I'd love to talk more with you!!

I know what you are going through... I was diagnosed in fall of 2006 and have been in physical therapy even longer, and I am on medications. It sure is rough.

I sent you a PM... I hope to talk with you more soon.

Kali, My niece, Kathryn, has had RSD for 5 years. She is 20. She fell off a horse, went for surgery to repair a torn muniscus and apparently developed RSD. She now has a pain pack where she pushes a button to dispense pain medication.
I just wrote to a natural healer and he believes she has a staph infection. He recommended a supplement called Nature's Sunshine PLS-2. .
Don't know for sure if she is going to try it but I am hoping she will. Kathryn (she was named after me)

Hello,

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?)
- diet
- 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,
Sue

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:

http://rsdrx.com/four_f's_diet.htm

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,
Alison.

the pineapple enzyme is called "bromalain" (I think), but I read about it in Mehmet Oz's books. Very hard to find.
Lori Lee

Hi all,

A month before I had surgery on my rsd foot (this past Aug 08) I started to take the following vitamins:

• Multi-Vitamin
• Vitamin B complex 50 mg
• Calcium 500 mg
• Vitamin D 400 mg 3 x per day
• Vitamin C 1000 mg 3x per day
• Fish Oil 1000 mg 3 x per day

Post surgery I started Serrapeptase 90,000 I.U. 3 x per day an anti-inflammatory enzyme. Since taking this enzyme I have much improved range of motion and less pain.

Is this improvement a result of this product, the fact that the metal was removed from my foot, the vitamins, the increased frequency of IV lidocaine or all of the above? I'm not sure but I'm happy with results overall. Still not pain free but it is very manageable.

I just returned from my vacation so I am feeling the effects of flying. After my outbound flight it took 3 days to calm down the heightened sensitivity, the rest of my vacation I was in good shape and able to walk with limited pain and full range of motion. We just got home yesterday and I will have to see how I do on this end. We came back to 4 feet of snow and unable to drive to our house. It was a real challenge just to get into the house from the street.

Recently my PT pointed out to me that the new nail growth on my rsd foot appears to be much healthier. There is a clear pre/post surgery distinction line on my toe nails especially on my big toe.

Overall I feel healthier and stronger so I'll stick to this.

Happy New Year to you all.

Haven't tried yet, but this looked like a good site to check out for those with chronic nerve pain. http://www.blessedmaineherbs.com/chpare.html

Just had my first massage today. It was very interesting. It felt like my therapist hands were on fire, not my skin. It was difficult to deal with at first but by the end of the hour I actually felt better. Burning returned a couple hours later, but I can see how desensitizing can work. I tan too and that was interesting a couple times as were mosquito bites. Bug bites burned for a long time even taking benadryl. Who would believe this? You can't make this stuff up! New to the issue so sorry if you have heard all this before.
Jerie

Hi, I am Tyler, I am 19 and I have stage 3 CRPS... The constant pain every day for 3 years now has been manageable... But, now I really feel like I am losing my composure. I think it has something to do with my recent break up... Struggling to keep the pain in my knee/leg under control and the emotional pain of this is too much. If anyone has anything that WORKS to reduce the pain and sensitivity I feel 24/7, it would be much appreciated...

Here are some facts about my issue:

-Extreme sensitivity to touch, fabric, cold, hot
-Pain worsens with emotion: sad, irritated, bummed, irritated, mad, any negative emotion
-Spasms about 5-10 times a day, more when weather changes

Any questions, please ask. Any advice, PLEASE provide!

I've been taking multi-vitamins, grapeseed extract, vit E, Vit C, calcium, hyaluronic acid and omega 3s for years. I don't know whether they help or not but an increase in pain scares me so much that I'm afraid to quit taking them.