Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-04-2009, 09:18 PM #1
hopeful Alaskan hopeful Alaskan is offline
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Hi Everyone,
I just joined and typed my message on the newby form so I don't know if it automaticly comes here? Anyone know if it will be sent to this group? I have RSD, primarily of the face, jaw and head, but the hands and feet have symptoms. I have dental problems and I thought I read somwhere that RSD can do that. My face is sensitive to cold and breezes (even fairly gently ones), and I live in Alaska! I was rearend by a school bus 11 years ago and have had back and neck surgery. I am now thinking about trying prolotherapy for my SI joints because they are shot. I wear a TENs all day and am glad I have it. I also get some help with lidocaine patches (you can cut them and put them whereever you need them! Handy. The TMJ is worsening, thoughts anyone? (I have a great bite splint). I also have hepatitis C (transfusion in 1982). I have a sweet hubby, two sons and a grandson (yes I love him to pieces!). I have gone back to school, hope I can make it through. Gotta run.
Hopeful Alaskan
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Old 06-04-2009, 11:33 PM #2
loretta loretta is offline
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Originally Posted by hopeful Alaskan View Post
Hi Everyone,
I just joined and typed my message on the newby form so I don't know if it automaticly comes here? Anyone know if it will be sent to this group? I have RSD, primarily of the face, jaw and head, but the hands and feet have symptoms. I have dental problems and I thought I read somwhere that RSD can do that. My face is sensitive to cold and breezes (even fairly gently ones), and I live in Alaska! I was rearend by a school bus 11 years ago and have had back and neck surgery. I am now thinking about trying prolotherapy for my SI joints because they are shot. I wear a TENs all day and am glad I have it. I also get some help with lidocaine patches (you can cut them and put them whereever you need them! Handy. The TMJ is worsening, thoughts anyone? (I have a great bite splint). I also have hepatitis C (transfusion in 1982). I have a sweet hubby, two sons and a grandson (yes I love him to pieces!). I have gone back to school, hope I can make it through. Gotta run.
Hopeful Alaskan
Hi Hopeful Alaskan and Welcome to neurotalk! Yes, you did get to the RSD forum. You did WELL! I'm very sorry you have RSD, but glad you found this wonderful group of friends that are so compassionate, kind, and always ready to listen on your really bad days and your better days. There is so much wonderful information, just READ READ READ. No question is unimportant.
I have had RSD 13 years following breast surgery-benign. But wasn't diagnosed for 4 years. It's now full body or generalized and internal. Some of us get the red dot,bumps, rashes, itchy, red dots later turn to like little brownish grayish moles. I have involvement in my face, head, ears too, but not my mouth. The dentist gives my antibiocs the day of visit and I use Nitrous oxide mask. Have the tens unit too. I went thru a lot of physical therapy and no longer have the sensitivity to skin by wind, clothing etc.
I have never heard of the prolotherapy? What is it?
My Dr. here in Arizona is building two clinics with HBOT chambers and I am going to try that. I swim and am mobile because of it. It reversed my curling toes. Have one crippled hand, the fingers for half frozen. Was misdiagnosed and didn't get in therapy soon enough, but am grateful I have partial use of it.
Hope your schooling goes well. What is your goal? I'm pretty disabled as far as work goes. I really miss it. We own a coffee service business and I used to meet with new clients and get new accounts.
Take care and wish you the best. Your friend, loretta
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Old 06-06-2009, 11:49 AM #3
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Welcome to the forum.
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 06-06-2009, 05:09 PM #4
daniella daniella is offline
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Hi. Welcome and I am sorry about your pain and health. I am not sure how your care over in Alaska is but have you found a doctor to help you with pain control? Are you on any meds also? I have heard of others with dental problems. I am not sure but I do know for me I seem to get a lot of infections since this that don't go away. I am very sensitive to cold and a breeze feels like a gun shot to my leg and also it makes my eyes hurt so bad from my eye condition. I am sorry I wish I had more direction for you but welcome.
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