Exercise

[Sushi]

A...

What is your "protocol" when heart rate gets past your target? Do you stop completely or wait until it's back down and start back up?

I am worried that as I get older this will be more difficult as target rate is going to lower.

Thank you all.

Personally, when my heart rate gets too high (I have not had exercise testing, I am going by experience of what gives me PEM) I stop and rest until my HR goes considerably down.

Sushi

 

[Gavman]

soulfeast, i think walking can be more tiresome when the body is out of balance. Balancing exercises and stretching out the hip flexors and hamstrings would be my primary focus. Also quads, adductor/abductor (inside outside legs). It wont take away the fatigue but it should lessen the burden the body takes.

 

[Little Bluestem]

Before I got ME, I walked a lot and had a fast long-strided walk. When I had to slow down, I maintained the long stride length because I thought I might help maintain hip flexibility. I'm sure I looked strange.

 

[Rand56]

Look up threads on this forum that mention Pacific Labs and you will get a lot more information about this - it has been extensively discussed. In essence aerobic exercise is bad because once we shift to aerobic metabolism we are doing harm. Only mild patients who are tending toward recovery can handle much in the way of aerobic exercise, and they need to be careful. As a rule of thumb patients are given a target heart rate, and unlike the general population we are not told to stay over this rate, but to stay under it. Sometimes that target heart rate is very low too.

hi Alex

As far as my own experience, I can attest to what you say about aerobic exercise is bad. I know my time limits and intensity limits doing cardio. My PEM is not nearly as bad just lifting weights.

 

[Seven7]

Dr told me to use (220-age)*60% as target. I got test Vo2 and my number was 115bpm (before that I used 109bpm) so by using formula I was safe.

Now here was my problem. Standing up to exercise was already 112 or 115. In the morning getting out of bed was 115 already. So observation of your HR constantly is very important for u to get a good routine that works for u.

1) My HR was much higher in the mornings so I had to change to exercise at night.
2) To this date I cannot exercise standing because I loose the range HR just by the fact of being vertical (I have POTs). So figure what gets your HR going and modify those exercises so U don't have to get PEM.
Example: when I lift arms I get very high HR (brushing hair, teeth...) I wanted to do the 3 pounders arms exercise to increase my tolerance to lifting arms, instead of standing, I kneel to do them. I seem to keep lower HR that way.
3) My HR goes up 25% when I eat, so I avoid eating close to workout.


Now I have a question of my own. By nature the HR is suppose to be lower at night (mine goes 10bpm). As the day goes by, does my target 115 get lower as well???

7

 

[xks201]

Considering CFS is a disease in my opinion (based on stool cultures seen here, d-lactate urine counts, and irrefutable scientific literature showing that every CFS patient has higher levels of lactic acid than normal (especially d-lactate)) of excessive amounts of lactic acid producing bacteria in the gut outnumbering the good lactic acid utilizing bacteria such as e.coli, exercise will just make things worse for the average ill CFS patient because it will generate more lactic acid. You would be better off simply avoiding carbohydrates for a period and raising the PH of the gut instead.

 

[xrunner]

What is your "protocol" when heart rate gets past your target? Do you stop completely or wait until it's back down and start back up?

I don't focus on my HR at all. From a conditioning point of view I don;t think it's very helpful.
Perhaps if you have a heart defect or a specific heart condition it may be advisable to monitor your HR (I don;t know) Other aspects are more helpful to get the most out of exercise
- anaerobic
- build muscle fibres, more mitochondria, more strength, stamina
- exercise when testosterone levels tend to be higher e.g. 4-5pm
- focus on anabolic vs catabolic states

Regarding long vs short strides, short strides are less taxing on the cardiovascular system. Long distance runners (other sports too now) try and have shorter / higher cadence for that purpose.

 

[SOC]

FWIW, here's my exercise prescription. It's where I'm starting and will change based on how my HR behaves with this.
Exercises from this page: http://www.mstrust.org.uk/information/exercises/index_exercises.jsp
Laying Down Exercises 1-4, 6-10 reps each (no more than 1 min per exercise).
One minute complete rest between exercises.
Total exercise time: 8 min.
Frequency: 3x per week.
My "eqilibrium" HR on first waking is between 84 and 88 bpm. If my first morning HR is 90 or above, I cut back and rest until it gets under 90 again.
I'm supposed to avoid any activity above my AT (where anaerobic glycolysis predominates).

As I understand it, my aerobic metabolism is "broken" somehow, so we're trying to train my lower range anaerobic energy system (ATP-CP) to compensate to some degree.

Some info about aerobic and anaerobic exercise, for those interested. From http://en.wikipedia.org/wiki/Anaerobic_exercise

There are two types of anaerobic energy systems: 1) the high energy phosphates, ATP adenosine triphosphate and CP creatine phosphate and, 2) anaerobic glycolysis. The high energy phosphates are stored in very limited quantities within muscle cells. Anaerobic glycolysis exclusively uses glucose (and glycogen) as a fuel in the absence of oxygen or more specifically, when ATP is needed at rates that exceed those provided by aerobic metabolism; the consequence of rapid glucose breakdown is the formation of lactic acid(more appropriately, lactate at biological pH levels). Physical activities that last up to about thirty seconds rely primarily on the former, ATP-PC phosphagen, system. Beyond this time both aerobic and anaerobic glycolytic metabolic systems begin to predominate.

Here's an interesting chart, especially if you know your AT and are trying to explain to people how different your body's ability to exercise is from a healthy person's. From the same Wikipedia article http://en.wikipedia.org/wiki/Anaerobic_exercise

If you monitor your heart rate for various activities and compare it to what a healthy person your age is managing at the same HR, it could be very enlightening. For example, most trainers will suggest you exercise at 60% of your age-estimated maximum heart rate. For me, that would be about 100bpm. I'm over 100bpm sitting upright.

If I use my measured AT (125) as opposed to my age-estimated AT (134), then by healthy standards I should exercise like a 65yo. Target exercise HR should be 93bpm. Since I'm over 100bpm sitting upright, my "target" exercise range occurs when I'm laying down but moving a bit -- rolling over, moving my arms, etc. So obviously the exercise standards used for healthy people are completely wrong for some, and probably many of us.

 

[SOC]

I don't focus on my HR at all. From a conditioning point of view I don;t think it's very helpful.
Perhaps if you have a heart defect or a specific heart condition it may be advisable to monitor your HR (I don;t know) Other aspects are more helpful to get the most out of exercise
- I
- build muscle fibres, more mitochondria, more strength, stamina
- exercise when testosterone levels tend to be higher e.g. 4-5pm
- focus on anabolic vs catabolic states

Regarding long vs short strides, short strides are less taxing on the cardiovascular system. Long distance runners (other sports too now) try and have shorter / higher cadence for that purpose.

xrunner: I think you are missing the point that nearly all PWME who have been tested show distinct abnormalities in response to exercise. Most of us have an abnormally low anaerobic threshold (AT) -- the point where your body is requiring more energy than your aerobic energy system can produce. Above that lactic acid begins to build up in muscles and then in the blood. For a healthy person, exercise above the AT is considered hardcore exercise -- exercise beyond cardio training levels, or 80-90% of maximum HR.

Some (many?) of us get to our AT just by walking 100ft, or climbing a half-flight of stairs. We have to watch our HR continuously so that we are not constantly exceeding our AT.

Before I had exercise testing and started wearing a HR monitor, virtually everything I did during a day exceeded my AT. Imagine if a healthy person worked out at hardcore (80-90% of maximum HR) for 15 hours a day, every day. Think about what that would do to their body. That's what I was doing before I got tested and started monitoring my HR.

 

[SOC]

Now I have a question of my own. By nature the HR is suppose to be lower at night (mine goes 10bpm). As the day goes by, does my target 115 get lower as well???

Do you measure your HR as soon as you wake up, before you move around or get out of bed? That should be your lowest resting HR, I believe.

If you have some forms of OI, standing up after being horizontal for hours is going to make your HR soar and it might stay highish because your body is having trouble adjusting to the change. Perhaps after many hours your body finally starts to adjust to being upright and your HR starts to go down later in the day.

Some ME/CFS specialists suggest taking your time getting up in the morning to allow your body to adjust slowly to the change from horizontal to vertical. That means working your way from lying down, to propped up, to sitting up, to moving around a little and sitting again, to remaining upright over the course of an hour or so.

Did Connie say your AT was 115bpm? Or that you should exercise at 115bpm? I guess I'm not sure what your target number came from.

 

[xrunner]

xrunner:
Some (many?) of us get to our AT just by walking 100ft, or climbing a half-flight of stairs. We have to watch our HR continuously so that we are not constantly exceeding our AT.

I know, for a couple of years I couldn't walk that distance. At the time I found any kind of exercise, no matter how light, counter-productive. I was referring to exercise when the conditioning-reconditioning phase becomes appropriate.
Without that premise I don't think one should exercise at all.

 

[Seven7]

115 is my AT (keep HR under 115 when I exercise).
My HR is always around 10bpm in the evening than my RHR which I do take first thing in the morning before I get out of bed.
example:
This morning was 86bpm before leaving bed.
This evening 6:00pm 71bpm sitting up.
7

 

[xks201]

Aerobic metabolism is broken because there is too much lactic acid being generated in the gut which inhibits the pyruvate/krebs cycle and insulin sensitivity. BINGO

 

[SOC]

I know, for a couple of years I couldn't walk that distance. At the time I found any kind of exercise, no matter how light, counter-productive. I was referring to exercise when the conditioning-reconditioning phase becomes appropriate.
Without that premise I don't think one should exercise at all.

Ah, I see. So when is the conditioning/reconditioning phase appropriate? At 90-100% of pre-illness activity?

 

[SOC]

Aerobic metabolism is broken because there is too much lactic acid being generated in the gut which inhibits the pyruvate/krebs cycle and insulin sensitivity. BINGO

That's an awfully absolute statement on an issue even our best doctors don't know much about. Can you back that up with some evidence?

 

[Sushi]

That's an awfully absolute statement on an issue even our best doctors don't know much about. Can you back that up with some evidence?

What SOC said.

 

[taniaaust1]

I wonder how I'd really know what extent my body is exercising if I went via heart rate due to how badly dysregulated my heart rate is when Im on my feet.

I did more then usual today (washed all my floors.. actually on my feet for a whole hour non stop which is so rare... POTS med doing great) . So I decided to take my BP and heart rate right after this activity while still on feet and just walking.. held arm outwards at heart level to take it) I took it every 20-40 seonds..

reading one immediately on stopping the floor washing sudden systolic ditching it ditched 28/101 (heart rate 100.. no idea how the BP systolic was lower then my dystolic)).
Twenty seconds later BP 66/38 (heart rate 172)
Fourty seconds later BP 123/100 (heart rate 194) (does the body increase the heart rate to pull the pulse up???)
2 min mark after stopping housework.. readings starting to come out more reasonable for me (114/102 with a 120 heart rate).
1 min later thou imy BP took another dive and was 68/51 , Heart rate 106
1 min later 121/117 heart rate 140

At this point thou I already know my BP is very wacked out as it also does this on other peoples monitors when I use them too, I thou this time wondered if monitor had screwed up so I ended up laying down to see (laying fixes my BP usually). 1 min later while laying 125/77 (heart beat 87). I wanted another minute and took it again.. finding it around that other laying reading so monitor is fine.

In my case with the dysregulation so out of control, i wouldnt be able to see how hard my body is working going by the heart rate My heart rate and BP while Im upright and doing things is too screwed up .. it wouldnt even get stable even after 8mins of stopping activity and only walking.

Im going to bring this up again to my new specialist this week (I tried once before but he just goes... you cant trust readings on monitors.. thing is ..it doesnt come out with weird readings when I use it on anyone else. I know everything is wacking out when im on feet).

(right now with sitting its 127/95 heart rate 78)

 

[SOC]

115 is my AT (keep HR under 115 when I exercise).
My HR is always around 10bpm in the evening than my RHR which I do take first thing in the morning before I get out of bed.
example:
This morning was 86bpm before leaving bed.
This evening 6:00pm 71bpm sitting up.
7

Wow. I have enough trouble staying under my AT at 125. Is it hard to stay under 115? 71bpm sitting (in the evening) sounds nice, though.

 

[Seven7]

At first before imunovir+equillibrant it was hard to stay under 115. Just sitting up put me over. But I had discover that Olive leaf extract (OLE) lowers my HR so I was using that before treatment to help me keep it at a decent Number.

Note: I think I am making progress I did weights and my day off was yesterday and I am recovered today (RHR = 77). Will try to do wights again today (3 pounds 5min on 5 min off, 3 sets) and see what happens. I think definitely the trick for me is to do it laying down.

 

[SOC]

At first before imunovir+equillibrant it was hard to stay under 115. Just sitting up put me over. But I had discover that Olive leaf extract (OLE) lowers my HR so I was using that before treatment to help me keep it at a decent Number.

Note: I think I am making progress I did weights and my day off was yesterday and I am recovered today (RHR = 77). Will try to do wights again today (3 pounds 5min on 5 min off, 3 sets) and see what happens. I think definitely the trick for me is to do it laying down.

That's great! Do you think the imunovir+equilibrant are significant parts of the reason you can stay under your AT more easily? I was only prescribed equilibrant and I haven't seen a substantial benefit in HR, but I'm at a very low dose, so that could be a factor. I would love to get my RHR down in the 70's.

I haven't tried OLE in an significant amount. Do you mind telling me how much you take?

Congratulations on your improvements! It's always encouraging to hear these positive stories.