Remember, It Is Your Body, It Doesn’t Belong to CRPS

Published on April 20, 2022 under RSDS General Info

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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  1. Al

    I am glad for you. Just wish I could be doing so well. Unfortunately, my body and pain belong to my doctors. I had an operation back in 2014 and proceeded to get worse and worse. I am on the verge of being unable to do anything. Have tried every procedure that the pain clinic had to offer, to no avail. I am on opioids which is the only thing that has helped, made life somewhat manageable. Had spinal stenosis, degenerative discs severe arthritis and severe chronic pain. I do not even care if I die. My treatment never changes like they just don’t care. I see it as cruel and unusual punishment, torture, but why?? Don’t care what I have to take or do, for I only have my life to lose. I swear that I am being pushed/assisted into suicide. Medical society/professionals seem to be uncaring and useless. Sorry for the rant, guess I needed to vent. Do not know what to do.

  2. Linda C.

    RSDS….CRPS…. Chronic Pain Syndrome….by whatever name its called it does tend to control your life and its horrible!
    A physical therapist first suggested I had it, about 2 or 8 weeks after my foot surgery. She told me the symptoms and pointed them out….I was in denial,which sounds strange, but I was also allergic to nickel. I suspected the titanium screws and plates had enough of it to cause the problem and if I could just have another surgery to remove them I’d be fine. That was in Feb 2021! Boy was I ever wrong!

    It wouldn’t be the last time I’d be wrong either=/ I did accept the opiods in the beginning, I was wrong to accept those…..that lasted all of 3 days because those made me feel so sick! I have had to be my own advocate and learn to speak up ,to insist on what I could or couldn’t do. I also had to research alot to convince myself this was happening. I knew I felt a ridiculous amount of pain and My foot and legs were so hot and swelled up ,but I blamed it on the meds. Yes it did turn out I was sensitive to meds that were perscribed too and otc didn’t work anymore and even cold water felt hot(?) ,but I still couldn’t fully believe this was true. Especially thinking to myself really? My pain feels horrible and it always got worse in the afternoon plus i’d sweat uncontrollably ,but I just have a low pain threshold . Surely there are other people with worse pain conditions than this?

    Like I said ….Denial.
    However; one thing I couldn’t deny was this took over my life. I was only getting worse, I still can’t go back to work, I can’t move the way I was did(not even wear close toed shoes for more than 2 hours most of the time. And my work consists of therapies and modalities now. I’m too afraid I won’t be able to move f I don’t do them and too afraid to go out independently with the loss of balance. CRPS has changed the way I decide to eat,when I can eat, if I can sleep and when ,where, how or if I sleep. It controls every aspect of my life…even when I’m trying to control it to go into “remission”,which I can’t seem to do. And now the symptoms are in the other foot and other places.

    I wish you and all others going through this the best! Keep on keeping on every one! And most importantly accept that it can make you change life, and maybe that will be a good thing!

    I eat healthier now, I move at a slower pace and live a life with purpose, I pray with intent,not just for myself and my family..but for others. I was a person who was sympathetic before, but now I understand and have empathy….CRPS has made life unpredictable and somewhat impossible, but its also made me appreciative of things I took for granted. Things get more challenging, and they won’t go back to “normal” , but I just have to reach out more , get more creative , learn to be more accepting instead of in denial!
    Best wishes to all in the same

    1. Darryl Gray

      Hi Linda. I feeel like this website was sent from God. I was diagnost with CRPS 2 1/2 months ago and for the last month or so I feel like I have been all alone fighting this terrible, painfull disease. I’m glad that I feel that I may of found a place where I will be understood.

  3. Lucille Hadden

    I was diagnosed with CRPS after I had carpal tunnel surgery in 2017. It took 1 1/2 year to use my hand again, after PT and months of the worst pain I ever had. My hand is still not 100% better. It still hurts, still swells, still gets stiff. However, it is so much better, I won’t complain. A year ago, I pulled a muscle in my ribcage, and developed CRPS in that area. I hurt for months, with no help from doctors. They didn’t even address it. Then in January 2022, I chipped a bone in the top of my left foot and 3 days later, my foot froze up, swelled up and was so very painful, I couldn’t walk. I still can’t walk. I started PT as soon as I felt well enough too, but when someone says they just get up and walk, I don’t know how? I couldn’t if I wanted to. I wouldn’t wish this on my worst enemy. I have fought depression. I have had every test there is, taken meds that don’t help and have just resigned myself that this is how it is now. I have become protective of my good foot and good hand because, what if I hurt them and develop CRPS. I use CBD salve and oil. It helps somewhat, but nothing really helps for long. There has to be another answer to chronic pain. Thank you to all who are positive. I am not so much at present. Ask me again in several months. If I walk
    again, I’ll be shouting for joy. Peace.

  4. Jon

    Oh boy…when I first got diagnosed they put me on fentanyl patches, lyrica, amitriptiline, baclofin, norco and topamax. It sucked. I was a zombie and I hated it. Fortunately, I got an allergic reaction to the adhesive on the fentanyl patch and had to stop. I spent most of my years with CRPS thinking it was hopeless. I then got off all opioids and reduced my other meds by half. I now use cannabis and Kratom for pain. I also decided enough was enough, CRPS won’t control my life. I just started moving. Doing what I used to do, at a slower pace at first. Then dive right in! Life is too damn short to spend it on the couch in front of the TV. I hope this advice will help. You can contact me anytime at jkbwells@hotmail.com. That goes for everyone!

    1. Lorna

      Thank God for this blog! I have been diagnosed after wrist surgery in 2020! Unbelievable……what made me almost go psycho was the traveling aspect of the pain….from my right arm to the left arm…most terrifying my left foot gets involved…..making walking difficult!! I am lost for words, cant work in my profession as a pharmacist!! This is a nightmare!!

  5. Valrie Ricketts

    I am deeply touch by your blog! I got it in my left hand and later experienced symptoms in my right. I had anexcellent OT who started me off working on the mental aspect. Like you I only feel it when I over do it or other changes like climate,stress etc.

  6. Christina Kelerchian

    I am so sorry to hear about your CRPS/RSD. My sister has full body as well. May I ask what you do to combat the pain? She is fully medicated also with fentanyl. She has totally let the disease take over. We are lost on how to help. Many thanks

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