mozaicbeading
New member
- Joined
- Jul 21, 2022
- Messages
- 7
Can you recommend a doctor in NC for CFS/CFIDS/ME - Chronic Fatigue Immune Dysfunction?
Ah, that's what I thought.He called it that because CFS was too vague.
Very interesting! My rheu said similar thing but not suggestions about what to do! Have you found a good NC dr?
Ah, that's what I thought.
And what do you think, does the immune focus fit and help you?
Difficult this trying to label something that isn't yet understood.
An alternate name for fibromyalgia is "fibromyalgia syndrome". Syndrome makes it sound as if it isn't a real illness, 'just something vague'. While fibromyalgia alone means muscle fibre pain, which is only a small part of what we suffer. I prefer the latter name, but...
Also reminds me of the rheum that diagnosed my fibromyalgia using that argument to put forth the beautiful word "polyinsertionstendomyopathy". Meaning the tendons around my joints hurt. Which is true. So first I thought: great, she knows what she's doing. And it did me the service of helping me find that what I thought was joint pain isn't, it's tendon pain. ("we" if we haven't also got a joint condition.) Meaning if I treat the tendons with acupressure, massage gun etc. that pain gets better. So very helpful. But what about my other local pains, my Ache, my fatigue, my insomnia, my fog, my IBS. A more precise name for a vague condition is misleading as it ignores the rest.
or (since my quote is in there) toCFS/CFIDS/ME - Chronic Fatigue Immune Dysfunction
polyinsertionstendomyopathy
In case someone's confused, like I was first, @Cbreef66 was the one who wrote
"Very interesting! My rheu said similar thing but not suggestions about what to do! Have you found a good NC dr?"
I'm not sure however if "similar thing" refers to
or (since my quote is in there) to
whilst "good NC dr" will refer to mozaicbeading's thread title/post...
"not suggestions about what to do":
My 1st rheum excluded anything rheumatological, but denied FM, my 2nd diagnosed FM, but only gave metamizole (banned in the US) and said: "keep on exercising", "don't worry about it". I only went to get a clinic referral after, got everything else excluded and ended up doing it all on my own.
Since FM/CFS aren't rheumatological, but mimic those conditions, we are sent to rheums for exclusion and some gain a lot of expertise on it (see Andrew Gross' brilliant youtube video on FM), others have enough other things to do rather than treat something that isn't particularly well treatable by docs...
If at all we'd need a network of specialists according to our type of condition and co-morbidities, as well as a GP/PCP who can holistically point us to all the many mental, physical, dietary, environmental, (med) & supp treatments available and people who support us trialling them und find and expand our collection of things that help a bit (in my case 100+/d all things considered). The best docs are ones that point us to this forum .
that is just crazy!!who doesn't take insurance, and requires a first time visit of 4 hours at $498.00 per hour