I was a RN for about 17 years before on injury to my right knee during a code put me off work. Due to delayed medical (waiting on workers comp to approve testing & surgery) it took 9 weeks before an MRI was done and 6 months before surgery, the entire time my right knee was swollen to 3 times it's normal size. I developed RSD/CRPS 2 months after the injury. The pain is unbelievable. I now, almost 6 yrs later, have full body RSD, have major mobility problems and the RSD is now affecting the autonomic parasympathetic nervous system. When my blood pressure rises about 120/80 my heart rate drops into the 20's and 30's and if my heart rate goes above 110 my blood pressure bottoms out. During my last hospital stay Nov 2011 my BP dropped to 48/palp. I almost did not come home at all. RSD/CRPS is very real. Further complications of RSD that I have are short term memory loss, petti mal seizures, bone loss (last bone density was -3.9), in 2010 I have 2 blood clots in my left leg in separate veins, due to decreased circulation from the RSD that ran from my mid thigh to mid calf. I can no longer drive, I am unable to do even simple household chores and need assistance with getting in and out of the bathtub. I can no longer take showers - the water literally feels like I am having my skin sandblasted off. Personally I will never be able to work again and with the complications of the RSD affecting hr & bp, I most likely will not live to see my worker's comp case settled.
There are psych issues, the constant pain and the frustration of dealing with people who think it is "all in our heads" and statements like "you look perfectly normal so you can't be sick". RSD/CRPS patients have one of the highest suicide rates because of this.
Let me educate you a bit about RSD. The following information is straight from an informational brochure about RSD written in laymen's terms so anyone can understand.
- RSD/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.
- Minor injuries, such as a sprain or a fall are frequent causes of RSD/CRPS. One characteristic of RSD/CRPS is that the pain is more severe than expected for the type of injury that occurred.
- Early and accurate diagnosis and appropriate treatment are key to successful treatment, yet many health care professionals and consumers are unaware of its signs and symptoms. Typically, people with CRPS report seeing an average of five physicians before being accurately diagnosed.
- There is NO cure for RSD. There is a treatment being done in Germany which has an 80% remission rate, however this treatment has not been approved by the FDA for use in the United States.
- RSD/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.
- RSD usually starts with an injury or surgery. Pain disproportionate to the injury is one symptom. Others are: excessive burning as if the skin is on fire, sensitivity to cold, excessive sweating, changes of temperature in the skin, changes of color in the skin from bluish to multi-colored blotches as if recent severe bruising took place, swelling, blotching, skin ulcers in later stages, rash to the point of disfigurement, extreme tenderness to touch, muscle spasms, blurring of vision, impairment of hearing.
- RSD/CRPS also causes Osteoporosis, loss of bone mass as well as decrease in circulation to the extremities which can lead to blood clots
- 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.
- Ice and exposure to cold can actually cause the RSD/CRPS to become worse.
- Treatments include medication, physical therapy, psychological support, sympathetic nerve blocks, and/or spinal cord stimulation.
- RSD/CRPS is the worst form of chronic pain known today. Unlike most forms of chronic pain it is a deteriorative condition, it gets worse
- RSD/CRPS pain is often describes as "burning like I had gasoline poured on me and someone put a match to it."
- Allodynia is common with RSD/CRPS. This is where the skin becomes so sensitive that a light breeze across the skin can cause severe pain.
- Insomnia is very common with RSD/CRPS
- Depression due to constant pain and loss of life-style is common and RSD/CRPS victims have one of the highest rates of suicide.
- RSD/CRPS can spread internally and adversely affect organs and the autonomic parasympathetic nervous system which regulates blood pressure and heart rate among other things.
The McGill Pain Scale, established in 1971, is often used to rate types of pain on a scale of severity. RSD/CRPD was previously known as Causalgia and it is under that name on the McGill Pain chart with a pain rating of 42. The amputation of a digit without anesthetic is rated at 41.
When interacting with someone with RSD/CRPS
- People with RSD/CRSP look just like normal people, they don't "look" sick.
- The pain is real and constantly present, even though it is invisible and may not be readily apparent by demeanor or activities.
- Please be very careful of the RSD/CRPS affected limb and ASK before touching.
- The affected limb, if at all possible, should not have blood pressures taken on it or have blood drawn from it
- Ice should never be used on a limb affected with RSD/CRPS
- RSD/CRPS is not contagious
- Sleep deprivation from insomnia caused by pain can adversely affect short term memory and attention span.
- Some days are good days and the person may be able to do more physically or be able to do things longer. Other days they may not be able to do the same activity they did the day before. An example of such activity could be driving to the store to pick up a few items or washing dishes.
Quote from tsmith1
I have two issues regarding RSD that I would like imput on:
1) Has anyone else noticed that the diagnosis is given in work comp injuries almost all the time but with motor vehicle the doctor's seem to go out of their way to rule this out? Why do you think this is?
2) I am also curious about opinions as to the validity of RSD as a diagnosis. Do you believe their truly is such a condition? How much of the condition is influenced by the psych component?