HEART RATE MONITORING TO PREVENT POST EXERTIONAL MALAISE
Recently I have spent time reading about how monitoring your heart rate can help with pacing activities in people with M.E. / CFS - at least with physical activities, possibly not so much with mental, psychological and emotional activities but its a start. There is science behind this and whilst I have read a bit, I have been struggling with my cognitive functioning and reading/taking on board lots of information, so I have just read shorter bits, tried to digest it and gone back for more when I could. Writing this blog is serving a dual purpose both as blog to share but also as a kind of journal for myself, somewhere to keep my information, experiences and progress, so I can put my info together to help me to make sense of things when my brain is struggling to retain or make sense of things. So I am summarising what I have read and understood here, adding in links for myself and others to refer to.
Before I start with sharing I want to say that I am not a medical expert and that anyone reading this, intending to try these techniques should research everything for themselves, look for sound medical evidence if you can find it and discuss with your medical healthcare team ( Dr / M.E. specialist etc) first. I am still reading up around this and attempting to do this all as safely as possible. I do have a background as a nurse and know that I am not doing anything dangerous in the short term - there are waiting times for M.E. clinics and I do intend to discuss this with the M.E clinic that I used to attend, but it could be several months or longer before I can do so. I find that you can generally get good information on this specialist M.E. websites rather than sites designed for people using HRV monitoring for physical fitness. I learned as a nurse that there are many people who have vital signs and blood results that are outside of normal guidelines, this is not always a reason to panic, but can be a reason to book in a consultation with your health professional just to ensure there are no issues. Guidelines are simply that - guides. I do highly recommend discussing trying any new M.E management techniques with your specialist or dr.
For anyone new to M.E - we have an intolerance to exertion, even mild exertion ( physical, psychological and emotional) can result in severe consequences in the form of symptoms - generally one of the best known ways to manage M.E is to pace all your activities - literally everything you do - physical, psychological, emotional, all broken down into shorter manageable tasks spread over the day. We are supposed to find our baseline of what activities we can manage daily without causing the worsening of symptoms, this is different for each person and can take a great deal of trial and error to work out. We are advised to stay within this baseline for most of the time and only increasing activities incredibly carefully and slowly, because extra activity can cause symptoms which are totally out of proportion to the activity undertaken.When I mean out of proportion - this can mean brushing teeth or showering can leave a person with M.E feeling like they have climbed Ben Nevis ( a 4000+ ft mountain) or worse.
We are advised to "listen" to our body, to help us determine our baseline, so any adverse signs and symptoms worsening should alert us to be aware that we may be pushing past this baseline. Its not easy to do, even after 18 years I still get it wrong. Then you get to a point where you have done well, felt a bit better and in the excitement of feeling semi normal you try to do things that you miss out on doing most of the time, pushing way past your baseline, with awful consequences and "crashes". It has been suggested that heart rate monitoring can help us avoid such crashes, acting as a tool to aid us in keeping within our baseline of activities. This is where heart rate monitoring comes in.
The Anabolic threshold ( AT) is the point at which your heart rate goes beyond the limit where your body starts drawing on reserves which we simply do not have, consequently triggering post exertional malaise and worsening of symptoms. There are several ways to determine your own specific AT using different calculations such as ones on the various M.E. websites, they do differ slightly. The AT for a healthy person differs from people with M.E, so you do need to work it out using a specific calculation for M.E., it is estimated the people with M.E have an AT that is just 50-60% of a healthy person. You can sometimes get help to determine your AT through your DR, some people find theirs during cardio pulmonary testing and other tests during investigations into various symptoms that frequently occur alongside M.E, such as POTS. If stuck with this aspect it could be worth discussing with your Dr.
This article explains really well what PEM is, how to calculate AT if you have M.E and using this to help pace and prevent worsening symptoms. Using a Heart rate monitor to reduce PEM
Another article explaining AT and preventing PEM Using heart monitor to prevent PEM 2 There are lots more articles explaining if you google.
I calculated mine using different calculations. Results suggested 99, 82.5, 103, 86, 92. I have decided to start out using an AT of 90 to start with and I can adjust this over time depending upon results.
At the time of starting all this I had ordered a cheap smart watch to monitor my heart rate as I figured that would do initially, knowing I could periodically take my own pulse quite easily to double check its accuracy. However, as I read more I realised that a reliable chest strap heart monitor would be a much better idea, this was due partially to reading up on heart rate variability and how this can be yet another tool to assist me. I will discuss heart variability further in part two of this blog as I am still looking into it and wanting to concentrate on using AT first, plus I am also in the midst of a week of cold shower and deep breathing so cant take on any more. But for anyone with M.E. who is finding this interesting I would highly recommend investigating HRV as well.
The heart monitor I am using is a Magene H64 chest strap (£20) - it has 4 star rating from over 1334 ratings on Amazon so must be reasonably reliable and functional. I have checked the readings against my own pulse taking and found it to be correct each time. Although a couple of times my heart rate recorded on this was 20-30 beats higher than that recorded on my smart watch (which is also reliable up to now), I was not quick enough to check which was correct. There are some issues which can cause a heart rate to be faster than the pulse at the wrist, something I need to investigate. I do have an issue with occasional arrythmias, which has been investigated by cardiologists previously, possibly something that needs further investigation now.
The smart watch that I am using is a cheap Blackwatch smartwatch (£20), 4.5 stars reviews from over 5000 Amazon buyers, so guessing its fairly reliable too. Again, my own testing shows its within a few beats when I check my pulse manually. I'm in the process of trying out a few different apps on my phone alongside the monitors, one for my phone which is Gloryfit - it monitors sleep, heart rate, temperature etc. For the chest strap I am currently trying 60 beat monitor app where you can type in the heartbeat count where you want an alert to remind you to slow down and rest. I find the alert useful and not too noisy when outdoors. Sweetbeat HRV is the other main app that Im using as it gives numerous readings from the chest strap, including hrv, but I cannot work out how to get an alert when reaching my AT.
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There are numerous free apps and a few paid for which can be used. I am interested in a couple of specific apps, which I'm investigating - WATCHME and Welltory - both recommended by people with M.E.
So far this week on days following where I have kept the total time above my AT to an 90 minutes or less I have felt much less PEM, where on the 2-3 days following where my heart rate has been over my AT for 2 hours or more I have experienced more PEM and symptoms. Obviously I am only at the start of this new AT led pacing journey, so it will be interesting to see how it helps me. I have discovered that my heart rate frequently seems to be around 120-155 at night whilst sleeping, this can occur for a total of an hour of my sleep/overnight resting time, I may chat to my Dr about this during my next appointment to see if it needs investigating and find out what I can do to help lower it during sleep. I already meditate morning and night, as well as keep stress low, I am unsure what else I can do to help get my sleeping heart rate to normal.
So far this week I have made adjustments based on when my body reaches its AT, when I brush teeth I go slow, and sit down as it always pushes my heart rate to 120. Even putting make up on, kneeling in front of a mirror takes me to 110, so I now sit on a bed to do it. Showering takes my heart rate to 140-150, so we finally bought a shower stool and I just shower very slowly, sitting down for most of it. Washing or drying my hair both result in major heart rate changes, as does anything involving lifting my arms above shoulder height. I change the position of my arms, trying to keep only hands above shoulder height as much as possible. As its summer I will avoid drying my hair ( unless going somewhere special) if it pushes my heart rate over the AT - be prepared for super wavy hair if you havent seen my natural waves! Walking upstairs usually leads to a heart rate around 120-130, so I go super slow and sit down once or twice as I need to. I am using a stool in the kitchen more and walking very slowly more often as both help keep me within my AT. Lots of little adjustments
Resetting my autonomic nervous system
