Is There a Connection Between Fibromyalgia and MS?
I’ve often wondered if there may be a connection between fibromyalgia, multiple sclerosis (MS), and other neurological conditions.
Back in the early 1990s, my doctor suspected fibromyalgia as the culprit for my fatigue, aches, and pains. At the time, doctors diagnosed fibromyalgia by the use of tender points. Additional criteria have been added to diagnostic guidelines since then. But in those days, the doctor would assess a patient by applying firm hand pressure to 18 specific areas of the body. If 11 of those 18 tender points reacted with additional pain, then the diagnosis was fibromyalgia.
I did have added pain with the applied pressure, and my doctor considered diagnosing me with fibromyalgia. But she decided against it. She reasoned that I might not be eligible for disability support in the future if I had fibromyalgia registered in my chart. I’m glad that she didn’t give me that diagnosis because I had no problems receiving disability payments when I was finally diagnosed with primary progressive multiple sclerosis (PPMS) in 2010.
During that in-between time, when I was unsure if I had fibromyalgia, I told friends about my possible diagnosis. My friend’s husband had received a diagnosis of fibromyalgia. I recently found out that he later developed Parkinson’s disease. So was fibromyalgia a gateway to his Parkinson’s — and also to my PPMS?
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I am aware of many people with fibromyalgia who do not progress to other diseases. But what if there is a connection, even a slight one? That knowledge could lead to earlier diagnoses of other disorders and further research into neurological diseases.
Multiple Sclerosis News Today reported on a Canadian study in July 2018 that looked at the early warning signs of MS. Researchers found that fibromyalgia, a condition involving widespread musculoskeletal pain, was more than three times as common in people who were later diagnosed with MS.
A post on the Fibromyalgia Awareness blog lists symptoms that sound very familiar to those of us with MS: brain fog, pain, fatigue, and insomnia. Triggers, such as infections and stress, similar to those associated with MS, are also mentioned.
The blog dedicates a post to an episode of “The Dr. Oz Show,” where guest expert Dr. Sean Mackey explained that “fibromyalgia is probably not a disease of the muscle, joints, ligaments or tendons. But instead, it is fundamentally a disease or condition of the brain.” He added that with fibromyalgia, nerves could process normal sensations differently causing “excruciating pain.”
It is apparent to me from online searches that I’m not alone in my curiosity about a possible “fibromyalgia connection.” I’ve found blogs and articles that compare fibromyalgia and MS. The main difference seems to be that lesions are found in the brains of MS patients, whereas those diagnosed with fibromyalgia don’t have lesions. This article also points out that MS is an autoimmune disease while fibromyalgia is not.
I still wonder, though, if despite these differences, are the similarities enough? Is there enough anecdotal evidence to consider fibromyalgia as a starting point for other diseases? And if there is, could that knowledge be of help to MS researchers?
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
MS Owens
Good article but I wonder, was it fibromyalgia at all or early signs of MS? I have pushed back against my rheumatologist and neurologist, I feel like it's too easy to diagnose me with fibromyalgia versus to keep searching. I had a "ms like episode" at 20, then developed fibromyalgia around 24. I've had two more "neurologic flares" in my early 40's. Inconclusive MRIs. I guess time will tell but I do hope they look into the link further and if this isn't early warning signs. Like a canary in the mines.
Debi Wilson
Yes,exactly MS Owens! I too believe it was MS from the start. It would be great if they could diagnose and treat people sooner! Thank you for your comments! Best to you,Debi
Crystal Anderson
Four injections of MRI contrast(Gadolinium) gave me fibromyalgia. See Gadolinium Toxicity. MS patients are being chronically posioned.
Debi Wilson
Thank-you for your comments Crystal, I am not a fan of Gadolinium either. Best to you, Debi
Ellen
I commented but don't know if it ever showed up. I had an MRI at one hospital and there Gadolinium is not used routinely any more. Then for next MRI I switched to an ms specialist and went to another hospital, a university hospital, where gadolinium is only what is used. How do we patients get the idea through that we want an alternative? There is one.
Debi Wilson
Hi Ellen,
I’m not sure why your other comment didn’t show up. That’s a good question and I can tell you what I did. The first visit to my new neurologist I told her upfront that I didn’t want to use Gadolinium.She quickly replied that they have an alternative contrast dye, so I agreed to have the contrasting MRI.If they didn’t have an alternative I would’ve had her suggest another hospital that didnt use the Gadolinium. If she couldn’t,I would’ve found another neurologist or not had the contrasting MRI. I think the more people reject it, neurologists willget the message that they need an alternative.
Thanks for your question,Debi
Elle.
One of the hospitals I had an MRI at said they don't use Gadolinium any more b/c of concerns, Then I switched doctors and had next MRI at university hospital and I asked about contrast to find out they use Gadolinium ONLY. Rather disconcerting to me.
Toni marie Romano
They infiltrated my veins w the dye...i fear i have this too
Kimberly Pierce
Hi Crystal, I saw your post that you had the Gadolinium dye for MRI and that gave you Fibromyalgia. Can you tell me how you know that and do you also have MS? I have had over 7 MRIs with the contrast Gadolinium, I have been Diagnosed with Psuedo Tumor Cebri (swelling of spinal fluid in brain and eyes), also at same time diagnosed with MS (lesion the brain and positive in my spinal fluid) I have been going to so many doctors for so long and it sounds like I might have this contrast toxicity also. I am constantly sick and they say I have a virus or something that won't go away. Do you our any on else know what I should do? I'm a dog chasing its tail.
MS Owens
Yes! I see a direct line to/from my neurological flares! I understand my neurologists reluctance to diagnose me with inconclusive MRIs. One more flare and I'm assuming I will be and I am working closely with my neurologist and I really like her, so I'm sticking with her. I also have RA and both the neurologist and rheumatologist always like to talk about fibromyalgia but it just seems like I have such bigger concerns, I wish they wouldn't constantly put it on fibromyalgia. I suppose time will tell. Neurological flare #1 and #2 (the ones that started in my early 40s) were about 18 months apart. I'm right at 12 months since my last flare, so time will tell I suppose but it is hard to live in limbo-land.
Debi Wilson
I agree, MS Owens “limbo land” is terrible. I was there for years before my PPMS diagnosis. Good luck to you, Debi
MS Owens
Thank you Debi, I'm sorry about the PPMS diagnosis. It's very frustrating on some level. You're fine, you're fine, you're fine, maybe you have psychiatric problems, you're fine. Oh, never mind you have this awful disease.
Ms. Terry Cornett
Hi there, I'll try to make a long story short. In 2000 I was diagnosed w/Fibro due to new pain in my upper back and neck. Since then 9 yrs later I had widespread pain! Now 2019 most of the pain is taking over my entire left side of my body. During those years I've had up to 3 MRIs w/Gadolinium. The last CAT scan showed grey matter on my brain. I don't know what to think. Many docs were quick to diagnosis with fibro and many of us have gone w/o the right treatment. Starting today I'm asking my PCP for thoughts on gray matter. Hoping this makes sense. I have a niece that was diagnosed in her early 30s w/MS.
Kat Mac
Hello. I was diagnosed with fibromyalgia, rheumatoid arthritis, psoriatic arthritis and chronic fatigue syndrome 10 years ago by my rhuematologist. I know what my flares are like, I just had one that lasted more than a week. Could you tell me what the MS flare feels like? I need to find a good neurologist. My mother, her brother, her father and my father's brother all died from Parkinson's disease. When my mom was diagnosed they didn't seem to have good tests to determine it and they just based it on her family history.
April Tucker
I have been diagnosed with fibromyalgia and a few other thing's my sister has ms mom has fibromyalgia it's been at least 12 years since i was diagnosed i just turned 40 possibility of premenopausal moody short and patients is almost gone mind you I'm not in bad mood I'm very happy go lucky bubbly
Janet
May I ask what the flares were like? I have fibro but feel there's more going on. The MRI came back negative for MS.
Sonja
For me, a fibro flare is extreme pain down to the bone. You can’t stop the pain. This is in addition to a brain fog and severe exhaustion. I feel like I have a severe form of flu.
Just to be clear, I have pain and a plethora of issues each day, but flares take it to another level.
Hope you get to feeling better.
Dawn
Same here my thigh muscles stay extremely tight with so much pain it gets worse as I walk to where with flare ups I can't hardly move then of coarse add the hurting everywhere else on top of that. I've tried everything to loosen them and my meds don't help either nothing works but like u non contrast MRI normal just fibro
Liz Rainey
April , your story is a lot like mine . I've been diagnosed with FM , my sister with MS , Mom has FM . I'm wondering if I have MS and maybe Mom did too . ? I had no previous knowledge of MS in our family .
Shaheen akhtar
Thank you so so so much my dear God bless you ????????
Sandra
I certainly hope there isn’t a connection. I have Fibromyalgia and SLE and I certainly don’t want to add MS to the mix. However I do find this interesting.
SPMS & FIBRO WARRIOR
I have fibromyalgia and SPMS. I believe they are related. I now used an electric wheelchair and very limited walking ability with a walking frame. I am only 40
christina
I agree. I think fibro is ms. i got diagnosed 4 years ago. my symptoms i’ve had all my life suddenly got way worse. now they are saying ms but no proof yet. so i sit and wait for appointments to different specialists. only difference i’ve seen is i have total heat intolerance. they say isn’t a fibro thing but a ms thing. thank you for your post ت
Bonnie
Really? I have horrible heat intolerance that drives me crazy!
Jason G
I would have to agree with you on this. I do not think all of the people diagnosed with fibromyalgia actually have it. There could be a totally different illness going on and the doctors can not make heads or tails of it so they just slap the Fibromyalgia sticker on it.
Jennifer Ehrhart
It’s crazy the connection of MS and Fibro! I have both and believe Fibro much worse ?
Antoinette
Hello I have been dealing with fibromyalgia s/s since I was elementary. My mother would take me to the doctor for all these weird s/s I would have and the doctors would give me different dx all the time. One time I was on crutches for three weeks in the forth grade. They couldn't figure out why I lost the strength in .y legs for no reason. I had stomach issues, itching, hair falling out, muscle spasms, and other issues. No doctor new what was wrong with me. They said my stomach issues were because I had no stomach lining and needed to eat a banana when I first woke up. It made .y stomach hurt worse. When. I was 18 Dr. Knuckles told me I was to young to complain like a 80 year old woman , and needed to seek psychological help. It wasn't until I was 36 years old when I was dx'd with fibromyalgia. I didn't want to believe it. So, I went to several specialist. All of them dx'd me with fibromyalgia. Matter fact I was told I am a text book case of fibromyalgia. I was also told I'm not going to die but I'm going to suffer for the rest of my life. And he was definitely right. My father had MS. I have had several MRIs and have not been dx'd with MS. But all my siblings have some form of arthritis. My cousin have Parkinsons and was just told he may have been misdiagnosed. They say exercise but it makes me feel worse. It put me in the hospital with rapdomyalosis, and then it flared up my Sciatica nerves on both sides so badly I had to be put on steroids for three times in two months. I couldn't even put on my underwear without excruciating pain. It was the worse pain besides labor I've ever been though. I have two pages full of dx's mostly pain related. At first they use to say my father having MS had nothing to do with me. But we us to go through the same things same s/s. He passed away in 2019. Now they say genetic played a part. My sister read an article that said, " If a father has MS or an autoimmune illness then his first born or last born child is more likely to have an autoimmune illness. I'm the the last born child. And what's weird is I tested + for Lupus but they said not high enough to say I have Lupus. They say that's common for fibromyalgia. All I knows is it's a monster of an illness. I had an hysterectomy in 2010 . So did my mother and both my sisters. My There's a list with over 200 fibromyalgia s/s look it up. I hope things goes well for everyone on here. I've helped people get disability for free. I just give them advice that's all. If anyone wants help they can at [email protected].
Scott Chase
I sincerely believe there is a connection between Fibromylagia, parkinsonism/PD, allergies and autoimmune diseases (including MS). There are common gene mutations that cause a dramatic drop in dopamine (e.g. gs224). I had terrible Fibromylagia pain & neurological symptoms (so many MS-like symptoms), until I was easily treated with a simple generic drug to restore dopamine levels (levodopa-carbidopa). Severe allergies, parkinsonism, Dopa-responsive dystonia, and autoimmune diseases all run throughout my family (including MS). Do different combination searches on these terms. I believe the common link in some cases and families may be genetic dopamine-deficiencies (e.g. gs224).
Debi Wilson
Thanks Scott, very interesting information! Thanks for sharing! Best to you, Debi
Justine Cameron
Hi Scott,
Our family is very similar with a history of Dopa Response Dystonia, Fibromyalgia, Allergies, Food sensitivities and intolerances. We have wondered for a while if everything is related therefore really interesting to read this.
Thanks
Justine
Debi Wilson
Thank-you, Justine! Best to you, Debi
Mer Blair
My mother was diagnosed with polymyalgia, so I am not surprised with a fibromyalgia connection. My brother, my sister, and I have MS,
Pat Dalton
I have been diagnosed with fibro by at least 6 drs of all kinds. Now this week one has added polymyalgia also. Only difference is much more relief from the prednisone than the pain pills and injections of lidocaine. What’s a girl to do? No cures and I am 75 so I will never know if dx was correct!
Debi Wilson
Thank-you for sharing your story Pat! Wishing you the best, Debi
Amy 73
@Mer Blair @Debi Wilson
I'm sorry so many of you and family have MS & autoimmune issues. May I ask if you all present the same or what MS flares are like? I so far have a Lyme diagnosis but prior to that got strange leg pains that would come and go maybe 2x a year. I do not have heat intolerance, more-so cold but my current symptoms with Lyme flares seem to be somewhat similar to MS flares. I don't have bladder issues but have twitch/pulse like feelings in various areas more-so in my legs, leg pains in the quad area & sometimes bicep pains/knots that come/go. I get pinch like feelings at the ends of my fingers intermittently but not too frequently. I think these are exacerbated by fatigue/less sleep, possibly weather changes. I just wonder if MS is Lyme or Lyme is MS or all of these things are connected or infection brings about other things like MS or Fibro. I've never had MRI done & didn't have enough pressure points (had them but not enough) for Fibro. My aunt has polymalgia, arthritis runs in my maternal family. My Dads grandfather had late in life Parkinsons. So all this info worries me. I wonder if I should do genetic testing .
Scott Chase
The dopamine connection is just starting to be considered by researchers: 'The Dopamine Imbalance Hypothesis of Fatigue in Multiple Sclerosis and Other Neurological Disorders'. I was told by my neurologist that there was no reliable test for a dopamine-deficiency, and that a trail of levodopa was the only way to know if it would be effective. I've been very fortunate to have had a 90% reduction in neurological, pain, muscle, fatigue and other Fibro symptoms, with simple levodopa treatment. The possibility of prophylactic effects of levodopa treatment might also be a consideration.
Debi Wilson
That’s a great reduction in your pain! Good luck for your continued success,Scott! Debi
Reeno Walsh
CBD! So many auto-immune diseases can be helped with CBD! Look on projectcbd.org and start learning! Also, CBG is another cannabinoid that is neuro-protective and is tremendous in helping with MS, all auto-immune disease and....helps raise dopamine levels. My dad went though 2 research programs into Parkinson's at Yale and Duke and in the end....he was very sedated and his memory was non-existent. Look into CBD and get on that website!
Vickie
Thankyou for this information.
Michelle Benoit
I have been diagnosed with both fibromyalgia and MS. Not only did they do the trigger point test, I’ve also had a blood test that confirmed fibromyalgia. About 2 years later, it was suggested to me that I needed to be tested for Ms after an EMG, where the doctor said he had never seen such little nerve condunction in anyone under 70! I went to a neurologist who ordered all the tests, then she went on maternity leave. While she was out, I checked my results online, and both the MRIS and spinal tap confirmed MS. When she finally came back, she met with me and told me I do NOT have MS, despite the test results. I waited about a year, and when my symptoms started adversely affecting my mobility and ability to work, even from home I sought a second opinion. I found out I do have MS and also fibromyalgia. They seem to work together to kick my butt extra hard. I have been essentially bedridden since the beginning of the year. Doctors don’t wanna help, it seems. Before my MS diagnosis I had a small pain prescription. Since the Ms diagnosis, I am getting nothing but antidepressants for pain? I do talk therapy and physical therapy and yoga when I can. It may make a small difference but really not enough.
I really believe the 2 are related.
Debi Wilson
Thank-you for sharing your story, Michelle.I am so sorry for what you are going through, I can’t imagine! Blessings to you, Debi
Scott Chase
Michelle, I went through a similar back & forth for 18 months, about four years ago. In addition to being diagnosed with Fibromyalgia (trigger points, pain, fog, etc.), I also had many MS-like neurological and muscle symptoms. Since my brother has MS, I therefor had multiple MRI scans, which to everyone's surprise continued to came back negative. I was in miserable limbo during those 18 months, and even had a Rhumatologist tell me there was nothing else that could be done. The one additional clue was that I also had twitches/tremors in my fingers, which I previous had a GP simply called "interesting". My neurologist was willing to try the levodopa-carbidopa treatment, and it worked to calm my muscles and get the nerves better functioning again. A sufficient dopamine level is critical for nerve & muscle functions, in addition to so many other things. A dopamine-deficiency should be considered, especially when there are telltale signs, like twitches and/or tremors.
Cristina
I've been back and forth for 2 years as well with still no definite diagnosis. I've had MRIs that show lesions but the spine tap was not conclusive with MS.so they believed the lesions could be due to trama since I had an accident a fee years back. Now I'm needing to see a neurologist to check on the lesions. But I also have wide spread trigger point pain thag got me thinking it might be fibromyalgia as well or instead of MS. Its all very confusing. There is so much guess work. I just want amswers. :/
Debi Wilson
I understand Christina, receiving my diagnosis of MS took years,it was very frustrating! I hope that you will receive a diagnosis soon so you can find out what you are dealing with. Best to you, Debi
Cherri Suchanek
Just a question ? Has anyone had to have the needle test from a neurologist done for Fibromyalgia diagnosis? After many years of horrible pain I was diagnosed in 2000 with Fibromyalgia things only went down hill from there !! But I'm curious about the needle test ?? Was VERY PAINFUL
Debi Wilson
Hi Cherri,
Are you talking about a spinal tap? I haven’t heard about that for fibromyalgia only MS. If you had that done they were probably ruling out MS.
Thanks for your question, Debi
Denise
I had a spinal tap with results inconclusive but an MRI scan confirmed Ms, in the Ms society they don’t believe spinal taps are needed as more often than not they show nothing at all.
Leslie
My doc ordered a regimen of antiviral acyclovir and and antibiotic. It really made a significant difference in the neuropathy. Not sure why it works.
Debi Wilson
That’s great that is making a difference for you, thanks for sharing!
Andrea
To my nursing knowledge and personal experience there is no blood test for fibromyalgia. MS is diagnosed by specific proteins found in spinal fluids and or lesions on the spine or brain ( Central Nervous System). My neurologist says I have a genetic neuromuscular disorder that affects my Sympathetic Nervous System (the one that controls your fight or flight responses). I also have peripheral neuropathy (nerves in arms and legs), Fibromyalgia and Chronic Fatigue Syndrome which the CDC has now declared to be an exercise intolerance disease rather than a Syndrome (a Syndrome is a group of common symptoms). I get weaker every year. I will be 60 this year. I have been on social security disability for 5 years. I went to a Muscular Dystrophy Clinic at IU Neuroscience center, the neuro specialist told me there was nothing she could do for me. So frustrating! I too believe there is some underlying connection not yet discovered. The dopamine thing makes since to me. I hope I don’t get Parkinson’s but it would surprise me. I know 2 women with MS. I have all the same symptoms especially since fibromyalgia symptoms are so similar, but yet I tested negative for MS. The government and other organizations should be doing much more research as so many people are becoming disabled.
Kimmy
Nurse here too. I was in hospice. I had a pt who wasn’t diagnosed for over a decade. Would just randomly wake up not able to walk and need rehab. Had soooo many spinal taps and mris. It finally showed lesions on the brain but spinal tap never showed positive. Sooo frustrating and confusing. I have lesions but spinal tap was negative. Did not get diagnosed. Was told maybe fibro but they didn’t know lol grrr
Linda Carol Mesa
I hate it when the doctors are so wishy washy. One says yes, one says no, one says age, one says weight, another says yes.... Come to find out I have ms, fibromyalgia and hypoglycemia, as well as ptsd. Because the doctors are so inconsistent I deal with all these daily symptoms on my own and end up hospitalized when they get too severe
Deirdre
Hello! I also have MS and Fibromyalgia! I was fortunate to have a doctor in college in 1992-93(?) diagnose me. Then in 2003-2004 I was diagnosed with MS. I asked if that canceled out the Fibromyalgia and they said sorry no.
And no, the gando that is given for MRIs doesn’t cause Fibromyalgia because I never had one until my MS diagnosis. It does give me a slight headache but that’s it.
Donna manosh
Talk to your doctor about Savella. Its working great for me, i have fibromyalgia.
Chloe Reid
I seem to have done it the other way round. I've been diagnosed with RRMS for 10 years, but last year my wonderful physio was the one who finally listened to me regarding my widespread joint and muscle pain. All rheumatology tests come back inconclusive, so they put it down to the MS - neurologist says it's not. Repeat a few times over a few years! Just in an idle chat at the end of a session, my physio asks more questions about this. She suspects fibromyalgia developed after the MS. Did I want another referral to rheumatology, to go through it all again...? No thanks. We agreed the best approach to treatment is what I'm currently doing for my MS anyway, and I'm already taking more meds than I want. I don't need another label - it's just so nice to have someone listen properly and take these aches and pains seriously!
Debi Wilson
Hi Chloe, I’m glad you found a good doctor that will listen to you! But, I am sorry thatbyou have to go through so much pain. Thank you for sharing your story with us! Best to you, Debi
Steve
Very interesting article. My dad had MS for 30 yrs before passing away a few years ago. In 2000 I was diagnosed with fibromyalgia and had always wondered if there was some sort of link between the two. Also, 3 years ago my mother was diagnosed with ALS and has since passed away. I had asked her neurologist if he thought it was odd we all had 3 different diseases and he kind of just shrugged it off.
Debi Wilson
Hi Steve,thank-you!
That is interesting about your parents, I really do feel there is connection. Thank-you for sharing your story! The best to you, Debi
Tina Brown
My Aunt died of ALS, My Great Aunt had Parkinsons and me and my brothers have horrible arthritis! But try to find a Doctor to help these days!
Boni S Leszczuk
I started getting tested for MS when I was in my early 20's but they could never get a positive so they tried other things and everything came back negative so they just said must be fibromyalgia even though I never really had the tender points just pain and horrible spasmic muscles and headaches and nerve issues. I kept going back and forth with different doctors and neurologist. With no positive for anything until last May 2018 when I got a positive for MS even though they said some of my lesions were a-typical. I do wonder if these early symptoms were a warning or an early sign. It is hard to find a good doctor who understands my story and my history and path because I have been in pain so long and have learned to live with it with medicine because I also am bipolar and take a lot of meds for that so I can not add a lot of new medication. It took a long time to find my meds for my mental health and now I am struggling to find meds for my MS and it is just beginning. Maybe in the future there be a better way or another way to diagnose or ways to define the path to MS.... I don't know if I am saying this right, but thank you for letting me speak my mind.
Debi Wilson
Thank-you for sharing your story, Boni! I know how frustrating it can be and i’m sorry you had to go through that! I notice you signed up for the MS forums today, I’m glad we can chat there also!
The best to you, Debi
Margaret Hamilton
I've often assumed that fibromyalgia is also an autoimmune disease. Do we know if it affects more women than men (like other autoimmune conditions)? I'm afraid the medical profession is still too quick to dismiss early presentation of vague symptoms like pain & fatigue as signs of mental problems like depression and/or anxiety.
Debi Wilson
Hi Margaret,
From what I’ve read, fibromyalgia affects women more than men, the percentage is even as high as 90% women.
Yes you are correct, the medical profession can easily dismiss vague symptoms. Thanks for your comments! Best,Debi
MS Owens
I think Fibromyalgia is not considered an autoimmune disease because it doesn't cause damage and isn't degenerative. My understanding is an autoimmune disease is your own body attacking itself (I have RA as well as possible MS). My rheumatologist said it's basically a pain disorder. It does affect women disproportionately though.
MS Owens
My understanding is Fibromyalgia is not considered an autoimmune disease because it doesn't cause damage and isn't degenerative. My rheumatologist said it's basically a pain disorder. It does affect women disproportionately though.
Bone pain is my name
I have had severe pain, the dr asked me if the pain was in my muscles or joints. I said neither, it feels like bones are breaking from the inside out. It was horrible bone pain. They tried me on all of the 5 different meds for fibromyalgia, lastly being Lyrica. It was like a miracle drug for me. But I wonder if the diagnosis is correct, because no one else has said it was bone pain with the cause being fibromyalgia. What do you think?
Donna Manosh
I have fibro and am taking Savella and lyrica The lyrica really helps what the Savella doesnt.
Cheryl Wall
I have always had bone pain during a severe flare. I wrap my arms and legs individually in throws or towels and it seems to ease the pain somewhat. As you probably know already, during a severe or lengthy flare there is no drug that completely eases the pain. I have also been on the MS/fibro/lupus roller coaster. One neurologist told me when I die of old age and an autopsy is performed there will be a comment, "Oh...and, she also had MS"!
Jamie Z
Years ago I told my Dr. my Fibro felt like bone pain, I use to body build so I know what muscle pain feels like. I had a nerve conduction test, DX with idiopathic peripheral neuropathy, chronic fatigue syndrome. My Doctor says, my Fibro is a precursor to MS. MRI’s are still negative. Next will be a spinal tap.
Lauren
Lots of interesting information here. I just wanted to add my experience with fibromyalgia. I was increasingly having balance issues. I saw five neurologist who ran numerous tests oh, and there was some question that I possibly had MS. It was ruled out, however. On my own, I researched balance issues and fibromyalgia and learned that it frequently appears and is often due to a B12 deficiency. By the third week of receiving B12 injections my balance issue was gone. I remember reading how B12 injections are also very helpful to many people with MS.
Debi Wilson
Hi Lauren, thank-you for sharing your story! Best, Debi
Tina Brown
I spent 2 years with an Osteopathic Dr for an unstable SI joint....I did prolotherapy which are injections that gave me new ligaments! He also gave me B12 injections! Eventually, I got better and went back to work!
Juanita Russell
I've had fibromyalgia for more than 29yrs MRIs and scan all normal never had a spinal tap but if you surcharge all fibromyalgia symptoms I have 90 precent of them I use cymbalta tramadol and just started a new injection for migraine I have balance problem but I take a medication for essential tremors were my hands tremor and my head bobs up and done also my chest plus my voice changes the difference between these and Parkinson is tremors for Parkinson get better with activity esitial tremors get worse with activity
Debi Wilson
Hi Juanita!
I’m sorry you’ve had to live with so much. Thank you for sharing your story! Best to you Debi
Scott Chase
Juanita,
My family story sounds similar to what you've described. I am so grateful that I saw a neurologist at age 50, who helped recognize that what I had may not be MS [yet], or PD [yet], or even an essential tremor [yet], but rather parkinsonism resulting from low dopamine production. I still believe there is a chicken-egg link with much of it, as genetic-causes of low-dopamine can be a risk-factor for future PD (etc.). If Carbidopa/Levodopa therapy resolves a tremor, it is actually not an essential tremor, but a tremor resulting from low-dopamine. In my case, it resolved head/neck & movements symptoms, MS-like neurological & muscle symptoms, as well as most Fibromylgia symptoms too. I am so thankful for my neurologist, who was willing to attempt the Carbidopa/Levodopa therapy, which has been extremely effective in my case.
Amy 73
@Scott Chase
Not sure if you will reply as this was an old post. May I ask what test they did to determine parkinsonism or low dopamine? I had what I describe as internal tremors on one arm from elbow area to wrist/hand. I can feel them but not see them as my arm isn't moving or flopping and they were always lying down position, upon waking. I also get the twitches which my Lyme doc believe both that and deep muscle pains are from Lyme. I was negative on my ALA, normal SED rate, normal thyroid level, etc but positive for Igm Lyme. I recently found out my paternal great grandfather had Parkinsons, no ALS on either family although the twitches scared me and no MS but arthritis and polymyalgia on maternal side. I hope nothing is going missed for me- I do have flares which are supposed Lyme flares but so many diseases and syndromes overlap. I feel that within all the diagnosis' genetics and infection together probably plays a role, along with vitamin deficiencies- my D is awful from Fall - Spring in New England climate and my body feels it immediately.
Julia
I have been diagnosed with fibromyalgia for many years . In 2013 I had so much pain and fatigue and the doctor I was seeing said go talk to someone it is just fibromyalgia. Well hadany test neurologically they said I had white matter brain and all of other tests were fine . A few months later diagnosed with stage 2b breast cancer .... I have had migraines that come with full blown light shows aura and pain I’m my temples sometimes stabbing and crawling feeling in my wrist under my skin . Most recent MRIS showed 3 lesions which they are saying are just from migraines . I often wonder I have twitching and tingling in my cheek and eye. I am currently receiving Botox for migraines. Always wonder about the lesions.....
Debi Wilson
That is interesting, Julia! Diagnosing is like a puzzle sometimes, and frustrating! Thanks for sharing!Best to you, Debi
Scott Chase
Julia,
I also had twitching in my eyelid, lip & cheek, as well as tingling & numbness that would come & go in my face, arms, fingers & legs. I had terrible headaches, too. Doctors thought the headaches were just migraine headaches, but we later discovered that many were a result of the muscle spasms & knots in the shoulders & neck, because the nerve signals to my muscles were impaired because of my low-dopamine. In my case, nearly all of these neurological & muscular symptoms were the result of a common, genetic, dopamine-deficiency. A simply trial of inexpensive carbidopa-levodopa therapy restored my dopamine levels, and has been extremely effective in resolving a myriad of symptoms for me.
Sonja
Find another doc who will look at your symptoms more closely.
Peggy
Was diagnosed w/fibromyalgia in 1996. Fibromyalgia is very much an autoimmune disease! Was forced to retire in 2012 due to fibro & have been receiving disability since 2015. Fibro is recognized as a permanent disability.
Debi Wilson
Hi Peggy!
I am very glad to hear that now people can claim disability with fibromyalgia! With my research I didn’t find anything that said fibromyalgia is an auto immune disorder , But it doesn’t surprise me that it is! Thank you for your comments,Best wishes to you, Debi
Trisha
There's a huge connection! Mitochondrial dysfunction! It's why some people with MS have such success with the Wahl's protocol. It supports the mitochondria. Same with fibromyalgia mitochondrial support makes a huge difference. We're just scratching the surface of understanding mitochondrial dysfunction and how many disease processes it causes
Debi Wilson
Interesting,Trisha! Thank-you for sharing that information! Best, Debi
Nyk Kelly
So glad to have read this! I was diagnosed with fibromyalgia in 2000. At that time, doctors despised this diagnosis. I've had less than 5 decent doctors during and since...
My balance has been horrible, I had a rash which turned into an autoimmune nightmare.
I'm certain I had fibromyalgia YEARS before diagnosis, since I REALLY LOVED to work.
I now live in a very rural area, with little or no specialists anywhere near our area...
Thanks again. It's nice knowing, at least, that what you believed, may indeed be true.
Debi Wilson
Thank-you for your comments and for sharing your story Nyk! Best, Debi
Freedom
Your born with fibromyalgia you catch it or spread it..... It is how the brain processes pain... Western medicine is useless because they haven't even been trying to figure these diseases out..
Billions of dollars a year into research but where does the money really go not into medicine... I was diagnosed 30 years ago and nothing nada zilch has changed since.... I feel bad for the kids being born with these diseases today they have 2 life times of suffering ahead of them... There's not alot of decent people in the world.... So there will never be a cure just bandaid drugs that don't work and make symptons worse... But anyway have a great holiday watch a good movie... All the best
Joe
I hear you. Whatever caused my rash also ate half my thyroid, caused leaky gut & extensive food allergies. Had already been diagnosed w fibro. Also chronic fatigue following scarlet fever. Have since been told I also have arthritis & auto-immune disorder. & suddenly very high BP. Cannot tolerate meds at all. Have had several episodes of extremely limited movement. Strangely, I have the highest pain tolerance of anyone I know. Don't know how I would've survived otherwise. Get spasms in my spine that bring me to my knees.
Anyway, I find natural supplements help: valerian for nerve pain & sleep issues, hawthorn for heart health & BP, Thyrosense + a host of other things to supplement stuff that gets low esp in winter. No reply nec. Just hang in there. BTW, women more likely to get this because of smaller bodies, greater suseptibility to toxins, esp insecticides now banned (which are responsible for all these issues). For some great info on natural healing efficacy look up joint studies of U's of T & S AB.
Ms Barbara
When I first started to show symptoms of ms they had no idea what was wrong. I had “unusual” symptoms. I don’t think f b was known yet. They started telling me it was all in my head but I should see the dr every month. I was also told at that time the only way to know for sure if you had. Ms was an autopsy! Finally a doctor did an awful spinal tap and tested the liquid and my diagnosis was “possible ms”. This started way back in 1977. My ms has progressed very slowly and for that. I am very grateful but the nerve pain is unbelievable. The progress that is being made today is fantastic and hopefully we are close to the cure. Thanks for listening to an old lady surviving ms.
Debi Wilson
Hi Barbara,
Thank-you for sharing your story! I am glad that MS has been moving slowly for you. I can relate to what you said about Doctors thinking it’s all in your head. Isn’t that frustrating! I feel we are close to a cure also, that day will be amazing! Best to you! Debi
Donna
I was diagnosed with fibromyalgia at 24. When I hit about 50 I was falling with dizziness, vertigo, postural hypotension, bladder incontinence. I had a complete workup with a neurologist who specializes in MS. It's not MS. I have Pernicious Anemia. I am being treated with loading doses of B12 and I am healing. I was also deficient in vitamin D. Since bringing my levels up my pain is considerably less.
Debi Wilson
That is amazing Donna, I am glad that your doctor discovered the problem. Thank-you for sharing your story! Best to you, Debi
Christine M Jeannotte
I was diagnosed with RA back in 2015 after a major flare up,some swelling in all joints PAIN every where. I had a seizure disorder since 2010 as well and did have a seizure at the time of the flare up. I was started on methotrexate and had a reaction then put on other meds..had the 2015 attack and got my diagnosis but had pain like someone was pulling my nerves out of my body in all areas trigger point diagnosed with Fibro. I do have family with diagnosis of MS ,I think there must be some connection....
Debi Wilson
Hi Christine,
I’m sorry for all you have been through.It does sound like there is a connection between fibromyalgia and MS in your family. Thanks for sharing your story! Best, Debi
Linda
I, too, have lived a life full of pain, dizziness, neuro problems like electrical zaps in various places and muscle spasms, spinal pain from top to bottom, chronic leg and ankle swelling, a-fib, hearing loss, and the list goes on. I started with some of these symptoms in my early thirties and my doctor said I had an exotic phenomenon. I have flares that make me look like I’m having a stroke where the left side of my face, shoulder, ribs and sometimes down to my heel, feel like novacain wearing off and my eye and corner of my mouth droop. It wasn’t until the 1990’s that I was diagnosed with Fibromyalgia. I was relieved that my condition was validated. But that diagnosis has become a waste basket diagnosis. I am now 69 and have gone through so many tests, MRIs, some with contrasts, ( which show bulging discs but nothing is ever done for that). I have an appointment with a neurologist this week as my latest symptom has been excruciating right ear pain flares with no “apparent “ reason. I’ve had two doctors tell me it’s Post Herpetic Neuralgia from shingles. I had a neurologist put me through all the painful tests, including a spinal tap as well as a sleep study. When I returned for my follow up all he said was that my urine tested positive for marijuana. I don’t use it and am never around it or any other illicit drugs. I believe my urine was switched with another patient’s at the sleep study. He offered no other information at all . That was 20 years ago and the records have been destroyed. At the MS Center in Atlanta I had a compassionate doctor who said she didn’t think I had MS but I did test positive for an autoimmune disorder. Interestingly my ANA shows positive at times and negative at times. I feel my symptoms line up with MS. I don’t necessarily want that diagnosis but sure would like the right help as I’ve tried so many meds and had so much physical therapy.
Debi Wilson
I understand you don’t want the diagnosis of MS, but you do want to know what’s going on. And,it is good to have a name put to what you’re feeling, so you can deal with it. Good luck to you, Linda! Debi
Gretchen Laubach
I have been diagnosed with fibromyalgia, sjogrens- my neuropathy has gradually worsened.
during the time I was in the diagnostic phase of the disease. I had an MRI of my brain and the physician had noticed that I had a plaque on one side of my brain. The physician commented that he thought I had MS but changed his mind as with MS, plaques are on both sides of the brain.
any comments?
Debi Wilson
Hi Gretchen,
MS can be difficult to diagnose.if you haven’t already a second opinion may be a good option. Thank-you for sharing! Debi
Michele Murray
The Plaques are not mirrored on both sides of a brain in MS. You could have them on only one side. I would see a MS specialist.
Robyn Marzoni
I am glad to have come across this article. I started having problems about 4 months ago. I was a power lifter and worked out with some pretty serious weight. I slowed down a bit after my right wrist started to bother me. Then it started becoming numb in my sleep to the point that it would wake me up. I told my GP and she said we would keep an eye on it. I then got sinusitis and was sick for about a week and a half. Out the middle of nowhere my left hand started feeling like my right. Followed by problems with my neck and back. GP said fibromyalgia. I got to the point where my arms were so weak, I could not dry my hair. This wasnt long after I set a personal record of dead lifting 230 pounds. Went from that strong to not being able to hold a blow dryer. The neuro I saw did a cervical spine MRI as he was certain it was a disc and results were negative. He referred me to another neuro after saying MS could be possible but he was certain it wasnt fibromyalgia.
About a week ago the internal shaking started. I feel like I am constantly on vibrate. For a few days, I feel fine for the most part and then other days, I feel like I got hit by a truck especially in the morning. All 15 blood work panels came back normal so no lupus or B12 deficiency. I am 2 weeks from a brain MRI and EEG. I just feel scared and not sure how to relate to anyone as "undiagnosed".
Debi Wilson
Hi Robyn,
I’m sorry for all you have been going through! I hope you are diagnosed soon so you can put a name with your symptoms. I know how frustrating it can be to have symptoms for years and they can’t figure it out. Take care of yourself and thank you for sharing your story! Debi
RO
Check out Sensorimotor Polyneuropathy. It's a form of peripheral neuropathy and you sound like you have the exact same symptoms as those like me with Sensorimotor Polyneuropathy.
Angkaystiver
Some have mentioned a zapping feeling . I have had cycles with the feeling of being shocked . It runs through my head neck and chest with a buzzing sensation. I was suspecting ms as my symptoms were getting worse but ended up with stage 2 breast cancer. After surgery and chemo the nuerapathy was horrid for years. Had a CTscan but no lesions. Medicaid denies MRI's. Got disability for fibro but I think it's more then just that. If anyone can reccomend drs in southern Oregon I am new to the area.
Chere
I was diagnosed 25 yrs ago with FMS. I found this very interesting reading. I also have DDD (degenerative disk disease),DJD ( degenerative joint disease), plus normal B/P stuff etc...
My dad has Parkinson’s and I worry about getting that.
My FMS is controlled very well with Savella but I do get flares, those are bad. Will be interesting to see if they get a link that shows this is all precursor for MS or who knows what.
JoAnn
Interesting. When I first “got sick” doctors couldn’t figure out what it was. I had a lot of nerve pain and all the other stuff that goes along with fibromyalgia. My doctor did do a spinal tap. I had one and a half bands of the protein that is present when you have MS, in my spinal fluid. If it had been two bands the diagnosis would have been MS, but because it was only one and a half, it was not. I was later diagnosed with fibromyalgia. However, later also diagnosed with SLE. There is more going on between all these diseases. Whether it is environmental issues or whatever, there is a correlation.
Susan Roviaro
I was diagnosed with fibromyalgia about 20 years ago. About 10 years later, osteoarthritis. Two years ago, Sjogren's was added. Nothing has helped so far. I keep wondering what disease is next for me.
Kimberly Pierce
Hi Crystal, I saw your post that you had the Gadolinium dye for MRI and that gave you Fibromyalgia. Can you tell me how you know that and do you also have MS? I have had over 7 MRIs with the contrast Gadolinium, I have been Diagnosed with Psuedo Tumor Cebri (swelling of spinal fluid in brain and eyes), also at same time diagnosed with MS (lesion the brain and positive in my spinal fluid) I have been going to so many doctors for so long and it sounds like I might have this contrast toxicity also. I am constantly sick and they say I have a virus or something that won't go away. Do you our any on else know what I should do? I'm a dog chasing its tail.
Donna L Troy Tankersley
I was diagnosed with Chronic Fatigue syndrome /Fibromyalgia in 1994.I spent two weeks in bed because my then boss threatened to take me to my Doctor. I credit her and a coworker for recognizing I was in a health crisis. I have NAFLD, stage 4 cirrhosis, NASH and type 2 diabetes. I had 2 strokes in 2016 from chronic migraines (9month migraine.) I was a medical Coder and biller for a surgical group and I was unknowingly failing at my job during that year because I lived in a fog. I was diagnosed with strokes at San Antonio Military Medical Center as well as the liver Disease. It was one health problem after another and my new marriage did not survive or should I say my then wife could not deal with my health issues and her colon cancer diagnosis. Now I am remarried and searching for answers to my illnesses by way of a clinical trial for a cirrhosis medicine, dietary change, great partnership with my wife and a Primary Physician willing to listen and not blow me off. My concern is will I develop MS or Parkenson's like my 2 first cousins?
I have a number of symptoms of both deseases.
Marisa Taul
I was diagnosed with fibromyalgia in 1998. I started having worse issues in 2008 and progressively getting worse that I had to quit working in 2013. I had negative MRIs. The last one having a little change but still unremarkable. I had a spinal tab 2 years ago that showed 4 bands that was that of MS. I could not get a definite diagnosis. I followed up with the MayoClinic a year ago. They said they were not convinced I had MS but I definitely have Chronic Fatigue and Chronic Fibromyalgia. So basically I am in limbo again. I have to basically wait for something else to happen before they will diagnosis MS. Has anyone ever had an issue like this? I'm so confused at how they can basically take a positive test and throw it out because they are not convinced.
Jeannie
Has anyone ever been diagnosed with fibromyalgia then 4 yrs ago diagnosed with Polymyalgia rheumatica
Now my daughter is having symptoms. If there is a connection between fibromyalgia and MS is there a connection between Polymyalgia rheumatica and MS
Rhonda Jackson
I've done the mri no dye ,no lesions seen but was told no ms , but yet fibromyalgia. But yet I have pain yes , but my left thigh goes numb and a get the zaps in my hand. I personally think its something other than fibromyalgia.
Freedom
Hello fellow sufferers I was diagnosed with fibromyalgia over 20 years ago by a specialist in Manhattan on 5th Ave.... As far as I know your born with fibromyalgia.... I'm old now but I feel bad for the kids born with MS or FM it is a nightmare and chronic.... Diet vitamins healthy gut all help alot and you can feel good but I have no idea what it is to feel normal.... Fibromyalgia does not damage the nerves in the body... It causes pain without any physical signs of damage according to a neurologist and any test they have done with MRI and cat scans... MS does damage the nerves and destroys the coating of the nerves causing permanent nerve damage.... FM according to recent studies is an over active brain which causes the body to be overly sensitive and reacts badly to pain my example would be when I stub my toe it feels like it got hit with a hammer.. So if you have the worst menstraul cramps and the doctor looks inside your body there would be no damage to the tissues muscles or nerves... Pain dies not always mean damage was done to the organs.... So basically the difference is MS causes damage to the body and FM does not cause damage...... Either way it's painful and there's no cure...
Steph
These comments are so similar to what I have it isnt even funny. When I get more pain or unable to walk 'just your fibro, exercise more!' I started having issues in 2017 at the age of 18. Two MRIs at the first months starting to have trouble with no results. Gone to three neurologists, been referred to a psychiatrist three times ,going for number four since I started having essential tremors and stuttering fall of 2019 following a flare. All three times told I'm fine mentally, so we will see what number four says! Asked my CNPs nurse what after this if I come back normal, she didn't have a response.
Pierra
Look up: Radiologically Isolated Syndrome
Michelle
I was diagnosed with fibromyalgia in 2008. My pain is extreme and feels deep like to the bone deep during a bad flare. Nothing has been able to ease this pain. I've tried medical marijuana but the most relief I get from it is a settled stomach so I can tolerate soup other wise I couldn't eat at all and sometimes a sedative effect so I can get a couple of hours sleep. My muscles tear as those of an athlete but with much less strain. Brain fog, memory problems and not being able to say words I've known since I learned to talk correctly is a big problem. I sound drunk or like I've completely forgotten how to talk most of the time. No energy, constant fatigue is always an issue. I don't know if it could be more than fibromyalgia. I've had blood test to check for auto immune diseases but nothing more. I have difficulty explaining things to my doctor because if I mention a new symptom his reply is it's probably just your fibro.
J Cullins
Many years ago in my 40’s, I was sent to a neurologist and a MRI was done and I was diagnosed with migraines. The doctor said I had bright, white lesions on my brain but said that he thought they were caused by my migraines. I had told him about the walking and balance issues I was having but no other testing was ordered. I definitely had very painful migraines but also a lot of other odd “things” to happen. There are times I will have very painful, squeezing cramping around my torso. Vertigo when everything turns around and upside down and I have trouble keeping my balance if I turn my head. The sensation of cold water trickling down my legs. And not least of all, dropping things because my fingers just don’t cooperate sometimes. I was diagnosed with fibromyalgia in my early 60’s and I don’t doubt I have that for sure. My true doubt has been that I’ve also had MS all along and I’ve just had to cope in silence and pain. As of last year, I had an orthopedic surgeon tell me that many doctors don’t believe fibromyalgia is real, even today and he is one. Had I had a more thorough medical work up those many years ago, would that whole attitude be entirely different? Yes, in too many cases, unfortunately. I will say that if I do also have MS, I feel that it has been the relapsing - remitting type. It does seem, though, that the older I’m getting, the incidences are happening so often that something’s changed and not for the better. Thank you for getting information out there for us and our future generations.
Rhonda
What a great article! I’ve wondered for some time if fibromyalgia could be a milder form of MS. I have many classic symptoms of MS, but no brain lesions. I’ve also wondered if my mother smoking in utero could have had an effect. Thank you for giving me some insight into this.
Amanda
I have fibromyalgia but had an MRI scan of my back as a senior physiotherapist thought that my symptoms pointed to a neurological problem, and they found lesions on my spine but neurologist said my problems were due to medication overuse.
David
I was diagnosed with fibromyalgia I think 2 years ago and I always felt that it was a bit of a cop-out by the doctors because they either couldn't understand or maybe there were things that I forgot to add which could be possible. Since then, I feel as if I'm getting worse. Admittedly my voice doesn't get strangled as much as it used to thanks to medication but in instances like this morning when trying to do an exercise to relieve pain, I could turn to my left but I couldn't turn to my right unless I put a lot of pressure into moving but it was hard. I realise I can't say anything until properly diagnosed but this piece at least makes me aware that I'm not imagining things and that there's always a possibility that there's something else.
I do feel relieved that I got some form of diagnosis but with the way the Irish health system is, it took a long time to get that diagnosis and even when diagnosed with fibromyalgia, the letter they wrote put it down as Chronic Pain Syndrome which felt like a cop out on top of a cop out. I still qualified for disability but it just feels deflating.
Thanks again and I'll try and monitor and remember these things that happen to me.
Charline
I was originally diagnosed with fibromyalgia by the same tender point test. I also had a weakly positive ANA, which doctors in 2002 considered a false positive because none of the texts for lupus, RA, etc were positive. Later, in 2017 I became extremely ill with similar symptoms as on 2002 plus more. This time I was diagnosed with Mixed Collagen Vascular Disease. In many ways, I think people with autoimmune diseases who were diagnosed with fibromyalgia actually had the precursor to an autoimmune disease like ME, lupus, RA, and more. The tender points also line up with bundles of lymph nodes and nerves. I had swollen, tender lymph nodes at the original fibromyalgia diagnosed that were present again with the MCVD diagnosis. This kind of issue should be considered when texting for fibromyalgia. If the ANA is positive, then there may be an autoimmune disease lurking in the background.
Mom of 4
Hello Everyone, I feel like I have been on a roller coaster ride. I was given a half-hearted diagnosis of Fibromyalgia in December 2020 after many tests (MRIs, bloodwork, a lumbar puncture) to rule out multiple diagnoses. MRIs found lesions on the brain but I am told they are not indicative of MS based on the location. I still feel like I have been experiencing MS-type symptoms. Seems like to road to diagnosis can be a long journey. Not sure which avenue to explore next. I have seen my primary doctor, a rheumatologist and 2 different neurologists. I have an appointment for a pain management doctor next week. Is it worth seeing a neurologist that specializes in MS.
Dave
I am male. My mother had MS since 2003. She since has passed from Pancreatic Cancer. I was diagnosed last year with Fibromyalgia. I experience Joint pain around the elbows and knees. My legs easily fall asleep and go numb. I have IBS, mild gastritis, and muscle twitches. Sometimes I get stabbing pains in my hands and feet. I get vibrations in my legs. Also have restless legs at night. It is miserable.
Ricky
Hi Dave. Any updates on your condition? Very similar to how I feel. I'm just dreading them telling me it's actually MS
At my wits end. No one to turn too!
Jill
A diagnosis of Fibromyalgia will not keep you from getting your disability if you are ever diagnosed with MS. I was actually diagnosed with both 6 months apart with MS being found first with a lumbar puncture. After 14 years of treatment for both my MS and Fibromyalgia among the vast issues I have. My doctors have found a moderate place where for now I can tolerate the pain, and have the medication I need to function. Some days are better than others. Receiving treatment for my Fibro helped take care of the pain that we couldn’t seem to get to the root of via the neurologist. Finding a unique pain clinic helped! Unfortunately I moved and have not been able to find the combo of OMTs, Massage and trigger shots to keep me moving. Massage has been key up until COVID-19.
Fiona
My father, a GP had to retire aged 60 because
of MS, my mother always suffered from what she called rheumatism, my younger sister has
psoriatic arthritis and I was told by my GP
that I had osteoporosis. Having done a lot of
reading I diagnose that my all-over joint pain and poor balance is fibromyalgia. Sitting at this laptop doesn't help!
Yolande
I have been diagnosed with Fibromyalgia about 4 years ago, have been suffering for a long time before that, no doctor knew what the problem was and said I had gland problems and arthritis etc. Ended up in hospital with the wrong medication many years ago. I went for an MRI recently and my neurologist said I have lesions consistent with an MS patient and my nerve conduction test also showed some delays but he said I have Fibromyalgia and might develop MS in a couple of years. Rheumatologist said I have Fibromyalgia and that I need to go see a psychologist to talk about it. It has never helped to talk about it - I tried LOL - How do I know what I have??? I have been feeling progressively worse over the last few years. I try to do exercise and eat healthy and stay active, but it is very difficult with balance, pain, swollen limbs, brain fog, insomnia, fatigue, numbness in feet, hands, face, electrical zaps, night sweats, digestive issues (insert symptom here). I recently had terrible hand pain/infection and could not move my hand and needed to go to the emergency room (no visible injury in area which they couldn't understand). Do I go and see my Dr. again to do the tests over after waiting a few years after the first lot? My GP says that it is all just symptomatic of the condition and treats every new symptom on its own but mindful that I have Fibromyalgia. I give up....
Margaret Mathews
Hi everyone! I haven't read all of your posts but many of them. I found your article Debi searching for a link between tremor, fibromyalgia and herpes zoster. I feel this is what I'm dealing with...Herpes zoster that has not gone back into dormancy. I feel everything began with severe itchy skin breakouts 25 years ago. Severe pain began 13 years ago which worsened slowly with periodic shingles breakouts over the past 18 years and sciatica off and on over the past 12 years. "Heavy legs" with very decreased overall strength as well. Brain fog (I feel herpes zoster is active in my brain as well as spinal cord and peripheral nerves)
Healing journey began 2 years ago with functional medicine and I'm slowly getting my strength and function back. Stool, urine and blood tests led to getting gut into balance from candida and bacterial overgrowths. Heavy metal reduction with a supplement is ongoing. The last thing I'm working on is the tremor and it seems to be responding well to program that is further strengthening the immune system with soil based probiotic and supplements GABA L-lysine and elderberry extract. There were many other supplements along the way getting the gut into better balance.
Have you ever considered MS to associated with a reactivated virus in the herpes family or another virus? My birth family seems to be dealing with Herpes 3 and 6 and my husband's birth family seems to be dealing with Herpes 3 and 4 as well as Strep B. I'm wondering if all of these neurological diagnoses are viral related and if we can improve the gut health and immune system we can reduce or eliminate the symptoms in the body which will improve the quality of our lives. At least that seems to be what is happening for me.
I'm fortunate that our insurance covers Functional Medicine at the Cleveland Clinic. We need to make this type of medicine available to all at an affordable price to those who want to explore another type of medicine for fibromyalgia, MS, SLE, psoriatric arthritis, RA etc...
Joy Berry
Hi I had fibromyalgia now for 20 years I think it is the same as ms I all so think u can get them at the same time iv had all the pain relief an I’m now on matrifen patches which have Morfean in then than thay r good iv tried everything else But cos iv got pain the doctor says I can’t have ms and he want test me
Sheila J Lewis
Hi, I was reading your post. Wondering if you've ever tried bellbucca which is a buccal film that goes inside your cheek and it's like a 12-hour time release thing. That is the only thing that I have found that's helped any of my pain
Anthony M.
I was diagnosed with fibromyalgia after my rheumatologist ruled everything else out that he could test for. He does suspect ankylosing spondylitis. He used the FM/A test which checks for specific cytokine levels. I also have celiac disease, symptoms of inflammatory bowel disease, which my gastroenterologist said could be MS, ADHD (brain fog), migraines, occasional optic neuritis flareups, dermatitis herpetiformis, degenerative disc disease, and vertebral fusion. I also have some early warning signs of Parkinson’s, and mostly triggered by side effects from medication I should never have been given in the first place. Unfortunately, my insurance has yet to approve the very expensive tests to check for multiple sclerosis. All my doctors are 99% convinced that I have it. In facts, my eye doctor, primary care doctor, rheumatologist, neurologist and dermatologist all agree that fibromyalgia is either the early stages of MS that may or may not progress further, or is highly linked to the strong possibility of somebody developing MS, Parkinson’s, or even Alzheimer’s. Which terrifies me the most. One of the most frustrating things is that the medications that help me most are low-dose Valium at bedtime, and dextroamphetamine during the day. I don’t abuse them, but I get attitude from many pharmacy techs. I decided to go off opioid pain medication, as they were simply causing hyperalgesia . However, having buprenorphine to take occasionally was very helpful. But for some reason, they want you on it every day. If you test negative at an appointment, you actually get in trouble. Even though my doctor knew that I was not selling it and was only taking it as needed, he had to follow the rules or he could lose his license to prescribe it. Technically it’s FDA approved for opioid dependence, but commonly used off label for pain management, and one of the only pain medication that is effective for people with fibromyalgia. There are a couple forms that are FDA approved for chronic pain, but they only come in brand-name formulas and are extremely expensive and not covered by my insurance. It took until I was in my mid-30s for doctors to even take me seriously and not refer me to psychiatrists. It was the psychiatric medication that caused the Parkinson’s symptoms. It is so frustrating that the medical system has created this, “pass the buck“ mentality. Instead of running tests and being thorough and finding physical causes, doctors are quick to tell people that things are all in their head. Until they realize that they are not. I was actually vindicated when they found physical causes for my problems, and guess what? I was no longer nearly as depressed. Nobody now tells me that I have “mental illness.“ That is such a horrible term that does no one any good. It’s literally telling people they have a sick mind . Sorry to vent, I’m just so frustrated with the medical system. I know that I need to get tested to find out if I have MS conclusively, but it seems like I’m always having to jump through so many hoops. I just changed insurances so I need to get a new primary care doctor basically just to refer me to my current neurologist. Luckily, I have Blue Cross Blue Shield and they don’t ever deny MRIs according to the agent I spoke with. My gluten sensitivity is increasingly worse. Even the tiniest cross-contamination gives me major flareups that causes mostly neurological symptoms as well as severe peripheral Edema and dermatitis herpetiformis. My mother passed away at the age of 69. She had a very mild mutation of myotonic dystrophy type one, which caused doctors to stop looking for anything else. Right before she died, they started saying that her symptoms were far too severe for such a mild mutation and that she could have MS, or Parkinson’s. But she died before they could test her. They also suspected celiac disease given that she had multiple miscarriages. I had chickenpox, severe strep, and Epstein bar as a kid and it seems to be a recipe for multiple sclerosis
Amy
I started down a rabbit hole this morning when I stumbled across an ad for a quiz to see if you had pba. I did not take the quiz, I started doing research. It was the "uncontrollable crying/laughing" portion of the ad that grabbed my attention. When fibromyalgia wasn't listed as one of the neurological conditions underlying pba, Ms was and having lost my husband to complications of cp/rr ms, I've long suspected, as it appears most of us do, that the two are at the very least opposite ends of the spectrum of the same disease. I began seeking my diagnosis in 1999 and did not go through the years of ruling out everything else as I had a friend with fibro and Ms who told me my symptoms sounded like fibro and I should go to my doctor. So we went through the tests rather quickly. I believe I had my first attack when I was just in Jr high. I remember being out of school for a month with the flu. I remember I couldn't wake up, except for when the pain was so bad I couldn't sleep. My aunt had what we believe was a fibro attack in the late 80s early 90s. My mom has fibro and Ms. My symptoms have been getting worse the last couple years. I always attributed the emotional craziness to the depression, anxiety, and being a left handed Capricorn. I am an emotional person whose brain does not shut off and does not use its powers for good. It goes off on something, swings by and grabs my emotions and insecurities, and off they go on an unauthorized vacation without my consent. I do take pride in the fact that I have learned to tell when it might be on a valid thought path and when it's just running amok (most of the time). But the constant crying over nothing....I can't handle it. And my support people have a hard time with it too. What do you all think? Is this worth a path going down with the medical community?
Thanks, amy
Katie Enns
My Maternal Grandpa and my mother both have MS. I'm not sure about my Grandfather (from what I understand MRI wasn't invented yet) but My mother tested positive in spinal tap not MRI. I'm scheduled for (ANOTHER) MRI. My question is If my mother tested positive through spinal tap Not MRI should I skip this MRI and Just ask for the (horrific) spinal tap to confirm. I'm getting worst everyday!! I need answers and help!!
Susan Hopewell
I was diagnosed with fibromyalgia back in the 90's by a rheumatologist did the 18 points test. Then in 2013 I was diagnosed with MS, actually would have been in 2004 but the neurologist that ordered an MRI left the country on the morning of my appointment to get results. I was an RN and on the morning my husband had outpatient surgery, I had foot drop when they called me back before he went in the OR. So my internist said could be a pinched cervical nerve and ordered the MRI. I knew when during the mri, the tech came back and said doc was more with contrast. By this time, I had numerous lesions in brain and all of my spinal cord. then because I had been treated for lyme disease, infectious disease wanted spinal tap. I actually had 2 spinals because they didn't have enough for him. So i definitely have MS. My neuro told me that he thinks fibro is actually preMS.
Rick
Hi. I was tested MRi about 8 years ago for MS but it was inconclusive, so I was said to have ME. 8 years on and up and down over the 8 years I've now deteriorated with more pain, electric shock sensations a lot in my chest, and also burning feet, mainly in the evenings. So now they are going down the route of fibromyalgia, it's driving me mad now. I've always been hard working and saved a little, but over the last 4 months of not working my my is going down fast. What can I do about my health and a diagnosis, it feels like I'm left in limbo!! I have been referred to rheumatology but have been told there is a 53 week wait!!! Do you think the burning hands and feet could be more neurological? Apologies for a bit of a waffle, but feeling so lost and alone. Friends don't get the pain I'm in family don't understand my fatigue. Any information greatly appreciated. Rick 52.