Refeeding Syndrome

[Koi1]

I do not have CFS/ME but I seem to get recurrent episodes of Refeeding Syndrome after a time of decreased calorie consumption. I experience extreme Hypophosphatemia and Hypokalemia and become completely weak and debilitated and the more I eat the weaker I become.

I have seen several posts of CFS/ME sufferers having Refeeding Syndrome issues.

My question is, how do you know you have it? Who diagnosed you? How are CFS/ME related to this?

Also does anyone know of a Dr. in Illinois who has successfully treated it?

I am not getting any help from the medical community and I'm wasting away.

Thank you and God bless.

 

[Mary]

@Koi1 - I've experienced both hypophosphatemia and hypokalemia. I don't think these are directly related to ME/CFS, but rather were due to particular supplements I was taking - e.g., starting methylfolate caused my potassium levels to tank within a couple of days. The solution was to eat high potassium foods and I also started a potassium supplement, and I started to feel better in a day or 2. No doctor diagnosed me. Before starting the methylfolate I had read that hypokalemia could very likely occur so I was aware that it might happen.

Re the hypophosphatemia - I can't remember exactly what triggered this. However, I did experience marked fatigue after starting one particular supplement and having experienced hypokalemia before, I thought it might be something similar. I'd read about refeeding syndrome and surmised that my phosphate may have tanked. From my reading I deduced that supplying phosphate was trickier than potassium. I read about high phosphate foods (particularly dairy, and sunflower seeds) and drank a couple of glasses of kefir and sure enough, my energy started to come back. I also had a phosphate supplement which I talked to my doctor about and he basically said it was okay in a very small dose, but I preferred getting it from food.

How do you know you have refeeding syndrome? What do you mean by "decreased calorie consumption" - are you talking about fasting or severe dieting? If you are low in phosphate and potassium, are you eating foods high in those nutrients?

Also you might be deficient in other nutrients. Maybe you should consult with a nutritionist if the doctors are of no help. Or maybe you should consult a facility that specializes in eating disorders - I think those personnel should be knowledgeable about refeeding syndrome.

 

[KME]

Where I am it is a dietician who diagnoses refeeding syndrome, using blood tests that must be ordered by a doctor, and it is the dietician who guides the management of it, again in collaboration with a doctor who must prescribe certain things. Refeeding syndrome is extremely serious, but not hard to treat once identified. I'm not clear from what you say whether it has been diagnosed in your case or not. Some people with very severe ME/CFS would be at risk of refeeding syndrome if they have been unable to eat for a while and then start again - this is similar to all other diseases and there is no particular link with ME/CFS to my knowledge. I think you will find more help if you deal directly with health professionals who can help you with your condition(s), i.e. whatever is causing decreased calorie consumption in your case and whatever is causing your current weakness.