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 08-06-2014, 02:14 AM #1
LittleKingdom LittleKingdom is offline
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8 yr Member
LittleKingdom LittleKingdom is offline
Newly Joined
 
Join Date: Aug 2014
Posts: 1
8 yr Member
Confused 26 yr old battling CRPS, contemplating SCS????

Hello!

So I guess I'll get right to it. I'm a 26 year old female who has been battling CRPS for 2 years now. I'll start from the beginning... I had a tumor 3 years ago. When it was found (& not told to me until a good amount of time later) it was 2cm and when it was taken out 6 months later, it was 10cm. It was benign so in that respect, I am extremely lucky. It was a ganglioneuroma tumor and I guess those are normally asymtompatic and I was one of the unusual cases that felt pain, most likely when my stomach was full and so on. Well, I had that sucker taken out and afterwards I had the most horrible pain in my right leg (from the tip of my toes to my ribcage). I couldn't explain it and it felt like pins and needles, sharp, dull, joint pain, skin pain and everything all at once. I continued to see a pain management doctor that I started seeing the in the hospital when I had my surgery. He did roughly 20 nerve blocks on me in about 8 months. After awhile, it wasn't helping anymore. I had maybe 1-2 days of relief and then it went right back to pain city. In the meantime, I excelled at my job and got a promotion and kept working to try and mask the pain. My doctor had basically given up on anything else besides giving me a SCS. I have been taking 600mg Gabapentin for 2 years, by the way.

So I work on my feet for 40 hours a week for about a year without seeing any doctors and after a while, I couldn't mask or hide the pain anymore. I started seeing a pain management doctor that was referred to me by my OBGYN. He is incredible. After numerous tests and MRI's, he gives me round of steroid shots. The problem is, I have some seriously effed up nerves and they're all tangled in a ball and hard to see/get to and the modern medical equipment won't do it. Now I'm at the point where I've been on disability for 3 months and I still don't see land in sight. Half of me wants to hang up my hat and get the SCS and just HOOOOOOPPPPPE it works. At the same time, I want to try the more holistic approach like accupuncture but that's not covered by my insurance and who knows weather it will bring me any relief.

I am 26, I don't drink and haven't for over a year, I haven't taken pain pills in over a year, I am not overweight and I am 85% vegan with the occasional fish included in my diet, I get enough water, I don't drink soda and I do yoga on a regular basis. I just don't know what to do and I am feeling more broken than ever. I can't seem to get any good advice of information... so here I am.... asking for advice and information.

I know things could always be worse and I honestly think that is what is getting me through this but I would love to find something to get me out of pain and on the road to possibly being a mom someday.

Thanks in advance!!!

xo
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