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 mainly as burning or deep, aching, cold, 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 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 had 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.
Now please note I do have flare ups every now and again but have not had significant issues since 2017. I do not regularly have sensory issues because if I feel a hint of sensitivity – 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 and feel faint, but I do it anyways because I control what I wear and what I do – my body does not. Now with the EDS that is a debatable statement, 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 say I could not be touched I meant it. I would have tears streaming down my face when I worked out and hated my body. I cannot control the dislocations or EDS and the comorbidities it brings, 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 (mainly EDS and chronic pain related just not burning/RSD-like pain), but I choose when I shower and for how long, I choose what I wear based on what I want to look like, 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 took years of 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.