What is RSD/CRPS?
CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy) is a chronic neuro-inflammatory disorder. It is classified as a rare disorder by the United States Food and Drug Administration. However, up to 200,000 individuals experience this condition in the United States, alone, in any given year.
CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale.
CRPS generally follows a musculoskeletal injury, a nerve injury, surgery or immobilization. The persistent pain and disability associated with CRPS/RSD require coordinated, interdisciplinary, patient-centered care to achieve pain reduction/cessation and better function.
It is important to know that research has proven that CRPS/RSD is a physical disorder. Unfortunately, it has not been unusual for medical professionals to suggest that people with CRPS/RSD exaggerate their pain for psychological reasons.
- Pain that is described as deep, aching, cold, burning, and/or increased skin sensitivity
- An initiating injury or traumatic event, such as a sprain, fracture, minor surgery, etc., that should not cause as severe pain as being experienced or where the pain does not subside with healing
- Pain (moderate-to-severe) associated with allodynia, that is, pain from something that should not cause pain, such as the touch of clothing or a shower
- Continuing pain (moderate-to-severe) associated with hyperalgesia, that is, heightened sensitivity to painful stimulation)
- Abnormal swelling in the affected area
- Abnormal hair or nail growth
- Abnormal skin color changes
- Abnormal skin temperature, that is, one side of the body is warmer or colder than the other by more than 1°C
- Abnormal sweating of the affected area
- Limited range of motion, weakness, or other motor disorders such as paralysis or dystonia
- Symptoms and signs can wax and wane
- Can affect anyone, but is more common in women, with a recent increase in the number of children and adolescents who are diagnosed
What about treatment?
There are big differences for treatment and also expected outcomes depending on when you are diagnosed. I was diagnosed as an adolescent my treatment outcomes were higher but Boston Children’s Hospital has shown research that most adolescents diagnosed with RSD have another illness going on that has yet to be diagnosed because of lack of symptoms or no symptoms at all! I didn’t have enough symptoms to diagnose the EDS but that is now more of an issue than the RSD.
There are many ways to treat and control symptoms. The best way is through aggressive occupational and physical therapy along with psychological counseling. If someone told me back when I was struggling that I should just do PT and suffer through the pain and 5 years later I would be able to control my symptoms I wouldn’t have believed you and tried one of the many dangerous short lived effects of heavy medications, nerve blocks, and/or infusions. Thankfully my parents made me follow through with the plan the PPRC gave us. Now there are somethings I don’t agree with in regards to their practice but I do agree with most things. I am against using opioids and heavy medications to treat chronic pain, but I am for using opioids and heavy medications for acute injury/dislocation recovery. I am not against opioids or infusions- I have had infusions and have used opioids. I believe that they are a last resort level 10 pain used only when 100% necessary on occasion. Getting with a PT is the first step to recovery.
Now please note I do have flare ups every now and again but most arise when I have a dislocation or subluxation. My pain gets to serious levels where I actually lose consciousness and pass out. I do not regularly have sensory issues and if I do- I address it right away. Meaning if a blanket is bothering me- I rub the blanket all over where it is bothering me and desensitize the crap out of it. If I am in the shower and water is hurting me- I stay in the shower longer and desensitize. and YES THIS HURTS. Sometimes I cry or pass out (also note I am always in a safe position if I am desensitizing to ensure I will not get hurt) but I do it anyways because I control what I wear and what I do- my body does not. Yes with the EDS that is debatable but with the RSD it is not.
The treatment for RSD is retraining the nerves.
Retraining them that blankets are not crushing me, shower drops are not bullets, and touch is not like knives. I say what I say because I was someone that for TWO YEARS could not be touched, put a shoe on my foot, wear pants (I only wore shorts), wear bracelets or necklaces, could not receive hugs or high fives- when I said could not be touched I meant it, would have tears streaming down my face when I worked out, and hated my body. I went through all you are going through and after every dislocation- I have to do it again. and again. and again. I cannot control the dislocations but I am doing my damn best to control how my body responds after sensory wise. I still get color changes. I still get hot/cold flashes. I still suffer insurmountable pain every day, but I choose when I shower and for how long, I choose what I wear based on what I want to look like, I choose what form of exercise I do, and I choose to able to hug, give high fives, brush up against people, and cuddle with Jared when watching a movie. I choose that life. A life that requires insane upkeep to desensitize- but I have, continue, and would do it all over again to maintain trying to live a life as normal as possible.
RSD is a constant burning pain and this is why I am called “the girl on fire.”
For more encouragement on RSD/CRPS visit RSD/CRPS 4 a Cure