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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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My experience with exercise testing -- the advantages and disadvantages

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by SOC, Jun 29, 2013.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Stopping doing something that causes harm is not giving up - it's being rational and realistic. The fact that exercise can cause harm goes against norms that everyone has absorbed and are even ingrained in sayings like 'hard work never hurt anyone'.

    Pacing and resting take a huge amount of willpower, and some people find that dietary changes do too. We are constantly fighting the urge to do more. That is not giving up!

    To avoid PEM you need to reduce activity, pace it carefully, go more slowly than you would like to, switch between different types of activity (e.g. from using your arms to using your legs to using your brain), and resting any part of your body - or your brain - when they feel fatigued. It's hard, and it never stops being hard, but it does get a bit more instinctive with time.

    Many of us also find that diet and supplements help, and you can find info on these in the relevant forums. I have found that with the right diet and supplements my excess fat has been replaced by muscle, so that I am stronger and can do more.
    Mij, Artstu and Valentijn like this.
  2. Artstu

    Artstu Senior Member

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    Not always, I can get away with a few months of increased activity before it catches up with me.
  3. Artstu

    Artstu Senior Member

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    You're making it sound like the fat turned into muscle, surely you can't gain muscle size without working it, unless the supplements you're taking are same ones as used by body builders?
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I have noticed that if I continue with exertion, the PEM/PENE often does not appear until a couple of days after I stop. It seems as though continued exertion somehow delays the adverse effects. But it can't prevent them, and I think that the longer you continue pushing the worse the after-effects eventually are.

    A stark example of this was during one of the recent cold winters. As I was very poor, I had to rely on scavenged wood from the fields for heating. I usually went out scavenging about every 3 days. But when it was seriously cold, I was having to do it more often. Once I did it for 3 days in a row, then was wiped out for a week - really ill and could hardly do anything. A few months later I was seriously ill with near-life-threatening hyponatraemia (low blood salt) which I am sure was due to further over-exertion when I had already weakened my body's ability to withstand it.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    What actually seemed to happen was that I lost the fat first. It started falling off effortlessly when I cut out gluten, and continued when I reduced grains and sugar.

    I was also taking l-glutamine to help to heal my gut. I know this is also used by athletes or body builders.

    But I don't think I noticed the muscles strengthening until I started another supplement containing acetyl-l-carnitine and alpha lipoic acid.

    I have not done any dedicated exercise at all, as I am active doing everyday tasks. This includes growing and selling plants, which can be quite strenuous - too strenuous in fact.

    All I have done is to use the muscles more during these, such as when walking, bending, etc. They feel so good I like the feeling of using them. So, for example, when I am washing up, I sometimes test how much I can tighten my gluteal muscles and abs, and lean forwards, backwards and sideways as I kneel on a chair (which I do to rest my legs). When I bend to pick things up, I try using muscles other than those in my legs. When I walk I find that I can use my pelvic muscles more, taking some of the strain off my knee and calf muscles so that they don't tire as quickly. When I wake up in the morning I now stretch in all directions before getting up, which I used to have to be very careful about as I sometimes got cramp, as well as just not having much flexibility.

    That's all!
    GracieJ and Artstu like this.
  6. madietodd

    madietodd Senior Member

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    SOC, I'm confused about the tests at Dr. Rey's and Dr. Sol's, both in Miami.

    Do they use different tests? Did Dr. Rey 'send' you over Dr. Sol? Does Dr. Rey offer an exercise test that's easy?

    Re exercising, I joined a gym about 2 years ago. I focused on the weight circuit, low weights and low reps, hoping for very gradual increases. I went for 3 months, and never could increase either the weight or the reps.
    GracieJ likes this.
  7. SOC

    SOC Moderator and Senior Member

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    That does not sound like PENE. This is what PENE is:
    I don't think catching up with you after a few months qualifies as "delayed by hours or days".

    Have you read the International Consensus Criteria for Myalgic Encephalomyelitis? Here is an easy summary. You may also want to read the sections on exercise in the ME/CFS Primer for Clinical Practitioners.

    The type of exercise you are advising is definitely NOT recommended for ME/CFS patients. In fact, it is contraindicated.

    People with ME are advised to stay under our own anaerobic threshold, which is significantly lower than that of healthy people. The fact that you can exercise for extended periods of time at and above the anaerobic threshold for healthy people suggests that you do not have ME. Since you are in the UK, it's possible that you were diagnosed using the Oxford Criteria for CFS, which is a very, very broad definition which includes many fatiguing conditions. Most people here have the much more serious illnesses ME (defined by the ICC) or ME/CFS (defined by the CCC). This only matters because you are advising exercise for people with ME that is not only ill-advised, but dangerous for us.

    It's wonderful that you are able to exercise the way you do. I'm glad that you can do it and that it is helping you. That does not mean that your exercise philosophy is at all suitable for people with ME.
    Valentijn likes this.
  8. SOC

    SOC Moderator and Senior Member

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    Dr Sol works along with Drs Klimas and Rey. We had to make a separate appointment for the exercise testing with Dr Sol, but it was done in the same office immediately after our appointments with Dr Rey.

    Your exercise plan at the gym seems to be the kind of exercise that's suggested for us. It's discouraging when you can't make progress despite the work, isn't it?
    madietodd likes this.
  9. Artstu

    Artstu Senior Member

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    SOC I agree almost entirely with what you are saying, I'm 99.9% sure I have ME/CFS, right now I have all the symptoms you highlight for PENE, I guess my over active period has finally caught up with me. I'd have thought anyone with the illness can achieve what I do with determination and will, I'm prepared to take the risk, it's up to each one of us to live our restricted lives as we see fit.
    I've also met someone else who pushes himself beyond what I do to be able to continue walking with his walking group, so I'm certainly not unique.

    I note that exercise is advised in one of your links

  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hmm...peddling (defined here)

    could certainly help pay the bills, but I think you would need a cycle that actually goes somewhere in order to do it. :D
  11. Artstu

    Artstu Senior Member

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    SOC yes I spotted that typo too.
  12. Purple

    Purple Bundle of purpliness

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    Sadly, you are mistaken. You may just be lucky - determination and willpower has little to do with getting better, but it can make many determined people with strong willpower much, much worse. People are not living restricted lives because 'they see fit' to do so, they live restricted lives because they have no choice. And some because they have been made permanently worse by exercise or using their determination and willpower to do as much as they can while damaging their bodies.

    The exercise advice you quoted is inapplicable to every single severe ME patient (i.e. at least a quarter of PWME) and most moderate PWME by ICC (moderate being housebound) so it really only applies to people with the mild forms of the disease - if at all.
    Sushi, SOC and Valentijn like this.
  13. Mij

    Mij Senior Member

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    Actually I don't even think it applies fo "mild forms" of ME. I was a miliish form at one time and continued to exercise (running of all things!!) and progressively got worse (and I believe stayed worse). Ohhhhh if I could go back and listen to what my ME doc advised me many years ago I'd be better off today.

    Artstu, determination and will power may help you psychologically but it won't physically long term if you have ME. Sorry to say.
    MeSci, SOC, Purple and 1 other person like this.
  14. Purple

    Purple Bundle of purpliness

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    Yes, of course, I didn't express myself very well. Even those with mild forms cannot increase or maintain activity that is beyond their threshold. Doing more than the illness allows leads to deterioration, as is the hallmark of ME. (though there can be fluctuations and people who do improve can start doing more - but it is the improvement in the illness that allows them to do more; not doing more leading improvement in the illness).

    Sorry you are worse now through exercise :(
    MeSci and Valentijn like this.
  15. SOC

    SOC Moderator and Senior Member

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    The exercise advised does NOT include aerobic exercise at or above the patient's anaerobic threshold. If you go back and read carefully you will see it says "leisurely paced" and "5-15 minutes a day" -- and that is only for higher functioning patients. Those of us who can, do some form of appropriate exercise such as leisurely walking, or supine strengthening exercises. THAT is the exercise appropriate for people with ME.

    I prefer to use my determination and will power to follow a demanding treatment regimen which allowed me to go from bedbound to working part-time and doing basic self-care including necessary general housework. I find that a much more intelligent, mature, and responsible use of my energy than exercising to exhaustion and then laying around on the couch the rest of the time.
    Sushi, Mij, MeSci and 2 others like this.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    We know you're not unique, Artstu - that's why we know what happens when you push yourself, and many of us have had to watch and/or experience the virtual car crash that follows, and it is distressing. It's a major reason why I left another forum system - people kept following the psychoquacks' advice, or just giving in to their urges to do more, and we knew what was going to happen. We told them, but they wouldn't listen. I had to do a virtual equivalent of covering my eyes or hiding behind the sofa. Finally I had had enough of this trauma and left them to it.

    I wish there had been people to warn me before I made myself worse. I'm still climbing back out of that hole years later.
    SOC likes this.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    To be fair to Artstu I think he(?) was saying that people choose HOW to live within our restricted lives rather than that we choose to have restricted lives. But it looks as though Artstu has not in fact been living within the restrictions, and has effectively overspent and gone into the red energy-wise.

    So now is the time to rest, rest, and rest again. Give your body what it needs - the right diet and supplements, and rest. That will hopefully minimise any damage done.
    Purple likes this.
  18. Artstu

    Artstu Senior Member

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    That's not what I said at all.
  19. Artstu

    Artstu Senior Member

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    I'm not here knocking how people deal with their illness, we all make choices in how we use our limited energy, so if that comment is aimed at me I'd appreciate it if you gave me a little more respect.

    Time for me to bow out of this now, clearly you all know best.
  20. Artstu

    Artstu Senior Member

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    I've not suggested it will make me better, I'm just pointing out what it is possible to achieve. However it would seem you've all seen it all before, and will be only too glad to say I told you so if I end up going backwards.

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