Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
DONATE
CRPS story - My Story

Joanne’s CRPS Story

2016-09-02

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.

 
Please Remember You are not alone

Please Remember You are not alone

 

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.
 
TO THE TOP
 
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.
 
Joanne's CRPS Story

Joanne’s CRPS Story

 
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.
 
TO THE TOP
 
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.
 
TO THE TOP
 
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.
 
TO THE TOP
 
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

  CRPS Journey  

Thank You very much Joanne for telling your CRPS story so far and how you cope in daily life. Please remember that you are not alone in this battle, we as a charity are here to help and support you when you need us. How do you cope with your Complex Regional Pain Syndrome (CRPS) on a daily basis? Why not share your CRPS story like Joanne and others have done? Contact us with your story and pictures.

  Written: 26/08/2016

LET’S SPREAD AWARENESS of CRPS! Burning Nights orange side version

About the Author
I'm a barrister, advocate & sufferer of Complex Regional Pain Syndrome (CRPS). I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. However I want to help all those affected by this devastating condition which includes those living with CRPS, their loved ones, families, carers and friends. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Christine Fleming

    Having CRPS is a life changing condition. As a parent of a daughter suffering from this terrible condition, it never ceases to amaze me how each one of you deals with it. Thank you for sharing your story .i have seen what a difference CRPS causes and how life changing it is to the person it affects and their families. But each one that tells their story brings a strength to others and to the families and seems to bring solace to the CRPS sufferer.
    Thank you Joanne for Sharing your story it is not an easy to do. But I know that by doing so you and your family will not only gain strength but also help to bring awareness of this dreadful condition. You are not alone in your struggle and Burning Nights is a wonderful platform for help and support.

  2. Lindsey wilkinson

    Your a very brave lady Joanne, I don’t physically know how bad the pain is myself but my daughter suffers with CRPS and I understand how difficult daily life can be, thanks for sharing your story, all sufferers are true inspirations x

  3. Ireneb

    Lovely story Joanne and wish you well for the future. CRPS is a dreadful illness and dibilitating without any doubt. Also it does affect the family as it is very difficult to watch a loved one suffer.

    • Joanne Archer

      Thank you for your reply. I am just taking each day has it comes and also making my family aware when I am in a lot of pain.

  4. Ann day

    You are doing a fantastic job and I always look on the web site one day i hope to get to one of your functions…I have got crps in my hand and arm ..a year past may I had a hip replacement it is a success but my word my ankle foot and toes are constantly numb now and buzz most of the time since ny op I also inherited plantar fasciatis I have seen podiatrist have massages but got to say the pain is getting worse walking is so painful…I so miss not doing the walks with friends and get very down but manage to hide it..all my hobbies now are sitting and the weight is plonking on however a young girl very close is now fighting for her life and I get so cross at myself for moaning…anyway got that off my chest ….keep the good work I enjoy the website..a

    • Joanne Archer

      Thank you for your reply and sorry to hear that you are suffering too. You just have to each has it comes which is what i am doing.

Leave a Reply

Accessibility
Call Now