Hi everyone,
I don't have anything great to update. Seems that I have taken some steps back. I honestly thought about 2 months ago that I was getting better. My symptoms were mild and more manageable. My pain all over has flared back up and the enthesitis in my ligaments is just not quitting.
My rheumatologist wanted me to try celecoxib. I was hoping it would help at least with my foot and ankle problems but after two days it made my stomach sick and hurt so I stopped that. She is still at the point where she doesn't want to treat me for autoimmune disease despite the anti smooth muscle antibodies and the high ANA. She isn't sure that my neurologists diagnosis of Ehlers Danlos and autoimmunity is correct, so she'd rather watch and wait. I've been watching and waiting for 4 years.
As much as I like this rheumatologist because she doesn't want to "name" my cause for severe polyneuropathy with a specific syndrome, I am realizing that I am possibly in denial about having a genetic connective tissue disorder. The neuromuscular doctor told me that it is certain that I have hEDS especially due to my girls having similar symptoms. I realize that I cannot argue that something genetic is going on here. Our symptoms were all mild until what ever happened triggered "this" to spiral out of control. It is so frustrating to think that this won't heal. I had such improvement in the beginning of the summer that I thought the worst was behind me and that I didn't ever even have to know what happened or what went wrong. I was just so thankful. Now I am trying to figure out why I've taken a downturn and not be upset that I am having to take the pain meds more often. I was at the point that I was doing so well that two weeks went by and I only had to take diazepam once for a muscle spasm and half of an oxycodone after a night on my feet. I was ecstatic. Now I'm back to fighting pain and fighting the pain meds and its such a crappy cycle. Thanks for listening.