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Adrienne Dellwo

Chronic Fatigue Syndrome, Exercise & the Heart

By October 30, 2009

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Dr. A. Martin Lerner: Protecting the Heart

When it comes to chronic fatigue syndrome (CFS or ME/CFS), exercise is a contentious subject. That's because of a symptom called post-exertional malaise; exertion makes symptoms worse. Still, some doctors, researchers, and official organizations recommend graded exercise therapy (GET) as a front-line treatment for the condition -- sometimes ignoring all other treatment options other than possibly cognitive behavioral therapy (CBT). Some people say GET has worked for them, while others say they've been made worse by it.

Dr. A. Martin Lerner, an infectious disease specialist who himself recovered from ME/CFS, says anything that raises the heart rate of someone with this condition is dangerous, unless they're well on their way to recovery (at a 7 on his EIPS chart.) He says this is because, in his practice, he's seen that ME/CFS does involve the heart.

Dr. Lerner says people with ME/CFS have a rapid heart rate when they're at rest, on top of low blood volume. As the disease progresses, he says, the heart muscle becomes weaker.

Dr. Lerner has published studies about an abnormal heart function in people with ME/CFS, showing dysfunction even at normal daily levels of exertion, abnormal movement both at rest and under stress, and T-wave abnormalities distinct enough to provide a diagnosis.

To check for those heart problem in his practice, Dr. Lerner uses ECG (electrocardiogram) and a Holter monitor (a portable monitor you may wear for a couple of days.)

For those in the early stages of recovery, Dr. Lerner says, "Certainly, it is helpful to not just let the muscles atrophy, but sitting up is actually a muscular activity." He adds, "Walk, live, but no exercise until you're at a 7, because if you exercise before that you're going to go backwards."

When it comes to gentle exercise that doesn't raise the heart rate, Dr. Lerner seemed fairly neutral, and I spoke to one of his patients who says he did grudgingly OK yoga for her even though she's nowhere near a 7 on the scale. However, she's careful not to do anything that will raise her heart rate.

So should you follow some doctors' recommendations to exercise, or heed Dr. Lerner's warnings about cardiac problems? That's a tough question, especially since most doctors wouldn't know what to look for on tests even if they agreed to perform them. Dr. Lerner recommends acquainting doctors with the published, peer-reviewed work done by him and others. If you go to pubmed.gov and type in Lerner AM cardiac, you'll get a list of research abstracts to take to your doctor. You'll also find information on some of Dr. Lerner's heart-related work on his website: Treatment Center for Chronic Fatigue Syndrome.

I know -- a lot of doctors will never take the time to educate themselves on this. Here's my idea: start keeping a record of your resting heart rate. If it's high (more than 100 beats per minute), talk to your doctor about the possibility of heart problems. At least that's something that usually gets their attention! Your test results could help you make some very important decisions.

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Comments
October 30, 2009 at 9:56 am
(1) Liz says:

I mentioned to doctors for years that I had a high pulse. And they’d even take it and see that it was over 100 resting. But they’d STILL dismiss that (before and after the CFS/fibro diagnosis). They’d say that I was just nervous, or dehydrated, or whatever, and not to “worry about it”. And I do worry some because there is a lot of family history of heart disease (it even killed my grandmother at a fairly young age, I believe). But the attitude I get is, “Oh, you’re too young to worry about that. I’m sure there’s nothing wrong.” And maybe everything is alright, but when I do exercise my heart rate spikes up to 188 or so.

I finally got some answers from my rheumy, who diagnosed me with POTS. Still, I’d love to get everything checked out by a cardiologist. Finding the time, energy, money and a referral isn’t so easy, though.

In the meantime, I try to exercise some and it does seem to make things the CFS worse. But not exercising makes everything else worse because I just get weaker — and heavier. My husband and I are trying to get back into the habit of walking together every other night or so. I like that, but the summer heat kept me from doing it for a while.

October 30, 2009 at 5:30 pm
(2) Kathleen says:

I recently tried to start exercising and when I went to my Dr’s appt, my blood pressure was way too high. I had gotten it under control and asked my Dr. why, if exercise is supposed to bring blood pressure down, mine was so high. I guess after reading this article it makes a little more sense. As if anything about this illness made sense!

October 31, 2009 at 1:55 am
(3) Christin says:

My take on it is that you are the sole person who is responsible you his or her body, well being and health. Listen to everyone in your medical team, discuss your concerns and than make up your own mind. Don’t follow blindly what a dr. tells you to do. If a dr. suggest a medication to me the first thing I do is research it before taking it and than I start on 1/4 of the dose. It’s my body and my life and I’m in charge.

Educate yourself and most of all listen to your body. If it doesn’t feel right trust your instinct. In the end it will be your decision.
i admit it’s not for everyone, some people do better if told what to do. I don’t.

October 31, 2009 at 4:59 pm
(4) Will says:

It’s important for everyone to get a stress teat. I had and still have CFS and Fibromyalgia and have had it for years. It comes and goes but three years ago I had a heart attack. All my Doctors missed checking out my heart and told me I was anxious, it was the fatigue from the CFS, etc. I had shortness of breath and should have had the heart checked. I’m OK now but please go get a stress test if you think it could be your heart, no matter your age, weight or family history-get your heart thoroughly checked out!

November 1, 2009 at 4:49 pm
(5) Sandy Birkenmaier says:

I have fibromyalgia, without CFS. The fibro was diagnosed 12 years ago, but I’ve had “odd” symptoms for over 40 years (since elementary school).

Several years ago, I was using a ski-machine exerciser to try to get in better condition. (I had to stop eventually, because it made my knees much worse.) It had a pulse monitor that clipped onto my earlobe, and I would try to push myself to get my heartrate up to the “optimum” level. No matter how fast I went, though, my heartrate stayed in the range of 80-85 beats per minute – until I stopped, that is. AFTER I stopped, and was just standing still, my heartrate would climb to 120-130 bpm, using that same monitor, and stay there for several minutes.

I’ve mentioned this to several people. The usual response is “How odd. That shouldn’t happen,” but no one has recommended I see a cardiologist. Maybe I should push my doctor to give me a referral.

November 16, 2009 at 9:14 pm
(6) AutumnSpencer says:

I have had fibro and mps since my early 20′s. I have done well on the most part. I do exercise. I have done Karate from 10-17 and then weight training and cardio. Then, it hurt too much. Until I was diagnosrd at Temple,Tx, I could not do what I wanted. Dr. Jeffery Jundt was wonderful. We tried Halcion and Sinequan. I did not get better. One of my nurse friends suggested Prozac & Xanax. I made my mind I would have to start below 0. It took a year to lift a 5 lb weight. Ater I could lift 25lbs and do a curl and ride my stairmaster 30 min., I told the Dr. He was so excited. I have done well,but I do excerise. My pulse rate was 50-60. I have a hole in my heart that I was born with,but the drs do nothing. I itch,hurt everyday, fibrofog,everthing..reactive hypoglycemia….Ya’ll Know. I have to sleep. Exercise hurts, but it gives me more endurance to work,etc. I love this site, because things are so informative.Adreinne has really taken on a great job to educate us. I am very lucky. I could not carry groceries or walk without getting so tired. You have to start slow and not compare what you used to be. You are like a baby. You are stating over. Please find a Dr that will work with you. Does anyone tremor? As I have aged, I have started tremoring more. I havae not been working out, but I have lost strength. When I was the strongest, I could feel my body tremor on crunches. Is it reactive hypoglycemia, the meds, the nature of the beast. Thak you Adrienne for this website.

January 19, 2010 at 10:43 am
(7) Nathalie says:

What Sandy is describing is very possible!

Here is the research that was done on the subject by Dr Alan Light and his team!
They were able to show that muscular fatigue/pain is real in CFS patients.

http://www.co-cure.org/Light.pdf

January 25, 2010 at 2:13 pm
(8) Sandy Birkenmaier says:

Thanks so much, Nathalie. This is really cool research.

April 4, 2010 at 1:16 pm
(9) Rex Mirfin says:

I have had CFS for 15 years and cannot exercise – I can walk maybe 150metres max. ICan do more but if I do I suffer tension and insomnia – obviously it is causing severe stress. What I want to know is how I can have a healthy heart without exercise. I have an extremely healthy diet plus no alcohol, sugar, salt, tobacco, red meatr, coffee – but is there an actual substitute for exercise. Yoga perhaps – but even yoga causes the tenson an insomnia.Please advise. Rex

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