Discussions By Condition: I cannot get a diagnosis.

RSD Whats the best treatment??

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: kay159
  • July 8, 2007
  • 00:50 PM

Hi there
My 12 year old daughters just been diagnosed with RSD can you please tell me what is the best treatment for her condition?
Shes just had a nerve block, but eveer since she as been very wobbly, Is this a side effect??? :(
The neurologist we are seeing has put her on Gabapentin, Paracetamol, Ibuprofen and Baclofen but none of which seem to be working. :mad:
Please reply asap

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3 Replies:

  • Gabapentin is suppose to take a month to kick in. Was she on it that long? Did she get this pain after an injury?
    Monsterlove 2,921 Replies Flag this Response
  • Andrea ,Please go to American RSDHope and read all you can aboutRSD .This link will take you to their RSD treatments section :http://www.rsdhope.org/ShowPage.asp?page_id=155To treat RSD, usually they start out with medications and nerve blocksand PT (physical therapy). Keeping the body moving isvery important.RSD needs to be diagnosed and treatment started withinthe first 6 months of the start of the disease , for best prognosis.I've had RSD for 11 yrs now (I'll be 49 next month).The fact that your daughter is only 12 is good, fromall I have read about RSD over the years, it seemsthat young people have the best chance of going intoremission. I don't like Neurontin, I was on it for 9 years andthen switched to Topamax . The Topamax is a lotbetter, I am not sleepy all the time and my mindisn't as muddy as it was when I took Neurontin.You should also check out a great RSD info siteby Dr Hooshmand :http://www.rsdrx.com/He is now retired but he put together a lot ofgreat information about RSD.Be sure and read his RSD Puzzles on his site.Nerve blocks are usually done in sets of 3 .So if the first one did not work , don't be too discouraged.The usual meds for treating RSD areAntidepressants, muscle relaxants, anti-inflamatories,pain meds ( for treating SEVERE pain, such as opioids ),and anti-seizure meds. Psychological support is very important becauseRSD causes depression . Living with an invisible disabilityis very stressful and challenging. Especially for young peoplewho lead such active lives. RSD puts severe limitations onour physical activities . So be sure that your daughtergets lots of emotional support .Get her into an on-line RSD support group for young people.You should also join a support group for RSD parents,b/c RSD affects the whole family. You can find a listing of on-line RSD support groups atAmerican RSDHope :http://www.rsdhope.org/ShowPage.asp?PAGE_ID=53Good luck to your daughter.hugs,Catherine RSDer for 11 yrs
    Anonymous 42,789 Replies Flag this Response
  • For the RSD pain, try Promethazine. It's a generic of Phenergan, usually used for nausea. That is NOT what it's for in my case. I was prescribed Promethazine for a standard illness 5 years ago, along with two other meds, & the entire week, my RSD ankle was pain free. No doc would prescribe it for me since I wasn't nauseous normally, until I finally found a doc that had a clue about RSD. A neurologist. I wasn't sure it was the Phenergan, but he theorized it was & let me try it for a few weeks. The doc said that RSD patients have higher levels of dopamine in our brains, which is why he thought the Promethazine was the RSD pain reliever five years ago. I did not ask details on the correlation, but will if requested. Some days, the pain is so bad that I have to take two at a time. It can cause drowsiness, so be careful. I really hope that other RSD sufferers can benefit from this.
    rockandahardplace 6 Replies
    • November 20, 2009
    • 06:29 PM
    • 0
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