Last summer the rare neuro-inflammatory disease affecting my hand and arm seemed to be getting slightly better, so I became very hopeful that it was starting to go away. I’d been told that the disease can disappear in some people (or spread, or jump to the other arm or to the legs), although no one knows why.
So I suppose I became too optimistic, and convinced myself that my CRPS (Complex Regional Pain Syndrome) would just go away – because it seemed to very slowly be getting better.
But as soon as the weather got cooler in October, it got worse again. It felt as though all the progress that I thought I’d made – from late March through October – just got… instantly erased overnight.
It took a few weeks for the reality to sink in. The disease hadn’t improved since March. It had just seemed that way because some of the symptoms of this disease lessen with heat. We’d had a very hot spring and summer last year. Once the spring flooding ended, at any rate.
The fact that heat can help patients deal with CRPS symptoms is fairly well-known, within our small rare disease community. Heat sources like dry saunas, heat packs, and hot baths have been recommended by my doctors.
My physiotherapist uses a hot paraffin (wax) treatment on my hand and arm after each session, to help lessen the post-treatment spike in my pain levels.
Once I realized that the disease wasn’t getting any better, I finally had to deal with the fact that it probably won’t just disappear. For the first time I specifically asked my specialist about the likelihood of spontaneous disease or pain remission.
He wasn’t optimistic. It seems that if it was going to happen, my CRPS would already have resolved; gone away. That conversation with my specialist was just before the holidays, which was bad timing. My husband had to work crazy hours over the holidays, because of the fiscal year-end at the company where he works, and I had 2 weeks off.
So I had at lot of time hands, to dwell on this disease and its impact on the rest of my life. I wasn’t depressed, but I was bitterly disappointed. I didn’t want to see anyone, or do anything, throughout the holiday period and the start of the new year.
To make things worse, I started having terrible pain flares again in January. I was back to vomiting from pain a few times a day – even at work. It took a few attempts, but my medical team finally got the pain flares somewhat back under control.
And I came to a decision. I’d already been trying to find ways to live with CRPS as best I can, but now I’m going to try to push even further. There are many activities that I’ve stopped doing since I broke my arm and ended up with this neuro-inflammatory disease, but I’m going to try to find ways to do them again
I’m going to make a real effort to adapt them to what I can do – rather than just accepting that I can’t do them anymore. So… starting with the spring thaw this year, I’m going to try to find ways to get back to doing some of my previous activities, even with CRPS.
I’ve been able to do this for cycling, because that outdoor sport is so important to me – to who I am. So now I’m going to actively take that approach for, well, just about everything.
Wish me luck! And thanks so much for following along, on my patient journey ‘-)