Discussion in 'General ME/CFS Discussion' started by Shell, Oct 7, 2013.
That does sum it up nicely.
I definitely find lying down makes me better Shell - so for several crash- free days spent in bed or lying on the couch I get a few good hours or sometimes days up - I guess that is POTs /OI related for me
I know a lot improve on POTs medications thought they do not work for everyone alas - me included
Lying down is less work for your heart than sitting up.
If all your body is horizontal, your feet and head (and everything imbetween) is at the same level as your heart, so you are reducing work it has to do against gravity to get the blood up to your brain.
Not as much as keeping your leg muscles moving, (which is not always possible)
- but it's still helping with work your heart has to do,
pushing all your blood around all of your body,
and subtracting as much work as is possible from this
permanent workload your body is doing the whole time.
but many of us are very fit when we get ill which in itself debunks the deconditioning IMO
yes yoga and pilates recumbent poses and breathing are all good I find too.
I can't tolerate any additional exertion when laying down, nor can many other ME patients. Hence it doesn't just seem to be an OI issue.
I'd be interested to know how deconditioned others feel.
It's strange, because I don't really feel deconditioned and yet I should be with hours upon hours of time that I spend in bed and for the last 12 years. I am probably out of sync with conversation here, dreadful head problems today.
I saw my partner get deconditioned during the time he had cancer treatment and was very sick indeed. I also saw him start to exercise again after a long time not doing anything physical and it was so easy for him. We talked about it and it brought us closer as he could understand a little better what I was going through.
For my partner it was just simple to start with a HR monitor and walk a distance, then walk/run then run, then run further. Yes, he did have muscle aches, stiffness, pain and some strange sensations in his body when he started and with each increase he did feel it BUT at no time did the exercise make him feel really crap or give him viral symptoms or sinus infection the next day (or week) and he didn't get really tired or exhausted for long periods. He had deep refreshing sleep and woke feeling well. It was progress each week.
Ah yes that deep refreshing sleep business. Wish we could have a bit of that! Oh for some of those sweet delta waves!
I am sure if we could get better sleep both the OI and PEM would improve - but even drugs don't help that.
The more I do the more i crash. Simple as that.
I have found that the more I do the less well I sleep. If I can manage to stay up all day, then mostly I can sleep all night (or at least only wake for 1/2 hour around 4am.).
I'm not sure how "refreshing" the sleep actually is, coz I don't feel better in the morning - but I never really was a morning person EVER, so getting out of bed is no worse than it used to be pre-illness.
As for deconditioning - well I have certainly lost a load of strength everywhere, hands, arms, legs, core muscles etc. etc. I haven't lost the urge to want to get out and walk - I used to love a good Autumn stomp through the woods. But I can't do that now. Not due to wasted muscles, but due to the immediate effects and even worse after effects of that exertion.
Oh and for those of you who kindly persuaded me to take more rest - I have over the last few days almost halved the tiny amount of walking around the house I used to do... (Short of re-arranging the house, I don't think I could do less per day now) ... and my symptoms are receding. However I know I'll have to continue to be careful, because I did a tiny bit extra this morning (my mother called round) and I can feel that sort of buzz or tingle that means SLOW DOWN....
Just to about to put on a film to keep me in one place for a while.....
Well done Keela Too - that shows a lot of self discipline.
I've realised I need more of that; although right now my body is dictating my actions a bit more - the "oh i can manage that" is becoming "Nooooo, I just can't". I can't even answer the bloody door to the postman!
A fellow home ed family came round today so the kids had a "play day" and I had a "slumped" day. I am so grateful that a couple of the home ed mums get how it is and can deal with me being out of it and will actually help field my kids with their own a bit so the children aren't paying so high a price for mum being so ill.
I did vigourous exercise for 3 years - 5-6 days a weak nad looked very fit but was still ill all the time and still am - it did not help
many of us including my self were very fit and often even top athletes like Alasdair Lynch Barry Sheehan etc etc get this so deconditioning does not cause it - I hear that deconditioning theory was based on astronauts as they get deconditioned in space and recover on earth with exercise - we do not recover
I would like to see the data that shows deconditioning causes it - I was superfit and doing karate and aerobics daily and cycling and running when I got ill - then they say - maybe you were doing too much!!!! that is not a logical argument !
When "they" (and generally it seems to be psychiatrists here) don't know the answer, the easiest get out is to blame the patient.
GET didn't work?
You were doing it wrong. Too quickly / too slowly / without the guidance of a qualified specialist!!
You feel worse after exercise?
It's all in your head. Something else caused you to feel ill - this outcome is not due to GET.
You feel you need to rest?
We can give you CBT to help you understand how your body is sending you mixed signals - you need to continue with our programme.
You're not improving over time?
You're not buying into the programme.
You are skeptical about this?
Well obviously it won't work if you don't believe in it!
Luckily I was never advised to try GET.
One Doctor did suggest I take 3 short walks a day (instead of one longer one) to help build my appetite.... this was at onset, and prior to her knowing what was wrong with me....
Now my doctors just don't know what to do with me, but at least they are not suggesting I exercise my way well!
There's a doc somewhere in America whose name I can't remember who did some limited research on POTsies based on his hypothesis that as astronauts can get a form of POTS from the deconditioning of zero gravity. (Put aside for a moment the sheer lunacy of assuming that one very unusual circumstance can proof a norm in a completely different circumstance)
Anyway, he came across POTsies who had what he rather stupidly called "grinch heart" - that is their heart was too small.
From there he set up the idea that exercise to recondition grinch-heart POTSies was the way to go.
Many patients report failure from this approach but hey, he's got letters after his name!
As what little evidence we have points to the fact that the majority of people with POTS or other forms of dysautonomia have either normal sized hearts or slightly enlarged ones then the "small heart" people are a tiny subset of POTSies. They certainly should receive a carefully tailored approach to their different kind of POTS if having a smaller heart really does effect them. But this doc put his "deconditioning" as a general approach to POTS out there.
Keela Too The blame the patient approach is abject cowardice and lazyness IMHO. I am afraid I really believe our education system is to blame for a lot of this. From age 2 upwards people are taught what to think and not how to think, what to learn and not how to learn. Those with better memories for "facts" as presented get to become medical students and then doctors but they can't and won't think. (must get down from my soap box before the OI kicks in)
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