Zero exercise tolerance (ME/CFS + POTS) – how to keep muscle on tirzepatide?

Creatine can support muscle retention while losing weight. I would also try to get the majority of calories from protein. Still, discuss it with your doctor since I have no knowledge of how these approaches interact with your specific conditions.

Protein intake comes first, roughly 1.5 g per kg of ideal body weight, and studies show this reduces muscle loss during GLP-1 weight reduction. Muscle loss is usually not a real issue because the body needs less muscle to move a lighter frame, and most people end up with better mobility and exercise tolerance. Starting from sarcopenic obesity makes it more complicated and depends on how much muscle you already carry. Simply being overweight tends to build muscle through anabolic effects even without training in most cases. If muscle mass is already well below average, specialist input might help, though research on that scenario is limited. Losing substantial weight lowered my blood pressure enough that I no longer needed medication and now experience greyed-out vision on standing with average readings of 105/65 while sitting or lying and a rise in heart rate on standing that falls short of full POTS. It may be worth monitoring.

Besides the points already raised about agents that may spare muscle and have promising trial results, it could be useful to review the VERU phase 2B QUALITY study and decide what you think of it.

I have a form of CF that is not the usual type. Mine involves secondary adrenal insufficiency, Hashimoto's, MCTD and a version of myasthenia gravis without the typical antibodies, all autoimmune. In my situation prednisone greatly reduces exercise intolerance. I go from being unable to stand to feeling relatively normal and even able to exercise when I take a higher amount. The downside is that prednisone causes muscle weakness, bone weakness and skin thinning over time, so long-term use is harmful while short-term use is not and can be lifesaving. It is also strongly anti-inflammatory and might improve muscle function if inflammation plays a role. If trying it, a modest dose such as 15 mg daily for a very short period, taken with a small amount of food and followed by exercise two hours later, is what I would suggest. Studies using hydrocortisone for ME/CFS showed no benefit, which matches my experience, yet name-brand prednisone works very well for me.

Creatine looks like a solid choice. There is no need to worry about adding a couple of kilograms since it is only water. KPV might also be worth considering for your condition.