I’m a few years behind the times here, but I finally bought a heart rate monitor. I actually ordered one from Amazon ages ago when I was looking for a pedometer, but wound up returning it because I didn’t want to deal with the chest strap and bulky watch. Little did I know that it could be a very useful tool in managing ME. So, after watching this video made by Dr. Nancy Klimas, director of the CFS Clinic in Miami, I decided to buy another one with the goal of increasing my fitness level and muscle tone ~ carefully, over a long period of time. Apparently I still wasn’t convinced it was going to be a good investment because I went for the cheapest option with decent reviews and got this monitor made by Pyle. I don’t want to go to the trouble of returning it again, but, be warned: it is huge. It’s working and I’m managing to use it with consistent results, but the chest strap – as tight as you can make it – slips down a lot and I know there are straps and watches made for women out there. I wish I’d researched a bit more.
You can see all three of Dr. Klimas’s videos and get more info at the Exercise Group page created by Dan Moricoli of the ME-CFS Community website (you might have to create a username and password to access it). If you are interested in more details, I recommend you read this article by Bruce Campbell and this post by Sue over at Learning to Live with CFS.
The upshot is, people with ME/CFS should stay in aerobic “exercise” because, once your body goes over the anaerobic threshold, it is using energy pulled from the muscles and this can cause post-exertional malaise. If you can’t afford to fly to Florida and get all the fancy testing, you can roughly calculate your anaerobic threshold as 60% of your maximum heart rate with the following formula: (220 – 50) x .6 For me, that is 108 bpm.
What I have learned in the last week of wearing the heart rate monitor is amazing. I set the alarm on the monitor to go off when I hit 105 bpm, which, it turns out, is a lot. Lying down, my heart rate is in the 60s. Sitting up, it is in the 70s. Doing any movement puts it in the 80s and 90s. The over-105 alarm goes off every time I stand up. It doesn’t stay up if I continue standing, but it takes a few minutes to come down. The alarm goes off when I do anything to do with laundry ~ the motion of reaching down, pulling sheets out of a washer or dryer jacks my pulse up and keeps it up. I’ve started to do laundry sitting on the ground, moving my arms carefully (luckily, we got front-loaders last year). The alarm goes off every time I climb the few stairs to the bathroom and, surprisingly, EVERY time I pour a glass of water and drink it. I don’t know if it is the action of pouring from the filter jug or lifting the glass to my mouth or swallowing or all of it. That’s some serious exercise! Whenever I take a bath, my heart rate stays high for a very long time afterwards. I drink a lot of water in case it is caused by low blood volume, but it doesn’t seem to help. The flip-side is, I can walk my laps around the garden without going over 100 bpms ~ as long as I don’t move too quickly and take little breaks. I’m still only doing 3 or 4 laps a few times each week. I CANNOT WAIT until I am able to take a proper walk. I just want to be able to walk for half an hour straight. In the dog park. It would be glorious.
If anyone has any experience with using the heart rate monitor program for ME and can give me advice, I would love it. I’m trying to figure out where the parameters are… I guess I just have to figure it out the old fashioned way: if I crash after activity, I did too much. My “better” days ended on Easter. I’m not feeling terrible, but I’m not feeling good. If those days of slightly-more-strength came back and stayed back, I could see myself working again. Maybe even thinking about life every day and not the incessant head-to-toe analysis of what my body is doing.
Note to E. and my brother T.: name that tune before you look: Title Credit.
very interesting. I don’t use a heartrate monitor, but I do check my blood pressure when I feel bad and of course it includes heart rate. After standing, showering, or doing ANYTHING that requires standing up, my heart rate is also over 100, which makes me feel weak like I need to sit down. Just checked it afer my shower today because I had to lean on the sink just to finish brushing my teeth after my shower; my heart rate was 117. This has to do with the neurocardiogenic syncope/vaso vagal syncope and dysautonomia (our automonic nervous system malfunctioning,) which is very common in CFS and I think is the most debilitating.-If we can’t stand up to do anything without our hear rate rising so fast and then falling, that is a problem. This explains the lightheadedness, dizziness, fatigue.. so many of our CFS symptoms. I see a cardiologist for this issue and I’m on ProAmatine for it, which helps somewhat…sometimes not. but I don’t think I could survive very well without it. On the other hand to treat it naturally you can read online, but increase salt intake, stay hydrated, don’t stand up too fast, wear compression stockings, cross your legs when you sit, or sit with them elevated. I know since I’ve been a kid I can’t stand sitting normall in a chair, I HAVE to have them elevated, like in a recliner or a foot stool. I will tell you one thing, living by myself with this condition is SO hard! I used to be married and it was hard then, but what a difference it makes to be completely alone.. I have to do EVERYTHING by myself and it’s made my health decline even more over the last 3 years.
Hmm going by the calculations (on http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope Note: Maximum heart rate is 220 minus your age. For a person who is 50 years old, 60% of maximum heart rate is (220 – 50) x .6 = 102 beats per minute.))
my max heart rate should be 110. and mine was 118 after my shower and brushing teeth.
This is really interesting, I haven’t used a heart rate monitor before it sounds like it would be really good to get one.
I would definitely echo what others have already said. Sit with legs up rather than hanging down. Reaching overhead is generally awful, as is bending over from the waist. Standing stationary can be worse than walking.
My monitor goes off every time I stand up too, except mine stays there. Makes it challenging to do much… 😉 One of the hardest things for me is respecting the monitor when I don’t yet have the feeling of going over. If I feel okay, and I really want to do it, it’s brutal to stop anyway. But in the long run, the monitor is right more often than my gut. 😉 I KNOW that avoiding crashes and getting off that roller coaster is key to actually improving and to preventing permanent damage. But it’s so damned hard every single time…