According to what I have read, CFS is diagnosed when 4 of 11 symptoms are present at one time for 6 months or longer.
1. Does this mean 4 of 11 symptoms must have been present at intial flare?
2. Do flares exist in CFS?
3. During remission between flares, can one feel completely fine?
4. Can symptoms come and go or change?
My symptoms started with fatigue and joint, muscle pain, etc. initially and then changed with pain being minimal and fatigue still severe. Only in the 5th month after my initial flare did I experience cognitive impairment and dizziness.
I was initially diagnosed (I think misdiagnosed) with fibromyalgia.
My symptom list is extensive. I won't list all here unless asked.
Also have blood pooling in feet and hands and poss. raynaud's.
I am currently being evaluated by a second rheumatologist, vascular surgeon, and neurologist to rule out other conditions.
Thanks for answering my questions. Please feel free to ask me yours!
You're reading the wrong definitions (probably CDC or Oxford). Try the "Canadian Consensus Criteria" or even better, the "International Consensus Criteria".
First of all, everyone with typical ME/CFS will have post-exertional malaise or post-exertional neuroimmune exhaustion. Secondly, I think we all have way more than 4 symptoms, and even 11 is on the low end
There aren't really flares as such. There's PEM/PENE, which are usually called a "crash" and feels like getting a nasty case of the flu starting within a day or two after being too active. It's normal for additional symptoms to develop months after onset, and remissions and relapses are also common.
The general consensus on a large forum where I hang out (Phoenix Rising) is that the requirement is that symptoms are typically present for you at any given time. Not necessarily all the time, and they certainly aren't all required to be present at onset.