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 06-06-2010, 03:10 PM #11
hope4thebest hope4thebest is offline
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hope4thebest hope4thebest is offline
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HI mom of 4
I relate to your missing sittting next to the ocean's edge with your feet in the water!
As part of their wetsuits, surfers wear what are known as "booties' on their feet. They are soft and rubbery and provide insulation from the cold!
Maybe they could work for those peaceful times in a beach chair along the ocean's edge, or in pool that's less than 93 degress.

Hope4thebest xoxoxox
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RNcrps2 (06-06-2010)

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Old 06-06-2010, 11:53 PM #12
rachel's daugther rachel's daugther is offline
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rachel's daugther rachel's daugther is offline
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Quote:
Originally Posted by RNcrps2 View Post
Slowly walking forwards using a kickboard to rest arms on, then walking backwards, then walking sideways reaching arms out at sides. In the beginning I could barely walk it was too painful so i only went a short distance. If pain increases stop but if pain stays the same I continue. As I got better walking they had me walk forwards and swing my arms (as you do when you walk). They started everything slowly, 4 repititions only to make sure didn't cause a flare. With hands at sides small arm circles, shoulder rolls. I still only do 4 repititions of one arm exercise at a time. ie. 4 arm circles, walk, 4 shoulder rolls, walk backwards... Honestly I was considering using a wheel chair because walking was too painful and my toes were curling- it's been 3months of hot pool(87-91) and I am able to walk with less pain and my toes are not curling under. My shoulder was almost frozen and I now have more movement. The most important thing is for her to listen to her body- so she doesnt cause increase of pain. Best of luck. momof4
Thank you so much for your reply. She has CRPS in her LT knee, ankle and foot. We will try the what you suggested. We are doing home excerices at home now and she seems to always be in 8 or 9 pain levels. PM Doc just tells us to work through it, I'm just nervous that she is pushing to much. She has had two nerve blocks in the last month but they only worked for about 10 days each but they did bring her pain levels down to a 3 on the first one and a 5 on the second one. during that time she was able to do a lot of PT. Doc says she can only get one more, and will only give 3 in a six month period. She hadn't really experience these high levels of pain until now. It is just so hard for her to do the PT and be in so much pain she cant do anything for the rest of the day. Sorry I'm rambaling on, new to this site and your the first person I posted with.
Thanks again for your reply
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Old 06-07-2010, 07:19 AM #13
daniella daniella is offline
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Hi for me and of course everyone is different but I need a firm and stable ground. Sand would make my ankle/foot turn out which would cause a flare up. I can see though if there were not so many barriers how the ocean could be calming.
Rachel I am sorry about your daughters increased pain. Have you tried changing the form of PT she does? I guess I feel what mayhelp one person may not another. I know hat PT can increase pain but in the long run hopefully it helps but some pain is just too much to take. I have a friend for ex who like massage and for me that would increase my pain to a intolerable state. As for the pool at Cleveland Clinic we used those noodles and dumb bells for the pool. If I ever go back to the pool I am going to get those items and also try walking back and forth. Welcome to the board though I am sorry for your daughters pain
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