• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Is there any evidence that deconditioning alone causes pain and fatigue?

oceanblue

Guest
Messages
1,383
Location
UK
This may be a stupid question, but while reading researchers explain how inactivity leads to a vicious cycle of fatigue and pain/symptoms, I haven't actually seen them cite published evidence that this is true - is there any? I've seen lots of assertions but no concrete evidence. There's some evidence that it plays a role in chronic pain but I've seen nothing that could explain chronic pain completely (or even substantially).

If there is any evidence, could someone point me to it. Thanks.

ps not a sarcastic question, I am genuinely interested but puzzled by how hard it is to find any such evidence.
 
Messages
43
Hi

physical inactivity causes deconditioning - however in ME I suspect deconditioning occurs by two processes, 1. lack of physical activity and 2. inflammation that damages cells, e.g. increased free radicals, lower ATP, and so on: I think Cardiovascular deconditioning is a major problem in ME. Pain is way more complex, and probably is only slightly related to deconditioning. We know exercise increases our tolerance to pain, thus the opposite might be true.

this is a controversial thing to say, but as an ME sufferer with severe ME, I find that the psychiatrists are right in one small way, that is, to just lay in bed doing nothing but resting will weaken you and staying home and being isolated will lead you to develop agoraphobia, perhaps depression and so on: thus in my view, we must move when ever possible, via what ever form of exercise we can do, I called mine "micro-movement" - if I have one hour in the day that I feel really well I do a few minutes on my exercise bike, or pick up light weights, if I am having a bad day it might just be going down stairs to pick up the post, or getting in and out of bed every hour or so.

but I am more and more aware of the vital need to move --- however I DO NOT agree with Graded Exercise as a therapy for me. GET is different, it is too unitary, has targets which I think is wrong, doesnt account for boom and bust, doesnt account for daily and hourly changes in symptoms, almost places responsibility on the patient, ie if goals are not met. Also its promoted as a treatment for ME, its not, its an adjunct part of ME management, it doesnt cure anyone. We need to find the underlying biological cause.
 

oceanblue

Guest
Messages
1,383
Location
UK
physical inactivity causes deconditioning -
... Pain is way more complex, and probably is only slightly related to deconditioning. We know exercise increases our tolerance to pain, thus the opposite might be true.

this is a controversial thing to say, but as an ME sufferer with severe ME, I find that the psychiatrists are right in one small way, that is, to just lay in bed doing nothing but resting will weaken you and staying home and being isolated will lead you to develop agoraphobia, perhaps depression and so on: thus in my view, we must move when ever possible, via what ever form of exercise we can do,

but I am more and more aware of the vital need to move ---
Hi Keith. I wasn't doubting that inactivity causes deconditioning, I was looking for published evidence that deconditioning causes (not merely contributes to) fatigue, pain and other symptoms.

Maybe you didn't mean it that way but "staying home and being isolated will lead you to develop agoraphobia" is the sort of nonsense that really raises hackles round here - unless you have any published evidence to back that up. Staying at home and being isolated through ill health also leads to a yearning for social contact.
 

Guido den Broeder

Senior Member
Messages
278
Location
Rotterdam, The Netherlands
I have seen no evidence that inactivity causes anything at all. There are only correlations, which can be explained by things like food that doesn't match lifestyle, neglect of specific muscles, wrong posture etc. But inactivity by itself does nothing, AFAIK. It is much healthier than being an athlete.
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
Not sure of your experience with me/cfs Keith, or the amount of time you have spent reading research or posts on forums, but your comments are contrary to what most of us have been struggling to explain for decades, and my comments are made in this light.

Hi

physical inactivity causes deconditioning - however in ME I suspect deconditioning occurs by two processes, 1. lack of physical activity and 2. inflammation that damages cells, e.g. increased free radicals, lower ATP, and so on: I think Cardiovascular deconditioning is a major problem in ME. Pain is way more complex, and probably is only slightly related to deconditioning. We know exercise increases our tolerance to pain, thus the opposite might be true.

Really? Physical inactivity causes inflammation and lowers ATP production? Remarkable that it only happens in me/cfs, and that every couch potato gets to have a relatively normal life.

Strange how many of us were athletes immediately prior to sudden onset and continued to push physical limits, despite our illness. If the psychiatrists bothered to listen instead of designing studies to meet their desired outcomes, they would know this. How lazy are the researchers? One could argue the same could apply to their conjectures. I was used to swimming a km before work, then one day and for evermore I could only swim 500m and any effort left me vomitting for six hours.



this is a controversial thing to say, but as an ME sufferer with severe ME, I find that the psychiatrists are right in one small way, that is, to just lay in bed doing nothing but resting will weaken you and staying home and being isolated will lead you to develop agoraphobia, perhaps depression and so on: thus in my view, we must move when ever possible, via what ever form of exercise we can do, I called mine "micro-movement" - if I have one hour in the day that I feel really well I do a few minutes on my exercise bike, or pick up light weights, if I am having a bad day it might just be going down stairs to pick up the post, or getting in and out of bed every hour or so.

I experience depression only after physical or mental exertion. After 24 hours these symptoms go away. I am sure this is the same for many me/cfs patients. Not sure about the agoraphobia. My reluctance to go out is a direct response to limiting energy drain, or to physical incapacity, not agoraphobia. Again this is the same for many patients. Not even sure agraphobia is a recognized symptom of me/cfs.

but I am more and more aware of the vital need to move --- however I DO NOT agree with Graded Exercise as a therapy for me. GET is different, it is too unitary, has targets which I think is wrong, doesnt account for boom and bust, doesnt account for daily and hourly changes in symptoms, almost places responsibility on the patient, ie if goals are not met. Also its promoted as a treatment for ME, its not, its an adjunct part of ME management, it doesnt cure anyone. We need to find the underlying biological cause.

So do you believe a better designed form of CBT would work? Sorry, it works against any understanding of the mechanism of me/cfs we have. Generally a focus on one aspect of activity will lead to diminished performance in others. It's simply a matter of understanding that if mitochondrial dysfunction or ATP production has a direct impact on energy levels, then CBT only channels the scarce energy resources into a narrow channel, to the detriment of other activities. How on earth does CBT increase ATP production?

Furthermore by challenging the threshold of energy output, sooner or later you will tip over and overtax other systems. Inevitably it leads to crashing. It may take months, but it is inevitable, because by the very nature of CBT, no matter how slowly you take it, you are trying to get more and more out of a failing battery.

Just a simple example of the energy redistribution that goes on. I actually have the willpower to get out of bed to do light exercises almost every day, then go back to bed. I feel good about myself, but I am still in bed. I have been doing that for six months. Also in that time I have lost 10% of my body weight, and I was underweight to begin with. I might also add that for many of us, it is OI or POTS which confines us to bed, not actually fatigue. And if it is OI that causes the inactivity, it is difficult to understand why anyone is even considering deconditioning as a factor.
 

Calathea

Senior Member
Messages
1,261
My guess is that deconditioning only causes problems with people who are far, far too inactive for their level of ME. And these people are next to non-existent, because practically everyone is constantly battling with overdoing it, both for personal reasons and due to social pressure. The very rare ones who immediately rest like nobody's business the minute they get diagnosed are the ones who actually recover fairly fast and we don't hear from them again.

From personal experience, I only ever noticed one effect that could be ascribed to deconditioning. I live in a single-level flat, up a flight of stairs. When I am too ill to get out often, it's rare for me to climb stairs, and it seems that when I do climb them, they're proportionately harder than you'd expect based on how I'm doing with other activities. If I'm able to get into a routine of using the mini exercise bike, the stairs aren't as bad, presumably because the relevant muscles are more in practice. This never happens for long, as I always end up triggering an ME crash from even 2 min exercise a day. When I get back to being well enough to go out relatively often, say once or twice a week, the stairs go back to being a bit easier again, so it's something which is easy to recover from when I get to that stage, and does not cause long-term problems. Whatever state I'm in, the stairs are always hard. If I was living in a house with stairs, I think my illness pattern would be entirely different - and for the worse.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Sorry. Never been 'decondioned' in my life.

While I can't tolerate aerobic exercise and therefore haven't done any regularly for 25 plus years (I have tried to my cost), apart from a period of a few months following a bad crash, I have been as active as most sedentary office workers.

There is plenty of published evidence that enforced inacitivity (being bed bound, following limb immobilisation etc) does lead, fairly rapidly, to muscle loss and changes in muscle fibre type - hence the physical rehabilitation programmes for battlefield casualties or accident victims for example. I don't recall pain being specifically mentioned.

So I could see the rationale for suggesting that deconditioning might play a part for those who are bedbound. Very little activity is needed to avoid this level of deconditioning though so we're probably talking constantly bedbound.

Except the argument falls down when the studies citing deconditioning exclude the 25% with severe ME, preferring to study the ambulatory 'CFS' folks who can make it to the clinic and are highly unlikely to be deconditioned as described above.

Anecdotally, most days I can walk, carry etc just fine as long as I avoid PEM. After that I can't walk at all. My muscles didn't just become deconditioned in the space of a few minutes.
 
Messages
15,786
to just lay in bed doing nothing but resting will weaken you and staying home and being isolated will lead you to develop agoraphobia, perhaps depression and so on

I have found the opposite to be true. The more I do, the weaker I become. The more I rest, the stronger I become. While deconditioning undoubtedly affects us just as it would any healthy person, the effect of deconditioning is completely insignificant compared to the effects of the disease.

thus in my view, we must move when ever possible, via what ever form of exercise we can do, I called mine "micro-movement" - if I have one hour in the day that I feel really well I do a few minutes on my exercise bike, or pick up light weights, if I am having a bad day it might just be going down stairs to pick up the post, or getting in and out of bed every hour or so.

Again, I disagree. A few minutes on an exercise bike would come at the expense of being able to sit upright for an hour or two in the evening, and probably trigger a crash the next day as well. On a bad day, stairs aren't even an option - I slept downstairs for a month, until last night, because I simply could not go upstairs without having severe symptoms.

I laid down almost all of the day for at least two weeks when my OI was too bad for me to even sit up for a minute without being badly effected. Contrary to what physiotherapists and CBT and GET practitioners would have me believe, bed rest eventually increased my ability to do more, and it made a HUGE improvement in my mental capabilities. Eventually I was able to walk upstairs again with only mild symptoms.
 

Waverunner

Senior Member
Messages
1,079
this is a controversial thing to say, but as an ME sufferer with severe ME, I find that the psychiatrists are right in one small way, that is, to just lay in bed doing nothing but resting will weaken you and staying home and being isolated will lead you to develop agoraphobia, perhaps depression and so on: thus in my view, we must move when ever possible, via what ever form of exercise we can do, I called mine "micro-movement" - if I have one hour in the day that I feel really well I do a few minutes on my exercise bike, or pick up light weights, if I am having a bad day it might just be going down stairs to pick up the post, or getting in and out of bed every hour or so.

Crashes should be avoided at all costs but as long as exercise doesn't cause mid- or longterm negative effects it should be pursued in my eyes. It's so much harder for a PWC and costs so much more energy and overcoming to conduct physical activity but inactivity normally takes its toll on all humans. A mistake many of us make, is to compare their situation with the situation of others. For some of us it's possible to exercise a little for others it's not, we are different. I would say however, that the longterm benefits of exercise can outweigh some short-/midterm problems they cause in some of us. Claiming that people should go out with their illness in order to not get isolated and depressed is something that is based on a false believe. If your illness is purely psychological, this can work. Ill people do not get out so much because they are ill. If you feel better when going into the city and meeting lots of people, do it. Your ME cannot be so severe then. The point is, it makes no sense to do something when it's actually bad for you. PWCs don't stay at home because they are lazy or a little fatigued as other people, they stay at home because they have a severe disease that prevents them from enjoying and doing things, which healthy people can enjoy and do.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I would imagine most house/bed/chair-bound super-morbidly-obese folk could be a sort of control to look at - they will be seriously deconditioned.

I also think different folk will react in different ways to things such as being stuck in the house for far too long - some may crave company - others may become frightened of dealing with company because they haven't done it for so long, while yet others may develop full-blown depression.

I don't think it's at all fair to criticise folk who have a different reactions to you for the same situation, for their reaction. It's individual.
 
Messages
13,774
I don't think it's at all fair to criticise folk who have a different reactions to you for the same situation, for their reaction. It's individual.

Yeah - I think it's best for people to find out for themselves what works best for them.
 
Messages
54
Location
Australia
In my case I believe that going to bed for 6 weeks when I first contracted ME/CFS did indeed cause deconditioning of my muscles. I wish I hadn't been told to go to bed and do nothing. As far as one is able to move around with this without causing a crash one should. ^ years ago I came down with another disease that kept me bedbound for 1 year and that also caused further deconditioning and loss of strength and unfortunately joint seizing from lack of movement and I can not get back what I have lost. There needs to be balance if possible between movement and rest.
 

SOC

Senior Member
Messages
7,849
We seem to have slipped away from the main point of this thread which is -- Is there published scientific evidence that deconditioning alone causes pain and fatigue. I'm interested in this question, too. There's all the "everybody knows" talk, but is it scientifically supported?

That said, I'm going slightly off-topic, too. :D My exercise testing early in the illness showed that I had definite abnormalities not attributable to deconditioning. Many of us were unquestionably not deconditioned when the pain and fatigue first hit, so the idea that deconditioning causes our pain and fatigue is utter nonsense IMO.
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
A little change in the subject, but along the same lines. Has muscle cramps changed in intensity, frequency and situations that cause them. For instance I can twist hard, say to scratch and I will get a cramp in the opposite side (which I did not used to do). If lying down and move over and get the urge to stretch I may get a cramp in low back or possibly calf or reach for something in cabinet it will be in a back muscle or in the tricep (back of arm) muscle. But in all of these situations if I quickly retract from that position, the cramp will stop. However, if I immediately make the slighest move back to the position that caused the cramp it will return. Then there will be other times that these same moves will not cause a cramp at all.

If I take a small 5 lb. dumbell (no not one of those people that think ME/CFS is all in our head) and curl it just a few times and when it gets to full contraction it will cramp so bad that I have to use my other arm to pull it out, but once it is pull out only a few inches it will quit.

I used to have a very good massage therapist that would start out very slow and easy. She would gradually add intensity, which in no way was causing pain and actually felt real good. The slow gradual increase in intensity she could begin to feel knots in the muscles and the linear striations in the muscles, which typically would typically have a easy seperation due to pressure. Mine (and others that she has done with CFS) have a stickness between the striations. I don't remember exactly what her words were, but this is close. I haven't been able to afford to see her in years, even though she was very reasonable ($45 an hour or $160 for 4 1 hour sessions).

The cramps that I get came along way after these massages. I've always wondered if something was going on with the muscles or the lack of using them was the cause of the stickyness or thickness the therapist felt. I have felt quite often that the effort to move most all of my muscles took way more energy than they used to take a few years ago. This could surely lead to quicker onset of fatigue. Could it have an impact on PEM?

Every doctor that I have ever tried to explain this to took the "That's impossibble and you are imagining it", except for Dr. Black at Hunter Hopkins Center. We did every lab possible, as usual it was normal. We did not do a biopsy of course. I do believe that there will have to be spinal fluid samples and biopsies done if we are ever to find a cause and a cure for this disease. Bloodwork alone will never tie all the the complicated elements to this disease together.
 

Don Quichotte

Don Quichotte
Messages
97
This may be a stupid question, but while reading researchers explain how inactivity leads to a vicious cycle of fatigue and pain/symptoms, I haven't actually seen them cite published evidence that this is true - is there any? I've seen lots of assertions but no concrete evidence. There's some evidence that it plays a role in chronic pain but I've seen nothing that could explain chronic pain completely (or even substantially).

If there is any evidence, could someone point me to it. Thanks.

There are no stupid questions. Only stupid answers. Many times there are no simple answers.

You may find this interesting.

http://www.biomedcentral.com/content/pdf/1471-2393-12-30.pdf

BMC Pregnancy Childbirth. 2012 Apr 17;12(1):30. [Epub ahead of print]
Pregnancy related back pain, is it related to aerobic fitness? A longitudinal cohort study.
Thorell E, Kristiansson P.
Abstract
ABSTRACT:
BACKGROUND:
Low back pain with onset during pregnancy is common and approximately one out of three women have disabling pain. The pathogenesis of the pain condition is uncertain and there is no information on the role of physical fitness. Whether poorer physical conditioning is a cause or effect of back pain is also disputed and information from prospective studies needed.
METHODS:
A cohort of pregnant women, recruited from maternal health care centers in central Sweden, were examined regarding estimated peak oxygen uptake by cycle ergometer test in early pregnancy, reported physical activity prior to pregnancy, basic characteristics, back pain during pregnancy and back pain postpartum.
RESULTS:
Back pain during the current pregnancy was reported by nearly 80% of the women. At the postpartum appointment this prevalence was 40%. No association was displayed between estimated peak oxygen uptake and incidence of back pain during and after pregnancy, adjusted for physical activity, back pain before present pregnancy, previous deliveries, age and weight. A significant inverse association was found between estimated peak oxygen uptake and back pain intensity during pregnancy and a direct association post partum, in a fully adjusted multiple linear regression analysis.
CONCLUSIONS:
Estimated peak oxygen uptake and reported physical activity in early pregnancy displayed no influence on the onset of subsequent back pain during or after pregnancy, where the time sequence support the hypothesis that poorer physical deconditioning is not a cause but a consequence of the back pain condition. The mechanism for the attenuating effect of increased oxygen uptake on back pain intensity is uncertain.
 

Don Quichotte

Don Quichotte
Messages
97
Am J Physiol Endocrinol Metab. 2012 Mar 6. [Epub ahead of print]
Mitochondrial signaling contributes to disuse muscle atrophy.
Powers SK, Wiggs MP, Duarte J, Zergeroglu AM, Demirel HA.
Source
1University of Florida.
Abstract
It is well established that long durations of bed rest, limb immobilization, or reduced activity in respiratory muscles during mechanical ventilation results in skeletal muscle atrophy in humans and other animals. The idea that mitochondrial damage/dysfunction contributes to disuse muscle atrophy originated over 40 years ago. These early studies were largely descriptive and did not provide unequivocal evidence that mitochondria play a primary role in disuse muscle atrophy. However, recent experiments have provided direct evidence connecting mitochondrial dysfunction to muscle atrophy. Numerous studies have described changes in mitochondria shape, number, and function in skeletal muscles exposed to prolonged periods of inactivity. Further, recent evidence indicates that increased mitochondrial ROS production plays a key signaling role in both immobilization-induced limb muscle atrophy and diaphragmatic atrophy occurring during prolonged mechanical ventilation. Moreover, new evidence reveals that during denervation-induced muscle atrophy, increased mitochondrial fragmentation due to fission is a required signaling event that activates the AMPK-FoxO3 signaling axis, which induces the expression of atrophy genes, protein breakdown, and ultimately, muscle atrophy. Collectively, these findings highlight the importance of future research to better understand the mitochondrial signaling mechanisms that contribute to disuse muscle atrophy and to develop novel therapeutic interventions for prevention of inactivity-induced skeletal muscle atrophy.

http://www.plosone.org/article/info:doi%2F10.1371%2Fjournal.pone.0006518


This is an interesting and quite comprehensive discussion of the potential risks and benefits of different forms of exercise (or lack of exercise) in different medical conditions.

http://brain.oxfordjournals.org/content/131/11/2809.long

Exercise (amount, type, duration) and Rest/limitations of activity are serious medical interventions that should be given in the right dose and combination, taking into account risk/benefit ratio for each specific patient and condition.

This was taken very seriously by Hippocrates (who lay the foundations for modern medicine, although unfortunately some were abandoned along the way...).

it is obvious that we must know well how the various, natural or imposed, forms of physical exercise influence, which ones of them contribute to the increase, and which ones to the reduction of the flesh, and, of course, not only these, but also the correct relationship between the physical exercise and the quantity of food, the individuals idiosyncrasy, his age, the seasons of the year, the wind changes, the location where the individual lives and the climatic conditions of the particular year.

while exercising, the well-being is deceptive, because, as it exceeds the normal boundaries, it is unstable, and since it does not last, the health of those who exercise does not improve, but it also deteriorates. This is the reason why it is soon necessary to stop this deceptive well-being, so that the body will re-start the food processing.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
In response to the original question, if you could access papers looking at muscle abnormalities/metabolism or reaction to exercise in ME/CFS patients by authors such as Fulle, Jammes, Lane etc, they usually list standard references on deconditioning and then discuss why they don't believe deconditioning is likely to apply in the majority of cases.

Dolphin's 'Reporting of Harms' paper has a number of such papers referenced :

http://www.ncf-net.org/library/Reporting of Harms.pdf
 

oceanblue

Guest
Messages
1,383
Location
UK
There are no stupid questions. Only stupid answers. Many times there are no simple answers.

You may find this interesting.
Pregnancy related back pain, is it related to aerobic fitness? A longitudinal cohort study

...Low back pain with onset during pregnancy is common and approximately one out of three women have disabling pain. The pathogenesis of the pain condition is uncertain and there is no information on the role of physical fitness. Whether poorer physical conditioning is a cause or effect of back pain is also disputed and information from prospective studies needed.
..
CONCLUSIONS:
Estimated peak oxygen uptake and reported physical activity in early pregnancy displayed no influence on the onset of subsequent back pain during or after pregnancy, where the time sequence support the hypothesis that poorer physical deconditioning is not a cause but a consequence of the back pain condition. The mechanism for the attenuating effect of increased oxygen uptake on back pain intensity is uncertain.
That's very interesting, DQ, thank you.

I also found this:

Physical inactivity and cognitive functioning: results from bed rest studies

Abstract
In addition to multiple health benefits, participation in physical activity can enhance cognitive functioning. Less clear is how reducing physical activity levels affects cognition, an issue potentially addressed by bed rest studies having included cognitive tests. Detailed and reviewed here are 17 such studies, featuring 251 subjects, bed rest for 770 days, and tests of cognition ranging from reaction time to executive functions. The reported effects of bed rest on cognitive performance vary considerably, from a generally expected worsening to an improvement. Practice effects could be implicated in the performance improvements, and reports of worsening are often of limited interpretability or the results were not replicated. Any cognitive effects of bed rest thus remain to be established. Detrimental effects could influence the in-progress plans for human spaceflights to Mars (simulated by bed rest), and have implications for medical conditions promoting inactivity and lifestyles that are largely sedentary.
----

Yet cognitive problems are very common in CFS (Jason argues they should be a mandatory part of any case definition, and I agree, but then I would as I have majore problems with cognitive fatigue).
 

oceanblue

Guest
Messages
1,383
Location
UK
In response to the original question, if you could access papers looking at muscle abnormalities/metabolism or reaction to exercise in ME/CFS patients by authors such as Fulle, Jammes, Lane etc, they usually list standard references on deconditioning and then discuss why they don't believe deconditioning is likely to apply in the majority of cases.

Dolphin's 'Reporting of Harms' paper has a number of such papers referenced :

http://www.ncf-net.org/library/Reporting of Harms.pdf
Hi Marco
Thanks, but I'm a bit confused (see earlier comment about cognitive problems...). Should I look in that paper for the Fulle, James etc refs, or does it directly list the standard references on decon? It's quite a big paper to navigate so I'd appreciated some clues.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Hi Marco
Thanks, but I'm a bit confused (see earlier comment about cognitive problems...). Should I look in that paper for the Fulle, James etc refs, or does it directly list the standard references on decon? It's quite a big paper to navigate so I'd appreciated some clues.

Sorry Oceanblue

I'm afraid there's no quick reference that I'm aware of. I've come across reference to standard deconditioning references while reading these papers but although I bookmark papers it would take me quite a while to track them down.

Dolphin's paper has quite a few references that may be useful which should be fairly evident from the titles and its a fuller list than I could put together.

Sorry I can't be any more help than that.