In March 2003 I had bi-lateral knee replacements. I was of course on many pain medications while in the hospital. I spent two weeks there. Three days in intensive care and then they removed the epidural that was controlling the pain. I noticed my feet were icy cold. I told one of the nurses that I couldn't get them warm. I had them wrapped in a sheet and blanket. The rest of me felt normal. The icy feet thing continued for awhile, even until I returned home. Once home and moving again, doing normal things, the cold feet stayed. I decided it was time to detox from all the meds that I had been on for pain before the surgery and also after the surgery. A lot of medication! I started it by myself, cold turkey. After a week of agony and misery, I decided I needed some help getting the rest of the way. So I checked myself into the local drug rehab clinic and let them help me detox the rest of the way. It took about three days. They said I'd done the hard stuff myself. During all of this my feet stayed icy.

About a week later, my feet changed one day from icy to burning and sweating. They sweated so badly that my shoes squished when I walked. And burn...oh lordy how they burned! At that point I told my PCP about it. He said well lets run some tests. After the tests he told me I had idiopathic PN. About a week of this and I said to my husband, "the only thing that is idiopathic is that idiot doctor." I contacted a neuro. I went thru 4 neuro's. I developed dry eyes during this period. Finally a small town country doctor in a town 60 miles away put it all together. Dry eyes, dry mouth, neuropathy ...voila!!!...Sjogren's Syndrome. Then he retired and I was stuck with the locals who didn't understand that Sjogren's affects the nervous system sometimes. They said it was only dry mouth and dry eyes. A nuisance disease! I pushed it all the way and went to Mayo Clinic in Rochester Minn this past Dec.

They diagnosed is as small fiber sensory neuropathy caused by Sjogren's Syndrome. They understood. Now my neurologist here follows guidelines set up by Mayo for me. That's my story and I'm sticking to it.

Billye