What does it mean to be diagnosed with CRPS/RSD?

When being diagnosed with anything it can seem overwhelming, and being diagnosed with CRPS/RSD is no different. If you are anything like me when I was diagnosed with Chronic Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, I had never heard of it before. But what does it mean to be diagnosed with CRPS/RSD?

A great place to start is to know what Chronic Regional Pain Syndrome is. CRPS is a rare and chronic illness that affects the patient’s nerves, usually after an injury to the nerves, causing the neurons to become overstimulated and continually fire signals of pain. CRPS usually is found in the arms or legs and it can continue to spread to opposing extremities or mirroring other limbs with this disease. Extreme pain is definitely one of the symptoms that comes with this disease but also accompanying pain is change in skin color (blue/purple and blotchy), change in skin texture (skin becomes thin and shiny or dry), stiffness or weakness in joints, loss of mobility, loss of circulation, change in temperature, and muscle spasms. Unfortuanalty because CRPS is rare and not clearly understood there is currently no cure.

With this diagnosis comes life change. Yesterday you might have been laying in your bed with no answer to your pain, but today you have an answer. Knowing the answer to your pain comes with life change. Going from normal to sick can be scary but now that you have a diagnosis you can start finding solutions to manage your pain.

With this diagnosis comes with making hard decisions. Once given your diagnosis your doctor might give you possible pain management plans or next steps which can be amazingly helpful. Because there is no cure all of the “solutions” given to you will mostly work on fixing your symptoms but not the disease. Depending on the condition of the patient and their lifestyle these plans can look different and each one has a different level of success, so choosing the one that fits your lifestyle best is what you should focus on.

With this diagnosis comes opportunity. Despite all the scary and crazy sounding facts known about CRPS, and the fact that it is rare, there are many people who are just waiting to reach out to you and offer their support. With sickness comes community in which you can find strength from others to lean on. No matter what kind of pain you are dealing with there are many groups just waiting to welcome you into their circle to relate to you in ways others can’t. With sickness comes connection in which your relationships will strengthen with strong members of your friends and family, but it is up to you to accept these opportunities and let them strengthen you.

Living with CRPS can be difficult and it may seem like a downward spiral at times, it may seem like there is no hope to a bright future, and it may seem like it is just easier to sit back and hideaway. But I know personally that this will only bring you heartbreak and disappointment, so don’t be afraid to open up and be honest with people when you need help. Sickness can scar someone or strengthen them so it is up to you to decide how this will change your life. It is possible to do all that you have ever wanted to accomplish and more just keep up the good fight and continue to gain strength along the journey.

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