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Had it for 25 years the pain is unbelievable sometimes any comments 


  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    Hi @brian55
    Sorry to hear you've experienced pain for so long - I'm wondering if you've developed any strategies for managing your pain over the years?  
    I've just written an article about pain management for a magazine [I'll post a link once it is published...]. 
    I think it's a really interesting subject and I think part of the issue of successfully managing pain is about understanding how pain works - see book mentioned below.  
    Research has also shown that people fair better if they learn to manage the pain rather than go from professional to professional in search of a 'cure' for it.  
    Finally, it is now realised that long term use of opioids can actually have a little known side effect of hyperalgesia - increased sensitivity to pain; opioids were never intended for long term use and they are ineffective for long term use for most people.  There's an interesting video on the My Live Well With Pain website where a lady with fibro found her pain significantly reduced when she came off opioids...
    You might find these websites interesting: - Vidyamala's book Mindfulness for Health is really good for explaining about how pain works ie how there is an inextricable link between the mind and body.  Psychological pain can be embodied ie felt in the body, this isn't saying the pain isn't real it is just saying the source of the pain isn't organic ie due to cancer or a broken leg for example.
    I hope that is helpful; I know personally that pain can be all consuming and how brilliant it is if you can find ways of managing it.
    Best wishes.

  • WhileIBreathIHope
    WhileIBreathIHope Posts: 216 Connected
    Fibromyalgia, I always thought was as much a mental issue as an actual issue- until I got a dose of my own medicine.

    I believe the trigger can be high stress levels and gut biome, I didn’t believe it when I went to sleep like I had been awake 24 hours and woken up like I had been beaten up.
    I didn’t believe I had Fibromyalgia until I drove to next town had cold sweats, sleep and couldn’t manage to drive home without a sleep.

    On my quest for an answer Epsom salts provided relief along with a high caffeine bean to cup coffee addiction and large dose of opioids and ibuprofen on prescription.

    Everybody wants a cure, I’m from housebound to working self employed.
    Can walk dog on planned route with toilets on route.

    read into it what you will

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Welcome to the community @brian55, sorry to hear you have been living with pain for so long. How are you managing things are the moment?


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