Opposition to exercise therapy & psychotherapy for fibromyalgia?

[cassava7]

The ME/CFS patient community has long worked on debunking graded exercise and CBT as treatments for the disease but I am not aware of similar efforts in the fibromyalgia patient community. Rather, it seems to me that they have accepted these treatments as part of their standard of care.

I suppose that they, too, are frustrated of being prescribed these treatments even if they might be less prone to harm, owing to the absence of post-exertional malaise. That being said, pain flares are an important component of fibromyalgia and they can be triggered by overexertion.

Has there been any scientific pushback on mind-body and deconditioning-related interventions from fibromyalgia patients?

 

[shak8]

Interesting points.

I think the advice given to FM patients is to do some form of exercise, whatever is tolerated. Sometimes GET is mentioned. But it is assumed that FM patients, in general, have much more tolerance to exercise (however mild) than ME patients (in general).

CBT is the answer to all your problems du jour, no? So it is heavily invoked because research paper after research paper mentions anixety and depression in the same sentence as pain and fatigue in FM.

I am accustomed to these bulky, incessant, and useless memes for the last 20 years. I am n=1 having FM. I don't find the idea of GET or CBT for fibro harmful, just irrelevant and irritating.

That said, I am not on any Facebook or other FM groups as I find the posting too full of woo. There used to be a very good newsletter called Fibromyalgia Network News, but not for 15 years or so.

 

[Solstice]

Interesting points.

I think the advice given to FM patients is to do some form of exercise, whatever is tolerated. Sometimes GET is mentioned. But it is assumed that FM patients, in general, have much more tolerance to exercise (however mild) than ME patients (in general).

CBT is the answer to all your problems du jour, no? So it is heavily invoked because research paper after research paper mentions anixety and depression in the same sentence as pain and fatigue in FM.

I am accustomed to these bulky, incessant, and useless memes for the last 20 years. I am n=1 having FM. I don't find the idea of GET or CBT for fibro harmful, just irrelevant and irritating.

That said, I am not on any Facebook or other FM groups as I find the posting too full of woo. There used to be a very good newsletter called Fibromyalgia Network News, but not for 15 years or so.

If it isn't doing anything for patients isn't it harmful though? I don't have FM but have tried loads of stuff for M.E., some of it making me worse. But other stuff like homeopathy didn't really do anything, it still costed me money that I'd happily have chucked at SolveME or an organization like that if I'd known any better.

With psychology it's worse because it's backed heavily by people in power. So it's not just costing money to the people that do a course, but it's obfuscating the truth and costing taxpayer money that should've went into proper research.

I honestly wonder how much money has been pumped into useless treatments and how much of a difference that might've made to "us" patients. All the stuff that gets chucked in the MUS basket, but also the official diagnoses that are treated in nonsensical ways.

 

[rvallee]

The ME/CFS patient community has long worked on debunking graded exercise and CBT as treatments for the disease but I am not aware of similar efforts in the fibromyalgia patient community. Rather, it seems to me that they have accepted these treatments as part of their standard of care.

I suppose that they, too, are frustrated of being prescribed these treatments even if they might be less prone to harm, owing to the absence of post-exertional malaise. That being said, pain flares are an important component of fibromyalgia and they can be triggered by overexertion.

Has there been any scientific pushback on mind-body and deconditioning-related interventions from fibromyalgia patients?

I follow the fibro sub from time to time.

What I usually see is people saying that exercising helps with the pain and in general but they can't because [describes PEM]. The rest looks pretty awful just the same: gaslighting, lose some weight (then loses weight and GP doesn't even care, moves the goalposts) and general psychosocial lifestyle BS.

Frankly it looks about as awful and filled to the brim with pseudoscience. I don't think there's much to those old diagnoses, frankly, even ME. It's pretty clear that all of this is a spectrum of various issues that simply get labeled one way or another not based on what the patient is experiencing but on whatever happens to influence the physicians deciding on a label or not.

The awfulness is mostly based on how disabling it is. We're some of the worst off because of that, but the general issue of chronic illness is almost universally disastrous in healthcare.