ptcruiser's Blog

The Pain of RSD/CRPS

I 'm a 47 yrs old female and have been treated for 12 1/2 years for RSD/CRPS. I have tried different types of pain medicine. Which I get little of no pain relief. Approx 2 years ago they had to take me off the pain meds as they were shutting down my liver.

I tried a Spinal Cord Stimulator in 2002 but, had emergency surgery to remove it as I could walk without falling, keeping balance & Mirgaines. When they removed it they said I had spinal cord damage for the stins moving in the spinal cord area. After a month in the Hospital learning to re-walk and finishing therapy a home I'm doing great. It took me approx 6 month to get better but, not the way I use to be.

Now I suffer from lots of migraines and RSD?CRPS pain. The mirgaines are under controll with Topamax and injections. The RSD/CRPS pain is real bad at times, sometimes not able to do anything because of the pain. I would like to know if they is anything I could do to control the pain without pain meds. I became disabled in 2002 due to the pain and not able to work.

If you have any suggestion or comments please let me know...I just want to be able to manage the pain.

If you have RSD/CRPS I would like to know what worked or not for you.

Thanks,

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stkatesgirl

Have you tried Neurontin? or Gabapentin which is the generic for Neurontin? I ask because I too have RSD and I am on 300 mg of Neurontin 3x a day to help control the pain.  Neurontin can be given safely in dosesages of up to 900 mg 3x a day without causing liver failure or other organ failure. Topamax is great for migraines, but it won't work on RSD pain... My neurologist explained it as Neurontin is more for neural pain, and topamax is better for constrictions of blood vessels which is what happens in migraines and changing the nerves.

Let me know,

Brianna

ptcruiser

Hi Stkatesgirl,

Sorry I haven't gotten back to you. In regards to using Neurontin, I used it for about 3 years and had a real bad reaction to it. I was told I couldn't use it or any drug in that class because it could be fatal next time. I do use topamax for migraines and advert & shots it they get real bad.

Let me know, if you know of anything else. I hope your RSD is under control. The pain gets so bad at times, I just can't handle it.

 

Thank you,

Cindy

ptcruiser

Hi Stkatesgirl,

Sorry I haven't gotten back to you. In regards to using Neurontin, I used it for about 3 years and had a real bad reaction to it. I was told I couldn't use it or any drug in that class because it could be fatal next time. I do use topamax for migraines and advert & shots it they get real bad.

Let me know, if you know of anything else. I hope your RSD is under control. The pain gets so bad at times, I just can't handle it.

 

Thank you,

Cindy

Terry W

My RSD or CRPS started out in my scapula on the left side after a neck surgery and then went to my left arm. My RSD/CRPS mirrored to my right scapula and arm and now in both hands. Now it's in my feet and both of my legs and the pain is so debilitating. I just wish that more TV shows would put our disease out there because so many doctors think that it is all in our head. The pain was so bad I wanted them to cut my arms off however, that was not an option. By the time I was sent to so many different doctors and ran so many tests that all came out negative my RSD was out-of-control and was not diagnosed in a timely matter. We need more doctors like you to put it out there so people know that it's real.  This is an invisible disease   most Doctors don't understand it or have never heard of it. People say you sure do look good well looking and feeling is not the same and I can put on a face to hide the pain but inside it's killing me. I have become a recluse because my friends don't understand it and you just feel all alone. I feel sorry for my husband having to live with me and not being able to do the things we used to do. I just wish people and doctors understood this disease.  I have tried Neurontin and that family of drugs and I cannot take those.  I have serotonin uptake and it affects me horribly so I have to be very careful. Thank goodness I have a great pain management doctor. There was an article from a so called Dr. from another country that wanted to get rid of the word CRPS and call it arm pain or leg pain this is what we deal with. We have enough stress dealing with the disease and we don't need doctors trying to say that it is nothing more than a pain. It is one of the highest rated in pain on the McGill pain index chart.  Thank you for having a segment on CRPS. 

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