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 07-26-2009, 10:04 AM #1
Checkmate Checkmate is offline
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I have been recently diagnosed with crps. I had been dieting and had lost over 60 pounds be a combination of exercise and lowering caloric intake. My question is, when I walk for more than a mile and a half my back flares up, that is the site of my crps, starts burning and hurting. The site has also mirrored to the other side of my back. Will exercise make this condition worse, assuming I can handle the pain that it causes, or should I take the pain as an indication that I am aggrevating it and should stop?

Thanks all for any help with this, because I really want to continue with my weight loss.
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Old 07-26-2009, 10:55 AM #2
loretta loretta is offline
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Hi Checkmate and Welcome!
Wow, 60 lbs-that's great. Exercise is good for us, unless it has negative consequences. Sounds like walking mile and half does. Could you try half a mile and see what happens? Swimming for most of us is the ultimate. It's easy on the body and we can stay longer in the water. The water needs to be 86 degrees. The local YMCA can be an inexpensive way to go. Or some health clubs that are inexpensive, have water stretching classes etc. Their pool I think is usually around 85 degrees-up.
This is a critical time for you, sounds like you might be spreading? You want to keep
your symptoms down. Are you on a treatment program,meds? Stretching is good, physical therapy by someone knowledgeable of RSd is usually good. I kept my mobility because of it along with massage therapy. I do have one crippled limb, my left hand, was misdiagnosed and didn't get physical therapy soon enough/
If you are diagnosed within 6 months from injury, you have a better chance of remission. There is no cure. Desensitization is very important.
One point you won't like, some of the meds we use cause weight gain. And then less activity doesn't help.
Listen to you body, and ask your Dr. if he/she has experience with RSD.
You 'll find lots of support here. I'd encourage you to read read read older posts and current posts. Also RSDSA is the national organization that has good information On their website, they have a place for you to put in your zipcode, and they will give you a name a contact phone number. You can get support by these meeting and learn who in town has knowledge, Dr. wise. Also rscrx.com is a good site. Dr. Hooshmand is retired, but site is still up. The part called puzzles has 140 questions form patients and Dr. answers..
Hope the best for you, loretta I'm 61 have full body-14 years. Wasn't diagnosed for 4 years.
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Old 07-26-2009, 11:08 AM #3
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Quote:
Originally Posted by loretta View Post
Hi Checkmate and Welcome!
Wow, 60 lbs-that's great. Exercise is good for us, unless it has negative consequences. Sounds like walking mile and half does. Could you try half a mile and see what happens? Swimming for most of us is the ultimate. It's easy on the body and we can stay longer in the water. The water needs to be 86 degrees. The local YMCA can be an inexpensive way to go. Or some health clubs that are inexpensive, have water stretching classes etc. Their pool I think is usually around 85 degrees-up.
This is a critical time for you, sounds like you might be spreading? You want to keep
your symptoms down. Are you on a treatment program,meds? Stretching is good, physical therapy by someone knowledgeable of RSd is usually good. I kept my mobility because of it along with massage therapy. I do have one crippled limb, my left hand, was misdiagnosed and didn't get physical therapy soon enough/
If you are diagnosed within 6 months from injury, you have a better chance of remission. There is no cure. Desensitization is very important.
One point you won't like, some of the meds we use cause weight gain. And then less activity doesn't help.
Listen to you body, and ask your Dr. if he/she has experience with RSD.
You 'll find lots of support here. I'd encourage you to read read read older posts and current posts. Also RSDSA is the national organization that has good information On their website, they have a place for you to put in your zipcode, and they will give you a name a contact phone number. You can get support by these meeting and learn who in town has knowledge, Dr. wise. Also rscrx.com is a good site. Dr. Hooshmand is retired, but site is still up. The part called puzzles has 140 questions form patients and Dr. answers..
Hope the best for you, loretta I'm 61 have full body-14 years. Wasn't diagnosed for 4 years.
I am taking Soma to help me sleep and am taking Celebrex. I was diagnosed by my primary care doctor and have yet to see a pain management doctor or a neurologist. I go back to my doctor Monday, and I want to get with him to start a mulitdisciplinary approach to this, ie... neurologist, pain management doctor, physical therapist, and pyschologist. As of yet my symtoms are not that bad, but they are progressing.

thanks for your response.
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Old 07-26-2009, 11:36 AM #4
daniella daniella is offline
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Hi welcome and good job on the weight and diet. I think we are all different so of course follow your own body and advice of team. I have been told for my condition to do as much as I can. Now a problem for me is I can't do long periods so it is better if I were to break it up. So if you want to do more can you spread it through the day? Also maybe some different types of activity if able. I often don't know when to push feel pain but then it settles down or push feel pain and oh my am in flare up for a long time. I think sometimes it is trial and error and sometimes when you make progress through this it can change
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Old 07-26-2009, 11:40 AM #5
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Thanks. I am breaking it up. I use to walk 3 miles. Now I am down to 2 miles. I think your suggestion of doing it for shorter periods more often is probably the route I will have to take, the thing is i do most of my exercising at work, so I can't be taking a shower 4 or 5 times. I suppose I will need to start walking more at home so I can do it more often with shorter durations.
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Old 07-26-2009, 01:13 PM #6
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Hey Checkmate
From my experience,and everyone is different,,what works for one ,doesnt for another,,,,,,exercise will cause flare up,,ussually after the workout,,but physical activity has proven and is encouraged to push back the damage caused by rsd and to keep it from spreading like fire,,and it is hoped,,,to even throw it into a remission,,,,,,,,my advice is to keep moving,,,dont over do it,, every other day go a few feet more,,swimming is great,,i aqua jog,,the first week i had agravated it so bad every day ,,i had bad flares every evening,,,but now they are reverseing,, so what im saying is the more your body gets used to the movement,,im haveing less flares now,but at first they were terrible until my body ajusted,,,,,keep moving ,,and please keep praying,,,,,,,,,bobber
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Old 07-26-2009, 01:26 PM #7
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Hello,

My PT used to tell me not to ****-off my nervous system. If I came in as a 6 (in a 0-10 pain scale) don't go past 8. If I woke up an 8, don't exercise at all.
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Old 07-26-2009, 03:59 PM #8
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Hi Checkmate,
Congratulations on the weight loss...I know how hard it is to wage the battle of weight gain..Did you only reduce caloric intake or did you eat in a modified way as well?

Your question is one that puzzles me also. if I walk it hurts...a lot! If I don't walk, I will eventually lose even more muscle mass and even the use of my foot..
So where do you draw the line of too much pain?
If I walk to the point of a lot of pain, will this cause spread, OR will it retrain my brain into realizing that I can walk and therefore flip the pain signal switch to OFF !!

Youmight consider an excercise bike (if you don't already have one)...I get on the bike for 5 minute intervals sporadically when I can and try and get littles 'hits' of excercise that way..
Too much starts to cause the infamous 'burn' pain....
RSD is sooo unpredictable..
I hope you can continue to walk, even at a reduced level, as it is so good for the psyche as well !
Hope4thebest
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