Imagine that you got hurt. Maybe the injury was as simple as a mild sprain, or maybe it was as serious as multiple broken bones. You get the correct treatment for whatever type of injury it was, and you figure that it'll heal in a normal amount of time. Instead, it doesn't. The pain gets worse and worse, eventually becoming much more severe than when you first got hurt! X-rays are normal, and your doctor doesn't know what's happening. You have test after test, and after months, or even years of not being believed, you're told you might have RSD. But what is RSD?

In 1994 I sprained my ankle, and my story fits the situation I just asked you to imagine. It took over a year to get diagnosed, and over three years to get the correct treatment.

RSD stands for reflex sympathetic dystrophy, the most commonly used name for the disease I have, which has recently been renamed complex regional pain syndrome type 1. However, the new name hasn't caught on, and is still rarely used after more than five years. RSD is a progressive disease of the autonomic nervous system. That's the part of our nervous system that controls things that we can't control, like heartbeat, breathing, and blood flow, for examples. The autonomic nervous system is divided into two parts: the sympathetic nervous system and the parasympathetic nervous system. The sympathetic nervous system speeds everything up when your body's under stress, and the parasympathetic nervous system slows everything down. When you get hurt, the sympathetic nervous system reacts to start the healing process. After the injury is healed, the healing process turns itself off...except, in a person with RSD, it doesn't. It over-reacts, instead, and the healing process becomes extremely destructive, rather than helpful.

RSD pain is very unique. It's usually described as "burning", and the first name for RSD was Causalgia, which means "burning pain" in Greek, and was adopted in 1864. I like to highlight what I call the Fourfold Pain of RSD. The first kind of pain is called neuropathic pain, or nerve pain. It's a very sharp, stabbing, burning pain. The main characteristic of neuropathic pain is very extreme hypersensitivity to touch, called allodynia. The wind blowing on my hand can literally make me cry, and the vibrations from somebody tapping a pencil on their desk hurt unbearably.

The second kind of pain is vascular pain. The sympathetic nervous system is responsible for constricting blood vessels in an emergency, and since mine is on a constant abnormally big emergency status, my circulation is usually partially cut off, except for the times when I get too much circulation. No matter which extreme, it results in a constant throbbing, pressure-like pain, along with swelling, discoloration, and temperature changes. The inconsistent blood flow actually damages the blood vessels, which in turn damages the muscle, bone, and skin.

The third kind is muscle pain. RSD deteriorates the muscles, and in some cases causes severe muscle spasms and tremors. In advanced RSD, the muscles have been worn away to the point that the affected limb looks like a claw.

The last of the Fourfold Pain of RSD is bone pain. RSD causes osteoporosis, and a lot of arthritis-like symptoms, like stiffness.

There is no cure for RSD, but that doesn't mean that some people can't be cured. Because of the fact that RSD can recur with a new injury, those who get better are in remission, rather than cured. If RSD is caught early, it's very treatable, and patients can return to their normal lives. Unfortunately, it's estimated that only about 50% are caught early enough. The other 50% of patients end up with chronic RSD. The disease is considered to be chronic if symptoms have persisted for more than one year. The disease damages the skin, nerves, blood vessels, muscle, bone, and nails, and after a while the damage may become irreversible.

There are a lot of different treatments for RSD. The most effective treatments are nerve blocks. That's when a needle is inserted near a nerve, and a local anaesthetic is injected to numb the nerve. There are a lot of kinds, including stellate ganglion blocks, which is in the neck and treats an arm with RSD, lumbar sympathetic blocks, which is just like the stellate ganglion blocks, only it's in the back and treats a leg. There are also epidural blocks, which numb the nerves in the spinal column. That can be done either with a needle or with a catheter (which is a little tube), like I have right now. In my case, they connected the catheter to a pump, which keeps a constant drip of medication going, for the best effect possible. There are also blocks called Bier blocks. That's when they drain the blood from the arm or leg, put on a tourniquet (like a blood pressure cuff) and inject the medication right into the limb.

Medications can be helpful too. Medications include things that aren't made for RSD, but work because they act on the nervous system. They include: antidepressants, anticonvulsants, which are seizure medications, antihypertensives, which are blood pressure medications, because all blood pressure medications work by blocking the sympathetic nervous system to open up blood vessels, therefore lowering the blood pressure. Narcotics are controversial, especially since they don't work well for neuropathic pain, but they do help in some cases, and they are good for the other types of pain.

In some cases, it is necessary to have devices implanted to control the disease. One popular device is called a Spinal Cord Stimulator (SCS). That is a device that is implanted in the space near the spinal cord, with a battery pack also implanted under the skin. It uses electricity to interfere with the nerve's signals. Infusion pumps can also be implanted, andthey are a little more invasive. A catheter is placed in the intracatheteral space in the spinal cord, and a pump is implanted under the skin. It delivers a constant drip of medication for years. Morphine is commonly used in pumps, but other people use other things.

Physical therapy is essential for treatment of RSD. There is a fine line between "use it or loose it" and "no pain, no gain". The first statement holds true, but the second can be very harmful. The affected area must be moved, but doing too much can aggravate the RSD. Certain things should never be done for RSD in physical therapy. Ice is very harmful, because it constricts the blood vessels, and that makes the disease progress much faster. A TENS unit is an electrical device that can be used for pain control, but sometimes it hurts more than it helps. The one thing that should always be done is called a Stress Loading program, which consist of pressing on something (compressing the joint), and then carrying a weight (if the RSD is in an arm), or strapping it on (if the RSD is in a leg).

RSD is not a common disease, but it's not rare either. It goes unrecognized too much, and that has hurt thousands of people. I hope that this has made you more aware of a little-known but horrifying disease that affects so many people. Only through awareness will RSD become "the disease that went away" instead of "the disease no one ever heard of."

This is a picture of what RSD looks like. On the left is my bad foot, compared to my good one, which is on the right. At the time when this was taken, I had an epidural catheter in, with a continuous infusion. In other words, this is an improvement on what my foot usually looks like.