Increasing aerobic workout - I crash after 15 mins - but want to gradually increase...?

[jeff_w]

The following is very dangerous to the vast majority of people on this board. It's also very seductive, because most people would prefer to do this than to pace themselves. I'm concerned that @Bansaw and others on here looking for advice will read the following and then be harmed by it:

I have been pushing myself now for 24 years and continue to do so. Life is too short not to squeeze out every second that you can. I tried the resting and pacing and it didn't make me feel any better.

The only reason why @TigerLilea has that "push yourself, life is too short..." philosophy is that she has an extremely rare, non-progressive form of ME/CFS. Another possibility is that she might be fortunate to not have ME/CFS at all.

In other words, if the vast majority of people on this board took @TigerLilea's advice, they would be made much worse. "Push yourself for 24 years" is a quick path to becoming bedbound if I ever saw one.

Her advice would only apply to people without this illness or to people with a very rare of form of ME/CFS that is resistant to progressing.

And @TigerLilea, I realize my post here might come across as a criticism of you. That's not my intent, because I know you meant no harm and were just sharing what works for you. I think you are extremely fortunate to have much more resilience than just about anyone else with ME/CFS. The problem is, you're so rare that your advice can really do damage.

 

[TigerLilea]

Have you considered an alternative diagnosis? If pacing doesn't make you feel better yet you can tolerate exercise and it makes you feel better, that might indicate that you don't have PEM, and ergo don't have ME/SEID.

I live with CFS exhaustion 24 hours a day and have done so for the past 24 years. I do have PEM and if I over do it on some days I can be down for a good week but to me it is worth it. I do have CFS/ME/SEID - what ever name you choose to call it. When I say I feel better I am talking mentally sharper and I sleep much longer at night.

 

[heapsreal]

I live with CFS exhaustion 24 hours a day and have done so for the past 24 years. I do have PEM and if I over do it on some days I can be down for a good week but to me it is worth it. I do have CFS/ME/SEID - what ever name you choose to call it. When I say I feel better I am talking mentally sharper and I sleep much longer at night.

I agree with you. Cfs can be relapsing and remitting . I have cycles where i can exercise and i do feel better afterwards. When im in a cycle like this and i start to feel awful after exercise i know my body cant handle it and its time to back right off.

many cfsers grab the opportunity to do something they like even though they know they could crash, just to feel normal or enjoy ones self even for a short time. Its probably not great advice but it happens. It might not be exercise but i have heard stories of people preparing themselves for their childrens wedding or some other function knowing its outside their boundaries and will probably crash. Its trying to grab a bit of normal life when u can and its a personal decision .

I think its dr lerner who mentions not exercising until one is at a certain level, i cant recall exactly but something like a 7 or an 8 out of 10 he recommends exercise. Exercise he mentions is probably within ones ability to recover without crashing.

i dont think anyone is suggesting that everyone with cfs should exercise. Im not sure about pushing but if functioning higher i guess it makes sense to test your boundaries . Always have to be on alert to not over do it. I know i have been carried away at times.

i think once a gym junkie always a gym junkie. Its hard to give this up and when improvements in cfs occur i know one of my main thoughts is i want to be able to exercise again, purely because its a hobby and something i enjoy and want to do again. I don't think it will help cfs and its a juggling act to avoid pem etc.

 

[Hip]

This thread seems to be full of warnings about the dire consequence of pushing past your physical exercise limits, with suggestions that this can cause a progression to a worse state of ME/CFS.

However, is there actually any evidence for this?

I am obviously not denying that pushing past your exercise limits can lead to a longer than normal crash, and that you will need to take longer than normal to recover from this. However, that in itself is not the same as causing a progression of ME/CFS.

Evidence of an exercise-induced progression would be where your ME/CFS has been stable for many years, and then due to doing too much exercise, you actually became permanently worse.

 

[heapsreal]

This thread seems to be full of warnings about the dire consequence of pushing past your physical exercise limits, with suggestions that this can cause a progression to a worse state of ME/CFS.

However, is there actually any evidence for this?

I am obviously not denying that pushing past your exercise limits can lead to a longer than normal crash, and that you will need to take longer than normal to recover from this. However, that in itself is not the same as causing a progression of ME/CFS.

Evidence of an exercise-induced progression would be where your ME/CFS has been stable for many years, and then due to doing too much exercise, you actually became permanently worse.

Thats a tricky one, maybe someone already in an exercise induced crash and continuing to exercise and push through it could induce a permanent loss of function??

 

[TigerLilea]

The only reason why @TigerLilea has that "push yourself, life is too short..." philosophy is that she has an extremely rare, non-progressive form of ME/CFS. Another possibility is that she might be fortunate to not have ME/CFS at all.

In other words, if the vast majority of people on this board took @TigerLilea's advice, they would be made much worse. "Push yourself for 24 years" is a quick path to becoming bedbound if I ever saw one.

Her advice would only apply to people without this illness or to people with a very rare of form of ME/CFS that is resistant to progressing.

I have belonged to several CFS groups over the years and have met people on other groups who also have CFS. I am amazed by how much some of these people are able to accomplish in a day compared to myself while having CFS. I don't think that I am a rarity at all. There are many sub-groups of CFS and not all of us are housebound/bedbound. I never have been. Eighty percent of my symptoms are the exhaustion, PEM and burning muscle pain. I function at about 40% of where I was before coming down with CFS. I was always very active before becoming sick.

If pushing myself for the past 24 years is a "quick path to becoming bedbound" then why am I not bedbound? Why are CFS people that I have become friends with over the years not bedbound? Each person has to discover for themselves what their limits are. Obviously some people are not able to do any form of exercise. However, it is a disservice to tell ALL people with ME/CFS/SEIDs that they shouldn't be even trying to find their limit.

And my "life is too short" philosophy has nothing to do with having a "rare" form of CFS. It has everything to do with losing both of my sisters 20 months apart (ages 51 and 48).

 

[Kyla]

This thread seems to be full of warnings about the dire consequence of pushing past your physical exercise limits, with suggestions that this can cause a progression to a worse state of ME/CFS.

However, is there actually any evidence for this?

I am obviously not denying that pushing past your exercise limits can lead to a longer than normal crash, and that you will need to take longer than normal to recover from this. However, that in itself is not the same as causing a progression of ME/CFS.

Evidence of an exercise-induced progression would be where your ME/CFS has been stable for many years, and then due to doing too much exercise, you actually became permanently worse.

I would say all of the reports of harms from GET fall into this category. Ie - people are reporting their overall health has taken a downturn following increased exercise , as opposed to having a short episode episode of PEM which certainly resolves by the time they take a retrospective questionnaire.

Anecdotally I would say many people on this board have reported this happening, including myself. I certainly wish I had known what I had, and that rest may have given me a better chance to recover, as opposed to going back to work, and "pushing through". Will I ever know for sure if this is what pushed my severity level up? No. Because there is no way to prove that from one person's experience. But it does seem to be consistent with what the majority of patients report.

In order to have more formal evidence someone would actually have to be looking for this, and since most studies looking at exercise in ME assiduously avoid collecting harms data, ( or avoid causing harm in the case of our more ethical researchers) there is not much to go on

 

[SOC]

I have belonged to several CFS groups over the years and have met people on other groups who also have CFS. I am amazed by how much some of these people are able to accomplish in a day compared to myself while having CFS. I don't think that I am a rarity at all. There are many sub-groups of CFS and not all of us are housebound/bedbound. I never have been. Eighty percent of my symptoms are the exhaustion, PEM and burning muscle pain. I function at about 40% of where I was before coming down with CFS. I was always very active before becoming sick.

If pushing myself for the past 24 years is a "quick path to becoming bedbound" then why am I not bedbound? Why are CFS people that I have become friends with over the years not bedbound? Each person has to discover for themselves what their limits are. Obviously some people are not able to do any form of exercise. However, it is a disservice to tell ALL people with ME/CFS/SEIDs that they shouldn't be even trying to find their limit.

And my "life is too short" philosophy has nothing to do with having a "rare" form of CFS. It has everything to do with losing both of my sisters 20 months apart (ages 51 and 48).

I'm curious as to whether you've done any kind of testing, such as the 1- or 2-day CPET, that would demonstrate the kind of metabolic dysfunction common in ME/CFS? It would be easier for other members to know whether it's wise to follow your advice if we knew if you were in the same subgroup as us in this respect.

Does your ME/CFS specialist support your "push through" program? If so, may I ask who that specialist is because s/he would be the first I've heard of that does. Does s/he give you any guidance about pacing while overdoing, or suggestions about treatment for symptoms after overdoing? That info could be useful to other patients if you have it.

I think it's pretty clear by now that there are a number of different conditions under the CFS umbrella. As a result, what might be okay for some of us could be very, very bad for many of us. This appears to be the case with exercise and pushing through PEM. NO top ME/CFS specialist I know supports the kind of advice you are giving. That is because they see the consequences of that behavior on the majority of their patients, and those consequences are bad.

That doesn't mean that there aren't people diagnosed with CFS who can do as you do, but I think that you must be in a small minority (as @jeff_w suggests) because the specialists who see and treat thousands of patients don't believe it is in any way typical.

Which is why I ask about the exercise testing. If you had results other people could compare to, they might have a better idea of whether they fall into your minority group or not.

 

[Kyla]

...and this already has its own thread, but I think is relevant to post again here:

http://www.meassociation.org.uk/wp-...No-decisions-about-me-without-me-30.05.15.pdf

74% reported that attempting to gradually increase their exercise levels (GET) caused them to decline.

 

[heapsreal]

I would say all of the reports of harms from GET fall into this category. Ie - people are reporting their overall health has taken a downturn following increased exercise , as opposed to having a short episode episode of PEM which certainly resolves by the time they take a retrospective questionnaire.

Anecdotally I would say many people on this board have reported this happening, including myself. I certainly wish I had known what I had, and that rest may have given me a better chance to recover, as opposed to going back to work, and "pushing through". Will I ever know for sure if this is what pushed my severity level up? No. Because there is no way to prove that from one person's experience. But it does seem to be consistent with what the majority of patients report.

In order to have more formal evidence someone would actually have to be looking for this, and since most studies looking at exercise in ME assiduously avoid collecting harms data, ( or avoid causing harm in the case of our more ethical researchers) there is not much to go on

Is GET continually pushing people during this treatment ?

This may be different to those who back right off when feel bad from exercise and wait until they feel better before attempting exercise?

I recall nancy klimas introducing a form of get or exercise but only when one is at a certain level and exercise intensity is monitored by heart rate monitors to control intensity. Not all exercise is the same or prescribed to same people with different levels of function. I think when exercise is mentioned in cfs its different to normal people.

 

[Kyla]

Is GET continually pushing people during this treatment ?

This may be different to those who back right off when feel bad from exercise and wait until they feel better before attempting exercise?

I recall nancy klimas introducing a form of get or exercise but only when one is at a certain level and exercise intensity is monitored by heart rate monitors to control intensity. Not all exercise is the same or prescribed to same people with different levels of function. I think when exercise is mentioned in cfs its different to normal people.

Nancy Klimas is not pushing GET. She is recommending a reconditioning program, but it is predicated on the idea that there is only so much increase before a plateau, and after that point no more improvement will occur. Ie - you are using HR monitors to do/ build up to whatever level of activity is safely within your envelope.

Part of the problem is all of these terms being used interchangeably for very different things. Ie - she is NOT stating that increased activity will somehow "cure" ME, or that you can build back up to the level of activity that would be achievable for a healthy person of the same age.

 

[heapsreal]

Nancy Klimas is not pushing GET. She is recommending a reconditioning program, but it is predicated on the idea that there is only so much increase before a plateau, and after that point no more improvement will occur. Ie - you are using HR monitors to do/ build up to whatever level of activity is safely within your envelope.

Part of the problem is all of these terms being used interchangeably for very different things. Ie - she is NOT stating that increased activity will somehow "cure" ME, or that you can build back up to the level of activity that would be achievable for a healthy person of the same age.

Basically what i said except i didnt mention klimas pushing get. I was referring to get proponents pushing patients through their programs and not allowing for them to pace themselves, continually increasing intensity.

i dont know enough about klimas ideas on exercise but it could be classed as a form of get or u could use reconditioning program, something klimas may have used to distinguish it from the bad forms of get , wessely get programs which are dangerous .

 

[Mij]

This thread seems to be full of warnings about the dire consequence of pushing past your physical exercise limits, with suggestions that this can cause a progression to a worse state of ME/CFS.

However, is there actually any evidence for this?

Have you seen Mark VanNess's video? He had a women who continued to run marathons, obviously high functioning MEer, when she came back to do the CPET test she was WORSE. Go to 25:24 minutes

I have my own experiences and I can say, yes it does make you worse. I have improved a lot in the last 7yrs but my PEM symptoms are worse (from overdoing) than 15yrs ago, it happens gradually so that you may not notice. I no longer get PEM because I plan, pace and get adequate rest, but the pathology is always there.

 

[TigerLilea]

I'm curious as to whether you've done any kind of testing, such as the 1- or 2-day CPET, that would demonstrated the kind of metabolic dysfunction common in ME/CFS? It would be easier for other members to know whether it's wise to follow your advice if we knew if you were in the same subgroup as us in this respect.

Does your ME/CFS specialist support your "push through" program? If so, may I ask who that specialist is because s/he would be the first I've heard of that does. Does s/he give you any guidance about pacing while overdoing, or suggestions about treatment for symptoms after overdoing? That info could be useful to other patients if you have it.

I live in Canada and there aren't any CFS specialists in British Columbia, and a 2-day CPET scan is out of the question. I doubt very many people have had these tests even if living in the US. I should go back to calling my illness Post Viral Fatigue Syndrome which is what I was originally diagnosed with. Maybe it isn't CFS/ME, however, my doctor is under the impression that they are the same illness.

 

[SOC]

I live in Canada and there aren't any CFS specialists in British Columbia, and a 2-day CPET scan is out of the question. I doubt very many people have had these tests even if living in the US. I should go back to calling my illness Post Viral Fatigue Syndrome which is what I was originally diagnosed with. Maybe it isn't CFS/ME, however, my doctor is under the impression that they are the same illness.

It is my understanding the Post Viral Fatigue Syndrome and ME/CFS are definitely not the same thing. However, if the doctor who diagnosed you thinks they are, you could have either one, so I guess you still don't know. I assume the doctor who diagnosed you is a GP without much experience diagnosing or treating ME/CFS?

Why is a 2-day CPET out of the question? It could clearly confirm (or deny) your feeling that you can safely push yourself the way you are. The 2-day CPET could be done anywhere the CPET is done, which is any hospital with a cardiology unit.

The activity advice you are giving is contrary to that of the top ME/CFS specialists and the exercise physiologists who study ME/CFS. Since you are not seeing one of them, and haven't had the testing to verify aerobic energy system dysfunction, you might want to be careful about advising behavior that, while it works for you, may be very bad for the vast majority of people with ME/CFS. This is a better safe than sorry situation. The odds that pushing and overdoing will cause permanent harm or long-term deterioration may not be 100%, but our experts think that the risk is unacceptably high. Do people who don't see a top specialist or have the exercise testing to know the state of their exercise capability want to gamble that they are in the few percent who may not suffer long-term effects of push-crash. I don't think so.

 

[heapsreal]

@Mij
great video and correlates with my experience.

they mention training anaerbic system to improve function as the aerobic system is broken so training aerobically to improve function is hazardous .

all the treatments i have done i think have helped me to function well with cfsme but i often wonder if my pre cfs anaerobic fitness is what has helped me to be able to keep going. Pre cfs i was never good at aerobic stuff, long distance running etc. At school i was very much the sprinter and shot putter etc activities that were short duration. Once i left school i continued weight training so continued to train and improve anaerobic fitness . then struck by cfs but with a good 20yrs of anaerobic training behind me.

I noticed in the video he mentions doing activities that reduce or avoid deep breathing type, out of breath activities and resting alot between bouts. When i do exercise this is how i incorperate it.

I always remember the PE classes i took talking about the different energy system, phosphate, lactate and aerobic energy system. I think it was dr cheney many years ago saying the aerobic system is broken. I think this is why i have been cautious of aerobic activity. Probably cheney who was apart of those original ampligen studies measuring and doing the original 2 day testing.

cheers

 

[heapsreal]

I live in Canada and there aren't any CFS specialists in British Columbia, and a 2-day CPET scan is out of the question. I doubt very many people have had these tests even if living in the US. I should go back to calling my illness Post Viral Fatigue Syndrome which is what I was originally diagnosed with. Maybe it isn't CFS/ME, however, my doctor is under the impression that they are the same illness.

I would think post viral fatigue wouldnt last 24years and if it did would than put u in the cfsme category. You still sound like u fit the ccc criteria for cfs. Problem is that theres no definitive way to diagnose the level of cfsme especially if relapsing and remitting . Again, with dr lerners disability score its possible if one is a 7 out of 10 or more that one could exercise or work. Theres definitely different levels of this illness is just the level of crap we are in. Some are up to their neck others their knees.

 

[Mij]

I was also diagnosed with PVFS by an M.E specialist in Canada. He later diagnosed me with atypical M.E. after I had a relapse.

I'm not sure that PVFS last for 24yrs?

 

[Mij]

@heapsreal your post beat mine. I was thinking the same thing re PVFS

 

[Hip]

Have you seen Mark VanNess's video? He had a women who continued to run marathons, obviously high functioning MEer, when she came back to do the CPET test she was WORSE. Go to 25:24 minutes

That was an interesting story. Thanks for posting that video.

Though I think if she was doing this marathon training in the early stages of her illness, which as many of us know, is a period where you tend to get worse and worse for a quite a few years until you stabilize, then it could be that she would have worsened anyway, with or without exercise.

I think the only reliable stories would come from patients who have had ME/CFS for some time, and have stabilized, and then once stabilized, embarked on an exercise program.

I would say all of the reports of harms from GET fall into this category. Ie - people are reporting their overall health has taken a downturn following increased exercise , as opposed to having a short episode episode of PEM which certainly resolves by the time they take a retrospective questionnaire.

Ditto for this. If those who were thrown into a GET program were in the early stages of ME/CFS, they are likely to be getting worse anyway for the first few years (assuming they are the gradual onset type).