Chronic Regional Pain Syndrome .... — Scope | Disability forum
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Chronic Regional Pain Syndrome ....

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Saffy2000
Saffy2000 Community member Posts: 2 Listener
edited October 2021 in Aids, adaptations, and equipment
Hi ... I was tootling along on my mobility scooter in 2017 when one of the wheels hit an obstacle under a load of leaves that were on the pavement and it tipped my scooter and myself sideways onto the main road, right in front of a car!  (Yup, still having nightmares)

After two weeks and many tests in Hospital, I was told I had CRPS or Chronic Regional Pain Syndrome ... it’s where the brain reacts as though the injury has just happened ... it’s three years later and I’m still in pain.  in fact it’s worse, if anything.

I wondered if anyone else here had been diagnosed with this and just how did you ‘get your head around’ something like this. 

I have physical symptoms ... my hand either feels like it’s being held in a bucket of ice cubes and not being able to take it out, or it is red and sweaty and feels like it’s on fire.   This pain never goes away.  My pain medication that I take for other issues, helps a little, but the persistent pain of CRPS is like nothing I have had before.  

I already have failed back syndrome, sciatica, back spasms - now my hand spasms and I wake with it in a claw ... my mental health isn’t good at all, and I feel like I’m swinging by the seat of my pants some days ...

Anyway ... that’s part of what’s ‘disabled’ about me ... other than that, I’m tickety boo and hope that in my posts to come, I can help make people smile a little. 
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi @Saffy2000 Welcome to the community, I had a fall off my scooter into the road but luckily it was the road outside my house so no traffic but it is a scary thought

    I am sorry for the pain you are getting I havent heard of that one before but I am sure other members may have some insight 

    Have you been referred to a specialist at all or maybe a physio could help IUm not too sure

    I look forward to seeing you around and hope you get to help
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
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    Hi @saffy2000 and thank you for telling us more about you.  Chronic Regional Pain Syndrome is something I'm not familiar with and your description of it sounds very painful! 

    Like, @Janer1967 says - are you getting any support with it?  I wonder if physio, massage or referral to a pain clinic could help?

    I hope you are feeling okay today  :)
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  • nikkif
    nikkif Community member Posts: 60 Courageous
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    I have been diagnosed with this in my left leg after a fall indoors on my knee this was 8 years ago after several years and every test available I was diagnosed with crps and it is a vile condition. And it has progressively got worse at 1st it was snuggling pain but now 8 years later I can barely use my leg for more than 15 mins otherwise the pain and swelling is excruciating. I have been sent to pain management but no medication so far has helped and I'm wary about starting morphine because if its addictivmess. Unfortunately as far as I have researched there is no cure and managing it is extremely difficult. The neat advice I can give is to just try and find things that work for you through experimentation and I hope you manage to find some sense of relief. 
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    edited September 2020
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    It sounds like a very uncomfortable condition @Saffy2000 and @nikkif. I'm sorry to hear you haven't been able to find any treatments that have had a significant impact. 

    The only potentially useful resource I could find is this page on the NHS website, but otherwise I think massage or physio therapy are both good avenues to pursue, as well as pain clinics.



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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Hi @Saffy2000, I have CRPS as a result of a fall a few years ago. I can really relate to what you've said.

    Here are some pain resources. I appreciate that they won't completely eliminate your pain and what you feel is real. However, there is some great information about managing pain which could be helpful.

    Scope

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