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Any UK based Peripheral Neuropathy sufferers out there?

Posted , 39 users are following.

BigG101
BigG101

I'm slowly getting worse and worse. My pain is worse than it has ever been. My weakness is worse than ever. I've exhausted all treatments and don't know what to do next. Other than waiting to see the Neurologist in the hope of getting some miracle drug he knows about that know one else does, I have no idea if I need to just get used to it because this is how every day is now going to be forever. I've taken no time off work, yet I'm suffering all day and fear I'm either going to lose my job or work myself into a grave. I'm so down and just feel sick of the pain and sick of feeling a fraction of the person I was 3 years ago.

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  • Siobhan240
    Siobhan240 BigG101

    Posted

    I typed and deleted a reply a lot here...it's been hard to put my thoughts into words.

    I'm 33 years old and I've been in pain for, I wanna say, 7 years. I can't work anymore because I can no longer walk without aid and literally can't leave the house without my wheelchair.

    I'm a young woman who used to have an amazing career but I had to shut my business down 4 years ago when things came to a head. I've tried just about everything - RA medication like Methotrexate and Sulfasalazine, physiotherapy, steroid injections, multiple different anti-depressants for pain relief, you name it. Right now I'm on like 13 tablets a day which includes Pregabalin. It's thankfully helped me but only in a way that means I no longer scream in pain which actually is a big win. I'm still in a s**t tonne of daily pain. It's hard to live with, it really is.

    However, one thing that's helped me deal with it is therapy. Seriously, I know that when someone says "therapy" or "counseling"some of us do an eye roll, I did LOL but speaking to someone who isn't family has helped me TONNES to battle my depression. I'm not over my depression, it's never as simple as that ... we all know that, but OMG it really helps to equip you to handle those hard days where you're in a lot of pain and can't deal with life.

    I can't be fixed physically, my condition is too far gone at this point, but my life isn't over and neither is yours. Take each day slowly, talk to your employer, work with them and occupational therapy so they can't fire you. Tell your doc or GP EVERYTHING that you suffer with so it's documented. It will help so much incase you need evidence for the future (you never know! I had to deal with the DWP and they're a pain in the arse lol). And lastly, talk to your friends and family - don't shut them out. It can be embarrassing at times, I know, but they love you and will want to help. Let them.

    Don't lose hope! My story is a crappy one but I'm living life, just differently 😃 Feel free to reply if you need to chat!

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