I want to create a group of similar patients and share experiences / treatment options

[wabi-sabi]

so when we hurt all over, thats not FM?

I guess not!

But that's the issue... is the pain I feel like the pain you feel? No idea.

 

[Rufous McKinney]

is the pain I feel like the pain you feel? No idea.

hence, the unworkable subjective Pain Scale 1-10

 

[Zebra]

These are very specific symptoms for me that I believe are worth investigating. Of course I also have some more typical symptoms, mainly extreme muscle weakness and fatigue - I'm bedridden. Can anyone help me or let me know who has similar symptoms? We could try some things together in group and share experiences!

It seems this thread has gotten off track.

I do not match your subgroup, but I wish you the best of luck finding a cohort willing to compare notes and experiment with you.

 

[MartinK]

Thank you, yes, I want to get this thread back to track.
Okay...
So, I mentioned the main symptoms in the introduction.
now I'd like to move on to the next thing I'd like to compare:

- my me/cfs started suddenly overnight with flu-like symptoms (I also want to find people with a similar onset)

And now to the present, what helps me:
- drugs that affect GABA and drugs with anxiolytic effect
*it definitely does something temporarily positive with the muscles and also with the brain (which is interesting because I don't have mental symptoms)

And now what I do not respond at all:
- no reactions to antibiotics or antivirals

so, who so far is similar and could belong to our subgroup?