My Fibromyalgia Story
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- Опубликовано: 27 авг 2024
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I'm 67 and was diagnosed when I was 20. The consensus was that I had it as a toddler. I do remember the joint pain. I've tried nearly everything that I've ever heard of in my near 70 years, but not much helps. I wish I didn't have to take any meds, but I will say Lyrica has been a godsend for me. Now, I don't want to die but I tell my doctors that I'm grateful for every day that I'm alive as it brings me that much closer to my death and relief from this mind-numbing, bone-crushing pain and fatigue.
I'm 18 and I've always had pain problems and weird sensations in my body for as long as I can remember. And after so many years I haven't a single right diagnosis. Every single specialist I see gives me a different diagnosis and nothing ever works. It got to the point where I thought it was maybe all in my head or maybe I'm just not in shape or lazy but what I come to realise is that the only reason I'm not in shape is because I'm always in pain somewhere, it's not because I'm lazy. In high school I wanted to do sports so bad, I wanted to play badminton, rugby, hockey... Yet sadly I wasn't able to play for more than a few minutes. Even as a child, I couldn't run too much because or else I had abdominal pain. It makes me so sad because I feel like I've lost my childhood, just looking at other kids having fun while not being able to join them. Now I dont have any energy, I'm overweight and blamed it on myself my entire life. I'm not diagnosed with fibromialgia, but I litteraly have almost all the simptons, I should talk to my doctor about it...
@therussianblin2175 I feel so badly for you. I was the same way in school. I would highly recommend that you see a doctor and be diagnosed by either a rheumatologist or possibly a neurologist. When I was 18, there were VERY few doctors who even heard of fibromyalgia and fewer who believed it was a thing. And there were no medications to treat it at all. However, perhaps you have Ehler-Danlos, or even Guillain-Barre (the test would have to be exhaustive). But now, if you get a proper diagnosis, I believe that you can get some relief. I wish you well, my dear.
@@reflexxuns767 thanks, I really appreciate it. What opened my eye to fibromialgia is the fact that my mom has it but she only developped it in her late 40s, so I didn't think it was possible for someone to have it as young as 5 to 8 years old (when I started getting symptoms). Your comment made me feel less alone but I'm sorry for what you've been through
@therussianblin2175 It can develop at any point, but there is a genetic component, so the fact that your mom has it could very well mean that you could have it too.
Taking Lyrica or pregablin didn't affect your kidney? I am also suffering from fibromyalgia and I take pregablin and ultracet but I worry about my kidney
We have 4 in the family that have fibromyalgia. It was because of that I finally found out that I have it as well. It has been 28 since I was told I have fibromyalgia but some doctor still don't know what it is. Remember you are not alone on your good or bad days and you are not going mad or nuts you know your body and what feels right and wrong.
I got diagnosed at 50 i felt terrible for years and could not work. I went to pain managemet and for 7 years and i'm feeling better than ever noe with medication, diet change and exercise. I hope you get the help you need. God bless you😊
@@lornafredrick5683 Thank you and I am sending you alot of good energy and healthy vibes 💖
I got misdiagnosed with fibromyalgia, and it turned out I had hypermobile type Ehlers Danlos syndrome.
I really feel for you. I have widespread pain and chronic fatigue on most days and rarely do I have okeyish days.
If I may, concentrate on your food plan (it sorted my IBS and reduced flare ups) and find a physical activity that "you can do" (it's tricky finding that "right" activity that won't trigger a flare)… but on a super regular basis and Love yourself, always ❤💙
This story matches exactly what’s happening to me. I’m almost positive I have fibro. Been a long road of ruling other stuff out and my primary care thinks it’s all mental. Thanks for sharing. Seeing a specialist soon.
Fibromyalgia is so debilitating, and one of those illnesses where people are like if you cant see it youre faking it sort of thing..mine started after having breast cancer that was 10 years ago. Sending soft gentle hugs to all ❤
My aunt developed guillan barre after food poisoning. It is an autoimmune disease that attacks the nerves. She was almost completely paralyzed. She did recover and got to a point where it was managed but years later got sick with something else and it flared up bad. She was not able to recover from it that time. She is now in her 40s and has to use a wheelchair sometimes. She is a nurse practioner, in shape, healthy and all it took was food poisoning to debilitate her. This is why food poisoning scares me so much.
You look so young. I was 38 when my drastic health issues started. Im a mess.
Praying for you 🙏❤
38 was my lucky number too for GERD.
My Sjögren’s and Fibromyalgia started after struggling a year with MRSA. Been terrible ever since! Severe pain, fatigue, brain fog. Was bedridden for a little over 2 years. Sorry you’re struggling so much, too, especially with having young children!! I give you so much credit for doing all that you do!!
It is September 2023. Been diagnosed with Fibromyalgia by my primary care physician and a Rheumatologist. I dread the winter as last winter I thought I was gonna die as I was in so much pain all over my body i was in tears. Migrane headaches, gut issues, and extreme fatigue. Ever joint and bone in my body hurt. Even the hair on my arms hurt. This coming winter scares me as last winter I barely made it.
Well it’s winter how are you holding up?
I’m in Ohio and been aching for a week straight, hoping it goes away soon.
It’s fckin painful
@samlbear Sorry to know you are experiencing symptoms to. I am doing somewhat better since I am on medication, but it is the migrane headaches that is getting the best of me. It is every day and all day. How are you?
@@Prometheuspredator geez it’s always something isn’t it.
I’ve been taking Curamin and be mobile from health food store for a week but not sure it’s doing much yet.
I’m heading to Florida next week for a few days hopefully some sunshine will boost me up, I may just need to leave Ohio .
Hope the migraines go away.
I was just weeks away from turning 25. My job required me to travel to several campuses for brief periods of time to review their records. Understandingly, the staff at each location wasn't always so happy to have us there & just viewed us as a nuisance. We were often placed in some pretty unpleasant spots because there wasn't really any extra room for us (usually at least 2 people went to each location), but some were honest enough to admit it was also a way to ensure we got out as quickly as possible. MANY of these locations reeked of mold & mildew. I had never had allergy or sinus problems until then & most all my co-workers had them bad as well - often feeling so sick they would have to call in sick. On one particular day before Thanksgiving we had just arrived at a location & were placed in a unpleasant site, though I had been in much worse. I began to feel sick shortly after with what I thought was the flu. After all it was that season & being on a site packed with students- something was always going around. I got so bad I had to leave early, unfortunately my coworker did too since it was an out of town assignment & we had to commute to it together. I felt even worse for interfering with her schedule, but I couldn't even hold my head up by that point & their nurse checked me out & agreed going home was the best choice. I fever slept the entire ride home. I didn't really think anything of it, just needed to rest & would be back to my normal healthy, energetic, clear headed self again. 🔥 21 years later I'm still waiting.🔥 That set the dominoes off - frequent migraine (before getting sick had only occasionally), chronic sinus infections that led to surgery, intestinal issues, but the one I grew to hate most - constant brain fog. I went from performing my job well - always having excellent employee reviews- to ones reprimanding the change that had appeared in me that I couldn't even perform basic requirements well. I was fumes away from being demoted for it when I left to accept what I hoped would be easier on my brain though a HUGE paycut. Staying wasn't an option. I has humiliated & just as dumbfounded by what was happening to me as they were. It was seen as carelessness, I knew that wasn't true but didn't understand it myself- I had nothing to defend myself with so left before I could be demoted or fired. I knew either of those would break me because I had fell so far & my respected professional reputation had been obliterated. Whatever "IT" was continued it's hold, exponentially worsening in the new job. Which also came with a moldy environment, but this time not an occasional one - I was to be there daily. It also came with some pretty intense inter- office infighting & politics I was only made aware of by every employee I was introduced to on my first day. Being greeted with "Are you sure you want to work HERE?" really helped my stress levels. Which were pretty maxed out by this point anyway from the continued unnamed illness, a divorce I was devastated by & having to move back to what I had said for years "I'll die before I ever go back there." The new job & the divorce didn't leave much choice, so I ate my words - and had a sick instinct feeling to my stomach the entire way- as I drove mine & my toddler's belongings there. I later learned stress will make flares worse. Apparently that's what I went into because I was really struggling - at everything by now. I was promptly fired from the new job for it. That literally sent me over the edge. The embarrassment, humiliation & self loathing welcomed clinical depression to this Hell party I had gotten trapped in. I also later learned depression & anxiety are a fibro mainstay- and that's exactly what they've done. I've been ping ponged to so many doctors since my diagnosis 10 yrs ago & the diagnoses that seem to keep coming. Nothing has improved it - it's only escalated to where I consider myself bed pillow not a human now. I know I'm not supposed to fight it & acceptance is a must. But 2 decades of what I keep praying is just a looong bad dream - or my 2nd theory, I died during heart surgery 13 yrs ago (came very close 2x) & am actually in Hell. My brain refuses acceptance. It still remembers the healthy young woman from 2 decades ago & refuses to accept the 40 something yr old bed pillow that it is trapped in now. The daily skull crushing migraines are all I need to be convinced it's beyond sick of this 💩 too & is trying to break out.
✨️Sorry to write a book, but I have to keep all this inside. I'm over being called a hypercondriac, druggie (I've never done drugs & don't drink, but admittedly I look pretty bad most days so I can understand the accusation), or just worry too much about myself. I don't bother discussing it with anyone but my doctors & there's only so much time alloted in appointments- I go in with my notes & stick to the subject. Your channel really helps because everything is relatable. Well except you are a very beautiful lady that still looks so well put together. I gave up on it a decade ago & now my family says I look like a hobo. 🤷♀️. It doesn't offend me, it's true, but after 2 decades of fighting I'm just beat down, I don't even look in the mirror anymore so hobo is actually pretty gracious.
💜Thank you for this channel, I have no idea how you do it 💜
I hope today is a good day for you.
❤️❤️
story of my lifeee. my new doctor thinks I may have fibriomyalgia too (we're still ruling stuff out tho) and I've been in chronic pain for 7 years. 11-12 was when the headaches, migraine, faintiness, etc. started and my stomach and gut issues started after one morning I ate a double chocolate chip muffin and orange juice for breakfast and I was in the worst pain I'd ever been in my life. I was 14. constant pain, gas, nausea, cramps, etc. occured. the bone and muscle aches, pain, tenderness, and everything else started at age 16/17 and I get bad episodes where I collapse on the floor, get overheated, weak, fatigued and can't walk well on my own for some time. I'm having one of those episodes rn and have been recovering from it for over a week and from severe foot pain for 3 weeks. now at 18, I'm starting to realize these issues may be more interconnected than I thought
Did you check your level of vitamin D too
@@alathditcomedy491 yes, I got a full vitamin test. everything came back normal. I had low vitamin d a few years ago tho
then they tell you yoga will fix it
i hope you cope ok. it can be super frustrating.
It won't
Yoga doesn't work for everyone. And it won't fix it either. For me, it hurts a lot getting into it and if i go too long without it, it'll hurt a lot when i finally do it. But it's worth it. For me.
Sudden onset seems to be most common. Maybe an infection; bacterial or virus, triggers the mitochondria to go into protection mode permanently.
I'm noticing this too. in myself and others
@@kid-ava They are saying cfs and long covid are very similar. Similar experiments on the population.
@@user-bg2oi4bz3p to your knowledge, can a food sensitivity/misstep also cause an onset of symptoms? my symptoms started after I ate a chocolate muffin and orange juice on a empty stomach once. I'm not allergic to either of those but it seems like the time in which I ate it with the high sugar content hurt me
I recently got diagnosed with fibromyalgia happy to know why I am always tired and my body hurts and why my migraines are so bad.
Mine Fibro from a UTI which led up to my kidneys. Thank you for sharing your story ❤️
Have you ever looked at histamine intolerance which can cause leaky gut? I am on a journey with my daughter to discover the underlying cause of all the POTS symptoms she has after having a virus in November, 2023, while in college. We have gone from thinking it was anxiety, to discovering she has all but one of the symptoms of POTS (not the fainting), to finding she was low in vitamin D, had low blood volume, and had hypothyroidism numbers that were crazy. A doctor on RUclips told us that with POTS there is usually an underlying autoimmune disease so we discovered she has Hashimoto’s disease. Those things are now better but symptoms persist. A letter by a mother from England about her teenage son’s problems and how a low histamine diet has cured him has led us to the histamine intolerance, which can dilate your blood vessels, affect digestion, affect sleep, and more. She was just tested two days ago, so no results yet, but I am hopeful. I have purchased a book, the 4-Phase Histamine Reset Plan, by Dr. Becky Campbell, to see if this is the cure it was for that boy.
I think mine was triggered after my first bout of c.diff from an antibiotic. Ever since I had that for 6 weeks without knowing (major weight loss occurred), nothing has ever been the same since.
My now-ex divorced me because he didn’t want a “lazy” wife.
Life can be so cruel.
You will find love again with someone who will love you and accept who you are xxx
Oh wow I feel your pain with the C.diff. I was doing OK health wise (except for migraines which were under control) until around 2014 or 2015 I had 5 bouts of C.diff. Developed IBS, lactose intolerance, & severe chronic abdominal pain. They thought the C.diff was caused by ciprofloxacin I took for a tooth extraction, as I was in my mid 20s. I don't remember the exact sequence of events but I also started getting bad neck and back pain as well, assumed due to a few minor car accidents over the years. I had a pretty great GP who treated me for my pain and specialists for other issues. Seemed like I went into remission because I was fine & nearly pain free for about 2-3 yrs.
Then it came back, gradually and all at once. Wake up every day feeling like I ran a marathon with no training, then got hit by a train. I am constantly trying to recall my memories to try & figure out how I went into remission and make it happen again. Hoping more research is done & they find a way to get us out of this hell.
Also I empathize with your relationship issue. I lost a lot of weight after C.diff as well, I was single back then and had ended a toxic relationship. Moved to a new state and got into a new relationship. What do you know, almost 2 yrs in and I realize he's toxic too. I do believe the stress has a major impact on health, & maybe getting out of that relationship helped alleviate my symptoms. My current partner is always complaining about not doing anything fun, & always suggesting very physical and difficult activities/events/travel that would be too much for me. Despite telling him multiple times what my limits are. Part of me wonders if it's better to be single...part of me wonders what it would be like to be with a selfless, empathetic man who truly cares about you in good times and bad.
I know it's not being lazy, because I have it too. I have a family member that thinks if I do something every single day, you will feel better. If I go out or to work, say 3 days in a row, I know I am in for it the next day or two. Even if I do something all day and think I will sleep well, I tend to be up until 5 or so in the morning and maybe get 4 hours of sleep. I wish they would understand more. Take care.
Your Ex was a pig.. better off without him by the sound of it.
I'm so sorry to hear you're in this unfortunate diagnosis with so many of us. I know how hard it is and that sometimes you might feel alone, but I assure you that I see you, I hear you and I pray you have more good days then hard ones. Sending you virtual hugs from a fellow Fibro warrior 🤗 ❤
I had to have emergency surgery for a burst abscess related to what was Crohns...they gave me my 2nd resection of my ileum (leaving about 2" of ileum intestine). I couldn't come back from that surgery @ 28yo. Roughly a year later I am diagnosed with textbook Fibromyalgia (which I had been praying it was something that I could retrain myself out of). That was my 2nd rheumatologist visit that year. The first one very staunchly doesn't believe in these new diseases. After 20 years now, I have ADHD happening and it screws up my slightly already had OCD issues. It makes it impossible to start things. I spend days just letting the mattress absorb the throbbing pain from every inch of my body. But I don't want to try to work...because I can't be understood when I am under any kind of stress. You don't understand...I have a degree in Library Technology and I couldn't remember how to say "book". 5 minutes describing the object that is the top book of the pile. I have serious issues with stress and what it's done to my brain and how I respond. I have cognitive function issues, it's worse than the Fibro-fog that I used to have. I have to finish my thoughts whether anyone hears the sentence or not. I am not this person. And the fatigue and migraines are just how it works. I am currently drinking sodas (not normal for me) to stay awake because coffee is too hard on my gut.
Has a neurologist offered you Amantadine to help address the fibro-fog, fatigue, and drowsiness?
this sounds a lot like what i've been experiencing the past 4-6 months 😞
Hav you found relief yet . I feel like my muscles are on fire. When i sneez it herts so bad i cry . Im a 56 year old man i woke farm every day . I hert alk the time
I’m sorry huni. I’m praying for all of us with this horrific disease no one can help us with - acupuncture seems to work best for me so far!! God Bless and I’d love to find a cure 🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼
That sucks. For me I think mono was the start of POTS. Most people get it and have no problems. Not me.
Me too. Mono started my problems.
Fibromyalgia is Latin for muscle pain. Therefore it is real in a sense but its not a diagnosis, it is a description translated into Latin. The root cause of muscle pain is not Fibromyalgia since that is just another word for muscle pain. Doctors need to figure out the cause of your pain, not just call it Fibromyalgia.
I relate to the food poisoning thing too hard, I got POTS and functional abdominal pain/dysmotility issues from that :/
My Dr thinks this is something I could have. I probably got it from when I had glandular fever in 2014. I'm 28 now and the pain so bad. Having some more tests done to rule anything else out.
My chronic pain and health problems came from food poisoning too!
When I was first diagnosed I was feeling pain in my knees I thought because I did some hard exercises and I also had previous injuries .. I kept getting tested and stuff and finally the doctor said it was fibromyalgia I have .. my fibromyalgia was unfortunately caused by emotional trauma .. when I was 14 I was sexually assaulted and which caused a lot of mental trauma and emotional and physical trauma .. I started feeling pain about 1 year into my recovery time for SA then that was back in 2012 .. my SA lasted from 2009 to 2011 .. during my recovery time I started to feel pain in my leg .. I had it for years so in 2016 I was diagnosed with fibromyalgia..
I have fibromyalgia for almost 3 years now and if one of my kids brings stomach bug from school they recover within a day but I'm DYING. I can't even explain it. Not only will I have stomach bug symptoms but my fibro will flare so much I can't stand up because I'm so weak and my entire body hurts.
Yes!. I always get sooooo tired and sore the day before I come down with something.
Fibromyalgia is terrible. Diagnosis at age 13...37 now and having a hard time with daily function.
Your nervous system is imbalanced from your food poisoning. Get through it. Patience is necessary. Chiropractors & Acupuncture treatments will help. Nothing is
Instant to fix your nervous system symptoms
Vagus nervous system is imbalanced. Exercise also helps.
Keep HYDRATED always.
This exact thing happened to me as well and then another time a few years later I nearly died from Salmonella poisoning (I lost 17lbs in a week and started bleeding in my digestive tract).
I have wondered if those caused or worsened my physical pain issues but I don’t know what kind of Dr. would put that price together. If you have one that understands this I’d love to know what type they are.
Think how you got it. Don't live with it and don't listen to a medical doctor. I had fibromyalgia for 25 years. I'm over it now. Good luck.
How did I get rid of it please help me
How???
I wonder how did you recover. Please help us.
Carnivore diet
Activated Charcoal detoxifying Remedy . Get some. Take some for
a week. Feel better!!!!
My Fibromyalgia has been triggered by my 3rd covid infection since September 2022.
Dr emuakhe is an epitome of good treatment,the doc has every criteria to human health..
OMG! Are you saying that you were completely healthy until you got food poisoning on your honeymoon?
I didn't have pain. But sure, occasionally gut issues since I'd had all the gut removal and stuff 5 years before but no pain. I was planning on getting my dream job in my home state...while my husband spent the next 6 months getting his degree. I was back home for 2 days then surgery. I have a few memories of pain-free moments since but feels like all my life
I have it too! It sucks
FMS is over diagnosed...sounds like you need to keep looking for an accurate Dx, you may have something more treatable
Plz try Carnivore diet. Look up Dr. ZSophia clemens
Did he dump you like mine did?
❤❤
I'm the same, foodpoisoning that caused my body to attack itself and then got Fibro. You must feel so miserable .
Same!
Did they ever tell you that you have myalgic encephalomyelitis? I was just diagnosed with that 2 weeks ago and this sounds a lot like my symptoms.
They are similar.
Is it just me or does she only talk or of the right side of her mouth?
Soubds like the medicine they put her on.
Bad doctors. Me 2
You helped me Eradicate my Disease completely with your herbal remedies and gave me comfort when all hope was lost, Thanks #DrIGHO, you are a Great doctor and I will always recommend your good work to the world.