Rhonda, I had this before my Sjs diagnosis, but after thought it was due to it. I can remember sitting in a hard chair (like they have in schools) and listening to our President's speech one day for about 45 minutes. Not really that long. I got up and went out the door (right by my seat) and had to go up two flights of stairs. Well, my legs were wobbly and feeling really weak--thank god I had the railing to hand on to. Everyone else from the auditorium was trying to knock me down to get up the stairs first. I didn't think about this much for awhile and maybe I didn't have it. But then it started again and i've had it since before my dx. If I'm riding in the car, I have to stand for 3 or 4 minutes for my legs to catch up. Sometimes I will throw my husband under the bus because he always forgets this. I can walk a mile (leisurely) so it's not muscle stress.
I have my rheumy trying to get some answers out of her. I am afraid to go almost anywhere alone. Rheum thought it might be small fiber neuropathy. I see her in less than two weeks and I will ask to be ref'd to a different doc for that. I'm notsure what kind of dr would do skin/muscle biopsies. This is getting worse, but as I said after I'm warmed up, I can walk a mile at least. So how can it be lack of exercise, or it's mostly after I'm sitting and stand up?
I really doubt its from lack of exercise,, a neuro would do the punch biopsy to look for SFN,, one lab in the country to send it too,, Therapath,, I know becasue I got a bill from them for a punch biopsy that I had way back in feb of 09,, insurance still refuses to pay,, if you have cold sensations in your legs,, or hot sensations,, trouble with clothese rubbing against them,, feet burning,,, this is all reltated to neuropathys,,
my feet burn constantly,, legs burn,, cant wear jeans anymore,, the cloth feels like sandpaper,, trouble standing,, prob from fet burning,, now its in my arms and hands,, so much for my life,,