Why I Feel Lucky Despite My Struggles With CRPS

Pain is an inevitable part of life. In fact, pain is a powerful way for our brains to protect our bodies from harm; it signals something is wrong and that we need to take action to make the pain go away. But, what happens when our brain gets it wrong and continues sending pain signals when there is no longer danger to protect us from? When a minor injury occurs, such as a sprained ankle, the nerves adjacent to the injured area (peripheral nerves) send pain signals to the brain; when the pain is resolved, the signals stop. However, for people with a rare neuro-immune disorder called complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD), the central nervous system malfunctions and creates a feedback loop that takes on a life of its own.

The pain and disability caused by this disorder is compounded by the fact that it is not well known in the medical community. Persons with the disorder see an average of five doctors before they are accurately diagnosed. It is widely known that early diagnosis (within the first three to six months) produces the best outcomes for treatment of the disorder. The consequences of not getting the right treatment, at the right time, can be devastating. Many of those diagnosed with this disorder become permanently disabled and are unable to work.

 

In this regard, I am one of the lucky ones. Not only was I diagnosed quickly, I was treated by a physician who specialized in this disorder. Through social networking and volunteering, I have heard from hundreds of people who have this disorder, and their stories are heartbreaking. Many of them have lived for years in excruciating pain without being properly diagnosed, or worse, being subjected to treatments that make their pain worse.

I will never forget one of those stories. It was from a woman who lost her career after having become disabled. She was a teacher, and she worked very hard to get to where she was. It was August, and she posted a short message in a Facebook group saying simply that this was the first year she was not preparing to welcome her students back to school. I was about five years into my battle with this disease and was still working full-time. It wasn’t easy, but I loved my job and I had no plans of giving up my career. In my response, I promised I would never take for granted the ability to continue working and that I would keep her in my thoughts on the days I struggled and wanted to give up. I told her I knew I was one of the lucky ones, whose symptoms remitted with treatment enough of the time that I could carry on with parts of my life I had been successful in prior to developing CRPS. I assure you, I meant every word.

However, as the disease process continues, the pain can, and often does, spread to areas that were previously unaffected. Despite having good care, this is exactly what has happened to me. Three years ago, I left my career at a public university when the pain became disabling and left me unable to continue on the job. CRPS now affects both arms and my ear and face. It also pops up in other areas of my body after a minor injury (e.g. a sprained ankle), but, so far, it has not taken hold in those areas.

I appreciate the times when the pain permits me to catch a glimpse of my old life. That is why writing for The Mighty is so important to me. I see myself again in the words I craft on the page. I see hopeful thinking in black and white, and it is my truth at the time of its creation. The stories of others have helped me bring a sense of realism to an existence that heretofore I could never have imagined.

There are many other things I feel lucky about:

1. I have access to good treatment, where others may be stuck with pain clinics that accuse them of being drug addicts.

2. I have access to good health insurance that actually pays for the treatment my physicians recommend, whereas others are denied even basic coverage for things like spinal cord stimulators.

3. I have a stable home life with a roof over my head and people who support me, whereas others have spouses who walk out on them or are otherwise alienated.

4. I have the confidence of my family in that they know the pain and disability are real, whereas others have family that believe this is “all in their head.”

5. I have a private disability insurance plan, whereas others are denied over and over for Supplemental Social Security Disability Insurance.

6. I will not lose my home because of my medical bills, whereas others have to decide whether they buy their medications or pay rent.

7. I can still drive a car, whereas others have extensive physical limitations or take medications that preclude them from driving.

8. I have two children who still think I am smart and funny, whereas others have been left on the sidelines watching their children grow up without them.

9. I have the opportunity to connect with others who have this condition, whereas others know no one who can relate.

10. I have days that I feel like the strong, intelligent person I know myself to be, whereas others have only despair and the longing to end the suffering.

Having said that, if there were one thing I wish I could change, it is to be kinder to myself when comparing my pain with that of others. Knowing I am lucky, and knowing others have it worse than me, is a burden like nothing else I have ever experienced. It is easy for me to tell myself I am carrying a load less severe than my friends in the community. It is easy to beat myself down as ungrateful or illegitimate. Being grateful for what I have is the easy part, as is being empathetic towards the struggling of others. My challenge now, is to find a way to honor my own experiences as a person who has lost a lot too.

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Thinkstock photo via JZhuk.