Hi,

I would like to know what is the most common treatment for RSD/CRPS. I had been diagnosed 4yrs ago and take 5800 mg of neurontin which i can't stand but, it does help with some of the more painful symptoms. is there a form treatment that most doctors follow. I've had and currently having a very hard time getting a doctor to even take me on as a patient.

 

Tom

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Hi tlsimon1964 and thank you for your question. Here is an answer to your question from Joshua Prager, M.D., M.S., Director, Center for the Rehabilitation of Pain Syndromes (CRPS) at UCLA Medical Plaza; Clinical Assistant Professor of Anesthesiology and Internal Medicine, David Geffen School of Medicine at UCLA:

 

There are several keys to treatment of CRPS (RSD). Interdisciplinary care including physical therapy is essential. Single modality therapy rarely is successful alone.

 

No matter what form of interdisciplinary care is used physical therapy is usually the mainstay of treatment. CRPS is a disease in which the principle of "use or or lose it" usually apllies.

 

For severe or long standing cases there are more aggressive thearpies that can be successful.

 

It is best to treat with someone who has exrtensive experience with diagnosis and treatment of the syndrome and has multiple modalities of treatment available. The disease is not considered "cured" after successful treatment but is in full or parital remission.

 

NOTE: Top medical experts on treating and relieving pain answer questions like these on the OnCall+ Pain Management site: http://abcnews.go.com/Health/TreatingPain/.

 

*****FROM ABC NEWS MEDICAL UNIT*****

MY DAUGHTER AGE 13 ALSO HAS CRPS.   WE TOO ARE LOOKING FOR A SPECIALIST WHO CAN HELP US.   SHE HAS HAD UN TOLLERABLE PAIN FOR 10 WEEKS NOW AND THEY DO NOT GIVE HER ANY OPIATE PAIN MEDICATION FOR IT.     WHAT HAS WORKED FOR YOU...IS THERE A SUPPORT GROUP???    GARY

Our son just turned 19 and has been dealing with RSD/CRPS for almost 5 years.  His diagnosis only came a little over 2 years ago; the fact that you already have a diagnosis is in your daughter's favor.  Look for a few things on the internet -
Dr. Sherry in Philadelphia; The Children's Institute in Pittsburgh; Dr. Rhodes in Corpus Christi, Texas.  Not sure what the rules are for this particular board - usually I can't post websites or name books.  Our son's pain does not have any apparent injury or trigger and it's bi-lateral in both knees.  Physical therapy (2 1/2 hours daily) helps him maintain circulation and function in his legs but his pain is severe (7/8 on scale of 1-10) and is with him 24/7.  Sleep is poor and even when he does sleep he has what he calls his "pain dreams" which means that he's conscious of his pain at some level even when sleeping.   He's had daily nausea for the last three 1/2 years which I"m sure is wreaking havoc on his esophagus.  Pain meds, acupuncture, biofeedback, gluten-free - none of it has reduced the pain even an iota.  Crippled by the pain in October 2006, an in-patient stay of 5 1/2 weeks helped him regain function via intense PT and his pain dropped from a 10 to its current 7/8.  Currently, a custom-built electrostimulation therapy has reduced his nausea by 50% and helped improve his ability to fall asleep and stay asleep for longer stretches dramatically.  (That's the Rhodes connection coastal blend pain center in texas.)  Always remember that your daughter is NOT a baby but probably stronger than most kids since she deals with a level of pain that most of us never experience.  It's not in her mind and although stress might aggravate it, it's NOT the cause of her pain.   I'll try to look for your posts down the road.  Don't lose hope - there have been so many advancements just in the three years since our son was finally diagnosed!

I  have lived with RSD for ten years now. It all started with an injury to my knee.  The physician who repaired my knee referred me to a pain specialist.  After meeting this physician I started with treatment that same week.  The treatment that I was receiving  was LSB's(Lumbar Sympathetic Nerve Block's).  These would help with my pain for about 8-10 hours at first.  Then eventually they only worked for 2-4 hours.  I then stopped having these and just tried to tolerate the pain.   As well as having the blocks I was also on a lot of medication.  I really did not like the affects of the medication but since it was helping, I was taking it.  The final straw for me to not taking any more medication was what happened:  I was with my husband and two young sons.  My youngest had to use the restroom and so my husband took him so that I could place our order.  By the time he came back, I still had not ordered.  Why?  Because I could not find the words to order - I did not remember what I had to do!  This was becoming a very frequent event.  So, my husband talked with me about this and then we went to the pain specialist that I had been seeing.  He had to wean me off the medication that I was on.  This took about two months.  At this point, we started looking into other ways of treating my pain.  I tried acupuncture - for me it was not very effective.  So, we went back to PT and I used a TENS unit as well that the physical therapist had prescribed.  During this time, I was told that there was not much else that could be done for me other than having a spinal cord stimulator placed.  I did go for further evaluation to see how severe my RSD was.  It was determined that it was very severe and I was told that if I ever fall into a cold/frozen river or lake, I would not survive.  The only option that I was given, was to have the spinal cord stimulator.  My husband and I went home.  After this appointment, we gave it much consideration.  The decision was that I would have the stimulator placed.  Now, the first step was to do a trial stimulator to see if this is something that would work.  Well, the result was phenomenal!  I had not been able to walk hardly and after the trial was placed, I went and walked the mall.  The following day, I walked several blocks.  I could not believe it!  My pain was so minimal!  I called the physicians office and told them that I needed to have this actually done permanently.  It was about three months later that I had the permanent stimulator placed.  It has been a life saver for me.  Without it, I would have been in a wheelchair by now.  Do not give up!  There is help out there!