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    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.

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Exercises for POTS

Womble

Senior Member
Messages
138
I am told there are some simple exercises you can do to improve POTS.

Is anyone familiar with these exercises or where I can find out about them?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
You can try them but for me they didnt help a bit.

Leg exercises to strengthen leg muscles particularly the calves. This is then supposed to help with the blood pooling in leg thing. I got told to do squats and leg raises.
.........

Others are into the POTS is caused by deconditioning theory of the ME person being in bed too much and tell them just to do exercise eg walking etc and be up more. It doesnt work!

Take care with exercising with ME. Make the ME worst and your POTS baseline could well worsen too with your other symptoms. If you want to see if strengthing leg muscles helps the POTS, I suggest do the leg exercises while laying down.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Tilt training is supposed to help. I can't vouch for it - it's on my to do list.
  • position yourself with your back to a wall, your shoulders touching it and your heels 15 cm from the skirting.
  • maintain that position for up to 30 minutes
  • try to do two sessions each day.
Note: this is very unpleasant. Don't do it on your own if you think there is any possibility that you might faint.
 
Messages
15,786
I am told there are some simple exercises you can do to improve POTS.

Is anyone familiar with these exercises or where I can find out about them?
The exercises don't work if you have ME: the PEM pretty well destroys any benefits that normal OI patients would get from exercise training. Your doctor might be able to help with meds, but fluids and electrolytes, support socks (if you can get them on), and some supplements can also help.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@Womble

I don't have POTS but rather OI which is NMH. I am able to do pilates, (lying down & with the guidance of an HR monitor) and what I notice is that for about 12 hours after a class my OI disappears....but then it comes back. I'd guess this is because activated leg muscles are engorged with blood and probably act like internal compression socks.

Sushi
 

lastgasp

Guest
Messages
40
Tilt training is supposed to help. I can't vouch for it - it's on my to do list
  • maintain that position for up to 30 minutes
  • try to do two sessions each day.
Note: this is very unpleasant. Don't do it on your own if you think there is any possibility that you might faint.

Sounds great for people who don't have ME - early fainting is the best outcome you could hope for if you do (but you probably won't) - instead damage to the heart, brainstem etc and permanent severe disability and loss of ability to stand, at best inability to do anything else but lie down for the rest of the day which sounds kind of counter-productive. Sufferers can already achieve that sort of diaster by activities of daily living.

Prolonged standing is one of the worst things you can do with ME.

People with ME are already doing as much as they can, why wouldn't they, to do any more means robbing themselves of some functioning in other aspects to temporarily achieve it. This is why "retraining" won't work - the disability is all pervasive disease process & ongoing injury, not a hit and run & fear avoidance/ deconditioning/ laziness.

PwmE continually report that standing is one of the worst things, often a precursor to becoming severely affected.

Even small excesses of activity which produce no short term bad effect can over weeks build up to cause a crash.

The rehabilitation school keeps pushing the myth that pwME are doing less than possible and that there's a safe "headroom" above them to move incrementally into without exacerbation due to an elastic glass ceiling, if only that were true. In reality they have next to zero understanding of the exercise pathology of ME because even the knowledgable people don't know that much, it's all about ideology and hubris.

The GET studies have very poor results (a big fat nothing if you include objective measurements of fitness and return to work [i.e. significant "recovery" in most people's dictionary) and that's with non-severely affected patients.

Best to look at the disease processes and ignore this sort of misleading messiah complex rehab school crapola for what it is.

 

Seven7

Seven
Messages
3,444
Location
USA
I have seen a few POTs specialist.
1) Tilt training is easy (rough on you) do without meds (no midodrine or Florinef) this is a natural way to train the brain to accept the lack of oxygen. Did not work for me as a huge but help some. I was not willing to go without meds because the payout was not worth it in my case.
2) Any strengthening of the legs and abs. BUT this is only to help the pooling, so you need to address the second part. not only do this.
3) Any Pool is the best and gentle stretching. Pool acts as a natural compression and helps with the mechanics of blood (too technical) so if you do in water gentle to start with. I did not go this route because by the time I put a bathing suit and go to the pool I am tired and wiped out.
4) Semi - Recumbent bike: I know got a prescription to move to this method since my pooling is ok, I need to work on the aerobic to increase it. 3 times a week 20 min (based on my tests). Increase a set every 4 weeks.
5) Anything that is aerobic and laying down (following the excercise rules (stay under AT, X min on X min off....)
Example: Rowing Machine.