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 08-13-2018, 12:03 PM #1
annabanana123 annabanana123 is offline
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I am newly diagnosed and trying to find recommended treatment plans to stop the spread of CRPS. I've read in several places that if you catch it in the first year you can acheive remission but none are really clear in exactly how to do this. Has anyone here been able to accomplish this and what did you do? What kinds of regimens are you all on today? My pain management doctor has suggested a few different combinations and I'm trying to weigh pros and cons prior to my appt next week. If it makes a difference my CRPS is in my lower right leg, below the knee.
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Old 08-14-2018, 10:32 AM #2
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Stop icing as soon as possible. Ice makes CRPS worse for most people and has been known to speed up the progress of the syndrome.

I have noticed massive symptom changes since switching to an anti-inflammatory diet. A couple versions of this exist online. I went through an integrative GI repair program.

I have heard of lumbar spinal injections being used to induce remission within the first year, but it did not work for me.

There is also a tightrope between not moving the area enough and moving it too much. Listen to your body on that. If I'm not able to do moderate exercise several times a week the sharp pains always come back, but if I do too much it's also real bad.
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Old 08-20-2018, 11:38 AM #3
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A good rehab program by a PT experienced in CRPS can work wonders, especially early after the CRPS begins. Lots of work with desensitization and gently moving it more and more, very slowly. It has to be done only to the point of feeling it will touch something off, not to tolerance like you would normally do when working out. It is a whole different way of doing things. There's a word for it that is escaping me right now!

A sympathetic block CAN stop the spread and reduce symptoms, but it isn't magic and it works for some and not others.
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Old 08-20-2018, 02:10 PM #4
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Quote:
Originally Posted by annabanana123 View Post
I am newly diagnosed and trying to find recommended treatment plans to stop the spread of CRPS. I've read in several places that if you catch it in the first year you can acheive remission but none are really clear in exactly how to do this. Has anyone here been able to accomplish this and what did you do? What kinds of regimens are you all on today? My pain management doctor has suggested a few different combinations and I'm trying to weigh pros and cons prior to my appt next week. If it makes a difference my CRPS is in my lower right leg, below the knee.
Try low dose naltrexone. Investigate bone infusions, neridrondate or pamidrondate, aqua PT. Mirror work. Desensitization. Checkout the site by Micheal Moskewitz Neuroplastix.
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Old 08-21-2018, 08:59 AM #5
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Try low dose naltrexone. Investigate bone infusions, neridrondate or pamidrondate, aqua PT. Mirror work. Desensitization. Checkout the site by Micheal Moskewitz Neuroplastix.
Thanks all!! I saw my pain management doctor today to begin treatment for the CRPS. We are going to start with aqua therapy and desensitization as well as mirror therapy to see if it helps. She also switched up my medications. They now have me on zipsor (diclofenac potassium) and hydrocodone. We will start Lyrica or Gabapentin at my next appointment if this isn't enough relief. Since I'm only 3 months in she is hopeful the therapy may do the trick but we'll see. We did discover my body doesn't process codeine so that's why tylenol 3 wasn't really effective.

Fingers crossed, I'm just starting down this long road...
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Old 08-29-2018, 11:20 AM #6
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Quote:
Originally Posted by annabanana123 View Post
Thanks all!! I saw my pain management doctor today to begin treatment for the CRPS. We are going to start with aqua therapy and desensitization as well as mirror therapy to see if it helps. She also switched up my medications. They now have me on zipsor (diclofenac potassium) and hydrocodone. We will start Lyrica or Gabapentin at my next appointment if this isn't enough relief. Since I'm only 3 months in she is hopeful the therapy may do the trick but we'll see. We did discover my body doesn't process codeine so that's why tylenol 3 wasn't really effective.

Fingers crossed, I'm just starting down this long road...
Hang in there. I myself am on Neurontin (Gabapentin) & buprenorphine pain patches (+ sublingual buprenorphine) since 2004; I have chronic CRPS (both legs), which means it's never ever going to leave me. Oh well, it is what it is. This September I will have this 23 years, since the age of 23.
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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