Thursday, May 14, 2009

What is RSD?

RSD (Reflex Sympathetic Dystrophy), also called CRPS (Chronic Regional Pain Syndrome), is a degenerative disease of the autonomic nervous system. It generally comes about after a trauma such as a broken bone, sprain, or surgery, generally of an extremity - mine is as a result of knee surgery. The autonomic, or sympathetic, nervous system is in charge of all of the involuntary things that your body does: heartbeat, temperature control, pain, skin color and texture, circulation, hair growth, and so much more. When you have an injury, the sympathetic nervous system comes to your rescue sending more circulation, swelling, and pain signals to let you know that you have an injury. In RSD, the sympathetic nervous system never shuts down after the injury. It still thinks that there is an injury, so it continues to fire pain, swelling, etc. signals long after the injury has healed.

Sometimes, if diagnosed early (within the first 6-12 months), RSD can be reversed. Unfortunately, this happens all too infrequently. It is a rare disorder (although more people have it than one might think, considering most people have never heard of the condition) that often goes undiagnosed because the doctor thinks that the pain will go away if you're patient, that the patient is exaggerating the pain, or that the patient may just want more pain medication and is therefore making up the pain or its severity. Of course, it could just be that the doctor is unfamiliar with RSD and so misses the signs and symptoms. If it is not caught early, RSD is permanent and degenerative.

The pain, often described as a burning sensation, becomes much worse, and the symptoms can and often do spread, first to the opposite limb, then to the other extremities, and finally to the whole body - called Systemic RSD where the disease has spread to the spine and brain, as mine has long since done.

When RSD has lasted long enough (I've had mine for more than 15 years), the pain becomes unbearable, and actual tissue damage takes place. The bones become soft, brittle, and porous; there is wasting of the muscles; skin, hair, and nails change in texture, color, and consistency; all joints tend to become arthritic; and muscle spasms can deform and actually dislocate joints. Muscle spasms have even been known to be so strong that casts are broken. Again, the disease is degenerative and incurable - basically a living nightmare!

It is so painful that sleep deprivation becomes a problem. Most RSD sufferers have disrupted sleep patterns with all of the resulting symptoms. Many are wheelchair bound, &/or bedridden. I have been confined to a wheelchair for 10 years, and leave my home maybe once a week.

The only treatment is to manage the pain as best one can. Medication-wise this is done with nervous system relaxers, antidepressants, and strong pain medications like Morphine, Methadone, Oxycontin, etc. I have been on 40 mg of Methadone per day (the maximum for me) for 5 or 6 years (by comparison, a heroin addict in a Methadone clinic might be prescribed 5 to 10 mg per day). It does not come close to killing the pain. At most, it takes some of the edge off of it. Unfortunately, there is no pain medication that is very good at killing nerve pain.

Not enough is known about the nervous system: why some people get RSD while others have similar injuries or surgeries and recover just fine; why RSD spreads; why the nerves can't be "jump started" to get them behaving normally again;or etc. It's a frustrating disorder for patient and doctor alike.

Here is a good website if you would like to learn more:

http://tinyurl.com/4zm38

For me, RSD is a nightmare. My doctor has tried everything to give me some degree of pain relief, without good results. I have had multiple operations, nerve blocks, permanent epidural catheters delivering anesthesia and opiates (decent pain relief, but my body rejected every one), TENS, implanted spinal cord stimulator, and enough medication to knock out a horse, all with little lessening of the pain.

It's truly a horror: I'm in tremendous pain! But I have actually learned to cope. I dug myself a deep dark pit of despair, and lived there for about 3 years. Every time I thought I saw a light at the end of the tunnel, it turned out to be a train. I was in and out of the hospital, including one five week stay. But eventually, with a lot of hard work, I clawed my way back to the surface. I have learned a lot in these 15 years, and I am on a mission to share what I have learned. I know the despair of this diagnosis, I understand that I will never be pain free again. I've actually come to terms with that, and I believe I can help others get there too.

My goal now is to share what I have learned; to help people who are newly diagnosed or long-term sufferers to realize that they can do it. If I can help even one person NOT spiral down into the kind of depression that I just barely lived through, all of this pain will be worth it. That's saying a lot, but it's true. So if you are in chronic pain, from RSD or some other reason, or you know someone who is, please make my blog a regular stopping point. And feel free to post: ask questions or tell your story. I want this blog to become a positive place where we share ideas and things that have worked to ease our pain. If we stick together, than when one person is having a bad day, the rest of us can lend support.

4 comments:

  1. Wow, I can totally get how you feel. I have horrible pain as well. I get burning pains in my feet and legs and numbness. My muscles become very tight and it just hurts. I am on a ton of medication and nothing really helps. I currently take lyrica, baclofen, tinzandine, tramadol, cymbalta, and ambien. I do notice a different without the medications, the pain gets really bad but even on them it is bad.

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  4. Good sharing, Knee joint pain is a common problem with many causes, from acute injuries to medical conditions. Normally people will believe surgery is the only way to relief knee pain, in fact, some may ask how to cure knee pain without surgery. Yes there are ways like using Unloading bracing technology, having ergo mattress etc. More information:
    http://kidbuxblog.com/surgery-free-for-relief-knee-pain/

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