Interesting article: Autoimmunity and Neuroinflammation in Fibromyalgia

[Jemima]

There's an interesting new article about fibromyalgia on the Very Well Health website, titled Autoimmunity and Neuroinflammation in Fibromyalgia. It explores the recent research indicating FM as autoimmune, and draws that together with some of the other developments in fibromyalgia research in a way that I haven't encountered elsewhere. Have a Google if so inclined - I'd say it's worth a read for those of you who like diving into the details!

 

[BombayMum]

Yes, FM is an auto immune disorder. I can confirm as was told so 5 years back by one orthopaedic who suspected some form of autoimmune disease and atleast 2 rheumat specialist doctors, one of whom diagnosed me with FM and the second one was looking into the similar line of other autoimmune diseases such as SLE. All treatment I received was line of treatment for auto-immune disease.

 

[sunkacola]

Yes, FM is an auto immune disorder. I can confirm as was told so 5 years back by one orthopaedic who suspected some form of autoimmune disease and atleast 2 rheumat specialist doctors, one of whom diagnosed me with FM and the second one was looking into the similar line of other autoimmune diseases such as SLE. All treatment I received was line of treatment for auto-immune disease.

There has not yet been any conclusive or scientific proof that Fibromyalgia is an auto immune disorder. This is a fact.

Two or three doctors telling you that doesn't make it true. Doctors do not always know what they are talking about when it comes to fibromyalgia, and hand out bad advice, do tests that are no longer used because they are worthless for diagnosing, and make all kinds of claims, for instance saying it is actually a psychiatric disorder. In fact, I bet you could find a doctor who would say that it is any number of things. But that doesn't make it true.

We are all taught to believe what our doctors say, but experience of those who have dealt with a chronic condition that is very poorly understood shows us that, while doctors are very good at some things, they do not know everything. So far, NO one knows for sure how to classify fibromyalgia, and no one has proven that is is this or that thing. This is probably because fibromyalgia is an umbrella diagnosis, covering probably over a hundred different symptoms seen in various combinations in different people, and yet no one specific cause they know how to test for is shown to be the cause.

The article that Jemima refers to suggests that it might be an auto immune disorder. But this has not yet been proven and the article doesn't claim it is. Until it is proven with serious and meticulous medical and scientific studies, and published in a peer-reviewed substantial scientific publication, it is not proven. And so far that hasn't happened. I think it is important to remember this.

 

[JayCS]

Yes, FM is an auto immune disorder. I can confirm as was told so 5 years back by one orthopaedic who suspected some form of autoimmune disease and atleast 2 rheumat specialist doctors, one of whom diagnosed me with FM and the second one was looking into the similar line of other autoimmune diseases such as SLE. All treatment I received was line of treatment for auto-immune disease.

Hi BombayMum, thanks a lot for pointing me to this old post of @Jemima's that seems to have slipped past me, it does actually have a few interesting details, altho as @sunkacola's said - there is no proof of FM being autoimmune, the studies only show hunches resulting in some pointers and any docs saying this are using a crystal ball.

But the article has pointed me to small details I'd never been able to take in before, like this one which I even thought was wrong:
Low serotonin might be caused by autoantibodies to serotonin, which can be called "Antiserotonin (antibody)". (GABA increases serotonin & helps me, so my serotonin is low (common in fibromyalgia).)
However even this were proven, it wouldn't be on a level of causes of fibromyalgia, but only of biomarkers (association isn't causation) - and nowhere near solid treatments.

Spoiler: (click for more details)

Now again, the evidence for the antiserotonin-connection isn't particularly high and also very old (1992 & 1995 by one group, 2001 by another). For instance an article from 2008 summing this up, authored amongst others by "one of our experts" Daniel Clauw, said it's praps even less clear than the tender points, which they at that time were still defending a bit. They reviewed evidence for 15 sets of biomarkers and came to the conclusion: "Of the objective tests, those that hold the most promise as biomarkers are probably tests that directly assess elements of neural function, such as functional neuroimaging, ERPs, and DNIC."
"Antiserotonin antibody noted to be increased in three cross-sectional studies by two different groups.
Stringent controls necessary prior to determining utility. Longitudinal studies needed."
Not sure if that's interesting for @miamisunset - it says "Autonomic reactivity: Lower heart rate variability noted in three cross-sectional studies by two different groups. May predispose to condition. Longitudinal studies needed"
That study is called "Biology and therapy of fibromyalgia. Evidence-based biomarkers for fibromyalgia syndrome" (2008).

The second highest autoantibodies ("71%") next to the ones for serotonin ("73%") are gangliosides: "Gangliosides may be an important aspect of FM autoimmunity. They’re believed to be involved in small-fiber neuropathy."

A more recent article (2019) quoting this and quoted by verywellhealth is: Neuroimmunology: What Role for Autoimmunity, Neuroinflammation, and Small Fiber Neuropathy in Fibromyalgia, Chronic Fatigue Syndrome, and Adverse Events after Human Papillomavirus Vaccination?

What confuses any clear conclusions for me is that antiserotonin antibodies might reduce the serotonin released by mast cells, or more generally serotonin can be high in mast cell disorders, of which I have MCAS.

 

[kap]

In my experience neither specialty will actually "claim" FM as within their specialty. I could not find a rheumatologist that would see me because it's not in their specialty and my neurologist said flat out it falls squarely within the rheumatology realm. So I gave up hoping for anyone, aside from my family practice doc, who will help me.

 

[cookiebaker]

In my experience neither specialty will actually "claim" FM as within their specialty. I could not find a rheumatologist that would see me because it's not in their specialty and my neurologist said flat out it falls squarely within the rheumatology realm. So I gave up hoping for anyone, aside from my family practice doc, who will help me.

yeah, it really varies across the country on who handles it.. my clinic seems to be physical medicine & pain management combined.. Physical Med made the actual diagnosis, Pain Mgmt handles the meds side of things.. not that many do much good..

If your GP/PCP is willing to help you work on things, then by all means, go with it.
My PCP is more of a "dont want to step on anyone else's toes" kind - at least as far as prescribing anything pain related goes (ER had rx-ed some muscle relaxers (20 tablets) a couple weeks ago due to some major pain issues related to my neck arthritis - could really do with a refill on that, at least until we figure out what to do with the neck issues, but she did not want to do that - said talk to Phys Med about it at my next appt with them - the 14th - I have 4 pills left to last 2 weeks)..

 

[JayCS]

neither specialty will actually "claim" FM as within their specialty

Yep - some docs "claim" FM, by specializing in it, regardless of their specialty.
So if these kind of conditions now get diagnosed more, one could think that a new specialty might develop for them.
But it'd really need to be treated in a multi-modal way, specialists of all kinds needing to work together.
So praps it's back to the GP/PCP networking together with specialists for exclusion vs. co-morbidities and above all getting educated better on it -
After all our mental, physical, dietary, environmental and med/supp treatments coincide with many conditions.

varies across the country on who handles it

Yep - varies across the countries....

 

[longtimer]

I just read the article and its fascinating - so thank you Jemima - you always post interesting things. I need to reread it again (and again) to absorb it all. I think it makes a lot of sense with my FM and my personal experiences. The study was just in 2021 so that's pretty new and important. I hope there will be more research into this aspect of the condition.

 

[johnsalmon]

there is some thoughts thatFibromyalgia is an autoummune disorder but there is no research that proves it. I believe that it is an auto immune disorder based on my medical situation and my doctor thinks that way also buit as I said there is no proof yet that it is an auto immune disease.

 

[sunkacola]

@longtimer and @johnsalmon , just to let you know, Jemima has not been to the forum since April of last year.
It might be best if you start a new thread to discuss the article or auto immune disorder topics. Not required, of course, but a suggestion.

 

[JayCS]

I believe that it is an auto immune disorder based on my medical situation and my doctor thinks that way also buit as I said there is no proof yet that it is an auto immune disease.

Hi John - is there anything that makes you & your doc think that your type of fibro is not added to by an autoimmune disease or is itself one?
I have very slight autoimmune bloods, like often slightly elevated IgG4, sometimes inklings of hypothyroidism/Hashimoto, but nothing that'd explain the severity of my fibro.
My other major symptoms, and the increased fatigues is MCAS, which is immune, rather than autoimmune.
Is MCAS or generally immune system problems something you've considered?

 

[cookiebaker]

sometimes inklings of hypothyroidism/Hashimoto

curious what you mean by "inklings of hypo.."

I have suffered with hypo symptoms for years now and have always been told there is nothing wrong with my thyroid - despite having every one of the classic hypothyroid symptoms, except goiter. Only last September did the so called "gold standard" test (TSH only) show a problem..
and even then, i had to wait 6 weeks to have another test (which was even higher than the Sept one) before they would even consider treatment.. and that treatment currently consists of the lowest possible dose of levothyroxine available (started in late Nov) and 8 weeks on that before we test again to see where things are at (next lab is the 17th)

I know Europe does things a bit differently than in the US, so curious what testing was done, and how one came to the "inklings" conclusion?

 

[johnsalmon]

Hi John - is there anything that makes you & your doc think that your type of fibro is not added to by an autoimmune disease or is itself one?
I have very slight autoimmune bloods, like often slightly elevated IgG4, sometimes inklings of hypothyroidism/Hashimoto, but nothing that'd explain the severity of my fibro.
My other major symptoms, and the increased fatigues is MCAS, which is immune, rather than autoimmune.
Is MCAS or generally immune system problems something you've considered?

I suffer from Hastimoto disease - an auto imune disease and once you have one there is a high probability that you end up with more and I have Chrons disease and Alopecia then came Fibromyalgia - as I stated there is currently no hard and fast research to show that it is an auto imune diease but it has all the effects of one. I am off to the rheumatologist in the next month with the advice from the neurologist that he is leaning towards ALS which is believed to be an autoimune disease also. (hopefully he is wrong and I just have fibromyalgia)

 

[JayCS]

curious what testing was done, and how one came to the "inklings" conclusion?

Well, the thyroid bloods are only occasionally and slightly wonky, the thyroid scans are perfect and I have no typical constellation of symptoms, only fatigue and muscle pain, which can well be explained differently.
No weight gain, no joint pain (stiffness is the muscles), definitely no constipation, no hair problems, no depression, no anxiety, normal heart rate. My face goes pale from overdoing it, not puffy, and my warm / cold problems are well under control.
A centre for rare diseases pointed me to hypo, my GP was checking it, to be sure I went to a thyroid expert, who said absolutely no, and my cardio is also continuing to check, the bloods are now consistently normal.
So I think/hope my GP is right, that we just have to keep the slight tendencies under observation.

Also, I supplement typical thyroid supps anyway, for other reasons: D3 high dose, now again Selenium, cos it's gone down, and 4g/d L-carnitine (my iron and zinc are high), so whether I have it or not loses importance...

 

[JayCS]

I suffer from Hastimoto disease - an auto imune disease and once you have one there is a high probability that you end up with more and I have Chrons disease and Alopecia then came Fibromyalgia - as I stated there is currently no hard and fast research to show that it is an auto imune diease but it has all the effects of one. I am off to the rheumatologist in the next month with the advice from the neurologist that he is leaning towards ALS which is believed to be an autoimune disease also. (hopefully he is wrong and I just have fibromyalgia)

Ah, so if you definitely have Hashimoto's, why would fibromyalgia also "need" to be autoimmune?
Have you tried seeing all your fibromyalgia symptoms as actually thyroid? That's the opinion of quite a few people on thyroid forums, like a big UK one, much to the dislike of a big UK fibro forum, because one size does not fit all.

But I'd definitely get ALS checked, I had that and quite a few others done early on, by spinal tap. I never got a detailed report on that from my sleep lab psychiatrist, who did it... I should ask at least for a list of things that were excluded....