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how can I stay in aerobic zone of exercise without knowing when anaerobic is kicking in?

msf

Senior Member
Messages
3,650
How about walking? That's the only exercise I do these days, as it's pretty easy to stop yourself overdoing it, i.e. going into anaerobic respiration. You can slow down to a snail's pace if you feel tired, and if you walk somewhere with lots of buses you can just take one back when you get tired (if you manage to get two bus stops away from your house, that is!). This advice is obviously only valid for those who have moderate ME, not the severe kind. If you have the severe kind, just looking after yourself is probably enough exercise, at least until your condition improves a bit.
 

msf

Senior Member
Messages
3,650
Oh, when your walking it's easy to check your heart rate, you don't even have to buy a heart rate monitor, and your legs will tell you when you start producing lactic acid.
 
Messages
15,786
That absolutely does not work for me. If I wait until I'm breathing heavily, feel faint, empty of energy, or have muscle aches, I am FAR past my AT and have been for some time. Waiting until I have symptoms is a guaranteed way for me to PEM myself continuously. The only way I avoid PEM is by using the HR monitor and religiously staying below my AT.
That was my experience as well. I thought I was handling some activities fairly well, but my heart rate was actually getting up to 120-130 in the process. I think a heart rate monitor is necessary for at least finding general limitations, and how to do things without exceeding them. Though with as variable as heart rate can be from one day to the next, even when doing exactly the same activities, I always use it for my most intensive activities, such as showering and outings.
 
Messages
15,786
As you please! :) Personally I don't want one and I am going by symptoms. works for me.
Yeah, the problem is that it might not be working as well as you think it is. That was my experience anyhow, once I started using a monitor. Symptoms often aren't a good enough indication of when to stop doing something.
 

Mij

Messages
2,353
I learnt not to wait for symptoms since it may be too late for some of us. I lie down for 1/2 an hour or more (depending) throughout the day even when I feel ok. It's easier said than done though! I haven't had PEM for many months and this enforces me to keep doing what I"m doing. I hate PEM.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I have a wrist heartrate monitor and my activities tend to be manual (e.g. gardening) when the monitor gets in the way and keeps being activated by mistake. So I just wear it occasionally, to give me an idea of what I can usually get away with, and how I feel when I am reaching the threshold.

Then the rest of the time I use what I learned while wearing the monitor to try to stay within my limits as much as I can without it.
 

charlie1

Senior Member
Messages
315
Location
Canada
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.

For me, antivirals were the big thing, Valcyte especially. Florinef and verapamil along with 3 L of fluid daily, electrolytes and fluid-loading helped my OI. Supplemental T3 and T4 help with my hypothyroid symptoms. I avoid known allergens and take a Zyrtec twice daily. High dose CoQ10 (1200-1800 mg daily) seems to have raised my PEM threshold
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!! :)
 
Last edited:

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Re my monitor getting activated by mistake, that is partly an issue of my own ineptitude at working the thing, and partly its design, which has a watch-type button sticking out at the join between wrist and hand so that whenever I bend my wrist backwards slightly it risks pressing the button and then I might accidentally re-set something and be unable to work out how to get it back to how I need it. It measures several other things, which I don't need, and I struggle to switch it between different modes. The brand is New Balance, and I bought it second-hand. I usually struggle to get a reading at all, and I don't recommend it. I don't bother with alarms (can't seem to set one anyway!). I just test my heart rate when I feel like it/when it's convenient.

My blood pressure monitor also measures heart rate and is much more reliable but rather bulky.

I don't have a POTS diagnosis and am pretty sure I don't have it - my heart rate and bp don't seem to vary much when I stand up, etc. There was an Australian (I think) study that found a smallish minority of us have it, but some dispute this.

Warning re Co-Q10 - it helps some people but some can't tolerate it - I can't. I think it made me hypoglycaemic.

Re CPET testing, there are several threads on this, and whether it's worth risking probably depends mainly on how badly affected you are. You don't have your activity level in your profile - that might give a useful guide if you could estimate it.
 
Messages
15,786
@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 use an Alpha Mio. It has a motion sensor which corrects for arm movements, and doesn't include them when measuring heart rate. But vibrations from driving on a consistently bumpy road will throw off measurements.
But that raises the question... is PEM ALWAYS due to exceeding our individual AT?
No. Monitoring heart rate is just one way to help avoiding crashes. I also have to pace and pay attention to symptoms (pain, muscle twitches, etc).
I'm a 57 yrs old female. If I'm understanding the chart correctly, my AT would be about 85 @ 50%, correct?
Yours would be approximately (220-57)*.6 = 98. 85 is too low to use as a limit.
 

Kati

Patient in training
Messages
5,497
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!! :)

You are describing POTS when you say that being upright and standing by the counter you observe your heart rate going up.

POTS is treatable- somehow, with beta-blockers, midodrine, florinef and electrolyte drinks (for instance sports drinks) which increase blood volume. POTS is also diagnosable via tilt table test. Prrsonally I am on beta blockers which regulates my heart rate. That means that when I did a 2 days exercise test while on Atenolol, my heart rate didn't go higher than 120 despite me giving everything that I had. And guess what? Yes I did have PEM.

A couple months ago I did another 2 consecutive days exercise test. This time without Atenolol. my max heart rate was 175. And yes I had the same familiar PEM.

Heart rate monitoring is not infaillible. Listen to your body. It whispers to you all the time.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
is PEM ALWAYS due to exceeding our individual AT?
I don't think so. The AT is about exercise induced PEM, and I think its about short term exercise. Prolonged exercise even below your AT could probably still induce PEM. PEM is typically hypothesized to be related to energy deficiency i.e. ATP deficiency. So, in theory, other ways of losing ATP might induce PEM, including some drug therapies or a flu etc.


Do any of you NOT have a POTS dx yet still are challenged with PEM?
Something like half of all ME patients do not have POTS, and yet still have PEM. I have the other OI, neurally mediated hypotension, and have PEM. Not all patients have detectable OI though, yet still have PEM.

I do not use a heart or pulse monitor. I watch my symptoms and that includes symptoms of things that could preceed PEM such as heavy breathing.
 

SOC

Senior Member
Messages
7,849
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?
I used an OMRON with a chest strap in order to get continuous monitoring and an alarm. I found (as you did) that many activities I wouldn't have guessed were significantly increasing my HR were actually problematic for me. I doubt I would have spot-checked my HR at all the right times, so the continuous monitoring was a big help. The alarm feature allowed me to get on with my life without always thinking about and checking my HR. I only had to pay attention when I was approaching my AT. I found that much less stressful than having to be constantly aware.

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.
That was certainly true for me. I thought I was aware and paying attention to symptoms, but once I started HR monitoring, I realized I was frequently (almost constantly) over my AT doing things I thought were okay.

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.
I don't think so. I suspect the only case where that might be true is when a person is misinterpreting exercise intolerance from OI as PEM. In that case, controlling POTS and staying under your AT might eliminate the symptoms the patient is thinking of as PEM.

I can PEM myself from doing too much even if it's all below my AT. I can PEM myself from mental activity. I also get what I consider PEM if I develop an infection.

What HR monitoring does for me is help me avoid the constant cycling that comes from routinely PEMing myself by going over my AT. It stablilizes my life. I know what I can do routinely now; it's no longer a question of every day being different and therefore unpredictable. The other events -- infection, excessive mental activity, too much lower level activity -- are easier to identify, so I know when I'm PEMing myself that way and can predict and accommodate.

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?
That's always a tough question. My preference would be to get the AT testing so that I know what MY body can handle rather than guess according to some rough average of who knows what population. Keep in mind that you can get AT testing without doing the maximal test. You have the tester stop right before or as soon as you get to your AT and chances are very good you'll avoid PEM from the test. If you do the full CPET going all the way to maximal exertion you're a lot more likely to PEM. But if you don't need the maximal data for disability (or whatever), than why go all the way there and risk PEMing yourself?

Almost any hospital with a cardiology unit can do a CPET. Even some high-end gyms with exercise physiologists on staff have the equipment for doing AT testing. You don't need to go to a specialized ME/CFS clinic for it. The risk of going to a non-specialist place is that they won't understand the limits of ME/CFS and may think that their equipment is malfunctioning or that they will push you too hard. However, if you insist that they stop the test at your AT and don't succumb to pressure to push to your maximum, any place that does a CPET should do.

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.
That may be overly optimistic. :hug: In order to stop PEMing yourself, you have to reduce your activity, which will not take you back to your pre-illness lifestyle. It may limit your lifestyle even further. It would likely reduce your symptoms (exhaustion, pain, brain fog, etc) and make your life easier to predict and therefore plan. For example, before I was pacing with a HR monitor, I never knew from one day to the next what I'd be able to do. Now I have a good feel for how much I can work each day so I can plan my tutoring work, and home- and self-care and be confident I can do what I committed myself to do without being non-functional the next day.

Again, if the PEM is actually exercise intolerance from OI, then getting the OI under control might eliminate the "PEM" without significantly reducing your activity. That probably has little to do with staying under your AT and more to do with managing BP and HR.

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.
See above re: AT testing vs CPET testing to maximal exertion

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?
Hmmmm.... well, I could do a fair bit more after Valcyte treatment, but I wouldn't say it decreased my PEM much. After Valcyte I wasn't exhausted all the time, I didn't feel constantly fluish, I had less cognitive dysfunction... really all my symptoms improved but my PEM threshold was still pretty low.

I don't think high dose CoQ10 altered my AT, although I haven't had it tested since I started the high dose. It feels more like I can do more before I reach my AT. Before high dose CoQ10, I couldn't walk 50 yds without going over my AT and PEMing. Now I can walk around a grocery store without going over my AT.

I have cut my CoQ10 dose back to 1200mg from 1800mg when I felt my best, hoping the lower dose would be sufficient under those circumstance. The stuff is SO expensive. However, I don't feel like I can do as much at the 1200 mg dose, although it takes a week or so for that to become clear. I get tired more easily at 1200 mg, so I prefer to stick to the 1800 mg unless everything is going perfectly and I think I can risk the lower dose for a while to save money.

As others have pointed out, high dose CoQ10 is not for everyone. Some people get very jittery on it. It makes others nauseous. My guess is that it may be a simple matter of physiological need. My body needs more CoQ10, so high doses work for me (and my daughter, btw), but if your body already has all the CoQ10 it needs, taking a high dose is likely to upset your system in some way.

I would guess the same applies to dosage. Some people do really well on 200 mg, which does absolutely nothing for me. If I was starting CoQ10, I'd start at 100 mg or so and work up slowly. I went from 200mg to 400mg to 600mg to 1200mg to 1800mg, but a slower progression would probably be smarter for most people. ;)
 
Messages
25
Location
Canada
@SOC and others, thanks for all the information! I was thinking about how much it must cost to take that much CoQ10! I never noticed a difference when taking it, but then I never took more than 300 mg. Can you recommend a brand? How do you take it?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Another couple of thoughts about heart rate.
  • If one is taking a drug that reduces heart rate, should one take this into account when estimating anaerobic threshold? Should the drug effect be controlled for, or the new drug-reduced heart rate just be used as 'normal'?
  • Could one use one's estimated activity level to estimate AT? E.g. perhaps if activity level were 4, or 40% (depending on scale used), it would be 40% of the (220-age) figure, and for activity level 6 or 60% it would be 60% of the (220-age) figure?
This could perhaps explain numerically why people with low activity levels may only be able to, say, sit up in bed to reach/exceed their AT.

Activity levels are discussed in this thread.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
More re my reactions to Co-Q10.

First time (2005): nausea, ataxia, numbness. Dosage not recorded. Took for about 7 weeks.

Second time (2012): dizziness, hunger, difficulty controlling bowels (almost incontinent one day). Dosage 100 mg a day. Had to stop after 1 or 2 days.
 

Mij

Messages
2,353
@SOC and others, thanks for all the information! I was thinking about how much it must cost to take that much CoQ10! I never noticed a difference when taking it, but then I never took more than 300 mg. Can you recommend a brand? How do you take it?

It's possible you may not feel any difference, it depends on where you are at in terms of wellness. For myself, the post exertional effect of CoQ10 is where I feel it is helping. I no longer experience too many symptoms, only immune/viral episodes and autonomic distress which gets worse when my immune system is overloaded with enviro allergies etc.
 

charlie1

Senior Member
Messages
315
Location
Canada
When I first started taking CoQ10, I was becoming very nauseas but wasn't certain it was from that alone. It could have been the KPAX formulas that I started at the same time. Plus I wasn't on my PPI anymore. I stopped taking the Coq10 briefly, and when re-introduced, made sure it wasn't taken the same time as KPAX and had PPI back in my system for days already.
So far I'm fortunate in that the CQ10 is not affecting me negatively. I haven't seen any benefits either though. I'm now at 200 mg and working up slowly.
 

charlie1

Senior Member
Messages
315
Location
Canada
@SOC - I've tried a chest strap type monitor before and it bothered me. Do you know if its actually more accurate than the OMRON strapless?

@Valentijn - can you program your Alpha MIo watch to set off an alarm you when you reach your AT?
 
Messages
15,786
@Valentijn - can you program your Alpha MIo watch to set off an alarm you when you reach your AT?
Yes, it stores the alarm thresholds, so I don't have to reset it. If I want alarms to go off, I just push the right button again, but briefly, and they'll start flashing and beeping when I get too high or too low.
 

charlie1

Senior Member
Messages
315
Location
Canada
So it gives a continuous reading all day like an oximeter would or do you have to tap it to see what your bpm are?