No exercise capacity at all (ME/CFS + POTS) – tips for holding onto muscle while on tirzepatide?

Hi all,

About a month into tirzepatide and the scale is already moving a bit, which gives me some hope. The problem is that I'm completely unable to do sport or any kind of physical exercise. Myalgic encephalomyelitis (ME/CFS) plus postural orthostatic tachycardia syndrome (POTS) mean I have basically zero exercise tolerance. This is a recent development and it really suck. Sports used to be a huge part of my life (weightlifting, cycling, running, skating, skiing, swimming)…

So I'm curious whether anyone else here deals with these same diagnoses, or whether any kinesiologists or other professionals might weigh in. When exercise isn't an option, how do you stay as healthy as you can on a GLP-1, particularly with regard to keeping muscle mass?

I realize that dropping weight is important for my long-term quality of life, but it's genuinely tough when you can hardly do anything physical.

I'd really appreciate hearing any experiences or advice. Thanks!

During weight loss, creatine can be useful for preserving muscle mass. Making protein the main source of your calories would also be worth prioritizing. That said, since I have no idea how either approach interacts with your medical conditions, run it by your doctor first.

FartfulCodger said:

During weight loss, creatine can be useful for preserving muscle mass. Making protein the main source of your calories would also be worth prioritizing. That said, since I have no idea how either approach interacts with your medical conditions, run it by your doctor first.

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Yeah, protein is definitely key, no argument there. I also take 5 mg of creatine daily. From what I've read, that's supposed to be beneficial for ME/CFS. As for the medical side, I probably understand my own condition better than my doctor does, and I'm familiar with the basic guidelines. Still, it feels SO backwards to avoid exercise…

Protein is clearly the number one factor — roughly 1.5g/kg based on ideal body weight — and that amount has been demonstrated to limit lean mass loss during glp-associated weight reduction. In most cases muscle loss isn't really an issue as total mass falls: a lighter body needs less muscle to move around, and almost everyone ends up with better mobility and exercise tolerance. The picture gets more complicated when sarcopenic obesity is the starting point, so it partly comes down to how much muscle you already have. Simply being overweight or obese usually raises muscle mass through anabolic effects alone, even in the absence of exercise, at least for most people. If your starting muscle mass is well below average, professional guidance could be worth seeking, though I'm not sure solid research exists to support that advice.

In my own case, a large weight loss brought my blood pressure down dramatically — from needing hypertension medication to vision going grey when I stood up, with sitting or lying bp averaging 105/65 and a drop plus high heart rate on standing, which doesn't quite meet the criteria for POTS. It may be worth monitoring whether yours shifts alongside your weight; I don't know how much you're aiming to lose, but for me the effect was substantial, and I did lose 81kg in the end.

Best of luck. I haven't been diagnosed with that condition and haven't pursued a diagnosis, since doctors tend to view it quite negatively and useful treatments are scarce, but I do have many of its features. After dropping around 30 kilos, at 115kg, I did get considerably fitter: I began with 5 minutes of walking per day, and because the amount was so small I avoided any exaggerated post-exercise exhaustion, then gradually increased it as I lost another 40 kilos. That doesn't guarantee it would work for you, but it did for me.

Beyond the points already raised about muscle-sparing compounds that have shown promising results in trials, it might be worth checking out the VERU phase 2B QUALITY study and forming your own view.