Post exertional malaise

[Sallycatherineharris]

My ME seems to involve horrific amounts of pain.

I think via pregablin that I can deal with the nerve pain.

I’m looking for recommendations I can discuss with my GP in the UK for agonising, soul destroying ongoing PEM but the malaise with hideous aching all over (worst flu type) plus the accompanying nausea.

Have any UK GPs prescribed morphine.

I’ve had a hideous crash after cumulative overdoing physio exercises. Now I’ve realised I’ve massively reduced the routine. But as it’s was 6 weeks worth day after day it’s been a particularly bad crash making being alive not feeling a good option. Any feedback and help welcome.

I’m 20 years into this but still kick myself for how daft I can be.

Thank you

 

[Kitty]

I'm so sorry to hear you're having such an awful time of it!

I have weak opioids (tramadol) for pain, but have never tried asking for anything stronger.

As far as we know PEM is related to activity, and the only way to tackle it is to cut out the activity. Ideally until PEM's no longer being triggered at all, or the only PEM you're getting is the result of daily living activities that you can't avoid (eating, toileting, etc).

It's really hard to judge that in the middle of a massive crash, but I've always responded to them with as near total rest as I can achieve, for as long as it takes.

Which is a right pain in the backside, but it's always worked (eventually) and it's the only thing that's worked. I was still in employment when they happened, so my GP's role was to sign me off as unfit. That was the single most helpful thing she could do, and luckily she did—for months on end.

I hope you can find some way forward.

 

[Clio]

I have the exact same PEM presentation (strong pain and nausea), for me traditional painkillers like NSAIDs or paracetamol do nothing for this kind of pain. But dextromethorphan and benzos work very reliably, no idea why or how but I take every win I can get.

 

[Trish]

I’ve had a hideous crash after cumulative overdoing physio exercises. Now I’ve realised I’ve massively reduced the routine. But as it’s was 6 weeks worth day after day it’s been a particularly bad crash making being alive not feeling a good option. Any feedback and help welcome.

I am assuming the exercises were prescribed for something other than ME/CFS. If a physio is prescribing exercises for ME/CFS they should be struck off, and even if it's not for ME/CFS they should know they need to take it exceedingly slowly or find other ways to help you. When I was prescribed exercises after breaking my shoulder, I was left to work out for myself how to adapt the exercises to do them lying down, and cut back on the repetitions, as I couldn't manage more.

I'm really sorry you're in such pain and nausea. I also get pain and nausea as the main features of my PEM. Do be careful with NSAID's like ibuprofen, as they can cause stomach bleeds, as happened to me. I hope your doctor can find something to help you. Ask for nausea meds too.