I made a note to look at Austin Goh's youtube exercises
But careful, Austin Goh is just one example, we have to shop around on exercises.
& will add Bruce Hoffman/Hoffmancentre to check out
He I greatly recommend, altho I don't use any of his med recommendations, just the supps.
but I struggle with online instructions/information & I have to write everything down so I don't forget, which of course, having Fibro Fog etc, I would!
Same here, I've got tons all over the place. Then I realized I can't find them quickly if I write them on the forums, so now I make sure I copy them into my digital notes on my laptop specifically for that, neatly sorted into numbered files (one place for all my life areas works best for me, but searching has to work perfectly and the searches on forums don't).
Youtube exercises it's good to try out first, while they're talking and only take notes if you think it's right for you. Just copy the links for future reference. And make sure you change the "filter" (top left or right) to "videos", otherwise youtube limits what we see and tries to distract us.
Hoffman's recommendations are so short and clear, just a list of his A-, B- and C-team of supps, partly with dosage recommendations.
Generally: you're welcome to ask, or for any MCAS details pm me. Some people say everyone should do their own research as part of their self-advocacy. I disagree, I don't think everyone can, praps most people, esp. with our conditions, our fog etc., so it's good to stand on each others' shoulders...
Plus, have to be careful not to overload myself & be in the right frame of mind to absorb information, however temporarily lol.
Oh definitely, don't feel obliged, prioritize as you think. I'm surprised how quickly you're on to MCAS supps already.
I have been researching on & off since I became aware of having all the symptoms of M.C.A.S.
& results so far are long lists of what food/drinks etc I need to avoid, tragically including Chocolate & Alcohol
& a much much shorter list of what I can eat/drink, which contains very little, if anything, I'd like to eat/drink
& I've been plunged into an even deeper depression having to come to terms with all this & tbh, I don't think I ever will.
The researching part I'm sort of glad to hear, if it weren't for the downsides.
I think alcohol is a #1 to stop, if in any way possible. But I personally don't react to
dark chocolate, and maybe you'll be able to start again. Having no choice, cos of reducing sugar for lipids, I have managed, and found 2 sorts that are as tasty to me as milk chocolate, one 70%, one even 85%.
I have 50 things I can eat/drink, but I like most of them. I actually use the SIGHI histamine list to expand to find new things or things I've forgotten. Also I manage to develop my taste for things. Actually, I've lost my enjoyment of normal chocolate, prefer the less sugary taste.
Before diving into all these new things which you don't really "want", "desire" to, it might be more important to delve into the concept of "radical acceptance". That can take the depression, and motivate. The physical side is about compromises and finding our individual ways, and that needs to allow for the mental part. Trying an TCM practitioner in January and diving into her bitter herbs and diet recommendations I quickly ended up with loss of appetite, which later when other things did the same, made me bitter and oppositional. So I had to backtrack and make sure I only do what I really want and am well prepared to do. I have then been able to take on a few more things, but by far not all. Some day I may try it again, but I've found things that seem to be more effective and more suiting and fitting to my life.
Am also grappling with a whole new world of expense, reckon I should buy Shares in Holland & Barrett,
Ah, yes, my 42.. supps in perfect quality now cost me close to 500€/m..., despite self-encapsulating powder in about half. So I'm not saying trying my way will be cheap. It's ironic that my insurance doesn't have to pay much for me any more, after I've left most docs and the physios behind me.
at least the toxic stuff is free, same as the Meds I've attempted to replace as follows...
Day: Quercetin Vitamin C Curcumin Night: Glycine
Just to confuse you further:
My hyperacid stomach doesn't tolerate curcumin, also not normal vit. C, so I use sodium ascorbate, and even that in capsules.
glycine works paradox, it wakes me up, so I took magnesium glycinate in the mornings, now I've switched to magnesium threonate all day. But glycine I haven't got on my list, actually, why do you take it, is it for sleep?
Quercetin generally I've taken high dose since my first jab, but in between, I think after the 2nd jab, I didn't tolerate it, and needed a month or two to wean it back in.
Last blood tests showed I had zero Folic Acid & got given a prescription but had to buy it since, though now suspended due to an apparent Kidney risk if taken along with Indapamide (?)
Yeah, I got a scrip for several things, like D and B12, but then realized the insurance only pays for the cheapest forms, which work badly....
Not sure, but maybe there is something you could take to protect your kidneys. Like I take TMG to protect I think it's my liver from the high dose B3 I'm taking for lipids.
Ah, in TMG the G is glycine.
I can't remember why I was put on Indapamide but think it might have been in the midst of the height of personal ongoing trauma,
(along with a lot of other prescription meds) but I don't now have high blood pressure at this present time as far as I know
but it claim to 'widen arteries' which I thought/think might help ease the Pulsative Tinnitus, which could be due to narrowing arteries
& because it's a diruetic which I need as my ankles etc get very swollen, especially at night - there's that night thing again!
I can see the 2 reasons - that's what you could look for if you stop and then start again.
So it seems i'm damned if I don't stop it & damned if I do,which is fast becoming a very familiar scenario these days.
Eg. Have to avoid Dairy so swapped to Vegan Milk but it's highly processed & full of additives (?!)
Yeah, totally normal, it's about decisions, compromises and ideally finding a 3rd possibility, to not be damned. I don't think my almond milk is much more processed than my dairy, praps it is, but it hasn't any additives, so with these conditions we have to look more and more. To find the perfect supp with only HPMC capsules (vegan), not gelatine, "no" excipients, and cheapest best, I need to compare 10-100, which takes ages (CoQ10... *sigh*). It's a relief I'm thru with that essentially, and can usually rely on my previous research plus any bargains of the cheapest best suppliers. But that's only possible bit by bit.
It's always complicated. But the image of being damned is unhealthy in itself, there we're back to our mental state being fundamental for everything we do physically. Instead of worrying or sorrowing I play this like a game of rummy, calmly, taking my time, and without looking to "win", just looking to get onwards and upwards.
).
