To feel like ME and Fibromyalgia is killing me

[Confusedallthetime0]

I have been unwell for years following covid and my life is ruined

I can’t work, I can’t meet friends as I’m either exhausted or in so much agony I can’t even walk

I’m 35 and I feel I am merely just existing now after trying absolutely everything from the strongest medication possible, the medial cannabis oil to alternate therapies - everything.

How do people cope with this? 😢

I feel you're pain as I have had fibromyalgia since I was a child and then got ME in my 20s.
I couldn't walk more than round the block/work/do anything.
I still have fibromyalgia to some extent but I have managed to get rid of the ME.
I did it by making my body think it was safe just stop feeling like shite every time I did anything.
I stopped pushing on through and never reach my maximum ability just did slightly less than I knew I could.

I also found I had developed several food and tolerances as it really common because it's autoimmune.
Stopping these was a game changer.

For the fibromyalgia the thing that helps most is (only after I sorted the ME) was exercising regularly, low sugar diet and acupuncture.

I hope you find some relief it can and will get better

I’ve been having acupuncture for a few weeks but now difference at yet

Massage sparks the pain to a whole new level for days after so I can’t even do that to relax for an hour anymore

Im so sorry you’ve been through this - it’s awful 😣

I'm awaiting an ME diagnosis, very long wait in-between telephone appts, it's been years. I don't have much else to offer other than a hand hold and I'm sorry you're going through this. It's rubbish ☹️

It’s all just so hard to cope with

@Confusedallthetime0 , so sorry, both ME and Fibro are very tough and to have both is a serious double whammy.

I have ME. It’s never easy, it’s involved many losses, but you gradually get better at coping with it. I think it takes a VERY long time to get used to these energy- limiting illnesses, if only because everything in our culture encourages us to strive, to be active and to ‘ push through’ - and that’s completely counterproductive with ME and Fibro. Sometimes I hear of people saying you could be better if you tried harder. If only that were true.

Sufferers gradually work out what they most want ( or need) to do, and then get very strategic about how to deploy their limited energy. If in too much pain to walk, people use wheelchairs or scooters. It’s a psychological barrier beforehand but I’ve never known a sufferer say they regretted trying one. A lot of sufferers do crafts of one kind or another. Doesn’t matter what, just something where they can set very small goals and have a sense of achievement.

There are support networks and patients groups for ME and Fibro, and loads more stuff is online since Covid. I recommend them.

Hugs x