Written by Jon Wells for the RSDSA blog.
My name is Jon Wells and I have had full body CRPS for ten years now. I contracted the disease after have surgery on my right shoulder. It started in my right hand and arm, but quickly spread to lower extremities and beyond.
Needless to say, CRPS completely changed my life. I went from an active person to someone loopy on meds all the time and sitting on the couch all day. Every doctors appointment meant adding another medication. At one point I was on two opioids, fentanyl being one of them. These were very dark times for me.
What I wish others that don’t have CRPS would understand is that this is mostly an invisible disease. Just because we look “great”, doesn’t mean we are not suffering. I was good at putting on a facade of doing “ok”. Another thing I would wish is not assuming that “exercise” and a good massage will do wonders. People need to realize we cannot be touched without experiencing horrific pain.
For those that have been newly diagnosed, do your own research. Also, you need to be your own advocate. If at all possible, avoid opioids. This may sound controversial, but I was much better off without them.
What I finally did for myself was to attack CRPS on a mind/body level. I had to get my butt off the couch and say no to CRPS. Remember, it is your body, it doesn’t belong to CRPS. CRPS is an intruder, not a guest. I know this sounds difficult, but it changed the way I look at pain.
For those who have had CRPS for years, the disease has become the norm. It was for me too. I then decided to kick CRPS to the curb. I still get pain if I overdo it, but it is worth it to get up and just do something. Start slow at first, then jump right in.
Thanks for taking the time to read this. I hope you all get something out of it. Remember, you are much more than CRPS…
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