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 09-12-2009, 10:53 PM #1
CZZ74 CZZ74 is offline
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Join Date: Nov 2006
Location: Florida
Posts: 422
15 yr Member
CZZ74 CZZ74 is offline
Member
 
Join Date: Nov 2006
Location: Florida
Posts: 422
15 yr Member
Default Sharing stories about Lesions

I was interested in others who have developed lesions and ulcers, how they did and the duration and treatment. I did not have my first lesion until year 5 and it still remain my worst lesion to date. I was told by my pain management doctor, he knew they were coming(I was furious, he didnt prepare me-but how can you for something like this?) and he felt part of the cause is/was there were pain episodes greater than meds could control. I would agree. Im interested in your feelings and experiences. thanks. cz

I have to tell this story about my worst lesion, forgive me.

My worst lesion, was on my knee, on the orginal injury leg, I do not know if that is significant. it started as an electric shock to a place on my knee cap with immediate swelling that looked like a bee sting.
The burning and pain was severe enough to cause me to grap a table to keep from fallling.
Then my knee swelled. I stayed off it , the entier leg, the rest of the night. I had a very restless night.

I awoke in severe pain, crying out, I had a lesion on my knee the size of a the palm of your hand. It was open and raw. the slightest bit of air was intolerable as was the pain overall.

I could not stand on my leg the pain was searing thought the whole leg. It turned out, I would be in my wheel chair fo nearly 4 weeks. The lesion stayed open and ozing for about two weeks, then it started boring down deep in to tissure and muscle and became an ulcer.

It was grotesgue. Of course all doctors thought it was someing else.

At one point I went to the RR as I just could not stand the pain any more. They admitted me. This was a huge mistake, going to the hospital- and letting them admit me.

They had no idea what RSD was, well vaguely, The next am they took a biospy of the lesion and isolated me. They wore masks when they came in my room and gloves.
I can not express how painful the scraping of the open lesion was... they tought I had mercers. Then they thought I had herpes etc etc.
It was a horrible experience, very painful. after 4 days they belivied me. that rsd caused it and deemed it a neurological burn.

After that they did notihng for it. they had absolutely no idea what to do for it. I had to build a little "fort" around it with pillows, blankets and sheets to protect it from the nurses and the hospital airconditioning.

they did not clean it, dress it, put pain sav on it or anytihng. It was awful. i couldnt wait to get out of there, they were absolutely terrified of it.

It took months for tihs ulcer to run its course, I could not stand for clothing to touch it. It eventually develped a scab over it, this helped but was still very pain ful.
I have a terrible scar from the whole ordeal. During my leg flares this scar has a flare of its own to this day, very hot and painful and changes many shades of purple. I am always afraid it is coming back. cz
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