I don't have your disorder, but I am very thin and 5'4", have torn ligaments and tendons and muscles all over my body from a masseuse--basically most joints are affected severely, grade 2 & 3 tears--and a pelvis and spine moved out of place. IRL, I feel all the joints/spine/pelvis move even with minor movements or even from internal organs doing stuff. I have all sorts of severe cracks, pops, joint subluxations and instability when trying partial. I am afraid to throw out the spine and paralyze myself. So I am taking a rest after days of up to 50 tries each. My neck and rest of the body need it.
Do you have anything that has helped the pain or condition to any degree, a medication or treatment? PM if you do, b/c I am out of ideas.
I am sorry to you. I know how miserable it is.
There are no "cures" for any of the issues I have. IveI only had 3 doctors in 20+ years who even tried to help although they didnt even know what POTS or EDS were at the time. The goal is to treat symptoms, i.e. pain, but with some other genetic issues I have I am very limited in what meds I can even take. I basically need opiates and the dose needs to be at least doubled.
Because of the issues with my autonomic nervous system my body is literally always in fight/flight mode and I have outsized adrenaline responses to what seems like everything. For example, when you swallow sometimes you hear a sort of 'clicking' sound in your ears? That causes my heart rate to go from 50 to 150+ easily. But then there are things that should cause me to release adrenaline that don't. I was in a serious car wreck about 10 years ago. Someone swiped me on the freeway going 80-85 mph (I was actually getting passed so everyone else was going even faster!). When the ambulance came they were asking everyone if I was actually the person who was in the car because it was completely destroyed and I had completely normal vitals. It was so weird.
Anyway, I just get shuffled around from doctor to doctor. It's impossible to get the meds that work because no one prescribes them anymore. You have to go to a pain clinic and sign a contract to be drug tested which I refuse to be subjected to. I was born this way and yet am treated like a junkie criminal just so I can have a shot at even attempting to function in society.
What you describe sounds like it could be a connective tissue disorder, of course I'm not a doctor. Search for Dysautonomia International, they have a lot of good info on their website. There are so many things that can cause these issues, it might be worth a look.
I am bedridden and can barely stand long enough to take a shower and when I do my heart rate goes up to 200+. I faint all the damn time and I have whats called an "autonomic crisis" everyeday, sometimes multiple times per day. This is due in part to vasovagal syncope as well. I am still waiting to see some niche specialists and don't have it 100% figured out, probably never will but I'm just SO tired of being written off as a drug seeker or being told to go see a psychiatrist because it's "just stress" It's taken forever to save up for a wheelchair that is light enough and portable enough for me and it's such a hassle using it that I pretty much never leave home anymore.
This is not me but is very similar to what happens. I just wish my heart wouldn't start back up again which is why I now wait to ctb ;)
https://www.telegraph.co.uk/news/he...-times-in-one-year-due-to-rare-condition.html
The dislocations and subluxations are soooo annoying. When I was younger they were easier to deal with. I could pop myself back into place no problem. But now, for example, my hands/fingers are so stiff they are curled/bent all the time. I have to stretch them out manually. People don't really get how I can be so flexible yet painfully stiff at the same time.
Do you have GI issues as well? I have gastroparesis and it's flaring so badly right now. Pretty much living off of sugar free electrolyte drinks, rice and potatoes. I can't afford the gastric emptying study that would help me get a feeding tube and a picc line for fluids so, again, waiting to ctb. So sick of all of this!
