Sorry to hear you’re going through these symptoms for so long. Its a disgrace that you have had to deal with it for so long. I have had all of these symptoms in the past at different times but in the last month or more its constant and I’m cracking up already 🙂 Everything you do is such a challenge.
I’m the same, lots of meds (seems to be max doses of everything) and still suffering. I would be a lot worse without pregabalin though. Tapentadol seem like smarties, I’m taking instant and prolonged release. I’m sure I’d be worse without them though. My GP thinks I’m crazy and my Physio and Rheumy think that nothing is wrong, just some degenerative disk disease and some arthritis and stiff muscles. Nothing Physio wont fix. Ha, I was in rehabilitation for EDS problems when all of this kicked off. I was testing to see if I could swim in the hydro pool. Ironic or what!!! It’s a battle to try to get anywhere with all of my EDS related problems, I’m going around in circles. I think one of the problems I am facing is my income protection insurance company decided I was fit to go back to work at the same time as this is happening. I’m sure my Dr’s will be suspicious and this will skew their thinking. Maybe I’m paranoid but I think it’s probably natural for them to think that, especially with a “normal” MRI.
Are you new to having EDS or Chiari? I’ve just about gotten used to having EDS and now this!!! Having looked up Chiari 0 it makes complete sense. I was able to compare my MRI to this https://www.youtube.com/watch?v=-e-9rdpTXAo. It is so similar. I always get this feeling of pressure in my head too. When the pain is worse the pressure is worse. Also I’ve fallen a few times, made my already constantly dislocated wrist worse in one fall, bladder issues, temperature problems, the list could go on for a while. But lots of things make sense to me now. Have you found that symptoms have changed over time, since it’s been left untreated? Have you found any way of getting any relief? Do you use a collar.
Thanks for pointing it out and for your Echo, I’ve only had a few hours sleep in the last few days so my brain is not firing. Hope you get some help soon. Are you in the UK?
Sean