Living with RSDThis section is a place to share stories about Living with RSD Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation. You may also Help others by sharing your story. To quickly access health information from your website's browser, download Living with facial RSD 
I too have facial RSD. My came about after nose surgery. I broke my nose in two places and required surgery. After surgery, my forehead was extremely swollen and I could not move my right eyebrow. I was in excruciating pain for years. I kept going back to the doctor after the surgery, but he told me everything was fine, that it would take time to heal. That was the beginning of my nightmare. Since then, I have seen many neurologists, endocrinologists, rheumetologists, dermatologists, you name it, I saw them, trying to find what was going on with my face. For along time, I could not even brush my hair or have wind on my face, even wash my face, everything was so sensitive. I was pretty much bed ridden with ice packs on my face for about 1 year. Finally a new family doctor prescribed Elavil, which helped with the pain. I take a small dose 25 mg at night, it helps me sleep and helps with the pain. It was a Godsend and I am very greatful it has helped. The only bad thing is my face seems to be falling apart. Everytime I have an episode (a bad pain period, usually 3-4 days in a row) another piece of bone in my face disenigrates. I get bumps on my face during these periods and they are very painful, you cannot even touch them. It feels all my nerves are bundled inside of them. Unfortunately my face now sags, my eyebrows droop and I look totally different. I have tried facial creams, exercises, etc. but nothing helps. My cheekbones are now non-existant and I have TMJ. My jawbones are thinning as well. I take 1000 units of D3 and calcium each day to help with the bone loss. Although the pain is much better, the consequences of bone loss continues in my face. Since I am not menopausal, I cannot take Boniva or the like. I continue to go out in public and try to put this behind me. But it is true, people judge you on how you look. I once was an attractive female and people would smile and talk to me. Now I have to start the conversations, and I don’t get the smiles and looks from passerbys anymore. Thank God I have a loving supportive husband and children. And I thank God I am no longer lying in bed. I know there is no cure, but prayer does alot of healing. I pray for all of you who are going through this aweful disease and pray for a cure. If anyone elso has facial RSD I would love to hear from you. God Bless
March 2009
|
|
Archives:
The submissions from our site visitors do not reflect the opinion of Healthcommunities.com, Inc. (HC). The Content of HC's sites is intended for informational and educational purposes only, and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. HC does not provide medical advice. Never disregard professional medical advice or delay seeking it because of something you've read on an HC website. Always seek the advice of your physician or other qualified health care provider regarding any medical question or condition. (See also: Website Disclaimer) |
email this
