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.
Hi Frickly, why reintroduce it back into the body?
In summary, the way I think about it, right or wrong, is this: if there are scores of potential triggers, some acting immediately and some delayed by hours, then even after you've figured out all the secondary and tertiary symptoms, you're not going to easily observe the primary triggers in action until you've already worked out or guessed most of them, and although you get tantalising clues before that point, there's so much background noise that all your theories keep apparently falling down. Don't lose hope and trust your feelings: don't be put off by confusing observations, accept that it really is as complex as it seems. There's so much to complicate the picture: some or all of food sensitivities, invisible environmental triggers, hormonal triggers (making the process I've described dramatically harder for women of course), viruses, inflammatory events, and more I'm sure.
I hope this isn't all just frustrating to read, I know it would have been for me a few years ago so I'm sorry if so. All I can do is share what worked/works for me - for the time being at least - and hope it's helpful to somebody. :Retro smile:
That gluten-free bread is vile though!
Yes, it's incredibly complex Mark. One very wise consultant said to me recently that we probably only currently understand less than 10% of what goes on in the body. I certainly haven't lost hope
For me, I think most of what's going on is the illness taking it's natural course, whatever that entails. But what's so difficult to come to terms with is that on the one hand the sense that it has a life of its own and so you have little control over it, but on the other you have to constantly think about what you should and shouldn't be doing so that you don't get worse.
I suspect that one of the things that's going on is that we've got a large number of pathogens which we've collected over the years due to immune dysfunction. Some of these will be pathogens that haven't yet been discovered. The only thing to do is to keep trying different things, just on an empirical basis. But I've almost reached the conclustion that I might as well just pick things at random.
So glad you are feeling better on your diet.
Jenny