Getting back into exercise (Running)

[M Paine]

Looking for advice or other people's experience in this area.

I've started running again, as my health is improving. I thought that I would be able to start out jogging and keep my heart rate down, however as is often the case I overdid things and my heart rate shot up post exercise. Almost a week later and my lymph nodes are no longer swollen and my resting heart rate is normal.

The treadmill I use has a heart rate monitor, but it's basically useless. Measuring heart rate manually, I definitely got above 80% of anaerobic threshold.

Has anyone else managed to get into careful exercise? I get really jealous when I see runners out and about, I loved running, and I know that I should be careful, but it's like a drug. I haven't had a drop of alcohol for months, but if someone offered me a PEM free night of drinking or running, I'd take the run.

 

[minkeygirl]

Are you nuts? Lol If it took you a week to recover your body is telling you something. Listen.

Reaching for the remote is plenty of exercise for me. Ha

 

[SOC]

Has anyone else managed to get into careful exercise?

Yes, but not running. Running is likely to be one of the worst ways to exercise for PWME, sadly.

I'm going with the general advice of exercise physiologists who study ME/CFS. If I understand them correctly, staying below your own measured AT (not the age-calculated AT for healthy people) is critical. Low level strength training and stretching seem to be the way to go. That works the low level anaerobic metabolism (ATP/CP) not the aerobic (aerobic glycolysis) or high level anerobic (anaerobic glycolysis) metabolism, which seem to be broken in PWME.

Based on my exercise tests (submaximal CPET), my exercise phys advised exercise lying down, less than 7 reps per exercise, less than 7 minutes at a time with about 10 mins of rest (lying flat) between, with no more than 30 minutes in one session.

I found this boring and mentally difficult to maintain. I managed to find a fitness studio that allows me to rotate through their machines 30 secs at a time with 30-60 sec rest breaks between (more sometimes if I feel I need it). I work 15-20 minutes, then do another 5-10 minutes of stretching. I can do this sitting (not standing) now that my OI is under control. I cannot use machines that use leg muscles without getting PEM, so I'm restricted to machines that exercise core muscles, arms, shoulders, and back. I try a couple of 30 sec experiments with the leg machines every couple of months, but so far have PEMed myself every time. It's not worth it.

This exercise is NOT affecting my ME symptoms or particularly affecting my functionality. In fact, I have to give up some evening activities in order to have the energy to do this small amount of exercise. I did not exercise for the sake of exercise until I was able to take care of my activities of daily living and do a bit of work (at home, self-employed) to support myself. It was more important to me to use the energy I had for critical life activities than to waste it exercising for the sake of exercise.

The benefit I see in the exercise is that I'm a little stronger, so I can lift groceries a bit more easily for example. My movement feels more fluid -- I don't feel quite so much of an arthritic old woman getting out of a chair. I get a little bit of social contact in the fitness studio that I wouldn't get otherwise. And maybe there's a little bit of endorphin benefit... or maybe it's just an emotional boost to a former athlete to be spending even a little time on the machines.

IMO, the Workwell Institute has done the most, and best, work regarding ME and exercise. Reading their stuff is probably the best way to sort out the best way to exercise for you.

 

[meandthecat]

I exercise to my limit, if I run it is for less than a minute. I stop before my heart rate exceeds 120. It works for me.
PEM scares me, like playing chicken with a train.

 

[Esther12]

I think everyone's different, and you're probably best trying to find your own way.

If you have a treadmill at home that should make it easier to do very little bits when you feel up to it. It's possible that you won't be able to scratch this itch without your health having improve first.

 

[Sea]

I'd recommend getting a decent heart rate monitor and just observing for a while how your heart rate responds to your everyday activities. Then you could experiment carefully with exercise and find a level that you can do safely.
Nancy Klimas recommends knowing what your usual HR is when you first wake up before getting up. Her advice is that you can then use this knowledge to determine whether you've overdone it the day before, as HR would be higher than your normal.

There are Facebook groups specifically focusing on safe exercise in ME/CFS and monitoring with a HR monitor. There's also a website, google cfsknowledge, that you can sign up to that have videos from Nancy Klimas and an exercise discussion group.

I'd also recommend being very careful to not push yourself into PEM as the patient evidence certainly points to that as a huge factor in causing relapses. Wishing you all the best and happy for you that your health is improving to the point where you can consider exercise.

 

[ScottTriGuy]

@M Paine

I have twice recovered to get back to triathlon training and racing and podiums (total front door brag!).

I started by increasing my walking to an hour every day. After a few weeks of that, I would add 15 seconds of jogging every 5 minutes of the 60 min walk, for 3 days.

If that went well, I'd increase to 30 seconds every 5 mins for 3 days, then 45 seconds...

Listening to your body is crucial. Only you know.

 

[M Paine]

Fair comments, I think that @Esther12 sums CFS up really well, we're all different and have different limits. The best we can do is share our own experience.

I probably should have mentioned that I have successfully run on the treadmill without subsequent PEM, it was just this last time which I exceeded my limits. I also do daily excercise in various forms, mostly walking and Yoga (Yin Yoga).

I do monitor my heartrate daily, and I only exercise when it's been in normal range for a couple of days at the least. I've been on the lookout for a decent monitor that I can wear at the gym, as the reason I went over last time was that I was checking manually ever 5 minutes... and it got away from me. I also practice laying down after exercise.

Thanks for sharing your stories, keep em coming.

@Sea, do you have links to any of those groups?

 

[M Paine]

Thanks for your positive comments @ScottTriGuy, I was training for a half marathon when I had my latest crash. Prior to that, I didn't know what was wrong with me and I had kept pushing myself through PEM. I never ran that half marathon, but I'm hopeful that I'll get back to that level again (just a lot more cautiously and easy going to get there!). Your story is inspiring.

 

[ScottTriGuy]

I'm hoping to make another comeback - today I walked 45 minutes!!!

 

[SOC]

Fair comments, I think that @Esther12 sums CFS up really well, we're all different and have different limits. The best we can do is share our own experience.

I probably should have mentioned that I have successfully run on the treadmill without subsequent PEM, it was just this last time which I exceeded my limits. I also do daily excercise in various forms, mostly walking and Yoga (Yin Yoga).

I do monitor my heartrate daily, and I only exercise when it's been in normal range for a couple of days at the least. I've been on the lookout for a decent monitor that I can wear at the gym, as the reason I went over last time was that I was checking manually ever 5 minutes... and it got away from me. I also practice laying down after exercise.

Thanks for sharing your stories, keep em coming.

@Sea, do you have links to any of those groups?

It's certainly true that different levels of disability are going to have... er... different levels of disability. Mild patients will be able to do much more before PEM hits than severe patients who can PEM from walking across a room.

Since you are able to do a lot of exercise for a PWME (remember an ME diagnosis requires a 50% reduction in activity level -- not that I necessarily agree with that), the trick is finding where the activity becomes too much. That's much harder to judge when you can do a fair amount of exercise. I suggest you get a CPET and find out what your particular AT is. That will give you a much better gauge for determining when you are approaching too much exercise. The AT of PWME is much lower than that of the healthy population, so using any standard AT calculation will having you doing too much for your particular condition.

You might also want to make sure that you aren't dealing with some form of OI on top of ME. That's not going to cause the swollen lymph nodes and such, but might affect HR issues.

FWIW, my daughter loves her Mio Alpha strapless HR monitor. I find that without an alarm on my HR monitor, I forget to pay attention and go over my AT, which will knock me flat every time. I set the alarm at 15-20 BPM below my AT and stop and lie down as soon as the alarm goes off. My HR continues to rise for a bit after I stop, which is why setting it lower than my AT is necessary.

I, for one, don't advocate the "Do what feels right" exercise strategy. Ignoring measurable data that can help you judge how your body is handling the activity is folly, imo. Yes, we all want to do more, but it's fantasyland to pretend the information doesn't exist so that we can keep going and fool ourselves that we're not overdoing.

 

[Sea]

ME/CFS - Pacing with a Heart Rate Monitor
https://www.facebook.com/groups/ME.CFS.HRM/?ref=browser

This one is probably less relevant for you if you don't have significant OI that affects your ability to exercise upright
Exercise Group for Potsies
https://www.facebook.com/groups/potsies4exercise/?ref=browser

CFS Knowledge center
http://www.cfsknowledgecenter.com

 

[panckage]

Has anyone else managed to get into careful exercise?

Yes, although I'm not always able to do it. As everyone mentioned a heart monitor is great tool to see one is not overdoing it. I do best with 'minimal energy' exercises:
1) Strength training with a suspension trainer or gymnastic rings. I use these mostly with Isometric type exercises to minimize energy expenditure. It is also safe for doing when dizzy
2) Exercise bike (while playing video games) - this uses much less energy than running and a HR monitor makes it pretty easy not overdo it

 

[M Paine]

Since you are able to do a lot of exercise for a PWME (remember an ME diagnosis requires a 50% reduction in activity level)

I'm not sure exactly why you raised this point, but it's probably worth clarifying the International Consensus Criteria, it states the following.

"Operational Notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level), moderate (mostly housebound), severe (mostly bedridden), or very severe (totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient’s recovery time from reading for 1⁄2 hour, it will take much longer to recover from grocery shopping for 1⁄2 hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately. Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person."

I think this is important, that for some of us who have been quite fit leading up to illness, a 50% reduction in activity doesn't require that a person is reduced to a sedentary lifestyle. In my own case, I was running an average of 20 - 30km a week at best, and housebound at worst. It really just highlights the point that everyone is different, even if I could still run 10-15km (I wish!), I would still meet the criteria.

The Doctor who diagnosed me was on the panel, so I'm fairly confident that the diagnosis is correct, in case you were meaning to caution at that possibility.

I'm a bit weary of getting CPET done, do they take you all the way to V02 max?

In terms of OI, I find that I have had times during particularly bad times where blood pressure is really low, heart rate is constantly high that I will have difficulty even walking really, and that getting up induces loss of vision and dizziness, elevated HB etc. Thankfully I have improved in condition past that, otherwise I don't think I would exercise to be honest.

I have my eye on the Moto 360 Sport Android Watch, I hope that it has the ability to alarm on heart rate. What HR monitor are you using that has an alarm? Does that MIO one have an alarm? Something that constantly monitors would be perfect.

 

[*GG*]

I've ridden my bike while sick and still working, never been a runner. Rarely mentioned it here, because people would probably think I don't have CFS, and Fibro and Myofascial Pain Syndrome. Also, been diagnosed with small fiber poly Neuropathy, sleep disorder, IBS etc..

GG

 

[Sea]

I'm a bit weary of getting CPET done, do they take you all the way to V02 max?

The Workwell group do take you to VO2 max, but only briefly. The test ends very soon after you reach that point. I have heard of others having a submaximal CPET but I'm not sure how much useful information that would give you. I guess at least knowing your AT would be helpful.

Given that you are able to exercise a considerable amount (relatively speaking) and that you put yourself into PEM lasting a week or so, I think you would possibly be surprised to find that exercising above your AT for a considerable length of time may have more effect and take longer to recover from than the maximal CPET. I'd recommend discussing your situation with the Workwell group if you can. I've found them helpful via email.

I have my eye on the Moto 360 Sport Android Watch, I hope that it has the ability to alarm on heart rate. What HR monitor are you using that has an alarm? Does that MIO one have an alarm? Something that constantly monitors would be perfect.

I have an OMRON HR monitor with an alarm. Not sure of the model number offhand but it's probably a superseded model anyway. It monitors continuously. It works well but the chest strap does irritate after a while. I tend to only use it intermittently because of that.

I haven't yet been impressed enough with the strapless HR monitors available to try one for myself. I don't think their technology would work for me. My iphone app that works on the same principle as the strapless ones can find my HR when I'm sitting down but not when I stand up. It has no such trouble detecting my husband's HR.

 

[SOC]

I'm not sure exactly why you raised this point,

My only point is that most diagnosed PWME cannot exercise as much as you do because those diagnosed based on a 50% reduction in activity level by definition have little energy to exercise. As a consequence, it's going to be hard to find PWME with much experience with exercising safely at your level.

Personally, I think 50% reduction in activity level is a poor measure of whether one has ME. My feeling is that PEM is probably the defining factor and that can occur in people at almost all levels of activity. If a runner only gets PEM after running a marathon, it's still PEM and it's an abnormal reaction to exercise. That person would not fit the 50% reduction standard, though, because not being able to run a marathon doesn't reduce a person's activity level by 50%. That person can still do most of what they could do prior to developing ME. I suspect there are many people who actually have what could be considered mild ME, but don't realize it because their symptoms are not debilitating at the level of patients who can be diagnosed by current criteria, much like HIV-positive patients were not known to be ill before the discovery of the virus because they were not as ill as AIDS patients. That doesn't mean they weren't dangerously ill; it just wasn't recognized.

In my own case, I was running an average of 20 - 30km a week at best, and housebound at worst. It really just highlights the point that everyone is different, even if I could still run 10-15km (I wish!), I would still meet the criteria.

I'm not sure that's entirely accurate. Being able to run only half as far is NOT a 50% reduction in activity level overall. That's a 50% reduction of a specific activity at the high end of exertion. Not the same thing. What would be closer to a 50% reduction overall would be if you could keep working full time and taking care of your home, yourself and your family, but not be able to run anymore. All that said, I don't think the 50% reduction in activity level is a very sound measure of whether a person has ME or not, so it's probably moot.

The Doctor who diagnosed me was on the panel, so I'm fairly confident that the diagnosis is correct, in case you were meaning to caution at that possibility.

Nope. Based on what you said earlier, I don't have any doubt that you have ME. PEM is PEM regardless of how much you can do before you get there.

I'm a bit weary of getting CPET done, do they take you all the way to V02 max?

Given that you can run atm, you probably won't suffer overmuch from the CPET. The bike test only took 8 mins for me, iirc. If you run longer than than now, you'd probably be okay. It's also possible to do a submaximal test, only up to (or just before) your AT if all you want to know is your AT. There is some concern that the AT on the second day of a 2-day CPET would be lower because of the effect of compounded exercise. If that's the case, then the submaximal or 1-day CPET tests would give an AT somewhat too high. Still it's better than blindly guessing at your AT, or worse, using the calculated AT for a healthy person. You can always decide to stop exercising below your measured AT if you find yourself still PEMing.

I have my eye on the Moto 360 Sport Android Watch, I hope that it has the ability to alarm on heart rate. What HR monitor are you using that has an alarm? Does that MIO one have an alarm? Something that constantly monitors would be perfect.

IIRC, the Mio Alpha 2 has an alarm. I've still got my rotten old chest-strap Omron, which I only need to use now when I'm doing something outside my normal range of activities. I hate the chest strap, but I like the continuous monitoring and the alarm feature because I don't have to keep an eye on it all the time. I'd get a Mio, but I couldn't afford two of them and daughter was higher priority at the time. The Moto 360 Sport Android is definitely outside the budget.

 

[Mij]

@M Paine have you seen this video? Go to 25:28 mins It might make you think twice about running. I'm a former long distance runner and this rings true for me.

 

[ScottTriGuy]

@M Paine have you seen this video? Go to 25:28 mins It might make you think twice about running. I'm a former long distance runner and this rings true for me.

The woman in his example was not listening to her body. She was obsessive in pursuing running. Is that what rang true?

No one is suggesting @M Paine , nor is he indicating, become obsessive and ignore his bodily signals. Sounds like he's doing a pretty good job in determining where that invisible threshold is for him.

I'm curious what helped you recover as much as you have?

 

[SOC]

The woman in his example was not listening to her body. She was obsessive in pursuing running. Is that what rang true?

I see no indication in Mark Van Ness' report that the woman was obsessive or that she wasn't "listening to her body". Nothing he said suggests that.

The signs that we are overdoing are not necessarily easy to detect if we don't overdo to the point of complete collapse. This story gave no indication that the woman was exercising to collapse. She exercised to an extent she thought was improving her condition and found by testing, that her condition had deteriorated. Van Ness did not report that she came in feeling worse or with evidence of multiple major PEM episodes. In fact, my impression is that she expected to find out that all that exercise had improved her condition and was surprised to find it had just the opposite effect.

The myth that most of us athletes grew up on, that exercise has to make you better, is a hard one to let go of. The myth can lead to an addictive-type attitude in which we so much want to believe that exercise=good that we will actively harm ourselves rather than let go of the belief. It can be so bad that some of us refuse to get the appropriate testing or do the necessary monitoring to see what we are actually able to do and stay within those limits because we don't want to admit reality and give up our addiction.