JOANNE’S CRPS STORY
Sharing your Complex Regional Pain Syndrome journey can help you learn to cope with the condition. In this blog we discover Joanne’s CRPS story.
Joanne is from Wakefield, UK and has suffered with this debilitating chronic condition, Complex Regional Pain Syndrome, since 2009. Here’s Joanne’s CRPS story…
My story goes back to 2009 when I started to experience excruciating pain in my right hand and wrist. I had numerous appointments with my doctor who thought it could be Carpel Tunnel Syndrome or RSI so I was referred to the hospital for tests, but the results for both came back normal. I believe that my condition stemmed from when I had a car accident around 14 years ago and was off work for 5 months with severe whiplash. I was told at the time that I would suffer later on in life, but certainly didn’t expect this.
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Thankfully my doctor at the time had experience with pain management so was able to diagnose me with Complex Regional Pain Syndrome (CRPS). He advised me to do some research on this as it was quite complex, which I did and I had a lot of the symptoms.
I was under the care at our local hospital in Wakefield, but I am now under the care at another hospital which is out or our area in Bradford. Over the years I have received guanethidine blocks, stellate ganglion block and epidural injections. I have been on numerous medications including gabapentin, pregablin, nortriptyline, buprenorphine patches all which didn’t have any effect on the my pain, which by this time was getting a lot worse.
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I have found with this condition that my personality has changed I feel that I am not as outgoing as I was, I get angry when things do not go well and I am having to rely on my family to help me with cooking, cleaning etc. I struggle day to day when the pain is really bad as from the outside I look fine but inside I am suffering and it is hard explaining what the matter is with me. I also suffer with sleep when the pain is bad. Over the years the pain has gradually moved up my right arm and in to my left arm and neck. However, in 2014 I was granted funding to have a spinal cord stimulator fitted, which was the last resort for me. I trialled it for 2 weeks prior to having it fitted which was a god send, the pain wasn’t half as bad. I finally had it fitted in April 2014 which was such a relief, but later on in the year they had to relocated as the wires where close to my spine and causing more pain.
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My back is covered in scars from the various operations. The stimulator covers my right arm but recently I have had it so that it covers both arms. At the end of 2015 I was diagnosed with vestibular migraines which means I have pain in my neck but not my head, these are terrible when they flare up. I am waiting for some more injections into my neck hopefully to help with the migraines if not my specialist is looking at inserting another stimulator to help with the constant pain that I am in. I am very grateful to sites like this as it means that I am not alone and there are others who suffer with chronic pain.
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I still manage to work full-time and go the gym with my partner. Both my partner and daughter have been fantastic as my condition has affected not just me but us as a family but we are all still going strong. I hope that my story will help other fellow sufferers.
Joanne from Wakefield