Originally Posted by RSDAuntieSue
My nephew was diagnosed with RSD in June. He has primarily left foot and leg leg pain, but now it has spread to the right side.
We would love any advice you can offer!
We have tried the following with some success (any advice here is helpful):
- physical therapy
- swimming in heated pools
- light therapy
- foot baths (warm water)
- electrical stimulation machine at home
- accupuncture (just a few times)
What suggestions do you have for the following that we'd like to learn more about:
- nutrition (supplements and vitamins? fish oil?)
- blood testing or other testing - are we missing anything?
- serotonin or other chemical imbalances that may effect how a body handles pain?
(PS - We are in the San Francisco Bay Area, so any support groups or other families willing to share stories would be great to hear about! )
Any help would be great. Many Thanks and Happy New Year to All,
Hello Sue and Welcome to Neurotalk - you will meet many great people here who I am sure will be more than happy to help you in anyway they can!!
I am SO very sorry to hear about your nephew ((hugs)) and I really hope that he can find something that will help him and ease some of his pain and other symptoms real soon.
I also suffer from RSD, I developed it when I was 12 years old after I sprained my left ankle and am now 13. The RSD has since spread to my right arm after another injury. I have tried so many treatments and procedures including medications, nerve blocks and Physical Therapy but nothing has helped that much for me. I have been on 2 Intense Physical Therapy Programs and the first one really helped me - before I went there, I was wheelchair bound and I am now able to walk short distances although I still have pain and the second one didn't help me at all. I am supposed to go back onto the program in January for my leg casting but I don't want to as I have read so many articles stating that casting can make RSD worse and it really scares me!!!
There isn't really anything you should change in your diet because of the RSD however Dr Hooshmand (one of the leading Doctor that treats RSD) has a website that states that with RSD, you SHOULDN'T eat chocolate, drink caffeine etc as it can make the pain worse. I haven't noticed an increase in pain whilst eating chocolate but everyone with this disease is different!
The link to the website if you would like to take a look is:
With Blood Work, it is extremely important that you don't inject directly into the limb that has RSD. My Doctor didn't know this and he did a nerve block into my leg which has RSD and I developed some pretty major complications. When having blood-work, please make sure the doctor knows about RSD and takes blood from the limb that isn't affected!!
If you have any questions, please let me know, I am more than happy to help you if I can and I know how scary it is dealing with RSD, especially at such a young age.
All my love and best wishes to you and your nephew,