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 07-17-2007, 09:26 AM #1
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Default Do any of you do any exercises?

I try to do some exercises to keep myself going. Another thing with me I am so hyper I can't sit still no matter what.

I have taken walks for years and now my heels are messed up. I went to my Dr. yesterday evening and he said that my problem was my tendons that run down to my heels and feet are tight. Years ago I was told by my foot Dr. that they were too short. So apparently that's what is going on with my heels. He showed me some stretching exercise to try and calm them down.

As far as my finger, he taped it with some duoderm tape. He said that he thinks I tore some fiberous tissues in my hand where that finger meets. This was done while I was trying to do exercises also.

I was just wondering if any of you do exercises, what kind and are you able to do any?

It doesn't matter what I try to do I put myself in worse shape then I am.

He wants me to try water arobeics but with my luck, I'd drown.

I haven't heard anyone talk about exercises on here and I do realize a lot of you can't do any but was wondering if any of you try to.

Ada
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Old 07-17-2007, 09:43 AM #2
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hi ada,
i do stretching every morning and crunches to strengthen my abs for my back problem. i also do stretch my ankle areas. i have to, they get so tight. i found any strenuous exercise makes things worse, but those that keep me limber and strengthen my back are okay.
so, i guess, go easy but do something! ha! joan
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Old 07-17-2007, 09:46 AM #3
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Hi Ada, Sorry you're having such a time of it. To answer your question, I exercise almost every day. I do it in the hopes that the RSD won't get any worse than it is. My RSD has pretty much destroyed my left leg but I still make myself use it because I know that if I don't I'll lose the little mobility that I have. I have an exercise bike and a threadmill that I use when the weather is bad. I make myself go for a short walk every day with my leg brace and cane. I also try every day to walk around the house without the cane and brace. This is very hard so I don't do it for very long. I did try water therapy and it is great. You can get more done when you're in the water. But the only places around here that offer water therapy are the P.T.'S and it is not affordable. It's important that the water be warm and most public pools keep their water cool. A good therapist or chiropractor might be able to give you an idea of what might work for you as far as exercise is concerned. Hope you find something that helps. Jeannie
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Old 07-17-2007, 10:41 AM #4
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Default Thanks girls,

I was almost afraid to post this question. I know some people are so much worse off then me RSD wise.

My Dr. is determined to keep me out of a wheelchair. I just cried in his office last night. No matter what I try to do exercise wise, I make myself worse. It's been a hard month for me for some reason. I've missed Bill more this month, we are having problems with my VNS and now the other problems. He told me last night that we could turn the VNS off for awhile but I am so hesitant because of not wanting him to turn it back on AT ALL.

I am going to a Drs. appt. next week and I'm going to try and find some new balance shoes. I found 3 places that carry them. I think good shoes might help with the heel problem.

Where these water arobeics are the water is cool. That worries me also but then again since I stay too hot all of the time, I don't know if it would hurt me. I'm going to check on them this evening. It is 4 blocks from here so I can walk to them.

I'm just determined to keep going and also to keep my weight down. I tend to gain if I sat still.

Thanks again for the advice.

Ada
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Old 07-17-2007, 10:46 AM #5
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I go on a nightly walk with my dad and the dog, and a mile and a half walk at the dog park on weekends. It hurts, and when I get home I almost always have to take off my shoe and sock and roll up my pants leg! But I do it anyway because it's important to get some exercise, and it's important to keep my leg moving. I also like doing it because it reminds me how incredibly well I'm doing. A few years ago, I couldn't walk around the house!

-Betsy
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Old 07-17-2007, 11:01 AM #6
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I was thinking some gentle floor stretching and movements might be good.
Something with a yoga mat for cushioning.

there used to be a book called Callanetics it was isometric excerises - which is just tensing the muscle and releasing it.

Just did a search on it and it is still around- they have DVDs and groups might be one in your area.

simple and low stress low impact.
You should be able to find it in your library
here is a link for it too-
http://www.callanetics.com/booktape.php

here's a little video about it-
http://www.mindbodysoul.tv/episodes/...n/callanetics/

the google link with the search results listed-
http://www.google.com/search?hl=en&q...=Google+Search
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Old 07-17-2007, 11:05 AM #7
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ADA, I was told by my back doctor that if i do not keep my core strength up i will also be in a wheelchair. i use a cane and brace now as it is and i am fighting to keep myself walking but like i, always everyone, have a different tolerance of what they can and cannot do. i struggle with the weight problem too, with me it is a stress reliever to eat and my therapy has done wonders for that and i am now shedding the pounds in a happy way. i do keep active too. i have the six grandsons and twins on the way and so i try to stay active with and for them. i have been in the pool this year. we have an inground pool and i have been able to teach my five year old grandson to swim the length ofthe pool without floaties so now this is the sixth grandson i have taught to swim. it is not a big deal to most people but to me it is huge that i can do it. my goal is to keep my back strong and be able to hold and carry the twins when they arrive.
now i am going to the sonogram today with my daughter to see the little ones and hopefully see if we have boys or girls or one of each! so we each have to have something to live for and keep us going and get through the pain and if we have to take off our shoes and roll up our pants ant the end of the day like Betsy, i say, so what! we did it! we made it through another day!! yeah us!!!! joan
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Old 07-17-2007, 11:06 AM #8
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Dear Ada, Please don't ever be afraid to ask a question. The fact that some of us are more severely impacted by this condition does not in any way diminish what you are going through. As for the cooler water please be careful. I tried a public pool with cooler water and I was miserable for the rest of the day. So, if you are going to try it ,may I suggest just going in for a few minutes the first time. If you do O.K. then perhaps you could gradually increase your time. Hope this helps.....Jeannie
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Old 07-17-2007, 11:52 AM #9
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my library system website came up with a good listing of DVDs/videos and books.

I used the search terms "exercises for arthritis" thinking those would be very gentle.
here's the site with the list {your local library should have many of the same items}
http://www.wilinet.wccls.lib.or.us/p...&query=&page=0
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Old 07-17-2007, 12:39 PM #10
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ada,

i haven't been on much lately but i have to answer this.....i've been doing aquatic therapy for about 2 months now and i absolutely adore it....i practically had to beat the pain doc over the head with a chair to get the scrip for PT......he's big on drugs and blocks, neither of which have helped me, but has a very negative view of PT.

i'm going to an indoor pool where they do LOTS of PT (3 therapists on staff) and the people who work there r very knowledgeable about rsd.....the pool is heated and usually kept between 88 and 90 degrees, which i can tolerate for about 75 minutes...if i stay in longer than that, i start having muscle spasms in my legs.

since none of the docs seem too sure exactly what's wrong with my feet, the PT is directed at strengthening my legs and feet and improving my balance.....(the therapists think that whether it's rsd spread, peripheral neuropathy, or polyneuropathy, doesn't matter - it's still possible to improve strength and balance).

i still have to use the cane sometimes, especially in a noisy situation - noise destroys my position sense - but my balance is slowly improving and my feet r not as painful as they were 2 months ago.

much of my normal routine in the water involves walking....forward, sideways, 'marching', and backward walking which i can't do yet....also several stretches since my ankle and calf muscles r very tight and weak from not being used.

the best part of the whole thing, tho, as far as i'm concerned is that i feel very safe doing all the exercises.....if i fall, the worst thing that can happen is that i get my hair wet!....since i had some rather spectacular wipe-outs before i started using the cane, i don't consider wet hair much of a problem.

also, the pain diminishes tremendously while i'm in the water...even my left arm, which is my worst spot....yes, the pain comes back, but it's just amazing to have any break from it.

right now, i'm going to the pool for PT twice a week and 2 or 3 other times per week as a 'fitness' member.......since i have almost 2 years before i qualify for the 'senior' fitness rates, it's a bit expensive ($55 a month) but, as my hubby pointed out, we're not paying the deductible or co-pay on Rx's and procedures that accomplish nothing, so we'll manage.

i really think u want to be very cautious about water temps....one day when they were having problems with the heater at the pool, the temp dropped to 82, and i didn't last 20 minutes before i started having muscle spasms (and i don't normally have a problem with spasms).

and for ONCE, the side effects of the treatment r working in my favor: i've lost 7 pounds and i'm a sleeping a little better at night!

i hope u can find soemthing that will work for u.

liz
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