Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

1,560 Members
7,095 Posts
0 Online
Muscles & Bones
/ Chronic Fatigue Syndrome Support Group

Hypermobility

Bluebonnet08
Bluebonnet08
This seems like kind of a random question, but I was wondering if anyone else is hypermobile? At my appointment with a CFS specialist, she mentioned that I was hypermobile, which I had always known as double-jointed. She did an assessment and I scored an 8/9 on the Beighton Scale.
She said it was in line with Ehlers-Danlos-Type III (Hypermobility). This is apparently very common in those with CFS, POTS, and Fibromyalgia. In fact, I was reading that 80% of people with POTS have EDS-III. It is also very related to fatigue. I never knew I had this until a few months ago. I've read that a lot of cases of CFS are misdiagnosed and this could be one cause or it could be something that is found with CFS.
cmiat
cmiat
I don't know about hypermobility in general, but I have what I'd describe as acquired hypermobility in my neck. It was started by a motorbike accident in which I suffered a whiplash injury and other factors contributed to its development over the years.

I do know that when my neck is playing up, I often get CFS like symptoms from that. It's not when it's really sore or anything, that's easy to recognise. It took me a long time to understand that sometimes something subtly wrong with my neck makes me tired, vague and slightly nauseous - on top of my CFS.
triunfadora
triunfadora
Yes, I learned about hypermobility at Johns Hopkins when I was diagnosed. I knew my joints slipped in and out of place, but I didn't have a name for it before that time. They mentioned that I should be tested for Ehlers-Danlos but I never followed up on it. My ankles slip out and make me fall sometimes. Also, I can put on a tight blouse by making my shoulders go out of place. What a sad skill to have, right? Thanks for bringing this up. Many people have not heard of it. Much love.
DarlaC
DarlaC
I've never heard of this as a symptom for CFS or a connection between CFS and Ehlers-Danlos!!! Im thinking that those that suffer with Fibro may tend more towards joint dysfunction. It's certainly possible that those two could have a connection.

Actually, not too much surprises me anymore with these invisible illnesses. There is no end to the variances in the symptoms with all of us. We have to just treat ourselves individually as each new thing comes along!!
scootermom
scootermom
I,ve researched Ehlers-Danlos (ED) a little and found out that a number of Chronic Fatigue and Fibro patients are misdiagnosed because the fatigue and pain are caused by their ( undiagnosed ) ED!

Hypermobility is a common symptom but ED could also cause tissue weakness elsewhere in the body; such as hernias or bowel problems.

If you don't have hypermobility you could still have ED, as there are five types of this condition.

ED is not easily diagnosed, but it may be worth mentioning to your health practisioner.