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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Chronic Fatigue Syndrome (ME/CFS) Symptoms

Cort

Phoenix Rising Founder
Hey Cecelia - that's a great idea for the website (when I learn how to do it) - rate your symptoms!

My most limiting ones are

  • Postexertional malaise
  • MCS
  • poor sleep
  • Muscle and joint pains
  • inability to relax
  • cognitive problems
  • low libido
 

Sing

Senior Member
Messages
1,782
Location
New England
More on symptoms, symptom listing

Dear Cort,

I am interested to read your list. I think it would be useful for people to rate their symptoms, though this is challenging to set up. Some symptoms are aspects of other, more general kinds of symptoms/symptom categories. Do this on a good cognitive-functioning day!

Now I am just noticing the section called "Other Symptoms" above. I have those except for the rapid heart beat and fever. My temperature has always been low. In fact, I couldn't get off school when I was young because even when I was really sick I wouldn't have a fever-- 98.6 is a fever for me! Generally, symptoms involving speed and intensity don't pertain in my case.

When I was part of a mostly FMS support group (the CFS people almost never did--no energy apparently!) I noticed this was a distinction between the two disorders. The FMS people seem to suffer from intensities and some "hyper" aspects that I never have. We all had trouble sleeping, brain fog and pain but they complained more of pain and less of slowness, cognitive problems, PEM. It is interesting to learn that there are some different imbalances going on in our respective systems. And maybe there are people with a mixture of these problems. Let's see what we can learn here about ourselves!

Cecelia
 

Cort

Phoenix Rising Founder
I think you're accurate about FM; my understanding is much less postexertional malaise and of course more pain but also things like skin that's painful to the touch, numbness, nerve pains....

Never a fever for me - no feverish problems. Few flulike symptoms unless I get cold and then I get a low grade cold - fluey feelings etc. I'd much rather have muscle pain and tension, rushing thoughts at all - that fluey stuff is just miserable.