Question About Exercise And Heart Rate

[lynnie22]

When I went to Mayo, i was told that the main thing that will help my pots symptoms is lots of exercise, recumbent bike, walking, leg exercises. I have started slowly to walk and use the recumbent regularly, and find that my heart rate has really escalated. I can't take much beta blocker because it lowers my blood pressure too much.

Has this happened to anyone else? My heart rate was 120 standing at its high, now is 145. Sitting has gone up to 110 at times. Does this eventually equalize as your body gets stronger? How long does it take? It's not easy to take.

[gjensen]

Take someone with experience more seriously than myself, and we are all different.

However, when I feel a little better, I tend to "push" it. That is usually followed by a flare in symptoms which includes the higher heart rates. I do not know why, but that seams to be the case.

Possibly working into it a bit more gradually would help. I would ask your doctor what he/she thinks.

What I am doing is still moving forward (regardless of how bad I feel), but learning to be more patient and working into it more slowly. I intend to start the bike in another month. First I am walking my property in the late morning and evening (half mile each), and taking care of my birds. I need this psychologically, so it is priority. I do put leg weights on.

I plan to add getting my fruit trees and bushes trimmed over the next few weekends. I have been pecking at it. Something that I did in two weekends before has been ongoing. Once I have made it that far, I will start the bike. Little by little.

I am trying to avoid the going backwards, but it is hard, because it is up and down anyways. Every time I get carried away, I go backwards.

[lynnie22]

You make a lot of sense -- taking it slow. Thanks for your feedback. My doctor wanted me to work up to 1/2 hour of aerobics and 1/2 hour of weight bearing everyday. Today all I did was 15 min of the bike and I'm exhausted.

What causes the HR to go up so much in general just because we're walking a little more, or is it the decline in my condition? It's in the last year I've seen this steady decline but now the tachycardia is so much worse in general, and especially since I've been trying to move more.

[Chaos]

Hi Lynnie,

One of the benefits of aerobic exercise is that it's supposed to increase your metabolism even when you're not exercising and increasing your HR might be one of the things that occurs as a result of that. In a normal person that's not a bad thing as the increase usually still keeps the HR in a normal range. In your case, the HR increase appears to be happening more than it seems would be a good thing. Of course I'm not your doctor so you should check this out with him, but perhaps the exercise is not being as helpful as one would hope in your case.

I was also told to engage in regular aerobic exercise and did it conscientiously for 2 1/2 years but my symptoms continued to get worse. My HR was getting more unstable with exercise but that was only one of the symptoms I was having. I was walking 4 miles a day at a fast speed but that was the only thing I could do all day and it was resulting in repeated "crashes" where I'd end up in bed for several days, only to start working my way back up again and the cycle would repeat itself.

IF you indeed have ME/CFS and not just POTS, you might not be doing yourself a favor by trying to push aerobic exercise. It has been documented that people with ME/CFS frequently have a low anaerobic threshold and go into anaerobic metabolism at a very low HR- much lower than a "normal" person would do. (Think about a sprinter in the Olympics as an example of someone using anaerobic metabolism. Usually you have a very high HR to achieve this state. In ME/CFS for some reason it has been found that patients are sometimes in an anaerobic state at HRs in the 80's or 90's.) Anaerobic metabolism is very energy IN-efficient and very fatiguing. If you are in an anaerobic state just emptying your dishwasher or doing the laundry, it's no wonder people are exhausted all the time.

The research on exercise and POTS seems to be strong so I'm not discouraging people from trying exercise. I'm a huge fan of exercise. However, in my case, as much as I wanted exercise to cure me, or at least improve my situation, it was making me worse no matter how slowly I built up, or how much I worked up to, or how I tried to switch things around to make it work. That's when I found some of these other articles (links below) and had the testing done which showed that in my case, aerobic exercise is exactly the WRONG thing for me to do.

http://www.cfids.org/archives/2004/su04-workingout.pdf

http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short

Since there is a lot of overlap between ME/CFS and POTS, it may be that some of us won't respond as favorably to exercise as others will. Since all of the POTS studies so far have only done a 1 day exercise test, all the POTS patients tend to look deconditioned (not unlike the ME/CFS patients look on day 1). However, I think it would be really interesting if some of the POTS studies would do a 2 day CPET test and see how many of their POTS patients actually show this dramatic change on day 2, which is unknown to happen in any other disease so far other than ME/CFS.

Even with the 2 day CPET results my POTS specialist and cardiologist continue to push aerobic exercise because that's what they know. My ME/CFS specialist however is adamant that it is not a good thing to be doing based on the research that is coming out in the past couple of years. There is currently research indicating that exercise actually triggers autonomic instability in ME/CFS patients and that in turn triggers immune dysfunction. There was a pilot study demonstrating this and I believe the doc received further funding to do a bigger study to confirm her findings. Hopefully we'll be hearing more about her results in the near future.

[Alison]

I was diagnosed with POTS in December. I do a huge amount of exercise - I play hockey (field hockey for you americans), which means I train for 1 1/2 one evening a week and play a match most Saturdays. I sometimes go running - this Sunday I ran about 5km with friends. I go to a 1 hour weight lifting exercise class once a week and go to yoga. What I notice is that on the days I do the weight lifting and the yoga I have good days, I think they increase my blood flow and my light headedness lifts slightly. On the days that I do hockey and running I feel drained - I don't think they are good for me, I think they are too much for me. I can't bring myself to stop them, I LOVE playing hockey and I enjoy running with friends - we chat as we run. My personal view is that more research needs to be done on the type of exercise that Potsies should do. I think it is likely that non aerobic exercise such as doing weights, yoga and pilates will be found to be best. I've always felt that I was the weakling in my weights class, I don't lift heavy weights. I've just started wearing sports compression tights, and amazingly I was instantly able to increase my weights. I'm also now wearing them for running and hockey and I think they are helping. I actually only restarted playing hockey last autumn after a break of 12 years. I think that it is possible that it is the hockey that has tipped my POTS symptoms into becoming a problem.

I hope this helps - I don't want to put anyone off exercise, we are all different. I think my POTS may be related to too much of the hormones that come from your adrenal glands, I think aerobic exercise increases them.

[TCP]

I have a resting HR of about 95-130bpm. If I exert myself just a little my heart nearly pumps its way out of my chest. My breathing also gets short and laboured. I cannot do any real exercise as much as I want to. I used to walk miles and loved it and now I cannot. I have peripheral and autonomic neuropathy and ME.

I know many people advocate exercise and I have read that the autonomic neuropathy can revert back to normal with steady exercise. I am very wary of this as I know that problems with the heart and breathing can be very risky where exercise is concerned. I have been advised to try lighter forms like simple yoga, swimming, tai chi and qi gong. I would never try anything too heavy. Like you, I have a recumbent bike and am very careful to only use it for a few minutes a day.

[Alison]

My resting heart rate is low - usually about 50. That's interesting that I'm able to tolerate more exercise than others with a higher resting heart rate. Last year my heart rate was sometimes as low as 40. When I queried this with my doctor (I did not have a diagnosis of anything at this time) he said to me that as the heart is a muscle I could consider it good that it was beating so little as I wasn't wearing it out. I think that was a bit of an absurd thing to say.

[lynnie22]

Chaos, your information and articles were very interesting. Thank you for sharing that. Allison, I am amazed that you can do so much exercise. I do envy you....I have never worn compression stockings, one doctor recommended them but I tried them but it felt like I was being strangled, just my experience. I agree that non aerobic exercise is probably better....but believe me, what I do on my recumbent bicycle is hardly aerobic. Three years ago when I was diagnosed with pots by Mayo, I was in much better shape. At that time, I did do lots of weight training type exercise, loved it, better able to walk, much more stable bp and hr. Then, I stopped and coincidentally lost a whole bunch of weight (who knows why?) and everything became flaccid. In the last year I can hardly do anything. I've been trying but I agree that too much is exhausting. Like you, TCP, the recumbent bike really exhausted me this round after fifteen minutes for days.

I'm not sure which way to go, but my doctors all seem to believe in exercise as the cure all. I agree, Chaos, that when I was diagnosed with CFS I wasn't able to exercise without days of exhaustion. I know if I don't start moving though, things are just going to get worse. Maybe easy does it. I haven't tried yoga for quite a while because of torn rotator cuffs and very limited as to doing positions. But I know that yoga is supposed to be helpful.

Does yoga make any of you dizzy though?

Thanks for all your feedback. I think it's so individual, and it's important to pace ourselves.

[Chaos]

As far as "moving", I know my doc hasn't said to be totally sedentary by any means but he counts all the activity you do in a day as part of your "exercise". In fact he had me get a fitbit and set a step limit to try to maintain every day. I'm supposed to try to hit that limit every day but not exceed it. Between the fitbit monitoring step counts and a HR monitor to not exceed anaerobic threshold, the idea is that over time you can increase your activity very slowly in a safe manner without having the extreme peaks and valleys of fatigue and symptom exacerbation that I was having before.

Not trying to give the impression that people should be lying around doing nothing. It's just a different way of approaching exercise and gives you credit for being active throughout the day. I hear you though. I have become very weak and it's really frustrating. It's a vicious circle because when I try to exercise I end up back in bed, but I know if I don't that's bad too. Trying to find a balance point is a daily challenge.

There are chair yoga classes and videos that you might be able to check into. At the studio where I taught (in my past life) we had yoga therapeutics taught by a PT who was really good at making modifications for all types of injuries so you might be able to find something like that near you. You'd probably need to look at a studio rather than a gym for something like that.

[Alison]

Lynnie I would urge you to give the compression stockings a go - I was a bit reluctant at the start, but they have made such a difference. If I don't wear them I feel a lot more lightheaded. I wear some pretty expensive sports ones (they cost about £80), when I first put them on they felt more like a hug than being strangled. I think they are not as tight as the non sports ones. I had no idea but - professional athletes wear them - the increase in cirulation is good for them too. The first time I went to my weights class with them on I found myself thinking - 'I've improved, must be because I've been coming regularly, I can lift heavier weights next time...' then I realised it was the stockings that made it easier.

I've found with yoga that the inversions sometimes makes me nauseous - even downward dog. It doesn't make me dizzy though.

[lynnie22]

Hi, I have a couple of questions. Chaos, what is anaerobic threshold? Sorry for my lack of knowledge, does it mean how fast you can allow your heart to beat? If so, weird thing is, for me standing, just standing seems to be the worst for my HR without any beta blocker. If I do the bicycle for example, if doesn't go up much, not yet anyway, while I'm doing it, just later throughout the rest of the day and the next -- when I'm standing or even sitting up. I know of course if I were to make walking aerobic that would be a whole other matter, and exhausting. I like your idea.

Alison, what kind of compression stockings do you recommend that are more like a hug? I've heard people say that you really need compression stockings that are up to the waist. One of my doctors suggests bike shorts.

Thanks for your feedback.

[Alison]

I have full length compression stockings - they are like leggings. I saw the bike shorts for sale, but I would have thought that potsies would need ones that go down to the ankle as I thought a big problem is the lower legs not pumping the blood back? I'm surprised your doctor suggested the bike shorts? They also sell compression tops, I don't know whether they would help to wear? I found them by googling sports compression tights. I have no idea if the cheaper ones are as good- the ones I have have had quite a bit of research done into the design, and they have had reserach trials published in academic journals.

[Chaos]

Hi Lynnie-

Aerobic vs anaerobic metabolism is how the body utilizes glucose (basically). I may not get all the details exactly right as I'm brain foggy today but I'll try to explain...

Remembering that when you eat, basically everything gets broken down and converted to either glucose, amino acids or fats and then gets processed by the body in some way.

When you are in an aerobic state it means that the body is utilizing what's called the Krebs cycle to process glucose. Basically for every molecule of glucose you get roughly 36 ATP (units of energy) out of it. It is a highly efficient energy process but is relatively slow to go thru. Those 36 units of ATP(energy) are then available to the body to be used as needed. This is the state where most people "live" 90-99% of the time.

When you are in an anaerobic state you move into a different manner of processing glucose (sorry name escapes me right now). It's much faster to produce energy but for every molecule of glucose you only get 3 ATP out of it so it's obviously less energy efficient and can't be sustained for long. Most people only get to this state occasionally and only by exerting themselves maximally- like running a full out sprint or power lifting weights. It's meant for short bursts of maximal effort.

The anaerobic threshold is where you move from being in an aerobic state into metabolizing glucose in an anaerobic state. For most people that happens when they are exerting near maximally and with a high HR. It can be measured using a cardio-pulmonary exercise stress test (CPET) where they measure gas exchange rates along with EKGs, etc.

What is interesting is that the researchers have found that people with ME/CFS sometimes have a very LOW anaerobic threshold- meaning that they move from being aerobic into an anaerobic state with very low HRs and with very little effort being exerted. So for example on the CPETs they have found that some ME/CFS patients are going into anaerobic metabolism with HRs as low as 85.

If a person is going into anaerobic metabolism at a very low threshold like that, it means that they are in a very IN-efficient pattern (metabolically speaking) of utilizing glucose in their body. If you are only getting 3 units of energy (rather than the normal 36) out of every molecule of glucose, it's no wonder these people are tired all the time. It's basically taking more energy to process the glucose than it's giving them in the end.

The confusion between aerobic and anaerobic exercise I think stems from the big "aerobics" push that came out starting in the 80's. It was basically a marketing term but the point was to get your HR up for a sustained period of time when you exercised for cardiovascular health. Since it focuses on getting your HR up it seems confusing to people, but the reality is that it's about being able to get your HR up to a level where you can sustain it for a long period (20-30 minutes) that means it's aerobic exercise, NOT anaerobic.

They don't know WHY this is occurring in ME/CFS. Various theories are out there but none has been proven yet. Much more research needs to be done. Meanwhile, many of the ME/CFS docs are recommending that patients avoid sustained bouts of exercise as they generally seem to feel that the aerobic energy system seems to be "broken" in these patients. They are instead recommending that they do short bouts of exercise only if they can be done without exacerbating symptoms. They stress that the rest is as important as the exercise. They say to count your daily activity as part of your overall exercise, etc. They do NOT recommend lying in bed all day and doing nothing however. They want people up and moving but in a balanced manner.

[Chaos]

Alison- I think one reason that they might recommend bike shorts is that some research has indicated that for some POTS patients the tendency is for the blood to pool in the splancnic vessels rather than in the legs so some patients get better relief with using compression garments in that region than on the legs. Also why "to the waist" compression hose may work best for many people.

Be well!

[Alison]

Chaos I hadn't heard that - that is interesting - I'm not sure I get why - I thought blood pooled in the legs due to gravity?

[Chaos]

Alison-That has been the natural assumption but studies found that for some POTS patients at least, they had much more pooling in the splancnic vessels. I want to say it was some of Julian Stewart's research that showed this, but can't remember for sure. If I remember later, I'll try to find some of them.

Why should our bodies do something expected or logical like respond to gravity? Not like they seem to want to follow any of the other "rules".

[Chaos]

Lynnie- Here's another article which gives a common sense approach to exercise in ME/CFS (and those who have both POTS and ME/CFS). It's long but pretty easy to read I think. The doc specializes in treating this condition so has a lot of experience working with these patients and seeing what works...and doesn't.

http://www.iacfsme.org/Portals/0/pdf/CFSandtheExcerciseConundrum.pdf

[lynnie22]

Thanks a lot Chaos for that info and link. I will read it. The doctor I saw at Mayo never tested for pooling -- is there a test? He just suggested bicycle shorts, not compression stockings. I don't understand it exactly. Is there a test, or a way they tell where the pooling occurs? The only thing I know (well not the only thing, but not too much) is that my blood pressure is very affected by the time of day and my stress level, but not much by my standing up, that it goes down after 9 pm to very low if I take any propanalol after 1 pm, that my heart rate goes way up, especially in the AM when I stand by about 40 or 50 bpm, but is up to 100 sitting without any beta blocker. If I exercise, where this all began, my heart rate is much higher all day and early evening. No idea exactly how this relates to pooling or where I pool, so I hope to discover some of this in the link you gave.

Thanks again!

[Chaos]

As far as I know, the only testing that is being done to show pooling is being done in laboratory settings for research only. I don't know of any being done in clinical settings, in the US anyway, but I may be missing something. For some POTS patients, pooling is obvious by the acrocyanosis that appears in their legs when they stand on a TTT (figure 2 in this article):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

I sometimes wonder if the amount of distension I get in my lower abdomen within minutes of standing up is indicative of pooling in that area. It goes away as soon as I lie down and varies from day to day so don't think it's entirely just weak core muscles.

The idea behind exercise for POTS is that it should decrease pooling and increase stroke volume in the left ventricle of the heart therefore decreasing HR over time. However, if you have ME/CFS there are other factors at play besides just the pooling and that's what the article and links I gave you were trying to address. They don't address the pooling issue.

Happy reading.

[lynnie22]

Thanks Chaos for the links. I read the articles and found them very informative. It sounds like the distension you experience may indeed be related to pooling.

Due to pain in my upper abdomen since the bike (why there?) I have taken a short break from the bike. Plan on going back to exercise soon, but will be more careful about pacing, not that I was doing that much. In the meantime, I am moving around more, not exactly exercise but still....and found that after a certain point of moving about in the evening, my HR seemed to lower some. That's encouraging.

Unfortunately these weird pains in abdomen have not gone away for two weeks, so am having heart and stomach checked. Think though it's some muscle inflammation that got exacerbated.

Take care!

[leydengs]

When I workout I have to adjust my workouts on how I feel. Sometimes I drink salt water or Gatorade while I'm working out which can help. If I have a lot of up down things I can only do those on a good day. Legs are VERY difficult for me and again I can only do those on a good day and I have to take A LOT of breaks. If my body is worn out I have to rest because if I push it then it makes my POTS symptoms worse. I started out unable to walk up my stairs without having to take a break to being able do full workouts but it took time. When I started I'd try walking on the treadmill for 5-10 minutes and then I'd gradually add more time so I agree with one of the other members above, I wouldn't push yourself too much until you are more familiar with your body and how it reacts to different things. Try not to get frustrated. One day you'll be able to do more and the next day you will hardly make it 5 minutes (thanks to POTS) but just try not to get too frustrated. Listen to your body, if my heart rate starts going too high I have to take a break until it slows back down if that doesn't work then I have to stop my workout so I won't pass out.