UKH

After 9 months of enforced sofa life, due to long Covid fatigue and the evil that is post exertions malaise, I am just about managing to get through my days without a nap and feeling a bit more active.. hooray!

The ‘official’ advice is to take it super super slow with any exercise and avoid pushing yourself at all costs. But what does that actually mean? The examples are all about walking to the shops etc. well I can do that. Ive reintroduced a bit of climbing and all good so far. I want to try some actual strength and cardio training. Does anyone have any experience or knowledge of how to know what your limit should be in these circumstances? HR zones in some way? But what way? Because it’s clearly well below anything I’d have considered a limit in the past!

many thanks

mm

I've had about 3 years of long covid symptoms. At the start I was able to do my job and walk a few miles in easy countryside so I was relatively less affected compared to many folks. I managed after a year to get an hour zoom session with a long covid clinic nurse but the advice was very basic and only what I'd been figuring out myself - take it easy/slow, build up gradually, eat sensibly, get enough sleep etc. I haven't done any specific exercises but have very gradually built up. From initially very small hills I have managed to do a few bigger actual mountains to the point that I was able to climb a Corbett on Arran a couple of weeks ago (by the easiest route!). I'm not back to firing on all six (may never be) but progress has been apparent. It was interesting to see that when I got covid again last summer I seemed to be taken back somewhat but it hasn't lasted. Good luck and think like a tortoise to win this one, perhaps?

I think it's just a case of experimenting and working out what you can and can't do before the PEM comes on. I found I could swim and boulder fine as long as I didn't push it but anything that took my heart rate too high was bad. Anything over two hours didn't work and I couldn't do lots of days back to back.

I don't think it matters too much if you overdo it now and then, just keep an eye on it. 

Good luck! 

Three years in...

I think it's incredibly important to stay mobile and maintain wherever activity you can without triggering symptoms. And therin lies the problem, most of us have PEM which means we don't know we've done too much until several hours (or even days) after the event.

Be very aware though that a PEM crash doesn't necessary come after a single event, but can be cumulative after several days of higher than normal activity - I've not been able to leave the house since Monday after getting caught out by this (again!). Also your limits will vary on a daily basis, so being able to comfortably climb yesterday doesn't mean you shouldn't be on sofa rest today.

If your thinking of getting to a gym, look at the free nuffield health long covid recovery programme (you self refer), you need to have a good grasp of pacing to not push too hard and trigger PEM, but I found it incredibly helpful for reintroducing exercise. The in person course includes a free six month gym membership, and then the option of (around) half price membership after that.

We are all different, personally I find weights much better than cardio as I naturally sit and rest between sets (pacing though the session). I can swim with no ill effects, but find walking even short distances exhausting (and standing is even worse!), not tried climbing for a while but last time one easy route was pushing my limits.

Thanks, I’ve applied for Nuffield, good shout! I managed to walk parkrun this morning for the first time so will see tomorrow if that was overcooking it or not! 

Just for others' reference:

https://en.m.wikipedia.org/wiki/Post-exertional_malaise

I see a lot of negativity about the nuffield classes, but with a good instructor and by not overexerting yourself it can be really helpful. It is really important not to push yourself, the exercises are basically easy and as an outdoor person you are probably really good a pushing though some discomfort  - DON'T! 

Remember to pace though the classes never tiring yourself and always holding back enough energy for the next exercise. Go slow and rest, see how you feel a few days later, from that you can get an idea of how much energy you can/can't invest into a session. You are always trying to avoid triggering PEM and sadly your body will move the goal posts as to what it can do on a given day, but eventually you will get an idea as to what you can/can't do and what warning signs to look for indicating you need to stop and rest.

Some Realy good advice above, I'm 2 and a bit years in now (compounded by a heart attack 9 months before covid) and it's definitely about not pushing too hard. I have put on 30kg over the last 2 years so I have no doubt my biggest issue right now is UFFB (un fif fat bas...) but I crash fast if not careful. 

Exercise wise I got a pair of Anker ear buds with a companion app where I set a target heart rate and if I keep in the target zone they just play music but if I go above or below they nag me to speed up or slow down,  they are helping a lot once I figured out the max rate I can push without it flooring me for the next week. Unfortunately for me doing a physical job, that often pushes me over the edge, last week on a breakdown I had to get a 150kg blower out of a cabinet and in to my van and a 150kg blower from my van in to the cabinet to keep the site running. Normally I would get help but it was an emergency job and all the lads were on other jobs so...

It left me cabbaged for a few days and I had to change the diary round so someone could work with me for those days.

Edit to add, the one down side to the app is it doesn't let you set a rate, it let's you set an exercise range and sets the heart rate based on your age, height and weight.  It's very demoralising only being able to set it to light exercise and have it tell my my rate is too high on a 15 minute brisk dog walk. 

Thanks.. really helpful. How do you know what your HR limit ought to be? Just trial and error?

It was trial and error for me. I'm not sure I had a heart rate limit as such. Once I was on the mend my HR could go pretty high if it was only for a short time and I had a good rest immediatly afterwards/didn't do it again.

On the flip side, if I kept it low but went too long I'd relapse. Or did too many days in a row. The limits als changed quite a bit as I got better, so going off feel rather than numbers was the way for me.

I'd err on the side of caution but I'm not sure you'll ever really know what you can do until you've done it. I think you've just got to learn what your own limits are.

I think gently testing the limits when you feel ready helps too - after a while I found I could do more than I thought, which gave me a bit of confidence in what I could do, which improved my mood and I'm pretty sure that helped my recovery.

How recovered are you? Back to pre-sickness levels or at something less but still acceptable?

I don't have long Covid, but have some questions:

1. How do you best keep your sanity, as I find exercise is my best de-stressing mechanism, along with playing the piano, or possibly going to a concert with, or without friends?

2. In terms of the mechanism of what has happened to your cellular metabolism, as I understand it, the virus has latched onto your mitochondria. Presumably differing numbers of percentages of cells are affected in different patients? 

In the course of time, does the reproduction of the viral nucleic acid gradually come down? Has our immune system got some mechanism for recognising the cells with affected mitochondria? Or do some cells not have different looking cell walls than normal cells, even though they are affected?

I'm just curious, and trying to work out how the PEM comes about mechanistically.

a good question to which I only have a bad answer. It has involved medication, talking therapy, massive amounts of frustration and a good serving of failure so far. Thankfully I’m turning a bit of a corner and so is the weather!

I have no idea. Anecdotally there is a broad range of symptom profiles, indicating different systems affected in different people. Alongside the mitochondria theory is the mast cell theory and the microclot theory. Maybe they are all related, maybe they aren’t. It’s not clear yet afaik? My symptoms seem to tally with mast cells and mitochondria rather than clotting, but others are the opposite.

I think the science is still out.. unless you’re more up to date than me?

Aren’t we all…

This is a huge problem for most people with a chronic illness. LC doesn't cause depression, but living with it is certainly a strain and many people with previously robust mental health are now struggling. Pretty much every fun thing in our lives uses energy (mental or physical) and when you are stuck with an internal battery that never charges past 20% that doesn't leave much after you've done your essential tasks.

Even the experts don't really understand LC yet. However the symptoms have several different manifestations, so most likely it's not just one thing going wrong in our bodies  

No idea, but think the most exhausted you've been after a really hard day's climbing. One where your body is running on adrenaline from a combination of fear and excitement, but also utterly drained of energy from all the physical effort and with muscles you didn't know you had giving you an uninvited biology lesson. Now think about still feeling like that tomorrow, not just achy, but still wired and with an exhaustion that hasn't been touched after 12hrs of sleep. And then imagine how your body and brain would handle feeling like that constantly for a week.

Then imagine this week long broken feeling being triggered not by a by an epic hill day that will go down in memory, but from trying to shower on the same day that you did a modest supermarket shop.

A friend of mine has recently started on mast cell treatment - a low level of an anti-addiction drug I forget the name of :-/. Seems to having an effect with no side effects so far.

I didn’t have it bad after my first infection compared to many, but it was 12 months from me having Covid in early 2022 to me being back to pre-covid endurance, but with an extra stone or so to cart around.

The funny thing for me was that when my energy levels crashed after pushing to much and my thinking slowed down, I could fix my brain by being in a hot humid environment for a couple of hours - like a bath with the extractor turned off or a shower.  

I started to get a sense of when a bout of low energy was going to come on - a feeling in my chest and an almost palpable taste I can’t describe.  Recognising this let me push it when things were good and back off when they were bad. If you can identify your warning signs perhaps you can do that.

I had flu or a bad cold this January and it triggered a big relapse into post viral funk but I came out it in weeks not months.  Not a pretty insight into the aging process. 

Low dose naltrexone?

I'm the opposite, the colder the better. A cold soak is positively energising (but short lived), whilst being hot makes me flustered.

Pure trial and error, I a few days at a given rate, I'm okay, few more days a bit higher, I'm okay. I kept going until I wasn't okay then dropped back a step. 

The usual benchmark developed by ME patients is something like (220-age)*0.66 if you’re okay, and *0.5 if more severely ill. 
 

Do you know if you have dysautonomia?

Well that’s in common. It suggests something about homeostasis gets messed up.

I don’t think I have dysautonomia. I don’t have POTS. It’s much more MCAS for me. My max HR pre Covid (ramp test) was 189, so maybe I’ll use 0.66 of that. About 124. Seems low ish but also sort of doable. It’s basically zone2. My resting HR is about 52.

guess it’s massively personal though so I’ll have to suck it and see. Worryingly I did a 6 mile walk at the weekend and it totally flattened me. I doubt HR was too high, but clearly duration is a factor too..

I think heart rate starts to drift up over time while exercising and naturally long covid patients are much more sensitive to that sort of thing. Sorry to hear you did too much!

Thanks. Btw, do you some kind of professional involvement  in this stuff? Hope you don’t mind me asking.. The way you write your posts almost sounds like it.

It’s bloody annoying when I’m used to a decent session being 45 mins above 165.. 

the turbo is crying gently in the corner of the garage

Welcome to living with LC. Try 15 minutes with heart rate below 120, it's not much but better than nothing. 

Oh and be VERY careful to not find yourself doing graded exercise therapy. This has been proven to be damaging to ME patients and for most of us ME care is the most effective thing we've got.

No, merely an unlucky amateur! 

What is graded exercise therapy? Im not about to sign up for it after that commendation but it sounds a lot like something I’d do by default?!

I presume that long Covid is as varied, and at times nebulous, as ME(?).

In addition, there was something on a headline of news (today), which said that there may be an aetiopathogenesis of LC, based on a continuing immune reaction overshooting, time wise, and involving inflammatory processes, all of which might allow different approaches to treatment. Has anyone heard any more about this (I have had a long day of work, and have not had chance to find out more about those ideas, only getting home about an hour ago, dehydrated and needing food and water)?

Very basically GET means having a planned schedule for increasing activity based on a fixed incremental schedule. 

Instead any increase needs to be focused around YOUR body, so accepting plateau's in improvement and only increasing when you feel comfortably able to do so.

https://www.actionforme.org.uk/get-information/managing-your-symptoms/grade...

I was told to find my baseline and stay there for several weeks, then only increase by a maximum of 10% and again wait until I am consistently comfortable at that increased level for several weeks before increasing by a further 10%. (So if you start by walking for 20 minutes, it's going to take at least five months before you are ready to increase to 30.)

The research is from Imperial College, and there is going to be a little more information on the World tonight in a few minutes on Radio 4.

Following all of this with interest.

I'm four months into post-concussion syndrome and while I've never been able to walk super far since my TBI (max 6 miles or 300m elevation, rarely), I now can't even take the bins out without being out of breath, having chest pain and lots of fatigue - but chest x-ray, ECG both clear. I've also had various chest infections and other issues since 2020 and my GP now thinks I also have Long COVID, but this was never diagnosed at the time (for me it was less the fatigue and more the trashed immune system and new onset migraines that came post-Covid, though I think also some brain fog and inability to concentrate). So very curious about how you've all got advice on managing LC - it seems I've been muddling along with it for four years (took a GP with LC herself to realise). 

But I think a lot of this is similar to PCS - I've heard the phrases 'exercise intolerance' and dysautonomia but have no idea what to do with these. The lack of care/proper guidance, being left to research stuff yourself (but with added cognitive issues and screen intolerance), and the question of 'how do I manage my mental health now I'm not allowed to do or consume *anything*' are very much familiar... I really wish I could just build up my fitness gradually and get back into running, but *anything* feels like way too much at the moment, and Sheffield is rather short on flat places to walk.

I've also been told to pace and only use up 40% of my energy, or find my baseline and only increase by 10% - but - as daft as this may sound - how do you actually do this? My baseline varies so much from week to week (even day to day) and I think for me this is very much fluctuating with my cycle, but oddly I can't find any reference to this online at all.

Is this it?

https://www.nature.com/articles/s41590-024-01778-0

It sounds to be finding similar markers for inflammation, but the key researcher from Imperial college is a male, whose name I have forgotten, but who was mentioned on the World Tonight program. I suspect that it is in some part showing sponsors that they are finding things, and that it is worth still supporting them, whilst not yet coming to any succinct/worthwhile conclusions for a more targeted treatment of those with Long Covid.

So no, it's a different paper.

I know.. it’s an absolute pig. My threshold for PEM seems to vary from 3 hrs of gentle desk work from home to a full day out with the kids walking several miles, or even a semi decent indoor bouldering session! (I realise I am very lucky and others are in a far worse state, before anyone says it, but the challenge remains wherever the baseline is I think?)

That’s certainly the paper that was in the news yesterday, I don’t think there was another major one released yesterday. The World Tonight interviewed Peter Openshaw who is one of the authors.

Finding one’s baseline is tough for sure. Basically, you have to minimise your exertion until you don’t exacerbate your symptoms. Exertion in this context includes physical, cognitive and emotional exertion, and can in some cases include things like watching TV (or certain types of TV), using your phone or listening to music. Physical exertion may well be showering or the effort of digesting a large, carb heavy meal like pasta as much as it is going for a walk. Obviously this all depends on how severe one is and personal triggers; see the example above of wintertree finding heat beneficial and Jenny preferring cold. Anyhow just cut out everything that life consists of until you don’t get sick, and then proceed from there. It’s very difficult. Keeping a diary of activity and symptoms really helps to get a handle on things. 

I understand that symptoms varying with the menstrual cycle is very well known, but I’m not a woman so I have no idea about the details. 

One of the things that makes it so variable is its cumulative nature. You may have just done too much over a periods of several days beforehand, and then one activity you can normally tolerate pushed you over the edge. This is why a diary is useful as it helps to identify patterns. Bouldering is a great exercise for long covid sufferers as lots of laying around between short bursts of exertion is absolutely the name of the game…

Do you know if that was part of a trial? If not how did they access that as a treatment? The GP and long Covid ‘service’ still claim there are no pharmaceutical treatments..

If it’s low dose naltrexone you can buy it privately via Dickson’s Chemist in Glasgow. 

Fluctuations in symptoms linked to your cycle are very commonly reported within the LC community, also changes to your cycle. For both genders LC can cause hormone imbalances, and not just sex hormones with thyroid issues being very common as well.

For ladies of the appropriate age it's well worth discussing HRT with your doctor, as COVID messes with our hormones and some of us have had perimenopause amplifying our LC symptoms. https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(21)00228-3/...

Finding your baseline is bloody hard. Two weeks ago I was doing really well, two full yoga classes at the gym and various other things in the week, life was good. However I am currently on day 8 of LC house arrest, and even a gentle ME specific yoga zoom session was too much on Sunday.

With hindsight the middle week I was starting to go downhill, but after a few very good weeks of steady improvements I ignored the warning signs that I needed to stop (something I think active people are more likely to do as we have spent years training ourselves to push through). Pacing is is not easy and means doing less that you want or are capable of and never pushing close to your limits, the rewards of pacing are not crashing and avoiding long periods of enforced house/bed rest.

Thanks for that oddly specific recommendation!

It’s the only place in the country that you can obtain it easily, so if you want it, that’s where you have to go…

Thank you.

Thanks. Yep def agree on pushing through - years of trying to work or exercise through brain fog or LC migraines and definitely am no good at just stopping and staring at the walls. Thank you.

Are you anywhere near Millhouses Park?  That might be a good place to get out in a flat(ish) environment - an oasis of level ground in a sea of hills...!

Just realised you're local to me. 

Check out the Nuffield health course I mentioned in my first post on this thread - the instructor in Sheffield was excellent and really helped me gain confidence on returning to exercise, a treadmill is perfect if you want to find your baseline in a city built on hills.

I would also recommend checking out the ME and fibromyalgia charity, if you're on Facebook they also have a private group just for LC who have monthly face2face meetups, these are great for asking questions and sharing experiences with others who truly understand

I'd also recommend the yoga for ME charity who have sessions on a Friday lunchtime. Incredibly gentle and nourishing with slow mostly floor based movements and meditation, perfect for those days when you don't have the energy to move but are stiff and achy from being sedantry for too long.

I am confused about this LDN stuff and would appreciate any wisdom anyone has.. on the one hand it seems to get mention in a bunch of semi legit looking academic papers, with indications it is safe and helpful for ME/CFS and by extension LC. On the other hand the whole private prescribing through one Glasgow pharmacy and the ‘LDN research trust’ seems super dodgy! The list of potential conditions it can be used for on the LDN trust website is the full snake oil woo woo list, including several extremely aggressive cancers and other scare diagnoses. 
 

what gives?

It seems to help some people and, as far as I can tell it is harmless, there is only one way to find out if you're one of those people.

It's a pharmacy, legit as far as I can make out.

I guess it's up to you as to whether you want to try it...

Yeah, thanks. It’s a tough one. I know enough about the private prescribing world to be suspicious. It’s not that I think there’s anything illegal going on, it’s more that I think private prescribers will give you what you want, basically with minimal medical supervision. It’s a general issue, but the condition list on that site basically means anyone who wants it can get it. Give or take.. I’ll do my own due diligence on the safety front, because I don’t want to end up at my GP with some side effect of a privately prescribed med. hmm

Everyone has their own risk tolerance in these sorts of circumstances for sure.

One other thing I'd recommend - that is considerably less risky - is using a Garmin to help with pacing. Trying the facebook group "beat long covid with a smartwatch" for help in using them for this purpose (which they are clearly not actually designed for). There is also "endurance athletes with long covid" group which is useful, even if you're not an actual endurance athlete.

I'm totally with you on your schepticism of accessing drugs off perscription. Lots of talk of LDN in the international LC community, but so far I haven't been tempted.

As you say I worry that there is a drive (especially in the insurance driven US) to offer treatments without any proven benefits to patients, also sourcing from unlicensed sources (although the link Sean gives is hopefully legit) where I have no guarantees on what I'm actually taking is something I'm personally not prepared to risk.

But on the other hand, the NHS is proving incredibly resistant to recommending any kind of treatments of therapies for LC. So when you hear positive results from other sufferers I worry that we are being left in the UK and left to suffer unsupported, when X could be the thing to get me back to normal life.

​​​​​

Yes, I couldn’t agree more, on either side! Doesn’t help with the decision though. 

As Sean says LDN does have a lot of positive stories from sufferers and although research trails are currently limited they are showing it to have potential benefits. 

I have no expertise in this obviously but I did only get LC diagnosis when I happened to see a GP who has it herself, lost her practice as a result, and has been put up for awards for her work on it. She has been prescribing me various things off licence with no hesitation since, but not these. Seems the individual GP makes the world of difference.

Amazing - thank you! 

Sounds like you have a really good GP, far too many of us are having to do it own research and then fight to be taken seriously. 

The LC hub had been disappointing, but does have some useful resources. I'd also recommend this book (photo hopefully attached) which gives a really good insight into pacing, it's available in paper or ebook formats from Sheffield library.

Oops Sorry.

I had not realised that there was a second cohort of authors that had to be rolled out at the bottom, before they could be seen. I am not used to reading papers with so many authors on.

I was expecting something a little more substantive in the paper, giving a more definite idea of something of the mechanism of long Coronavirus; so I was a little disappointed.

Yes sorry - didn't mean to suggest things were other than as you said at all. Definitely the same experience as you with PCS anyway. Thanks for the book rec.

No apology needed, I'm just jealous that you've got one of the good ones. Mine were very quick with a diagnosis and at referring to the LC clinic, but then pretty much washed their hands of me.

Well, at least you’re thinking it has a physiological basis, there are still plenty of doctors who don’t. 

This of more interest to you?
https://www.nature.com/articles/s41579-022-00846-2

Seems to tally with my (non-long covid) experience of exercise. I can do a gentle run in the middle of zone 3 for about 30 mins, then after that, with no change in perceived effort, it starts to creep up into zone 4.

However, this could just be something to do with a wrist worn Garmin for HR measurement and my general unfitness.

I'm more or less back to normal, happily. My asthma is worse and I pick up every bug going but it's not too bad/probably a hangover from the lockdowns. Certainly don't get PEM or fatigue now. My aerobic fitness seems reluctant to fully come back but I'm out doing stuff again so happy days.

From the sounds of it I didn't have LC as badly as many on here. I was back at work and bouldering (within reason) after about a year and able to ride and run after about 18 months.

Wishing everyone the best. Hope you all recover fully soon.