The video is so eerily reminiscent of my experience. The women at the end says that she doesn't like telling people how she's feeling on any particular day because she doesn't want to disappoint herself or others when they ask how she's doing.:emoji_rolling_eyes: I eventually stopped...
My onset was a sudden viral/vertigo/mild sore throat/ear and grinding/nausea gut sickness. I don't know what virus I had. I went through 5 1/2 years of PVFS and felt that I had eventually recovered from that virus.
For the last 18 years I feel that my immune system has changed and...
@Invisible Woman
I can barely follow a recipe and forget to add ingredients when it's written right in front of me. And you want to add a timer to that?
I'm glad doctors are finally including dysautonomia with ME. It provides other doctors a better understanding on how debilitating ME is without focusing on the 'mysterious, fatigue . . .' lingo.
@Creekside
There is a thread here discussing experiences with black cumin. Dr. Alain Moreau has an interest in thymoquinone, a chemical found in black cumin seeds.
Nigella sativa (also known as black cumin).
to add . . .
Cognitive impairment is a common and disabling non-motor feature in patients with Parkinson's and other neurodegenerative disorders who experience orthostatic hypotension. And there are many different types of OI with very few specialists who can diagnosis them.
Could immediate PEM be the result to those who have a very lowered 'energy envelope'?
I didn't experience PEM during the early years of PVFS, my energy envelope was wider because I hadn't caused any 'injury' (yet) from exercising.
I repeatedly went over my limit and this was when my...
Do you have OI or autonomic issues? Lifting my arms above my head gives me a PEM-like feeling. I need to lie down immediately after for an hour to recover.
For me it doesn't make any difference which muscles I use. I can't do any resistance-type exercise except for light weights from...
Investigators at @NTUSg describe another case of postural tachycardia in a patient with COVID-19. This is the second case after the one described by @StanfordMed researchers.
https://link.springer.com/article/10.1007/s10286-020-00733-x
I am right to assume that PEM is just as severe whether you are mild, moderate or severe?
I don't describe myself as severe, but when I'm in PEM, I want to be put out for 3 days so that I don't have to live through it. It is beyond distressful and quite scary at times.
I don't wear watches during the winter when I go for my walks because the battery freezes and the clock stops working . . . until my legs start feeling weak and I notice that it's been 7:05 pm for the last 40 minutes :bawling: Bring on the PEM.
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