Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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CHRIS’S CRPS JOURNEY

2020-03-11

CHRIS’S CRPS JOURNEY

Our next Complex Regional Pain Syndrome (CRPS) journey is from a  gentleman, Chris from Scotland.

 

Chris’s CRPS journey began when he was just 11 years old. This is Chris’s CRPS journey…

 

A Story of Hurt, Disbelief, Non-acceptance, Despair and Acceptance

I was aged about eleven (11).  We had gone on a family day out to visit a beloved Uncle’s aged mother in a luxuriant home in the City of Aberdeen, North East Scotland.  It had been a good day out.  Everybody in good form.  I remember sitting quietly in a corner playing with Lego, as was my want.  My legs were becoming uncomfortable; something that was happening at night more and more.  That feeling of dread came over me where the pain got worse and worse and made me cry. 

 

Big boys don’t cry. 

 

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Eventually with the pain increasing, I started blubbing.  Huge breathless sobs that had everyone looking at me.  My Uncle and his relatives had concern on their faces, my mother soon asking, “What’s wrong dearie?  What’s the Matter?”  Then, after a few hushing sounds, “Oh, it’s just his growing pains,” explaining away what was becoming one of my nightly adolescent secrets.  I had learned not to make too much a fuss about them as the pain was just brushed away as nothing unusual.  This was the first time they had erupted in the daytime.  I didn’t have access to the light and dark blue checked scarf which I furiously tied tighter and tighter around each leg at a time.  This had the joint effect of causing its own pain and seemingly cutting off the pain to the rest of my body.

 

Not until I was 17, lying on the family couch one evening, watching some 1970s family viewing on TV did the life-changing  attack happen.  I had not long started work in the local Bank of Scotland, University denied because of the expense of looking after me, despite grants being available.  A job in the Bank in those days was seen as a rung up the social scale.  Thank goodness in the end I endured the nineteen years there so I got the final salary pension; but that’s in the future.  I tried to get off the couch when, wham! – a blast of pain from my lower back to my toes put paid to any attempt to move.  After a dreadful night, I was escorted to the family GP (just across the street as it turned out) who helpfully suggested I “get a skateboard.”

 

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There followed 25 years of entirely the wrong medication and treatment.  I spent six (6) months in Raigmore Hospital in the nearby city of Inverness on a 32-bed Nightingale ward.  With that came this new-fangled treatment called Hydrotherapy.  5-days a week I was ambulanced across to the Physiotherapy Department in the new building going up around the old crumbling single story blocks.  It was like a day out from the ward.  Other than that, I spent the time in bed getting to know the staff really well and beginning years of insomnia – to have tea in the middle of the night with the young nurses.  The Ward Sister was a wonderful woman called Mary Campbell.  She came from “The Islands”, with that wonderful lilting accent.  You and the Staff did what you were told when she was around.  The ward was absolutely spotless.  Everyone took a pride in their job and the Ward.  Over the next ten (10) years or so I saw the decline of hospital standards first hand, despite moving to the newly built multi-story flagship hospital that is today wracked with outbreaks of Norovirus in both winter and summer.  But, I digress.

 

After leaving hospital, I continued to travel the 26 miles to outpatient appointments under the auspices of the Rehabilitation Department.   I was under a strange fellow who was also a Lay Preacher in his spare time.  I was introduced to him when he came to me on the ward and measured me lying down and standing up without a word.  I had no idea who he was or what he was doing.  The ward comedians kept telling me he was the undertaker.  His first idea was to give me a six (6) week course of Radiotherapy.  I kid you not.  After discussing it with my Father and me, it was decided to go ahead.  They proceeded to radiate my left knee.  It made no damn difference.  They say it was a small dose but who knows what damage it may have done.  I was then strapped into a back support for years.  As I grew older I started to rebel, especially when the pain wasn’t getting any better.  I simply stopped going.  I lived on a diet of anti-inflammatory medications, which also didn’t do anything to help Time and time again I was disbelieved and told I was imagining it or making it up.  The same old story when it comes to people suffering with chronic pain. 

 

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Eventually I was seen in a Victorian Psychiatric Hospital in Inverness and given a course of amitriptyline.  I hated them.  I had a raging thirst and put on loads of weight.  I eventually stopped these too and just drifted about with the GPs not interested enough to investigate what was really wrong until I needed to have an aortal-femoral bypass in 1995 at the tender age of 36. I stopped working at this time and drifted on until about 2009 when I started researching things myself and finding the strength to tell the Doctors what I wanted.  Unfortunately, after what was supposed to be a simple incisional hernia repair to fix a tear in my abdomen after my bypass surgery, I needed to have a bowel resection and lost nine units of blood, nearly dying in the process.  More depression followed but in 2015 after having come out of the depression due in part to Reiki treatment I formed the chronic pain support group – Affa Sair (Scottish for awfully sore).

 

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We now have nearly 300 members and following a successful campaign to have a local pain service
re-established are campaigning to have treatments carried out locally instead of still having to travel to Aberdeen, monitoring of the time taken for repeat appointments after procedures and bringing chronic pain to the forefront of people’s minds.

 

New Personal CRPS RSD Journey - You can do it

You can do it

 

These days the pain has got progressively worse.  Setting up the Group has done me the world of good.  I have my confidence back.  I am doing what I feel I was always supposed to do.  I understand my condition so much better.  I am no longer isolated, which has made a huge difference to my life and now have something to do other than watch endless mind-numbing television.

Chris from Scotland

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Thank You Chris for sharing your inspirational and positive CRPS journey and well done for setting up a much needed support group in Scotland. If anyone in Scotland wants to join Affa Sair support group please click on this AFFA SAIR link. 

 

Isolation is a major problem for people living with chronic pain or Complex Regional Pain Syndrome (CRPS / RSD). We, Burning Nights CRPS Support charity, run a regular regional support group in Manchester and we will be holding a support group in either Cambridge or Bristol on Friday 18 November. If you are interested in either the next Manchester or Cambridge/Bristol support group please click on the Manchester Support group event or the Cambridge/Bristol Support Group event.

 

Written: 26/08/2016

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About the Author
As the Founder of Burning Nights CRPS Support, I want to help all those affected by this devastating condition which includes those living with CRPS, their relatives, partners, carers and friends. I'm also barrister, advocate & have lived with Complex Regional Pain Syndrome (CRPS) since 2003. I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Chris Bridgeford

    Just a wee update to my original post.

    First of all thanks to Victoria for setting up this great group and continuing her fight to make CRPS better known.
    Affa Sair now has 380 members. We’ve met with the Scottish Public Health Minister and the National Pain Coordinator. We just hope this leads to a better understanding of chronic pain problems by those who make policy.
    I had a 2 year battle with DWP to regain my enhanced motability allowance. I got this back in January 2018 thankfully. Sadly though I had to give up my car as I am too sore to drive these days. I am getting a mobility scooter instead to take me to my Doctor’s surgery just down the road from me.

    I’ve had the worst winter ever with my CRPS. It is definitely affected by the weather. Every day and night has me moaning non-stop. Light and sound also affect me badly just now. Still positive though. What else can you do?

  2. Natalie

    Hi reading your story is heartbreaking but gives me hope …….my 17 year old daughter was a healthy happy teenager and then two weeks ago CRPS has stolen her identity……she has had no trauma no breaks nothing to give us a justifying reason why this has happened to her……she woke up two weeks ago with pain in her two big toes she has now been diagnosed with CRPS in all four limbs ….she can’t stand walk or function like she did ….we have been in hospital for 12 days the physio is diabolical and done on an as and when basis although they keep telling me how important it is for her to have it….I have a planning meeting today to try and get her home and to assess what she needs ie hospital bed commode etc although I’ve been told the waiting list for a wheelchair is huge so how do I get her about when she can’t walk? All I get is blank faces ….I have to give up my job to care for her but am told will not get any help as CRPS is under recognised! It took me two hours last night to try and calm my daughter down as the burning was so bad within the hour she had codeine oralmorph paracetamol ibuprofen gabapentalin and amytriptaline and still the burning was too bad ….it breaks my heart to see her in this pain as I don’t know what to do ….I’ve tried distraction techniques but they are not working……I’m so scared and she is so brace please any advice would be a godsend ….sending strength to all x

    • Victoria Abbott-Fleming

      Dear Natalie,
      Thank you for commenting and I’m sorry to hear about your daughter and all the problems you’re having. I can totally empathise with you and you don’t like seeing your daughter in pain.

      Unfortunately around 10% of patients with CRPS have no inviting reason for the cause of the condition. In some patients especially children and teenagers CRPS can be caused spontaneously.

      You can ask for an MDT or multi-disciplinary team meeting to discuss your daughter’s needs. Have you been referred to pain management or your hospital’s pain clinic? This is extremely important that you do get a referral.

      You can also ask to speak to the OT team or Occupational Therapy team who should be able to help you in terms of equipment for the home.

      Also there are a few specialist CRPS centres around the UK so depending on where you in the UK will depend on your nearest one. Unfortunately there are not many for the under 18’s. Bath RNHRD do have a children & young adult’s pain service which can be accessed via the NHS or privately.

      If you’d like to give us a call on 01663 795055 or email us please do.
      Best Regards
      Victoria

  3. Jo

    I totally understand your story , it sounds all to familiar. I’m sorry you’re going through live w this terrible disease but I am happy that you found an outlet that can bring you some comfort. Theres a little comment at the end of your story written by a barista. She said she’s a bilateral amputee due to RSD. Does anyone know this woman’s name or email ? I also have a prosthetic due to RSD and I’m at the point where it might happen to my other leg as well . I would like to ask this woman a few questions if anyone knows who she is can you please give her my email or can I have hers, thank you all and I wish you all days of controllable pain and good health. hopefully one day this dreadful disease will have a cure and it will just be apart of our life’s story. My email is j1122b@gmail.com
    Thank you again Chris for telling your story ?

    • Victoria Abbott-Fleming

      Hello Jo,
      My name is Victoria and I am the lady who I spoke at the bottom of the blog. I am the bilateral above knee amputee due to CRPS (RSD). I am also the Founder and Chair of trustees for Burning Nights CRPS Support charity. You can read my story on the Our Founder page Please feel free to contact me at any time you need to ask any questions.
      Best Wishes,
      Victoria x

  4. Rick Kelly

    Oops. Dx was later confirmed by 4 Drs. Just took 4 yrs:). Toast now:(

  5. Rick Kelly

    I’ve got news for people but unless you are functional. No one cares. Family included. CRPS is the new Leprosy.

    Pls do. I have full body and w most of the ugly autoimmune crap too. Also, many spinal deficiencies which most don’t acknowledge.

    Pain is bigger than any pill they have,…yet:(

    I lost my fortune and family. I have nothing but my stubborn soul and love of life. My own mother thought I was lying. Took3 yrs and 14 Drs to diagnose. I ended up doing the dx.

  6. Karen Gess

    What a difficult journey you have been on Chris. I am so amazed and thankful that you have been able to make it and work so hard at setting up a support group so that others don’t have to go through these things alone, thank you so much. I am so glad I have Affa Sair to turn to xxxxxx

  7. Chris Bridgeford

    Thank you Irene for your lovely message.

    Just a wee correction to the link in the article. Our webpage is at http://www.affasair.org

  8. Ireneb

    What an horrendous story Chris you have gone through a long drawn out process of pain. Glad to hear that setting up the group has done you a lot of good, I hope you have great success in the future with your grioup.
    All the very best for the future.

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