hypermobility assessment tomorrow and craniocervical instability question

Having been housebound with ME/CFS for over twenty years, I was recently diagnosed with autism and I now have hypermobility assessment tomorrow! I have always been hyperflexible and at the grand age of nearly 60 I can still lots of weird things with my joints and limbs (despite absolutely avoiding any stretching exercises as it affect my joints)

Over the past week, I have been spending time wearing a soft cervical collar as a way to test out the cranial instability theory. I've found to my utmost surprise - shock- it makes a huge difference to my day. I can think clearly and I no longer feel exhausted after an hour. Why is that? Should a soft cervical collar really make such a difference? Should I mention this to the consultant tomorrow? Or will that increase the possibility of being dismissed? Can I continue to wearthe collar? (I've read that is it bad for the muscles)

Think of me tomorrow (pray if you do) as I've had terrible experiences with being dismissed by medical professionals. I really want to get to truth and remain calm in the process.

 

Thanks, Trish. I also hope the consultant is nice or at very least respectful. Though I have promised myself a huge cake if he isn't. Making it a win-win situation (kind of...not really but anything to get through it).

We don't allow members to give each other medical advice, so we shouldn't try to interpret your experiences with the collar, but I think it is something to tell the doctor about if they being helpful.[/QUOTE]

I suppose I should have worded it differently and asked if anyone else has experience with wearing collars??

 

I hope the appointment goes well, Lisa. I reckon you deserve the massive cake whatever happens!

 

Thanks, Kitty!

 

Just back from the appointment and pretty exhausted, but I thought I'd share.
It didn't start well as the consultant asked what could he do for me, and I said that I have hyperflexibility and wondered if that had affected my health. He said casually 'Probably not'. (Deep breathe, remain calm, I told myself)

But looked me over and decided to the contrary. He diagnosed me with hypermobile Ehlers Danlos Syndrome and he also suspects vascular Ehlers Danlos Syndrome. He also diagnosed POTS and suspects dysautonomia.

He also noted from my files that my bloods in the recent past show that I have an autoimmune disease and was surprised my doctor hadn't picked that up.

Wow! I left the house no explanation of my ME/CFS and I may have a spectrum of explanations.