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 09-16-2009, 08:12 AM #1
bbpoolgurl bbpoolgurl is offline
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Join Date: Sep 2009
Posts: 19
10 yr Member
bbpoolgurl bbpoolgurl is offline
Junior Member
 
Join Date: Sep 2009
Posts: 19
10 yr Member
Book New to the board and have never done a message board before

Hello all, my name is Brittany, and I found your message board after a couple of family members suggested I go online and find one that can offer support and understanding in what I am going through. Please bear with me, as I have never done a message board before, so I do not know the correct or incorrect way of doing things (I don't know if posting a new person post is correct?). If I am doing something wrong/there is another more accepted way of doing it, please let me know!

I am 23 years old, and I was diagnosed with RSD/CRPS in November 2006. My story is as follows...
Injury to left ankle on the job July 30, 2006. Immediately saw doctor at Occupational Health with job manager. Was told it was a severe sprain and was placed on crutches to keep weight off. Kept going back to OH, who kept saying I needed to see either a podiatrist or Orthapedist. Job kept refusing seeing another doctor. Finally, after about 18 weeks of still being on crutches and excrutiating pain that seems very out of place, saw a podiatrist, who told me it was too late, that the nerve was already damaged and I had RSD. He perscribed Lyrica, placed me in a CAM boot. Referred me to my current pain specialist. Saw both Pain dr and podiatrist for about 3 months. Finally switched to just the pain dr. Since switching to her, I have tried NSAIDS, nerve meds, anti-seizure meds, anti-depressants, 3 rounds of PT, narcotics, and 17 left lumbar sympathetic nerve block injections. Last year, she referred me to a pain surgeon for a Spinal Cord Stimulator. Had the trial last November with the SCS, which went fabulously.

Because this is a worker's comp case, we have been fighting my former employer for treatment. Everything that could go wrong in a case, has gone wrong. We have letters from their lawyer saying they accept the diagnosis and will pay for everything- and then he retired, and the current lawyer who took over is refusing payment and treatment, playing very dirty and nasty. Plus, they changed the worker comp laws in my state (delaware), and because of that, I was one of the first to go under the new law, which no one really knows how to operate, which added many more months. Now, we are fighting an appeal that could take over a year because no one knows how the court system will work. It doesn't help that the courts in DE are biased towards worker's comp employers, and against any cases with RSD (they think I am "making this up").

For now, I am on the narcotics (which by the way, I refused for the first 2 years because of a history of addiction in my family). Now, I am on the Duragesic Patch 50 mcg, and Vicodin 20 mg PRN. The hope is that with the patch, I won't have to take the breakthrough meds as much- which is proving to be the case. I was on MS Contin, which was horrible, I had such reactions to it, and the side effects made me miserable. The patch is so much better, so much more steady, I love it (as much as one can love pain meds). I also use a cane, because worker's comp denied the wheelchair that my dr wanted me to have.

I am engaged to a wonderful man who takes care of me and loves me for me- he is the only reason I am able to get through all of this. I am currently on medical leave from school. My biggest worries with all of this is not the pain, but family- Brian (my fiancee) and I want to have children one day, and I worry constantly about the affects this disease, the drugs, the SCS (if I ever get it) will have on my body and my future children. All I ever wanted to be was a mom.

If anyone needs doctors, mine are wonderful. Even though they were in the line of succession for who my worker's comp would pay for, they have fought and fought against them for me, and I couldn't be more thankful for them. Dr. Ginger Chiang out of Delaware Back Pain, and Dr. Jalali out of Lankenau (Pennsylvania) Pain Center. Both are wonderful, and I highly recommend them. They are more about treating and hopefully putting into remission, rather than just doleing out the drugs.

Anyway, thank you for reading this far, and if anyone has any advice/thoughts/prayers for me, they are more than welcome. **

Brittany
__________________
Brittany

Diagnosed RSD/CRPS November 2006

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"Don't tell God how big your storm is, tell your storm how big your God is."

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Last edited by Chemar; 09-16-2009 at 08:29 AM. Reason: NT guidelines on linking
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