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 04-10-2007, 09:42 AM #1
nubythedog nubythedog is offline
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Chat Nuby needs some advice for girlfriend

Hi there! I'm writing to you today as the boyfriend of someone that has a diagnosis of RSD. Her diagnosis was given when she was 15. That was 12 years ago. Her pain is centralized to her right ankle/instep of her foot. She's had a few surgeries over the years...mostly exploratory and they didn't help. For the past 10 years or so, she has been forced to walk on crutches and uses a walking cast/boot to cushion her foot. Needless to say, she's sick of the crutches, not to mention the other damage that is being done to her body by not having full weight on that leg for 10 years. She now has arthritic pain in her hands and wrists due the crutches. She's been on about every pain killer and neuro drug that is usually thrown at RSD patients. Nothing helps. We live in NC, and she's been to the pain clinics at Duke and UNC, as well as a pain clinic in Asheville and Charlotte. For most of that time, she's been seeing a guy at UNC who pretty much isn't doing anything for her except filling her presciptions for pain killers and boots.

So that's the brief history. I've been dating her for about a year now and I see what she goes through day to day. After 10 years of this crap, I'm fairly confident that she is resigned to having this condition for the rest of her life. From what I've heard her tell me and from my own reading, it sounds like that's about all she can do. My question for this forum is...is there something else, something new that she can try? Anything that could get her off the crutches at least? She's going to have so many other complications from the crutches later in life due to bone loss and muscle issues. She's told me that if somebody would just cut off her foot she'd be happy to have a prosthetic. But, no doctor will do that. She has had an epidural to see if that electronic pain blocking thingy would work for her, but alas the test came back negative. Any other advice you guys can share would be great! Also, if anybody want to have a ton of right only shoes, I've got a great source for you. She wears size 7 1/2 to 8
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Old 04-10-2007, 12:26 PM #2
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Hi there!

Welcome to the forum! That suggestion about the spare shoes isn't as daft as it might appear - not at all impossible that someone may want to swap the lefts and rights...why ever not??!!

I'm not usually an advocate of major PT beyond what's essential (sometimes it is necessary, of course), but it does sound to me as if your girlfriend could benefit from some gentle long-term PT exercises to do at home, after an initial assessment and course of treatment. It almost sounds like her body has forgotten how to walk, and even if that's really not possible, the therapists may well be able to help with better ways of handling crutches and sticks, and show her ways to put less stress on the body in general.

No, there's no magic wand in any of this, more's the pity. If only....

My RSD is in my left hand/arm, but we have very many forum members with foot/leg RSD, and I'm sure they'll be able to advise you better than I can.

You've come to the right place, anyway....lots of people here with waaaay too much experience of this condition .

Hope we can be of some help,
All the best
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Old 04-10-2007, 06:04 PM #3
used to be used to be is offline
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Hi ...it is so nice of you to try and help your girlfriend . I hope you will find some answers here. I have rsd in my left foot. knee and upper leg. I used a boot for a year along with a cane. When the dr realized that I wasn't going to get better, he ordered a custom made leg brace called a molded AFO. It is a plastic brace that fits inside a regular shoe. It took a while to get used to but it is very helpful and my balance is better than with the boot. I use it along with the cane. But, like you said, the cane or crutches do cause problems with your arms and hands. So, what I've recently done is purchased a mobility scooter that is portable so I can take it with me and be independent. I had mixed feelings about using it at first but now I LOVE IT. It gives me a break from the pain and the struggle of walking as well as giving my arm a rest. Perhaps this might be something worth looking into. It is nice to have something that brings a little relief. Hope this helps...take care.
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Old 04-10-2007, 06:52 PM #4
Diamond Lil Diamond Lil is offline
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Hello: Welcome to the forum. It is really considerate of you to look for help for your girlfriend.

I have worn a calf length molded AFO in my shoe for 8 1/2 years. Recently, I went to a new doctor who ordered PT and a new AFO that has a hinge at the ankle. With the help of the physical therapy and the new type of AFO, I am able to walk some, albeit not very far, without using my cane. It may not be too late to try something new to help you girlfriend walk without crutches. I would think graduating to a cane would be a step forward. With lots of luck and hard work, maybe she will eventually be able to walk on her own.

Your lady friend is so fortunate to have such a caring boyfriend. Good luck to both of you. Regards, Lil
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