My CRPS Journey — Complex Regional Pain Syndrome
Allow me to introduce myself.
Jacinda. Young. ish. Well, in my h-hm-early forties.
I’ve had jutty-outty bones on my feet since I can remember. These bothered me every winter so finally I decided to do something about it. Medical insurance in tow, and a visit with a top surgeon who said I’ve got a bit of a bunion going on and I was booked for surgery for 27 January 2015.
I went in blindly. My surgeon didn’t talk much about a recovery period or what to expect.
My bunion surgery was awful. I had not experienced pain like it. Neither had I ever been so debilitated in my life. I went through four weeks of being quite useless to anyone on my back with foot elevated. Being nursed, using crutches to get 4 metres to the toilet. Bathing infrequently because it was so darned difficult. Spaced out on morphine, codeine, and other things that ended with -ine.
After week 4 the pain began to subside a little and I could weight-bear on my right foot ever so slightly. There was this awful biting pain around my big toe which drove me nuts. It was all-consuming when it was there. Fortunately it only lasted minutes at a time then it was gone for a while. Dr Google told me it was probably the result of a little nerve-ending being nicked during surgery. Facebook friends told me it meant healing was happening. Meals on wheels were weaned and I could tolerate short stints upright. I adjusted to daily sit-down-showers which took a while to set up and pack up but really, what else was there to do anyway while I was incapacitated?
On week 6 the plaster cast came off. By then I could hobble without my crutches and I was looking forward to having a normal foot again.
After the removal of the cast, and all the disgustingness that goes with it, I started noticing really weird things. Apart from my foot being super-weak, the sole of my foot was extremely sensitive to the touch. I couldn’t really touch it on the floor. Back on crutches. My foot was also much much redder, and hotter, and sweatier, and stickier, and the hair was growing thick and black. Had the surgeon played a trick on me and replaced my almost-normal right foot with someone else’s problematic foot? This wasn’t my foot. I wanted my foot back. And quickly.
The weeks passed, but I wasn’t getting the healing I was expecting. I was still limping excessively, which was putting strain on my back and the rest of my body. I couldn’t even tolerate my foot inside the sheets, and was still having to elevate my foot wherever I went. I couldn’t walk far. Grocery shopping online. Any shopping online! It was painful to drive. It was painful to take my child in and out of preschool. It was painful to do anything. I was embarrassed about my limp. I was embarrassed about not being able to wear shoes that matched my outfit. Silly things. But they annoyed me.
Two of our friends used to be physiotherapists. One said one day, “It looks like you’ve got RSD.”
My heart sank. Complex Regional Pain Syndrome was the replacement title for RSD (Reflex Sympathetic Dystrophy). Anxiety set in. Brain spinning. Future gone. Or was it?
My follow-up appointment with my surgeon at 12 weeks post-op was an interesting one. I gave him a list of all my symptoms. He examined my sticky, sweaty, hot, weird-coloured foot. He looked concerned. I told him I needed him to write to ACC and lodge a claim. I told him I can’t afford to keep paying $140 per visit if I had a complicated foot, or CRPS or whatever. I told him I needed to go under the public system. I told him that having CRPS was not an option for me. He told me, “If you think you’ve got CRPS, then you’ll have it.” Unhelpful, but I knew what he was saying. “Let’s wait a few more weeks and see how you’re going.” In the meantime here’s the name of a private pain specialist I know. Did he not hear me when I said I have no more money and needed to go through the Public System?
Week 16 follow-up (another $140 later), and I’d had a good couple of weeks. Low pain. Toes could now touch the floor from swelling going down. Still couldn’t fit desired shoes. Still red, hot, sticky, sweaty. He said, “Whatever you’re doing, keep doing it. See me again in a few weeks.”
When I grow up I want to be a $urgeon.
My few good weeks were followed by a couple of bad weeks. Swelling back. Pain back. Limp worse.
Enter my quite-the-high-up-in-the-world-of-medical-academia friend. Our families have been friends for several decades. He was following what progress of my foot and was offering what support and wisdom he could along the way. He was sure I had CRPS too. I asked if he would come with me to my next follow-up with the surgeon. He said sure (which is a BIG deal, as he really is a busy person, so for him to take a couple of hours out of his day was very kind).
At my 19 week post-op, follow-up with my surgeon, Dr Cool stood up with me as the surgeon called me in. It was quite an uncomfortable 15 or 20 minutes (for the surgeon). However, the surgeon finally conceded that yes I did indeed have CRPS (albeit MILD) and he also got the ball rolling with ACC (applying for treatment injury cover), signed me up for PUBLIC pain and physio treatment, and after Dr Cool asked ONE question, Surgeon also agreed to see me in the public system so it wouldn’t cost me anything should I have to see him again. Everyone needs a Dr Cool in the family.
So now, I’m at 24 weeks post-op and I’ve seen a Physiotherapist who specialises in pain syndromes like CRPS. It’s a fascinating disease. I’ve always been a great admirer of the brain anyway, so to be someone who needs to start re-connecting neurones is quite an exciting challenge. So I’m armed with a myriad of brain exercises and a few little foot exercises.
At 24 weeks post-op I have SOME pain still. It comes and goes. It’s really only sore when I walk on it. Sometimes when I’m resting, I’ll get the odd shooting nerve pain that triggers a shudder. My foot HATES the cold. I’m glad I live in Auckland and not in Christchurch. It is really sticky. It picks up fluff from the tiles and carpet. It is still swollen. My toes STILL don’t touch the floor. It gets fiery-hot when it’s hot. It’s like it doesn’t have a working thermostat. It’s red, purple, blue, white, yellow and all the shades in between. The toenails have all but stopped growing and the hair that springs out of the end of my foot is hobbit-like. Tried waxing. Blood everywhere. Fear not! I now shave them. I still can’t walk far. Supermarket trips need to be carefully planned. Holidays are put on hold. Exercise is put on hold. Life still happens but it is limited.
It is frustrating. However, when I look at the blogs and posts of other CRPS sufferers, I am sincerely grateful my situation is not worse. I’m a mild CRPS sufferer. I have a dodgy foot. It will heal one day. I’m okay with that.