“There’s nothing I can do. You have RSD.”
Those words changed my life forever. But what was RSD?
RSD stands for Reflex Sympathetic Dystrophy. It’s also known as Complex Regional Pain Syndrome. You’ll often see it abbreviated as RSD, CRPS, or RSD/CRPS. Doctors know it by both names.
RSD is a complex medical disease with no cure. Classified as both an autoimmune disease and a Central Nervous System (CNS) disease, it affects the Sympathetic Nervous System.
RSD, in the most basic terms, is a misfiring of the nerves. Most often, it is caused/in response to a simple injury; mine was in response to a sprained ankle. After something happens that the body regards as traumatic, such as surgery or an injury, you feel pain in that area from the nerves being damaged. As that area heals, the pain diminishes and subsequently disappears, with the signal between your brain and the damaged nerves disappearing with returned good health. In those with RSD, while the injury itself heals, instead of that signal disappearing, it is instead amplified. Think of it as a knob switch that instead of being turned down then off as you heal, is turned up and amplified.
Often the original affected site is a limb (my ankle in my case). However, the disease can spread, either through another injury or surgery, or at times for no reason at all. It can spread upwards and affect the entire limb, and it can also spread to other limbs as well (I have spread from my left leg to my right arm). If the disease has progressed severely and is in the later stages, it can affect internal organs as well, such as the bladder. Often it affects the stomach and can cause a disease called Gastroparesis, which affects the rate at which your stomach empties.
As a result, the person feels pain. Excruciating pain. Often, since the nerve signal is amplified, the pain is amplified and much worse when compared to the original injury. The nerves continue to send constant pain signals to your brain, which worsen over time. RSD Pain is considered to be the worst pain known to man, according to the McGill University Pain Scale. Out of a score of 50, RSD Pain ranks at a 42- higher than fibromyalgia, cancer pain, natural childbirth with no pain medication, and amputation of a digit without anesthesia. With RSD, the pain is a burning pain, all over, never diminishing. Like someone took a knife from the fire and stabs you over and over, twisting deep with the red hot poker, while simultaneously lighting your blood, flesh, bone, muscles, and nerves on fire with lighter fluid. Again, there is no cure.
Other symptoms that help make a diagnosis include: swelling, mottling/color change, thinning of the skin, brittle or thick nails, hair growth change, numbness and tingling, bone density changes, skin temperature changes, allodynia (extreme sensitivity), and muscle weakness and deterioration. There are other individualized symptoms a person may have as well.
Because of its status as a rare disease, diagnosis can be difficult and it often takes a specialist to finally make the correct diagnosis; often, diagnosis comes after many months or even years of misdiagnosis, mistreatment, and pain. Diagnosis is through observation and symptoms; there is no “test” that can be preformed for certain diagnosis, hence it’s often misdiagnosed or under-diagnosed.
Treatment is palliative in nature; keeping the affected limb and person comfortable as well as helping the person maintain a steady lifestyle (even if adapted) is the goal. Treatments include medication- narcotics for pain, neurological meds to calm the nerves, nausea meds, anti-spasmodic meds, and others. Spinal Cord Stimulators, implanted into the epidural space of the spine, are a common treatment, and a similar implant called a Dorsal Root Ganglion Stimulator is becoming more common. Another implant doctors utilize for treatment is an intrathecal pain pump, which holds medication in a reservoir and delivers them continuously to the intrathecal space in the spine. Nerve blocks- Lumbar Sympathetic for the lower limbs and Ganglion Stellate for the upper limbs- are often utilized as well. Epidural blocks, often lasting a week, can help in the lower extremities. Physical Therapy is often a major part of treatment plans as it allows patients to maintain a level of independence. Finally, adaptive aids- everything from walkers, wheelchairs, canes, crutches, braces, shower stools and handles, blanket drapes, and more- are a common occurrence in the RSD community.