I had a day from utter hell, which I will write of in my locked diary as soon as I get a chance. For now, I wanted to say that I finally got diagnosed. The rheumatologist says I likely have joint hypermobility syndrome, but what I've read a lot of is that that is the same as ehler's danlos syndrome. The symptoms are the same, the pain is the same, the treatment is the same: Doing what causes me pain is the main treatment.

I will have to start physical therapy soon. And I need to see the cardiologist to check my heart because my blood pressure was 149/65, totally weird, last time it was checked it was fluctuating between 102/40 to 120/80 and today my heart was just racing and interfering with my ability to think or stay calm. The rheumatologist was concerned.

I also got what is going on with my spine explained to me. It sounded painful just to listen to her tell me it. Essentially my spine has eaten itself away from being hypermobile and constantly rubbing the parts of the vertebrae together, and in time it exposes all the soft tissues of the spine. When I move it does various things to the nerves in my spine, from pinching them (when I'm in such severe pain I can't get comfy no matter what), to messing with them in various ways that causes all I'm going through - radiating pain, numbness, and tingly pain.

She also said that if it feels like bone hitting bone, in my body that means it is.

I am already hurting from having to demonstrate my hypermobility in order to be diagnosed and from getting the worst van rides in history of bumpy rides.

Not much of this is anything I didn't suspect. But it was good to finally be heard and have my pain validated.

night night

~e