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…
[Tweet theme=”basic-full”]Why not share Jacky’s #CRPS story? Will u share your story either as a sufferer, carer or loved one? www.burningnightscrps.org[/Tweet]
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.
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!
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?
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,