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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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    Please don't leave the forum, Artstu. I certainly have your best interests at heart and I think that most - maybe all - of us do. Some people are rightly concerned that others might emulate what you are doing and come to harm. With no little or no help from official sources it is left to us to help and learn from each other, and stop people from making the same mistakes as many of us did (myself included).

    Maybe best to think of some of the critical comments as a kind of 'tough love' or 'being cruel to be kind'. I hope that I have erred on the side of love and kindness and not been too cruel or tough! :)
    madietodd likes this.
  2. Artstu

    Artstu Senior Member

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    MeSci I'm not leaving the forum, just bowing out of what feels like an onslaught against me. Just had a cold bath, I can't believe how cold 17 deg C is, looks like I'll be needing some ice in the future :)
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    :eek: You sound like quite a masochist!
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Just came back to this thread after not looking at it for a while.

    I'll just add my voice to those saying "Be careful!" :eek:

    I pushed my body into collapse overnight 7 years ago and have never fully regained what I lost. I had felt fine while cycling, canoeing etc., had been exercising every day but not pushing as hard as I did this one week when a "sporty friend" was visiting.

    Interestingly, I had been cycling with a club for several years. I could never increase fitness and endurance the way the others did--even doing the same rides. My endurance level actually went down. I didn't know I had ME/CFS in those years. Now I understand why I could not increase fitness.

    It is fine to share your experience but please, don't make generalized statements like:


    People respond very differently to treatment and to exercise but this is almost "text book" poor advice for an ME/CFS patient and could really lead to a serious crash. I know from my own sad experience! :(

    Sushi
    Kati, MeSci, Valentijn and 1 other person like this.
  5. Artstu

    Artstu Senior Member

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    I'm not listening any more.



    [​IMG]
  6. Artstu

    Artstu Senior Member

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    I've got some ice for the next one :eek: brrr not looking forward to my next bath.....

    oh and I've just got back from a very pleasant hilly 14 mile bike ride........
  7. lnester7

    lnester7 Seven

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    I am still strugling, I feel sooooo well most of the time, and I walk (10 min) and I want to pull my eyeballs out of desperation. I have no clue what it is about excercise, I am working full time, I cook, Now I can stand for 2hours in a row cooking, I go shopping, socilized, I do not have much symptoms but all I have to do is to walk and BAM! down I go, it makes no sense! but I can go all day in short bouts of walking.

    Getting frsutrated here about excercise. By the way I am not trying to excercise per say, but I have to walk the Dog. So is a chore I have to do but for some reason is the one thing I still cannot do. (I can even bend over now)!!!.
  8. Artstu

    Artstu Senior Member

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    I'm the complete opposite @Inester7 , I find standing in one spot very tiring, 15 minutes max. You're clearly using all your energy elsewhere, if you do any activity often enough it becomes easier, my arms are very weak too.
  9. SOC

    SOC Moderator and Senior Member

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    I'm kinda in the same boat. I can do quite a few things in terms of work (tutoring) or around the house that I couldn't do a year ago, but walking any distance continuously is still a problem. More short spurts -- yes, that I can do, but increasing the continuous walking time is not working. For the moment I've decided to put my efforts into what's working and am waiting on working on continuous walking. Maybe I still need to do more healing before my body is ready for that.
    Artstu, have you been tested for POTS or other forms of OI? The more you tell us about what you can and can't do, the more it sounds like you might have some form of OI instead of, or in addition to, ME/CFS. It's pretty common in ME/CFS. Treatment can give a substantial increase in both functionality and quality of life.
  10. Artstu

    Artstu Senior Member

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    I looked into it when it was mentioned before, not sure who mentioned it, you I think sorry, although I haven't been tested, it just didn't fit with how my H/R responds to standing etc. I don't get close to passing out or anything like that, it just has a negative effect, so I'm always careful not to stand for long and take every opportunity to sit down.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Perhaps the majority of OI patient don't pass out or come close to it, and HR is not the main thing with OI but BP. I have OI and my HR does not rise upon standing but my systolic BP drops. I never come close to fainting but was diagnosed with OI by 3 different criteria on a tilt table test.

    Sushi
  12. SOC

    SOC Moderator and Senior Member

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    Yup. :) I said the same thing -- I don't have OI because I don't get close to passing out when standing, etc. I was wrong. I have delayed POTS, probably from low blood volume. Low blood volume can cause exactly the kind of symptoms you are describing.

    This is from the Treating Orthostatic Intolerance article here at PR:

    There is a Simple Test for Orthostatic Intolerance in the article. You can try it at home -- just make sure you have someone ready to catch you on the off-chance that you do collapse during the 30 minute standing test. Neither my daughter nor I collapsed during the test, but both of us did feel horrible by the end. Both of us have significantly low blood volume as subsequently diagnosed by a cardiologist.
    ahimsa, Valentijn and Artstu like this.
  13. Artstu

    Artstu Senior Member

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    OK thanks, I WILL follow this up now. I'll see if it is something my Doctors surgery do first.

    edit, can they treat low blood volume? and if so how?
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You can also easily do it at home...but have someone with you just in case. I used to do a shorter version at home regularly to check how I was doing. Most US pharmacies offer "specials" on a BP machine so that the end cost of one is very little. Getting one with a memory is really helpful so you can see the pattern.

    Sushi
    Artstu likes this.
  15. SOC

    SOC Moderator and Senior Member

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    The first thing most doctors try is to have you increase your salt and fluids because it's easy and cheap. They had me drinking at least 3 L of electrolyte drink daily. :eek: It helped, but it wasn't nearly enough.

    The next thing the doc will probably try is fludrocortisone. My daughter and I both take that. We also have to fluid load to compensate for getting dehydrated overnight -- 600 ml electrolyte drink immediately before bed and again immediately upon waking.

    Depending on the type of OI one has there are different additional treatments.
    ahimsa, taniaaust1 and Artstu like this.
  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I think even maintaining current fitness level is worthwhile. While deconditioning does not cause ME, I think it is possible for a person with ME to become deconditioned.
    Artstu likes this.
  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    As to walking, I found the key to increasing the distance that I could walk was walking more slowly. Perhaps I was staying below my anaerobic threshold by doing so.
    rosie26 and MeSci like this.
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I generally find that I can do more by being a tortoise instead of the hare that my brain tells me to be.

    I guess that means I am hare-brained and tortoise-bodied! :lol:
    Little Bluestem and SOC like this.
  19. rosie26

    rosie26 moderate ME

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    Walking slow, sure works. I am able to go further as well. When I have the heavy ME symptoms with the puffed exhaustion, my walking is incredibly slow, close to a shuffle.
    MeSci likes this.
  20. SOC

    SOC Moderator and Senior Member

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    I'm already walking at a slow stroll. That's one of the hard things I had to learn in the first few years of ME/CFS. I used to be such a hare -- walked fast, took stairs two at a time, never sat down. For years with ME/CFS I had to walk even around in my house at a step-pause-step-pause pace to stay below my AT. :(

    In the past 18 months or so, I've improved enough that I can walk around the house normally, and maybe into a convenience store if I'm careful to maintain a slow stroll. Longer walks, including shopping, still put me over my AT even at a slow stroll.

    I'm finding that it's not just going over my AT that's problematic. If I'm upright (not sitting) and doing something -- self-care, housework, walking -- long enough that I'm above about 90% of my AT for more than a very few minutes, I'll pay later with ME/CFS fatigue and increased BP and HR for days. I'm fine doing housework for a while. My HR stays between 80% and 90% of my AT for about 45 mins then it starts to climb, even though I'm doing the same level of exercise. Once it starts climbing, I have less than 5 minutes to sit down and rest. If I don't rest then, I'm less capable for days afterward.

    My house has 3 people and 4 cats, so housework cannot be avoided. :D Well, okay, I did avoid it for the 4-5 years I was sickest and I don't want to admit how filthy my house became. :redface: The compounded allergens were not good for any of us. My point is, at this stage I can work part-time at a non-physical job and do maybe an hour and half of housework, or I can walk for 15 mins. So I'm choosing to earn some money and "exercise" by doing housework. I've been losing about 2 lbs a week for 2 months, so I don't think I'm under-exercising given my body's limits. Walking would be lovely, but it's lower on my priority list than earning money and cleanliness.
    MeSci and Little Bluestem like this.

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