About 11 years ago I went to NIH looking for answers. I went down with a dx of Stiffman Syndrome. I got laughed at and yelled at for wasting their time. A couple of months ago I went for EMG studies and had contractions. I asked the doc if he knew what it was. Yes,it's Stiff Person Syndrome! In early 2000 I went to Boston, Greenwich, CT, and NYC. I received three separate dx. Autonomic dysfunction, orthostatic hypotension, and small fiber neuropathy. No one put together until 2012 when a pain management doc said that I had CRPS. Medicine is imperfect and I know I have a very unique body. Just with StiffPerson Syndrome I am one in a million! I don't do well with medications. Between allergies and bad side effects, I try to stay away from as much as possible. I do better with hands on thus osteopathic manipulative medicine works for me in many ways. My spiritual life keeps joy in my life and my nurturing skills puts my attention on my husband with dementia and my four children and five grandchildren. I feel fortunate to be able to still drive and also to do some chores from my power wheel chair, keep financial things in order, and spend time in my Christian walk praising and praying. Pain is part of my life. It doesn't rule my life but once in a while when I have had it and resort to oxycodone. Getting diagnosed is not a walk in the park but when someone finally hits the nail on the head, I have found tremendous relief, even when there is no cure.

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