Myositis UK


Tired of feeling like I am carrying extra body. The heaviness and pain is awful

4 Replies

Hello Lisachet, fortunately at the moment I have little pain but you are on the nail when you talk about the extra weight.. Until we get some kind of medical breakthrough just got to keep on going. Have a good day, Wighton


hi Lisa I know how you feel, yes the pain can be a nightmare and feeling tired all the time does not help, just remember you are not alone


Hi Lisachet,

I'm so very sorry to hear this, and you're absolutely right.

I don't know what sort of myositis you have, or how long you've been diagnosed (mine is DM, 5 years diagnosed), but if you're in pain, I'd recommend you ask your hospital for painkillers. I know that sounds obvious, and is much easier said than done when perhaps you can't even get out of bed to brush your teeth (I've been there), but in my experience, you won't get adequate pain relief unless you really insist on it. It took me 2 years to get round to asking, which sounds ridiculous, but it was genuinely the best I could do with everything else to cope with. I wish I'd asked much sooner.

Eventually I was prescribed co-codamol, and it took the edge off the pain enough to let me sleep (although it can be addictive, so I used with caution). But there are other options available, which I talked through with the prescribing registrar, so they should be able to find something to suit you.

Wishing you all the best.


Thank you all so much.It helps we are not alone or think I am going crazy

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