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 01-18-2010, 12:57 AM #1
loretta loretta is offline
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Join Date: Feb 2007
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loretta loretta is offline
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Join Date: Feb 2007
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Originally Posted by momw/rsdchild View Post
Hello!

My 15 year old daughter has RSD/CRPS. She was diagnosed 3 years ago at the age of 12. It is in her left leg. She is in a bad flare up right now. We just moved to Oklahoma from Texas and I am wondering if anyone has a good doc they can recommend in OK. TX is so far to go when she is in such intense pain. She has an amazing pediatric pain management doc at Children's Hospital in Dallas but it is so far to drive when she is in such pain. We are going down tomorrow to try to get her some immediate help but we will need someone in-state soon.

I have also read that some people have had good results with TENS units. I have one that I use for pelvic pain issues that I thought I could try with her if I knew where to put the leads. I don't know if I should put them on her leg where the pain is or on her low back where those nerves begin. Anyone with info or experience on this - your advice would be appreciated. It just worries me to stick those leads on her right where she hurts so bad.

Just hoping to get some support for her and myself as her mom.
Hi Mom and Daughter, I'm so sorry you are dealing with this. I was misdiagnosed for 4 years and flew a couple states away to a sports injury ortho group. 1 min. later diagnosed as rsd. He ordered a Tens unit and started my on physical therapy.
Since you are seeing the Dr. tomorrow, how about taking your tens unit with you and asking about using it on your daughter, and where to put the leads. Also this good Dr. may have the name of a Doc in Oklahoma.
I have a friend in Oklahoma with RSD and I'll ask her who she is seeing. She is a Workmans's Comp patient, so maybe not the best leads for Dr.
Younger people have the best change of remission. And the sooner from the accident, injury, or surgery the better chance for remission.
I have had this 15 years, I'm 61 years and it's full body. There was a 4 year delay from the surgery that caused the RSD and finding a Dr. who diagnosed me. They often know other rsd drs. Also go to RSDSA it's the national organization for rsd and put in your zip code and it will give you names of local Dr. Jim Broatch also knows names of rsd Drs. Also, you can find out if there is a support group near by. That would be wonderful.
If I can get a hold of my friend in Oklahoma and get a name, I'll private message you the name , town, and phone number.
For me, I also did massage therapy and water therapy and all together they have kept me mobile. I only have one hand partially incapacitated.
I'll get back with you, loretta with soft hugs
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bobber (01-19-2010), SandyS (01-21-2010)
Old 01-18-2010, 01:23 PM #2
Wilbyfree Wilbyfree is offline
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Wilbyfree Wilbyfree is offline
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Default TENS Unit

Hello, Mom/Daughter, I too am sorry you are going through a flare up. I have had RSD/Causalgia, five years. I also have the TENS Unit and wouldn’t leave home without it. I have to be careful where I put the leads, I had open fractures and multiple surgeries, so I do stay away from the scar tissue. I usually find comfort on a low pulsating level and I put the leads near the attaching muscles. A warm bath is great comfort for the pain and the tension that it produces. Also, you mentioned that you just moved, I am sure you are both going through some adjustments and unfortunately, for RSDer’s this can provoke our pain. I will keep you both in my prayers, maybe try a warm bath for yourself too and know that you are okay, this will pass. God Bless

Jeanie
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