1) I have not seen a lot of those other theories. I AM very interested in looking into them and think it is worth my time. So thank you for pointing me in a direction. I have found mention of those other theories but not a lot to back them up.
Apart from the recently upbolstered 2) autoimmune hypothesis, there's the connection with 3) SFN = small fiber neuropathy that has been studied for 10 years, then due to researchers finding increased hand nerves 4) AV-shunt-disorder, became trendy for a while a few years ago, 5) the neuroendocrine link has a little evidence for it, 6) mitochondrial involvement (ATP / CoQ10) is "the" cause for some, 7) vaguer: underlying issues like simply the chronification of pain(s), sleep disorder, low GABA, other diseases (e.g. SPD). 8) genes. And a recent one "my body" has come across is 9) MCAS, mast cell activation syndrome. Two more I know of too silly to mention.
And then there's the large amount of apparent biomarkers (1. cytokines/chemokines/mast cells; 2. salivary biomarkers, 3. muscle pressure, 4. microbiome/molecular/glutamate, 5. hormones like serotonin, 6. protein backbones 7. BCAAs and 8. insulin resistance).
(If you search for "Fibromyalgia References: Triggers, Symptoms, Treatments - & Hunting & Tracking them" on the web, you'll find my overview with links.)
Altho these are more obviously not "the" cause, they raise the question how many of the cause hypotheses are actually also only "biomarkers", i.e. actually more an effect than a cause. Goebel's 2021 autoimmune study managed to reverse symptoms in mice by changing their autoimmune (immunoglobulin) state. That sounds clever. But I manage to reverse quite a lot of my symptoms by increasing serotonin using GABA: That doesn't prove that GABA or serotonin is the cause, even for my fibro.
And going back to the cause as supposedly being "CSS": "Nociplastic" pain as I mentioned has recently been coined by pain researchers as pain without a) cellular or b) nerve injury. But that's just a description of pain without a cause, which may mean as yet not being able to find a cause. Also they don't know why it happens: they don't know a cause of this "pain without a cause", which to me means it is still just an auxiliary construct. I also don't find it particularly helpful to use hyperalgesia and allodynia to show that the nervous system isn't working right, as many of us don't have these, and even if they did, these do not prove that there is nothing there, as if it were simply the body "making up" the pain.
When I compare the way researchers talk and write to my symptoms, of which pain is only a small part, I have the feeling there is a wall of fog between them and these symptoms. One giant part of the problem is that scientific medicine is based on measuring, but they're like blind people measuring different parts of the elephant, so causes, explanations etc. are hard to find. Another giant part is that there are so many types of treatment out there, and only some of us are trying "everything", a few of us are finding one or a few things as their miracle cure, but most of us are only being helped a little bit. A third part is that we are so different that it seems likely that there are quite a few different forms / subgroups of fibro, altho our core symptoms (unexplained pain/energy/sleep/gut) are very similar. A fourth is that most fibromites have difficulty describing their symptoms precisely. I go to great lengths to get that sorted, which has helped me get all localized pains down.
Are the theories about fibro a good way of spending our time? Well, there's not that much to read, and they are interesting pointers to understand how our symptoms work, to possibly find out what triggers & what alleviates or even prevents them. But I think symptom analysis and tracking, and trigger hunting are definitely more important, putting theory into practice.
With that said, I have plenty of autoimmune diseases in our family. Anti-inflammatory supplements, as mentioned before, have helped with pain so it's not far fetched. So, I really am interested in more info
Sounds then as if this might be 'your subgroup'.
. I was keen on the autoimmune explanation as long as cryotherapy helped me, but I seem to have moved on to a different stage. Finding I now have MCAS has shown me that the immune system can cause problems even without
autoimmune processes being involved, and it seems to explain quite a bit, but knowing this has helped less than the additional problems it has caused...
I spose I did often use my personal theories of what might be wrong to what might help me most, to prioritize treatments, but essentially I had to try far above 100 treatment types and turn over the stones again and again, like you said changing doses etc. In the end it's more about improving my sense of my body and its reactions. But any little idea something I read or a doc said to understand the way our bodies are sposed to work and testing whether mine does or not helps.
2) I did not say where I saw the 80% but would need time to look for that. I just said I have been learning a lot from van der Kolk and it does make sense to me. But it does not mean he doesn't have valid points. Granted he is a trauma doc so he would have biases but everyone does.
Agreed!
Given that you view those as silly and take the info with a grain of salt, it would be helpful to know and learn other places of where to look for other reliable information. ...
In case you misunderstood my last sentence in the post above: I regularly (>10h/wk) read studies on pubmed, JAMA and the other study sites to check up on what sites like healthrising, healthline, verywellhealth etc. as well as German sites are suggesting. It's only fibromyalgiaresources I was referring to as often "silly". Finding a supposed connection between fibro and autism there the other day, and only there, I did read what they were saying, but was proven right that it was 'nothing much'. Similarly, the list of "251 symptoms" of fibro provided there is equally uncritical, but I did use it as basis for my own better categorized list of symptoms all the same.
I actually don't read thru "websites" much, tho, I look in all detail for answers to questions on forums or my own.
I guess I did link. ... forget ... sharing general resource ... offense, none intended
No worry! I think it "hurts" a bit when our posts are deleted - apparently without forewarning? I sometimes get "awaiting moderator approval", even without a link in it. If that happens it's perhaps best to copy the post somewhere else to reuse it.
You're right: other forums allow pointers to general resources. This one only to internal ones. Due to bad experience I think, also different platform software and amount of publicity (everything is public here, that might attract spammers' attention).
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