Influence of Symptom Expectancies on Stair-Climbing Performance in CFS: Effect of Study Context

[Valentijn]

Sure, but I don't think it's ever advisable to be sedentary in any illness. I always felt I benefited from keeping active even though it was hard at times. I suppose every case is different. Even though I suffered profound exhaustion, I never lay flat for a whole day for example. I try to keep reassessing my physical limits.

I had a sudden bout of intense OI issues hit me twice in the past two years that I've been sick. Each time, sitting up even for a few seconds was extremely difficult and I was unable to think while doing it. I had no choice but to "lay flat" for 3 weeks during the first episode, and 1 week during the second episode.

It was an extremely unpleasant experience - laying down all day is painful and interferes with being able to use my laptop much at all. I did stretch my muscles during this, and would of course get up for very quick trips to the bathroom or to grab prepared food from the kitchen to eat while laying down. I also started "exercising" my legs a bit while still laying down when they started feeling restless.

One useful thing did result of my weeks of laying down - I realized how strongly my cognitive problems are connected to orthostatic intolerance. I was able to think clearly all day while laying down, which was a refreshing change I also realized, after the episodes wore off, how completely wrong deconditioning theories are about ME. Once I was safely able to stand again without symptoms, the first time I went up stairs after a month was way easier than it had been for a very very long time. And as I went up the stairs again and again, usually twice each day, it got harder and harder. Now that I don't need to lay down at all during the day, I usually only go upstairs once, and that helps a bit with my overall ability to be active in more useful areas ... Ideally I'd like to have no stairs to go up, since it seems to improve my physical condition when I avoid them completely.

 

[maryb]

Katherine - I would never use the term profound exhaustion to describe how I feel on my worst days, my body just feels so very sick, my head like an elephant is sitting on it and I basically just want evening to come so I can go to bed. Nobody pushes themselves harder than I do when I am able, even on bad days I get up every 20mins or so and walk to the kitchen and back just to keep everything moving, I agree being sedentary is not good, but sometimes the body just isn't able. I am housebound a lot of the time but for those who are bedbound I pray for a cure more than for myself.

 

[peggy-sue]

My lovely OH had a downstairs loo put into the house for me, so I didn't have to waste a ton of my resources going for a pee every day, so I can do other things instead.

 

[Shell]

I think just about all of us experience the variability in symptoms thing. This disease/disease collection isn't stable. Some days I can walk upstairs all in one go and not need to sit on the bed to recover. Other days I crawl to get upstairs and then need to sit on the bed. Other days, I just can't face the stairs.
I think doctors need to try and actually listen to what patients are saying about exercise, stairs or anything else. We do know what we are going through. Most of us have been coping with all this for many years. They won't improve treatment outcomes until they can listen and learn from us.

 

[Katherine]

Katherine - I would never use the term profound exhaustion to describe how I feel on my worst days, my body just feels so very sick, my head like an elephant is sitting on it and I basically just want evening to come so I can go to bed. Nobody pushes themselves harder than I do when I am able, even on bad days I get up every 20mins or so and walk to the kitchen and back just to keep everything moving, I agree being sedentary is not good, but sometimes the body just isn't able. I am housebound a lot of the time but for those who are bedbound I pray for a cure more than for myself.

I understand. Profound, intractable exhaustion just described the fatigue element in my case. I was very athletic, one of the fittest, before this illness. Debilitating fatigue was just one of the main symptoms for me. Why would you not use the term 'profound exhaustion'? I can see that you have other symptoms, as we all do. I appreciate the severity varies.

 

[maryb]

Its interesting isn't it how we describe our symptoms. Exhaustion just isn't how I feel. I do think it must make it so hard for doctors to understand, mind you I'm not advocating ever feeling sorry for them

 

[peggy-sue]

I don't get fatigued or exhausted.
My body doesn't work, it won't give me enough energy to do stuff, when I try, I get lactic acid build up, immediately. Sometimes the work of holding my head up or breathing gets too much, but I would NOT call any of this"fatigue" or "exhaustion".
Fatigue and exhaustion are that lovely feeling you get after some great exercise and a good mental work-out, just before you get a truly great night's sleep.

 

[Shell]

I think one of the reasons it's so difficult to find the words is because there is so little time for us to explain things properly and often with doctors we are so rushed. Sometimes I can only speak very slowly and slurred so being rushed means I can't explain the bone weary, grinding almost pain sense of the fatigue/exhaustion, or any other symptom.
I've been to more than one (dim) medic who didn't know what a migraine aura was! I explained to a neuro that my seizure aura was like a migraine but minus the black dots and he just stared at me bewildered.
I am coming to the conclusion that no doctor ever picks up a medical book, journal or research paper from the day s/he qualifies.