This is my story.
It started with a twinge. A simple twinge in my foot. I had just started getting into running, and I had to stop because of this twinge. After seeing a few orthopedic surgeons, I found out a tendon had given out. A simple surgery followed, and some physical therapy. I wasn’t getting better, so a second surgery followed. I again wasn’t getting better, and had even more pain and burning. The surgeon tried more things. A hard cast. More physical therapy. Waiting, waiting, waiting, and eventually told me he couldn’t help me any more. He gave up.
The second orthopedic surgeon did a third surgery which fixed the problem, and I again had issues with pain and burning after recovery. He diagnosed me with what I had feared–Complex Regional Pain Syndrome (CRPS) type II.
CRPS type II is basically a damaged nerve that keeps sending off pain signals to the brain, even though there shouldn’t be any pain. The second surgery had caused the damage. CRPS can go into remission if it is caught right away or if you are really young. Unfortunately, that was not the case for me.
CRPS is rated as the most painful chronic pain syndrome known. There is no cure. It is nicknamed the “suicide disease” because of the prevalence of people committing suicide due to the pain.
When I was diagnosed, I felt like my life was over. I knew that I would never have my old life back. Running was out. Dancing was out. It felt like everything I ever loved doing was going to be gone. When a pain flare would hit, I fully understood why it was called the suicide disease. I couldn’t imagine living in this much pain the rest of my life. The pain was so overwhelming that even speech was beyond my capabilities. I just wanted to die. The CRPS spread from my foot to both of my legs and to my right arm.
While there is no cure, there is help for the pain. I had a spinal cord stimulator placed. Nodes were placed in my spinal cord to “collect” the pain signals before they reach my brain. A battery pack was placed under my skin to keep it running, and I control it with a Bluetooth device. While it only takes away about 30% of my pain, I keep working with it in hopes of it doing more.
I am also on anti-epileptic pills, which work to help with nerve pain. I get nerve blocks to help with the burning in my arm. I take opioids daily to help the pain so I can function. The opioid crisis does not make this easy for people who actually need this to live. There are fewer and fewer physicians who will prescribe them, and those who do treat you like you are a criminal. CRPS affects short-term memory and sleep, so I struggle with both every day. I take multiple sleeping pills in hopes of sleeping each night.
Right now, I am learning to adjust to a new normal. I use a cane daily to get around my house. I have a mobility scooter if there is anything that involves a long walk. If there is a big event, I know I need to rest for a few days, and make sure I have enough pain pills to get me through it (and enough days after to recover). Learning what can and cannot be done is a challenge. There is a lot of depression and sadness, but trying to face everything with as much humor as possible helps.
Luckily, I have an amazing husband who acts as a caregiver for me. He has learned to cook now that I am unable to, he reminds me to take my meds, and he manages everything without a single complaint. The role of a caregiver is incredibly hard, and they do not get enough credit in the world.
–MorganLearn More About Chronic Pain