Hi wiserlady - good to see you checking in again....
Hello I find this very interesting but my fibro came on after taking montekulast and steroids regularly.
You mean the asthma med montelukast/Singulair I think?
Have your ideas re. cortisol/hydrocortisone in the steroids as trigger developed further?
My doctor had no idea at all about it ... the other doctors at the surgery ... no they have no idea either as if to say well that is the end of the matter go away silly woman.
Well, I guess they were right, just they meant themselves ;-).
After long & strongly being told it was not possible to swap GPs in the UK, like here in Germany, I was corrected several times that it is and how to do it. Would that have been an option?
rheumatologist ... ages for an appointment and then saw someone who told me yes it is fibro, research it, ... painkillers and showing you how to do gentle exercise (I was expected to travel twenty miles to be shown how to do these gentle excises when in a lot of pain and no car). I said as for the exercise I can go on you tube or work it out
How do you mean "told", I can't remember: without further tests, altho always indicated?
Which criteria? Did you ever follow this "telling" up by checking the criteria yourself, e.g. the ACR 2016?
Good for you to be self-sufficient regarding the exercises, that's also what I recommend if nothing else is possible, and also if it is. I guess they seemed to "expect" it, because no other PT was nearer?
Did you find good exercises to at least get your local pains down?
The pointer "gentle
exercise" is of course spot on, sounds good that this was mentioned, it isn't always.
surely you can do more than painkillers (which give me side effects like awful stomachs). No he said that is all we can do. So I went off and researched and researched.
You haven't mentioned it, but I'd think your research quickly took you to the meds pregabalin/Lyrica, or gabapentin/Neurontin, duloxetine/Cymbalta and amitriptyline - but because of your experience with montelukast/Singulair and the steroids you wanted to keep away from meds and preferred supps?
And your rheum. didn't know these typical fibro meds? Wow, you have been unlucky. On the other hand it's very individual if rheums know anything much, none of mine did either, didn't feel responsible, which is actually true, because their job is to sort out that it isn't rheumatological, whilst fibro isn't that anyway.
It occurred to me that most of the people who have fibro are female and most of them are past reproduction age and
It only appears so because males and young people are underdiagnosed. After the criteria dropping the tender points test, males have drawn almost level. Due to belated diagnosis, and the accumulation,
aging, additional co-morbidities etc. fibro seems to afflict middle aged or older people, but again that's likely an illusion. Accumulation: 70yo will consist of those whose onset was at 20 and
many of my symptoms started or got worse after menopause and then worse still after hysterectomy. So I researched all that and came up with insisting that they let me try estrogen patches.
Of course hormone changes and operations can add to pain and trying to change the hormones may help that part, altho it may be dabbling in dangerous waters. Did it help? My orthopedist who tried to be a bit naturopathic gave me progesterone which didn't help, and suggested testosterone, but that'd've been for life, and I'm theoretically at the lower end, but my verve thoroughly disfavoured it.
I also started to take magnesium (proper sea natural ) and potassium every day seeing as I found out that my asthma inhalers deplete your magnesium and potassium and this can lead to aches and pains, brain fog, weakness, insomnia etc. Ive been doing all this for a while and need to tweek it and adjust it as it goes along, still a lot of experimenting, but am sure I am onto something and of course the potassium and magnesium are beneficial to me anyway.
I'd suggest getting your potassium tested, if you haven't yet: I did naively take it a while, without it helping, but then found out I actually have too much, which can cause severe problems too. It wouldn't have much to do with fibro generally, it would be your specific form - if it helps. Does it? To be sure it hasn't depleted I've just got it tested again.
Magnesium has a lot to do with fibro of course, but I'm surprised about "sea natural", because that's got absolutely no evidence for being good, except good marketing (see below for a detailed run down).
After studying all the 25 or so magnesium sorts in great detail, I recommend mainly magnesium malate more for pain and/or magnesium glycinate more for sleep, or as laxative form magnesium citrate. Best in without fillers.The 'sea natural' form detailed below contains nothing but one very cheap, common, badly usable, laxative form of magnesium, the hydroxide form, along with 2 unnecessary fillers.
Again this confirms what I often end up with
that most magnesium products that claim to be special are duping us
Have you tried any of the other 30+ supps good for fibro? Just a few exercises and these 2 supps?
If anyone doesn't enjoy me ripping holes in product claims as much as I do, please skip the rest...
I found this on wininhealth, maybe that's your sort?:
"What makes sea-sourced magnesium the perfect magnesium? Sea water has an amazing similarity to the plasma portion of human blood. Although we cannot drink sea water because of its salt content, it does contain the entire range of minerals needed by humans. This led an Irish company to develop a method of extracting these minerals from clean sea water to make the multi-mineral complex called Aquamin Mg that is low in sodium. Then Aquamin Mg was compared to other forms of magnesium. For example, magnesium oxide is the most potent, but not well absorbed. Magnesium chloride is well absorbed but low in magnesium content. Aquamin Mg was found to offer the best of both. It was several times more soluble and absorbable than magnesium oxide. And since it contained 33 percent of elemental magnesium, more potent than the chloride version."
This idea by "an Irish company" (Certified Naturals) is obviously not medical and goes without any logic.
Even if sea water were similar to plasma why should this make it a good source. Should we not then drink plasma instead?! Even if sea water had the entire range of minerals, it wouldn't be in the right doses. If this were an argument, shouldn't they include it in Aquamin Mg, as they even say ("multi-mineral"?)? However it only contains magnesium. Two types combined to one. That apparently makes it "multi". I'm glad they added it's low in sodium, just in case someone believes they're getting more than magnesium, or at least not all
the entire range of minerals, but "all but sodium"? Whoops, where's the amazing similarity to plasma gone?
So what about the sorts. "Magnesium oxide
is the most potent, but not well absorbed" - ehm, sorry, that's a contradiction in terms. It's usually said to be 4% bioavailable, so almost none. And it isn't the most potent, it is the compound with most content of elemental magnesium, around 60%. It's a bit like trying to eat pure magnesium, which is a white metal - not gonna work. It's often put in combinations to slow down the rate of absorption. I prefer spreading the capsules instead.
it's true is better: good for viral stress, diseases, heartburn, constipation, replenishing. Topically for muscle soreness (but there's little evidence for skin absorption).
But looking at what the company say is actually in it - it's Magnesium hydroxide
= Mg(OH)2 which has poor absorption, and is laxative, so is not recommended by some webpages. However wikipedia says this form is "milk of magnesia
", other websites say the oxide
MgO is milk of magnesia. Probably because they're so related, MgO just needs water added. Obviously wininhealth calls this form oxide (combined with chloride), whilst the company calls it hydroxide and doesn't mention the chloride form. According to wikipedia the hydroxide form is easily so cheaply industrially extracted from sea water, which makes it even more dubious that this is anything special.
Like chloride and oxide hydroxide is an anorganic form rather than organic or chelate like the ones I recommended above. And that makes it as "natural" as rocks (mineral, like salt and the minerals we need), but not as natural as plasma (biological with mineral content).
the cellulose causes the least problems for most, while I avoid silicon dioxide and magnesium stearate whenever I can.
stated on the product: "Some people may experience diarrhoea." True.
Finally, the company claims "Aquamin MgTM is a marine-source magnesium and mineral matrix extracted from fresh Irish seawater." - I think I'm right in saying "matrix" just refers to the "natural" origin instead of a synthetic production and would only be relevant if there were several minerals, rather than just the hydroxide. As said, a lot of the (hydr)oxide is extracted from sea water, that's nothing special. Maybe the seawater being Irish is the key to it all. So glad it was fresh, who knows what'd've happen if it were stale and mouldy .... or polluted even.....
My main problem is: Where has the slightly better magnesium chloride now gone that wininhealth mention - it's not in the company's formula!