feel freezing inside and takes hours to warm them up, other times, if hot out, i get easily overheated. My sleep is horrible, case in point, its 3.57 am and ive been up since 1.20am, having falken asleep at 11.30pm. My brain fog comes and goes. I get dizzy and feel like im swaying inside with balance. Feel weak and exhausted every day, but some days are better and i have more energy and strength and will try to get extra stuff done. I do get high anxiety for days at a time, but it comes and goes as well. I do not wish this condition on anyone. I used to ge so active and very fit, now i cant move enough, can hardly even walk. Glad you still can get to gym 😊. I know, if on a good day, i stay moving and busy aroubd house, or out shopping or both, as long as i stay within 4 hours tops, on a good day, it does seem to improve the overall fibro symptoms...just cant overdo it, or it suffering for days. Nights seem to be THE WORST, for whatever reason. To all who suffer, sending you gentle hugs. ❤
Swaying, off balance is so unpredictable. I get it often too.
@traceytansley1659 , are we twins? 😂
Yep, all as above !
Same for me, and it sucks because to everyone I look fine and healthy, but the inside with all of the above, the pain, fibro fog, itching etc that people can't see...they think it's just made up. This is why it's called the invisible disease. Prayers for all with fibromyalgia and any disease 🙏
I have had Fibromyalgia for donkeys years and have found no really helpful treatment. When i travelledmon the bus i would sit in the disabled seats and often received some abuse, comments like "youre not disabled" "you like fine to me" so i bought a tshirt which informs people what i have, i also bought a badge on a lanyard that basically says the same, so when someone questions me on it, they can read the tshirt or the bloody badge. Not all illnesses are visible, thentshirt and badge have really helped. I feel more vulnerable, as a woman now, because i cant run away from trouble, keep your chin up. I get a really sharp stabbing pain in my eye which makes me scream out which is so embarrassing lol😊
I totally understand, i have had it for nearly three years, and the worst thing is the fatigue and feeling heavy x❤
Thank you for sharing your experience. Sometimes I feel so alone this helped, although I wish no one had to live this way.
I m with you. The unpredictable nature really does a number on your mind. God bless you and everyone else here who has this horrible condition.
Recently diagnosed. The worst is the brain fog...how do you explain to people what it is like to lose your thoughts right in the middle of a thought. Thank you for sharing.
I warn people that I can lose track. Usually, if I'm honest and tell someone that I lost part of the conversation, they're pretty swell about repeating it.
Try a magnesium complex and lion mane . It helps me
I was diagnosed with Fibramyalshia, SLE Lupus RA. kidney damage. Radiculapathy, periphial neurapathy etc the list goes on joint pain. Chronic fatique, swollen lyph nodes, tiez syndrome insomnia to name a few. For me meditating on Gods word, renewing my mind daily in Christ. exercise, diet & staying positive is what helps me
Stay encouraged! Prayers for everyone dealing with these conditions.
I cried all the way home on the bus today after my work 🥺 it's so debilitating and people don't get it I can't afford to not work stuck in a horrible situation
Me too-cleaning homes and supermarket cashier-now hands sudden extreme arthritis-so I get you. I go home and just try to exist -and I’m usually very sunny happy person. 64. Energy than total exhaustion. I know it’s age too but it’s getting to point where I just can’t do this-looking for better work. Meditating stretching with SHAOLIN master Shi Heng Liand setting firmer boundaries when others need me to visit when I can’t at night. I do t want to watch tv with my friend I just want not to feel like crying and have any control over my brain and body. Sorry for lonooonnnng rant. Hope all suffering find solutions..✌️
Yes it's really debilitating, took me ages to get diagnosed
Also I have constant back pain so I'm doing exercises right now to help, hope your ok just take each day as it comes and if it's too much just ask for help or step back a bit
does anyone that has fibro suffer from anger issues because of not being able to think straight or do things you once were able to do it just gets so frustrating and I feel worthless and like I have nothing to offer anyone anymore I quit dating I quit going out and have lost a lot of my family and friends do to being unreliable or pissed off all the time or hurting too much to participate so im passed over generally out of pity or respect for the pain. I really do feel alone I know there are a lot of people going through it too and it helps to know im not the only one that has those thoughts but what do you guys do for the real time actual loneliness? it's been 4 years since the girl i was engaged to and had been dating for 8 1/2 years left me right after a spinal fusion surgery and was at my lowest. I haven't dated or bothered looking for another partner although I would love one and miss having an awesome companion. I just feel like I can't really offer them a normal life and feel like I don't really have anything to give anymore. does anyone out there feel this way as well?
@@Thephantomewell I hear you and I feel your pain. I’ve always believed that if you can’t entertain yourself then you can’t entertain others. I’ve learned to accept the loneliness by reading books, learning new information on the internet and watching movies…lots of movies. I’m sincerely sorry to hear your girl left you. Always remember there’s somebody for everybody out there. You may not be able to offer them a “normal” life but you can certainly offer them a companion. I’ve been through the left out of family functions thing and I just try my best to eat right, get a good nights sleep, and rest up for days before I attempt to do a family function like Christmas or a special family members birthday. I don’t try to go to everything and they don’t invite me anymore anyway. I invite myself to whatever function I think I can make. Don’t stay in your head too much. Stress makes the pain worse. Nobody is worthless. I’ve been lucky because I married years ago and I’m even luckier because my wife doesn’t pressure me anymore. She has learned to accept my condition and I even push her to go out and have fun. She rarely does and I feel guilty about it but I don’t beat myself up over it either. I now live for the good day or two I get every year. Of course I over do it on those days and I pay for it afterwards sometimes for a week or two. But I still feel life is worth it. Become your own best friend again and live for whatever you can get. You only get one chance. I hope you can realize that anger won’t do anyone any good and it actually will make things worse for everyone. I do a lot of apologizing still to this day for my inability to join in but I say it once and move on. If that’s not enough for someone then they have the problem not me. Good luck
My fibromyalgia started at 37, when my father died. Life’s been painful and crap ever since. This guy hits the nail on the head. Wishing you healing my friend.
Its the most life changing experience you wake up your brain is telling your body please dont ache please move constant pain some days you can function flare days just steal your thoughts your time your life so many symptoms , it took 4 yrs for me to get a diagnosis there's not enough support, you feel that everyone around you is sick of seeing you ill but they support me and love me, but in your heart you feel like your letting people down , i have to say until i was on my medication i couldn't even turn over in bed took an age just to get up into a position to get out of bed , the medication has helped me but im on a 6, month waiting list for pain management in total ive waited almost 2 years for this help ... Keep 💪💪
I totally agree. I feel there is not enough support or awareness x❤
25 years ago getting a diagnosis was very difficult. I saw 9 doctors all of whom treated me for anxiety. It was a battle for many years with most medical personal who would tell me if I exercised I would be fine. I could talk forever on what this did to me a person. Finally a diagnosis from my family Dr who did the leg work. This was 25 years ago. I have suffered all those years alone and in pain. You are so right about the brain fog, OMG you feel so stupid. As I age I have chosen to laugh about it. The pain is increasing as I age and fear of being wheelchair bound consume my life. This is a sentence not unlike prison!
I'm coming up to a year of been diagnosed with fibromyalgia and still a learning curve knowing some of the symptoms I get is it fibromyalgia or something else and I'm so shocked how little support get from the doctors every day is a battle been in so much now effecting my ability to walk I've come so close to having a breakdown due to the pain and not been able to do things spend times feeling like a failure with the amazing support form my family I've learnt that it's fine if have to spend the day just resting and hopefully try again the next day you do so amazing at getting your point across what it like living with this painful illness your videos are helpful
It's all we've got. Today 😉
Finally you got to explain what fibromyalgia, ive been suffering with it for the last 17yrs, restless legs, back spasms, exhaustion not been able to sleep, legs feel like your carrying weights, flare-ups where you cant eat, depression, anxiety, severe headaches, muscle pains, brain fog, God bless all who suffers from this debilitating disease 🙏🌹❤️☘️
He definitely explains it well. My flare is ghastly this week. Hope you're on a low symptom day 😊
@@lisaklozenberg6408 I am actually on another flare-up & it's just floored me over doing things as usual, sending healing hugs to you, God bless 🙏🌹❤️
Thanks, the video is helpful. I hate waking up in horrible pain everyday. Sometimes I think I should go to the hospital but I push myself on. Thanks.💜
Hello James thank you so much for your content, I recently found your channel and watched all your videos . I was originally diagnosed 20 years ago with fibromyalgia. Initially I struggled with my symptoms for about 3 years before , I got back to work full time back then and have always worked , until recently I hurt my spine that was it my fibromyalgia is back full force and surprise I find myself being sent everywhere for tests again . Like you I’ve also had something show up on my liver , I don’t drink ! I had a raised ALT turns out it’s liver cysts . I too get the red rash on my face , the sun made me feel really unwell last summer , I love the sun normally. Like you wondered if it’s Lupus I’m currently waiting for a Rheumatologist appointment. But I’m so thankful for your explanation of symptoms as I would not of connected them to fibromyalgia , so one again thank you 🙏
I also have Fibromyalgia. The constant pain and discomfort alone gives Me a fatigue and exhaustion that is all consuming. Like You said, some days there are absolutely nothing you can do or be done. Duloxatine has helped me a great deal with the stiffness.
"Pain, pain, go away........NEVER come back another day......" - but it does 😢, and it will, just as it has for the last 40 years! I'm so tired of being in constant high-level pain as I am in atm due to a major flare-up!
Thank you, James, for bringing awareness about this generally-misunderstood illness, and its impact on the lives of those trying to live with it.
Yes, we are "fibro warriors" - we are in a constant battle with our bodies, but we will not let this disease win. We continue to struggle each day.......
I can for sure say you explain these beyond terrible and sad symptoms 😢
I get this delayed fatigue, after almost a year being bed ridden I was finally feeling better. I learned to pace myself. My Doctor increased my amitriptyline to a higher dosage (I might as well be taking smarties now) but I actually thought...its gone I think I'm better I had low pain and very little fatigue for day's, then all of a sudden , knock knock aul fibro is back 😢,and I'm bed ridden for day's. It was like a game of snakes and ladders. I'd feel good for a day or two and I'd push myself physically because it was a delight to have energy to be able to shower to stand for that long without pain in my feet, my ankles, and my shins, without feeling like my body was carrying around weights or bags of cement to actually have the strength to lift my arms and hold them up long enough wash my hair. So I pushed again until I learned myself about delayed fatigue, so I'm trying to pace myself and its hard because the minute you have a bit of energy or low pain you just want to RUN with it but the you get the reminder that your body is restricted, and its back to pacing. It's so difficult for others to understand when we look physically well and appear to be in no pain at all. They don't realise we could collapse on the sofa after a visit or a day out . I feel like I'm rambling on hear and I'm loosing my train of thought. So basically in a nutshell careful of the snakes and ladders 🪜sineario guys and remember to pace yourself 🤗
Well put!
FYI: SSRI medication has no proven effectiveness in treating FM. The body is not lacking Serotonin. Doctors give us
Amitriptyline thinking we suffer from depression which we do not.
I had widespread pain years before I had depression. I only became depressed because I was in constant pain.
I've been ill for 42 yrs, since 1982.
They are no closer to a cure or effective treatment then they were over a hundred yrs ago.
Fibromyalgia was just call something else back then. They gave it the name Fibromyalgia because it's most prominent symptom was widespread pain throughout the body.
It's not killing us so science has no time nor money to look for a treatment, cure or research it when only 1% of the world population has it.
I wish I could tell everyone something positive about the medical community helping us but then I'd be a liar.
Yeah.. i feel same.. so sad 😢
The worst symptom I get are these profuse night sweats with hypnogogic hallucinations (swirling kaleidoscope patterns and shapes when you are on the edge of sleep) They're bloody horrible, scary and nauseating and you just have to get up, sit on the bed and wait till they subside. Emotionally the worst thing is that nobody can see what you're dealing with. People just think you're overexaggerating all the pain and fatigue. Like I'm making excuses all the time.
Thanks so much for this James, i relate so much, it’s helped me feel less alone, the people in my life just don’t understand, sending love from Ireland 🇮🇪 ❤️
I started having fibromyalgia when I was 52. I had it for the last three years. It's very wearying and disheartening.
Doctor's will not diagnosis me with it. I just had a flare for 3 days. Felt like the flu just like you said. Basically no fever but slept for all day and stiff with tender skin and brain fog. And worst part is that I can not get disability for it so I have to work as a single parent. It sucks. Thanks for the video, we are not alone!
Hi James, thank you for sharing. I’ve had fibro most of my life. Got diagnosed about 20 years ago. And yes like you I get people looking at me and I’ve argued with old people when I park in a blue babe space because of my other problems. They are like there’s nothing wrong with you. And the stress flares me up. So I try not to argue with them. But yes on a slightly good day and try and do my housework etc then it’s back to the sofa 🥲I to do a little at the gym with my son to help me keep moving. He’s amazing. It’s taken me ages to write this because of my Brian fog. But I don’t let it win. I keep at it. Take care
Unless they are your doctor, they need to shut up. I almost went off on an elderly lady bec I was parked in handicapped parking but we appear fine.
Appear being the operative word. Just like ppl in a casket look fine.. they are still DEAD.
I agree. I have had it for nearly three years, worst thing is fatigue and feeling heavy x 😢😢❤
Thank you for this video I identified with you so much the unpredictability of it is always there I have to cancel so many arrangement and hope my friends
Understand and believe me sometimes I feel so lonely x
I have been living with chronic pain, neuropathy and exhaustion since 2006… finally diagnosed with fibromyalgia this year(!). I have a bunch of red herrings, herniated discs/stenosis/food sensitivity/hormonal changes etc but I think it’s really wild that it’s taken so long for a Dr to actually diagnose fibromyalgia.
I know a few things that cause flares now… spicy food (which I love but can no longer eat) will cause gut pain for weeks. Massage (which has always been a favorite indulgence) now causes Massive neuropathy flares which put me in bed for days and linger for weeks. And the heat is really rough for me now…challenging because I live in southern Arizona, where it’s crazy hot 6 months of the year (we are moving as soon as our son finishes school)
Thank you for this video- I’m still questioning if this is truly fibromyalgia, but hearing everybody’s stories at least makes me feel like I’m not alone.
Yours is the most on point description I have heard yet. Thank you so much for this😊❤
I am so thankful for your video. It is difficult for family and others to understand because let’s face it, what we experience is simply not logical. Makes no sense at all. It is still hard for me to understand. Frustrating and annoying are 2 things that comes to mind. And certainly inconvenient! I hate having to cancel plans at the last hour because the pain, or headache, or foggy’ness just pops up suddenly. Fatigue. Ugh. But, more and more people are understanding this syndrome because of videos like yours. 😊
Yes, my mothers has had it her entire adult life, and my small symptoms started in childhood and progressed. I say FMS has complicated my life for over 40 yrs. My mom was a nurse, and I think that helped us learn how to adapt best we could with it.
Can’t come down to hard on medical staff as, the nature of this is constantly changing and effecting us differently. If we can’t predict flares, how can they?
It does get frustrating through when seeing new NP, we don’t have any drs willing to work in our rural area. They give you the basic suggestions, and it’s hard not to laugh at them, when they are young enough to be your kid, and you’ve been trying their suggestions to the best of your ability for longer than they’ve been alive.
During this last 2 yr flare, when pains get off the chart, it would be nice if I had someone right then who could remind me of the tools in my Fibromyalgia Tool box to try. Cause after a few hrs of 12 on a 10 scale, I’ve realized later that gee why didn’t I try the oils, or the cold pack, or rice heat, or epsom salt soak, or barefoot in grass…etc.
My biggest issue is the hypersensitive/hypo sensitive to anything…including medications, which means pain meds don’t usually work or I have a reaction that’s not worth it.
Thank you SO much for starting this channel. So many people dont understand it 🫤
I have been living like this for about 4 years. Doctors send me for Physio. Now they are sending me to a Rheumatism specialist. No one wants to believe me. I am 80 years old with Diabetes type 2. IBS which I have had for 25years. You describe exactly how I feel. Thank you.......
Thank you for the way you explained this. I've been trying to put Fybro into words for my family but it's so difficult.Support from loved ones makes such a difference. Whishing you well❤
Thank you so much. It is infuriating living this way, especially when no one understands how you feel. It is so refreshing to know that someone goes through the same thing. You understand. That is amazing.
You describe it exactly how I feel
James. I've just found your channel and have subscribed. It's really unusual for guys to have Fibro ( my friend Martyn has it too, and we were both professional musicians, but fibro robbed us of this ability 😢). I'm having a flare today - 'fluey' and knackered.. You know what it's like.
Hope you're having a low pain Bank Holiday 😊Best wishes from the Welsh Borders, UK.
Thanks for posting this, James. I've had fibromyalgia for 24 years. All of us who have it know what it's like & how horrible it is. I think the way you've described it is very helpful - thank you.
I hate feeling stiff, heavy, walking slowing h😢it’s embarrassing like I’m old
OMG, resonate with this so much, especially the maintaining exercise bit 😢
Thanks for sharing your daily experiences. I just got diagnosed (finally) last week. I get every thing you mentioned but also I get severe knee and leg pain when I walk which without medication would leave me immobile. I wish I could go to the gym, bike, rowing etc is behind me in the past but I may try swimming.
It's good to know I am not alone mate. Hang in there.
I have had fibromyalgia since 2013. You described the symptoms so well! I have tried to tell my kids about fibromyalgia and why I don’t always make it to family gatherings or other events, but I am told that I am making excuses and nothing is wrong with me.
It does help that you're not alone. I was diagnosed with it 23 years ago after a year of drs telling me nothing was wrong with me.
Thankyou for sharing.
🙏 ❤
I was diagnosed with Fibro and CFS. I did not have these. I had chills, aches and pains in muscles and joints, low body temperature, so weak. Well, if your thyroid hormones are low, your body cannot function properly! and it can also be your thyroid is making enough hormones but you can become resistant to it, often due to dieting, too much exercise and high stress/cortisol. what I had was low hormones and low thyroid and high cortisol. I was vigilant in getting help and a naturopath decided to try out HRT and added thyroid hormone. within 6 weeks I got great improvement. 14 years later at age 63 I am cured. I have no more pains or stiffness or fatigue or brain fog. I am slower that I was of course I am aging, but I went back to work, I exercise daily/gym/spin, lost 106 lbs, all thanks to hormone replacement. dont just get your thyroid tsh checked. it took a full thyroid panel to determine I had low free t4 and low free t3, and of course at age 51 no more sex hormones...
We fight on. And on. And we MUST. It’s a shit as so few people actually understand or can empathise. How could they?
Worst part of it all for me is frustration. I’ve always prided myself on my ability to undertake projects and restorations. Its been my life line and kept me sane in a increasingly stressful and complicated world. The periods where I am unable to function, think or even walk are emotional killers. Even holding a book can be impossible. This is the blackest interpretation of my condition.
More funding and research is needed as I predict that our numbers will only increase.
Stay strong folks!
I love the way you explained the pain tolerance and how it feels, the pain scale I could never figure out,😮
I just left the doctor today after having a torn labrum repair a degenerative disc in my neck pelvic tilt in my lower spine joint popping in every joint in my body neck cracking headaches and days I can’t breath bowel problems and on top of that I have Grand Mal seizures most of my life to finally find out this is what I might after all my test for rheumatoid arthritis and blood test come back fine I really hope there’s a answer for this I just want my body back
I had covid last month and now fibromyalgia is severe. I cannot clean my house even.
This happened to me in March. I was off work for weeks. 😞
I hope you feel better soon ❤️
Love watching your channel. Thankyou so much 💜
That's correct you hit it spot on man I'm telling you thank you Atlanta Georgia my wife found it her own private message back in the nineties the early nineties when there was no one she found her own fibromyalgia when nobody else was there to help her Plus osteoarthritis etc. Just tried just try to take care of yourself and eat more fresh vegetables in prey meditating and rest. G-d bless you. Thank you 😢
MUCH LOVE AND MANY THANX FROM AUSTRALIA 8) XO
I have a marvellous GP who takes fibro very seriously and has warned me to go and see him if there are any changes because ' not everything is fibro '. Isnt he a star? Ametryptellin ( I know the spling is wrong - apologies ) keeps my pain manageable and gets me to sleep ! Thank you James for an excellent break down of fibro, the invisible set of symptoms. ❤
It really is a horrible thing to have, I have had it for 20 years, think was after breaking my back in a fall and a divorce. People do not understand it, if tou tell people they think your moaming minnie. I had bad flare up last 6 weeks, tingling all over, went to see doctor,.and said do you think it's fibromyalgia getting worse, she just looked at me like i was an idiot. She was one of those doctors that didnt believe in fibromyalgia. Look after yourselves much love, Catherine
One of the hardest things for me is being unreliable. It's not my fault, I know, but I feel badly when I let people down. So, I tend to avoid making commitments that I might not be able to keep.
Hi 👋 James, im new to your wonderful channel here on Fibro..I just came across your channel and find it sofar to the point info on everything about it as u can tell us all.The full..Heads Up on this awful painful condition..gentle and friendly nice huggs to u hon.❤❤❤love your awesome accent as well. You British or Australian. Im guessing..British..sweet anyways..ill keep watching daily keep posting ok.much love from me..Nancy from Jacksonville Florida..USA❤❤❤
😊 fibro sucks 😞 mine started 8 years ago after life changing car accident. Everyday is different. Ty for sharing 😊
Thank you James
I'm a COVID long hauler but as time goes on (3 years and counting.) I seem to be left with multiple autoimmune responses. My hands arms and spine are the most unrelenting but I also experience restless legs and frequent body temp. Changes. I'm still in discovery as my ANA blood work didn't indicate much. I'm having an awful time with getting a proper spinal exam and have endured tests that were almost worse than the illness. My sneezes can lead to vomiting and my appetite is almost no existent. I gained weight in the last two years due to lethargy but have lost most of it ,just by eating autoimmune diet. That's been helpful for the most severe symptoms. I have way more migraines nowadays. I know COVID caused this but I'm still trying to cope with not knowing the long term prognosis. I feel like I literally live one day at a time. Regardless of what the world demands. My family is estranged. Guess they couldn't accept what I already have. This may be my forever. Relationships are few but prescious. I appreciate everyone and everything such as I never have. Not being able to work after two terrible years of the pandemic costing me my business, marriage, family and health, I don't see the world the same. Still fighting for social security because this illness doesn't present normal or conclusive test results. Not sure how I've hung on but I have. Moved some place warm, and started up with the endless tests and a lack of understanding from most of my care givers. You have demonstrated the very issues I deal with. Like losing my train of thought or not comprehending parts of what someone is saying to me.
If you have had the Covid injections it could be from that and not Covid. You might need to detox from the spike protein.
I am sorry for all your losses. I started the process to fight for SSI but came to realize it would be such a n uphill battle, as I suffered with it for years but did not go in to see doctors for every thing. It cost too much and our insurance deductible was too high. So, I stopped the process. I don’t have the energy to do it. Thank God for a loving husband ! He knows, but I am sure he wishes I was working and earning money for us, too.
Im in my late 60s my flare ups last up to 3mths
I had FM on and off for 15 years, was on a wonderful low pain few months...then just had a mild virus that was a bit grotty for a few days, and then bam! Epic Fibro pain everywhere 24/7 for 3 weeks post virus now....shoulders, neck, arms , legs, the whole lot. Lovely. Only relief and only way to actually rest is Ibuprofen and CBD oil.
Only thing that keeps you going some days is knowing you're not alone and you're definitely not mad, or making it up
Best explanation of this horrible illness thank you its hell
I describe it like a wretched flu and fatigue you cant push through. The pain is constant. Then it keeps you from sleeping. Its debilitating and a vicious cycle. Just taking a shower can be the goal for the day. It takes me a month to do what I did in a day. At least. Ability to function is severely impaired.
I just found your channel. I have my very 1st appointment next month. I waited 2 years. How is it diagnosed?? I will look through your vids. I only have youtube.
God bless hope you feel better soon X 🙏🙏🙏
Could you do a video either in the gym or on the gym. I am 21 and before my fibro started I was in the gym 3 hours over 2 sessions everyday and I was in really good shape. Now in the last 2-3 years I have lost so much muscle and weight since and now if I go to the gym I just come back and wait for the flare up to begin.
Fibromyalgia is now affecting my bone structure. I broke both hips. I am still struggling with my leftside hip. I am getting a hipreplacement in August.
Layer upon layer of pain. Muscle stiffness, tenderness and cramps. They say duloxetine and amitriptyline cause nerve damage. Active forms of vitamin Bs can help with nerve repair after many months of use. I am currently trying the Vit Bs but haven't seen benefits as of two months so far. Will continue for six months to see if any benefit. Mega dosing on vitamin D didn't work for me.
Does anyone just cry bc they can’t stand it sometimes
I do x 😢😢😢
It’s the Chronic Pain and Brain Fog that affects me. Meds don’t help. Appointment coming up in three weeks to see Neurologist.
God bless!
I have suspected fibromyalgia and my question is how do we make it through a normal work day? I get so tired my eyes cross and I cannot think sleep or focus and not to mention the pain. What do we do?
Hi I have had this for nearly 3 years now and my life is totally changed, just been diagnosed with it but doctor says I have to just live with it, am at breaking point now, every day is pain not sure what to take to ease it, just need help 😢
I call myself a Fibromite 😊
I was diagnosed with fibro at age 15 and I'll be 39 in March
17 CFS 36 fybromyalgia but I now no I have heds do you most of us do at least have hypomobility
The meek inherit the earth
It’s that brain fog for me! Losing a sentence and where I was going with it!
I have it , 33 years ago. I’m 67. People tall me change my diet. That does not work!
Thank you. I hate this disease.
The fatigue
thank you for sharing i went doctors thinking my arthtitis had spread i was sent to hospital the consultant told me i had fibro and i think i mite have a leaflet on it if not go home and look it up because of how he treated me i went private for a second opinion just because of how i was treated i didnt trust the doctor
The same with me 🙏
All of it ,,it’s so hard .😞
Im a men to with fibromyalgia cvs o know how your feeling greetz from holland
The no plans
Worst thing.....pain and not being able to think to function....
Yes the brain fog is real!!!
It's like a knife stabbing in your muscles or a gun shot wound legs severe not stop around the clock every second day months of tithis please get it right brain fog least problem screaming pain the worst
Why are there so many white women with fibromyalgia?
Bro you don’t have a disease, you have an allergic reaction to a chemical in your food supply. All nerve pain comes from one thing, glyphosate
But some of us chemical suseptabilty to if w have autism ADHD hypomobility
@@Truerealism747
My ADHD and OCD was formed in the womb, so I can’t change that but learned how to use to my advantage thank goodness the OCD keeps me on track. I recently quit all off the shelf hygiene products and in the second week my chronic disease of insomnia of 8 yrs ,just went away …….
I think and move to fast because my Adrenal glands over produce adrenaline hence the ADHD and not ADD. Before the 50’s there was almost none of these so called diseases and everyone on Earth ate Organic foods without Chemicals in it !!!
glyphosate gave me celiac disease and peripheral neuropathy, and with atrazine it gave me fibromyalgia all chronic ! Now I’m pain free and living life again not in the confines of bed and wheel chairs. Hope this finds you well and helps even a little !
Share and pay forward , Tim .
Maybe when it will happen to you, you will regret your stupid coment.
MUCH LOVE AND MANY THANX FROM AUSTRALIA 8) XO
MUCH LOVE AND MANY THANX FROM AUSTRALIA 8) XO