I hope the new med increase and the panlor helps.
I saw my lupus doctor yesterday and he increased my steroids. He says if that doesn't help let him know. The steroid increase was in case this is caused by lupus inflammation as opposed to the chiari. He also prescribed me a new (well new to me) pain med called panlor.
Thank you very much. I'm seeing my rheumatologist tomorrow so maybe he can figure it out.
Is there any way you can contact your doc/ doc's nurse about this?
Do you think you were having "Chiari headaches"?
Is there a possiblity your wheelchair could've aggrivated your arm and shoulder?
I'm sorry I can't be of help. I know this is painful and frustrating. I thought perhapse offering a few questions might be of help.
Fwiw, here's my background: I don't know much about lupus; however, I do have Chiari I with syringomyelia and Ehlers Danlos Syndrom issues. The nerve damage I have in my right upper body can affect me a lot like you're describing. For me any or all of the following: increased CSF pressure, hormones, being in a bad postural position, the weather, and stress: kick off realy bad symptoms. I wind up taking anti inflamitories and using my splints 'till things calmn down.
I hope things settle down quickly for you and you're able to find out what's going on.