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Precisely. Which means if those of us who have chronic pain and just happen to also be hypermobile are being misdiagnosed with a collagen disorder, then we're no closer to knowing what is causing our pain. On many of the hEDS Facebook groups or on Twitter, it's become a sort of Grand Unified...

Interesting. I've always thought the Beighton Scale seemed like a remarkably low bar for deciding on a disease state or structural problem. Moreover, it doesn't really tell us much about functional capacity. Putting my hands flat on the floor or touching my thumb to my wrist isn't disabling. Not...

How would you define that? What would that look like to you? Would, say, frequent dislocations be part of that?

And avoiding FODMAPs. Several years ago I saw a piece at Medscape titled "Why telling your IBS patients to just eat more fiber may be bad advice." I immediately clicked because I had long since noticed that certain foods that were high fiber, i.e. apples, were painful to eat. Finally someone had...

I logged on just so I could "like" this comment. It gave me a good chuckle as it is so spot on.

FWIW, was looking for an overview of whatever actual biological evidence there is for central sensitization and came across this recent review by Harte et. al of the neurobiology of central sensitization. I haven't read the whole thing yet, but my sense is that there is a real problem with...

Yes. Though it's a bit more complicated in my case as I'm extremely right-handed as I've had four fractures among my fingers and my arm [EDIT: on my left side!] on four separate occasions -- three of them when I was 12 and younger. Moreover, when it comes to my right leg, I've had multiple...

I too have bad walking days and good walking days. Was even once passed on the street by an old lady with a cane while walking from the streetcar. One of my bad walking days actually happened on a day I had pelvic floor physical therapy. My PT was appalled at my apparent walking difficulties...

In addition to comments upthread about the SMC, "people who like to imagine they're part of some sophisticated intellectual elite, but want simple narratives can't be bothered to really look into the evidence," (seriously, @Esther12, this 100%!) and it being a small "c" conservative paper of the...

How is returning to full-time school or employment not an objective metric -- and probably among the most meaningful metrics at that? Even if the person is still having to rest the minute he/she gets home, to go from bed-bound to full-time employment is a remarkable improvement. In the nearly...

The point is not whether the remission of Jen or the LP patients is real. They're both very real. LP patients certainly had metrics like "I couldn't get out of bed; now I'm working." The point is how we interpret that remission. And the answer at this point is simply it is unknown how Jen or the...

I actually stopped growing at age 11. The injuries started at 10. I grew one more inch between 10 and 11, when I peaked at 60 inches. The subluxations/dislocations all began after I stopped growing. Or at least, growing taller. ;)

EDS Type 3 is a clinical diagnosis. She was the only doctor in my area with any expertise in EDS so I was sent to her. While I have a niece who, like me, is 9/9 on the Beighton scale, she has never had any injuries and as a high school cheerleader, she's had more than ample opportunity...

What may also be interesting is that I began to develop ME/CFS symptoms not long after I began injuring a lot.

Age 40. My GP was the one who wanted to refer me to the medical geneticist. As I mentioned, while I was I was always very flexible and had gut motility issues from infancy but it was only when I reached puberty that I began injuring. And not just soft tissue injuries (which were many) but...

After I was first diagnosed with EDSIII 6 years ago and began to look at the literature and saw that this was the only form of EDS for which the gene had not been identified, my first thought was to wonder how we know it was even the same disease. Indeed when I first read the constellation of...

When @Barry mentioned upthread the idea of stress from surgery pushing patients back into remission, my first thought was, didn't Suzanne Vernon suggest something like that a decade ago? And since it's been brought back up, I decided to just see if I could find it via Google and it, thankfully...

Perhaps @dave30th could submit something as it would probably be pretty easy to dust off what he's already said elsewhere? Just a thought.

When in the midst of the hell that is ME, all we tend to think about is how much better it could be if we just got treatment. How much we just want to get our lives back -- lives that were so much better than they are now with all of its myriad sufferings. But it can be hard to remember that it...

I'm one of those with a hEDS diagnosis (FWIW), and too much rest for me will result in problems with injury/joint instability. I have some theraband PT exercises that I do (4-5 reps but absolutely no more) to remind my muscles they must keep working. But if I feel at all worse than Normal Shitty...