Hi, I have just joined the Patient forum & ive read all your posts

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I'm so sorry to hear you have all been going through the same sort of pain as I have been struggling with. I first experienced this pain following knee surgery when I lived in Chicago 15 years ago. I attended several consultants, even spent a week at the Mayo Clinic in Rochester trying to get a diagnosis & to get answers to what was causing this excruciating pain. Eventually, I was diagnosed with RSD (Reflex Sympathetic Dystrophy) It lasted approximately six years, slowly decreased with medication (Gabapentin, Amitriptilyne, Effexor) & consistent gentle exercise like swimming, walking, Pilates. I had to take a 5 year career break from my job as a teacher. Since then the pain has come back every so often but has been mild and responded quickly to Gabapentin ...... until 2 weeks ago.

I have had a very stressful three months. My little grandson passed away in December & my beloved sister died a month ago. I have come to the conclusion that my neuropathic pain must be related to stress, as it has returned with a vengeance. I now live back in Dublin, so have no access to the doctors I attended in the US.

It helps to read about your experiences & suggestions & would appreciate any further thoughts. Thanks!

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  • Posted

    Hi, Your heart pain must be almost breaking your spirit. I am so very sad for the loss of your family members. In addition the physical pain is most likely testing every bit of resolve you have. Please know I am thinking of you and I am sending every best wish I can think of your way. I live in Florida in USA and  sure wish you had access to the Drs. That helped you so much. Hold on to anything and anyone that can help you deal with all of this. I deal with chronic pain from nerv damage it just never ends and has changed my lifestyle. It helps me o think of my Mother and her Mother and my Dad who are not with me anymore. They bring me strength to keep on fighting. I sure would like to be able to give you a hug in person but will send many across the ocean to you. Sending some flowers your way too! 💐🌹🌷🌺🌼🌻🦋and a little of Florida your way too, just for the fun of it! 🐊🦎🐢🦈🐋🐬🌴🎋🌞🏝🏖?🍊🍋

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    • Posted

      Thank you so much, Peonygirl1 & Mandy for your lovely message. Your kind words mean a lot to me. I hate that you are both suffering chronic pain also, it is so debilitating, isn't it? My pain is a burning, stinging pain in my legs & feet. Strangely, the only relief I get is when I walk, which I do with my little dog for about 40mins each day. The prickly, burning pain is at its worst when I stand in one place, which makes activities like shopping standing chatting to people or normal activities in the house almost impossible. I use a stool on wheels to prepare meals & do other things in the kitchen. I'm 62 years old & until 3 months ago, I thought I had a happy, healthy life ahead. Do we ever know? I'm determined not to let this beat me though!

      How are you affected by nerve pain? Is it in your legs? Is it the same kind of burning pain that I described? I'd love to help with suggestions and would be delighted if you had any thoughts on what might help. We can support each other! Thanks again for your messages. I enjoyed the little taste of sunny Florida! Gen xx 🦋

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    • Posted

      Hi Gen

      My nerve pain is all over but worse in legs and feet. But when I'm

      hot especially my burning feet, itch like crazy. I've recently started to put Peppermint

      oil cooling foot packs on rub peppermint oil foot and leg cream on.

      I've Parkinsonism ,Sensory Polyneuropathy and Autonomic Neuropathy

      My mobility is poor I can't walk in the normal way or speed. Balance issues

      and a whole lot more. This has been going on almost 3 years, I lost my job two

      years ago through illness. I'd worked for 33 years so this hit hard too.

      I'm 52 and a single mum of two boys aged 24 &10 ,my eldest son.

      lives with his girlfriend . My youngest is 10 going on 20 lol.

      It's good to talk on this forum ,because people really understand

      completely what you're going through.

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    • Posted

      there is some facebook pages for neuropthic pain but I don't know if I can name them on this page

       

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  • Posted

    I'm so sorry to hear of the loss of your grandson and sister. I can't

    comprehend what you must be going through.

    But I can understand completely the neuropathic pain. My illness started

    in May 2014,after many years of trauma and stress. I think my body was

    overloaded ,and decided enough is enough.

    However, what followed I could never had predicted, it's been a nightmare.

    But by joining the forums you know that you're speaking to people who

    genuine understand what your going through.

    So welcome to the group and let us help you through this very sad time

    in anyway we can

    Mandy

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