I had my first encounter with complex regional pain syndrome (CRPS), formerly known as reflex sympathetic dystrophy (RSD), when I was 13, though overall it was relatively harmless. When I was 15 I sprained my right ankle (again) and had a more serious flare which sent me down to Boston. The ordeal was not only hard on me but on my mother, in particular, who was my main caregiver. With all the nerve blocks and physical therapy I missed some school, but was able to remain relatively positive throughout the process with the help of a fabulous LCSW. I was lucky in the fact, that once that flare calmed down my CRPS went into remission for almost 3 years before it raised its ugly head, and boy was it ugly.
A photo of me at pain rehab when someone brought in balloons.
In the spring of my senior year of high school it flared again. We tried obvious things like PT, medication changes/increases and again the nerve blocks but nothing seemed to help. For a while I went to school, but then I went less and less. The CRPS had spread from just my right lower leg to being on both sides from the waist down as well as in my lower back. I never realized how much the lower back participates in all body movements until that flare. As things continued to get worse I had to quit my part-time job, and I went to school less and less. Specialists tried all kinds of things, an in-patient epidural nerve block combined with PT as well as other things to try to help, but this was like a raging California fire, except it seemed like it would never go out. To make life bearable they gave me pain pills. At first I wouldn’t take them. Then I took them as necessary. Then I took them regularly. Once I couldn’t stand to go to school I would go down to the other end of the house and lay on my side (the only comfortable position) with pillows on my parent’s bed and watch TV from there. The pain pills always put me to sleep, or dulled my mind so I was still in agony but it didn’t seem to matter. They made me feel like I didn’t exist, and I didn’t want to, not mentally anyway. Being conscious meant that I could feel the coldness, like tiny ice picks hammering into every pore. I didn’t want to feel it, so I chose unconsciousness as much as possible, and in between all I had was HGTV.
One day my mom walked in and informed me that my doctor had gotten me into the first group of a new pediatric pain rehabilitation clinic. I was furious. PT had already proven to be useless. Why couldn’t everyone realize that I wanted to be in oblivion and leave me be? We had a small argument about it but in the end, I went. It would have been a drive for us (4+ hours with traffic a day) so every Sunday afternoon we would drive down and check into our hotel room for the week and leave Friday. It was an outpatient program where we we do PT and psychotherapy all day. This program, that I was dreading, ended up saving my life in immeasurable ways.
Now, of course, the program taught me that sometimes the saying “No pain, no gain” is accurate. I left with skills that I have used over and over to deal with subsequent flares. It also made me well enough to be able to walk across the stage and receive my diploma and then go on to college away from home as planned. What I really gained there though was a community. The physical therapists and the pain specialist were amazing and understanding, all of them realizing the agony we were in (and being put through) and trying to create moments of fun for us. The real and lasting community of course were the other girls that were there with me. Before that first day I had never met anyone my age who was chronically ill, let alone someone with the same thing that I had. It took a few days, perhaps even a week, but soon we were like sisters, that were especially supportive. We cheered one another on, fought for one another, played pranks on the staff, and made the entire experience bearable. It was magical and it was something that I never wanted to lose. When I graduated the program after three weeks I missed those that were left behind. I remained close with 2 of them and still speak with them today, but the magic didn’t stop there. After we left the parents saw how much it helped their children (as well as themselves) to be with people who “got it” so we would have meet-ups and get introduced to others who had been through the program. I met so many amazing young women (and one young man). We shared information, tips and tricks, coping techniques, doctor’s names, medications that worked. During the second semester of my freshman year in college my CRPS had come back. I was in a stressful housing situation and my classes were difficult and I couldn’t always make them due to the pain. One of the girl’s home were closer to my school than mine. I would take the T or she and her mom would pick me up and I would spend the weekend there both receiving love and understanding. I also got a break from my nightmare roommate. At the time I did not think of the inconvenience that that may have been for them. They never said a word and I was there pretty much every weekend for at least 2-3 months. I don’t even have the words available to thank them all for that. They made me feel like I was part of the family, a welcome addition and not a burden. I could finally relax there.
One of the other girls is someone I have been close with for years now. We visit whenever we can and I am always down there during her winter break. Another, I speak with when I can and I wish I could see more often. In truth, I wish we could all meet more often but as we have gotten older we have jobs and commitments as well as a growing list of medical problems. Continuing to have these friendships means the world to me.
All four of us in the original group had pain in our legs (all the right one!).
In some ways CRPS was the beginning of the end for me in terms of being able to live my dreams. It fueled the fire for other health issues which made me regroup, and in all honesty I am still trying to figure it all out. At the same time I have met some amazing people (mostly women) who have this disease. They are supportive, driven, compassionate warriors fighting for everything in life that matters and I am so grateful that I get to know them. Without CRPS we never would have met, Does that make having CRPS “worth it”? I’m not sure about that, but knowing them certainly makes it all bearable, inspirational, and sometimes downright hilarious.