Wow. Just Wow. You, and the parent post, have described EXACTLY what I've been dealing with for decades now!
I've described it to my doctors as imagine a dixie cup. Water flows into the cup from the tap at a certain rate. In the bottom, there's a hole. When I'm sedentary, the hole is small and the cup is full of water. (e.g. I have energy.) When I'm physically active, the hole is huge and all the water runs out. To the point where my arms and legs stop working, the brain fog gets so bad I can't add 2 numbers together, etc. It can take days to recover, longer if I remain active. It's particularly rough when I come down sick, start coughing, and spend several days after I've gotten over the cold/virus/whatever where it feels like someone is just sitting on my chest. Every breath is a new experience in pain and agony.
Now I've gotten one hell of a run around from the medical establishment. Supposedly I have IBS, lactose intolerance, gluten intolerance, etc. They eventually pigeonholed me as having fibromyalgia, and told me to learn to live with it.
Curious story there: One of the reasons I got pigeonholed into fibromyalgia was odd pain and tender spots in my lower leg. Eventually, many many months later, I came to realize thats where the muscles were that I was using to walk and to manipulate the break & gas pedals in my car. The pain corresponded with a drastic increase in walking and driving in my life! And, with exercise (and ribose) over a period of years, went completely into remission. But I'm getting ahead of myself.
This is, of course, the age of information. I googled everything I could find. And requested all the blood tests I could think of. I've ruled out everything from Lyme disease to liver problems.
Along the way I discovered my B12 was low. Doctors all thought it was fine. Turns out the low-threshold in the US is 200, whereas in Japan it's 550. I had 350. The US number is wrong. Ordinary over-the-counter B12 supplements helped quite a bit, as confirmed by subsequent bloodwork.
In terms of gastrointestinal issues, a good probiotic helps tremendously! I struggled along with yogurts for some years, but probiotics from a reputable lab, while expensive, are worth every penny! They give a far more reliable dose and superior gastrointestinal results.
Something else I've been reading up on is that gluten thing. Apparently, your gut can leak gluten proteins into the bloodstream, creating an allergic response. (Which bloodwork confirmed!) New research is showing that these proteins can cross the blood-brain barrier and bind to certain neural-receptor sites much as opioids do. There's a lot of ongoing cutting-edge research linking this as one of the major (though not exclusive) causes of autism.
Where I really hit the jackpot on my google search was with myoadenylate deaminase deficiency (MADD) AKA Adenosine monophosphate deaminase deficiency type 1. Apparently this is pretty common among folk of european ancestry. Something like 1 in 50 (or 1 in 100) has it. Most never realize it. (Then again, how many tens of millions of people suffer from fibromyalgia or chronic fatigue syndrome?)
MADD is a genetic disease that impairs cellular metabolism. When you are sedentary or inactive, everything is fine. Your ATP (tri-phosphate) becomes ADP (di-phosphate) giving up its energy to the cell and is subsequently reprocessed back to ATP through normal metabolic processes. (Remember the Kreb Cycle from school?) However, when you're active, there's a second pathway that gets activated which converts two ADP molecules to 1 ATP and 1 AMP (mono-phosphate). Normally the AMP is reprocessed via myoadenylate deaminase into IMP which goes through a long complicated metabolic process to eventually become ATP again. But if you have MADD, you cannot produce myoadenylate deaminase. Thus your ATP stores are rapidly converted to AMP, which is eventually excreted from the cell, and reprocessed in the liver or excreted by the kidneys.
ATP is THE cellular energy molecule. So losing all your intracellular ATP stores when you need them most is kind of a big deal.
It seemed like a perfect fit for what I had. The muscle weakness, the exercise induced fatigue, everything. So I tried to get tested for MADD. And I tried. And I tried. No dice. Medical insurance won't cover it. The cost is, well, astronomical. I was quoted a rough figure range and had to ask if they would take chevys as payment.
On the other hand, the treatment for MADD is available over the counter without prescription from Vitamin World down at the mall. It's a type of sugar called D-RIBOSE. At one point I ran the numbers and figured I could take Ribose for the rest of my life for less than what that MADD test would cost me.
Ribose is a precursor for synthesizing fresh ATP stocks. Ribose allows you to regenerate intracellular ATP stores by creating new ATP from scratch. It's used by bodybuilders for just this purpose.
Ribose seems relatively safe. I've consumed many kilos of it over the years now. (Though never more than 5 or 6 grams at a time, or 15 grams in a day. Usually I take more like 3 grams mixed into a cup of water.) I have heard that large doses, above 60 grams, can cause diarrhea. I'm concerned, though I cannot find any evidence of it, that excess might get excreted by the kidneys, and that sweet urine might be a recipe for a urinary track infection. Also, through indirect sources, I've heard that maybe, possibly, perhaps Ribose might correlate with febrile seizures in pediatric cases. Nothing concrete, but I still wouldn't give it to kids. Mind you, I've still eaten kilos of the stuff without running into trouble. And bodybuilders have been using it for a lot longer than I have without mishap.
Now every doctor I've talked to is convinced, absolutely convinced, that I'm seeing a placebo effect. Can't really fault them. It is technically a sugar pill.
I am equally convinced that this works. The effects are just amazing.
You know, at one point I had the cough, I had the heavy weight on my chest sensation, the pain to breath. I didn't make the connection with my arm/leg muscle weakness and fatigue. I took Ribose for other reasons. Half an hour later my breathing was normal. That should have taken days to recover! Half an hour! More than anything else, that sold me on Ribose!
There's another thing too. You're going to think I'm crazy, but... Well, here goes. For the past year I've been skimping on the Ribose. I no longer have to walk miles each day, or lift heavy objects all day. So I don't seem to need it as much. But over time, perhaps a month or two, I starting falling apart more and more. Cognitive impairment, memory problems, fatigue, muscle weakness, etc. It just gets progressively worse. And I notice more and more that I'm waking up many times during the night. Like 5 or 10 times a night. I check the clock. It's still too early to get up. I go back to sleep. Over and over and over again.
Then I start taking Ribose again, at bedtime. Suddenly I'm sleeping straight through the night. My cognitive impairment goes away. My fatigue goes away. I'm a new person!
I can't explain it. It all seems nuts. But there it is. And it's not once or twice. It's repeatable. Consistently! Over and over again!
Perhaps it has something to do with muscle discomfort waking me up. I don't know.
Then again, Ribose has other roles in the body other than making fresh ATP stocks. I mean, it's the backbone sugar of RNA. It essential for protein synthesis. It has a role in intercellular signaling. It's not a trivial sugar.
Funny thing there: Every doctor I've talked to is absolutely convinced that the body makes all the Ribose it ever needs. But that has not been my own firsthand experience. So either all this is psychosomatic, I'm crazy, and it's all in my head. Or all those doctors are wrong.
And if they are wrong, you would think that a Ribose shortage would trigger some fairly significant problems with the musculature, with neurological systems, with cognitively thought processes and working memory, immunologically, even with things like organ function and digestion.
So I guess my question to you folks is: "How crazy am I?"