Ian (& others) - article re PEM, anaerobic threshold & exercise

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Nov 21, 2013.

  1. mbofov

    mbofov Active Member

    Here's an extremely interesting article from the CFIDS Association of America about post-exertional malaise, how it happens and some methods of coping: http://www.cfids.org/cfidslink/2010/100604.asp

    I think this is the crucial difference between FM and CFS - how we respond to exercise. According to the article, people with CFS have a much lower anaerobic threshold than others, which greatly lessens their tolerance for exercise and causes the severe post-exertion exhaustion after rather minimal exertion. If a person with CFS doesn't understand this basic physiology, they will be pushed to exercise when they shouldn't.

    The article talks about "safe" methods of exercising but they are really quite limited, given the constraints of CFS. And it mentions the difficulty of "exercising" separately from basic functions needed to survive, how for CFS, all exertion (washing one's hair, doing the dishes, reading, etc.) is exercise.

    Anyways, the article made me feel better, to finally begin to understand what happens and how it happens when I crash. I didn't realize I was carrying a load of self-imposed guilt for not being able to do more.

  2. Soul*

    Soul* Well-Known Member

    Mary I remember reading about that too. I did get a heartrate monitor back then but it just gives too much pressure to wear all day for me. I put in a treshold and stopped every time the alarm went of to make sure I wouldn't get over it. Have used it for a few weeks but even just wearing a cardigan with a zipper upsets the nerve system so the heart rate monitor has been to strainous to wear. Still it does make sense and I have learned to pace better.
  3. mbofov

    mbofov Active Member

    That makes sense, Soul. Also, the idea of doing something for 2 minutes and then resting, I can't live my life that way. But I do think the monitor could provide useful information, although I can see how it could be difficult to wear it all the time (and probably irritating too to keep hearing the alarm go off!)

    My problem would be how to determine my anaerobic threshold. It sounds like if you don't have a stress test done, you just guess what it is?

    But an explanation of crashing - how it happens - is just fascinating to me because I have wondered for so long what the heck happens, when I'll be feeling good, but if I don't stop what I'm doing even if I still have more energy (or feel like I do), I'm in big trouble. And no one I know can comprehend it. My family is nice to me, I'm lucky that way, but no one understands what happens to me. So now I have some sort of explanation and I really like having that!

  4. TigerLilea

    TigerLilea Active Member

    I push myself until I crash and then I start over again once I regain my energy. I've tried the pacing, and, like you, Mary, it doesn't work for me. I've tried doing total rest at the suggestion of my doctor, however, after four months I couldn't think anymore from so much enforced rest so my doctor told me to scrap that idea. Life is too short to waste so I just push and crash, push and crash, and will continue to do so until there is a cure, or at least something to help with symptom relief.
  5. IanH

    IanH Active Member

    I do not have any problem with Jennifer Spotila's article, it has been around for while. It is good advice.

    I have the following comments about your comparison to FM. Fibromyalgia is a set of symptoms, as is CFS. The overlap between the two "concepts" is great and to compare the two "distinctly" is not possible despite the fact that some scientists try to, they create differences dependent on their biased experimentation. Also the diagnostics of the two is poor to say the least. There are many families whose members have diagnoses of both within the immediate family. All the members of the families have an underlying disease which expresses itself in different ways depending on the individuals genetic makeup and their life history. Some get a body wide painful, stiffening and fatiguing syndrome others get a fatiguing syndrome initiated by over-exertion others get the most severe nauseating and fatiguing syndrome on exposure to environmental toxins AND some get a mixture of all this. Of course within each of these concepts there are many other symptoms and recently clearer signs but signs/physiology which shows a difference is based on poor experimental constructs. To add to that some people are possibly miss diagnosed especially in Britain.

    Some people will have more difficulty than others adjusting their activity for health. Whether they have been diagnosed with FM, ME/CFS or MCS.

    For example it took me 10 years before I could climb the stairs in my home without collapsing at the top of them with frightening tachycardia and exhaustion. It also took me 10 years to reduce the morning "paralysis" so that I could walk to the toilet without holding onto the wall to get there (10 meters). It took over 10 years to be able to drive safely without the risk of falling asleep or not being able to move my foot off the accelerator or being able to hold the steering wheel without incredible muscle cramps developing in my forearms and wrists.

    It took five years for me to be able to walk to the end of my street without sometimes my wife coming to get me in the car. I once helped move a couch in my daughters house over-exerting myself, I ended up in hospital with exhaustion, severe vertigo and unbelievable tachycardia.

    I still suffer from brain fog but not as much as when I had to give up my work because I could not understand what people were saying to me. I could not reply to them sensibly making me look incompetent. I could no longer read a scientific paper and retain anything from it - Nothing! After eight years of all of this I considered suicide but then my daughter and wife came down with this illness and I found a new purpose.

    At this stage of my description, what is my diagnosis?

    If you want to define a disease on the basis of PEM only then go ahead but I believe you are barking up the wrong tree and you will get people who have historically been diagnosed with FM and MCS. I know some people get severe PEM after even slight exertion and some get PEM after quite a lot of exertion. Some who used to get PEM after only slight exertion come to tolerate more exertion with time and gradually increased activity levels. That is not to say I agree with the British approach to ME, it is wrong! To complicate matters further some get PEM (post exposure malaise) after being exposed to household chemicals. The symptoms are often indistinguishable.

    While PEM or more strictly VO2max after a standardized exertion test can be used to help "confirm" that people have a serious underlying disease affecting the neuro-muscular energetics. What this does is define a subset of people with "ME/CFS". Not too accurately I think you will find in the future. The anaerobic/aerobic distinction is arbitrary and borrowed from sports physiology.
    Last edited: Nov 21, 2013
  6. Soul*

    Soul* Well-Known Member

    Mary I don't remember exactly what the number was but there is some information about tresholds with ME/CFS, you can just start lower if you feel your are worse then general, or keep that up for a while and if you are certain that that is a treshold you can safely keep you can up it a little to see where you meet your personal treshold that you shouldn't go over. What it did for me is that I started to recognize the signals of the body that I before overlooked. So before the alarm would go of I usually would already have recognized that I 'should' take a few minutes break.

    It's my stubborness that makes me push on and makes me want to finish things first and it's annoying to have to stop everytime but usually it only takes a minute or so since you stop BEFORE you went over your treshold, so only your heartrate has to drop a little. Also it makes you aware of how sometimes it is just the way we do things that makes us go over the treshhold and if we find another way to do things we CAN do it without exhausting.

    Though it may seem the opposite I have found that crashing takes away WAY WAY more of my life then pacing. When I pace I am able to stay emotionally balanced and I won't spend as much time suffering from a crash. I'll have a steady basis to build on and it gives me more room to do the things that matter most to me. So to me pacing is a much more humane way of living and gives me way more chances to get the most out of my life. And sure, every now and then I DO chose to do things that I know that will make me crash but then I'm prepared for that and bare the consequences in a way more stable way and it doesn't knock me of my feet emotionally.
  7. mbofov

    mbofov Active Member

    Hi Tigerlilea - well, I do pace myself, but not in 2-minute increments! I don't know how anyone can do that. I've found that if I pretty much stick to doing no more than 3 to 4 hours of light activity a day, I generally don't crash the next day. So I do rest a lot - my day stops at noon or 1:00. But no way could I do total rest! And I don't always gauge it correctly and do crash the next day. The explanation about the anaerobic threshold did make me feel better, knowing a physiological basis for having to curtail my activity. But I am recovering more quickly from crashes. Now I'm trying to figure out how that works in the overall scheme of things!

  8. mbofov

    mbofov Active Member

    I totally agree there are poor diagnostics for these illnesses. Because research has been so sorely lacking, we are hard-pressed to distinguish if we are dealing with several different illnesses. I think definitions do matter. And I agree, there are varying levels of PEM. My PEM was much worse several years ago but it has the same characteristics - exhaustion post-exertion, lengthy time to recover, complete inactivity required to recover. It's a milder version.

    So while having MCS will cause horrible symptoms perhaps similar to PEM, they may not be the same thing as the PEM evidenced by the VO2max test. It seems then that the test might be even more important to determine if someone with MCS is dealing with the same thing as someone with CFS. If they are dealing with a different problem, we need to know that. I have a suspicion that someone with MCS is dealing with different issues than someone with CFS, but of course I could be wrong. But I think the VO2max test could tell us whether they are the same or not.

    So I think this test is very important, whether to distinguish a subset of people with CFS or to actually demonstrate the defining characteristic of CFS. In other words, I don't know if everyone who's diagnosed with ME/CFS has the same thing. We don't have a homogenous definition. Many people who have been diagnosed with CFS actually have lyme. So we have a lot of sick people and I think it's important to differentiate as much as possible between them, if we are to have any hope of coming up with causes and appropriate treatment.

  9. mbofov

    mbofov Active Member

    Hi Soul - yeah, I do pace myself. It is more humane. It's just that the article talked about doing things in 2 minute increments and that is just impossible., I think will get a heart rate monitor and just try wearing it sometimes. It would be very interesting to actually see something happen to my heart rate that would indicate I should rest. I've often wished I had an energy gauge, like a gas tank gauge, which would tell me when to stop doing something. So I'm actually anxious to try it.

    Yes, like you, if I pace myself properly, I can do more. Crashes are so debilitating, physically and emotionally very draining.

  10. Soul*

    Soul* Well-Known Member

    Yeah, I'm with you, it is so much easier when you have a clear measure thingy that keeps track of when we cross the line. It's not that we don't want to pace but we don't want to pace unneccesarily and if the signals aren't clear either it feels like time goes to waste 'unlived' or time goes to waste trying to recover from just living...

    Though I do believe we do have an inate abbility to sense that but that we stopped listening along the way and started to trust on outside technology for everything because we have become so action and materialistic conscious and have lost our real sense of what matters most in life and what is natural living.

    I'll probably start wearing the meter again for a bit too. If it helps me to recognize the thresholds better it does make sense to at least keep at it every now and then.

    To be honest I haven't opened the article you refered to yet, I just recognized the threshold word :p Will take a look at it when I have a little more energy to focus.
  11. mbofov

    mbofov Active Member

    Soul - I looked at a lot of heart monitors on-line and most seem to have various problems. I don't want to have to wear a chest strap. Does yours work well? What brand is it and does it have a chest strap?

  12. Soul*

    Soul* Well-Known Member

    Mary I just got a cheap one since they all have issues, and yes mine is with a chest strap which is hard for me to wear too... But the way I was told is that the chest strap does a better job at registering then the pulse ones. It every now and then falls away and takes a while to start registering but it usually picks up again.
    I took so much time to investigate what was the best choice within my budget but even the more expensive ones have issues so I stopped searching and just went for what I could afford. Mine is a Cresta.
  13. mbofov

    mbofov Active Member

    Thanks, Soul. From what I read, the ones with the chest straps give better readings, but are a pain - c'est la vie! :)

  14. IanH

    IanH Active Member

    Mary, my point is that ME/CFS, MCS and FM are descriptions based on symptoms and are often not distinguishable at the biochemical/immunological level even though some of the symptoms can be quite different. Several studies have now shown that people with "full blown" MCS have ME/CFS at least they have the same immunological markers and at the moment there is no other way of defining ME/CFS (aside from the symptoms). Many people with MCS have PEM (post exertional malaise). The problem with MCS is that it is not a recognized diagnosis within medicine whereas FM is and ME almost is. (As far as many medical personnel are concerned MCS claimants are the most nutty). I have spent several years now talking with people who have family members with all three of these "conditions" (like in my own family) and I have no doubt these are all manifestations of the same underlying dysfunction. As I said in another post the underlying condition is an inflammatory disorder similar to depression (but definitely not a form of depression which is a nonesense). The variation in symptoms including the variations in degree are caused by genetic variations combined with life history factors such as trauma, diet, fitness health, infections history and gender.

    The VO2max test certainly identifies a group of people with ME/CFS however I cannot see how it will be definitive for ME/CFS which is so heterogeneous. Physiologists who have some involvement with ME, that I have spoken with say that the test may possibly fail in previously trained athletes who get ME/CFS who get few respiratory illnesses, however that it would succeed in differentiating in previously trained athletes who have been prone to respiratory infections. The reason for this is genetic. Their cytokine profiles in response to exercise are different. Some of these cytokines are involved both in the response to exercise and in ME/CFS. So what I am saying is that the test's discriminatory power will depend on the genetic/immune profile of the ME/CFS individual being tested. This will be revealed eventually once many independent trials have been completed. I would have wished it was going to be a nice simple definitive test but alas, I know it will not be. However it may discriminate enough people to give them a disorder name but I think it will need a new name (not ME/CFS.)