FWD:Also Known As CRPS

RSD In the News : FWD:Also Known As CRPS
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From: byrd45 (Original Message) Sent: 8/18/2005 7:37 AM
also known as
Chronic Regional Pain Syndrome
(CRPS)


Burning pain, aching pain, shooting pain, swelling, limited mobility, hyper-sensitivity to the slightest touch ...

Withdrawing from commotion, short term memory loss, depression, living on a tight rope - between doing too much causing pain and doing too little causing pain ...

The vibrations of cars and music - in church or in movies - causing a lot of pain ...

These are among the many symptoms of Reflex Sympathetic Dystrophy (RSD). The pain is greatly exaggerated (not mentally, but physically) in comparison with the injury, surgery, or infection that brought on the RSD. There are four or five major symptoms. Many doctors will tell someone that they DO NOT have RSD because they do not have one of the major symptoms, but often RSD patients don't have all of them.

No, RSD is NOT RARE! There are more than 6 million RSD patients in the United States alone! Why haven't you heard about it? There is very little publicity about this life destroying/limiting disease. It strikes mostly adults, but it can strike young children and teens, too. No, there is no cure. No, there is no magic pill. No, there isn't one particular treatment. No, there isn't enough funding for research.

Those of us who know we have RSD are trying to help spread the word to doctors, nurses, and physical therapists. We also want the public to hear about RSD so they can help someone they know or help themselves get diagnosed as quickly as possible.

Early diagnosis and treatment is CRUCIAL! There is evidence pointing to reversal or remission of symptoms when the patient is treated in the first 3 months. From the 6th to the 12th month there is still a possibility of reversal. After that, it is very difficult if not impossible to reverse the disease. Those in this category live lives filled with pain, pills, and physical therapy. Reversal is rare and not guaranteed, nor is it necessarily forever.

There are several reasons why people don't get treatment quickly. First, many people don't seek care immediately. Because RSD often starts with a minor injury, they think they will get better without treatment. Second, most family doctors have never heard of RSD. If they have, they usually don't know how to treat it. Third, when diagnosed with RSD, many patients find that insurance companies DO NOT want to accept the RSD diagnosis and approve treatment. It can be very expensive to treat, so they send the patient to doctor after doctor while their chances of remission fade. Also, due to the lack of RSD-knowledgeable doctors it is very difficult to get an appointment with the right doctors.

Your Pain Doctor, most likely an Anesthesiologist, can give you many different treatments. For example, you can get nerve blocks (injection of a local pain killer) into the spinal area. They will use a combination of many different treatments, medications and possibly physical therapy. The combinations are very different for each patient. The journey to finding the best combination for you is a long one. Be "patient".

A lot of RSD patients are told that their pain and other symptoms are all in their head! RSD is NOT a psychological problem, it is a physiological problem. Even so, with many pain clinics, you may be asked to see a Pain Management Psychiatrist or Psychologist. Because the pain is hard to deal with and because it can cause depression, you may need to be watched for depression. Also, it just helps to have someone to help you deal with a life full of pain.

Be aware that most nurses and physical therapists know very little - if anything - about RSD. Many nurses don't know enough about RSD to know that their patients are not babies or complainers, but they are truly in deep pain. The physical therapy needed for RSD is much different than for most other pain and injuries. Only physical therapists who have studied RSD really know how to handle the patient.

Please, if anyone you know is suffering with burning pain, swelling, profuse sweating, or highly sensitive skin, tell them about RSD and the need for immediate help. If they have pain much worse than they should after any trauma or injury, and if the pain is increasing, they should ask their doctor about RSD. It can't be ignored. It won't go away. It just keeps on hurting and attacking many parts of the body.

I have read that approximately 30% of all Americans suffer from chronic pain of some sort and that 1/3 of those actually have RSD. That is a lot of Americans with this disease! It is a global problem though, and it's sad that patients have to go through so much before they get help!

My desire with this article is to bring awareness of RSD to the general community and the medical community!

I would love it if you would make copies and pass them on to doctors, nurses, physical therapists, and friends. If more people are made aware of this nasty beast, Reflex Sympathetic Dystrophy, there will be more research and better medical care!

By Karen Haag