CFS anaerobic exercise protocol (Staci Stevens): Can anyone explain it?

[fingers2022]

I think I may have figured it out. The key is to distinguish between the goals for daily activities and exercise. It is also important that the anaerobic system is used during the first 30 seconds or so of exercise AND if you heart rate exceeds the anaerobic threshold (AT).

*During everyday activities, we use aerobic energy for most things. Because our aerobic system doesn't work properly, we have to limit our activity to avoid PEM.

*In CFS, the AT can be low, so we may get into anaerobic exercise during normal daily activities. The body can't handle anaerobic activity for more than a very short time. This is the reason a heart rate monitor is recommended to keep the heart rate below the AT during daily life.

Not sure what you mean by the above, Lesley - when you say the body can't handle long duration anaerobic activity, you seem to imply it's because it's bad for you, but actually you simply have to stop or slow down due to lactate.....it just happens, because you get into oxygen debt. This is interesting - do most sufferers find they have to stop because they quickly get out of breath, lactic acid, or because it hurts too much (muscles etc.)? What is it that physically stops us? For me personally, the only thing that stops me is feeling ill (not fatigued in the normal lactic acid sense), and if I do more I feel more ill, then get more infections etc.

*If you are trying to exercise, aerobic exercise won't work because the aerobic system isn't working properly.

*The anaerobic system does work. The first 30 seconds or so of activity is anaerobic. If you are going to exercise you want to use the anaerobic system, which means doing 30 seconds of activity followed by rest.
So, first 30 secs is anaerobic regardless of intensity? Is this because the heart can't get oxygen around the body fast enough, i.e. there's a lag before we can use the aerobic system? Maybe this is my basic misunderstanding.

Thanks Lesley. If I understand what you're saying, there's an assumption that the AT of ME/CFS sufferers is low, therefore the activity doesn't need to be all that intense by normal standards before the anaerobic system kicks in.

I guess the theory is that the AT is low because the energy systems are damaged, rather than through deconditioning (or possibly a combination of the two?).

So what they are saying is that (relatively) higher intensity activity for short durations is better than lower intensity activity for longer durations. Hmmm, still seems counter-intuitive to me, and because I'm not deconditioned by normal standards, i would have to do fairly intensive activity to get above AT. My experience tells me that I get PEM whichever way I do it, and higher intensity, even if for short durations seems to have more adverse effect on me than lower intensity.

I need to read that paper propoerly. Sorry, this is not a very well thought out post (are they ever?).

 

[Wonko]

Lesley seems to have drawn the same conclusions i did/have - but we are afaik in the same place with this as a few weeks ago - we need input from someone who knows what they are on about rather than just hypothosising

with aerobic exercise what stops me isnt lactate pain - there is pain but not that sort - basically I feel more and more unwell, things (joints, muscles, coordination, enviromental processing etc.) start to break down, pain levels increase, muscles lock up, motivation obviously takes a hit etc.

if i push from this point I end up using all my energy simply staying more or less upright and blocking the pain, forward motion slows to less than a crawl (an hour or two for a couple of hundred yards) - but thats okay because by that time I'm barely aware of my enviroment or time etc - my short term memory is shot - I just know its taken forever and it will be forever until it stops - taking the next step without fallign over becomes my life - practically all I can remember and all I can see ahead

I've learnt from experience that allowing things to get that far is a bad idea lol - I used to be worse - I used to be slightly more determined than now (ie stupider) - I used to try and operate at that level - or close to it - not only was it not productive but I got a 'little' ill - several months in bed later......

of course it's not always like that - sometimes i can get away with pushing limits - and sometimes within the confines of whats sensible (ie pacing) I effectively have no limits (provided I dont push past them lol) - but it can be - it can be for months on end - it used to upset/annoy me - it rarely does anymore

as is obvious from some of my other posts I dont normally consider my physical limitations to be a major problem or even a signifcant disability compared with other aspects of M.E. - I've made adjustments to how I live and they are just something to be taken into account.

however( and this is where i get back on topic lol) they are at least partially time based - ie it's not so much the activity but the duration thats important - within limits obviously - I see them as aerobic limitations - I could be wrong but thats how I see them - for years things were different - provided I went slow I had much higher limits - that changed about a decade ago

tbh thats why when I am able I do much higher intensity stuff for a very limited duration - it seems to work for me

tho the 30 second thing to switch over to aerobic seems a bit odd to me as well - I work on a few seconds - 5 max - probably closer to 1 or 2 seconds of work followed by several seconds rest with a 3-5 minute total break every minute or so - why? for no other reason than coz thats what works for me

the lactic thing? I dont get it with any form of "exercise" - I get it sittign in a chair, I get it brushing my teeth, standing still, even lyign down - i get it in all sorts of wierd and pointless situations - I dont get it from exercise - no idea why - I used to

as to the protocol - still tryign to absorb it - it's quite long and I'm not reading much atm

 

[*GG*]

Have not read this thread, but seeing the name, I was wondering is there someplace on the East Coast or other locations in the USA that offer her disability testing?

thanks!

 

[river]

This thread is very interesting but also a bit too complex.

I think we need to simplify the general concept.
This is what I have read in a website

"The major symptom of CFS is exercise intolerance; that is fatigue brought upon by modest muscle activity. Muscle strength is not greatly decreased, but endurance is"

We're actually strong, I have been told I'm rather strong and I have no problem lifting an heavy weight if needed. But we have no endurance. I joke that I could work in a construction site, as long as I could rest and sleep every other minute. It's like as if our batteries are quick to run out and if we were toy cars we would be able to run very fat, but only for half a minute, before the batteries stop working and need to be changed.

In other words we can use intensity but we can't sustain it for long.
And I think that's what they mean when they say that anaerobic system works and aerobic system doesn't. Without overthinking details too much it simply means that we can't do anything that lasts for a long time, because our body can't tolerate or improve its endurance. On the other hand our strength is there and we can train it and we can have short bouts of intense activity, as long as they're short.

So we can even sprint, because our muscles are strong enough to run very fast for 50 seconds and during those 50 second we won't use oxygen and we will be using our anaerobic system. Only when the sprint becomes a matter of endurance, i.e. a long steady run, we start using our aerobic system and start feeling sick or we're going to suffer PEM.

This is a website I found that explains the time-based pathways of energy production, showing when we are using our anaerobic or aerobic system. http://www.brianmac.co.uk/energy.htm


1 to 4 seconds ------- Anaerobic-----ATP (in muscles)
4 to 10 seconds ------ Anaerobic ----- ATP + CP
10 to 45 seconds ----- Anaerobic ----- ATP + CP + Muscle glycogen
45 to 120 seconds -----Anaerobic,Lactic ------ Muscle glycogen

120 to 240 seconds ----- Aerobic + Anaerobic ----- Muscle glycogen + lactic acid
240 to 600 seconds ----- Aerobic ---------------------Muscle glycogen + fatty acids

As you can see an activity doesn't ever use the aerobic system at the beginning, and the heart rate is low at the beginning no matter how intense the effort, because it's long duration that increases the heart rate. Only after 4 minutes we start using the aerobic system, no matter how low intensity the activity is.

I remember doing an endurance test at hospital. I was told I had the numbers of an athlete after the first 3 minutes (and i felt good too) then suddenly my numbers worsed progressively, with my heart rate increasing too fast, my blood pressure decreasing and my muscle fatigue skyrocketing. As number worsened I felt like my legs were made of stone, I had nausea, brain fog, cold sweating and cuoldn't control muscle spasms. The test was stopped at 13th minutes for extreme low pressure, extremely high heart rate and extremely high muscle fatigue. After the test I suffered a month-long PEM.

But on a good day I can do push-ups for 1 minute and rest 2 minutes and I don't suffer any PEM
I can lift heavy objects and beat healthy people at an arm wrestling game but I can't do any long-lasting activity for the life of me; including talking for a long time without rest.

Walkin is different.
I can walk for 20 minutes without syntomes or PEM but I can't walk for 1 hour: my legs become heavy, I feel brain fogged and I get PEM. So it seems like walking allows a longer duration before the aerobic system defect kicks in.

So the real question is why walking is so different from any other aerobic activity, including speaking on the phone?

 

[Wonko]

your idea's are close to mine but all energy systems are operating at the same time

for the first 2-5 seconds work is done primarily (but not exclusively) using energy from the ATP-PCr system - this system doesnt require oxygen so could be called anaerobic - it doesnt use the KREB's cycle so metholation blocks etc arent relevant - it's also the most efficient energy system the body has by a long way but will drop to near zero output within 15 seconds

so yes - all things being equal raw strength persay shouldn't be affected provided the individual isnt so ill they have become clinically deconditioned

after a short while the muscle exaughts it's local ATP stores and energy production switches to glycolysis (sugar burning) - if the KREB's cycle isnt functioning this will lead to a significant bulldup of lactic acid due to the cells inability to convert it to pyruvate - it should be noted that oxygen is only used by the KREB's cycle to convert lactate to pyruvate so if it's impaired you are still primarily using an anaerobic energy system

in a normal continued training will result in an improvement of the efficiency of the lactate transport mechanism to remove it from the cell (where it goes to the liver and is reprocessed into somethgn useful) - thus improving their ability to deal with higher lactate levels - otherwise known as improving fitness (at least anaerobic fitness) - in pwME this is unlikely to happen as the KREB's cycle is impaired their lactate levels will be higher for a given amount of exercise - ie the system is out of balance

so aerobic vs anaerobic exercise - it's not so simple - even with anaerobic exercise you need to use the correct approach or your goign to have significantly more issues than a normal would

walking is a primary activity - in a natural environment if you cant walk your dead - the body priorities it as is essentially more efficient doing it than other activities - it's somethign the body is designed to do - which is probably why not being able to walk is almost instictively taken as a sign of severe disability by the general population (other than doctors and government workers obviously)

all of the above is just my understanding at this time, and may be subject to change if as and when I understand more about it - ie it's not fact, it's opinion based on what I've read and my experiences so far

 

[river]

your idea's are close to mine but all energy systems are operating at the same time

for the first 2-5 seconds work is done primarily (but not exclusively) using energy from the ATP-PCr system - this system doesnt require oxygen so could be called anaerobic - it doesnt use the KREB's cycle so metholation blocks etc arent relevant - it's also the most efficient energy system the body has by a long way but will drop to near zero output within 15 seconds

so yes - all things being equal raw strength persay shouldn't be affected provided the individual isnt so ill they have become clinically deconditioned

It's true that all the system are used at the same time
This is what I have found: http://www.brianmac.co.uk/enduranc.htm

AEROBIC ANAEROBIC
0-10 seconds 6% 94%
0-15 seconds 12% 88%
0-20 seconds 18% 82%
0-30 seconds 27% 73%
0-45 seconds 37% 63%
0-60 seconds 45% 55%
0-75 seconds 51% 48%
0-90 seconds 56% 44%
0-120 seconds 63% 37%
0-180 seconds 73% 27%
0-240 seconds 79% 21%

So, as you pointed out, we shold talk of "primarly anaerobic or aerobic" and not exclusively

after a short while the muscle exaughts it's local ATP stores and energy production switches to glycolysis (sugar burning) - if the KREB's cycle isnt functioning this will lead to a significant bulldup of lactic acid due to the cells inability to convert it to pyruvate - it should be noted that oxygen is only used by the KREB's cycle to convert lactate to pyruvate so if it's impaired you are still primarily using an anaerobic energy system

But it seems that lactic acid is produced only at the threshold of aerobic activity.
From 45 to 120 seconds there's a phase called "Anaerobic, Lactic" where lactic acid is still not used for energy production (hence not converted to pyruvate)

It's only in the next phase, the Anaerobic+Aerobic, that lactic acid is used and this is where the energy production defect of CFS would kick in, unable to turn lactic acid into an energy byproduct.

So it seems that from 1 to 120/240 seconds, we're in the safe zone. This is also compatible with most anaerobic resistance training, where the exercise phase doesn't last more than 1 or 2 minutes (sprinting, weight lifting, bodyweight training...)

in a normal continued training will result in an improvement of the efficiency of the lactate transport mechanism to remove it from the cell (where it goes to the liver and is reprocessed into somethgn useful) - thus improving their ability to deal with higher lactate levels - otherwise known as improving fitness (at least anaerobic fitness) - in pwME this is unlikely to happen as the KREB's cycle is impaired their lactate levels will be higher for a given amount of exercise - ie the system is out of balance

so aerobic vs anaerobic exercise - it's not so simple - even with anaerobic exercise you need to use the correct approach or your goign to have significantly more issues than a normal would

what do you think the right approach is?

 

[Wonko]

2-4 minutes of solid activity will result- at least in my case - in immediate severe lactate pain followed a few hours later by sigificant PEM (presumably a response to the additional stress of being in significant pain) - which is why I think your arguement is flawed

I train, when I have the spare energy, full body compound movements, high intensity, short time - in an hour session I am only carrying weight for about 8 minutes and only activily exerting force for about 2-3 minutes of that

thats broken up as roughly 2 seconds a lift (a good lift will take under half a second), 5 lifts, then total rest for 5-7 minutes (sometimes lying down), then repeat another twice per exercise - 3 exercises pre session - that is a total of 9 work sets per session of 5 reps each - so for a set your looking at 30 secs max actually holding or carrying the weight - inc setup and reracking time - followed by at least 5 minutes rest per set - and as I only do full body work it's not just one muscle group thats being used to support the weight but several

speed of exectution is vital, form is vital, rest (both betwen sets and in general) is vital - get any wrong and at best I'll get PEM'd

The weight must be heavy enough to induce a training effect but not so heavy that either form or speed is compromised - if a lift takes over 2 seconds (even a single lift) I will get PEM'd

I do not do bodybuilding isolation style movements at all - I'm not training for size or aesthetics - I train to make life easier - I've previously been critised for posting numbers so I wont - but they are now fairly respectable, not in in the same league as powerlifters of course, but given how I have to lift and the restrictions on how often I can lift they are ok - I'm no longer weak - not strong yet - never likely to be - but not weak

so I can train for over an hour doing heavy lifts with no bad effects other than using energy which I cant always spare - but the other week I managed to PEM myself in under 3 minutes doing a simple dynamic stretchign routine (new routine - forgot to break it up - result severe lactate issue followed by very unpleasant PEM for a few days) - which is one reason why I suspect that your upper limit of 4 minutes isnt accurate for pwME

 

[river]

so I can train for over an hour doing heavy lifts with no bad effects other than using energy which I cant always spare - but the other week I managed to PEM myself in under 3 minutes doing a simple dynamic stretchign routine (new routine - forgot to break it up - result severe lactate issue followed by very unpleasant PEM for a few days) - which is one reason why I suspect that your upper limit of 4 minutes isnt accurate for pwME

The other factor is also that PEM is often unpredictable.
I suffered from a 5 days PEM three weeks ago for no reason at all.
Nothing changed except weather.
But there are times I really feel suddenly sick or faint for no reason since nothing changed in my routine.
There are times where I feel expecially good and I don't know why; no brain fog, no short breath and I can do more activity without getting PEM
Other times I feel expecially bad and without a reason I'm brain fogged from morning to night with pin and needles feelings in my body and heavy legs and I can't even keep a pencil liften, without my arm collapsing after 10 seconds.

So I think the time-tolerance to exercise is variable and not always the same. At least for me.

 

[Wonko]

PEM isnt that unpredictable - most of the time I can tell if an activity will cause issues - of course sometimes I still have to do it (or choose to) and pay the price - but I know beforehand - tho sometimes I dont get PEM'd when I would expect to - but fairly sure I understand that in most cases now as well - time will tell on that one

of course there is the odd occasion when it comes out of the blue but thats a small minority of cases so I wouldnt in my case describe it as 'often'

I've had 1 instance of about 15 minutes with NO brain fog in the last 4 years - it's not a normal condition for me to be in now - the fog isnt bad now but it is there - it's always there - sometimes cripplingly more, sometimes less - but it's pretty much always there

in fact today seems to be the first day for a while that I can do more than hit and run the PC - log in, read 1 or 2 posts provided they arent too long/complicated and then disappear

atm even slouched here using the PC exerts more of a drain than I can sustain - ie I'm in negative energy balance atm - I cant actually walk (tho I can still hobble/shuffle) and require several minutes lying down during little things like making a drink - I havent trained for nearly 2 weeks as i havent had the spare energy - what energy I could muster was needed for more important things - I'm in a near constant state of mild/moderate "discomfort" - this was normal a year ago - it's now the exception and the result of a minor injury which has caused a mild flare - the injury has now healed - in fact it did after a few days - but the flare is still here

 

[helen41]

I recently had the testing done at Pacific Fatigue Lab, and my max HR was determined based on my second day of exercise, not the first. My HR at AT was 133 the first day, and 113 the second. I am not to go beyond 113. This is an excerpt from the report she sent

"Anaerobic threshold is an important index of the amount of work that can be sustained. Work intensities above anaerobic threshold require energy production derived from anaerobic sources limiting the duration at which such intensities of effort can be maintained, causing cumulative fatigue and extending recovery time. Most activities of daily living (reading, normal speed walking, computer use, office-type work, etc) are aerobic in nature and healthy individuals are able to perform such activities for prolonged periods of time with no meaningful physical fatigue. If anaerobic threshold occurs at low oxygen consumption, normal daily activities may exceed the energy demands that can be met through oxidative metabolism, thus requiring anaerobic metabolism to provide energy. This results in early onset fatigue and prolonged recovery."

 

[river]

I think some of the confusion comes from sports terminology as opposed to biological terminology

Cellular respiration - to get energy for the cells to work - can be aerobic or anaerobic.

Very simplified it works like this.

Aerobic respiration happens in the mitochondria and uses glucose and oxygen with end products of water, carbon dioxide and ATP (which cells use for energy.)

If there is not enough oxygen available, such as when you make demands on your muscles by running for a bus or doing heavy exercise, the cells have to switch to anaerobic respiration which has an end product of lactic acid and much less ATP. You then need oxygen to metabolise the lactic acid away.

This oxygen debt is why you pant and the lactic acid causes the stitch in your side.

In ME the mitochondria, which is where respiration occurs, don't work properly so we switch to anaerobic respiration much sooner than healthy people. We build up lactic acid which causes muscle pain and we don't produce so much of the ATP we need.

If we stay within the limits of our mitochondrial capacity to keep doing aerobic respiration we don't do ourselves any damage.

It's actually the other way around
Aerobic pathway occurs after anaerobic pathway and after the release of lactic acid
The beginning of an activity is always anaerobic (it doesn't need oxygen to produce energy)
It begins to need oxygen and becomes aerobic only if it turns into a long duration activity; i.e. if we keep doing it rather than stopping.
If the exercise becomes aerobic (as in any activity that trains endurance: running, swimming, rope jumping...) the lactic acid build up has already occurred.
If you stop before it become aerobic and it's still in the aerobic phase (it isn't lasting so much to need oxygen) then the lactic acid build up is prevented.

 

[Wonko]

not quite, according to my limited understanding, lactic buildup, as you describe it, will not be an issue if both the cell and hosts fitness levels are adequate to supply enough oxygen to allow the latate to be converted to pryuvate in house - lactic buildup should only be an issue in extreme circumstances in healthy indivduals - whilst fast glycolysis is a normal energy system it isnt designed to run for long unsupported by slow glycolysis and the associated cell acidity increases (which actually make the cell more efficient) will do serious damage to the cell if continued

so a system which rely's on maintainign fast glycolysis (ie keeping below the aerobic threshold) when the slow glycoctic system is impared is not good - IMO asking for serious trouble at some point - best to avoid the entire setup entirely (well as much as is functionally possible) and when things need doing rely on short bursts of work using the ATP-PCr system (and train when possible to increase the efficiency of this system)

but I'm still strugglign to understand this lot myself so take my opinions with a quarry full of salt - just because it works for me uptill now doesnt mean it will work for anyoen else

 

[Carrigon]

My system is all screwed up. Last year, I tried the exercise bike, and the disease actually let me for short periods of time, but when I tried to add small free weights separately and workout, that's what put me down for a month. I ended up down for a month with PEM. I never know what will trigger PEM. Sometimes I can feel sick just from walking across street or doing my laundry. And then I'll be down for days. I don't have a threshold feeling. Like I never know what is too much to do. Is five minutes too much, is fifteen? I never know. There's nothing in me that says, maybe you should stop now. I usually don't know until well after the fact and I can't move.

 

[river]

My system is all screwed up. Last year, I tried the exercise bike, and the disease actually let me for short periods of time, but when I tried to add small free weights separately and workout, that's what put me down for a month. I ended up down for a month with PEM. I never know what will trigger PEM. Sometimes I can feel sick just from walking across street or doing my laundry. And then I'll be down for days. I don't have a threshold feeling. Like I never know what is too much to do. Is five minutes too much, is fifteen? I never know. There's nothing in me that says, maybe you should stop now. I usually don't know until well after the fact and I can't move.

I wonder if you actually turned the exercise in a long intense aerobic session if you used very small weights and long sets and reps or maybe if you used circuits or something like this. Free weights should be heavy enough that you can do 8 reps and fo to failure at the 10th. Lifting should be fast and lowering (actually the most important aspect of the exercise) should be a little slower but overall one rep should take very little time, with proper form and good coordination. A set should be completed very quickly and there should be lot of rest afterward.

A good alarm to me is how I feel when I wake in the morning.
I know and this seems to be the case for others with CFS too, that if I wake up feeling tired then my whole day is doomed and I will feel tired in the afternoon and evening too. I have a theory about sleep too. The less I sleep the better I feel. When I go to bed late because of insomnia and I'm forced to wake up after just 4 hours because of telephone or door bell ringing, I actually feel a lot better. When I sleep 12 hours in a row I feel terrible.
My understanding is that the same energy-production defect in the mithocondria prevents normal rest energy production and blood sugar level balance at night.
The longer I sleep the longer the body is deprived of energy and glucose.

I actually think the ideal would be setting an alarm to wake up every 3 hours to eat something but that would play havoc with insomnia and other problems too.
Another factor I'm trying to control is temperature. I know my body doesn't tolerace very cold or very hot temperature.
I have the tendency to get very cold when I feel sick but also very hot and this is worse than cold. If I sleep with a blanket that is too thick or a room that is too how, I will feel terrible in the morning. Also if I can take a very short shower (less than 1 minute) just to cool down when I'm feeling hot, even 4 or 5 times a day; I feel a lot better the next day.

I'm mentioning this just to point out how many factors are involved in PEM (at least in my case, but in your case too it seems) that can be controlled and analyzed.

 

[Wonko]

okay - it appears we have a difference of opinion on what consitutes PEM lol

I dont class random incidents of feeling ill, sick, short bouts of severe disorrientating pain, random sensations, most forms of general electrical static, temperatature variations, weakness, sudden cognative failure, sudden visual failure or artifacts, shortterm overload etc etc etc as PEM

I class them as just M.E.

PEM is in most cases more general and long lived and makes life much more miserable - it lasts for a few days to a few weeks (tho months have been know but that I woudl generally classify as a crash)

Yes the above are more or less unpredictable - most of the time they dont come out of the blue tho - the occurences and severity is, or seems to be, related to both my general (trenwise) and specific (minute by minute) state of health and current (or recent) loading - ie if I'm reasonably well and not doing much then frequency is much lower than if I'm not well and pushing

maybe I'm just odd but I dont consider the little (and soemtimes not so little) 'inconvient events' which are common in pwME to be PEM - it's just somethign I have to put up with and work round - if others do then of course 'PEM' is much more unpredictable

if you dont mind me asking river how long have you had CFS - as your sleeping methods mimic mine about 20 years ago - about 5 years after onset

 

[heapsreal]

in reguards to weight training and avoiding a crash, try not to do too much that your out of breath, 1-3rep range is enough for an exercise and i think no more then twice a week(30min) for weight training with cfs and if the need arises take a week or 2 off if feeling unwell.

cheers!!!

 

[river]

maybe I'm just odd but I dont consider the little (and soemtimes not so little) 'inconvient events' which are common in pwME to be PEM - it's just somethign I have to put up with and work round - if others do then of course 'PEM' is much more unpredictable

if you dont mind me asking river how long have you had CFS - as your sleeping methods mimic mine about 20 years ago - about 5 years after onset

PEM to me is when the next three days I can't leave the bedroom, I'm short of breath nd my legs are contracted and sore and the sleep hadn't been restorative.
Sometimes PEM last for a week and sometimes a month. When the ilness was particularly acute and I didn't know about my limit I had a 5 months long PEM.

I have had CFS for 12 years.

 

[Carrigon]

In my case, what I suspect happened is that my PEM was directly related to POTS. I think it let me do some of the exercise bike because I was sitting down. But as soon as I tried to do an upper body standing weight workout, bang, PEM for a month. I have a huge problem with POTS attacks being triggered by different things. Cooking triggers it, and I think it's because of how I'm standing and holding my head to look at the food as I'm cooking. Showers trigger it, if the water is too hot or warm, but also, if I'm raising my arms. I've even triggered it trying to change a light bulb that was above my head, just the raising of my arms and tilting my head back did it. Something is going on with me and how the blood flows to my neck and brain. Makes me wonder if this disease would allow me to do workouts just laying on the floor and barely sitting up at all. That may be the trick of it. Finding a position that won't trigger it.

 

[Wonko]

river
not being physically able to leave the bedroom i would classify as a crash - it not being sensible to do so is either PEM or normal - depending on what time of day it is lol (I have to do a lot that isnt sensible as I live alone with no carer etc), legs, feet not working is more or less a daily occurance and I can drag myself around using walls furniture etc - pain has to be tolerated, if it cant be i crawl (which my cat thinks is great fun) - gulping air is just one of those things - tbh other people notice it more than I do, much the same as my coughing lol

Carrigon
fortunately my OI symptoms are mild most of the time - in fact on the poor mans test I dont actually make the diagnosis (27 point raise standing vs sitting - not 30)
increased lower body and core muscle tone could help with OI (stopping the blodd vessels from dialating as much - or thats the theory) - unless your in dnager of becoming deconditioned then I wouldnt think that you would derive enough benefit from a floor workout using free weights to offset the risks - most of my workout is legs and core based - I do very little specific upper body stuff - and with pronounced OI I would advise against even that much without a full power cage (and a helmet lol) - to help with basic conditoning I'd suggest a floor based yoga or pillates type routine broken up with frequent rests IF you can tolerate it - I cant as I've tried - it's far too demanding for me

edit - you can do most upper body weights sittign down you know - tho I'd still advise proper equipment for safeties sake and that upper body isnt necessarily what you should be focusing on - please dont do light dumbell work, curls, fly's etc as it's likely you will run a very high risk of being PEM'd on this sort of routine with little possible benefit - tbh that sort of routine doesnt even benefit normals much unless they've previosuly built up a signifcant strength base

 

[urbantravels]

Wonko, I think there are a lot of variations to the patterns of PEM, but of course you must realize that what is true for you is not necessarily true for every other PWC.

I've come to know my PEM pattern fairly well, and it doesn't always seem to be set off by a notable level of exertion. It's been my observation that sometimes a PEM "flareup" just happens for no discernible reason (no unusual exertion), sometimes happens for a very clear reason (when I *know* I'm over-exerting myself as it's happening, and am not in suspense to find out whether I'll be in PEM the next day because it's pretty much a lock), and sometimes is the result of a highly variable level of exertion. If the day starts off at a bad "baseline," then the threshold at which activity might trigger a PEM seems to be very low indeed. My typical PEM lasts about 2-4 days but can go longer.

Many exercise-minded people (and I used to be one of those myself, believe me) are very devoted to metrics and to "outsmarting" their body by playing numbers games. But I believe that, pending better and more thorough understanding of the physiology of ME/CFS, our ability to reliably predict how *our* bodies will produce and use energy is just not consistent. Trial and error is really the only method that has any usefulness for us at present, not hard and fast rules. We already know that our exercise physiology is abnormal, so guidelines based on "normals" are not necessarily useful for us.