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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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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. OverTheHills

    OverTheHills

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    Hello

    I just did my VO2Max/AT test two days ago and I'm still deep deep in my PEM.

    The swollen gland and killer one sided sinus pain with nausea (I wonder sometimes if thats an atypical migraine) hit quickly then 24 hours later the rest of it started.... my heart rate hasn't stabilised yet (and normally mine is really good because a small dose of propanolol works so well for me) . Normal activities of daily living (like a single flight of stairs) are sending it racing/ attacks of mild breathlessness or air hunger. Also getting random lactic acid feelings particularly in my arms (in response to picking up a shopping bag).

    Of course now I'm feeling really stupid and wondering why I didn't insist we stop once I hit AT. Stupid stupid stupid. In my defence I was somewhat distracted because we were having a lot of quite big earthquakes that day.Not while I was actually on the treadmill I'm glad to say.

    My AT was pretty normal (lucky me) which explains perhaps why I can function a few hours a day with my POTs under control and if I only do sedentary activities (not too many stairs, walk slowly on the level and avoid any steep streets). I'll post again once I'm through the PEM and start HR monitoring in case anyone is interested.

    OTH
     
    Mij, SOC, Little Bluestem and 3 others like this.
  2. Artstu

    Artstu Senior Member

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    You're never going to make gains without constantly pushing your limits on an almost daily basis. I'm lucky to be in tune with my body, so can usually know what is and isn't enough. You're looking at making very small gains over a number of years if you're anything like me, perhaps 4 years to only double your current capabilities.
     
  3. taniaaust1

    taniaaust1

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    My heart rate gets into the normal persons red hardcore training area just from putting my clothes on ,so that put me off of trying to monitor myself further as I think Im always in that red area when Im up doing anything at all. It would be impossible for me to stay under unless I wasnt leaving my bed.

    I think that is why my current supplements arent helping. The were helping a lot before I moved house and due to that move (and loosing my home support due to slow tranfer over of agencies) crashed to a new level, since then I cant notice the supplements which had been helping me slowly to improve, I cant now notice them doing a thing. I think its cause Im constantly going over what I should be so they arent even being given a chance to help.

    By the time Ive got enough home support at the level Im at now, I'll probably have an even lower baseline as Ive been in a constant slow decline due to it all since start of the year.
     
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    In my experience the opposite is true. I never make any gains if I keep pushing myself. My theory/understanding is that the overexertion leads to hyperlactaemia, which causes various damaging downstream effects including perpetuation of autoimmunity.

    Most us pushed ourselves daily until we realised that it was keeping us ill and/or making us worse, and that to stabilise or improve we had to pace and rest.
     
  5. Mij

    Mij Senior Member

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    This is simply the opposite of what my ME specialist advised me 22yrs ago. He told me that when we start to feel improved, to do NOTHING., and practice the habit of doing small amounts with adequate rest in between activities I did not follow his advice so much at first because I wasn't informed too much about ME and it was making me worse.

    What you are advising is harmful in the long run. I'm not sure what you mean by "4 years to double you current capabilities", this illness is about managing your energy wisely or you will be worse long term.
     
    Ruthie24, MeSci and Valentijn like this.
  6. bertiedog

    bertiedog Senior Member

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    I was very interested in the chart that was posted, thanks for that. For me just going for a gentle walk on the flat with my dog takes my hr to 120-130 so no wonder I cannot do more than 20 minutes before getting exhausted. This hasn't changed in 13 years since finally crashing. I should add that I am 65 years old so that hr is way too high despite a low dose betablocker and some Florinef on some days (cannot tolerate it every day).

    Pam
     
  7. Artstu

    Artstu Senior Member

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    I agree with what you're saying up to a point, but it is possible to make improvements in your fitness as long as you know when it is OK to push and know when it is wise to rest. I don't always get it right, I'm currently going backwards. Now waiting for some sub zero weather to ramp up my walking again.
     
  8. Artstu

    Artstu Senior Member

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    Double your capabilities, is simply do double what you could previously, in my case that's walk or cycle twice as far as I used to be able to.
     
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think I finally got the hang of what I could and couldn't do after about 17 years of illness and over-exertion, which landed me in hospital for 4 days in 2010 in a near-life-threatening state, plus producing permanent dental damage and a fracture due to mineral loss.

    Whilst I have not increased my energy levels (and do not expect this to occur until careful pacing, diet and supplements have significantly reduced my autoimmune activity, which I believe is the cause of my mitochondrial abnormality/ies that lead to hyperlactaemia), I have shed about 8 kg of excess fat and regained a substantial amount of muscle tone, making movement easier and more efficient. I have rediscovered muscles that I had forgotten I had!

    This was not through exercise, but through the changes outlined above, and the improvements were easy and surprisingly and pleasingly quick - a matter of months.

    My simple rule re exertion is now - if it hurts or feels tired, STOP. I just wish I could do this more, but life gets in the way. It sure does help.
     
    rosie26 likes this.
  10. Mij

    Mij Senior Member

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    I understand that you are speaking from your own experience but you are giving advice. This illness is not about deconditioning or pushing your limits in order to make gains.
     
    MeSci likes this.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Three questions occur to me.

    1. Have you been diagnosed with ME/CFS?
    2. Are you sure you are not fooling yourself? We are very prone to this, due to our strong desire to get better, and often also pressure from others
    3. Do you know that people who think they are improving through exercise often have serious relapses, sometimes after a period of years?
    I don't want to sound negative, but it always concerns me when people say that they have ME and are trying to treat it with exercise of any kind, as evidence shows that this is almost always unwise.

    I would love to be able to cycle again, and thought at one time this year that it was a realistic possibility in the near future, but soon had to abandon the idea again, at least in the short term. I haven't given up hope of being able to do it eventually.
     
    Mij likes this.
  12. Artstu

    Artstu Senior Member

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    That's the cost to me for exercising in the way I do, at times there is simply nothing left for anything else, I have a million and one things I really need to do, but never have the energy to do them. Walking and cycling fitness doesn't necessarily transfer into an improved ability to do other things, and I'm not sure it actually improves the illness, it just makes me very good at walking and cycling, and that brings a sense of achievement to my life, and I do also get a huge amount of pleasure from being out on my electric bike, and that helps with my mood. So I'm pretty fit but still chronically ill.
     
  13. Artstu

    Artstu Senior Member

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    1. Yes
    1. I don't think so, I've made serious gains in my physical ability
    1. if that does happen no one can take away the experiences I've had recently, better to live than sit at home scared to exercise.
    only time will tell, I have no fear of what may or may not happen in the future.

    I never thought I'd ride a bike again, I'm astounded by just how far and fast an electric bike can take me, Have you tried one?
     
  14. Artstu

    Artstu Senior Member

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    Certainly it is true that just deconditioning may not be a big factor, but if you're inactive you are going to lose muscle and ability. Just because we're ill IMO doesn't mean we can't get the same benefits from exercise that healthy people get from exercise. I'm not suggesting it is a cure to our illness, but being as fit as you can be does help.
     
  15. Mij

    Mij Senior Member

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    We can benefit from exercise but one has to reach a level of improvement with close monitoring, it should also be kept at low intensity with adequate rest in between. It's the cumulative damage over the long term that you may not be aware of, I know this from experience.
     
    Artstu likes this.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Due to my unpredictable balance I have considered getting an electrically-assisted tricycle. I know from my balance problems that I would very rarely be able to balance for long on a bike, including a motorbike. Another benefit of a tricycle is the ability to sit and rest on it when tired. But I don't have the money to buy one. I may do in the future, if it appears a worthwhile investment for getting around when and where I need to.

    But exercise for the sake of it would take a lot of energy that I need for essential things such as shopping, cooking and self-employed work. I'm not inactive at all. I just do things at a pace and intensity dictated by my physical limitations.

    Your later post:

    Unfortunately that is exactly what it does do. It's one of the defining characteristics of ME.

    As I said earlier, I have improved my muscle tone significantly, but not through exercise. This has improved the way I move, my strength and my balance, and it feels great to have working muscles again.

    Do you use any physiological measurements to guide your exercise, such as heart rate?
     
    Valentijn likes this.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I've been thinking some more about this so will quickly put my thoughts down before they fall out of my brain.

    I do think that it's possible for people with ME to increase muscle mass. I even think that this can be done through physical activity. I think I did it myself in the early days, getting a walk up a steep hill into town down from about half an hour to 15 minutes.

    However, my recent dietary changes plus supplements have shown me that it can also be achieved this way rather than through activity, and I am pretty sure that it's safer, as it doesn't increase lactate levels (indeed it is aimed at reducing them).

    Increasing muscle mass will mean that there are more muscle fibres available to recruit to a given task, thus it may increase the total lactate threshold.

    What it won't do is undo the underlying biochemical abnormality in the muscle cells, and even the new muscle fibres will have this abnormality. So each muscle cell will still switch to anaerobic energy production too quickly, increasing lactate levels, which then have to be dealt with by the body, notably the liver.

    Re exertion being easier in cooler weather, my theory on this is that it is due to our cells tending to produce heat rather than the chemical energy (ATP) needed to power muscles, nerves, etc. There are numerous proteins that can act as 'uncouplers' which disconnect cell respiration from ATP production. Hibernating animals use the process to keep warm in winter, when it is often called 'non-shivering thermogenesis'.

    Not sure whether lactate fits into this or not.
     
    rosie26 and Artstu like this.
  18. Lynn

    Lynn Senior Member

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    I have been disabled with ME/CFS for 12 years. Things are starting to change for me but I have hit a road block. I have been taking high doses of vitamin B-1 (1500 mg) for the past 7 weeks. I definitely feel better and want to do more. I think the biggest thing it helped with was orthostatic intolerance. I can sit and stand for much longer periods of time now without feeling like I was dizzy or just needed to lay down.

    I have many good days and if I did nothing with those days I would probably have more good days. But of course as soon as I started feeling better with more energy, I wanted to do more and I wanted to take it slow. So I joined a health club that has a Silver Sneakers program. Silver Sneakers is designed to help keep senior citizens fit and mobile. the average age in the class is probably about 70 (I am 53). It is kind of like chair yoga and does not include any aerobics. The classes are 45 minutes long and I am able to do the classes without perceiving any strong exertion.

    After each class I feel hopeful that I am finally going to lead a better quality of life. But then about 36 hours later I start to feel that ME/CFS dead weight on my shoulders, my brain becomes disengaged, and I feel that I need to lay prone.

    I am going to try it one more time and take my heart rate monitor with me. But I don't really think I am over exerting myself in the moment. I think it is probably the length of the classes. I guess I just have to decide if I am willing to leave the class early. It feels kind of like giving up to do so.

    Oh, on another note about the B-1. I have a recumbent bike that I use once in a while and monitor my heart rate. I make sure I am not going above 100 BPM to keep in my range. I usually do about 10 minutes on it. It used to be a fairly gentle exercise keeping within that heart rate. Since taking the B-1, I have noticed that it feels like I have to work much harder to get my heart rate up to 100. It feels like I am exercising pretty hard. So something has changes there as well, but I am not sure what.

    If anyone has any more advice on building up endurance and avoiding PEM, I would love to hear it.

    Lynn
     
  19. Artstu

    Artstu Senior Member

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    Oddly for me I seem to be able to switch something on in my body with intense 80% ish of max h/r. Even at times when I know I really shouldn't be out on the bike. Nothing else gets me going in the same way, if I do a walk when feeling weary I just end up getting more weary.
     
  20. SOC

    SOC Senior Member

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    I take it you don't have PENE?
     

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