Hi, I've had RSD for over a year now, and I am only 17. I have had pain blocks in my spine and been through vigorous PT and medication but nothing helps. I am now using acupuncture weekly to help subside some of the pain, but it never goes away. I can barely walk and do anything by myself. What is my next step?

I have RSD, I am in soo much pain right now, on some websites they say not to use ice on the affected limb, is that true?

People argue about the ice thing. I never use ice because my leg is generally so cold as it is. We did use ice on my leg during PT before knowing I had CRPS.

Are you seeing a pain management doctor? They should be giving you an idea of what steps to follow next. What meds have you tried?

I was 17 when diagnosed so I know how devestating this is during your teen years. I felt like my world was crumbling. Please PM me if you ever feel like chatting about that. (I'm 25 now.)

No Ice No Hot and cold water contrast therapy.
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Ouch, that looks nasty!

Yes I am seeing a pain management doctor but not as often as I should due to bills that we can't afford. They have me on tylenol and ultram or vicodin for pain, flexeril for my muscles and voltaron for swelling. *(I know those might now be spelled correct). What really just made everything worse is that the mri showed bruised bone as well, so they want to cast me or i have to be on crutches at all times. I go to college half day and my high school he other half. I don't know how I will manage that.

The only thing i think alot of us do is just try and manage the pain. Unfortantly there is no cure and there is no real treatments for it. Im in my young 20s and its crap, its in both my arms, chest and neck. Im looking into diffrent things that MAYBE i could try. But for the last 4 1/2 yrs its just been a matter of managing my pain the best we can.

Look up a product called a roll about I used one for 2 weeks after ripping my calf muscle Man sure beats crutches and there is no way I would allow to cast an Area affected by CRPS.

Hey,

I've had RSD since I was 14 (I'm now just shy of 21), so I understand where you're coming from. For me, I kind of went down the same path it seems like you described. My RSD started in my right foot, but then it slowly spread to include all of my limbs, trunk, neck, and back. I did a nerve block (ick) and intense PT/OT. The best I can say in what helped me the most were PT and OT. However, I would find a PT/OT place that has successfully dealt with RSD before. It is definitely painful, but since you have age on your side, you may have some success. I was in a day-treatment program for 40 hours per week for about 4 months or so. I did have to go on home-bound with my school because of it, but I went to an in-patient and out-patient facility that had worked with a few RSD patients before. The one who got discharged right before I started had RSD in her left foot and was about 12 or 13 I think...Either way, she went through the same program as well and is now back dancing. Ultimately, I did learn how to walk again, though I definitely wasn't able to return back to gymnastics since it's such a high-impact sport.

Sorry, I just realized I rambled a bit...I guess what I'm trying to say is that you should (1) get a general doctor who you trust (on top of the PM doctor) and who is familiar with RSD...I know this might get expensive, but you don't have to see him or her frequently...it's more of a safety precaution so that you know you have a doctor who is familiar with you every step of the way...it also helps in regard to referrals in case you wind up needing one in the future; (2) don't get anymore pain blocks...if it didn't work the first few times, it more than likely won't work in the future; and (3) find a PT/OT place that's successfully dealt with RSD patients.


ps: Oh, no on the ice. Definite no.

pps: If you ever want to pm, just feel free to send me a message. I had RSD all through high school...I'm now in college and managing RSD on top of that, so I can definitely sympathize with you.

My 16 year old daughter has been treated for RSD at Children's Hospital of Philadelphia. Her doctor is David Sherry. His is a no meds program that focuses on PT, OT, psychological therapy, etc. He has a phenomenal success rate with his patients - @ 90%, I believe! Prior to treatment my daughter suffered from extreme pain (mainly her back, shoulders, and neck) sometimes soo bad that she had bouts of global transient amnesia, sensitivity to touch, headaches so bad she was unable to speak. She was unable to attend school and participate in any physical activity. As of today, thanks to Dr. Sherry's program, her pain is minimal if any, she's returned to sports (back to playing basketball & ran a 5K early this month)! Never give up hope! If you're unable to go to Philadelphia, I'm certain that someone in his office will offer contact information if there's another physician following his protocol closer to you.
You can speak to someone in Dr. Sherry's office by calling 215-590-7234.