In A lot of pain today — Scope | Disability forum
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In A lot of pain today

Bluey32
Bluey32 Member Posts: 34 Connected
Hi all I'm on a bad day as I call it. My pain today is awful. Been up most of the night tossing & turning. I'm clock watching to see when I can take my next lot of painkillers. ( tramadol & codiene)  my Stomache feels like it's going to explode. I havnt found anybody on here with abdonino phrenic dyssynergia. It feels like I'm all.alone with my condition ? & nobody even my doctor knows what to do. 

Comments

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Good morning @Bluey32 and I'm so sorry you're in so much pain at the moment, I'm not surprised you struggled to sleep. I know it can be lonely when you feel like no one can relate to what you are going through and I really hope the community can help to reduce this. We may not have the same condition but we are like-minded who get what it's like to have a disability and this common understanding can allow us to support each other regardless of a differing diagnoses. Please do reach out if you need support and we will be here. If you'd like to try and take your mind off the pain (I know that can be really difficult as I too have chronic pain) then you may find some of the discussions in the coffee lounge interesting :)  

    I hope your pain starts to ease soon!
    Scope

  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    Dear @Bluey32

    There's nothing like pain for keeping you awake at night... I hope that it settles and you get some sleep soon.  

    Two things spring to mind the first is whether you have ever tried mindfulness for pain?  I thought mindfulness was a load of rubbish when I first heard about it but I'm a convert.  This is a really great book if you are curious: Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing Paperback by Vidyamala Burch and Dr Danny Penman, you can find it on Amazon, the kindle version is only £3.99 or you can find it on Audible too if you prefer audio books.  The first part of the book explains about pain and it's really interesting - even if you are experienced in experiencing pain!

    I don't know if your condition is rare but I know it can feel really lonely if you don't have contact with others with the same thing.  I have a very rare disability and the first person I met with the same condition as me was my son, when he was born - I was 34! 

    I have however discovered a Facebook group of people with the same condition and it has been great - we can relate to what each other is saying, we can offer advice, say what has worked for us and what hasn't etc, celebrate with each other, console each other etc.  If you are on Facebook it might be worth a look or if there is an organisation for your condition they might have a forum/message board like this.  I really hope that you might find such a group for yourself as I've found it invaluable...

    Best wishes.

    Emma

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