You Said I Have What??????

"Never heard of it." I said when the doctor told me I might have Reflex Sympathetic Dystrophy.

I had seen yet another doctor because of the massive pain I had in my hands and arms as a result of a work related injury for two years. I had x-rays and an EEG which indicated mild Carpal Tunnel in one arm and moderate Carpal Tunnel in the other. Yet, my pain was intolerable.

Now, as someone who has been extremely athletic, and accustomed to going to work the day after stitches and in pain, etc. I knew I had a high tolerance for pain. For two years, it was assumed Carpal Tunnel was my problem. Of course it had taken my Workers Compensation insurance carrier two years to authorize surgery for Carpal Tunnel however, I also knew the degree of pain I was suffering was inconsistent with the EEG results.

I went finally to a specialist to arrange for this surgery. He told me to have the surgery under no circumstances. Reflex Sympathetic Dystrophy (RSD) had to be ruled out first or the condition would worsen. It took another year for my insurance carrier to authorize a diagnostic procedure.

RSD occurs when there is an injury to the body. Oddly, the injury does not have to be major. Infections from paper cuts, childbirth, and broken bones, among other things, can actually trigger the RSD 'response'.

This is the crux of RSD itself. Due to trauma (usually severe), the brain does not respond to the healing information the nervous system is sending back. Normally during this stage pain begins to decrease. Instead, the brain cannot interpret this neural information and continues to feed back to the site pain signatures that increase pain. Eventually further pain, impairment and damage occur. In many cases, such as mine, this syndrome does not necessarily stay limited to the injured site. It can spread also to the whole body. You see, in some cases RSD can and does spread. It did with me.

The "McGill Index" is the diagnostic tool with which pain specialists gauge pain. This index rates the highest pain factor for the worse form of cancer at "27". RSD at its worst is a '42" with nothing above it.

Because the nervous system goes awry, pain is not the only signature of RSD. The nerves, skin, blood vessels, muscles and bone are affected. The immune system is also destroyed. Patients are likely to develop osteoporosis, arthritis and even lupus. Among other things that can be impaired as the disease advances are the heart, lungs, teeth, memory loss and eyes, to name just a few.

New, recent research is supporting clinical data that RSD destroys cells. Keep in mind the nervous system is throughout the whole body and includes the brain, heart, lungs, kidneys, etc. If cells are being destroyed, there is diminished flow of oxygen to the brain, heart and, in fact, the whole body. Destroyed cells mean glucose is also not being delivered properly. In short, brain function as well as all of the organs can be severely impaired with time.

The best treatment is early diagnosis. In other words, RSD must be diagnosed and treated as quickly as possible. Sadly, my own personal experience has shown me most doctors know little of this disease at all. Although clinical studies indicate Ritalin (the medication that has been used to treat hyperactivity in children) may be the new 'magic bullet', Elavil (also a psychotropic used for mental illness) has been a common treatment. Elavil, however, can cause side effects such as extreme, unquenchable thirst, and a neurological disorder called EPS (extra paramatal syndrome). This causes Parkinsons like symptoms that if untreated can result in Tardive Diskensia (TD) which is permanent. Such medication, including neurontin (a seizure medication proven to alleviate pain) did not work in my case.

Keep in mind however if one takes medication such as elavil and the above neurological side effects occur it must be either discontinued or supplemented with an anti seizure medication to offset the side effects. These medications, of course, have side effects of their own. In all honesty, many have found relief in medications such as elavil. Others have not. I had to stop taking elavil because of EPS. More distressing still for RSD patients is that the truth is there are very few medications that can address RSD related pain.

A 'ganglion block' finally determined my RSD. This procedure is done in an operating room. It entails an injection of pain blocking medications, such as lidocane, directly into the ganglion where the misinformation occurs. In my case, it was the neck. My risk during this procedure was seizure and that the aorta, which is was next to the affected nerve ganglion in the neck, could be severely impacted.

Nerve blocks can help control pain if provided as a therapeutic pain management tool on a regular basis. Muscle atrophy is a major consequence because RSD patients are inclined to avoid painful activity. Physical therapy is difficult for many such patients to complete because of the additional pain that is the usual post-therapy response.

Although RSD itself can kill in the long term, the highest cause of death for RSD sufferers is suicide. Pain, loss of career or employment and the corresponding problems associated with this (loss of home, loss of self esteem, ongoing depression, development of isolation from loved ones as the depression increases) reaches such an emotionally painful level, many feel the only way to escape their situation is to commit suicide.

Women seem more likely to get RSD and the number of children that are contracting this painful disorder is growing. Yet, most doctors simply do not know enough to prognose effectively in order to implement the early intervention treatments that so essential.

I knew nothing of RSD when I contracted it so early intervention was not an option given to me. But, if you are suffering extreme, unusual pain talk to your doctor about RSD.

References:
Pain Relief Advocacy and Information www.jackstem.com
RSD Syndrome Association of America http://www.rsd.org/ (click on references)
Neurological Institute of New York 710 W. 168th Street
New York, N.Y. 10032