1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

My experience with exercise testing -- the advantages and disadvantages

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

  1. rosie26

    rosie26 Senior Member

    Messages:
    1,047
    Likes:
    1,317
    NZ
    I was a fast walker too SOC lol I realize now the energy that I must of burned, doing that !

    I have a ME friend whom I meet for a coffee and chat when we are both up to it. So funny how slowly we walk together.
    She has a sense of humor too, so some light relief amidst the hard slog.

    I will never forget when I first collapsed with ME. I was deathly sick. I shut off one of the bedrooms, closed the door and didn't go in there for 3 months. When I feebly did open it, there were moths in the room, some big. It was shocking. Had the pepper smell of dust too. It's a whole different world when you are sick.

    4 cats SOC ! that's lots of fluff. For me it's birdseed everywhere, budgies, they flick it everywhere !
     
  2. SOC

    SOC Moderator and Senior Member

    Messages:
    5,351
    Likes:
    6,413
    USA
    Yes, rosie26, 4 cats is a lot of fluff. :D The chinchie is worse though -- light floaty fur and dust bath dust everywhere. I've found myself literally vacuuming floating fur out of the air near his cage. :eek: Budgie seed has its own "pleasures", I imagine.
     
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,633
    Likes:
    1,992
    Midwest, USA
    SOC, Did you have any idea this was happening before you had your heart rate monitor? Could you detect the 'sit down and rest now' point?
     
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,694
    Likes:
    4,395
    Cornwall, UK
    I called my walk 'the ME trudge'. I couldn't lift my legs properly as it exhausted me, so it was very easy to trip over very small obstacles or even just a rough surface. It was when I saw a woman walking the same way, and going up stairs on hands and knees, in a video that came with my Open University course, that I started crying with realisation of what I had, after being ill for 4 years.
     
    SOC likes this.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,694
    Likes:
    4,395
    Cornwall, UK
    My house is pretty dusty and furry (3 cats), etc., but I'm not too bothered, although as you say the dust can be allergenic, and I do try to clean up a little when people are visiting.

    Other things have to take priority with me.

    Anyone worried about not being able to do housework may take heart from this quote by Quentin Crisp:

    So you had actually got to the point where you could have ignored it! :lol:

    (There are more gems from Quentin Crisp here.)
     
    SOC likes this.
  6. rosie26

    rosie26 Senior Member

    Messages:
    1,047
    Likes:
    1,317
    NZ
    MeSci

    I don't know if you have noticed but there is a look that ME people have, a walk as well.
    I notice it in the faces and the way ME people move there heads and eyes ( very slowly ) and the walk is a walk that is trying to keep a balance.

    ( I don't know if I have expressed myself properly here. I am very tired and need to get to bed, oh dear, as of now ) x
     
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,694
    Likes:
    4,395
    Cornwall, UK
    Have a good rest! :sleep:

    I think I tend to walk leaning forward, maybe partly because my brain is trying to get ahead of my legs! :lol: Seriously, it may be more that my legs are the least co-operative part of my body and/or take most of the strain of walking so get most tired. It's easier since I got my mid-torso muscles working again, as I can turn my hips more to provide forward momentum.

    One reason I move my head and eyes slowly is to avoid getting dizzy. I have to be particularly careful about turning to look behind me, and have to prop myself very firmly on my walking stick first, otherwise I am liable to lose my balance. Sometimes I have to avoid doing it at all other than stopping completely, steadying myself, then turning round completely so as to be standing facing backwards, rather than turning my head.
     
    rosie26 likes this.
  8. GracieJ

    GracieJ Senior Member

    Messages:
    482
    Likes:
    792
    Utah
    Interesting thread.

    Years ago, before I knew what the full ME/CFS picture looked like, my motto was Move or Die. Not exactly into aerobics ever. Just tried to move my body, walk around the house, stretch, walk down the block and back.

    I could not exercise like other people, ever. Building up reps or stamina was impossible. Often, I thought it was just me -- some odd aversion or mental "wall" I needed to confront. As I became worse, "movement" got more basic -- get up, shower, dress, then go back to bed = a successful "day."

    Ever stubborn, I have always tried to have an exercise program in place. Failure followed on failure.

    My activity level diminished more all the time, almost to nothing. Still, I persevered. I would get on the treadmill at the lowest settings for one minute a day, then work up to five. Over months, I managed to make it up to two miles a day -- but always only if I went very slowly.

    I noticed that walking uphill from a parking lot, I had to slow way down, as my heart rate would take off.

    Thanks so much for helping me understand why going slow works. I have not been able to exercise for about a year now, and miss it. Have been planning to resume the one-minute plan again and build up. Truth is, I feel better with my very slow and leisurely two miles a day. Now I see why it worked.

    Exercise disappears with crashes. Did it contribute to the crash? Do not think so, but will now be considering that possibility.
     
    ahimsa and MeSci like this.
  9. GracieJ

    GracieJ Senior Member

    Messages:
    482
    Likes:
    792
    Utah
    This also explains why I cannot build up any time on my new elliptical. Heart rate goes up way too fast, muscle burn happens within a few minutes. Should have gone with a treadmill.

    Anybody wanna buy an elliptical? Slightly used, a little dusty... :)
     
    madietodd likes this.
  10. Artstu

    Artstu Senior Member

    Messages:
    184
    Likes:
    73
    UK
    As a fast walker previously I hated having to walk slowly, I remember being overtaken by a small elderly lady walking her dog. Eventually after years of slowly building up I can now walk at more or less my previous healthy pace. Which of course will cue the usual accusations of me not having ME/CFS. In any other illness such achievements would be something to be celebrated and offer hope and inspiration to fellow sufferers.
     
  11. madietodd

    madietodd Senior Member

    Messages:
    2,476
    Likes:
    1,732
    East Coast, USA
    There's a wide variety of abilities here. I've never been able to build up my stamina through exercise, but that doesn't mean you couldn't. It's just relatively rare to have that work. And there's a lot of sensitivity around the issue because of people crashing for years after being forced to do GET "therapy" in the UK. I'm happy for you that you're improving, through whatever means.
     
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,694
    Likes:
    4,395
    Cornwall, UK
    It is definitely possible to improve with ME. But what helped you to build up may have been better pacing/diet/other changes rather than exercise/activity itself. As others have said here and in other threads, it is fixing/reducing underlying problems that facilitates increased activity, although as long as you do keep taking it slowly you probably can build up some muscle mass that way.

    I too managed to speed up, but I don't think it was a result of repeating the activity. At first I could not make any headway, and remember telling people so as they said 'encouragingly' that I would soon get fit from the unavoidable walk into town.

    It's so long ago now that I can't remember when I did eventually reduce the time it took me to walk up that hill, or what I had done that might have made it possible. The ease of the task still varies, from being able to do it in one go on a cool day after pacing well for several days, to struggling and having to stop to rest several times, due to overdoing things (or having too much carbohydrate) on previous days, and/or the weather being hot.
     
    madietodd likes this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,694
    Likes:
    4,395
    Cornwall, UK
    You probably don't realise how happy it makes me to know that someone has benefited from advice from fellow ME-ers! :)

    If only this kind of advice was given by health professionals, many of us would not have got worse and might be living relatively-normal lives again.

    Good luck being a tortoise!
     
    ahimsa likes this.
  14. GracieJ

    GracieJ Senior Member

    Messages:
    482
    Likes:
    792
    Utah
    MeSci

    Definitely! It takes a lot of years of trial-and-error to put it all together. I have a lot of hope for the newly-diagnosed, as they do not have to do that. Of course, the physicians are not on it yet as needed, but the patient population sure is!

    It has been 30 years now, since I first attempted to build a reasonable exercise program and could not. Probably longer! Have been sick 23 years... goes to show there are earlier patterns before full onset.

    SOC I am adding this thread to my PDF library. You have done a great job explaining the mechanisms behind AT, and I will definitely be studying it more closely. Thanks!
     
    SOC likes this.
  15. SOC

    SOC Moderator and Senior Member

    Messages:
    5,351
    Likes:
    6,413
    USA
    No, absolutely not. I can't even detect it now without a HR monitor. I do notice when I've been over my AT for 5-10 minutes -- I'll get hot and start to sweat. But by then I've set myself up for a full-fledged crash.

    quote by Quentin Crisp:
    It does if your husband doesn't take out the cat litter! :eek:
     
    MeSci and Little Bluestem like this.
  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,633
    Likes:
    1,992
    Midwest, USA
    I suspected that was the case. I wonder how many more of us (like me) are doing the same thing to ourselves. I think the heart rate monitor could do a lot toward at least stabilizing people with ME. I wonder how long it will take to catch on with the medical community.

    What did it cost to get the test to determine your anaerobic threshold?

    Sorry about the belated tag. I saw my yesterday's post, thought that I should have tagged you, and did so without looking to see if you had replied. :ill:
     
    ahimsa, MeSci and Valentijn like this.
  17. SOC

    SOC Moderator and Senior Member

    Messages:
    5,351
    Likes:
    6,413
    USA
    I think a lot of us are doing this to ourselves. Maybe most of us. If I did as much as I felt like a could in the moment, I'd be crashing, or at least mini-crashing myself all the time. Now, my days are pretty consistent in that I can do the same amount each day and I can predict what I will be able to do, like work 4 hrs a day, without worrying about that roller coaster unpredictability we all know and hate. Granted, I have to do less in the moment, ie, stop when my HR tells me to, not when I'm done with something or feel like I'm tired, but in the longer run I get to do more. So I agree, I think it could do a lot towards stabilizing many ME/CFS patients. It's not a cure, but it's a good management technique.

    I don't remember what AT testing cost -- I haven't been paying the bills since I got sick. I'll check with hubby, though, and let you know.
     
    Little Bluestem, ahimsa and MeSci like this.
  18. madietodd

    madietodd Senior Member

    Messages:
    2,476
    Likes:
    1,732
    East Coast, USA
    SOC, does AT testing = VO2 max testing? I see VO2 max testing offered locally for under $200, but it's clearly for athletes. Do PWCFS need to have it done at special centers?
     
  19. SOC

    SOC Moderator and Senior Member

    Messages:
    5,351
    Likes:
    6,413
    USA
    It's basically the same test with some adaptations they can probably do easily. First, the athletes probably run on a treadmill while PWME do better on a stationary cycle. You could ask the testers which they use. Second, you reach your AT before you reach your VO2max. If you stop at your AT, you'll probably not crash. If you go over your AT all the way to your VO2max, you'll probably crash.

    So you'll want to be clear if you only want to know your AT, not your VO2max and that you want them to stop the test at that point. It's also wise to make sure the tester knows that PWME usually have much lower AT's than healthy people, so that they don't think the equipment is off or some other foolish assumption.
     
    ahimsa, madietodd and MeSci like this.
  20. SOC

    SOC Moderator and Senior Member

    Messages:
    5,351
    Likes:
    6,413
    USA
    Little Bluestem
    Hubby says that to the best of his memory, the test and the consultation with Connie was about $500. That included the test, a detailed analysis and explanation of the results, and exercise/activity advice.
     
    Little Bluestem likes this.

See more popular forum discussions.

Share This Page