u/Brave_Question3840

So, although I am not new to hEDS and subluxations and even dislocations (mainly ankles and wrists), my shoulder has been giving me troubles for the past couple of weeks, it’s been constantly slipping in and out of place, like 20+ time a day. Yesterday was one of those days where I was breathing, not moving and it would pop out.
Around 1, I felt the worst pain my shoulder going down my arm, nothing like I usually feel. I tried pushing it back in, I couldn’t even move my arm. By a miracle I got a public clinic appointment 2h later (in canada, that’s almost impossible), she checked it, told me to go to the ER because she suspected it was dislocated. By the time the ER had done the xray, my arm was swollen red, completely numb, still couldn’t move. Xray showed a sublux, and the doctor just softly moved my arm anf pushed it back in. Sent me back home in a sling for 2 days max and told me to take advils. I also got a referal for orthopedics, but that will take weeks.
Since last night I’ve just had the worst pain, still can’t move my arm, burning, pins and needles, stabbing pain and an nsaid + voltaren hasn’t touched it. Eff I even took a percocet and it didn’t do anything. Now the next morning, still the same symptoms. Ice makes the pain 10 times worse
Is this normal for a dislocation? The last times I had them I was a kid so no recollection of any of it.
Tips? Tricks? What can I do?

I have hyperpots/OI, doctor keeps interchanging it, and I’m on clonidine 0.1mg x2 a day, but I am actually 0 functional, like it’s not even funny anymore.

I can barely get out of bed to go to the bathroom, I can barely cook dinner for me, showers are a guaranteed syncope even when sitting down. It’s becoming unsafe for me to be on my own.

I have over 8g of sodium a day, I hydrate, wear compression etc, but I’m still almost completely bed bound.

I’m exhausted constantly, dizzy, lightheaded, migraines, vision changes, hearing changes, head pressure when standing up.

Neurologist (autonomic specialist) wants me to do physio for my hEDS because he says my pots/oi is secondary to it, but that’s a 12 month waitlist, and he’s sending me to an hypertension doctor but he says he won’t do anything else, even when I keep telling him that I’m not functional

How do you guys even do anything? It’s not even about pacing anymore, it’s I can’t do anything whatsoever. I’m just so exhausted of this and I don’t know what to do. I don’t have a pcp, gp, family doctor or anything, no walking clinics no nothing. I’ve had all the testing but an holter monitor.

Any tips? Tricks?

Hi so, I have what I think is type 2a or 2b hair and no matter what I do, my hair, especially near my neck at the bottom, like where you’d get an under cut just gets knotted so terribly it literally becomes dreads, in minutes, after brushing it, after sleeping even though I sleep with braids on. It constantly dreads and I don’t know what to do anymore, my hair has always done that, nothing new but I’m starting to be really struggling with it?
I have dyed hair if that helps, but it’s been happening since I was a child. (Artic fox aquamarine hair dye)

I use attitude shampoo, the honest company detangler and conditionner. I use these because they are gentle and not scented, I have very bad eczema when products are perfumed.

Anyway, what can I do to prevent this? Anything?
Thank you

I’m getting a TTT tomorrow morning because my specialist isn’t convinced it’s POTS but more orthostatic hypertension secondary to hEDS, but I mean I have all the POTS symptoms too. I get syncope very often, and all the presyncope symptoms too!

Has anyone had their TTT with orthostatic hypertension? Or hyperPOTS? How did it go?
I assume it will be awful but I wonder what you experiences?

I’m getting a TTT tomorrow morning because my specialist isn’t convinced it’s POTS but more orthostatic hypertension secondary to hEDS, but I mean I have all the POTS symptoms too. I get syncope very often, and all the presyncope symptoms too!

Has anyone had their TTT with orthostatic hypertension? Or hyperPOTS? How did it go?
I assume it will be awful but I wonder what you experiences?

I’ve started clonidine 0.1mg x2 a day, once morning once at night about three weeks ago. I have noticed a significant reduction in the adrenaline dumps caused by my hyperPOTS, but it has not touched my heart rate whatsoever. I mean it lowers it at rest, in the 70s-80s, but standing up its not lower than 130-150s, no matter what. My blood pressure is still very high constantly, sitting down now i’m at 152/100. HR 110 and won’t go lower unless I’m laying down.

I have over 7g of sodium a day as my doctor told me up to 10g, I drink 3-4L of water, compression socks, small meals etc. I also have hEDS so exercise is complicated.

Anyway I wanted to ask those of you who take clonidine, are you having a similar experience? I walked up stairs yesterday and was at 190 and it wouldn’t lower under 150s for hours.
Is this normal for clonidine? I can’t see my doctor until july, even if I try.