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...
I also get the tingling and lightheadedness when I raise my arms. As Trish says, makes changing lightbulbs very difficult, and even hanging up...
It’s interesting, though, the chronic fatiguability thing. I, obviously, as a severe ME sufferer, have this too, but my eldest daughter, who...
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...
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...
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 -...
Well, in my unscientific and totally subjective opinion of this “paper” (which is amazingly similar to the apparent level of understanding of ME...
Agreed. My daughter has had two craniotomies for her brain tumours (yes, plural, she never does anything by halves) - the first time, she was...
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...
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...
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...
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...
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...
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...
My initial symptoms were awful - months of waking every two hours, terrible hot flushes, exhaustion, even achier joints than normal, I felt...
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