• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Has anyone tried treating neuromuscular strain for their OI?

Effi

Senior Member
Messages
1,496
Location
Europe
Has anyone tried tackling this with physical therapy?
The idea sounds interesting, but when I hear 'physical therapy' I instantly think PEM. Even what we over here call manual therapy (a kind of medical massage) is too much for me. It would have to be a very knowledgeable PT. And I think those are very hard to find...

@Sushi could you say what your physical therapy consisted of, just to get an idea?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@Sushi could you say what your physical therapy consisted of, just to get an idea?
Nothing that would give me PEM. Basically, I lie on a table and the physical therapist (or, lately the osteopath) manipulates my body, sometimes using massage as well. The effort on my part is resisting his pressures, which in different manipulations, is pulsed. This could be too much for some but it isn't at all aerobic and doesn't bother me.

Example: I am lying on my stomach to one side of the table with my legs bent and hanging off. He is supporting my legs and pushes down on them in a specific manner while I try to push up. This is of course for a condition that is individual to me, but gives an idea of the type of effort involved.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I had the impression it was some sort of effortless thing where someone manipulates your body to stretch your nerves, but I don't know that I have that right.

But the point of doing it is that not having the nerves sliding freely is producing PEM, so there's probably some PEM involved in fixing it. Dunno.
 

Effi

Senior Member
Messages
1,496
Location
Europe
But the point of doing it is that not having the nerves sliding freely is producing PEM, so there's probably some PEM involved in fixing it. Dunno.
I am just wondering how many physiotherapists would know how to do this correctly... Is this nerves situation (pardon my vague wording) general knowledge for them, or is it something that would just give us the same blank stare most medical professionals give us when we come up with the next novel idea? (I like the idea though, it sounds like there could be something in it. But it could just as well be a trainwreck if not executed well.)
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Dr Rowe's webinar yesterday reminded me of his interest in neuromuscular strain in ME in relation to OI.
I've just caught up with the webinair.

I'm wondering now if this is the phenomenon that leads to the PEM I feel after osteopathic / Perrin treatment. I've always attributed it to lymphatic massage but perhaps it's the neuromuscular strain or a combination of the two.