u/broken-Zebra

Hi I am diagnosed with hEDS, MCAS, cauda equina syndrome and fibro. I’ve had essential tremor for years as well as severe restless legs. I also get an internal vibration? That other people can feel. It gets worse when I’m exhausted or have done too much or have hurt myself or have an allergic reaction. Suddenly my neurologist wants to say it’s FND when looking it up it could come from any one of the above conditions especially as I have CCI and severe nerve damage from the cauda equina. He has listened to my worries about getting this Karen but also says I won’t get the treatment I need for it without the label. Any thoughts?

Hi, my hips are subluxing multiple times a day and sometimes getting stuck out. I want some support but the si joint belts don’t go down far enough. I want something that will compress pretty much past where my thighs start. I can’t seem to find anything suitable. I also need to be able to get it on without dislocating a shoulder or herniating my back. Any ideas please? I’m already waiting for double knee replacements so I’m finding it very hard to walk.
Many thanks.

Hi, I have EDS , MCAS and gastroparesis. I’m allergic to or have reactions to everything.
Everything the doctors have tried for my MCAS has given me severe reactions. I decided my myself to try quercitin. I’ve brought 1000mg gummies and have only just put it together that the fact that I’ve been worrying myself to death that I’ve now got ME as I can’t stop sleeping. I’m more nauseous than usual and have dizzyness could it be the quercitin? I am on other sedating meds but I’ve never had this problem. Please tell me it’s the quercitin? I thought it was a stimulant not to make you sleep!