Not so long ago, I heard myself complaining that I’m not “getting any treatment” for the CRPS. And while navigating insurance refusals (first to accept the diagnosis, then to provide recommended treatment) has certainly been – well, frustrating, to say the least – the truth is, I’ve been doing everything I can to improve both function and the discomfort I’m living with. Sometimes I need that reminder.
So here’s what I’m doing to manage my CRPS symptoms, six months into the journey:
First, and most importantly, physical therapy. At first it was just to rehab a broken arm, but as CRPS signs became more obvious, my therapist started adding additional things to address sensitivity and neuroplasticity.
- Stretches for my fingers, wrist, elbow and shoulder are done throughout the day with the recommended Home Exercise Program (HEP) my therapist designed for me. This helps me maintain and improve my range of motion.
- Strengthening with light weights (for me right now that means 3 and 5 pounds) helps address weakness, and should help keep my bones strong.
- There are specific movement patterns I follow as part of my rehab to address some of the neuro stuff. I won’t pretend to understand exactly what’s going on, but I trust my therapist and happily follow them.
- I’ve recently added light cardio to address my mood and overall fitness. I shoot for 20 minutes on a stationary bike every day.
Just as importantly, education has completely changed the way I understand what is happening in my body. The better I understand, the more in control I feel (or at least the better I am at recognizing what I can and can’t control!). When I couldn’t find local resources, I moved online, first discovering the excellent resources from NOI Group, which then gave me the vocabulary to further research pain science education. I found the UK-based Pain Toolkit very helpful, as well as a six-week pain course from Macquerie University in Australia. I’m starting to dive into medical journals as my vocabulary increases, so I can follow more recent research.
It was through the NOI Group that I learned about graded motor imagery (GMI) and mirror therapy, which have also become a cornerstone of my (self) treatment. I use their Recognise app multiple times a day to help train my brain away from pain.
One of the most difficult symptoms for me is the allodynia, or hypersensitivity. Clothes touching my arm, or even just resting my arm on furniture or a blanket can be quite painful. I do desensitization exercises every day, rubbing my arm and hand with different textures – including a special brush – in the hopes that it will decrease the sensitivity. I use vibration to address some neuro stuff. I’ve also been seeing a massage therapist once a week, who not only helps address some of the tightness in my muscles, but whose touch is also a desensitization exercise in and of itself.
Managing stress is an important part of everyone’s life, but especially in chronic illness. An important tool I developed when learning to live with trigeminal neuralgia is a mindfulness/meditation practice. I (usually) sit for 20 minutes each day, and will often use these skills with little check-ins throughout the day as I need to reset. I know how to breathe through pain attacks. I also use hot baths in a dimly-lit room to help relax (and to get clean, since showers can be pretty uncomfortable!).
None of the above requires access to a physician, and – with the exception of a qualified therapist setting up my HEP – are all things I do for myself without medical intervention.
I do, however, take medication. While I haven’t added anything specifically for the CRPS (although I did briefly use narcotics for post-surgical pain), the meds that help me manage the TN do, I suspect, help keep the CRPS manageable. It took a lot of trial and error, but I have an anti-convulsant (oxcarbazepine) and an anti-spasmodic (baclofen) that I take twice a day for neuropathic pain. I also use medical cannabis – currently the only analgesic in my metaphorical cabinet.
I realized that when I’m feeling despondent, howling at the moon that I’m not getting any treatment, what I really meant was that I’m not feeling the support of health care practitioners. Living with pain is tough, and I do need support. But what I’m learning is that I don’t necessarily need amenable insurance – or even physicians – to provide that, either.