Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
i had something similiar when i went of the glucose. i had 70g per day divided in multiple drinks over the day. tampered of by 5-10g per week. when i reached 20-25g per day i felt best , then replaced it to 0g and then things went a bit unwell again.
While there's no reason to expect it would work the same for you, the reason I didn't try strongly for more prednisone after the second prescription was because I found that cumin was just as effective. Just as effective, cheaper (bought a big bag from the bulk section), no need for a prescription, and no known scary side-effects. Unfortunately, after a few weeks of a daily spoonful of cumin, I had to accept that it was no longer working. The important part is that I knew there was some way to switch my ME off (although I didn't know about ME at that point) and that three (iodine worked too) completely different chemicals managed it, so I just had to find the right one and a way to make it keep working. Still haven't found that.
A lot of people seem to like to think of ME as involving some really simple, isolated system: a virus hiding somewhere, or not enough of one molecule produced in mitochondria, or low blood flow. Instead, the body is composed of a vast number of systems interacting, and ME involves or is potentially affected by thousands or millions of subsystems. For one person, maybe the gut microbiome is involved, possibly in several separate ways. Another person was born with a slightly different blood vessel arrangement, and might be sensitive to blood flow modifiers. Another person has their blood vessels differing from average in the opposite way, so they respond the other way to modifiers. I don't have much hope that researchers will discover the root cause of ME by studying symptoms or responses that only affect a fraction of PWME, especially ones where different people have opposite responses to treatments. I'm a lot more hopeful about new discoveries and technologies, such as the recent one about certain bits of DNA affecting rare types of t-cells, causing some diseases. We need that "everyone with ME has this abnormality" discovery.
I might just have to try that.I am literally sleeping ten hours, then getting overwhelmingly sleepy around eight in the evening and falling asleep on the sofa. When I wake, I feel really weak and exhausted.
