Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 11, 2013.
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I have learned that In my case, PEM is a manifestation of OI. The reason I am sure is because I had the most horrible PEM. I felt so miserable after any exercise or just daily live activity. And the first day I took midodrine ( a Vasocontrictor) the PEM went almost all away (I just cannot go running yet).
I love this article. I love real statistics and facts like the 20% drop in cardiopulmonary function while other illnesses have only a drop of 7%. Really helpful facts to help educated healthies with.
I am thankful for your comment, Inester7. I have been looking at Midodrine to finally throw something at my O.I., and thanks to your post, I am encouraged to bring it up with my doctor at my next appt. I'm also considering Florinef, but that one gets a little more involved with the need to increase fluids, salt intake, and Potassium supplements. I wonder if both Midodrine and Florinef can work well together.
I have Pre-Exertional Malaise...
Excellent article on a timely topic. Thank you, Jody.
Thanks Jody. What frustrates me is that sometimes I can do an activity and don't crash and other times I do. Anyone else notice this?
I think sometimes we can build up a reserve if taking things very easy for a while. Or we can burn through any reserve by constantly pushing just a little bit but not enough to trigger an immediate crash. Then when we over-exert with a reserve still in place, we might get away with it a bit more.
That makes sense. Thanks!!
Sorry forgot to mentioned, I did start florinef first and saw great improvements, went from bed to working in a few days. But the midodrine took me to a much better place. I do take both now.
You're welcome, Valentijn.
Thank you, Barb. That's one of the extra special beauties of PEM, I think. Sometimes we can tell what might be a factor, and yet so often, at least in my case, I can't. Could be a shift in the barometric pressure, or extra noise in the neighbourhood, extra car exhaust in the area ... Why this time and not that time? Sometime we know ... and sometimes we just don't.
i notice this and it frustrates me the most - because there is nothing to go by
my throat flaring up is a good marker for me but it can be too late by then - sometimes its a precursor sometimes its with delayed fatigue.
no-one seems to understand this. its what makes 'pacing' pointless - although staying within that energy ceiling level which keeps on secretly moving is vital to preventing a major relapse.
Thanks Jode for yet another interesting article.
Regardig muscle recovery - the thought usd to be that muscle pain after exercise was due to "lactic acid build up"
Iread that this idea is now discounted and muscle pain - in well people - is due to tiny tears being made in the muscel during the exercise; this causes the pain and as the muscle repair themselves the re- build stronger.
So for PWME - re-building muscle requires extra energy/blood supply? And therefore akes longer?
I know someone at Victoria University here n Australa is inncluding PWME in his exercise physiology research around this topic. LEts hope something comes of it... soon!
Let's hope some answers come from somewhere soon.
Very good article, thanks Jody. For me, it does help to know my experience of PEM is being backed up by observations during various testing. It's good to know it's finally being looked at as, as you said in the article, if they are finding what is happening, treatments may eventually be developed to at least mitigate PEM.
On another note you wrote: "ME/CFS can bring with it abnormalities that are cellular, genetic and systemic". Sorry not being a science person, would it be possible to explain what exactly these three areas of abnormalities are? eg, what would count as a cellular abnormality, a systemic abnormality and genetic abnormality. Many thanks
PEM explained by a mitochondrial specialist
Good question, Anniekim
The research I used didn't specify about the types of abnormalities, and I am not actually a science person either, though I am slowly learning to be. Let me look into this, and I will come back to this thread with some kind of answer for you.
It's amazing to read about these experiences, as a non-ME/CFS person (although I'm only semi-functional and suspect that some of my symptoms have a similar basis). I'm also always comforted by the compassion people show on here for others, the awareness of others who are also living with these experiences. Nightmarish to think of going through these things but being "invisible", even as I also know that nightmare, to some extent.
Very nicely written. I look forward to reading these featured essays for their insight and prose and the incredible nature of what people have to live with, and yet do.
I don't suffer from CFS, I know that I'm lucky. I do get wornout by easy daily chores. When I was younger, exercise like jumping on the trampoline made my hands swell. This article is very impressive, well writen, too.
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