Thanks everyone. I really want to be pro-active regarding my PEM and am determined to be more diligent with pacing. For myself, I've tried just going by symptom on-set but its always too late. I'm hoping a GOOD heart rate monitor will help me stay below my AT(although if I'm honest, the tough part will be heeding the warning alarm).
@Valentijn @SOC @alex3619 What kind/ brand of heart monitors do you use?
@MeSci - you said "when the monitor gets in the way and keeps being activated by mistake" Do all monitors get activated by mistake...I'd like one I could rely on.
I've been slipping my oximeter on my finger lately to measure my pulse (shows it as a continuum vs the blood pressure cuff reading is static) and its amazing how a few moments ago, although I felt not too bad, my pulse showed 97 when standing to get my food from the microwave and it continued to climb while I stood at the counter for a moment. By the time I sat down for a moment, I felt crappy... light headed and weak/nauseous although the heart rate had come back down.
Therefore, the oximeter showed I had gone over my estimated AT whereas if I hadn't known my heart rate just prior to the PEM, I'd just think I'm having a 'bad' CFS/ME morning instead of a result of 'over doing it'. So, as mentioned already on this thread, we may think we're doing ok but its very possible we've far exceeded our AT...for me anyway.
But that raises the question... is PEM
ALWAYS due to exceeding our individual AT? ie..maybe my POTS has returned since for me, the symptoms of PEM and POTS (and even my low blood pressure) are basically all very similar. Do any of you NOT have a POTS dx yet still are challenged with PEM? What's what??
I'm a 57 yrs old female. If I'm understanding the chart correctly, my AT would be about 85 @ 50%, correct? But maybe I should be calculating at 40%? Or, maybe I shouldn't guess at my AT and instead get the actual testing done?
I think I've read there are only a few labs that test for AT. ( CPET or VO2max ?)
@Dr.Patient Where did you get your testing done?
@SOC I think you had yours done @ INIM clinic in Florida but they are not accepting new patients. Regardless, I really I am not really looking at this time for any other CFS/ME testing,
just the AT testing. My hope is that working on the PEM issue alone (my most problematic issue), will allow me to achieve a lifestyle near that of pre-illness. I understand that's a lot to hope for, but that is my hope.
I live in Canada and at one point
@Gamboa mentioned that somewhere in Ottawa, Ontario there is a place that might be considering doing AT testing? She had her testing done in Ithica, NY (at a hospital?) and I don't think other CFS testing was needed to be done there in order to have them do the testing....not sure about that. Does anyone know about the Ottawa or Ithica possibilities?
On this same topic, what are any of your thoughts on the AT testing when considering it's a very real possibility that a long-term crash may follow.
SOC- regarding only PEM symptoms, are you saying that taking high doses of CoQ10 was your biggest aid? Do you feel if you cut back on the dose of CoQ10, you would be affected with PEM as your AT would decrease? What especially did the Valcyte help you with?
I realize I'm asking lots of questions regarding AT and PEM! Thanks so much for the time you people are taking to inform me of these topics!
Edit...Oh Wow, I'm sorry. I just re-read my message after posting and saw how huge it is! Take your time with it as I don't want anyone getting PEM while they take an hour to read through it and then for the time it takes to answer back!! Thanks!!