Talk to me about ME

[pennyhasdropped]

Hello, just looking for some advice on this. H has said his daughter has been told by the GP she has ME.. she's 21. Looking online this seems to throw a whole host of symptoms mainly based around fatigue.. anyone have experience on this?

I have just been diagnosed with ME and fibromyalgia, so although I've got no advice I'd be interested to hear others experiences of it. I've had to give up my much loved job, and I have days where I have to spend most of the day in bed. The rheumatologist I saw was extremely unhelpful and basically said there's not much they can do for me. I said I need to go back to work part time at the least, but preferably full time and he said 'that's unrealistic'. I'm feeling a bit lost now, no idea how we'll cope financially and no idea how long I'm expected to put up with being exhausted by the smallest of activities.

I'm struggling enough with the diagnosis at 33, so I can't imagine how it must feel being 21, in the midst of what should be the best time of your life, and having to struggle every day.

I have ME although I'm 90% better and haven't had a major relapse for 7 years.

I had all sorts of random symptoms. The main one was fatigue though. It's totally different to tiredness though -it's hard to put into words but it was like having having lead weight in my legs and arms and I just couldn't do anything without spending the next few days in bed. I was fortunate to have a fantastic OT who helped me learn to pace myself so I could very gradually increase my activity levels.

I developed ME at 40, from being an active walker and cyclist I now struggle walking to the local shops or standing for more than 10 minutes.
Fatigue is different from tiredness, like cider is different from apple juice.
I find Post Exertional Malaise annoying, as I keep overdoing things then crashing.
The brain fog is irritating, as I used to be fiercely intelligent and now when fatigued I can't even follow a simple TV plot.

I am convinced I have M.E. I have been suffering from extreme fatigue for 3/4 years. I was referred to a rheumatologist 3 years ago and they did a load of tests and found a had a really low vit d deficiency of 17. I was thrilled cos thought it could be easily sorted but despite getting my levels almost back to normal in still not right. I have very little stamina, feel fluey, dizziness, sleep problems, brain fog, post exercise malaise, muscle weakness etc... sometimes I feel ok a few weeks then have these massive crashes and the time between these crashes is getting less and less. Trying to get the doc to take me serious has been really difficult but they have recently referred me back to the rheumatologist I have arthritis in my knees and am I think it's in my feet as I have a lot of pain and I believe rheumatoid arthritis can cause fatigue so that's a possibility but I'm absolutely convinced it's M.E. I think I'm just going to have to keep pushing.

I have ME. It’s a difficult illness, not least because many doctors are still so ignorant of it.

The single most important thing you can do to get better is to rest, rest and more rest. Aim to always stop whatever you’re doing BEFORE you get tired. Bear in mind that you might not realise that you did too much until 24-48 hours afterwards (that’s a classic feature of ME). Many people with ME were previously very fit and active and find it really hard to let go of the idea that exercise is good for you, but that’s what you have to try and do. If you do too much you WILL get worse, and that deterioration could last for weeks, months or even years. The people with the best prognosis are the ones who rest properly from the start.

Many uk doctors still think it’s a psychosomatic illness. However there’s a ton of research now going on in the US by some extremely able scientists finding a whole load of biochemical abnormalities. Look up the Open Medicine Foundation and also Ron Davies. That’s where treatments are most likely to come from, but they’re not there yet.