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 11-13-2014, 07:35 PM #14
LIT LOVE LIT LOVE is offline
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LIT LOVE LIT LOVE is offline
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Join Date: Mar 2010
Posts: 2,304
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Quote:
Originally Posted by HarryDresden View Post
I'm not "cured", nor did any doctor claim the cured me. I still experience the symptoms i outline below.

0. pain/symptoms lasting longer then it should given injury.
1. discomfort while walking
2. sweating, swelling,
3. temperature difference, coloring
4. ROM loss and twitches
5. no other explanation for pain and symptoms.

Why isn't it CRPS? What else could it be? Do you know of some test that would be worth doing to find out? What basics are they overlooking?
It could certainly be some form of neuropathy, which there are several forms of and can include every symptom you've listed. In my opinion, the pain you've previously described is not unusual in it's severity or length for the type of injury you had.

My previous post was not directed at you personally but about my frustration with doctors that exaggerate their RSD/CRPS experience.


If you'd like a nice long read about diagnostic criteria of RSD/CRPS I'd recommend this:
http://www.rsds.org/pdfsall/CRPS-gui...ed-2013-PM.pdf

I can relate to having unusual symptoms that were difficult to diagnose AND years later developing RSD/CRPS. When I was 12, I had knee surgery. My foot turned ice cold immediately after, and 30 years later the temperature regulation dysfunction is still unavoidable in certain conditions. I experienced fluctuating low to occasionally severe pain in my knee for approximately 5 years. I used codeine for 2 days after the surgery, and then switched to an over the counter topical pain reliever. Running was especially problematic, but I was still able to ride horses, although it also increased my pain. And,even now, I still have periods were the pain increases for hours, days or weeks, but it's usually caused by an injury

About 15 years later, I underwent 2 surgeries on my dominant hand that were problematic. I had issues of abnormal sweating, the limb turned cold, lots of swelling, range of motion issues, etc. But, I had a torn tendon until after the second, so... After my 3rd surgery, which fixed the structural issues caused by the 2nd surgery, I developed RSD/CRPS which was obvious when I went back to physical therapy 5 days later. Unfortunately, I had switched to a new pt, who assumed I had a low pain tolerance and he had never had a RSD/CRPS patient before me. Ice was a new form of torture, and my goal was to get through it without crying. I could not work with one of the physical therapists because he either treated me too roughly or too gently--both extremes that often left me sobbing--that was because of allodynia. And then there was the burning pain that was constant, but at varying levels.

Four years into the nightmare, with insomnia, hypersensitivity to vibrations, flashing lights, and sound, I was contemplating suicide as the only real option to ending my misery. --When a light wind makes you question if you should go to the ER, things are bad. The good news was it was easy for my pt to recognize his 2nd patient with RSD/CRPS several years later--he only had 2 in 30+ years of practice before he retired.

No doctor has ever suggested I had RSD/CRPS prior to my 3rd surgery. Were there some issues of dysfunction going on? Sure. But, not the same severe sympathetic nervous system dysfunction that came after.

RSD/CRPS is a monster that often effects nearly every component of a person's life. Many of us are permanently disabled and struggle with very basic daily activities. (If you want to be inspired read through Catra's old posts and the insane lengths she has gone to keep working.)

One of the things that is the most frustrating to me is in all of the friendships I've developed with the newly diagnosed over the years--none of my advise has ever made a difference. They have all been so overwhelmed and low functioning, they've never been able to start an aggressive treatment program in the "window" of the first 6 months (or even 12 months) after diagnosis.

Of the hundreds of RSD/CRPS patients I've interacted with online, by phone, or in person, for the past 14 years, what you're describing sure doesn't seem like the same animal. Even those that can "pass" as healthy can usually only do so for short periods of time, and then they have long recovery delays to return to their pain baseline.

It's fine to research the disorder and do everything in your power to make sure it never develops, by utilizing things like high dosages of Vitamin C, using Epson salts or lotion, or using lidocaine patches, etc. (Swimming would likely help with your strength and ROM issues.) But, I would not recommend undergoing anything invasive as others have mentioned.
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