EDS without the obvious hypermobility/flexibility?

[ProfessorBranestawm]

This is weird please bear with me.

Brief history:
POTS symptoms started around 11 (dismissed by doctors at the time)
Got very unwell after flu in mid twenties, got diagnosed with CFS/ME and they also confirmed mild POTS then.
Diagnosed with fibromyalgia a few years later as the pain was always a bigger problem than the fatigue.
Recently diagnosed with PCOS, not sure if that’s relevant.

Anyway lots of people have said I probably have EDS because of the fibro/POTS, they’ve even mentioned that IBS and even ASD (I have both) can be related?! I’ve always dismissed it because I’ve never had hypermobility issues. I’m not flexible at all other than my hips. I’ve never dislocated anything.

But I do have what I now realise are weird joint issues sometimes. The way I can tell I’m getting a pain flare is my elbows, they really hurt before anything else. I get pain in my upper arms when they feel like they need to crack right down the bone .

I also seem to hurt my joints easily. Joint pain has always been a problem generally such that I was checked for arthritis etc. The other day, I managed to strain my thumb just by putting in my mooncup it hurt for hours after just because I moved my hand at a slightly odd angle.

I’m not really sure why I’m posting as I don’t think there’s any point in following this up, there’s no medication or anything, I’m not able to work regardless, I’m just curious now as I’ve started to realise that actually a lot of my pain is joint related.

Any thoughts please? Particularly any issues/symptoms that aren’t the obvious?

Two of my (adult ) daughters have EDS... DH is almost certainly the genetic link (he hasn't been tested but is hypermobile , has POTS and heart problems and is under a cardiologist despite being an athlete). Both are mind bogglingly bendy but they also have very regular dislocations, so I suspect you would not be diagnosed without scoring high on the Beighton Scale.

Both girls have severe POTS and one has severe scarring issues, the other less so, They bruise horribly and they hurt pretty much 24/7 which is miserable.

Both however do keep mobile (realistically one will be in a wheelchair in a few years, she's 27 now). Pilates is a good exercise if you can face it ..gentle but good for core strength. I know how frustrating it is when there aren't clear answers (I have ataxia without a clear cause) but it doesn't sound like EDS tbh.

I thought I scored zero on the Beighton scale - can't even cross my legs, I'm that inflexible. However when assessed by a rheumatologist it turns out I do have a hypermobility syndrome - if you look very carefully at what the actual joint is doing when I move, it's unstable, but most of my muscles are too tight so I can't do the bendy stuff. Jury is out on whether I have EDS, fibro, and various other things.

I am intrigued by the scarring thing.

I do seem to scar easily. I have a lot on my arms, I was in hospital due to self harm, now obviously I would expect deeper ones to scar but 18 years on even the very minor ones are still there.

But yeah... not bendy so who knows 😕 it’s harder to find out about the types other than hypermobile type. It could be that all these other issues are coincidence.

Sorry your DDs are in so much pain. It’s miserable. :(

I have plans to try Pilates soon at my gym! :) I tried yoga as well but I’ll see which works out better.