I came down with chronic fatigue syndrome (ME/CFS) very gradually after contacting something called labyrinthitis – a balance disorder caused by an inner ear infection. I caught the virus around Easter 2010. I recovered, but relapsed, recovered again, but then relapsed again, etc. This continued for about two years until eventually the symptoms became permanent. Following the usual negative blood tests, I was diagnosed with ME/CFS.
Hannah knew she had to pace….but how much?
During the obligatory 6 months’ wait from GP to ME specialist referral in the UK, not realizing how the illness works, I continued to push myself and got worse. I was then given general pacing instructions by the specialists I saw.
They don’t really tell you how strict you have to be, though, (probably because they don’t know) so even though I was pacing, I wasn’t doing it enough, and still was getting worse. I was going into work on Mondays and Tuesdays but getting so ill I could barely walk by Thursday. I cut my hours for a few months, but it still wasn’t enough, and eventually I went on a 6-month sick leave.
CBT/GET
Throughout this time, I was also accessing Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) via the NHS, as per the NICE guidelines. The CBT was as a supportive treatment, meaning they don’t expect it to cure the ME, just support you emotionally whilst you come to terms with having the illness and the life changes you have to make. It was delivered via telephone by one of the psychologists on the team, and it was actually quite helpful in dealing with my new limitations at work.
The same psychologist also helped me with GET and pacing as you could only access one of the treatments offered (I’d only picked CBT as it had the shortest waiting list!). She wasn’t that prescriptive with the GET, so it wasn’t awful, but because the premise of GET is still to push yourself, albeit it in tiny amounts, it still made me worse over time.
Heart Rate Monitoring
I came across pacing using a heart rate monitor (HRM) via one of the Facebook groups for ME that I belong to. I liked the look of it, because it offered a more scientific way of pacing the physical activity I was doing (counting steps and avoiding activity) – so I joined a great heart rate pacing group and learnt the basics of just staying below your estimated AT (anaerobic threshold) (109 bpm for me).
It definitely helped me prevent crashes, but I was shocked at how easily my HR got above my AT, and my lack of discipline meant I found it very difficult to stop what I was doing when that happened and rest.
Monitoring her heart rate helped her move forward.
I tried to go back to work on a very gentle, phased return, but I still couldn’t even manage 2 hours on a laptop at home, so I was eventually let go. I’d basically gone from mild to moderate thanks to the GET, and work was just too much for me cognitively, regardless of any HRM pacing I was doing for physical activity.
I was very sad to leave my job as a business analyst. I loved it and felt great pride and achievement in what I did, but I hoped it would mean I could concentrate on pacing and recovering. They discharged me from the ME/CFS specialist service shortly afterwards (despite the fact that I’d got worse), and back into the care of the GP who knew nothing about ME.
Rolling PEM
With a bit more research via the HRM Facebook groups, I learnt about rolling PEM (post-exertional malaise) (and PENE) (post-exertional neuroimmune exhaustion), and knew that it very much applied to me, and is just one of the (many!) reasons that GET doesn’t work.
Rolling PEM is when you don’t recover fully after each day or crash, and the PEM accumulates gradually over time. This accumulation of PEM means you get progressively worse over months or years as you fail to recover completely from each incidence of overactivity. This was the key for me and made me hopeful that perhaps I could get back to mild severity if I stepped up my HR pacing game.
As per the advice of the Workwell Foundation, I started resting every 2 minutes when my heart rate was in its ‘exertion’ zone (85-109 bpm) and was much more disciplined about not going over my AT.
But I was still folding those last few t-shirts despite my arms starting to ache and my heart rate alarm jumping, still taking the stairs in one go and resting at the top to circumvent the 2-minute rule, when it would have been better if I’d climbed up slowly and rested halfway.
I was doing very easy recumbent stretches to ease the hypermobility, but instead of watching my monitor, I was still waiting for the first signs of ‘the burn’ or the alarm to go off telling me I was in the danger zone. I was doing significantly less than when I was healthy, but it still wasn’t enough.
Heart Rate Variability Monitoring
Then I started monitoring my morning heart rate variability (HRV) readings. Your HRV tells you whether your nervous system is in balance or whether you’re swinging into either parasympathetic or sympathetic dominance, i.e. whether we’re crashing, so our very own PEM detector.
Now let me say that I only did GCSE (General Certificate of Secondary Education) biology, and I have forgotten it all, so I don’t really understand the science, but after 3 months of HRV monitoring, I knew exactly what the parasympathetic or sympathetic states feel like, and I understood my crashes much better.
For instance, you know that family gathering you went to where you were fairly disciplined, and the next day you feel good, energetic even, so you think you got away with it?
Heart rate variability monitoring helped Hannah to pick up the subtle signs that her system was swinging into fight/flight
Probably not. The app often showed my autonomic nervous system swinging into sympathetic dominance – the fight or flight response – the next day. That’s the first stage of a crash for most, and is characterized, oddly enough, by feeling hyper, and happy, with your internal dialogue yabbering like an excited 5-year-old coming home from school despite a small but noticeable increase in fatigue, aches and pain.
I had subtle physical signs too, like trembling or vibrating in my veins, and a lump in my throat, and finding it hard to sleep/rest. Those more subtle signs are hard to recognize at first, especially in the morning because I felt (relatively) so good.
That phase lasts anything from 2 hours to 2 days for me. Afterwards the real pain of the crash descends, and I’m bedbound again, forced to rest for as long as it takes.
Eventually, after much resting, I’ll swing over to the parasympathetic – the rest and digest side – which can actually be bit of a relief for me, as I’m prone to insomnia and the lethargy I experience helps me to sleep as much as possible. It’s also the first sign that I’m recovering from the crash.
If I’m swinging either way (periods of being hyped up, and and lethargy), then I cut my activity in half, put the phone away (because in my sympathetic hyped-up swing I’m scrolling through social media like an addict thanks to the fake energy) and rested as much as possible.
So, it was only with HRV monitoring that I truly learnt my limits. I learnt that I cannot chat to new people for longer than 10 minutes or watch anything particularly scary on TV for very long (no more Walking Dead binge-watching!). No reading or Audible for any longer than 30 minutes.
If I’m doing anything physical, I’ve learnt that I can’t feel any burn, ache or any type of effort expenditure without paying for it later. I learnt that you have to listen to your pain and body as well as your heart rate alarm to avoid crashing from physical exercise.
Recognizing how fragile her system was she began to pull back more
But it was all very much trial and error at first. For instance, to work out what physical stuff I could do safely, I collected some recumbent exercise ideas from YouTube, picked the ones I thought I could do, and experimented very gently and gradually, e.g. arm swings.
With each exercise, I did repetitions until my HR got to 95, or my limbs started to feel an almost imperceptible ache and noted down to do a few less. During any period of experimentation, I’d keep the rest of my day as similar as possible, so that I would be able to tell it was my experiment that caused any crash and not something else.
I experimented for a few weeks until I got a couple of exercise/stretching routines (with rest breaks after 2/3rds of the exercises built into the routine) that were designed to either loosen me up or strengthen my core, in the hopes that this would help some of the hypermobility aches and pains.
Once the routine was set, I then worked on other aspects of activity, seeing how much I could cope with, and doing a lot less.
I stuck to all the limits I’d set, pacing very strictly for another three months. I was just concentrating on getting a stable morning HRV and trying to eliminate the rolling PEM I’d accumulated over the past few years.
The Process Finally Works!
As I did this, an amazing thing happened. By month three, my heart rate became less reactive. An activity that would’ve put me over my estimated anaerobic threshold AT (109bpm) and into the danger zone previously was now only just getting me into my exertion zone (85bpm).
Three months of strict pacing worked – her energy envelope began to expand.
So, I started increasing my activity, very slowly, very carefully. I went from only being able to walk 100 yards with walking sticks to being able to walk 0.5 miles with sticks! I was also doing easy recumbent exercises daily (still with no burn allowed!), I discovered my energy envelope had in fact grown as a result of me doing significantly less – the opposite of GET theory!
Don’t get me wrong; there were mini crashes as I experimented with activity, but because I was monitoring HRV, I could tell that I’d overdone it, and when I’d recovered.
Life Interferes
I had great plans for my pacing, but then got pregnant (yeah!), which was great, but it raises your BPM and basically made it impossible to pace properly. Now, nearly 2 years on, I’m still unable to take accurate morning HRV readings due to the various mum responsibilities, but I’m still so grateful for HRM pacing, because I learnt so much about what crashing feels like, and what overdoing it feels like for me, that I’ve been able to pace fairly successfully without all the data.
I would recommend this approach to anyone with ME/CFS. It’s truly a scientific and objective method of pacing and has really taken the guesswork out of my day.
It’s also been a struggle to stay below my AT as I can’t just put the baby down and rest when I need to. However, I know that any effort I make is better than zero effort. Just reducing the amount of times I go above my AT and the amount of time I spend in that zone will reduce the severity and amount of crashes I have.
Resources
- Workwell’s Worksheet on Activity Management with a Heart Rate Monitor
- Check out how one person improved their cardiovascular functioning using a heart rate based monitoring program
Check out how Karmin used HRV monitoring to improve her ME/CFS:
- Your Crash in a Graph? How Heart Rate Variability Testing Could Help You Improve Your Health
- Heart Rate Variability (HRV) An Underused ME/CFS/FM Management Tool: PT II – Surveying the Landscape
Check out more pacing and exercise resources
Hannah’s Approach
Measuring Maximum Heart Rate
The only way to find out your true AT, though, is to have a 2-day CPET. If you decide to go down that road, make sure you read all the info on the Workwell website, and ensure whoever performs the test is aware of all the information too.
There are now 2 ways to estimate your predicted heart rate at anaerobic threshold (HR at AT – the point at which you rely more on anaerobic energy production).
The method I used is the calculation: (220-your age) x 0.6 = HR at AT.
From what I gather, the 0.6 represents the percentage that your severity impacts your functionality. So, mild ME patients might choose 80%, moderate 70 or 60%, Severe 50%+. It’s quite an individual thing, but err on the side of caution. I used 60% but arguably when I became housebound, I should’ve changed it to 50%. You will be able to tell over time. So, back then I calculated mine to be: (220-39) x 0.6 = 108.6 bpm
However, the Workwell Foundation’s more recent findings suggests that most people with ME/CFS met their anaerobic threshold at about 15 beats per minute above their resting heart rate. (Watches can provide average resting heart rates.) Workwell recommends charting your resting heart rate while remaining flat in bed after wakening.
There are two types of wearable devices that continuously measure your heart rate, a wrist-watch or a chest strap. The chest straps are more accurate, but as I have fibromyalgia, I can’t wear a chest strap 24/7, so I chose a wrist-watch. (The most popular brands for heart rate devices are (watch or chest strap) Polar, Mio, Fitbit and Garmin, as well as the Oura ring.) I used a FitBit Ionic.
Measuring Heart Rate Variability
Since my watch can’t measure HRV, I bought a chest strap – a £30 chest strap paired with the EliteHRV app on my phone, for the HRV readings. I chose my particular chest strap simply because it was inexpensive, accurate and compatible with my phone and the app I wanted to use.
There are 4 popular apps for this, HRV4Training, Elite HRV, Welltory and SweetBeat. I used Elite HRV when I did it, though I would probably change to HRV4Training now, if I would do it all over again, based on the experiences of others who do HR Pacing.
The measurements themselves are taken in the morning when you first wake up, (after I put the chest strap on). They only take 3 – 5 minutes, depending on your app and chosen settings.
- Coming up – Workwell deciphers PEM symptoms
Thank you for sharing your pacing experience, Hannah — excellent info and suggestions!
I was wondering how you first heard about Workwell Foundation? I agree their work is essential to understanding how to avoid/decrease PEM.
Also, how did you calculate the lower value in your “exertion zone”?
It’s amazing you have been able to mostly continue your informed pacing after having had a baby – and congratulations 🙂
I’m so glad you’ve found it helpful! I discovered the work of the Workwell foundation via the heart rate pacing groups I belong to, as that’s the basis of each group. There are a few of them, and they’re all really helpful. Lots of stuff in the files sections and they all tag threads so that people new to the groups can search for topics/threads.
I didn’t really calculate my own zones, there’s an app in thre fitbit app store that allows you to set an alarm to go off at a certain bpm i.e. your AT. It was actually designed by a fellow ME sufferer! Anyway, the app also works out zones according to your resting heart rate I think.
Yes, couldn’t do any pacing without out my husband being the main carer for both me and the baby. The grandparents all pitch in too (when allowed).
Hello Hannah, I just bought a fitbit ionic for the same purpose, what is that app called?
Hi Eric,
The app is called ‘HRPacing’ by ‘allyann’
Hi Hannah, just found this article via your blog! HRV sounds like just what I need, thanks for explaining that HRV is meaningful for sympathetic/parasympathetic status. You write: ” The app often showed my autonomic nervous system swinging into sympathetic dominance – the fight or flight response – the next day. ” – May I ask what app you used for HRV monitoring? I guess it wasn’t HRPacing because the description https://gallery.fitbit.com/details/240bd0c9-5c5a-4dc3-9a1b-b738c26c5143 does not seem to include HRV.
Also what I am seriously cognitively challenged about is selecting tec online, too much cognitive troubles. So if you see this, may I ask what equipment you used the HRV monitoring app with? Did you also use a Fitbit ionic, or another heart rate monitor? And then does the app for HRV go on the smart phone ?
Thank you for reminding me of HRV monitoring!
The Fitbit ionic isn’t available anymore on the Fitbit website and I see videos on Youtube about a recall. I’m having trouble joining one of the FB HR pacing groups. Could someone tell me if using the HRPacing’ by ‘allyann’ and the Fitbit Ionic is still the best way to go to get an alert if I go above a certain heart rate? I have an apple watch series 5 that I would need to return soon if that’s the case. Basically the main things I want are heart rate alert, step count and timer.
I’m trying to figure out how a person with POTS could do this with the DX including going above 120 bmp as part of the criteria for being DX with POTS. Mine is nearly always above that with standing. Especially if I’m in a worse flare with ME/CFS. My maximum shouldn’t be any where near that high, according to the calculations given. No wonder us POTSies with ME/CFS are so tired and have such trouble with exertion.
I’m happy Hannah that you are doing so much better. And a new mom too. Congratulations!
I just turned my heart rate function on my Fitbit to “on”. It has that calculation in the app for it, under heart rate. Gave the same calculations for me as the formula listed here. 220 – age. Sadly, me sitting still in a chair, puts me above the calculation of using .6 and also puts me into what Fitbit is calling a “fat burning” target rate. And that is with me sitting still not doing anything. Just reading this and typing this observation.
Not guessing I can pace any better than sitting still.
For us POTS people, high heart rates are a normal thing for us. (Actually, the faster heart rate for us POTS people are likely a compensation and trying to get blood and oxygen to our heart and heads. May be trying to save us. Though uncomfortable, may be the lessor of the two evils.)
I was telling someone about this and he laughed and said you get way higher with just standing from sitting. So I thought, let me check just sitting still. Way higher still.
I should have an athletic heart as much and how fast it beats. ?
Issue, have you tried this lying down? I’m hoping that might help you, too.
I knew about pacing w/ fibromyalgia, but it was only after seeing a CFS specialist that I learned the importance of lying horizontally, even for a few minutes. I was surprised that it really does make a difference for me.
It’s hard for me to be idle, but if I’m sitting, I’m usually reading or doing something that requires mental energy; lying down, I’m more restricted and my heart rate lowers.
There’s loads of advice on pacing with POTS in all of the heart rate pacing groups on Facebook that I belong to, as POTs is very common, even among those that do heart rate pacing.
In fact, apparently everybody with ME/CFS has some sort of orthostatic intolerance.
Yes, it does make it more complicated. POTS is very common for ME peeps, and it’s thought most people with ME have some sort of orthostatic intolerance (I get the POTS blotchy legs if I stand still too long). I think that’s why we’re meant to stay reclining as much as possible.
Do check out the Heart rate pacing groups on facebook. I see a lot of threads on there discussing the various interventions used by people with POTS specifically, so it could give you more ideas hopefully.
Hi Issie,
How does your “sitting still” measurement differ from your “lying down” measurement?
Is it possible that you have orthostatic intolerance causing problems when you stand AND when you sit upright (especially sitting up without support for your neck and head)? This has been my experience, although I don’t know how this all affects HRV.
I recently watched videos on workwell site and one said that with pots the heart rate is rising not due to overexertion but is from hypotension. I think there was a section for patients and a male expert. So it seemed to me with pots it is not the best way to study ones pacing parameters but maybe morning hrv might be helpful for overall patterns ?
Hannah, i am so grateful to you for this article.
Thank u for links on graphing HRV.
So grateul for your explanation and your sharing your feelings and experience.
Especially since i can keep returning to an easy to find place—Health Rising—to find your thoughts and links—so i can try to learn.
Congrats (on baby) and wishing you and your family health and safety.
Thank you! X
Me too. This is very helpful and you had to give up a lot of your energy envelope to write it! Thank you
Thank you, thank you for this. The beginning of my ME/CFS journey sounds just like yours. Slowly, slowly working less because I couldn’t, then being let go. I can’t pin point how it all started, but I’ve always had less energy than others. I put it down to having had asthma all my life, albeit mild asthma.
Then around 25 years ago I “burnt out”, due to having too much on my plate, aka stress, and had a year long episode of major panic attacks, anxiety and depression. It felt as if my brain would shatter at any time, and I’d be forever lost, not able to return. Neuroinflammation maybe???
9 months after it first happened I started taking anti-depressants and I gradually began to feel better.
Life went on. My children were grown but I was now caring for my ageing and unwell mum. Then work stopped in 2013, because I was becoming unwell too. After my mum passed I thought I could get back to work but that never happened. I never seemed to “recover”.
My GP was sort of helpful, and diagnosed ME/CFS, but I believe she thought I was faking it. I’m the one who did all the research. I’ve had several GPs since (because we tend to have many move around in my area) and most of them do not take me seriously. Same ole same ole for so many of us.
So getting back to Hannah’s story, I feel encouraged and inspired to dig deeper into my own possibilities and limits by investigating her methods of pacing better. Just “pacing” is a bit vague, and even though I do pace myself, I most often seem to overdo activities, and crash.
Now to see what’s available in Australia. Once again thank you. Leonie.
I’m glad you’ve found it helpful. I think my story is a very common one among ME folk, as is you experience with doctors. I gave up on the GPs being proactive quite some time ago. The current GP is convinced I’m neurotic, so I just avoid going now. Im looking forward to the new NICE guidelines coming into effect in the UK, though I suspect it’ll take awhile to trickle down.
Good luck!
Somewhat related to this, I’ve recently found I can exercise and feel *better* as long as I do it lying in my hyperbaric oxygen chamber (1.3 atmospheres, breathing 95% oxygen). It has really improved my cognitive function and stamina, and reduced crashes. The hyperbaric chamber means my HR stays the same as at rest and zero puffing.
Hasn’t worked so far for my son, though, who has CFS and POTS; I just have CFS.
What sort of exercise do you do in your hyperbaric chamber? I have a chamber but hadn’t thought of exercising in it.
Wow, I’ll have to get me one of those!
Please do some research and be careful about your son in the hyperbaric oxygen chamber. My daughter – with both POTS and ME/CFS – has chronically low blood CO2. For years the doctors ignored that sole out-of-range reading. But once we understood the relationship between blood CO2 and oxygen ABSORPTION, and how aerobic activity LOWERS blood CO2 a great deal finally became clear.
It has always seemed counter-intuitive to me, but low CO2 LIMITS the body’s ability to absorb oxygen, and continues to decrease (an inverse relationship) – as one is exposed to MORE oxygen (exercise, hyperbaric chamber, etc.) restricting actual BLOOD oxygen levels even more.
This finally explained why, before my daughter became obviously ill, she would become hypoxic during aerobic exercise, like running – the exact opposite of most athletes. But she did very well doing anaerobic exercise.
Thanks Hannah for your clear and detailed account. It is most helpfull.
“For instance, you know that family gathering you went to where you were fairly disciplined, and the next day you feel good, energetic even, so you think you got away with it?
Probably not. The app often showed my autonomic nervous system swinging into sympathetic dominance – the fight or flight response – the next day. That’s the first stage of a crash for most, and is characterized, oddly enough, by feeling hyper, and happy, with your internal dialogue yabbering like an excited 5-year-old coming home from school.”
I can follow you here. I do believe that stress hormones are far more then hormones making you feel stressed when you overdo it. They are IMO helping you to do more during the stressfull event then you could otherwise do and help you to recover better after it. But they come at a cost.
They dig deep into your reserves, so you need to leave plenty of opportunity to rest and recover after it. More importantly, if you have a high surge in combined adrenaline and dopamine to help you do things youd otherwise can’t do at all, then you are hit by the side effects of both too:
Adrenaline is the hormone that lets a frail old person think he can lift up a car in order to save his grandchild. Sometimes, that person even succeedes. It is a hormone that makes us blind for what are our logical and safe limitations, and giving us a sense of urgency that we HAVE to dig deep in our reserves.
Dopamine is the hormone that is strongly linked to addiction. It gives us a boost in our mental abilities and a strong surge in wellbeing. Both are things we can really use well as our diseasse criples both. As a stress hormone, it gives us that boost when we need it the most: when we exhaust ourselves to the max. So then it links a feeling of improved abilities and wellbeing together with adding adictive properties… AND overexerting way too much. So it hence rewards overdoing it way too much with feelings of increased ability and wellbeing and punishes not overdoing it with strong drops in dopamine and feeling of ability and wellbeing and creating a craving for more energy. Unfortunately, it lets us crave to overdo it in order to reach that feeling of wellbeing and being more energetic.
Having the prime adictive hormone, dopamine, come hand in hand at the same time with the hormone driving you to overdo it badly and being (time and again) blind for doing so… is a very dangerous cocktail for us. I believe that is a big part of “I new I better would not have exhausted me so much, but thought I had to and would be fine this time” time and again despite knowing better.
“During any period of experimentation, I’d keep the rest of my day as similar as possible, so that I would be able to tell it was my experiment that caused any crash and not something else.”
That is one of my main tools too: to try and create a stable baseline before making any change be it in activities or supplements. It makes it way more easy to assess how the change affects you and how much might be optimal.
That later, better knowing how much might be optimal, is key to me. Hannah clearly demonstrates how important it is to know how much exercise is optimal. Too much, and there is barely recovery due to pacing. But small recumbrent exercise were also part of her partial recovery. So it seems a well dosed bit helped her, and so it is for me.
The same counts with supplements that, when taking at “official, label” doses, just trash Issie and me very to very very bad. When taking ridiculous small amounts of them near anybody would sneeze at, some of those same supplements give us a slow but growing boost in abilities. It seems we are at a fragile and precarious balance and any small upset can disturb that.
We both believe that even many ME patients would laugh at us when we said we improve on such small doses of some OTC supplements. But why? Aren’t many ME patients equally sensitive to minute doses of chemicals that have no effect at all on healthy people? And aren’t ME people per definition extremely sensitive to ridiculous tiny amounts of physical and mental exertion?
So why would it be ridiculous to have to “pace” not only on physical and mental exertion, but just as well on supposedly harmless doses of supplements?
Comming back to trying and having a “boring and dull” routine, it helps to prevent being taken by yet another surprise upsetting us AND routine activities are known to be often far lower in energy cost to mainly the brain but even to the muscle better trained at those activities too. So resorting to a life full of routine helps not only to better assess the impact of small changes, it is also a form of mental and physical pacing all by itself.
Yes, I’m a very sociable person, and have always felt energised and happy with lots of people around. It’s why I find it so hard to find the discipline to pace social events properly, and as you say, why they crash me so much but leave that happy/buzzing effect immediately afterwards.
It was a very hard process, giving up my social life, despite being the first to go.
This makes me wonder if almost all ME patients could benefit from Ivabradine. If HR was artificially lowered with medication would it be possible to do more before risking PEM? Or is the HR just an indicator of some deeper overexertion?
There’s a lot of discussion about this in the heart rate pacing fb groups. Alot of people are on beta blockers, which does the same. But no one is quite sure if the drugs just mask the over exertion or whether they actually prevent the over exertion.
I’ve taken a beta blocker for many years simply because my body seems incapable of buffering the effects (acidic?) of adrenaline. It allows me to tolerate daily activities, but it probably adds to the cumulative effect of PEM, as you’ve noted.
The big take-away for me from your beautifully written communiqué is a HUGE jolt of motivation to finally get a grip on moment-to-moment pacing.
So, thanks from Massachusetts. I learned/learnt ? a lot!
“So, it was only with HRV monitoring that I truly learnt my limits.”
Thanks for stating once more that my watch giving HR and oxygen saturation values isn’t near enough. I need to get me a HRV tool it seems. I read about it before but thought I could do without the hassle.
To try and ilustrate how much we push ourselves through our limits, and how our feelings of being better and stronger might misguide us, let me tell this experience.
At worst (thanks to a truely awfull implementation of CBT/GET) I could walk safely less then 100 meters a day. That was including going from the bedroom to the bathroom, from the kitchen to the living room… and I could do so in chuncks of 10m maximum with a need to rest for an hour after that.
Now I can walk daily about 700 meters in one piece on top of other activities without too much and often any trouble. So that was a slow but rather significant improvement in abilities and qualities of life.
However, several important changes at first resulted in a strange mix of outcomes: I felt a lot more at rest in my mind but I actually temporarily *lost* physical strength and ability.
Once, the distance I could walk without trouble dropped by roughly 60% after a change I thought would help me. But at the same time, my brain was a lot calmer and I seemed to recover so much better and be more stable. Then it took quite a leap of faith to *carefully and slowly* try and see if what happend was a good thing or a bad thing. Yet, each time so far several months later I had roughly the same abilities as before but with a lot more calmness of mind and recovery potential and stability.
More then once, a well chosen change seemed to have caused my body and mind to “feel it was ready to drop some of the truely excessive amounts of stress hormones”. That IMO caused the big temporarily drops in ability but the improved calmness of mind So, it was only with HRV monitoring that I truly learnt my limits.
About two years I first could walk such distances, I sort of “forgot” to push my mind and body very hard to do nothing then plainly walk inside my house. I sort of “fell” through my muscles, meaning my knees/legs folded downwards as I had not the strength to cary my own weight. Then I realized how much I had been focussing and pusing adrenaline to do near every single activity of the day.
Now, a rough estimate would be that during my worst period of my life, where I could walk less then 100 meters a day in chuncks of 10 meter of essential “travels” through the house, very high doses of stress hormones pushed me to be able to do about !10! times more then I a
Oops. Sent too soon.
…very high doses of will power, focus and stress hormones pushed me (for day to day activities) to be able to do about !10! times more then I actually could do without doing so. Basically, without pushing that ridiculous hard I was utterly crippled.
Such may seem for even many ME patients not a serious estimation, but I know for sure the few worst days of my life, during a devastating crash, I had to crawl on hands and feet in chunks of a few meters a time to try and reach the phone to call for help.
I called my parents first. My brain wasn’t capable of trying to guess who to call best at that time and no one but my parents would have estimated it was me being in deep trouble when making but a few sounds ranging from moaning to sobbing.
I then had to rest for the 15 minutes before being able to crawl to the door to open it for them. I failed to remember they had a key.
When the doctor could come quite a bit later, I still managed to walk 5 meters forth and 5 meters back when he asked if I still could. It was in a very weird but fast moving frog like style. But I can assure you the amount of willpower and focus each and any single step took was greater then what was needed to walk an entire marathon when being young and healthy.
All of this to me demonstrates the extend to which we daily push ourselves deeply beyond our limits for even the most basic tasks. It is the exact opposite of what CBT/GET ideas tell us. We are not ill because we are afraid to move and are deconditioned because of it. We (in a significant part) KEEP being that ill because we push time and again deeper into our reserves on a daily basis then most if any of those phychologists / theraphists / “researchers” ever did in there entire life. And they (well, many praticing the noxious version of CBT for ME) try to twist our mind that we are slackers and need to push harder. The likely outcome? Disaster!
somehow, “So, it was only with HRV monitoring that I truly learnt my limits.” was copied into the text over the middle of the original comment I made here.
That can be confusing as I mentioned I didn’t do HRV montioring yet. I guess I accidentially hit a “paste” keyboard combo.
Again and again I observe how adrenaline/pushing makes me “artificially” active i.e. beyond tolerance levels, and also how an overactive stress system consumes a lot of energy. So I think I could have a similar experience like you if my life circumstances allowed for my stress system to really shut down. What you write makes lots of sense to me.
Hi Hannah – thank you so much for a very useful article. I’ve been (mis-)managing this condition for 25 years plus and never seem to get to grips with activity levels and reducing PEM. The concept of rolling PEM makes complete sense. My HR seems very volatile, going up at the slightest provocation but returning to resting relatively easily. I often feel rubbish as if it’s full on PEM but my HR will be back to resting (which my Fitbit claims is 59).
Did you ever have a 2 day CPET done? I’m not aware of anywhere in the UK that offers them and would probably be very wary anyway for obvious reasons.
So pleased for you that you are managing this successfully – and congratulations on arrival of your baby!
No, I didn’t get a CPET done. Also not sure if anyone will do them in the UK, and given Workwell’s new findings, that most people’s AT is actually 15bpm above resting heart rate, this perhaps explains why I needed to monitor my HRV as well, as that would make my AT 78bpm! Yours will also be super low.
However, I think my experience probably shows that just minimising the amount of time spent above your AT will have a positive effect, so you just have to do what you can do!
Hi Hannah, what is AT!??! Thanks
I’m wondering if Hannah’s balance issues flare up during crashes, or if anyone else experiences dizziness or imbalance during crashes. Also, I have noticed a connection between water retention and extreme episodes of fatigue, including PEM, and an inability to tolerate foods with sodium in even small amounts. (I have been on mainly plain vegetables and nuts, but recently adding a low-sodium plain grilled fish causes flare-ups.) As CFS can have many causes as well as exacerbate underlying issues, I’ve been on a quest to get to the bottom of the things I can control. I greatly appreciate this article, and I do follow the pacing which has been very helpful (but needs tweaking), but the hardest thing to control is the foggy-brained sensation as if brain tissue is retaining fluids, which is always paired with puffy eyes and dizziness, I’d love to hear from others if you have similar experiences. Thank you!
@Lac, yes, same. Fish is a high histamine food. If it isn’t really fresh or flash frozen, it can cause MCAS issues. That sounds like what may be happening with you. MCAS can also cause edema and dizziness. Nuts are a “no go” for me too, as are seeds. Some vegetables also cause more inflammation. Something to consider.
Issie, Thank you so much for responding. I need to do some research on MCAS, though, since I’m not clear on it. Is there a website you use regularly for food recommendations? I’m running out of things I can eat due to this sodium sensitivity and the need for a protein source that’s low enough in sodium for me to handle (the Mahi fish and salmon only had 50 mg per serving). I miss being able to eat a varied diet, and an occasional opportunity to eat at a special event.
@LAC, There are some good threads on the Health Rising forum and Dejurgen and I have both written on these blogs about MCAS. One thread on the forum that was especially helpful to me is by Bayard. He tuned me in to resetting the histamine receptors to work more appropriately, and not blocking them with antihistamines. That has been a hard to do, but good move for me. I have gotten much improvement with doing that. There are many sites on the internet that talk about high histamine foods. You may also pay attention to high lectin foods. And Dejurgen and I, both, have noticed that foods that are nightshades and also high oxylate foods, bother us. I think a key thing for us is our diet. And getting the gut in better order.
LAC, my biggest symptom-producer of brainfog and tachycardia has been histamine. If I keep it very low (and it is in SOOOOOO many foods, and is produced even just by eating) then I can be fairly normal. It’s a serious pain in the posterior, managing it, but gets me a bit of a life. Histamine is related to producing stomach acid and in healing the gut – which suggests plenty. I stay off the histamine, take Betaine with meals, avoid biocides in my food…
Oh, and I always know if I’ve had too much histamine, quite apart from the brainfog, because my face tells me clearly. I can look like me, or I can look like a hideous, old, puffy me.
LondonPots, Thank you so much for sharing this information. I never heard about histamine-inducing foods but will look into it. I seem to find out about all the things I shouldn’t be eating, but the challenge is finding healthy, natural foods that I can eat. As for the puffy face paired with brain fog, maybe I’ve gotten on the wrong path to simply look at sodium. I’ve long suspected a problem with kidney function yet tests are normal. On the other hand, being a life-long allergy sufferer might indicate a histamine issue.
Yes LAC, I have had problems with histamine – puffy eyes, balance issues, dizziness. I’m intolerant to a lot of food but I have improved – as I calmed my sympathetic nervous system and slept better – I could tolerate more food. I also have a problem with salt – it disturbs the rhythm of my heart.
Wow, Tracy….this is all very affirming. Thank you! It gives me a new angle to consider that health professionals couldn’t address. My cardiologist said the arrhythmia was caused by dehydration even though I drink a lot of water, and the nutritionist said I was drinking too much water. I hadn’t even thought of histamine and only understand it in the context of my allergies. Time for me to explore a new avenue.
Hi LAC, I have had so many issues that are off the radar of most health professionals, so I’ve had to go the DIY route…
I would have a problem with becoming dehydrated due to drinking coffee and by eating too much fructose. I think the fructose has a similar affect as alcohol. I used to know I’d eaten too much because I’d pee huge amounts.
I’ve had to experiment over the years – most people just think I’ve lost the plot – but we don’t want to mind what they have to say, do we?! In the beginning I generally adjusted my diet because I had some sort of nasty reaction – in other words I had to. When I was completely wired, barely sleeping etc I became intolerant to almost all food and nothing gave me energy apart from chocolate – which catapulted me into sympathetic mode, raised my blood pressure and heart rate and gave me a headache. I also had difficulty changing the focus of my eyes and no one believed anything I said. I had overrun my energy reserves so far, that I had to put severe limitations on thinking because I didn’t seem to have enough energy to cover all the jobs my body/brain/mind needed to accomplish.
Anyway to cut a long story short what turned this dire situation around was a disciplined regime, I mentioned above. Calming my sympathetic response, getting better sleep, a good routine, resting etc., every day.
I had in mind a sort of modified, Tracey fashion, Mediterranean/anti inflammatory diet. I really wanted to be able to eat olive oil but it made my throat swell up. However, as soon as I started my revised lifestyle and I slept better, then I could tolerate olive oil. That was two years ago now and I’ve massively improved my level of functioning. But I’m still experimenting. I’ve found that I do need some carbs because I just can’t seem to get energy otherwise.
Also in connection with the water drinking, Cort did an interesting blog on oral hydration – if you drink too much water then you can flush out all the different salts your body needs. People had different experiences. Maybe you could take a look?
I do get a bit of vertigo/balance issues sometimes, but I had some inner ear damage from the labyrinthitis, so that’s probably the cause of mine. It’s hard to differentiate what’s ME and what’s other stuff sometimes!
Interesting! I’d like to know the cheapest ‘works-well-enough’ equipment for this – any ideas? I don’t want to pay £100s for something only an Olympic athlete needs…
My heartrate is all over the place because of my POTS – but that’s not the same as HRV, of course. If I stay well clear of histamine and stay hydrated my bpm is (relatively) normal. But half an avocado can send it right back up. I think this would be useful – I have an allotment to manage and spring is very near.
Thank you so much, Hannah, for going into such detail. I found this webpage to have useful explanations: https://www.whoop.com/thelocker/heart-rate-variability-hrv/
The heart rate pacing groups on facebook all have a list in their files section, of the popular trackers for doing heart rate pacing with, and the pros and cons. However, none of them are designed for us in mind, so they all have loads of functions we won’t use and default settings that we would turn off e.g. reminders to move etc.
Thank you Hannah I agree with everything you wrote. My first round with MECFS was about 30 years ago and I had to learn by myself that the best thing I could do was lie down and rest. Your advice would have been so good back then. If your resting and heart rate monitoring advice was the standard advice people got many people would be much better off.
Agreed. I might still be well enough for work and life if the docs had told me about this when I was first diagnosed. Such a shame. But as GET gradually gets the boot, hopefully newbies will start getting proper advice and treatment.
@ Issie, I have the same problem. My HR is always above my threshold! Laying down brings the rate down a bit–but as soon as I sit up, it skyrockets. I can’t conduct my life forever flat. I have struggled and struggled with pacing and maybe that’s why it doesn’t seem to work so well for me.
Now on a completely different subject–here is a study that getting a Covid vaccine may help Covid long hauler symptoms;
https://www.medpagetoday.com/special-reports/exclusives/91476?xid=nl_medpageexclusive_2021-03-05&eun=g1240599d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=MPTExclusives_030521&utm_term=NL_Gen_Int_Medpage_Exclusives_Active
Doesn’t work for everybody, but begs the question of reactivated viruses or fragments of past infections being implicated in ME/CFS, and if we could totally eradicate them, we may have a treatment.
I got my first Pfizer shot March 1st and got a VERY sore arm. It is still mildly sore today, 5 days later! Weirdly, I did notice a small uptick in energy. It will be interesting to see what will happen with the second vaccine.
Thanks Hannah,
Good to hear of your progress! Did you happen to come across any HRV monitors that don’t require wireless or an app? (I could plug something into my computer, but can’t be around wireless signal). Thanks 🙂
Alas, I haven’t, but then it’s not something I’ve looked for. For continuous hr monitoring the device has to be straped to your body to read your heart rate, so most involve a bluetooth connection at the very least. Maybe you could look into medical grade equipment instead?
For morning HRV the readings only take 5 minutes, so don’t know if you could tolerate WiFi for that long?
Probably worth seeking out others with the same sensitivity to see if they have a solution. Sorry I couldn’t be more help x
You’re very organised Hannah. I’m fairly methodical and as I realised my whole system was completely out of sync, I decided I had to set up a routine – getting up at the same time etc., to reset my circadian rhythm. I also focused on attempting to live on sustainable energy – trying to rest and slept better and so on. I did initially feel less wired but it did take a long time before I started to feel a little trickle of real energy.
I find that mental energy is one of my main issues. In particular anything emotional wipes me out. There’s usually a delay in the consequences but I can always track back to the culprit. I am sorting through issues and resolving them, if I’m able to.
I find your account very readable and encouraging and like others who have improved, it’s through doing less – not more ?
Thank you!
i got mail from workwell foundation where they say TO NOT TAKE FORMULAS to come to your AT, look it up, new webinar, also cpet and rhr usefull if i could understand it well
to ill to read it all, watch it for now
also people in 25% me group pace verry well but do not get better, it is not that simple
Also, i had looked a a fitbit review where many people said they are athletes, but the hrv on fitbit was reading 20, and they thought it should be higher. They did not agree / trust the numbers. Most wanted to buy domething called Polar for hrv.
Could not find those reviews, but found a new set that says that the value the fitbit gives is not hrv % but has different units. (Also some reviews say fitbit’s hrv values, besides different units, use a formula that is giving people the average over time, instead of an immediate reading).
https://community.fitbit.com/t5/Inspire-Inspire-HR/INSPIRE-HR-Heart-rate-variability/td-p/4495752
Sunnie, I have an older Fitbit and mine shows readings at the moment of my heart rate. I calculated it with the numbers Hannah gave and that is how mine is showing, with those calculations. If you enter your height, weight and age and activity level into your fitbit app, that is how mine calculated my ratios. It also tells me immediately if I’m in resting range, fat burning range or too high range. Shows right on face of my watch.
I had a polar watch before this one. It had a chest strap and although it tells more and may be more accurate…..it was also more complicated and hard to figure out. I need simple.
Yeah, the calculation I used is now out of date. That’s why we’ve linked to the new guidance at the bottom of the article.
Even 4 years ago, those in the pacing groups always cautioned that is was only an estimation, and that people who had their CPET test, were told their AT was much lower.
Hi Cort, thanks for the post on Hannah Clark’s HR-monitored pacing with exercise. Workwell appropriately presents this account as a single-patient report. Nonetheless, my and many ME/CFS sufferers’ understanding of the institutionally caused dangers apparent in the PACE trials and the ease with which therapies are promoted without clinical research evidence do not sit comfortably with this article’s approach. “How I learned to stop worrying and love the bomb” did spring to mind. I’m playing catch-up all of this and am likely out of date. As I understand it from a 2010 paper the Workwell Foundation’s evidentiary justification for use of exercise is limited to what it describes as a “conceptual model” that is in turn reliant on a physical therapy theory of stress not specific to ME. If this is still the case it concerns me that Workwell is promoting this approach. As Workwell concede, “the health-related quality of life of people with CFS/ME is only weakly correlated with exercise capacity measurements.” https://academic.oup.com/ptj/article/90/4/602/2888236
It does seem to me that, as with PACE, there is the whiff of partiality and indeed undeclared interests in seeking to benefit the juggernaut of exercise therapy at the possible expense of patients and better-directed research. I know this is the age-old debate in these forums, but I really am concerned about the way this report is presented by Workwell.
Hi Andrew M Watts,
I saw you addressed your comment to Cort, but I thought I’d chime in, too : )
Workwell’s methodology is nothing at all like GET used in the PACE trial and in the UK, generally. In fact, here’s a letter Workwell wrote for healthcare providers: “Opposition to Graded Exercise Therapy for ME/CFS” – https://workwellfoundation.org/wp-content/uploads/2019/07/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf
Their “Conceptual Management…” paper describes their approach – which is focussed on avoiding aerobic energy (in ME, it’s broken) and instead using anaerobic energy – in very, very small, gentle, customized for each person- increments.
It’s tailored for ME patients. Also, in all but the last phase (and I believe few ME patients reach that), the exercises really consist of gentle stretching/weight bearing, while lying down. You can start with sessions at about 20 seconds, if necessary, followed by 3-6 times rest – every other day at most.
It’s best to work with a PT- but they have to be willing to read at least that “Conceptual Management…” paper first — because ME patients’ needs will turn their PT training on its head. That said, many PTs really do “get it” after they’ve been educated on ME.
If you are interested, Workwell has several great videos on their website that explain their approach. And they are the group that has objectively proven the existence of PEM in ME patients through their 2-day CPETs.
Hi Waiting, thanks for your reply. Yes, I’ve read a variation of the Workwell refutation of GET that you included the link to, and read through the ‘conceptual management’ approach. I agree that of course Workwell is not promulgating the PACE agenda.
My concern arises from two issues: the dearth of controlled trial research support for the foundation’s conceptual management approach; and Workwell maintaining in this promotional article that its application of physical therapy within a pacing program is a contributing reason for Hannah Clark’s improvement — that it reduces PEM.
By Hannah’s account avoidance of over-exertion has been pivotal in preventing her extreme PEM. However, the benefit of physical therapy to PEM avoidance remains unsubstantiated. In view of the paucity of evidence it seems extremely irresponsible to revisit the damaging paradigm apparent in the PACE trials of promoting physical therapy as a response to ME when its adoption potentially discourages directed medical research funding and fosters persisting patient stigmatization.
Similar to Hannah, I have spent decades over-exerting myself and suffering PEM. While HR monitoring may assist me to avoid this, what has certainly helped is non-exertion. Please correct me if I am wrong, but as I understand it, while the conceptual management approach might help sufferers of ME, nothing in Hannah’s account or in Workwell’s demonstrates to any reliable degree that it does.
Hi Andrew M Watts,
I understand your caution on this subject. Every ME patient is wary of exercise – and for very good reason, with lots of painful personal experience to account for that wariness.
And you are absolutely right – there is a dearth of research in this area. There is no randomized clinical trial (RCT) – and that’s because of a serious lack of funding, just like in every other area of ME research. And even apart from that gold standard of an RCT, it’s exceedingly difficult to get Workwell’s data and findings into the literature.
However, Workwell’s recommendations are based on 30 years of clinical experience. “Do no harm” is always their guiding principle. This group is singularly dedicated to helping ME patients – and has been for decades. Their focus on the use of anaerobic energy (as opposed to aerobic energy) is based on their decades of research and clinical experience — to achieve a form of “safe exercise” — for those who are able to (some are able to; some are not able to).
I recommend you read Workwell Foundations’ Todd Davenport (Associate Professor and Program Director of the Department of Physical Therapy at the University of the Pacific) letter re: the GETSET study. An excerpt from his letter which may address some of your concerns: “Some people might need more movement, in the form of an exercise program, while some people might need less movement, in the form of a pacing program.” (https://workwellfoundation.org/wp-content/uploads/2019/07/GETSET-Trial-in-MECFS-L1.pdf).
He goes on to say: “This abnormal physiological response to exertion is so distinctive that many ME/CFS researchers, including the National Institute of Health’s Intramural Study [10] and Cornell’s Collaborative ME/CFS Research Center [11], use exercise, not as a therapeutic intervention, but as a way to exacerbate the illness so that it can be studied.” Exercise is deliberately used in provocation studies to evoke PEM so it can be studied.
This is why I mentioned in my previous comment that if you were to decide to try an anaerobic exercise program, working with a PT — an ME-literate PT, mind you, is essential. Also, I refer to my previous description of what that exercise could look like – 20 seconds of gentle movement/stretching/weight bearing – followed by 3-6 the length of time in rest – and even that not every day. Healthy people would likely not even recognize it as “exercise”.
Workwell also has journalist David Tuller’s open letter to the British Journal of Sports Medicine on their website – that contains a letter from Workwell. An excerpt: “The goal of therapeutic exercise for ME/CFS patients should be to increase activity levels while reducing fatigue. We believe this is best achieved by training the anaerobic energy system, i.e., improving the body’s tolerance for and ability to clear lactate while increasing ATP in resting muscle [19].” (http://www.virology.ws/2018/02/05/trial-by-error-letter-to-british-journal-of-sports-medicine-from-cpet-experts/).
I hope this is helpful to you.
Hello again Waiting,
Thanks for your response. Like many other long-term sufferers I am not cautious about exercise, but rather about its unsubstantiated promotion as a treatment that benefits people with ME/CFS. As you concede, and from the literature I’ve been able to review, there is no evidentiary support for this. The one large controlled study I have identified that directly considers the efficacy of pacing and HRV cannot confirm any benefit: https://doi.org/10.4236/ape.2020.102013
The assumptions of psychosomatic causes of physical deconditioning underlying the PACE trials established the unsubstantiated expectation that exercise would improve energy levels in ME patients. Studies have since demonstrated that these assumptions are not merely baseless, but incorrect (see Cort’s article in these pages: https://www.healthrising.org/blog/2020/11/16/get-graded-exercise-therapy-chronic-fatigue-syndrome/ ).
As you explain, Workwell’s model is conjecture. It maintains that for ME/CFS patients, exercise “should increase activity levels while reducing fatigue…[by] improving the body’s tolerance for and ability to clear lactate while increasing ATP in resting muscle” That “should” is doing some extraordinarily heavy lifting. The research I cited above found no evidence that this occurs.
There is a proper place for conjecture. The consequence of Workwell’s is the continuation of unwarranted and unhelpful emphasis on exercise which, as we have seen with the UK experience, perpetuates damaging conceptions that ME is psychosomatic.
You refer to Prof. Davenport’s comments that differential levels of exercise or movement are applicable depending upon the individual. This blends the self-evident with surmise which, like the promotion of physical therapy in general, at best tells us what we already know, and at worst perpetuates the insupportable notion of reparative therapy.
I think I must not have explained all this properly.
I’m not a patient of Workwell, and haven’t ever been in contact with them. I just heard about the protocol for pacing via facebook and tried to follow it. There’s a lot more to their protocol that other do in terms of crunching numbers, trends and analysis etc, but I didn’t have the head for that at the time, so I just did what I could cope with by myself.
I have hypermobility, and so have to do some movement else things seize up and lots of muscle and joint pain, so with ME as well, I’d been stuck between a rock and a hard place of having to move, and crashing when I do.
The protocol and HRV work I’ve done allowed me to learn those limits whilst doing gentle stretches and very gentle strength and conditioning exercises (no weights, all recumbent) in order to stregthen my core and help the hypermobility side of things.
Whilst doing this, I happened to notice my hr was less reactive, presumably because I’d eliminated my rolling PEM.
It was only then that I started to experiment and do more.
I’m sure I have a ceiling as to how much I will ever be able to do, but I don’t think I got to that ceiling, so I’m looking forward to when I can get back into it using the new guidance from workwell.
I learned a stretching/core strengthening routine in a class before ME/CFS that I’ve used for decades, all of which is done in various positions while recumbent on a mat. I also do some Tai-Chi.
After reading Hannah’s admonitions about overdoing it, I’ll be more careful. I’m sure I suffer some PEM from this, though my body feels more toned and I move more confidently. If I don’t do these things and simply rest all the time, I run the risk of lower-back spasms which can be devastating for me.
I know I’m fortunate to be able to do all this. We all have to do what we learn is best within our own limits.
You mention resting every two minutes when in the exertion zone. For how long? Or did you mean for two minutes? Thanks!
Hi, I rested until my hr got back to within 5bpm of my resting heart rate, but making sure it was at least 10 minutes. After the session (no more then 30 mins including the rest breaks), I made sure I rested for at least half an hour b4 doing anything else e.g. tv or reading.
I only ever did one stretching session when I got up, and one strength and conditioning session in the afternoon. The rest of the day was alternated between resting and sitting outside, watching tv or reading.
I also had to prep my lunch and breakfast and any snacks (just sandwiches, cereal or fruit) but hubby cooks my supper.
Once a week I my mum and step-dad would visit for about 30 mins. I only did the stretches that day.
I did start building in the walks when my hr started being less reactive. On those days, I just did the morning stretches as well.
More detail then you asked for, but hey!
@Hannah (or other who know):
How do I know a chest strap CAN do HRV on top of just measuring HR? I haven’t been able to find one that mentions HRV or Heart Rate Variability on its list of features yet.
See for example https://www.polar.com/us-en/products/accessories/H9_heart_rate_sensor
Best info I found on https://www.polar.com/us-en/products/compare?product1=98002 is:
“HR measurement method ECG”
=> Does that mean that all devices that are compatible with your app that do ECG measurments will give you HRV values???
Thanks in advance.
Apologies, devices are not my area of expertise, but all chest straps do pretty much the same thing I think, so instead look at the app or device you will want to use it inconjuction with, and see what chest straps are compatible, and go from there according to reviews etc.
@dejurgen
the definitions of hrv also vary, plus some use averages in their calculations, others ( i do not tecall who/what) seem to ‘correlate’ a different parameter or calculation to hrv.
some, hrv is variation in time between beats, others hrv seems to be the % ability of heart to vary ( up or down) in response to need. so low hrv might mean narrow heart beat range to them?
Many thanks to Tracey Ann, LondonPOTS and Hannah for your insights and ideas. As for histamine-reactive foods, I’ve seen many contradictions online (e.g. Eat avocados/avoid avocados, eat citrus/avoid citrus). As our bodies are our DIY laboratories when doctors don’t have the answers, I’m at the point where my diet is so restrictive and unvaried due to the things I can’t eat (anything with sodium, anything processed, anything that triggers migraines, etc.) that I feel a need to step back and look at the big picture. I simply can’t delete anything more from my diet without becoming deficient or weakened further. (It’s always easier to add than subtract, and elimination diets have subtracted most everything). The big picture seems to be that all of us have an autonomic nervous system that is not functioning properly and is causing all these sensitivities, likely due to chemicals misfiring or not firing. I agree that proper sleep is key, as is exercise, and although my CFS episodes have me starting each day with a rather low pulse, doing my slowest walk possible still throws my pulse 30 points over my recommended maximum, but doing the exercise despite recommended maximums still works better for me for sleeping well, and as one size does not fit all, in my case it seems that the actual pulse numbers are less relevant to regaining energy than simply increasing the length of my movement time at what is a much slower, gentler pace than would be normal for me. It really helps with the shortness of breath, too.
Yes, I agree LAC, we’re all individuals and we’ll all be reacting to different things. I think it’s about weighing up the risks/benefits. What I try and do is eat as nutritously as I can, without having too bad a reaction. There was a lovely woman called Yasmina (the low histamine chef) who, having tried to eradicate histamine from her diet, then realised that her body made histamine anyway, so she started incorporating a wider range of food again.
I just do my own thing. For years I watched many health summits by the functional medicine crowd. So I loosely base my ideas on theirs. However I modify things to suit my own system. I do take supplements too.
When I was so intolerant to so many foods, I did become fairly thin, pale, drawn and was barely ticking over. So I thought I just had to do something. I started experimenting with different food, which I still had issues with and landed on the chocolate. Maybe not the best but it sort of jump started me out of the shut down mode – way too much but was possibly better than the scrawny individual I had become. I’ve decided that nothing is going to be perfect and I cobble together whatever seems to work.
Thanks, Tracey Anne (I finally spelled your name right, yay). I agree with you (agreeing with me). Sometimes it’s too alluring to get into the details of fixing things, but your discovery about chocolate was essential. For decades I suffered from frequent migraines but discovered that foods like chocolate and ripe bananas and msg were triggers. Thanks to paying attention to reactions, I compiled a list of food triggers, and when the internet finally became widespread, I found a list of 20 typical migraine triggers that matched my discoveries. Avoiding those triggers significantly reduced migraines, leaving the biggest triggers to oncoming hurricanes and, well, hormones. I thinkwhen we succeed in feeling better with food discoveries, it creates a certain focus on foods as cures. While I do see what the American diet has done to people’s health, I must remind myself of something more simple about our bodies and health. That is, the human body evolved on foods that haven’t been altered (whole Foods), that we need a good amount of sleep, and perhaps most important in the evolution of all animals is that the body was meant to move. With CFS, I know I need to add more periods of rest, and I know I need to move slower—two adaptations I’ve had to make—but following some of the CFS exercise and heart rate guidelines had caused me to move less, which prolonged my symptoms. While I do read and appreciate everything I find on healthrising, sometimes I just have to step back and remind myself of the simplicity of the big 3: whole foods, deep sleep, and that very important evolutionary factor….that our bodies were meant to move.
Have there been any properly-controlled studies of HRV as a pacing aid? I undertook a small scale study of HRV behaviour in 16 sufferers and 18 healthy volunteers. We looked at the behaviour of HRV (measured as respiratory sinus arrhythmia – the definition used in the research field) in response to a mild exercise challenge. We found no significant difference between PwME and healthy volunteers, so I’m sceptical.
Hello Mark, This study from last year might be relevant — it involved ninety participants and from my understanding used a measurable comparison of lactic acidosis to test whether HRV pacing formulae were effective:
https://www.scirp.org/journal/paperinformation.aspx?paperid=100333
As with your assessment, it determined that the pacing approaches were not effective.
Hi Andrew, I can’t find any mention of HRV in this study. It seems they were trying to work out whether the (now outdated?) formula accurately predicted a pwME’s real anaerobic threshold, and it didn’t. At least that’s what I took from the abstract. I’ve heard through a few channels (including the Workwell Foundations factsheet) that in lieu of a CPET, considering your AT to be ~15bpm above your resting heart rate might be a safer bet than the (220 – age x 0.6) formula.
Hi Mark,
This paper involved 90 participants and might be relevant:
https://www.scirp.org/journal/paperinformation.aspx?paperid=100333
It also found no benefit.
You have inspired me to give this a try – thank you!
Hi Cort,
My apologies — I accidentally submitted two similar versions of my short response email to Mark Harper in this post regarding a paper on HRV acidosis and pacing formulae (10th March). They refer to the same paper — you may want to delete one to avoid repetition, although it matters little in the greater scheme of things.
Amazing article and great explanation. I am a bit confused as to whether any chest strap can be used or if the chest strap has to be able to monitor LF, HF and LF&HF as some only monitor on an average RR rate. Can any strap be used and then the HRVT4training app converts it to the frequencies or does the strap need to have this capability?
LAC – I would suggest you look at a way of approaching your eating dilemma. The recent version is GAPS and it is based on the the SCD developed previously. I have written about this on Cort’s request but it is not published yet. You need to read the book (not reviews because I find the people from establishment clearly have not looked at the actual source). Additionally I would encourage you to stop guessing and get testing on food allergies for you. I had to eliminate 35 suspicious foods to clear all the symptoms…who would do that based on guessing? This is a low and slow approach focusing on intestinal health and building from the individual’s response to a balanced diet of a few foods and building to a diet that your body can digest that includes as many foods as possible. Also, I really am awed by Issie’s knowledge so I am hesitant to say this but….Dr. Bateman is finding 100% of their ME/CFS patients have hypotension in some form. The first defense for POTS is a healthy diet which includes salt….which is essential to stay hydrated. I refer you to Dr. Peter Rowe’s work…which in addition to addressing the need for salt intake, also acknowledges the more recent research on coffee which shows that the old 1928 study was incorrect and coffee does not dehydrate all people. Dr. Rowe does not take coffee away from folks who have problems with hydration as it is a principal form of their hydration. Hannah, thanks for writing this article. You have put together some really critical and recent information. You have given me emotional support to take the last step to use HRV. Stay strong on talking about Workwell Foundation…if we could get 2 day CPET tests universally available, ME/CFS would get diagnosed. Dr. Klimas also uses this methodology.
@Janet,
There are different subsets of POTS. Some of us have higher blood pressure (and variable blood pressures) and we still have orthostatic drops with our POTS, which may drop us to a more normal range. But POTS isn’t diagnosed from blood pressures but heart rates. Its good to know what our pressures are however, as that helps to place the subsets. The type I have is called HyperPOTS with too high norepinephrine with standing. (Above 600 is the criteria, I was way above that .) If we had stopped there with my work up and not done very through testing, we may had not discovered that I also have extremely low renin and aldosterone levels. The nephrologist said with my levels together being so low, normally they would do high diuretics. But with my other presentations,, diuretics was not to even to be considered, with also finding low blood volumes and blood pooling and high blood pressures, he said salt was not something I could do. Also having been in Stage 3 of chronic kidney disease, salt not so good for that. (I reversed that with diet, yes – it can be done. Became a vegan for 3 1/2 years . Now stage 1 and considered normal for my age. But I still have to be careful with my kidneys.) So salt is NOT for all patients. I’m not the only one this is all wrong for. So one can’t say that all POTS people should take massive doses of salt and damage other things that may already not be working so well. Thats why we won’t have a one pill fixes all for the masses. This is an individual journey. We are all different. We need to know “well” our WHYs and then we can search for our bandaids. There are other ways less corrosive and damaging then forcing the kidneys to hold onto salt to retain water to help hydrate. A little may be good, but massive amounts…..not so good. If this is of interest, I used to write on DINET forum, years ago, when POTS was in its discovery. I didn’t feel salt was good for me and some others either. I did a research paper on that and the kidneys and salt. It does go against what most doctors try to have their POTS patients do. But we are not all hypotensive. And we don’t all need to constrict our veins and cause ourselves to have even higher blood pressures and more kidney damage. And also hinder blood flow even more when there could be too thick blood and too constricted blood vessels. We need our blood to move and carry oxygen and blood to the most vital organs and upwards to our heart and brain. Too constricted veins doesn’t help this movement with sludgy blood. Again another thing needing to be checked. Some of us have APS or issues with Factor 8 and Collagen Factor. We have to get our WHYs. What works for me, may not work for others. But the type POTS I have is one of the hardest to treat because there is also very variable blood pressures. You can’t treat the highs for the lows and vice-versa. And we need norepinephrine that causes our heart to pump to move blood and oxygen. That can also be helped by moving the legs, by fidgeting.
WHYS first and then our “purple bandaids” ?
Issie has a series of comorbidities. That makes her case complex. Her case of POTS is a far less common one of hyperPOTS. That needs a different approach. Observing how standard approach fired back on her time and again made her very well aware that there wont be a one size fits all solution for neither ME nor MCAS nor POTS.
“a healthy diet which includes salt….which is essential to stay hydrated.”
Cort made a good blog on oral rehydration https://www.healthrising.org/blog/2020/09/15/saline-ors-oral-rehydration-pots-chronic-fatigue-syndrome/
“The authors concluded that ORS is an inexpensive, safe, and “effective alternative to IV saline for rapid resolution of symptoms associated with orthostatic intolerance.””
AND
“Several other commercial ORS solutions and recipes use sucrose – which is not effective. Salt water is not very effective at improving orthostatic intolerance and drinking large amounts of it can be dangerous.”
This strongly points to just increasing (common sodium) salt in diet may not be an ideal or even good solution *if the balance with glucose and potasium is not considered per each intake*.
Kind regards,
dejurgen
Reply to Janet and dejurgen and Cory article —
Thank you SO much for the postings on atypical POTS or OI. And ORS.
Quick q about ORS. Any opinion on DripDrop brand ORS? It gets incredibly high Amazon reviews … but no mention of WHO formula, etc.
I’m JUST catching up with this—didn’t even know the acronym ORS. But for years have kept mini bottles of unflavored Pedialyte (approx $100 for box of 100 mini bottles, only on Amazon as far as i know) near or on me for emergency use. Hadn’t really thought of regularly taking preventatively. (duh!)
I have noted thru many trips to ER —or post-operative— that IV rehydration and oxygen help). But getting these paid for at home is hopeless. (Anyone? Experience with Medicare on this?)
The ODD thing is that pedialyte helps even though I have orthostatic HYPERtension
(And high heart rate) after very little time spent vertical, or sitting, any mental or physical exertion, vertical or lying down.
My apparently atypical response is this (which I don’t see this described many places):
I don’t faint (apparently typical with low BP). Instead, a
complete muscle collapse, beginning with neck (my “early warning sign,”) then jaw, eye muscles and proceeding to whole body. Trouble getting enough breath and collapsed jaw muscles render me unable to form words;(instant spike in brain fog contributes). But im conscious snd aware.
In early years, I’d slide (involuntarily) onto the floor (anywhere I was; many mortifying and inconvenient (to say least) experiences; many unnecessary, involuntary trips to ER.
Then began using wheelchair (motorized AND reclining —a big help. It’s an EZ-Lite. Rarely found gestures. But $3000+), observing early warning signs (which daughter snd close friends can sometimes better detect), and simply Not Doing/Going/Standing/Talking/Living etc.) Only total horizontality (plus quiet/dark, weighted blanket, pedialyte etc) can (sometimes) arrest or modify attack.
. Is this familiar to anyone else?
This is how my fatigue “flares” usually begin, leading to hours, days, etc of immobility.
(Muscle-collapse attacks can also be brought on by eating (anything), moving bowels or an episode or extended span (5-45 mins) of spine or bladder pain.
Sometimes lately, the collapse is quickly followed by brief deep sleep. (Wreaks havoc with sleep schedule)
I did contact the Bateman center some time ago about the O Hypertension and heard back that they certainly know about it, but that it’s not really bern studied yet snd no sign when they will get to it.
I’d appreciate any replies shedding light on it—and my collapse syndrome. Any studies ARE being done? Personal experience?
I’m so grateful for your this threats snd reminder that we all have different cases. (Much to annoyance of Big Science, Big Meficine snd my doctors. )
Final q: Since I still (8 years) haven’t had any adequate testing (almost none), I don’t have much diagnostic info; will be exploring things mentioned, like norepinephrine etc.
>>>What is the best discipline of a doctor to go to for tests? (Besides of. Purse, someone with any intellectual/professional curiosity, and empathy. THSNK YOU
@Jolie, it sounds that a good neurologist may be the one to see. I also suggest Dr. GOODMAN, he is the beat neurologist I have seen. And if we are talking about POTS, he is your guy. The dropping things, I’m not sure. I have weakness too, but not to the degree you have. I seldom have fainted with my POTS either and I do have more Hypertension than not. Its a different subset.
With my subset, MCAS seems to go along with it, more than not. That could explain a few things for you. That is a hard one to DX, but now they are going a lot with symptoms as I mentioned above. If you go to Health Rising Forum, Dejurgen and I have written a lot about it. Also Bayard started some really good threads that lead me down another path of how to treat MCAS. It is NOT what most people do for it, completely opposite. But this approach has been a benefit to me of not blocking histamine receptors, but getting them to reset. Diet is important here. Exercise, straining (bowel movement) can make MCAS worse. (This can also be connected to Vagal nerve issues. And why neurologist would be important to track down whats happening.) Dr. GOODMAN is aware of all of this. He is good for DX and tracing down complicated case and finding WHYs.
I hope you get more answers.
@Jolie, the more I think about you, I felt need to post this to you. First off, I’m not a doctor. I can’t DX you or make suggestions to you. I only can talk about what has worked for me. But I had a friend on the POTS forum and she did similar things. She would start shaking and then sort of drop. She thought the whole time it was POTS. But it was more than that. She finally got her DX and it fit her. But it can be other things too. I can think of another neurological condition that it could be also. I don’t know if this fits, but it popped into my mind. I know how desperate we get when we don’t have our WHYs.
https://www.ninds.nih.gov/Disorders/All-Disorders/Stiff-Person-Syndrome-Information-Page#:~:text=Definition,can%20set%20off%20muscle%20spasms.
@Jolie Solomon:
https://pedialyte.com/products/classic/mixed-fruit contains sodium, potassium and dextrose which is glucose. The other sweetner sucralose is bound to be in low quantity as it’s hundreds of times more sweet then sugar.
The contents resembles the content of the ORS pictured in the second picture of Corts ORS blog, +- some other stuff. The combo sodium, potasium and glucose but not sucrose nor fructose is important here.
Dripdrop on the other hand https://dripdrop.com/pages/faq/ contains also sodium and potassium but in adition magnesium and zinc. The later too can help as most (but sure not all!) people can have some more of those. However the sugars (sucrose, fructose, dextrose and sucralose), with no mention of the ratios offer less opportunity for the intestinal Na+-glucose co-transport to work as Corts blog states (there is also a glucose-fructose cotransporter that IMO competes with the Na+(sodium) glucose cotransporter). Cort states it more simple: it better doesn’t contain sucrose (or worse, fructose, my addition). Dripdrop does have both, likely making it less efficient at rehydrating (when you are energy depleted to start with).
So, if price is equal your current solution seems closer to the WHO ORS solution and is believed to work better. The other one that has very good reviews seems more like a good solution for healthy people with normal fluid and energy levels and seeking to top up after sporting.
So the cardiologist that diagnosed POTS for me also should have diagnosed Orthostatic Hypotension too. I had been using Dr. Klimas’s advice and had 10 days of simultaneous blood pressure and heart rate readings taken in multiple positions and time of day to show the doctor. I had to beg and insist that the nurse take measures both lying down and standing. She initially insisted that it was not possible to measure blood pressure and heart rate while standing. No further testing to dig deeper was ordered not even a tilt table test.
The Mayo Clinic in MN should be my diagnostic center but they have been advocating GET and CBT. My doctor is currently defending a patient of their’s who has been turned down for disability benefits because the doctored suggested he take hot yoga and he has not followed that suggestion. I have been trying to get up the nerve to ask Issie which doctor and at which Mayo Clinic can be trusted with ME/CFS patients and is he taking new patients? And does he take Medicare? Last spring MEAction persuaded the NIH to pressure Mayo and managed to have GET and CBT removed from their website but they were still in clinical practice sending patients to the Pain Center where GET was used. The Minnesota Alliance has been working on this and maybe it is improving.
@janet, the more known subset type of POTS people have lower blood pressure. Only a tilt test can really let you know what your heart rate and blood pressures are doing and help fit you into the proper subset. Then there is the testing for NE and that is laying and standing. (It has to be done properly or you may miss it. Handling the blood a certain way.) There are test to look at kidney function, blood vessel health and function. Blood pooling and volume. It is really extensive to get all the answers. To really know what you are dealing with.
You need a doctor who is keeping up with the latest science as it is uncovering new all the time. Finding a good doctor is very hard. All POTS presentations are not the same. And what can be a help to one will make another even worse.
I went to Mayo Arizona and only suggest Brent GOODMAN and his Physician Assistant. (There is one neurlogist there who is NOT good.) But Dr. GOODMAN is excellent. I don’t know if you can get in with Medicare. They are supposed to take so many a year and then don’t have to take more. It is VERY expensive. And you need to make sure you have insurance. They send you from one doctor to another and do a good work up. There is a hotel right there close by and we stayed there the first 2 times I went. Then we moved there. Mayo is good for diagnostics, but prefers you find local doctors to work with and they will work with the local doctors for ongoing care.
I don’t think Mayo AZ is still pushing that “boot camp” idea. That is in MN. I can’t believe they are still doing that. We all were in an uproar over it when they started it. We are deconditioned, and we do need to move to assist our hearts to pump our blood and therefore oxygen to our hearts and head. But there are ways to do it and ways NOT to do it. Many of us with HyperPOTS also have Ehlers Danlos and Mast Cell Activation Syndrome. We call it the trilogy. That makes us have more issues with what we can do. And especially HOW we can do it. I can tell you, sitting down and not moving your legs is absolutely the wrong thing to do. You get weaker and POTS gets worse. I was in a wheelchair solid for over 6 months. In that time, everything got worse. So we have to move our legs and try to help our hearts to move our blood. As mentioned an exercise ball as a leg rest and fidget, fidget, fidget. This helps. When standing, always be contracting muscles in the legs. Sway, dance, shift weight from one leg to the other. But don’t stand still. Upright posture is the problem with us POTS people.
Dr. GOODMAN, I’m not sure what he is doing treatment wise for POTS. He tried all the traditional things with me. None of them a good fit for me. He told me I had the hardest type to treat. And because of my questioning how they were doing things, I caused quit a stir there.
This was before MCAS was even looked into, along with POTS. The immunologist read a book of information I had researched and given him. I questioned him on that and complement factors. He read all I gave him. Underlined and tab marked pages. He really felt I was on to something. They brought in another doctor to help him learn and research this idea. Now all POTS people are tested for MCAS. But this is hard to test for. It can be missed with labs. And when in a bad flare, hard to get to a lab or hospital in an hour to be tested. Symptoms are a key factor. (If it walks like a duck…..etc.) I no longer do traditional MCAS approach of treatment. I’m resetting my receptors. And much better now. But until I addressed MCAS my POTS didn’t get better. Dr. GOODMAN told me of the upset I had caused with my continuing to push for WHY. But they were glad as it added more reasons and was giving answers.
There are some doctors who are not keeping up with the research and just blanket treating POTS (the same old way, without considering subsets and other things going on). I had a most unpleasant experience with a neurologist who was stuck in that mode and would not listen. With persuasion of other POTS people and my family, I tried to stick it our with him for awhile, as they felt I should try to help “educate him”, against my better gut feelings to not go back. He seemed to sincerely care for his patients, but was so set in his agenda that he didn’t listen. He wanted to ignore other known peripheral issues and follow “traditional protocol”. That didn’t end well, for either of us. But I bet he will listen better now.
For myself, I have found Functional Doctors to be a better fit for me. I’ve educated myself and really don’t see doctors often now. I can manage myself and am very intuitive. The Functional doc I see is Jennifer Smith in Scottsdale. She will do zoom telemed too. She has to see you once a year to write RX. She is also an expert in CIRS (mold exposure detox). I do however stay in touch with Dr. Goodman, occasionally. I have also moved from Arizona. So need some local docs to continue monitoring other issues and for MRI etc.
The other option to help place your subset is seeing Electrocardiologist. The tilt they do is 45 minutes not 10 as the neurologist does. That gave us a whole lot more information. But be aware, a faint can sure happen with this one. If I had not been tied onto that table, I would had fallen off it. I started shaking and was so weak, my legs wouldn’t hold me. We had our DX though. Yayyyyyyy!
Hope you get some answers.
Thanks for the long, specific answer, Issie. Fortunately, I responded to Fludrocortisone and Midodrine well enough which gives me at least 3 minutes of standing time…maybe more on good days. I take a seat cane and footstool to doctors offices, teach doctor’s staff to get me laid down quickly, have a roller chair in my kitchen where I sit to work in short segments with breaks on the couch. I can walk a block now alone without PEM or a flare of myalgic pain syndrome. But I still want a 2 day CPET test to establish a diagnosis of ME/CFS and whether I could do more without triggering PEM. It just makes me mad that we can not get diagnosed! So I have been considering Batemen Horne Ctr., Klimas, California which would be really hard, or whoever you used. Thanks again for sharing both names.
My sister doc is Bateman. I have not seen her. Her primary focus is ME/CFS, not POTS. So depends what you want to see her for.
One of my friends who also has POTS has been all over the country seeing different doctors. She uses Dr. GOODMAN for POTS too. He is also on the board for Dysautonomia International. So if there is something new, I’m sure he would be aware of it. He is however in a clinical setting and there are certain things he can do and not do. Its not like he has his own practice.
I do believe that Mayo in AZ is an excellent place for DXs. Dr. Windgassen is a very good Internest there. She was my pivotal doctor. She orchestrated my seeing a huge variety of doctors and having my very thorough investigations. I highly recommend her. She is easy to talk with and doesn’t leave any stones unturned.
Hannah, if you’re still monitoring this (very helpful) post, I have a question about stretching. I too am hypermobile, and wrestle with the dilemma of needing yoga to prevent the body from going into a clenched state (in which it’s too painful to walk), vs the joys of over-stretching, leading to a lack of support from the muscles and tendons which feel like old, rubber bands that have lost their elasticity.
What I’ve recently been discovering is how to stretch the biggest problem areas (like certain leg-hip-joint regions that I had pretty much abandoned as too flimsy to work on) by tightening those specific muscles as firmly as possible (keeping them short) while simultaneously sinking into the overall stretch. Actually, I like to first center the contraction in my gut, which is an easily definable source of strength, and then spread the isometrics to the joints.
I’ve been pretty impressed by the results, feeling like I am actually increasing strength and stability relatively quickly without everything seizing up. I’m also practicing the same type of isolated contractions while on the gravity-inversion table (which I used to use primarily for release).
I haven’t had a physical therapist in some years, but I don’t recall anyone ever guiding me in this direction. So I wonder if this sounds familiar to you, as maybe there’s a knowledge base I can tap into to deepen my practice?
Hi, this post is so helpful, thank you! How do you account for the variability due to a menstrual cycle? My resting HR is significantly higher in the second half of my cycle. I don’t have a single “resting HR” value as a result. And I don’t always know, when my resting HR increases, if it’s due to that or overexertion.
May I suggest using the the Free Pacing Tutorial designed by Bruce Campbell and Dr. Charles Lapp at http://www.cfsselfhelp.org/pacing-tutorial Both tests men are longtime specialists in ME/CFS and slf-help. The site has other courses available as well. I both follow the site, with its free library of artiles and moderate for a course on this site.
As we learn more about ourselves and how we interact with our symptoms, it can become far easier to both pace and avoid stressful situations which so seriously drain our energies.
I rate the Workwell Foundation very highly. Their resource page is very useful for HR monitoring and PEM. They also will have thigs on youtube and vimeo where they will give presentations to various ME and Fibro groups. Well worth a search.
I wish everyone the best of lcuk. As I improved my inability to stand for long improved too. I feel very lucky.
I’ve just got a h10strap and want to use hr and hrv for pacing, but with this much brain fog it is sometimes hard to do research and figure things out. So I hope someone can help me with a few questions:
– is there a follow along step-by-step get started guide for severe and brainfogged patients?
– How can I get started with seeing if my autonomic nervous system is swinging into sympathetic dominance (PEM/crash), parasympathetic dominance (starting recovery), or is in a recovered state (baseline)
– how many hrv morning readings do I need before I know what the baseline is, and how to calculate baseline?
– how do I figure out which activities are activating the sympathetic dominance? Do you make a hrv reading during the activity, or do you do one while resting afterwards?
– is hrv4training worth the €10? That’s a lot of cash without a trial
Thank you in advance!
Hi all
Quick Q. How does HRV indicate PEM in numerical terms. What should I be looking out for?
Hannah, thank you so much for your story.
How often did you wear your heart rate monitor? I’m wondering if I should wear it continuously during the day (but also worried that might be quite uncomfortable).
Thank you!