Originally posted 11 November 2019
I developed CRPS in my foot 2 years ago, after a soft tissue injury caused by running. I was lucky to be diagnosed really early on, especially when compared to many other CRPS sufferers who often go undiagnosed for years. I had been in pain for several months, and had used crutches, a moonboot and a Darco shoe to take the weight off my foot along the way, when one day I noticed that the sole of my foot had black patches on it.
I went to my GP the next day, with my foot still black in patches. He immediately recognized it as CRPS and advised me to go back to my orthopaedic surgeon, with a note from him. The orthopaedic surgeon prescribed some medication for CRPS, and referred me to a pain specialist, and that’s how my whole journey with this nasty disease started.
CRPS is Complex Regional Pain Syndrome, it’s a progressive neurological condition that affects one or more extremities, and can go full body. It usually develops after a minor injury. It is characterized by a constant burning pain – various levels but always there. Many healthcare professionals do not know about CRPS, nor its signs or symptoms. It is not a psychological illness, but some people with CRPS do develop psychological problems, for various reasons, including prolonged exposure to pain.
The impact CRPS has had on my life is huge, and nothing I could have ever imagined for myself. At the same time though, it’s largely an invisible illness and many of my friends and colleagues are unaware that there is anything wrong with me. I used to love walking everywhere at speed, and enjoyed running. I can’t do either of these things anymore. Any distance over a few hundred metres makes my foot start to ache, and if I push it too far, it sometimes spreads to my other foot. I can’t keep up with my family. I stay behind sometimes because I feel like I hold them back.
I’m always tired, and think way too much about my pain levels. It’s so intrusive, there’s no getting away from it. I’ve often thought about just giving up. My emotions are always so close to the surface, so I’ve lost any emotional resilience I once had. I feel tearful at the tiniest of setbacks, and have to work very hard to keep it together so no-one notices. I never want to go out in the evenings because my foot burns the most then.
The medication and inactivity has led to weight gain, and I can’t sing much anymore because a few medications I take give me such a dry mouth that my throat dries out too and it’s permanently sore. Singing used to be a huge part of my life, and not being able to sing is giving me an identity crisis.
The medication for CRPS is mostly pretty invasive. I’ve tried a few. One of them made me suicidal. Another made my brain foggy, made me have dizzy spells daily and ruined my eyesight among other things. I ended up with incredibly high blood pressure and a profound vitamin D deficiency too, both of which are linked to this drug. I was also prescribed a patch that you place on your skin near the affected area, for a week at a time. That controlled the pain quite well, but I became sensitive to them by the 3rd patch, and all subsequent patches left scars. I have about 8 square scars on my leg from these, and had to stop using the patches.
When I stopped taking one of these medications, I had terrible withdrawal symptoms and stayed in a bed for a week, and took several more weeks to get back to “normal”. I’ve managed to get onto less invasive medication – it doesn’t control the pain as well, but it’s a compromise I’ve had to make. When the side-effects of the medication are worse than the pain, it becomes easier to compromise! That’s not to say it’s been easy to find alternatives. Most healthcare professionals have been reluctant to prescribe anything seen as non-standard. I managed to find someone who was more open-minded, but by the time I did, I was near suicidal again because of the pain and it took me some time to recover emotionally.
I’m in an ok place at the moment. My case of CRPS is milder than most. I’ve shaken off the “bad” medications. Most of the time my pain is manageable. I’m a little bit in denial still, and sometimes I get upset, but I’m still working, which many people with CRPS can’t do. I’m still living, and it still feels like a life worth living the majority of the time. Spare a thought for those who are much worse off than me.
