Diagnosis on top of diagnosis/Coping questions

[johnsalmon]

Do you mind me asking what medication you are on?

my doctor tried several which did not stop the pain now she has me on Lyrica which stops the extreme pain but I still get flare ups. I have no side effects from the Lyrica

 

[JayCS]

fibromyalgia does not actually cause damage to the muscles - ALS does . This is hard to understand this when you have extreme pain in the arm muscle. But a number of medical conditions produce "referred" pain

Yes, definitely true in that comparison. My muscles are still in perfect shape. I can always do 20(-30) quick pushups and when using T4 recently, the other day for the first time since fibro I could even manage 2 pull-ups in a row. However why the focus on muscle tissue? My hunch is the injury is on something like a cellular level that is as yet not measurable - associated with chemical imbalances not just in the brain, but all nerves, the muscles, the gut, the mast cells, the whole body.

there are many suggestions on the cause for fibromyalgia from lack of rem sleep , diet etc which all basically come down to a chemical imbalance in the brain that in theory effects the central pain system -

I wouldn't ever have counted these as separate causes, they are triggers, and like you say they would be a part of other hypotheses, like the CSS one.
What I'm referring to as cause hypotheses are 2) autoimmune (e.g. Goebel et al. 2021), 3) SFN, 4) AV-shunt, 5, neuroendocrine, 6) mitochondria, 7) underlying issues, praps varying (chronification of pain, sleep disorder (like you say), low GABA, other diseases like SPD, MCAS (mast cells), 8) genes,
which I've listed here along with a load of biomarkers, which no one would claim to be a cause, just sign / association.
What do you think about these hypotheses?
I can see sleep & diet associated with chemical imbalance, but not necessarily (just) the CNS. It can just as well substantiate the other cause hypotheses or something completely different.
I can fully agree with a chemical imbalances perhaps being a crucial part of fibro though - that would also fit to my symptoms, as opposed to central sensitization, at least. These are all actually associations, no proven causation visible.
I have greatly improved local pains and sleep, but that doesn't improve my energy or Ache = my fibro.
If I push thru the Ache my wife sees my body deteriorating.
The flu doesn't injure our muscles or nerves either, but that doesn't make it necessary to invent a new pain type. Just flu inflammation is measurable, what's behind this hasn't yet been found, doesn't mean there is nothing tho.

this is where most of the research is looking at currently and at least to me it fairly logical I have no muscle loss no

In the yearly Italian summaries "Fibromyalgia - one year in research" the studies they described 2022 regarding pain neurophysiology were not in the context of causes, but of associations (like obesity, glucose interolance and CVD). (Liu, Sandström, Ellingsen, Lee, Müller and Raffaeli)

true stress etc can increase the pain but then stress upsets the chemical balance in the brain thus could upset the central nervous system - stress also increases my essential tremor but stress does not cause it. Diet can upset the chemical balance in the brain but diet does not cause either conditions .

I agree, stress and diet may be triggers for some. (They don't seem to be for me.)
Chemical imbalance: I agree all the way. CNS / CSS? Can't see even partially conclusive evidence.

There is a lot of good research being done on fibromyalgia at present - these may come up with a cure or better

Well the 900 pubmed articles every year show that researchers are interested. But it's hardly getting anywhere. In the last 3-4 years, the "autoimmune" study in 2021 was the only one managing to show something 'bigger'. However it was only small, and mainly mice. There's still too many basics missing.

 

[johnsalmon]

it can be hard to believe that pain has no associated damage or injury however the best example of it is the amputation of a limb - one can still feel pain in the missing limb. A good example of how the brain can run amuck is essential tremor - essential tremor is tremor caused by apposing gravity (unlike Parkingson's) ie if I hold my hand out it starts to tremor there is nothing physically wrong with the muscle the tremor can happen on any muscle that apposes gravity like fibromyalgia stress can make it worse - so brain chemicals have some part to play.

In essential tremor the removal of a very small part of the brain (by burning with a MRI mind yopu at a cost of $15k) instantly cures the tremors on the side of the brain treated. But the cause would have been brain chemical imbalance which I am more leaning to for fibromyalgia ie you stress and the brain chemical balance goes out of whack which affects the CNS and you get pain.

But there is a bit more at play - if I reach for something I get pain - I am not overreaching and putting the muscle under stress just a simple reach causes the pain. As the muscle is not under stress to the extent that a signal has to be sent from the muscle to the brain to generate a pain signal to stop me over reaching then some thing else is at play - the brain will know that my arm is extended and for some reason it considers that the muscle is in danger and so must send a pain signal to get me to retract my arm - one would assume that the brain chemicals are not in balance and thus make the CNS react wrongly.

We are not talking about over the counter chemical supplements but chemicals such as Serotonin, Dopamine Norepinephrine Acetylcholine GABA (gamma-aminobutyric acid) and Glutamate the chemicals that are associated with neurotransmitters

Most of the research in this area is been done in the Mental Health field however there is some recognition of brain chemical imbalance in that doctors do prescribe anti depressants for fibromyalgia.

I used to think Fibromyalgia was an autoimmune disease I don't think it is. It does not act like one

 

[Amesalot]

Thank you. Always good to know what others are taking or doing to help

 

[Amesalot]

This thank is to johnsalmon. I’m still getting used to posting on here

 

[Amesalot]

I don't need much help actually, because others make things worse.

You don’t need help cleaning your house? Or doing laundry at times? Or running errands? For me, even sweeping and mopping my studio floor can throw me into a fibro flare for days. And driving can even hurt sometimes. I live alone so I don’t need help getting up or buying things. Luckily I can order things online. It’s the physical things that burden me now and it’s incredibly frustrating at times because I used to be very active. I try my best to stay grateful for what I have, but of course physical inability still gets to me at times. And I’m still pretty new at asking for help so it still feels foreign to me. I know I have to make peace with it for it to feel like a more comfortable place. I’m happy for you that you’re so independent and your fibro seems to let you do more physical things.

 

[Amesalot]

1) The one you mean is we are imagining things, are hypochondriac etc.

Thank you, with my brain fog I couldn’t think of the word hypochondriac It was right on the tip of my tongue too!

 

[Amesalot]

Good to find our own one, but check with others, I have variety of supps and like Huberman and Selsick best - e.g. catching early daylight to improve the circadian rhythm.

I’m not sure I understood your response. Maybe you would be so kind as to elaborate. Good to find my own one, as in sleep schedule? Check with others, as in doctors or those in forums? Then you list a couple supplements and give catching early daylight as a supplement example? I feel like I’m reading this incorrectly perhaps.
For my personal sleep hygiene, I get early sunlight each morning for about an hour, sometimes more. I have a bright light that I use if I need to, per doctors orders. I have been seeing a sleep doctor and a psychiatrist who specializes in sleep disorders for the past five months. We’ve been working together to try to conquer decades of insomnia and get me to more of a routine sleep schedule. I have a sleep study scheduled to check for any possible sleep disorders. I am also well aware of any sleep hygiene tips. I feel like at this time I’m doing all I can as far as trying to balance my circadian rhythms.
If you’d be so kind, which supplements have you found work well for your sleep? I understand everyone is different. Just curious. Thank you

 

[Amesalot]

but unfortunately the majority of them don't know how to do anything except prescribe pain medication, and then drug test you every time you go in to see if you are using anything else. It's very controlling and unpleasant if they do that.

Yes I’ve heard this in the past from others who have pain for one reason or another. I suppose I was hoping things had changed. Not sure why I would’ve thought that Wishful thinking I guess

 

[Amesalot]

Also you may have noticed that you used the name of the most popular search engine above and it will have put your post into a moderator queue first. It's best to screw certain words like go.o.gle or L. DN up to get it thru.

Wow! Thanks for the hot tips. Now I know how to post like a pro

 

[Amesalot]

So many brilliant ideas

JayCS thank you so much for taking the time to read my post and respond to it. I appreciate your insights.

 

[Auriel]

Welcome to the forum, Amesalot ️ , I also struggle with household tasks from it , as for the drs, one (at the beginning) did actually say I was imagining it (and that's not cool) I also have an autoimmune too (thyroid) I take gabapentin for mine (fibro) but they tried me on all kinds of other things first

 

[Amesalot]

Welcome to the forum

Thanks for the welcome Auriel and for sharing your experience with me. I’m finding it really is helpful to hear other people are experiencing similar things in life. I don’t feel so alone. I appreciate you reading my post and reaching out.

 

[Auriel]

That's, ok ( I would have done it sooner, just been recovering from operation) it's really comforting place to be (plus you get to learn things about the other members, and it's nice)

 

[JayCS]

it can be hard to believe that pain has no associated damage or injury ... . so brain chemicals have some part to

Definitely. But it can be hard to believe that pain has associated damage which is not yet detectable...

brain chemical imbalance which I am more leaning to for fibromyalgia

Generally I don't like leaning into guesses much, but I do use each hypothesis as far as it helps me.

if I reach for something I get pain - I am not overreaching and putting the muscle under stress just a simple reach

When my tendon insertion points and my muscles aren't treated well, simple movements cause pain. Analyzing the origin and treating them stopped most, except exhaustion Ache.
So in my body I can see that something is over-reacting, but I can always detect origins of local pains and treat them, so in my body these are not central, they are all local.
Regarding pain experts: Irene Tracey in a video touching on fibromyalgia says she thinks it's a continuum from central to peripheral. (Her name for what others call "nociplastic" pain is "idiopathic" pain, btw., similarly meaning pain which can't be explained by anything else, sort of "pain in itself".)
On youtube that's here DOixCniuHTg?t=6297.

over the counter chemical supplements but chemicals such as Serotonin, Dopamine Norepinephrine Acetylcholine GABA (gamma-aminobutyric acid) and Glutamate the chemicals that are associated with neurotransmitters

Yes, so as lots of GABA and some glutamine (not glutamate) are essential for many areas in my symptoms, fibro and MCAS too, I'm with you about using these OTC chemical supplements / neuro-transmitters / amino acids to in my case increase my serotonin (notoriously often low in fibro) and not let my dopamine, norepinephrine, cortisol and histamine get too high - I can pinpoint all these, not just to pain, but GABA strongest to bladder muscle pain, and also histaminey burning facial pain.

Most of the research in this area is been done in the Mental Health field however there is some recognition of brain chemical imbalance in that doctors do prescribe anti depressants for fibromyalgia.

Yeah, what I'm doing is my own guinea pig trials and has nothing to do with meds, which work very differently, it's direct catalyzation.

I used to think Fibromyalgia was an autoimmune disease I don't think it is. It does not act like one

I've never subscribed to just one explanation and never will. My inkling that my form of fibro may have autoimmune components was again based on my symptoms (e.g. a feverish, inflamed feeling) and my treatments that improved that (cryotherapy and cold showering). Finding out both reduce cytokines seemed to substantiate autoimmune. Now I know that feeling can come tiredness and from too much cortisol, occasionally too much histamine. A cold shock can numb it, but it's better to adjust what I do accordingly. Despite that and the 2021 study making too simplified pre-assumptions, I still think some people may have autoimmune components, despite it being different to other autoimmune diseases. That wouldn't necessarily mean it's the fibro. But then I doubt fibro is a single entity, may well have something like subgroups and individual variance, so I'm careful thinking "fibro is" or "fibro does"....