3 Years and still just as painful

Hello, I just wanted to find some other people with the same issues I've been suffering with for around 3 years now. I suffered with Ramsey Hunts Syndrome and then got shingles in my back a year later. Since then I have suffered with postherpetic neuralgia and I have been on multiple medications and none seem to make it easier. I cannot do daily tasks and I have missed a lot of work.

I am starting to feel quite blue about it all and just want to feel I am not so alone in how I feel. I have the support of my family, friends and partner, but it's hard for anyone to understand how much this can get me down. I feel as if the pain is winning and beating me, I am no longer sleeping well because of the pain and I am waiting for a doctors appointment. What do other people do? How do you cope? How do you carry on?

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  • We do understand! Be nice to yourself and do whatever you can that gives you some enjoyment, whether it's having a cup of tea in peace and quiet or just sitting in front of the telly.

    I am currently off work, not just pain-related, but I am coming to terms with the fact that just keeping going is really hard work and we all need some help sometimes.

    When my pain was really awful and nothing seemed to be helping, I wrote down every medication I'd taken and what the effect had been (usually more side effects than good). I also wrote down what other things I'd tried to ease the pain. I wrote down exactly what it felt like, and things like it interrupting my sleep. I found that presenting this to doctors usually helped, as it's hard to remember what to say when you go to see one, and sometimes the emotions you feel can make it hard to talk. No one ever thought this was silly or a waste of time, and they usually found it interesting and wanted to look at other things that might help.

    I really think you need to include how much this is getting you down - don't just say "I'm a bit down", describe what it feels like, for example, if you're in tears, say so.

    I gather that the sort of pain you have from shingles is especially horrible, and I have been on some of the medications they use for that sort of pain, so I know how crap they can make you feel.

    It won't beat you.

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