Deconditioning Theory IS DUMB!

[Seven7]

This is one case study of CFS and NOT deconditioning.

I am your typical ME patient: PEM, OI, Lessions in brain, Low T cells, Low NK cell, High B cell, Viral Re activations........ (all verified by tests). I see one of the Best CFS specialists. (I have tested and proven not to be depressed).

I just wanted to tell you that I am a very particular case, I am in the high functional spectrum ON AND OFF, I am more like a remitting, relapsing type. So I do not buy the deconditioning theory because I am the prime example that I can go from one day to the other to be in bed and being unable to brush my teeth, to a few days later to live a normal life. I work full time and have a house and a family to tend to.

I get remissions from colds and My period (second day and on) where I am a normal person with no limitations. When I get a cold, I can run for a bit if I want, which is my major relapse trigger for me. So how do you explain that I can be in the worse of crashes, I get a cold and I can go running with no pay back. My colds only last a day or 2 tops (and I rarely gets them) so the relief is no long lived. In this period of lucidness I can tell the big difference and what ME really feels like. I have that blessing where most don't ever feel normal.

My point is the following. If you have ME even when you are on good periods, and I can exercise and lead a mostly normal life. I STILL have ME, I still suffer from symptoms as much as I did when I was bed ridden. I am more active than most people around me despite of being sick. I see my co-workers and their sedentary life, and they do not have symptoms as I do. The being unable to brush my teeth, take a shower or even go up the stairs, come and go like everything else for me. So I am all open to donate blood, being study or whatever. But stop saying we get this bad because is deconditioning!!!! there is something else going on at the core of the disease that brings us down to our knees. FIND IT.

 

[justy]

Yes Inester, i can only say that i agree wholeheartedly. I am obviously unfit these days afyer 5 1/2 years being very sedentary. But when i have those good spells -had nearly a whole good summer this year! then i can do things such as swim, garden, walk, be on my feet all day etc.

Besides, if it where de conditioning then we simply need to recondition - depite attmepts to get VERY fit in the past i could never get there - even when swimming and cycling daily (when i had a long near remission) all around me wherew getting superfit bodies and not feeling it when they walked up a hill etc but i struggled ALL THE TIME and still felt unfit, even though i clearly couldnt be.
For me there are also all the continous other infections, colds, flus, stomach bugs etc etc that i pick up all the time. I can get to a point of feeling improvedand be doing more than avery sedentary person and then all of a sudden i will catch something and go backwards for months - back to bed and coach/house bound.

The deconditioning theory is bullshit.
Justyx

 

[peggy-sue]

I was very fit when I very suddely became ill - in the space of a few seconds, in the middle of a lovely great long walk (of ~ 10 miles).
I did about 5 hours of yoga practice a week, walked everywhere, ran upstairs because it was faster than taking the lift, and enjoyed hill-walking for miles and miles at weekends.
I am not bedbound, I get up and dressed every day, I potter about and do bits and bobs of housework, but I am fairly housebound.
I try to remain as active as I can without crashing, I still enjoy walking, but only very slowly, and on the flat.

A few years into being ill, I had a wonderful weekend away attending a conference in Edinburgh with a very good friend.
She is overweight and drives everywhere, even to the corner shop for a pint of milk.

I was far fitter than she was, walking around Edinburgh, she really struggled to keep up with me.

However, I got payback a few days after I got home.
She didn't.

 

[Snow Leopard]

I have actually been exercising for over a year and I am much fitter than I was, but I still have just as much mental fatigue, the headache that I have had for over a decade never goes away and I am still hit really hard for two days after moderate exercise. But when I actually do exercise, I feel stronger/faster so I know I am fitter than I used to be. I've no doubt I could hit a respectable VO2 max on day one, only to have a terrible response on days two and three.

 

[peggy-sue]

I often wonder if all the yoga I did has helped me not to be as sick as I might otherwise have been.

It was all anaerobic exercise. It built core strength in the slow-acting muscle fibres.

 

[Ruthie24]

This is what I try to tell my docs all the time and they DON'T get it! I worked with deconditioned people for decades so I know what they look like and how they behave. They don't go from barely moving thru the house one day to being able to function nearly normally the next. Then able to walk 4 miles at a rapid speed for a couple weeks, only to end up back in bed for weeks afterwards. They don't bounce around like this in functional levels.

I did a cardiac rehab program a couple years ago when first diagnosed with POTS and ended up taking twice as long as normal to complete it because it kept causing me to crash. When I finished it 6 mos later I had "improved" my cardiac fitness level by 200% (woo hoo!) but could do fewer repetitions of exercises and fewer sets than when I started. AND, I found it ironic that 2 weeks before my 200% improvement was charted, they'd sent me to the ER because I'd totally collapsed on them. So really, my 200% improvement was just the day they happened to measure me. IF they'd done it the week before, when I was still recovering from the collapse, it would not have been nearly so impressive. Yeesh!!

Hence, why I find the 2 day exercise testing so fascinating and why it's so frustrating that they won't include it in the CDC study!

 

[Ruthie24]

@Peggy-Sue- I did yoga for 15 years before becoming ill. Now I wonder if it wasn't already starting in some ways because even after all those years of doing it regularly (minimum of 3x a week) I would still be extremely sore and fatigued afterwards for the last few years. I remember asking my teacher why I should still be getting so sore when I was doing the same types of things and using the same muscles..seemed to me the muscles should have been strengthening and accommodating after all that time.

I do think overall the yoga was helpful though. Now I can do very little without it aggravating things unfortunately. I miss it tremendously.

 

[justy]

Ruthie24 said

I remember asking my teacher why I should still be getting so sore when I was doing the same types of things and using the same muscles..seemed to me the muscles should have been strengthening and accommodating after all that time.

This was my experience when i was in a long remmission. We lived up a very large hill and i had two small kids and a pushchair, the park was at the bottom of the hill and for a few years i would walk up that hill every day, pushing the pushchair with a toddler riding shotgun and still i would be absolutely exhausted and my muscles screaming every time i did it. Surely with exercise and training one gradually is able to do more and becomes stronger so that activites such as this are easier - this never happened for me, even though at the time i thought i was 'recovered'. I now realise i was not and in fact have had this problem most of my life.

I do think overall the yoga was helpful though. Now I can do very little without it aggravating things unfortunately. I miss it tremendously

Same here too. I did many years of Yoga, always feeling wiped out after, but i did enjoy it. Now only 5 mintues a day aggravates my condition. When i have weeks of feeling better i try a very gentle short session every other day, but quickly crash back to bed/couch if i keep this up for more than a few sessions. When i do the Yoga i do feel good from it and for a few mintues afterwards, but the good feeling doesnt last. Spo i am now semi functioning around the house, but unable to push beyond this to ANY extra exercise, including walking (i used to force myself to do a short 200 - 300 metre walk every day, (well most) around the garden and up the lane a short way, but i found it meant i could function less. After 3 years of doing this i have now given it up and i have a tad more energy for my family and house.

all the best,
Justy

 

[peggy-sue]

I only took yoga classes for 3 years, but it was before I got ill.

My response to it was to become very fit and strong, my balance and co-ordination improved dramatically, all movement was so easy it was pure joy - running UP hills and mountains, and I was working very nicely on improving my figure - almost attaining a waist.

I cannot do it any more.

 

[Seven7]

I wonder if the subgroup with OI (which I have) has a harder time with exercise the those without.

 

[peggy-sue]

I don't have OI now, nearly as much as I used to.
It appears if I'm in a really big bad payback, but thankfully, it's been a few years since I was dropping all over the place.

 

[stridor]

Man, I was glorious when younger. Not a big guy but all muscle and sinew and I took great pride in working circles around anyone. Unstoppable. ME has been a fall from grace...

We are de-conditioned in the same way a quadriplegic is de-conditioned. It is not a character weakness or flaw; it is a simple physiological response to being unable to perform the type and amount of activity to maintain fitness.

Some would say that I am tough. Bipolar does that to people. We accept that only part of our lives will be worth living. We become accustomed to, and accept, this reality. It has a distinct downside in that we can push ourselves too hard. I tried to "push through" adrenal failure and this may have contributed to their permanent damage.
I also tried to force myself to be active in the early stages of ME and one has to wonder whether I contributed to my current state.

Exercise has the potential to "chew-up" DNA. I had a Dr who recommended an exercise program and I "lost it". I said, "OK, let's go for it!" and did what I was asked and spent the next 3 hours in emerg.

We do not choose to be de-conditioned. Thanks to a quasi-freddd routine I was able to spend 4 hours working in my garden yesterday - rototilling. I maxed out but am fine this morning after a restorative sleep. I may never work circles around anyone ever again but I have enough reserves to be engaged in a light exercise program now.

 

[Allyson]

I don't have OI now, nearly as much as I used to.
It appears if I'm in a really big bad payback, but thankfully, it's been a few years since I was dropping all over the place.

but OI is not just fainting Peggy-sue - I have OI and only ever faited once when I was 12
the effects of OI are payback - you may not even notice you have trouble standing as the body compensates by secreting more adrenalin to vasoconstirict - so you may actually feel OK standing and still have OI and /or POTs - you need to be tested for it to see if you really have it
but the adrenlin causes all kinds of issues like the photophobia hyperacousia hyper sensitivity to stimuli, mall syndrome etc etc and maybe cushingoid symptoms ( eg abdo fat, fat pad at back of neck etc) after many years of it too
\
cheers

Ally

 

[Allyson]

I often wonder if all the yoga I did has helped me not to be as sick as I might otherwise have been.

It was all anaerobic exercise. It built core strength in the slow-acting muscle fibres.

yes I think recumbant yoga poses and pilates help a lot

it may be that by increasing core strength you support the abdominal veins and so there is less blood pooling - y geneticist agreed with this too

static standing poses and slow walking tho I think are detrimental - too much upright time for too little benetfit

My POTS specialist say slow walking is the worst thing we can do for this reason.

So I cycle rather than walk whenever possible

A

 

[peggy-sue]

I don't get tests for anything Allyson.

We may have the Scottish Good Practice Guidelines published here, which recommend the Canadian Criteria but gps were given the option in it, (by AfME - completely against the original purpose of the guidelines) to use NICE if they want to.
So they do.
No testing. No diagnosis. No treatment. No support. No centres.

"Go away and rot." is what happens here.

We have one nurse in the whole country, who does BPS stuff.

However, I did get a blood pressure monitor. My POTS isn't nearly as bad as it was.

Static standing is bad - walking slowly or shuffling around is better.

I cannot ride a bike - and even if I could before I was sick, there is no way I could keep up that sort of activity now!

 

[Gijs]

I do not read at this forum that people with ME can not breathe well and can get no air by PEM and also in rest. Do nobody have this problem ?

 

[peggy-sue]

When I was at my very worst, yes. Breathing was very, very difficult - a massive effort.

 

[Gijs]

Did you also have panic attacks?

 

[peggy-sue]

Didn't have the energy.

No, I knew what the problem was, just lack of energy in my intercostal muscles etc.

Carbon dioxide build-up from not exhaling fully will cause feelings of panic...

but again, knowing that was what was happening allowed me to take control of the situation

by forcing myself to exhale more.

 

[5ummer]

I don't think deconditioning causes our illness but I do think it can make life more difficult for us. After being bedridden for a several months things started to get harder and harder for me. If I tried to sit up for more than 20 min I was in pain all over. Since started doing very very light exercise I am able to sit up for much longer periods. If my muscles are as strong as they can be, I don't get as tired doing small tasks as I used to. This increases my overall available energy.