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 06-23-2015, 09:33 AM #11
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Originally Posted by NurseKris View Post
One of my doctors recommended buckets of rice. The weight was too much for my feet but I put some into a shallow dish (it was disposable from the dollar store) and kinda slide my feet back and forth over the rice. It took some time to work up to the rice.

I started with cotton balls then went to a silk tie. I took baby steps and sometimes had to take a step or two back. I also used things like a washcloth and a shower poof/synthetic loofah. Personally I found trial and error worked best for me. Good luck!
Do you remember the protocol--amount if time, how often, results?

Thank you.
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Old 06-23-2015, 12:04 PM #12
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So do all the fabrics in the same day or progress to each fabric weekly?

Did she say to not touch the area otherwise?

How many times per day?

Thanks so much!
Each fabric one right after the other for 30 seconds (each fabric). She wants me to do that daily and then will work me up to 60 seconds. She did not mention not touching the area otherwise. I imagine any desensitization you can do beyond a few fabrics/30-60 seconds at a time would be a good thing.
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Old 06-23-2015, 12:06 PM #13
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A technique that helps me is breathing out "into" the pain and totally immersing myself in it. Over a long period of time I learned to breathe out and slowly relax into it, gradually allowing myself to feel it all. Once I felt it all, the guarding mechanism released and I started to make progress.

My spouse used to try and gently massage the affected area and I couldn't take it without hitting the roof. So I started self directed, where at least I had some control over it. Mirror therapy was a big help here. Seeing my foot in the mirror as if it were 100% normal really calmed my nervous system.
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Old 06-23-2015, 05:18 PM #14
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A technique that helps me is breathing out "into" the pain and totally immersing myself in it. Over a long period of time I learned to breathe out and slowly relax into it, gradually allowing myself to feel it all. Once I felt it all, the guarding mechanism released and I started to make progress.

My spouse used to try and gently massage the affected area and I couldn't take it without hitting the roof. So I started self directed, where at least I had some control over it. Mirror therapy was a big help here. Seeing my foot in the mirror as if it were 100% normal really calmed my nervous system.
Thank you. I have pain all over. It is painful to be touched anywhere and it is painful to wear clothes.

The pain is instant when touched, so I am not sure about any guarding mechanism.

I have been doing yoga deep breathing for several months now. I have someone from India help me with technique over skype. It helps with bad thoughts, but not with pain relief.
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Old 06-24-2015, 12:14 AM #15
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My ot suggested when spending time with my horse, I pet her using my affected hand and arm and go with and against the grain of her short summer coat. Just kinda using her fur like a brush. It's very nice because for me being around horses just standing and hanging around gives me Very good physiological feedback. Because of this I don't mind doing it and tend to ignore the extent of the bad feeling...
He suggests this to people with pets who have nerve issues and such. (I think I am his only crps patient but he seems to know about it )
If you have pets I highly suggest this! Just don't do it during and excitable time, try it when it's in a relaxed calm environment where you kinda forget what you are doing. But I am not sure how it would work if you have full body pain. but for limbs it would work out
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Old 07-08-2015, 08:09 PM #16
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The NOI group has a overall treatment program, but it's my understanding the specific protocol depends on the person. In PT, my therapist would use different fabrics, like a wash cloth, sometimes unexpectedly. In OT, I use the corn husk machine and different textures on a stick. But how long I do any of those depends on whether it's a good or bad day, how long I've been doing it, etc. The most important thing is to try to use the affected area as much as possible as normally as possible. The more normal signals the brain gets, the better. Please go at your own pace though. With my foot, it took much longer to resume normal activity than it did in my hand.
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Old 07-08-2015, 08:17 PM #17
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For me fleece soft very fine soft baby fleece worked at start, I could tolerate it for a few mins at a time, I can now 3.5 years later tolerate a sweatshirt but it has to have soft soft lining. I can tolerate touch as long I see it coming. Once I got shed to something I moved on to another soft thing. Water spray is still difficult in shower. Sometimes when something cold touches me I just wanna cry, or a unexpected touch. I flinch a lot. I stare off a lot to refocus n breathe through it.
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Old 07-08-2015, 08:37 PM #18
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I used a soft face cloth to keep the shower from directly hitting my feet at first, otherwise I screamed from pain, then I gradually rolled up the cloth, but I also lessened the force of the shower.

I used cotton balls dipped in DMSO lotion and MSM lotion. I would slowly stroke my feet and ankles while I watched TV. I suffered through Graston sessions with a PT. They were agony and I don't recommend them, but I think they helped desensitize.

I found that my sheets were too rough, so I replaced them with a finer weave. I had to give up jeans, because the weight and the feel of the fabric was unbearable. I could not wear anything restrictive, even if it was not near my feet. I had to be completely unrestricted, because anything binding on my body seemed to make me more sensitive when I was working on my feet.
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