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Originally Posted by Paphlady
Hello everyone. I hope to be able to make new friends and learn from you. I've done so much study and research about this insidious disease (RSD/CRPS), and I might be able to share useful info with all of you as well.
I'm from a state that knows nothing about this condition. I've been in 24/7 horrible pain since 2002. In the beginning of this nightmare, I went to the ER when the pain would get so bad that I thought I was going to lose what's left of my mind. My husband and I searched and searched for a doctor that could tell us what was wrong. When we could find no help, we got on our computers and read all we could. It took years. What helped us to know where to look was when a nerve conduction test was done, and the doctor said that it could possibly be RSD. I'd never heard of it. When we searched on RSD, there were all the things that had been happening to me. I was so grateful to find the info that listed so many of my symptoms, that I just sobbed and sobbed.
I go to a Physiatrist in another state (a 2-hour drive). They really just shove meds at me and no kinds of treatment. I'm looking for a doc that specializes in this and am having a tough time finding one.
This thread may go thru or not. After I registered for this site, it told me that I couldn't look at the pictures that I clicked on at the top. So I'm confused as to what I did wrong because it kept asking had I forgotten my password. I had not because it's a weird orchid term that no one could guess.
May you all have as little pain as possible today.
Warm regards,
Paphlady
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Welcome Paphlady,
Sounds like you and your husband have been thru so much frustration. So few Drs. even know about RSD let alone know how to go about diagnosing it. It was four years for me and one wrong diagnosis.I flew to an orthopedic group and got a diagnosis in 1 minute followed up by studies to confirm.
I agree with others in needing a neurologist. I actually have had a neurologist the last 5 years that is also a psychiatrist and pharmacologist, which is ideal for not only his experience with rsd in his past patients , but being my pain management Dr. and helping me emotionally when I was diagnosed full body and another neurologist suggesting I see a Psychiatrist to help me deel with this life altering horrendous disorder. I have had this 13 years and what has helped me the most is physical therapy, massage therapy, and swimming, water therapy. It has kept me mobile and being able to use 5 parts of my body, both feet, both shoulders and arms and one hand, which is half crippled. You can go on the RSDSA site and give your zip code and get a support group closest to your zip code. They'll give you a name and phone number and meeting time of the group. From there, you possible could get names of Drs. the group knows from experience in treating RSD.
We are happy again you found us, but happy to have a need. We all have found so much comfort from others and receive encouragement when we can say something that is helpful to someone else suffering.
Keep in touch, and again welcome, loretta