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 02-16-2011, 04:54 PM #11
Millerprof Millerprof is offline
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Thank you all for your encouragement and kind words. Since I've been through RSD, I've been pushing my daughter to use her foot as much as possible, massaging it for her, having her rub it along different textured floors, doing Epsom salt baths, picking up a towel with her foot, putting my TENS unit on her, etc. I think I'll try to get her into the pain clinic that I went to--they were really great with helping me recover and they have a warm pool for pool therapy. I'll try to keep you all posted.
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Old 02-16-2011, 08:23 PM #12
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Originally Posted by RNcrps2 View Post
Millerprof, I went thru the same worry in the fall. My daughter, playing soccer, in the fall had sprained her ankle and the Dr. said it is so bad we are going to cast her for 2 weeks and i was like no way! He thought i was nuts but i asked what other options and she ended up with a camboot. I was so paranoid everytime she complained. It did take a while to heal and thank heavens it healed with no lasting problems. Hopefully your daughter will be the same. I think since we have RSD we are much more cautious of just casting. How is your RSD? momof4
My RSD is in remission. I had it 4 years ago; it took me 1 1/2 years to put it in remission. I'm so relieved, but at the same time I would rather it be me than my daughter. But I'm hopeful that if I could beat back the beast maybe she'll be able to, also.
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Old 03-12-2011, 01:46 PM #13
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Just thought I would update everyone on how my daughter is doing. I took her about 2 weeks ago to the first pain doc I saw when I had RSD. Now I am reminded why I didn't like him much. He actually suggested I have her foot casted and have her stay off it for another month. He wanted to refer her to an orthopeadist that he had referred me to when I had RSD that wanted to do ligament reconstruction on my foot (when all I wanted was to get my screws out). I decided that clinic was NOT going to be the place for my daughter! I was NOT going to cast it. His advice was so counter-productive--my daughter hearing she shouldn't walk on it. UGH.

I started calling around some more. Called another pain doc that I loved working with, but he's just very busy and always has a wait list. I asked about a referral for my daughter, and I heard back from his nurse--he recommended taking her to Children's Hospital Pain Program in MPLS. I called them up and at first they said they had a 3 month wait. I told them the probable diagnosis and they got her in within 2 days to meet with the whole team--the doctor, nurse, psychologist, physical therapist, and social worker. They gave her the CRPS diagnosis and explained in kid terms what was happening and why she needed to use her foot even though it hurt for now. They taught her self-hypnosis, deep breathing, relaxation skills and even introduced her to aroma-therapy. They made her start using her foot then and there--told us they wanted to boot and crutches gone ASAP. The psychologist met with her for a bit. We were at the appointment for about 4 hours, but it was so worthwhile. We got on a plane the next day for a trip to AZ; this weather is also very healing. She has been walking on her foot using the Lidoderm patches they prescribed. She has barely used her crutches here--only in the morning when she's having a flare. The color in her foot is looking much better and she's not complaining of the pain nearly as much. The doctor's had reassured me that she would probably get better pretty quickly (compared to me taking a year and a half). I am so happy to see her walking again. I really think she'll be okay.
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fmichael (03-12-2011), kathy d (03-14-2011)
Old 03-12-2011, 05:21 PM #14
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I know someone who had great success in Boston...Her son is now playing football again! I can put you in touch with her if you want-
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Old 03-12-2011, 06:27 PM #15
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Quote:
Originally Posted by Millerprof View Post
Called another pain doc that I loved working with, but he's just very busy and always has a wait list. I asked about a referral for my daughter, and I heard back from his nurse--he recommended taking her to ? I called them up and at first they said they had a 3 month wait. I told them the probable diagnosis and they got her in within 2 days to meet with the whole team--the doctor, nurse, psychologist, physical therapist, and social worker. They gave her the CRPS diagnosis and explained in kid terms what was happening and why she needed to use her foot even though it hurt for now. They taught her self-hypnosis, deep breathing, relaxation skills and even introduced her to aroma-therapy. They made her start using her foot then and there--told us they wanted to boot and crutches gone ASAP. The psychologist met with her for a bit. We were at the appointment for about 4 hours, but it was so worthwhile.
Congradulations!!! And did everyone in the Upper Midwest catch that name?
Children's Hospital Pain Program in MPLS
.

Mike
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Old 03-12-2011, 08:32 PM #16
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Congradulations!!! And did everyone in the Upper Midwest catch that name?
Children's Hospital Pain Program in MPLS
.

Mike
Thanks, Mike. They were just fabulous!
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