Interesting article: Autoimmunity and Neuroinflammation in Fibromyalgia

[johnsalmon]

Have you tried seeing all your fibromyalgia symptoms as actually thyroid? That's the opinion of quite a few people on thyroid forums,

fibromyalgia is not related to thyroid bu some symptoms of fibramyalgia are shared by Hastimoto's but they are not related Hastimoto's affects a lot of the body but pain is not a symptom of Hastimoto's they are both uncurable but able to be managed. in fact my fibromyalgia is more manageable then my Hastimoto's

 

[JayCS]

fibromyalgia is not related to thyroid bu some symptoms of fibramyalgia are shared by Hastimoto's but they are not related Hastimoto's affects a lot of the body but pain is not a symptom of Hastimoto's they are both uncurable but able to be managed. in fact my fibromyalgia is more manageable then my Hastimoto's

Hmm - so which symptoms or bloods then are making your fibro seem a bit autoimmune?

 

[Auriel]

inklings of hypothyroidism/Hashimoto,

Are you hypothyroid jaycs? (I have that) they keep telling me that even though its autoimmune, it's not hashimotos (which is very confusing cos every time I've boogled it in the past, the name hashimotos comes up)

 

[JayCS]

Are you hypothyroid jaycs? (I have that) they keep telling me that even though its autoimmune, it's not hashimotos (which is very confusing cos every time I've boogled it in the past, the name hashimotos comes up)

Ah, only a slight suspicion ghosting around , nothing to focus on .

I've never got that perfectly sorted , so let's have a look:

• Adult hypothyroidism = underactive thyroid is 90% autoimmune,
• the other reasons we'd likely know (= surgery, radiation, infection, a further autoimmune cause, meds like lithium).
• however if it's autoimmune it's "mostly" / very likely Hashimoto's.

So if they say yours is autoimmune, but really actively saying it's not Hashimoto's,
either it's a different autoimmune disease causing the underactivity, which you would know,
or they can only mean they can't be 100% sure it's Hashimoto's, maybe cos the label might seem scary for some?

In my first pointer they also didn't mention Hashimoto's.
When I had the same web experience as you, I asked my GP, who regularly educates himself on thyroid, if that would mean Hashimoto's, and he said: yes.
However a referral to an endocrinologist professor lead to him definitely naying that I have it. (Whether he thinks autoimmune usually means Hashimoto's or not he didn't say.)


Bottom line is hypothyroidism is usually Hashimoto's and if there is any reason not to be sure, other forms should praps be checked / excluded, but it may not matter much either way. Ann Amy Myers MD says she believes it's reversible even if autoimmune.

 

[Auriel]

Thanks Jay I'll look Ann Myers up I've asked different drs/specialist a few times if it is that, they've all said no, that's why I've been confused about) interesting info, will look up

 

[JayCS]

Ann Myers

Amy, she's called, sorry... . Functional doc, author and had thyroid autoimmunity herself....

 

[Auriel]

Ahh, Thankyou

 

[fibrofoggirl]

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.

Hi, I finally got into a new rheumatologist in Dec (haven't been to one since being dx yrs ago)
but pain is worse so needed help
left with 4 diagnosis! I qualify for medical marijuana so going to try that for pain
I've been using salon pas on my fingers & icy hot max with lidocaine for back, hips, & where ever else pain arises

I don't understand why a rheumatologist won't see you! it was a rheumatologist that diagnosed me years ago

 

[cookiebaker]

Amy Myers MD says she believes it's reversible even if autoimmune.

not sure i trust someone that is pushing a product line. books are one thing, but a whole product line? sorry - but that just says "looking for money" to me.
maybe the products are fine, maybe they arent - i personally have no intention of finding out.
There are plenty of products already on the market, many of them of very good quality.

Another strike (in my book) is her being featured on Goop (a seriously overpriced outlet for some really "out there" stuff, owned & operated by Gwenyth Paltrow, the actress) sorry, but this does not inspire confidence in the least.

 

[johnsalmon]

have to agree with you there cookiebaker there is a similuar "Dr" on the hastimoto forum that sells her products and books she also believes some of her products cure hastimoto's There are some good books on both - currently reading Mayo Clinic guide to Fibromyalgia ( a fairly hefty book) and for Hastimoto's there is "what you musdt know about Hashimoto's disease" by Brittany Henderson MD - these book do not try to sell or even suggest products etc There are just practical guides to the diseases.

 

[JayCS]

I definitely agree with all these strikes, cookiebaker and johnsalmon.
I didn't mean it as a recommendation, that's why I wrote "believes".
And as said I don't think thyroid is fibro either, like some do, nor that fibro is autoimmune, like some do.
But if we have thyroid it's good to treat that separately. And fibro may have autoimmune aspects, but I don't think that's a good lead to causes, but occasionally such sidelines can point us to a treatment that'll help us.

 

[cookiebaker]

yes, it is quite true that fibro & hypothyroid have VERY similar symptoms - and I said for years that I thought I was hypo, or heading in that direction, and had all of the classic symptoms of hypo except for a goiter.... but because my TSH was always within the "normal" range, albeit towards the upper end of the range (and creeping higher each time it was checked), they basically told me i was full of it, there was nothing wrong with my thyroid and refused to even consider treating me for that - instead, i was given anti-depressant/anxiety meds (that i did not need)

Then came the fibro dx last July - which, yeah, i probably do have fibro, in addition to being hypo - but to be fair, until i can get the hypo sorted, how do I really know for sure? And by sorted, i mean getting back to an optimal, for me, situation with the thyroid.

Only this past September did my TSH finally rise above the top of this clinics "normal" range but i had to wait and take another test in 6 weeks to see if it stayed high.. that test came back higher yet - only then was my primary willing to start any kind of treatment - at the lowest possible dose, and testing again in 8 weeks to see where things are. Trying to get her to agree to check my free T's is like pulling hens teeth.. (despite both being at the low end of "normal" on the rare occasion they have been checked)

Also to be considered are low vitamin D levels, low iron levels, and possibly other nutrients as well - my B12 was towards the low end of the range the last time it was checked (Sept 2021)

So yeah... i have a lot of issues that I am trying to get sorted out, but I feel like I am in an uphill battle with my primary on this stuff...

 

[JayCS]

like pulling hens teeth.. (despite both being at the low end of "normal" on the rare occasion they have been checked)

That confused me for a second - not being familiar with it, and wondering how many teeth hens have on the upper end.

I feel like I am in an uphill battle with my primary on this stuff...

But it sounds as if you're a sturdy fighter with better weapons...

 

[cookiebaker]

That confused me for a second - not being familiar with it, and wondering how many teeth hens on the upper end.

But it sounds as if you're a sturdy fighter with better weapons...

LOL, sorry for the confusion on that one, Jay - the "pulling hen's teeth" is a fairly common analogy in the midwestern US states - and means something is pretty much impossible (since hens dont actually have teeth)

I am still going round with my primary, via proxy (her assistant) to get the requested tests done - she seems to think they are not useful or helpful, despite current research, and patient experience, saying otherwise.

I really do think it is time to fire this primary, and that clinic in general, due to the ongoing problems getting appointments (weeks, if not months out), getting quality care (having appropriate lab work is just a small part of that), and just generally not having my concerns heard and/or blown off. I am tired of it. I am sick and tired of feeling sick and tired, and far older than my chronological age.

 

[JayCS]

I really do think it is time to fire this primary, and that clinic in general

OK now in that context it definitely sounds as if they're doing f-all for you, so if you have any choice...
go for it! - step aside and let them tumble down the hill into the deep blue sea.
(I seem to have gotten inspired by all your imagery... )