People with a diagnosis of hypermobile Ehlers-Danlos syndrome (#hEDS), do you also meet the International Consensus Criteria for Myalgic Encephalomyelitis (ICC-ME)? (See here: onlinelibrary.wiley.com/doi/full/10.11)
Conversation
Replying to
I was originally diagnosed with M.E and Fibro. 3 years and lots of fighting later I was diagnosed with hEDS.
1
Replying to
I chose “Not sure” bc I used to fit ME criteria 100% & was pursuing that before my EDS dx. now it’s a smattering, not as severe. my symptoms gradually focused on pain, instead. 🤷🏻♀️ I’m fascinated by the EDS & ME connection!
1
2
Same with me. I've had mild hEDS all my life. Went through a period where I fit all of that criteria for ME/CFS. Now no longer do, but my hEDS pain/joint issues etc became much worse. I'm now left as a clear cut case of hEDS. I would no longer fit ME/CFS
1
Replying to
Wow so hard to know. These criteria are broader than i last saw. Huge overlaps with Lyme, CIRS, POTS, MCAS, EDS—how to tell?
1
1
11
These are broad criteria, but I would fit a dx of ME with this criteria. I have had all of these symptoms come & go at different times since I became chronically ill. The only one that's tricky for me is PEM. I can't do what I used to do, but my PEM improved with light exercise
1
6
Show replies
Replying to
I seem to fall just below the criteria, but I also wouldn't be surprised if I did fall within the criteria within a few years since I've been getting increasingly sick, even just in the last year.
2
Replying to
Yes, I do. Though my EDS specialist said that because my EDS is so severe and many doctors do not take ME/CFS as seriously (despite solid literature), it is at the bottom of my dx list on my papers that travel with me to new doctors.
3
Replying to
Five years ago, I had a spontaneous spinal cerebrospinal fluid leak. I would have probably fit the ME criteria then; I was bed-bound for several months. I still fit hEDS criteria. Since making nutritional changes, I’m now largely symptom-free. I often do this much exercise now
1
1
12
Can you share the nutritional changes you made which enabled your recovery?
1
1
Show replies