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Thanks for the responses! Yes, epinephrine would kill me. Maybe literally. I respond badly to any sort of stimulant, caffeine, d-ribose, ALCAR. Tiny doses of Effexor, an SNRI, landed me in the hospital with a potential cardiac event many years ago and left me twitching so badly I couldn't sleep...

See also our Members Only thread on Dentistry -Dental treatment I've never had a cavity but at my once o'half decade dental check-up the dentist found a tiny cavity on one of my back teeth. I'm completely housebound and mostly bedbound. Fairly sensory sensitive. Mostly just all around fragile...

I'm a big believer in the cliche that gets beaten into every writing workshop student: show, don't tell. I'd rather someone show me that he or she is kind or smart or funny than merely tell me he or she is kind or smart or funny. Because Twitter is filled with a lot of anger (which is often...

I've had life long gut-motility issues that finally wandered into the gastroparesis territory last year after increased Baclofen use (was also trying a low-carb diet just before so may have also contributed). Severe nausea and pain after eating, etc. What was especially impairing was that after...

Just wanted to add that I've wondered this too. When I use crash as a verb, e.g. "I'm crashing", it's usually an acute, almost emergency-like situation where I need to lay down in a dark, quiet room immediately. I cannot get warm and need multiple blankets. My heart is racing. My face is pale...

The vertigo started about a year and a half after onset (or 18 years after, depending on how one dates my onset). Initially it was brief bursts of intermittent vertigo that went away after a couple of weeks, which was diagnosed as labyrinthitis. The vestibular torture -- er, I mean testing...

I saw the orthopedist(s) routinely growing up but never once went to a rheumatologist until I was almost 30 and referred to one to be evaluated for Fibromyalgia (which seems a far more likely candidate for causing wide-spread pain than hEDS). It started with one joint: my right ankle in which...

Or, let me put this another way. Your symptoms -- and all of those diagnosed with hEDS -- are almost certainly based on a biological problem. It's simply that the diagnostic criteria used to explain that biological problem have almost no biological basis. I don't know if that helps?

Mine was the opposite; first multiple fractures, soft tissue injuries, dislocations, then ME/CFS-like symptoms. To me, if there is a link between hEDS (which is what I think you meant instead of HMS?), it's probably this. You get injured, if you get so repeatedly or bad enough or need surgery...

I'll say it again: Your symptoms are very real. It's the explanation your doctor is giving you to explain why you're having those symptoms that may not be

As someone who has been diagnosed by a medical geneticist with hEDS/EDS3 (as it was known when I was diagnosed), and who has spent much of my life in braces, on crutches, in physical therapy, and became completely disabled with ME/CFS after surgery to stabilize unstable joints after hundreds of...

Well, I'm really glad for y'all who didn't pin your hopes on Rituxan... BUT Four years ago when they started this study, I was getting worse. I knew intellectually that it was a bad idea to get excited about this study because it's so so so common to see a large treatment effect in a small...

:rofl::rofl: I logged in just to say you gave me a good chuckle, @TiredSam. Seriously, after spending most of this week weeping whilst reading this forum, I just have to offer a hearty thanks. :)