• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

GET makes me feel better?

Martin aka paused||M.E.

Senior Member
Messages
2,291
I used this catchy and provocative headline to ask a question:

I am having a serious crash that already lasts for about a week. I'm 95% bedbound and can't talk much. That's weird because before that I had six weeks where I was 80 % home bound, but did not have to lie in bed and was able to cook, meet with friends, talking for hours, working in home office for two hours a day........ And really feeling quite good.
Normally the crashes come rapidly, but this time it was worsening for a few days until I was not able to leave my bed. And I really don't know why, because I don't think that I did too much. Hope I am not getting from moderate to severe :cry:

Here comes the question: I think I have POTS because my heard rate goes up while sitting and standing (from 80 Bpm to 115-120 or so). BUT: I feel much better while standing for a few minutes, then lie down again. If I lie the whole day, I feel much worse. Any thoughts are welcome... should I continue with this GET or is my body betraying me :)

Thank you!!!

Martin
 

helperofearth123

Senior Member
Messages
202
Sorry to hear you are having such as awful crash!

Well done on figuring out the POTS stuff out and discovering its good to circulate the blood manually a bit - I can only applaud that.

That's not GET though! - mainly because you did it on your own. Figuring out your own energy limits is not GET. For it to be GET to you would have to be referred to a psychotherapist who tells you to do the amount of exercise you are already doing and not change anything. Unless you thought you needed to be told to do more, in which case you would already do more. So GET is being told by someone else that you need to do more, which isn't the case here, so I have to say that GET is not working for you because you are not receiving it. You set your own amount of exercise and you did it, you get credit for skilful illness management. :)

(not a pseudoscience like GET).
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
Sorry to hear you are having such as awful crash!

Well done on figuring out the POTS stuff out and discovering its good to circulate the blood manually a bit - I can only applaud that.

That's not GET though! - mainly because you did it on your own. Figuring out your own energy limits is not GET. For it to be GET to you would have to be referred to a psychotherapist who tells you to do the amount of exercise you are already doing and not change anything. Unless you thought you needed to be told to do more, in which case you would already do more. So GET is being told by someone else that you need to do more, which isn't the case here, so I have to say that GET is not working for you because you are not receiving it. You set your own amount of exercise and you did it, you get credit for skilful illness management. :)

(not a pseudoscience like GET).

Okay, then let's call it just "Exercise" ... So it's recommendable to give the pump a little bit to do and stand up, even when the heart rate goes up?! I want to improve... Not to worsen.
 

Sundancer

Senior Member
Messages
569
Location
Holland
Here comes the question: I think I have POTS because my heard rate goes up while sitting and standing (from 80 Bpm to 115-120 or so). BUT: I feel much better while standing for a few minutes, then lie down again. If I lie the whole day, I feel much worse. Any thoughts are welcome... should I continue with this GET or is my body betraying me :)

Thank you!!!

Martin

yes, sounds POTSY,

I had that 15 years ago, a thoughtful physiotherapist advised me about what you're doing now. I had been laying flat more or less for err, some weeks.

she told me, you try to sit up straight on the side of your bed, then acclimatize some minutes. Then you stand up straight some minutes. Then lay down again. Do that a few times a day. Take those movements slow so as to give your body time to get used to it. In a few weeks my dizziness was much reduced and the POTS disappeared too, but that took much longer.

She was much better then the neurodoctor who told me i had a psychiatric disorder....

With help from husband or son I made it downstairs twice a day, then rest ( flat) and once a day i took a walk ( 5 minutes, very slow. With the strong hand of my son as guidance)

That time I've come in total remission and used her advice again when i became bedbound again two years ago.

cheers, I hope you'll soon recover from your crash, take good care
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi @MartinDH,

This has come up before under the guide of aggressive rest therapy - some of us, myself included, really don't do well with zero activity. We have to strike that awkward balance or we get worse, from either under-exerting or over-exerting. This is on a day-to-day basis, so not the result of deconditioning.

I'm a POTSie and imagine it has something to do with circulation and sympathetic balance. I have found personally that it is not just physical activity that influences this but also mental/emotional, for want of a better description. Several times after relapses I have used computer games as a 'graded exercise' tool, if I slowly ramp up both the duration and intensity of the game I can see improvements to my cognitive ability over time.

It sounds a bit far out, but I see parallels with POTS treatment advice like physical 'tilt training'.

Ryan
 

mattie

Senior Member
Messages
362
BUT: I feel much better while standing for a few minutes, then lie down again. If I lie the whole day, I feel much worse. Any thoughts are welcome... should I continue with this GET or is my body betraying me
Standing or walking around a bit often gives me a false sense of having more energy. Its adrenalin release / POTS.
It makes me worse and causes crashes if I am upright too often.
 

Sundancer

Senior Member
Messages
569
Location
Holland
Standing or walking around a bit often gives me a false sense of having more energy. Its adrenalin release / POTS.
It makes me worse and causes crashes if I am upright too often.

yes, agree totally.

As in all things it's finding balance. I'm glad i was still strong enough to follow her advice, she also warned me that i should not overdo it and after talking to me and observing body she told me to start with Only sitting straight for a few minutes. then, if i took that well to build it up to standing. Still grateful. Only now do I know that I have ME, nobody ever told me that.