TigerLilea
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I don't have either OI or POTS so I'm wondering if this is possibly why I find that I can do some exercise without it setting me back permanently??
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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I don't have either OI or POTS so I'm wondering if this is possibly why I find that I can do some exercise without it setting me back permanently??
Valentijn commented that:The speculation here has been that when ME/CFS patients have POTS, then this may be when exercise most benefits.
.............and I did indeed feel somewhat better. For about 15 minutes.
Then I crashed for over two weeks.................
I took that to mean that there wasn't any real benefit to be gained.
Exercise, rather than the beta blocker propranolol, is better at improving upright hemodynamics, normalizing renal-adrenal responsiveness, and improving quality of life in patients with postural orthostatic tachycardia syndrome (POTS), according to the results of a new study.
http://www.medscape.com/viewarticle/745090
Okay, I understand what you are saying now.In the case of POTS patents who do not have ME/CFS, exercise is known to improve this condition:
However, if you have ME/CFS as well as POTS, it becomes a more complex issue, as the exercise may improve your POTS, but potentially worsen you ME/CFS.