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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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Increasing aerobic workout - I crash after 15 mins - but want to gradually increase...?

Hip

Senior Member
Messages
17,873
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??

The speculation here has been that when ME/CFS patients have POTS, then this may be when exercise most benefits.
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
The speculation here has been that when ME/CFS patients have POTS, then this may be when exercise most benefits.
Valentijn commented that:
.............and I did indeed feel somewhat better. For about 15 minutes.

Then I crashed for over two weeks.................

so I took that to mean that there wasn't any real benefit to be gained. I know someone with CFS who in the last year or so developed POTS and she is now more or less bedbound which she wasn't previously. Even her ability to go online has been greatly diminished.
 

Hip

Senior Member
Messages
17,873
I took that to mean that there wasn't any real benefit to be gained.

In the case of POTS patents who do not have ME/CFS, exercise is known to improve this condition:
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

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.
 

Bansaw

Senior Member
Messages
521
Update: Now I am investing in walking, and thats helping I think. I'm also stretching. My muscle aches continue but in the past week or so they've improved since I cut out lactates (calcium and magnesium lactate supps).
Exercising did help me feel "human" for at least a few hours, but the crashes and damage it caused afterwards mean I have to have a different approach.
However, if all I do is rest, then my body gets stiff and I feel lethargic, and my cognitive function goes down. Its finding the balance somewhere inbetween resting and activity.

I hear so much about Dr.Meirleir and how he's helping people and I would love to see him. I actually am a Brit living in the US but if I visit the UK again in the near future I might pop across to Belgium to see him.
He's dealing with Lyme people and I had something similar in Typhus. I think he's the guy that'll be helpful to me. I've seen some very good doctors that have each helped me +5% here and there, but not a significant change in heath to be honest. I might look into Oxalates as well and start to read up on that.
 

SOC

Senior Member
Messages
7,849
[QUODTE="Bansaw, post: 614204, member: 15787"]I hear so much about Dr.Meirleir and how he's helping people and I would love to see him. I actually am a Brit living in the US but if I visit the UK again in the near future I might pop across to Belgium to see him.[/QUOTE]
Dr DeMeirleir also sees patients in Reno, NV (at the Whittemore Peterson Institute, I believe), so no reason to wait until you can get to Europe to see him.