xlynx:
That's really interesting. I was much the same during my 'active' stage, I suppose. I think it'd be very interesting for you to try a magnesium solution on the skin. (I really recommend a small dose first - I reacted to little more than a drop of magnesium oil on my fingertip at first!)
For me, the sensation felt mildly euphoric, uplifting, but just a little overwhelming too. It tends to last about an hour, tops. But if you start with small applications and work up, I think you get your levels up and you can tolerate more. The thing with magnesium deficiency, as far as I know, is the body gets bad at absorbing it when it's low. So I think *now* taking it orally keeps me topped up - back then I don't think it was doing much.
(Magnesium oil or if you can find a supplier of magnesium chloride powder, and mix it about 50:50 with water until it dissolves. Epsom salts are a very affordable alternative, although I've heard some say Chloride, which is what you get in magnesium oil too, is slightly safer.)
I'd also consider Vitamin B3 (Niacin). That can have a calming effect similar to valium, and in my CFS bloodtest, B3 was found to be low. It's also involved in energy production. (I take 500mg Niacinamide daily - it's one of these supplements I suspect helped a LOT with calming my nervous system down. I also take fairly high doses of the rest of the B vitamins in my Biocare Multivitamin. Probably everyone with CFS should be.)
Omega 3, I take 4x VegEPA capsules at the moment. Sometimes I take 2x Omax3. I think I get around 2g Omega-3/day. And it's quite important it's from a good quality source, as I hear some Omega 3 capsules can be quite high in mercury.
Have you tried the Buteyko technique too?
- A good quick test is to pause your breathing, naturally, on an out-breath; pinch your nose; and count the seconds on a clock until you feel the need to breathe in again. (It's called a Control Pause.)
- This gives you a rough idea of your CO2 tolerance - which gives you a rough idea of whether you're habitually over-breathing... Buteyko guys say the ideal is 60 seconds - most healthy people I know seem to score around 35 seconds... Most bad over-breathers seem (like me, back then) tend to score around 10-18 seconds.
Over-breathing
can lead to that CNS effect you're describing, and it tend to make the body offload magnesium and make it very hard to get levels back up.
Might also be worth trying L-Glutamine, 10-15g/day. (Sound like I'm a supplement salesman! But a lot of CFS people are low in it; it's cheap and safe; and the body uses it to make GABA - which is a relaxant/anti-anxiety neurochemical... It's also used to make Glutathionine and Glutamate.)
*Something* I take has definitely helped there. PS - check Zinc too if you score poorly on the overbreathing thing. (Or white spots on fingernails probably indicate Zinc deficiency - not 100% sure whether that's reliable.)
For sleep I don't actually take anything now - I remember back in my worse days I once went 5 days without a wink. Some might find the amino acid L-Tryptophan helps. Or Melatonin.
Maxine:
Hey! Great to meet another magnesium evangelist! My specialist's a very big fan, obviously. She sees a lot of people get better on magnesium and B12 injections alone.
Apparently when our cell walls are damaged, it's harder to hold on to magnesium - (someone will know the exact details there!). So being able to hold on to magnesium's one of these things that seems to have got better very gradually, possibly as I've been taking things like Omega-3 which improve cellular integrity (?).
One of the best supplements I take (which might only be obtainable by Myhill's patients in the UK) is Myhill's Magic Minerals, which has magnesium and calcium in about equal balance. Also has about 11 other minerals in just the right balance for CFS. I think boron (?) helps keep magnesium levels balanced to. It's also got things like Iodine which help detox heavy metals, and a decent amount of Zinc.
Getting magnesium levels up is probably the keystone to recovery for a lot of us. Such an important mineral, as you say, and quite difficult to get levels up - even more difficult to test for (I don't know why doctors bother with serum level blood tests!?! Just so they can say "Well, there's nothing wrong with these tests..." perhaps??). I think a combination of a good oral supplement with occasional use of a solution on the skin should do the trick though - I never liked the idea of injections!
susan:
Of course, I remember you telling me now!
I think getting your amino acid levels rebalanced and supplementing magnesium is the way to go. Are you taking a good multivitamin and good high doses of B vitamins too?
I can't be 100% sure what it was out of my supplement protocol which made all the difference there, but I went from years of feeling incredibly wired/stressed/anxious when the doorbell rang, or there was a storm outside, or even talking on the phone, to being completely at ease and calm again within quite a short time of starting my program really. I'd tried therapy and things there, but I didn't need any of it once whatever brain chemical imbalance or nutritional deficiency I had was corrected. (As I was saying above, I think L-Glutamine, magnesium and B3 (Niacinamide at 500mg/day) may have been key to resolving that. But I could be totally off there of course. But low Glutamine is common in CFS, and low Glutamine should also mean low GABA - which is an anti-anxiety medication I think.)
Yeah, I think the breathing problems in CFS are possibly caused by the cells in the body going slow (the mitochondria going slow) and producing less 'exhaust gas' basically - CO2.
Whether it's cause or effect is a chicken and egg question maybe, but I think while most people can get away with breathing maybe 3 times too much, I think us CFS lot have to actually aim for breathing closer to the ideal, of not over-breathing at all. (As overbreathing's more about low CO2 than it is high Oxygen. The balance is what's important in respiration.)
And I also think as my body's started producing more energy again, I can breathe more, and overbreathe more, without symptoms or problems as I've got more CO2 being pumped into the system anyway.
I've not heard anyone mention this theory apart from Rich Van K (who I notice posts here!), but I think it makes a lot of sense of my blood test and symptoms.
Getting enough Zinc by the way? I never realised, but apparently it's almost as important as magnesium in keeping the breathing rate healthy. Myhill's website mentions exactly why, somewhere!
