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

2016-06-23

JACKY’S CRPS JOURNEY

 

We have a 2nd CRPS story this month. This is the CRPS journey from Jacky in UK.

 

Jacky has CRPS is her hand and it has since spread to her face. Originally Jacky hurt her hand in September 2015 and was diagnosed on New Year’s Eve 2015. This is Jacky’s CRPS journey…

 

Hi, I’m Jacky from Cornwall. I am 64 years old and I broke my wrist very badly in September last year.

I was put in cast but it didn’t feel right for all of the 8 weeks. I had several follow ups at the hospital but they thought everything was ok, despite my puffy fingers. The day I had my cast removed I started to feel like I was passing out, this feeling lasted for a long time and I was terribly shaky. No matter… just trauma I thought…ha ha ha! I could never have been more wrong.
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Not even a week later I was in the kind of pain that I can only now describe as simply horrific. I went back to the fracture clinic and was diagnosed on New Year’s Eve 2015 with RSDS.
 
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The consultant was really lovely and told me it was “probably best to go home and google it, Jacky.” He said “it’s hard to explain and it’s so complex.” So, I did … and for sure he was right! I had all the signs and symptoms including the madness!
 
Jacky's CRPS journey - hand symptoms

Jacky’s CRPS journey – hand symptoms

I am a psychologist and I realised my cognition and emotional state were impaired. I simply did not feel the same any more. It has now spread to my face and I have recently had to have an extraction in hospital and it still feels like the tooth and abscess are there. It’s a crazy condition. I get flares when I do too much and it has also exacerbated my fibromyalgia to the point when some days I just can’t walk. It’s interesting that I am also hypothyroid and I have had this since I was 27. I have noticed that quite a few people have this as well as CRPS.
 
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I have felt at times suicidal and taking pain meds was very hard for me. To be honest the ones I can take do very little anyway. I just try and manage it by going into a quiet place when it’s really bad and I can’t stand any noise or light, which can be for a few days. I think the hardest thing has been the reaction of other people. I realise that people don’t understand, I really I do.  But they can ask, they can acknowledge you aren’t the same as you used to be. I have felt at times that even those really close to me thought I was faking it. Why would you fake this…really?
 
Jacky's CRPS journey

Jacky’s CRPS journey

 
I don’t know what the future holds. I still have very little use in my hand but I use a mirror box and it has helped. My shoulder is still really painful, but I do my physio every day. The consultant at pain clinic was very clear that there is no cure and at the end of the day only exercise will fix you. He said that you will become your own doctor and I admired his honesty. He is only the second person I have met who had heard of it. I am glad you all exist. It helps a lot, doesn’t it to know we are not alone? I intend to go on the Burning Nights forum soon as I have lost my confidence a lot.
 
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Thank you for the opportunity to share my story. I know some of you are much worse than I am but I wish you all well.

Much love to us all,

Jacky

 

Thank You Jacky for taking the time to share your CRPS journey so far with us. CRPS sufferers have received their diagnoses in a number of ways and time scales which can vary a lot. Please share Jacky’s CRPS journey and feel free to make a comment below. Will you share your CRPS journey either as a sufferer or loved one, carer or family member? Email your CRPS story to us!

  Written: 23/06/2016

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. Caroline Sturgess

    I too have CRPS in my left foot , I agree with everything that has been said . My latest setback is that my GP who is not sympathetic at all has said if I am not happy with there service perhaps I should find another Dr . I have just moved to another Practice . I do Mirror therapy & desensitisation every day , I try to do it 5 times a day , I think the key is movement , I am taking so many drugs but now realise that actually they are making me worse so with the help of my Pain Consultant am going to try & reduce them & have just had a Lidocaine Infusion which seems to have helped my pain levels . I am also seeing a Healer & feel that for the first time am seeing the light . This condition is well I call it craps , the worse thing ever , people do not understand , I have found acceptance that there is no cure the hardest thing , but we must not give in because our life is precious , so good luck Jacky , remember you are not alone . Caroline Sturgess

  2. jacky henderson

    Thank you so much for your kind words…i am catching up on all the news here today , its a good feeling to belong to something, to be able to read the journeys of others…its so isolating this condition…i am still understanding how it works…hahaha….thats gonna be a loooooong time…love to everyone

  3. Anjay Juckiewicz

    Thank you I also have CRPS in my wrist, I wrote my story last month CRPS- will not define me, please if you can read it, I chose a different road due to being dependent on prescribed narcotics, my new road was naturopath, she is amazing. I mention this as I got the impression you did not like taking medications.
    Take Care.

    • jacky henderson

      i am just trying to find your story Anjay..thanks for the heads up…all the best to you too

  4. Irene Bull

    Just a simple thing breaking your wrist it’s so easily done. CRPS is so cruel it just take over your life. On Burning Nights website this group is so supportive to other sufferers. I just wish that one day a miracle would happen and someone finds a cure for this terrible thing called CRPS.
    I wish you all the very best.

    • jacky henderson

      Thank you Irene..yup..a miracle would do very nicely thank you…but I am not holding my breath..are you..all the very best to you to

  5. Christine Fleming

    Welcome Jacky to the Burning Nights support family. As a parent of a sufferer I have seen the how CRPS affects you. But the realisation that you now have a family where there are others who can relate to your pain,concerns, and need for answers will help. My best wishes.

    • jacky henderson

      Thank you so much for your kind welcome Christine….i am still finding it a little tricky talking to anyone about it…so many questions to sufferers…do we do that here..i havnt a clue how to use the website..my best wishes to you too..

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