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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Dear Harmony,

I'm sorry that you have to endure the pain you're experiencing and I appreciate the loneliness of your struggle. Our son is about to turn 19 and first began his experience with RSD at age 14. Unlike many adult RSD patients, he suffered no specific traumatic injury that triggered the pain. Despite numerous doctor visits, PT and OT programs, anti-depressants, anti-seizure meds, ant-inflammatories, acupuncture, biofeedback, daily exercise regiments, etc., he still has excruciating pain 24/7 in both his knees. The pain kept increasing until it paralyzed him in October/November 2006, and he was finally diagnosed with RND (reflex neurovascular dystrophy), a rare sister version of RSD, in December 2006. He spent 5 1/2 weeks as an inpatient at a clinic that bases its therapy on Dr. Sherry's treatment of adolescents with RND. (Sherry is based in Philly at CHP.) Basically, he did intensive physical therapy 6-8 hours a day that forced circulation to his knees by doing the activities that caused him the most pain - walking, running, jumping, etc. The goal of the program is to restore function with the hope that the increased circulation and forced activity will eventually override the malfunction in the nervous system. He did drop from a "10" to a "7/8" on the pain scale after a month, and he did learn to function with the pain, but that was in February, 2007, and he's never seen another pain drop since then. The drugs, given at high doses from October 2007 through May 2008 did nothing for his pain, but sometimes made him sleepier and since sleep has been an ongoing issue, he was grateful for that at least. He still does 2 1/2 hours of PT daily on his own. He works from a program that was devised for him at the Children's Institute where he did his inpatient program. If he skips a day because he's just so frustrated, angry, and depressed with his situation, his function decreases dramatically to the point where he needs to hold onto walls to walk, etc., and it takes him about a month to get back to square one which is all the pain all the time, but at least he can walk if he focuses on walking normally. He managed to finish high school with honors and started at the local university, but he took a medical leave of absence last month after the first semester since he complains of no memory, no focus, and the daily nausea that accompanies his pain interferes with his ability to sit in a classroom, do homework, etc. If you met him, you would never know the level of pain that he endures constantly. Some RSD patients have intermittent pain with flair ups during stressful times. His is with him around the clock. You can even hear him wimper once in a while when he's sleeping or just starting to wake up. He claims that sleep doesn't even offer any escape since he has what he calls "pain dreams".

None of this is helpful to you unless you simply need to know that there are other young people out there who share your misery, but I'd like to at least share some of what we've tried to no avail so that you don't waste your time. From all the research I've done and continue to do, I strongly advise you AGAINST any explorative surgeries, morphine implants, or drugs with strong side effects! Most recent RSD research indicates that anything invasive only aggravates the pain and our experience has been that the drugs do nothing for the pain. Norepinephrine is one of several chemicals/hormones that run through our systems. It's a neuro pain transmitter. Chances are you have an elevated level of it, perhaps due to a genetic flaw, and the increase was triggered by the initial reaction to your injury but, unlike what happens in most people, the levels did not decrease after the initial crisis to your body. It's only one of many chemicals associated with pain reactions, overreactions, mood, memory, etc. Anything you do that might decrease your circulation/blood taking Nyquil to sleep....or that increases your norepinephrine is most likely adding to your difficulties. Most of the drugs are treating the symptoms of your condition but not getting to the root cause - a difficult bill to fill when no one is quite sure of what the root cause actually is!

There's a doctor in Corpus Christi, Texas - Dr. Rhodes - who is having some luck with a custom-built TENS unit (electrostimulation therapy) and treating RSD patients. Many of his patients who have had RSD for years begin to respond within weeks of the daily treatments and protocols. We are in the process of trying it with our son at the moment. Although he's received no relief from his pain yet, he is definitely sleeping significantly more and more soundly and his nausea has been reduced by 50% after only a month of treatment. We are committed to sticking with the program for another six months in the hope that since he is deriving some positive effects from a month of hooking up to the machine, he may just start to see some pain reduction after several months of the therapy. (Dr. Rhodes seems to thinkg that within six months, he will start to reap the benefits of the program.) Instead of my explaining the whole system to you, I will give you the information sources so you can explore them yourself. I first came across his treatment via a google search on pain management that brought me to a book on Amazon, written by one of his patients that he cured. It's called "Pain Banishment, Not Pain Management". It's definitely worth ordering on and reading so that you understand the science behind his treatment. It's expensive and I can't offer any guarantees, but it's non-invasive, no drugs or negative, long-lasting side effects, and has made a tremendous difference in many people's lives according to the testimonials and the people I spoke with while I was there with my son. Look into it. My whole approach is to maintain hope with the knowledge that medicine is making incredible advances annually due to the exponential growth of technology these days. If you've never heard of this before, take it as a grain of hope that this may be what works for you. My son is not inclined to a positive outlook - it's tough to spend your entire adolescence in excruciating pain and still believe that everything's going to work out - but I'm a big believer in hope and optimism as necessary components of eventual cure. They are certainly not solutions in and of themselves, but they certainly aid any attempt at a solution.

Good luck and I'll try to let you know if I uncover any other alternative but safe treatment options! Keep me posted if you end up pursuing the treatment in Texas and let me know its effect on you.

-A mom who's doing her best to relieve her child's pain:)

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