My personal experience would concur with comments above about EDS/hypermobile patients being seen more by orthopedists as opposed to rheumatologists. I've see many orthopedists over the years (unfortunately) but didn't see a rheumatologist until I was 29 and my PCP (GP) suspected Fibromyalgia.
As his name was mentioned earlier in relation to Orthostatic Intolerance, I would note that
Dr. Peter Rowe has his own theory about the connection between EDS/hypermobility and ME/SEID.
In
Part 2 of the series he states:
In his
webinar for SMCI, he goes into more detail, including a discussion of the paper his group published on impaired mobility in a group of hypermobile ME/SEID patients, basically suggesting that people with hypermobility are stretching/straining more due to ligament laxity but that nerves don't stretch like ligaments. The constant strain of muscular-skeletal instability in the hypermobile creates the aforementioned diminished neurodynamics. At least as I understand him. ;-) Not sure what to make of it yet, especially as some of it seems a bit woo-woo, but it has gotten me even more interested (as if I wasn't already) in paying attention to basic muscular-skeletal mechanics.
Okay, reading all this through,and mulling it over. Very interesting.
I think Rowe's research explains a good bit of the underlying pathology for my condition. Which is something I've been puzzling over for a while now, so thanks all.
As background, I never considered myself very bendy as a kid. But, I was a bit clumsy, and sometimes things would go goofy. Like, I'd roll my ankles a lot (without meaning too). I can touch my nose with my tongue. I thought everyone could hyperflex their elbows like I did. My hips would click a lot. My wrists became easily fatigued and sore in gymnastics. But no super weird-looking stuff. I never really tried.
I was also always a bit "delicate." Fainting easily, hypersensitive, easily fatigued. Stuff like that.
I was also active, and did gymnastics and dance for 10+ years. I was never able to do the splits. But I did sprain my ankle twice (on relatively simple dance moves). I also started doing some exercise with free weights and some jogging as a teen. I was never especially good at any of these things, but hey, it was good and healthy.
Joint hypermobility DOES NOT equal muscle flexibility. I think a lot of people confuse these two things. They can go together, yes, especially in children, but they don't have to. This is very important.
So, I grew up. Two normal pregnancies. I thought myself an average, though a bit more fit and healthy, person. But then I got a tick bite with EM, and a few months before that probably EBV (not confirmed at the time). Went downhill with strange pain in my hand, then in my whole body. Initial thought was tendonitis in my hand, so ended up at hospital PT where the doctor found hypermobility in my finger joints and mild hypermobility in the rest of my joints. I brushed this all off at the time, because of the pain of the tendinitis and other weird pain I had and went for more Lyme research.
Well, more Lyme research was a dead end. PT went badly. Ended up at a rheumy who diagnosed fibromyalgia, noting that all my muscles were super stiff and cramped.
Fibromyalgia is.....well, ok, it's a name. But
why are my muscles all stiff and tense? And now I'm thinking about the joint hypermobility the PT doctor noticed. Now, looking at me now hypermobile is the last adjective you'd use. In fact, I've been having problems with my fingers actually not being able to extend to straight.
So, based on what Rowe is saying, I think what's going on with me is that I was always on the joint hypermobility spectrum. However, after infection (bacterial and viral) the myo-fascial stabilization of my joints became damaged. In response, my body has increased the spascity of my muscles to try to keep my joints together.
I tried the elbow exercise in the video, and yeah, OW! That really hurts. Tingles down to the fingers and up my neck.
When this all started peripheral neuropathy was researched, but my nerve conduction test, and the skin wrinkle test, came back normal. But I still have tingles, and I have cold numbness in my fingers while typing this. So his theory would also perhaps explain why I have nerve issues, while there's nothing detectably physically wrong with my nerves.
Now, I'm here on PR not sure if I have CFS. I have fatigue, and exertion induced fatigue, but it seems a bit more minor than what I read a lot of you struggle with. So I don't know. But the overlap between all these diagnoses is interesting.
So, yes, I totally understand what Rowe is saying with limited ROM with hypermobility. But I'm not sure if this is CFS specific. Or maybe it is. I don't know. Maybe he is uncovering the underlying pathology of a condition, which presents as painful muscle spascitiy (fibro) or muscular-PEM (cfs) in the subset who have hypermobility + infection. That's interesting.
I'm going to try a different PT place once I get referral from my GP. Maybe I'll see if I can squeeze in the sort of PT Rowe talks about. I've already started Tai Chi, and yes, it does seem to be pretty helpful.