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My OI manifests itself similarly to other people’s, mostly, apart from the blood pressure issue. I have a diagnosis of POTS, carried out through a tilt table test, where I became so ill and physically distressed that they had to stop the test after five minutes. This was a particularly bad...

I also get the tingling and lightheadedness when I raise my arms. As Trish says, makes changing lightbulbs very difficult, and even hanging up things like towels uncomfortable. Even on better days, I can’t hang washing out as it makes me feel faint. I have POTS and OT as well as ME.

It’s interesting, though, the chronic fatiguability thing. I, obviously, as a severe ME sufferer, have this too, but my eldest daughter, who doesn’t have ME, but a TBI, also suffers from it, albeit from a completely different cause. Hers is mostly from mental effort and sensory overload...

Balancing the books is a myth…

I find the same although I take mine with morphine :). I take modified release morphine daily and do have a small top up dose available for bad (worse?) days, but I try not to take it unless I’m in desperate straits. I always take paracetamol first, mostly because it works much faster than the...

I haven’t had a cold in the fifteen years I’ve had ME. I’ve noticed before that when other people in the house get ill, and bear in mind I had three teenage kids when I got sick, all at different schools/colleges so there was a large variety of viruses coming home, I just don’t seem to get...

Me too.

Ditto….

What a difference between the responses from AfME over this and the MEA one over the PROM thing. Very impressed with such a thorough mea culpa - not only a proper apology but concrete steps provided on how they’re going to do better, such a contrast with the patronising gaslighting from the MEA...

Well, in my unscientific and totally subjective opinion of this “paper” (which is amazingly similar to the apparent level of understanding of ME by the author), what a complete, aromatically steaming heap of crap. Edited for punctuation.

Agreed. My daughter has had two craniotomies for her brain tumours (yes, plural, she never does anything by halves) - the first time, she was lucky enough to be put into a private room for her recovery, which helped her enormously as she already had post concussion syndrome and fairly severe...

This is my thinking as well. I have POTS, but my HR goes up a lot on bad days and not very much on better days. My resting HR is between 48 and 52, and on a bad day it will go up to over 100 when I stand up. But what really makes me think that my poor body is actually doing its best to keep me...

Well, my daughter could teach that idiot a thing or two - she’s about as fit and active as she could be and *still* struggles with what is now lifelong PCS. She works at a stable two days a week, and plays hockey on a third. But she can’t do both on the same day and still needs the rest of the...

Yes, this is exactly how I’d describe it too, thank you!

My younger daughter has EDS, POTS and suspected ME and her responses to overexerting herself are *exactly* like mine - immune response, flu-like symptoms, excessive fatigue, aches and pains, brain fog etc. My elder girl doesn’t have any of that at all, she’s just tired. She doesn’t show any...

Yes, exactly. She doesn’t have any of those, she’s just knackered.

It’s not delayed, and she doesn’t have any other symptoms apart from the ones you’d normally expect from someone who had over-exerted themselves either physically or mentally. It’s just that the levels of exertion required to provoke that response are lower than they should be. Her brain gets...

She doesn’t have any sort of immune system response to it, unlike me. She’s just knackered. She doesn’t have ME, she doesn’t have the aches and pains, the immune type responses or any type of delay in her fatigue levels. She’s really not ill, it’s much more that she’s worked really hard at...

My daughter has PCS after a head injury after a bike fall. She’s lived with it for ten years now and will have it for the rest of her life - after two years we were told it would be permanent. We’ve often noted how similar her issues are to mine in every way except PEM - the cognitive effects...

My initial symptoms were awful - months of waking every two hours, terrible hot flushes, exhaustion, even achier joints than normal, I felt terrible, and this is from someone with severe ME. The poor sleep and the constant changing of clothes was absolutely exhausting me to the point of tears...