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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 07-11-2012, 05:37 PM   #1
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hey all.

Hey all just found the site and figured I would introduce myself. My name is Jason and I am from St.Augustine FL. All my problems started with a 18 foot fall at work I landed on one foot and completly crushed my ankle and dislocated it pretty bad. The hospital reset it and sent me home my foot ended up sitting out of place for 6 days before surgery which caused all sorts of damage. Over a 2 year period I had 7 different surgeries and over 200 PT visits all the while I would complain of severe pain and bruising,burning,and extreme sensitivity no one would tell me what was wrong I would sometimes be told to stop being a baby by the orthos PA. I then started seeing a new ortho and he was going to do a preop when he touched my foot I slappeed his hand away he called in the inhouse PM DR. And she diagnosed RSD just by looking at it and couldn't believe the others had just over looked it. She staryed treatment with 150mg of lyrica daily and 25mg of topamax along with 25mg oxycontin and 10mg percocet for breakthrough pain. This would help along with her freezing a couple nerves. After 3 years since my original accident someone runs a redlight and plows the passenger side of the car where I was sitting and completly smashed the rest of my leg. After more surgeries and a bunch of metal being added I now have RSD all the way up mid thigh. I am now on duragesic patches 50mcg and we are trying to find something for breakthrough pain he just perscribed 10mg methadone 3xdaily for 2weeks to try. I have never abused or taken anything I wasn't supposed to does anyone have any suggestions on something for break through pain? Is methadone a good one to use? I always relate it to something they give addicts to get off of heroin or other opiates at the clinic.

 
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Old 07-13-2012, 06:35 PM   #2
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Re: hey all.

Hi, Jason. I'm so sorry to hear of your RSD spread. Mine started in my foot post-surgery about a year ago and spread to my knee. Unfortunately, it's "late stage" RSD, so walking is permanently questionable. In any case, enough about me. I can appreciate your hesitation to use methadone, given its connotations. I felt the same way when my doc prescribed Fentanyl 50mcg patches, which are 100x stronger than morphine. I'm not fond of taking aspirin, let alone hard core opiates that I, too, equate with addicts. And I've read the horror stories of the long withdrawal process from patients as they wean off them. I refused to use them for the first eight months, and lived with excruciating breakthrough pain. Finally, my doc told me that I could cut the patches to reduce the dose as much as I wanted to. I tried (and still use) 1/4 patch (1/3 if absolutely necessary and only for a short time). Surprisingly, I experienced no side effects. Just a little more lethargic than usual, but nothing too noticeable and my mind is still sharp. Helps take the edge off the breakthrough pain. I also try to use them 3 days on/3 days off or as long as I can deal with breakthrough pain. I know methadone is different, but I hope this helps with your feelings about taking a drug that many of us relate to addicts. Best of luck to you, Jason!

 
Old 07-14-2012, 08:51 AM   #3
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Re: hey all.

I'm right here with you man. I messed up my hand though. Two doctors just totally overlooked it. I had surgeries to put my bones back together, nobody thought of nerve damage. Then I started PM 2 weeks ago and I got diagnosed with complex regional pain syndrome type 2. The burning, electricity type pain when anything touches it. The flair ups that last up to hours. My doc gave me morphine, which I want to get off and try something else. I get norco for breakthrough which is better than morphine IMO. Lyrica. But he gave me lidoderm patches. They work wonders. Along with cortisone shots and nerve blocks. There's a lot that go into this and we really have it bad. Best wishes, I feel for you.

 
Old 07-20-2012, 04:07 PM   #4
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Re: hey all.

Hello and welcome,

Everyone responds differently to different medications, so I can only tell you what works best for me. Over the course of a year I have been more meds then I knew existed and have finally found a good combination for me. Besides the Injections, I use a Butrans Patch (20mcg/hr) and supplement that with Suboxone (8mg, 3 times per day). Add in 2-3mg of Xanax, 400mg of Celebrex a day, and Pristiq for the associated depression and it has been so far the best for me. Not complete relief, but much more manageable.

There are lots of drug options, trick is to keep trying until you find what works for you. Hopefully your PM doc understands that - my first one didnt. When my second PM Doc gave me Suboxone, I researched it and found that it too was used for Heroin withdraws so I was a bit hesitant, but I am glad I tried it.

Hang in there, we all fight together here.

 
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