6 ms·

I've been quite interested in auto-immune diseases lately. I have a friend with fibromyalgia which latest tests[1] have shown to potentially be an auto-immune d

I've been quite interested in auto-immune diseases lately. I have a friend with fibromyalgia which latest tests[1] have shown to potentially be an auto-immune disease. The symptoms are similar to lupus, and also similar to what I hear people report as long covid. I don't have a background in medicine, but these all seem related and are all poorly-understood and treated. It is frustrating to watch as those affected have to fight every day just to get the energy to live their lives, constantly changing diets and routines just to try to make sense of what triggers flare-ups in their condition. [1] https://www.jci.org/articles/view/144201 https://www.jci.org/articles/view/144201

Miner49er 4y ago
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.
- cruano 4y ago
  That's half of the cases on House, M.D. It's not one super rare disease, but a combination of lupus + something else
mateo- 4y ago
since you're interested, may i present my childhood illness? https://en.wikipedia.org/wiki/Periodic_fever,_aphthous_stomatitis,_pharyngitis_and_adenitis https://en.wikipedia.org/wiki/Periodic_fever,_aphthous_stoma...
insaider 4y ago
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-chronic-fatigue-syndrome-identified.html https://med.stanford.edu/news/all-news/2019/04/biomarker-for...
- pcocko 4y ago
  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
- kilroy123 4y ago
  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.
  - FollowingTheDao 4y ago
    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.
    - kilroy123 4y ago
      You know that's actually really good advice. That is something I should be more mindful of. Thank you
    - throwaway202022 4y ago
      > 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.
gadders 4y ago
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/ https://www.nhs.uk/conditions/fibromyalgia/
- Cthulhu_ 4y ago
  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.
  - gadders 4y ago
    Yeah, it's hard to discern if they are offering those items as a cure, or as a coping strategy.
FollowingTheDao 4y ago
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.

Miner49er 4y ago

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.

cruano 4y ago
That's half of the cases on House, M.D. It's not one super rare disease, but a combination of lupus + something else

mateo- 4y ago

since you're interested, may i present my childhood illness? https://en.wikipedia.org/wiki/Periodic_fever,_aphthous_stomatitis,_pharyngitis_and_adenitis https://en.wikipedia.org/wiki/Periodic_fever,_aphthous_stoma...

insaider 4y ago

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-chronic-fatigue-syndrome-identified.html https://med.stanford.edu/news/all-news/2019/04/biomarker-for...

pcocko 4y ago
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
kilroy123 4y ago
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.
- FollowingTheDao 4y ago
  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.
  - kilroy123 4y ago
    You know that's actually really good advice. That is something I should be more mindful of. Thank you
  - throwaway202022 4y ago
    > 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.

gadders 4y ago

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/ https://www.nhs.uk/conditions/fibromyalgia/

Cthulhu_ 4y ago
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.
- gadders 4y ago
  Yeah, it's hard to discern if they are offering those items as a cure, or as a coping strategy.

FollowingTheDao 4y ago

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.