Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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Viewing 3 posts - 1 through 3 (of 3 total)
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  • #32889
    Anja40
    Participant

    Hi, I just joined. I have been suffering from CRPS since I was 26, due to a work injury. I had found my passion working with Autistic children. That was 14 years ago. It has spread into my right leg, and up most of my back due to an abusive ex. I feel like I’m just existing at this point. Most of my family doesn’t understand even though I have tried to explain it to them multiple times throughout the years.I have even sent them information from a CRPS site. My meds don’t alleviate my pain like they used to. Most days I just want to scream and cry. I’m trying to reach out to find people who understand.

    #32965
    LittleM
    Participant

    Hi Anja40, It would appear we are sailing in a similar boat when it comes to unsupportive, gaslighting, indifference and abuse from the people we care for and love the most. I understand and will listen as we’re definitely in similar situations. My pain and mountain of other symptoms are poorly managed and written off by dr’s who are very behind the science of crps. I hope you find something that works for you soon, perhaps talk other medications with dr’s? I pushing for pain relief patches as I now currently need 24 hour around the clock pain relief. Take care

    #35159
    Angela Burns
    Participant

    Hi both.i have been in a similar position .completely disbelieved at work . Struggled to get my gp and physio on board and I work for the NHS,go figure. I have a brilliant psych nurse and I have now gone to my local pain clinic. I really wish I had gone years ago. I have been on gabapentine since 2014 but it just keeps the edge off now . Can’t help with flare-ups. The lady at the pain clinic suggested lidocain infusions and I’m thinking about it. Most importantly she understood my problems. I felt supported by her.
    I had to fight to see a neurologist in the begining .I’ve seen two now.One more helpful than the other but both informative in their own ways.
    I was in a dark scary place for a long time but things did improve. I just want to say things can get,better don’t give up hope support can come from outwith .
    I wish all the best to everyone out there struggling

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