A chronic, painful, and progressive neurological condition that affects the skin, muscles, joints, and bones. The syndrome usually develops in an injured limb, such as a broken leg, or following surgery. However, many cases of RSD involve only a minor injury, such as a sprain. And in some cases, no precipitating event can be identified. RSD/CRPS is characterized by various degrees of burning pain, excessive sweating, swelling, and sensitivity to touch .The key symptom of CRPS/RSD is continuous, intense pain out of proportion to the severity of the injury, which gets worse rather than better over time. CRPS/RSD most often affects one of the arms, legs, hands, or feet. Often the pain spreads to include the entire arm or leg. Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling.
Is there any treatment?
Because there is no cure for CRPS, treatment is aimed at relieving painful symptoms. Doctors may prescribe topical analgesics, antidepressants, corticosteroids, and opioids to relieve pain. However, no single drug or combination of drugs has produced consistent long-lasting improvement in symptoms. Other treatments may include physical therapy, sympathetic nerve block, spinal cord stimulation, and intrathecal drug pumps to deliver opioids and local anesthetic agents via the spinal cord.
What is the prognosis?
The prognosis for CRPS varies from person to person. Spontaneous remission from symptoms occurs in certain individuals. Others can have unremitting pain and crippling, irreversible changes in spite of treatment.
Stages Of RSD
Stage 1
- lasts 1 to 3 months
- severe, burning pain
- muscle spasm
- joint stiffness
- rapid hair growth
- skin color and temperature changes
Stage 2
- lasts from 3 to 6 months
- pain which becomes more intense
- swelling
- decreased hair growth
- nails which are cracked, brittle, grooved, spotty
- softened bones
- stiff joints
- weak muscle tone
Stage 3
- irreversible changes to skin and bone
- pain is continuous
- muscle atrophy
- severe limited mobility
- contractions of muscles and tendons (limbs may be twisted)
***I am at Stage 3 having lived through this for over 5 years, having it spread from my right wrist/hand, to my entire right arm and leg. Possibly even now to my left wrist/hand.***
Complex Regional Pain Syndrome (CRPS) is poorly understood by patients, their families, and healthcare professionals. In some cases the condition is mild, in some it is moderate, and in others it is severe. We have compiled a list of some of the common misconceptions about this syndrome followed by the facts.
CRPS Fact Sheet
CRPS Fact Sheet
- Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is a chronic pain syndrome characterized by severe and relentless pain that affects between 200,000 and 1.2 million Americans.
- CRPS is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, such as an accident or a medical procedure. This syndrome may follow 5% of all nerve injuries.1,2
- CRPS is two to three times more frequent in females than males.
- The mean age at diagnosis is 42 years. However, we are seeing more injuries among young girls, and children as young as 3 years old can get CRPS.
- This is not a psychological syndrome, but people may develop psychological problems when physicians, family, friends, and co-workers do not believe their complaints of pain.
If you are a loved one I try and protect you. I don't want you to know how bad it is. I don't ever want you to truly understand how much I suffer because I know how much you would then suffer as well. Many times my answer is simply, "I am fine. It is nothing I can't handle." Once in a great while I may let you know how truly horrible it is, after all, you see it in my eyes. But most of the time I try and shield you from the depth of my pain.
I think long-term chronic pain patients get so good at masking their pain, our pain, that when we have to reveal it, when we come upon circumstances where medical professionals need to see the actual level of pain we are in, it is difficult for us to convey the depth of the pain, to truly let down our guard, those walls we have built up, for fear of not being able to put them back up again.
So, having said that, what does CRPS/RSDS pain actually feel like?
Let me share with you what I shared with my Doctor recently and maybe it will help you understand our pain a little better.
CRPS/RSDS pain can be anywhere in the body where there are nerves. Most commonly in the four extremities but some people have it in other areas such as eyes, ears, back, face, etc.
What does it feel like? Well, if you had it in your hand, imagine your hand was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. Now imagine it both hands, arms, legs, feet; well, you get the picture. I sometimes sit there and am amazed that no one else can see the flames shooting off of my body.
The second component to CRPS/RSDS is what is called Allodynia.
Allodynia is an extreme sensitivity to touch, sound, and/or vibration. Imagine that same hand now has the skin all burned off and is completely raw. Next, rub some salt on top of it and then rub some sandpaper on top of that! THAT is allodynia!
Picture getting pretty vivid?
Now, because of the allodynia, any normal touch will cause pain; your clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by you in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. This is what allodynia is all about.
Imagine going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to children playing, causes you pain. In addition to the enormous pain you are already experiencing from the CRPS/RSDS itself. Imagine living with that pain and allodynia 24 hours a day, every day, for months, years, and longer.
I hope this helps you understand what I deal with every day.
Causalgia is Latin for "burning pain". It was the first name coined for CRPS/RSD. As you can see, Causalgia is far and away the most painful form of Chronic Pain that exists! This is a good tool to use with your loved ones to help them compare our pain with other diseases and problems they can relate to. It also helps you to see that you are NOT exaggerating your pain one little bit! It is also a good graphic to use when fighting for Social Security Disability. The McGill Pain Index was first developed in 1971 as a way of gauging the quality of pain. It was developed at McGill University by Melzack and Torgerson. When creating this index they included such things as sensory qualities (skin color, temperature changes, pressure, sensitivity...), affective qualities (tension, fear and autonomic properties...), and evaluative issues that are help pinpointing the intensity of the pain. This Index is used by doctors and hospitals around the world and is considered a very valuable tool when looking at chronic pain It is considered to be a valid, reliable, consistent, and above all, useful instrument. "Because pain is a private, personal experience, it is impossible for us to know precisely what someone else's pain feels like. No man can possibly know what it is like to have menstrual cramps or labour pain. Nor can a psychologically healthy person know what a psychotic patient is feeling when he says he has excruciating pain...There is a remarkable consistency in the choice of words by patients suffering the same or similar pain syndromes" Wall, P. D. And Melzack, R. (1994), Textbook of Pain, Churchhill Livingstone, New York, pp. 339-345.  |
