Thursday, May 1, 2008

RSD - I have it. What is it?

RSD is the name of the disease that has a hold on me. I felt the need to explain it as I have mentioned it to so many of you. Plus, getting awareness out for this disease is helpful to preventing it from taking hold in some folks who catch it early enough.
It stands for Reflex Sympathetic Dystrophy. There are 2 names for the disease now, CRPS-Chronic Regional Pain Syndrome being the other. Most people tend to use RSD interchangeably. I know I have mentioned it to people ...but I am guessing most people don't really know what it means. You may have heard Paula Abdul, of American Idol fame, mention that she suffers with it. She seems to be the most famous person we have who has said she has this disease from a cheerleading injury years before.

HOW I GOT IT: I was burdened with RSD after simple arthroscopic knee surgery for a meniscus tear. It is through no fault of the surgeon, but more a way that my own body reacted to the surgery. Most people heal in about 4-6 weeks with no issues. My healing after surgery was often going in the wrong direction, with swelling to the extreme, and redness and the inability to even have a sheet touch my leg at the time. I was in physical therapy and working on it several times a week only to have it continue to worsen. In January of 2007 I was diagnosed with RSD after my surgeon referred me to a pain specialist who made the final diagnosis, that I may have RSD for life. It can go into remission but no one knows how or what causes it to go into remission. Anyone who has this is constantly in prayer to have remission come upon them. It is a disease of the nervous system, that the body sets up a pain loop from the brain to the injured area, that never shuts off, even though the extremity may be healed from the surgery. The pain is not imagined pain. It is very real. Some people think because the brain is involved, that it is therefore "all in the head". This is not true...this actually causes physical things to happen to the affected areas causing the pain. There are times when I cannot even have fabric touch my leg or arm, it is that painful.
Below is an explanation of the disease taken from RSDSA(Reflex Sympathetic Dystrophy Syndrome Association) . Just click on the link if you would like further information or know of anyone who is also suffering from this disease.

Reflex Sympathetic Dystrophy is a debilitating progressive disease of the Autonomic Nervous System. It is a chronic multi-symptom condition which is often characterized by severe burning pain, pathological changes in bones and skin, swelling, diminished motor function, and extreme sensitivity to touch. It can occur in one, two, or sometimes all four extremities , and be in the face, shoulders, back, eyes and internal organs as well. RSD involves your nerves, skin, muscles, blood vessels and bones. Although it usually occurs after trauma (minor like a sprain or major like a car accident or stroke), infections, surgery, or repetitive motion disorder, it can sometimes occur without any apparent cause.
If diagnosed quickly and treated properly, RSD can go into remission. Periods of remission can last weeks, months or even years and often will continue until an additional injury or trauma to the body causes the RSD to become active again. If treatment is delayed, RSD can spread to the entire limb or other parts of one's body and the changes in the bone and muscles can become irreversible. Unfortunately RSD remains poorly understood and often times is misdiagnosed. This is why it is extremely important for all of us to learn as much about the disease as we can and to educate others, including our family members, doctors, media etc.
While not every person has all of the same symptoms, the major symptoms that most RSD'ers
have are:

  • 1: Constant burning pain which is often described as having a hot poker being stuck into you. The pain is known to be out of proportion for the type of injury suffered. After the injury or trauma, the sympathetic nervous system seems to react abnormally and send incorrect messages throughout the body.
  • 2: Inflammation while not always present, presents itself as pitting or non-pitting edema.
  • 3: Skin changes which include, but are not limited to, temperature changes, skin or tissue atrophy, increased hair and nail growth or hair and nail loss, dryness, rashes, increased sweating, and an over sensitivity to touch.
  • 4: Spasms in the muscles and or blood vessels, tremors and dystonia.
  • 5: Diminished motor function and the eventual development of dystrophy and/or atrophy.
  • 6: Bone changes
  • 7: Emotional disturbances including insomnia, depression, concentration and short term memory difficulties.

For many of us, one of the hardest things to adjust to is never knowing how much pain the day will bring. We can wake up feeling (and looking) fine but within a matter of hours find ourselves bedridden once again. Or we feel well enough to do some things one day (household chores, running errands, or even going out to socialize with friends or family) and as a result of having a "good" day, we are bedridden in pain for the next 2-4. The little chores which used to take us a short time to complete now take endless tiring hours as we often have to stop for breaks before we are done.
Our activities play a huge part on how we feel and we must learn to make changes in our lifestyles to accommodate this. We need to learn to avoid activities which make our pain flare. We need to learn to set our daily priorities, set realistic goals, and most importantly learn to pace ourselves and rest when needed.
We also need to take into consideration the outside forces which will affect the way we feel including noise, crowds, weather and barometric changes, temperature changes, etc.
As hard as it is, we must try to find new interests and hobbies which enable us enjoyment without taking too much of a toll on us. We need to try to keep as active, mentally as well as physically as we can.

is in my left leg, left arm and often my left eye twitches at various times through the day. I recently broke my baby toe on my right foot and I fear that the RSD is moving over there. It has remained purple for 2 weeks now and the pain is spreading now up the right side of my foot. Any new injuries can have the RSD move into that particular area, so we must be careful about treating new injuries as well. My skin has all ready begun changing on the left leg, hair loss, and shiny thin skin is on my leg. It often turns a light purple when I am in a flare up all the way from the thigh to the foot will change color.
I am on a mixture of heavy pain medications including lyrica, oxycontin and vicodins. I am grateful for the Lyrica, for it has truly helped me to have a more normal life. But on days when the rain and cold set in and the barometric pressure is high like today, you will still find me suffering, despite how much pain medications I take. I also have a new friend who just moved here from Philadelphia, who sadly also has RSD and has had it for 14 years. I am grateful to have someone to share the path with who truly understands.
There are many wonderful people out there....millions of us, suffering with this disease. Little is being done to understand it or treat it. We are often treated with medications that were created for other diseases. It is a baffling disease indeed. Thanks for taking the time to read this and understand why when I have a few bad days and can't post or create cards, you now know why. This smiley holds the orange ribbon for RSD.

1 comment:

Rex G. said...

Read and study Hooshang Hooshmand's site on RSD/CRPS. He was the first modern specialist on the malady--S. Weir Mitchell being the first to identify it. Dr. Hooshmand specialized in RSD after serving as a beloved professor at The Medical College of Virginia. He has superb advice on mainstream treatments and on diet.
Good luck!