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Fri Jul 2, 2021, 12:12 AM

Fibromyalgia Could Actually Be an Autoimmune Disorder, Mouse Study Suggests

Fibromyalgia syndrome (FMS) is one of the most common chronic pain conditions out there, yet we still know shockingly little about it.

For decades, the debilitating condition - marked by widespread pain and fatigue - has been vastly understudied, and while it's commonly thought to originate in the brain, no one really knows how fibromyalgia starts or what can be done to treat it. Some physicians maintain it doesn't even exist, and many patients report feeling gaslit by the medical community.

New research on mice has now found further evidence that fibromyalgia is not only real, but may involve an autoimmune response as a driver for the illness.

https://www.sciencealert.com/mouse-study-suggests-fibromyalgia-really-is-an-autoimmune-disorder

This is great news, now they need to find a marker for it. Once they can assign numbers in a lab test to something, they finally admit it's real and start looking for treatment.

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Reply Fibromyalgia Could Actually Be an Autoimmune Disorder, Mouse Study Suggests (Original post)
Warpy Jul 2021 OP
MFM008 Jul 2021 #1
NH Ethylene Jul 2021 #2
wnylib Jul 2021 #6
NH Ethylene Jul 2021 #9
wnylib Jul 2021 #11
NH Ethylene Jul 2021 #13
wnylib Jul 2021 #14
yellowdogintexas Jul 2021 #3
pnwmom Jul 2021 #4
Duppers Jul 2021 #5
NH Ethylene Jul 2021 #10
LiberalLoner Jul 2021 #7
Warpy Jul 2021 #12
mopinko Jul 2021 #8

Response to Warpy (Original post)

Fri Jul 2, 2021, 12:37 AM

1. I have it

And i have positive blood testing for autoimmune disorder.

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Response to Warpy (Original post)

Fri Jul 2, 2021, 12:37 AM

2. This is very good news.

This is such a debilitating illness. My husband is unable to live a normal life because of it.

It seems to correlate with past or current viral infections (such as Epstein Barr), so could possibly be the body's response going awry. It would be great to finally get an answer, and possibly a treatment.

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Response to NH Ethylene (Reply #2)

Fri Jul 2, 2021, 03:37 AM

6. Sounds similar to polymyalgia rheumatica,

which is a muscle inflammation that follows viral infections like flu or bronchitis, and is believed caused by a virus. It occurs only in people 60 and over, most often in women. It is painful and debilitating, but treatable with prednisone. I developed it after getting viral bronchitis 4 times in one winter. Prednisone treatment usually lasts 9 months to a year, gradually reducing the dosage, but it took 2 years for me because it was so long before it was correctly diagnosed. Without treatment, it gets progressively worse. It doesn't go away completely, but goes into remission. My PA had misdiagnosed it as arthritis for a long time. After remission, excessive muscle use can trigger soreness (different from ordinary muscle strain) for a day or more, and relapses can occur, although, thankfully, that has not happened with me.

A friend of mine has fibromyalgia and also gets relief from Prednisone, but her doctor will not give her a prescription for it for more than a week or two, to avoid dependence on it he told her. She told me that he believes that it is psychosomatic.

Both of us have multiple allergies, which is common in people who have autoimmune disorders. If it is proven to be an autoimmune disorder, maybe a protocol for Prednisone or another med might be developed.

I have suspected that long covid is related, with its chronic pain following viral infection. I wonder if there is a correlation between long covid and people with allergies.

Viruses can be such nasty things, worse than "just" the flu.


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Response to wnylib (Reply #6)

Fri Jul 2, 2021, 10:32 AM

9. I'm not surprised it took so long to diagnose.

These ailments are so hard to validate without specific lab or radiology evidence. What's more, it's so easy for PCPs to substitute 'all in your head' for 'I don't know what it is,' especially with women.

I am going to pursue the idea of treating it as an autoimmune disorder. Anything to bring some relief to my husband, who rarely has a 'good' day anymore.

Viruses sure do have an evolutionary 'genius'. It has been fascinating - and dismaying - to watch Covid-19 evolve in real time.

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Response to NH Ethylene (Reply #9)

Fri Jul 2, 2021, 11:09 AM

11. The disorder that I had was

polymyalgia rheumatica (pmr). My friend has fibromyalgia. They are different disorders completely. Her diagnosis was fairly quick for fibromyalgia, but her doctor's "diagnosis" is psychosomatic fibromyalgia. He is among the doctors who do not believe that it is a real, physical disorder.

My polymyalgia rheumatica has some specific traits to aid in diagnosis, which the PA missed, so I fault the PA for misdiagnosing it. She immediately thought "arthritis" and stuck with that. She ordered X-rays which showed very mild arthritis in one hip. My pain was much stronger than "mild" and extended far beyond that hip. It was also chronic, every minute of every day and not flare ups. I think she believed that I was exaggerating the pain. She suggested that I relax more, think positive thoughts, and take Tylenol.

Tylenol does not work on pmr. Only Prednisone does. I was unable to climb any stairs. Just going up a curb when crossing a street was agony. Standing from a sitting position was so painful that I delayed it as long as possible and cried just knowing that I had to stand up. I could barely dress myself. I woke up every morning with burning pain in my shoulders, hips, and knees. I lost some range of motion in my arms.

That PA left the medical practice. The new PA dignosed it correctly in 2 minutes the first time I told her about my limited arm movement. The inability to raise both arms above chest height is a classic, defining symptom of polymyalgia rheumatica. There is no specific diagnostic lab test for pmr, but corroborating evidence was in my chart, which the new PA took the trouble to read - my age at the time (65), being female, recent repetitive bouts of viral infection, and northern European descent. She did order blood labs. I don't recall the name of the specific one that she said convinced her that it was pmr, but she said it indicated muscle inflammation. She gave me a script for Prednisone and within a few short hours after taking the first pill, it felt like a miracle had occurred. No pain. I could walk, sit, stand, move my arms.

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Response to wnylib (Reply #11)

Fri Jul 2, 2021, 01:09 PM

13. That sounds like it was horrific!

I can't imagine having that level of intense, daily pain and being told to "relax more, think positive thoughts, and take Tylenol." What a tremendous relief it must have been for it to ease up with the prednisone.

I didn't get confused between you and your friend; my thoughts just meandered a bit.

Regarding your friend, there is no excuse for her PCP to dismiss fibromyalgia as psychosomatic, especially considering it is one of the diseases for which one is qualified to seek SS Disability.

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Response to NH Ethylene (Reply #13)

Fri Jul 2, 2021, 01:19 PM

14. She has SS disability. I think it was

first diagnosed by a different doctor but her current one does not take it seriously. Some doctors just won't accept anything as valid that does not show up on an xray, lab test, or MRI.

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Response to Warpy (Original post)

Fri Jul 2, 2021, 02:16 AM

3. I have it too, but I do not flare up as much as others do

Medication has really helped, but I have days when I can feel the ache and pain move up through my thigh muscles; the last time it woke me up.

Learning that it may be an autoimmune disorder is real progress!

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Response to Warpy (Original post)

Fri Jul 2, 2021, 02:41 AM

4. Makes complete sense to me. Mine disappeared as soon as they discovered what was giving me

all my GI symptoms -- gluten -- and I went on a strict gluten-free diet.

Within a month, more than a decade of fibromyalgia disappeared along with the GI symptoms. No need for medications.

They know that Celiac and gluten-sensitivity are connected with a higher risk for a number of auto-immune diseases, and I've always thought fibromyalgia was one of them. It was like my whole body was fighting gluten.

So that was my problem, but I suspect that different people have different causes for their fibromyalgia, so the solution may be more complicated than finding a marker.

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Response to Warpy (Original post)

Fri Jul 2, 2021, 02:47 AM

5. I was diagnosed with CFIDS

At Medical College of Virginia in the 1981.

Chronic Fatigue and Immune Dysfunction. Another name for ME/CFS.

From the article...

"Andersson hopes to bolster his research by conducting similar mouse studies using antibodies from those with long COVID or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). These are two chronic conditions that have many overlapping symptoms with fibromyalgia and have recently been connected to autoimmune issues as well."


In some people a virus can trigger a long-term, often decades long response.

For decades I had a very low-grade fever, crushing fatigue, night sweats, & brain fog. Only in the last 15yrs have I felt better.

Thanks for posting this.

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Response to Duppers (Reply #5)

Fri Jul 2, 2021, 10:40 AM

10. It will be interesting to see if these are all facets of the same etiology.

Recently I have wondered if the diagnosis of fibromyalgia or chronic fatigue depends on the specialty or interests of the physician you are seeing.

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Response to Warpy (Original post)

Fri Jul 2, 2021, 06:31 AM

7. I've often wondered if there isn't some connection between MS and fibromyalgia.

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Response to LiberalLoner (Reply #7)

Fri Jul 2, 2021, 12:09 PM

12. They're likely both autoimmune

They just haven't found the marker for fibromyalgia.

I think it might be closer to the extremely rare (so far) "Stiff Person Syndrome," a disorder characterized by antibodies to GABA, a neurotransmitter vital to muscle function. Or I might be wrong but it's a place to start.

https://rarediseases.info.nih.gov/diseases/5023/stiff-person-syndrome

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Response to Warpy (Original post)

Fri Jul 2, 2021, 07:47 AM

8. i have a dx of 'mixed autoimmune' disease.

docs dont seem to care what's in that mix. it doesnt look like it's gonna kill me.
lyrica was a godsend. mmj works better, tho.

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