I've been struggling with the same sort of thing for 8 years now. I've been to dozens of doctors in several different countries but never got a proper diagnosis.

From my own research and observations I'm quite confident it is, as you elude to, an auto-immune related disease. The two major triggers for me are exercise; particularly anaerobic e.g weightlifting, and alcohol. Alcohol actually alleviates the symptoms for a day or more and then undoubtedly i'll struggle for a few days after that. Which points to alcohol's suppressive effects on the immune system.

I really really hope this, and similar research[1], turns into something tangible

[1] https://med.stanford.edu/news/all-news/2019/04/biomarker-for...

I'm in the same boat. My main problem is atypical facial pain and I don't have a solution after visiting several neurologists and other specialists

I've been dealing with autoimmune issues for years as well. I have yet to find a doctor that is willing to help me get to the bottom of it. I too have seen doctors in multiple countries.

For me, the trigger is carbohydrates. Doesn't make having a good social life easy. I'm on a forced ketogenic diet because of it.

Yes, for me as well. I would say, if you are doing Keto, watch your Omega 3/6 balance. My brother did it for a year and focused on mainly red meats. He lost a bunch of weight but the inflammation from the Omega 6 is what probably caused his ankylosing spondylitis and triple bypass.

I quickly became manic when I only eat red meat.

> the inflammation from the Omega 6 is what probably caused his ankylosing spondylitis and triple bypass.

How confident are you that this is the case? This is now the second story I've read of someone on a keto/carnivore diet having to get a triple bypass after eating too much red meat. Was his omega-3/omega-6 ratio really that much worse than that of the average person not on such a diet (not that that's a great standard to compare against, but the average person is also not getting triple bypass surgery)?

I know there's a lot of evidence against the notion that saturated fats cause CVD, and omega-6s and inflammation is a compelling case, but I'm worried we're missing something.

You know that's actually really good advice. That is something I should be more mindful of. Thank you

Interesting, why do you think carbs are a trigger for you? I always have bad IBS symptoms when the other symptoms flare up but I haven't been able to find any foods that seem to directly correlate with it.

I don't think, I know. After a lot of trail and error it's a night and day difference.

Intermittent fast and eat very low carb – no stomach problems. Eat too many carbs more than ~25-35 – stomach problems.

My personal theory is that many long covid cases are people who developed autoimmune diseases either from covid or around the time they got covid.

That's half of the cases on House, M.D.

It's not one super rare disease, but a combination of lupus + something else

since you're interested, may i present my childhood illness?

https://en.wikipedia.org/wiki/Periodic_fever,_aphthous_stoma...

Exactly. They are so focused on trying to categorize the symptoms that if it does not fit in any known pattern they just shrug and say it is all in your head. This has a lot to do with insurance coverage but also the training of doctors.

The NHS seems to think that Fibromyalgia is more mental than physical. [1] Anecdotally amongst my facebook friends the people that do have it also seem to be the people that self-report mental health struggles and anxiety. It seems to be much like ME in that regard.

[1] https://www.nhs.uk/conditions/fibromyalgia/

It's in part because of a lack of knowledge as to what it is; it's a disease without an obvious cause, nor an obvious cure. They can't cure it, but it seems that physiotherapy and mental health care seem to help... a bit? But honestly it comes across to me as them trying to make you no longer think of it as a disease, that is, to just accept it and take it as it comes. Which is shit imo.

The condition is also one for which there is no test; it's one that is diagnosed via exclusion.

Yeah, it's hard to discern if they are offering those items as a cure, or as a coping strategy.