New here. Was wondering if you all noticed what I noticed...
- Thread starter emmett518
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- DX FIBRO
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- 02/2020
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- DE
There's various things a bit strange at the moment, like emojis sometimes not making saving possible.
To get all new posts you just have to click on -> What's new: New posts. Sometimes I feel that doesn't always work either, with delay ...
wiserlady
Active member
- Joined
- Dec 20, 2021
- Messages
- 37
Hello I find this very interesting but my fibro came on after taking montekulast and steroids regularly. My doctor had no idea at all about it and implied that I had read about various symptoms somewhere and was thinking I had what I had read about as a sort of suggestion. In other words hypochondriac! He said he would ask the other doctors at the surgery if they had any idea of what was wrong and then said no they have no idea either as if to say well that is the end of the matter go away silly woman. I insisted that I needed more and was genuinely ill and my nurse said they would refer me to a chest clinic as I have asthma! I pointed out that my chest was fine and these symptoms had nothing to do with my chest or breathing, he got argumentative and tried to insist, I insisted it must be a rheumatologist and he begrudgling agreed.I waited ages for an appointment and then saw someone who told me yes it is fibro, research it, there is nothing we can do other than 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 for myself. But as for the rest 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.
It occurred to me that most of the people who have fibo are female and most of them are past reproduction age 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. 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 hope you are all coping well and feeling better soon. Thanks for reading this.
It occurred to me that most of the people who have fibo are female and most of them are past reproduction age 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. 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 hope you are all coping well and feeling better soon. Thanks for reading this.
- Joined
- Sep 5, 2020
- Messages
- 3,161
- Reason
- DX FIBRO
- Diagnosis
- 02/2020
- Country
- DE
Hi wiserlady - good to see you checking in again....
Have your ideas re. cortisol/hydrocortisone in the steroids as trigger developed further?
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?
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.
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.
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 40 and 60...
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.
Magnesium chloride 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).
As fillers the cellulose causes the least problems for most, while I avoid silicon dioxide and magnesium stearate whenever I can.
Side effects 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! (any more?)
You mean the asthma med montelukast/Singulair I think?
Have your ideas re. cortisol/hydrocortisone in the steroids as trigger developed further?
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?
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.
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 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 40 and 60...
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'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.
Magnesium chloride 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).
As fillers the cellulose causes the least problems for most, while I avoid silicon dioxide and magnesium stearate whenever I can.
Side effects 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! (any more?)
I went to a neurologist who eliminated all the big scary stuff. I felt like a human test subject with all the test they put me though. I was put on Gabapentin while I went though almost a year of testing. She would literally do 1 test a month, nothing more. It was slow and frustrating. After 3 months on the lowest dose of Gabapentin I had to stop taking it, I couldn't form words and I was completely messing up at work due to the brain fog. The Neurologist sent me to a Rheumatologist who ran more test and decide I had Fibromyalgia. They would only give me gabapentin and because I said I would not take it they released me from care. No information other then "eat more veggies"
I have eliminated all the refined carbs and dairy and it does help some. I have added Magnesium Malate and Vitamin D and B12 ..I am still working out triggers (weather seems to be one) Its just slow going as I figure this out...this forum has been more helpful than all the doctors I have seen.
I have eliminated all the refined carbs and dairy and it does help some. I have added Magnesium Malate and Vitamin D and B12 ..I am still working out triggers (weather seems to be one) Its just slow going as I figure this out...this forum has been more helpful than all the doctors I have seen.
sweetkamie20
Senior member
- Joined
- May 16, 2022
- Messages
- 475
- Reason
- DX FIBRO
- Diagnosis
- 02/2022
- Country
- US
reminds me of my experience (that the pharma company said never happens) - a little bit of depakote and voila! I was living in another dimension
Last edited:
wiserlady
Active member
- Joined
- Dec 20, 2021
- Messages
- 37
Hi, just checking in again, thanks for the comments. The montekulast definitely caused this. Of course doctors do not understand that or want to accept it but I am sure of it. I also found that taking prednisolone would decrease it or increase it a lot quickly. But a fine balancing act with all that goes with it. I am now taking estrogen and serotonin and am feeling far less aches and pains, brain fog etc than before. This is important for me to maintain a life. It was getting to the point where I would feel too worn out mentally and physically to even sit at the computer - which is essential for me to earn a living so that I pay for my house and bills... or walk the dog... or anything simple and normal. I was telling my partner that if he had any sense he would leave, he would be far better off without me as he was turning into my slave come helper come carer full time and he deserved a lot better, but he was not interested. When we spoke about it more recently he said one of the reasons he loves me and wants to be with me is that I research things a lot and am resourceful and think for myself and don't just accept what a doctor who has only met me once says.
I also have another chronic illness - restrictive lung disease - had it all my life but got worse as I get older and shrink. This means my lung capacity is about half of what it should be, which means lack of energy, breathlessness, hard to do chores etc, but no pain with that. I had to nag and nag for the doctors to take it seriously and actually do something about it after being rushed into hospital about fifty times with what they would call asthma, eventually they listened and said oh yes it is restrictive lung disease, not the same!!
I've learnt over the years with doctors they often jump to conclusions and want the easy way out. They wont accept things that mean a lot of work or where they have to really think. If you ask five doctors for an opinion about x you get five different answers, at least four are wrong, so it follows people who are not medically trained will often be wrong too.
If I had a cent for every time some person has tried to advise me I would be able to retire a rich woman. I prefer to work things out for myself. I know my medical history and me far better than anyone else, and know a lot about this stuff. Knowledge is power so the best advice I can give anyone is to research and research and learn, not ask others, others often get it all wrong. They jump in with answers and want a pat on the back but that does not mean they were right. And nine times out of then they do not know you and your situation enough to give advice. Maybe they also lack the knowledge you could have after researching about medical matters.
An example - years ago I had very bad fungal toe nails, I mentioned it in a forum and everyone jumps in with get the stuff you paint on your toe nails from chemist. They forget to mention this has a very very low success rate and over the many months you must use it costs a fortune. IF they had seen my toe nails they would have said no that will not work, your toe nails need something stronger. I knew that. I can see my toe nails and knew that, it was common sense, so I did not waste time and money on getting the very weak solution. I got tablets from the doctor instead. Stronger.And no cost to me. But I remember saying to the doctor, surely if I keep using the inhalers you give me for my small lungs that counter acts it, I've read it on many reputable websites? Oh no he said. It turned out he was wrong and I was right.
So please, think for yourself and get the facts, don't take the easy way out and assume that if someone jumps in with this or that they are right because it is quicker. In the long run it wastes a lot of time and is slower.
People on forums also forget that we are all over the World. I am in England. Get this test and get that test is laughable here.
And with some of the tests it is plain common sense that wins over. We are not able to put everything here it would take hours to type it and hours to read it. But one example. I tried all different forms of magnesium and sea water variety worked best and is worth extra FOR ME. Maybe not for you or others but for me. My partner also needs magnesium and prefers that one. So please do not assume we need lessons in all the different types of magnesium. We had thoroughly researched it and tried many forms. Most people who need magnesium also need potassium, and a little "extra" can only help. So I take that too when I feel I need to. I don't need to get private expensive tests to tell me that.
As for exercise. Nobody in their right mind is going to get a taxi at great expense and travel a long way there and back to do some exercise. Nor lose a day's wages for it. Especially when they need a long rest after ten minutes ! . It also means you can stop after ten minutes if like me ten minutes is your limit. It would take all morning or afternoon to achieve very little and cost a fortune. You know your body. You know how your body reacts to doing this or that. You can also use you tube videos at home instantly for free if this helps. Learn to think for yourself more, be more independent, you should not need a mentor or nanny over something so simple. Even if they had offered me the chance to go to someone nearer I would have said no. It would still be a huge chunk out of my busy day and unnecessary expense.
Perhaps you have all day to spend on this, I don't I work. I help clients, I have other things to do!
I have an exercise bike I use as is right, dumb bells, but most of my exercise is dancing, movement etc, sometimes slow, sometimes gentle, all depends how I am. I also make sure I do mental exercises every day. I am a member of MENSA the high intelligence association,
and it's obvious if you do not use your brain a lot you lose it. I've seen many old people get dementia because they just sit watching tv all day or chatting and never expand their minds or really think. Thinking means problem solving. Not pushing it onto a nurse or doctor or forum and waiting for others to do things.
And with me it is vital to do it because it helps my small lungs too. I need to do various exercises which are specific for my lungs, I do these regularly and often, to help clear mucus etc. But once again it is ridiculous to say go to physio for this. I am not going to spend all of my time and money on going here and there. The physio shows you how to do it, and you can go on you tube, but once they have shown you they leave you to do it yourself. If you can do that yourself you can do fibro exercises on your own yourself at home too.
Some people are their illness, it is all they think and talk about. Some live with their parents and leave their parents to pay the bills and do the chores. I am 65 - I own my own very nice big house, I take care of it, I run a business on my own, I pay all of the bills, I take care of my dogs, I cannot afford the luxury of spending all of my time on my illness or a lot of money on unnecessary expense. It's not mentally healthy to think about nothing other than your illness anyway. It can destroy a good marriage. You could bore your other half to tears with it. It can lose you friends. Some become child like (or already were) when they get a chronic illness. Some hide behind their illness as an excuse to do nothing else and have no responsibility and pass it all on to others. Fatal to those who do it and fatal to those around them. And again it destroys relationships.
Take care.
I also have another chronic illness - restrictive lung disease - had it all my life but got worse as I get older and shrink. This means my lung capacity is about half of what it should be, which means lack of energy, breathlessness, hard to do chores etc, but no pain with that. I had to nag and nag for the doctors to take it seriously and actually do something about it after being rushed into hospital about fifty times with what they would call asthma, eventually they listened and said oh yes it is restrictive lung disease, not the same!!
I've learnt over the years with doctors they often jump to conclusions and want the easy way out. They wont accept things that mean a lot of work or where they have to really think. If you ask five doctors for an opinion about x you get five different answers, at least four are wrong, so it follows people who are not medically trained will often be wrong too.
If I had a cent for every time some person has tried to advise me I would be able to retire a rich woman. I prefer to work things out for myself. I know my medical history and me far better than anyone else, and know a lot about this stuff. Knowledge is power so the best advice I can give anyone is to research and research and learn, not ask others, others often get it all wrong. They jump in with answers and want a pat on the back but that does not mean they were right. And nine times out of then they do not know you and your situation enough to give advice. Maybe they also lack the knowledge you could have after researching about medical matters.
An example - years ago I had very bad fungal toe nails, I mentioned it in a forum and everyone jumps in with get the stuff you paint on your toe nails from chemist. They forget to mention this has a very very low success rate and over the many months you must use it costs a fortune. IF they had seen my toe nails they would have said no that will not work, your toe nails need something stronger. I knew that. I can see my toe nails and knew that, it was common sense, so I did not waste time and money on getting the very weak solution. I got tablets from the doctor instead. Stronger.And no cost to me. But I remember saying to the doctor, surely if I keep using the inhalers you give me for my small lungs that counter acts it, I've read it on many reputable websites? Oh no he said. It turned out he was wrong and I was right.
So please, think for yourself and get the facts, don't take the easy way out and assume that if someone jumps in with this or that they are right because it is quicker. In the long run it wastes a lot of time and is slower.
People on forums also forget that we are all over the World. I am in England. Get this test and get that test is laughable here.
And with some of the tests it is plain common sense that wins over. We are not able to put everything here it would take hours to type it and hours to read it. But one example. I tried all different forms of magnesium and sea water variety worked best and is worth extra FOR ME. Maybe not for you or others but for me. My partner also needs magnesium and prefers that one. So please do not assume we need lessons in all the different types of magnesium. We had thoroughly researched it and tried many forms. Most people who need magnesium also need potassium, and a little "extra" can only help. So I take that too when I feel I need to. I don't need to get private expensive tests to tell me that.
As for exercise. Nobody in their right mind is going to get a taxi at great expense and travel a long way there and back to do some exercise. Nor lose a day's wages for it. Especially when they need a long rest after ten minutes ! . It also means you can stop after ten minutes if like me ten minutes is your limit. It would take all morning or afternoon to achieve very little and cost a fortune. You know your body. You know how your body reacts to doing this or that. You can also use you tube videos at home instantly for free if this helps. Learn to think for yourself more, be more independent, you should not need a mentor or nanny over something so simple. Even if they had offered me the chance to go to someone nearer I would have said no. It would still be a huge chunk out of my busy day and unnecessary expense.
Perhaps you have all day to spend on this, I don't I work. I help clients, I have other things to do!
I have an exercise bike I use as is right, dumb bells, but most of my exercise is dancing, movement etc, sometimes slow, sometimes gentle, all depends how I am. I also make sure I do mental exercises every day. I am a member of MENSA the high intelligence association,
and it's obvious if you do not use your brain a lot you lose it. I've seen many old people get dementia because they just sit watching tv all day or chatting and never expand their minds or really think. Thinking means problem solving. Not pushing it onto a nurse or doctor or forum and waiting for others to do things.
And with me it is vital to do it because it helps my small lungs too. I need to do various exercises which are specific for my lungs, I do these regularly and often, to help clear mucus etc. But once again it is ridiculous to say go to physio for this. I am not going to spend all of my time and money on going here and there. The physio shows you how to do it, and you can go on you tube, but once they have shown you they leave you to do it yourself. If you can do that yourself you can do fibro exercises on your own yourself at home too.
Some people are their illness, it is all they think and talk about. Some live with their parents and leave their parents to pay the bills and do the chores. I am 65 - I own my own very nice big house, I take care of it, I run a business on my own, I pay all of the bills, I take care of my dogs, I cannot afford the luxury of spending all of my time on my illness or a lot of money on unnecessary expense. It's not mentally healthy to think about nothing other than your illness anyway. It can destroy a good marriage. You could bore your other half to tears with it. It can lose you friends. Some become child like (or already were) when they get a chronic illness. Some hide behind their illness as an excuse to do nothing else and have no responsibility and pass it all on to others. Fatal to those who do it and fatal to those around them. And again it destroys relationships.
Take care.
- Joined
- Sep 5, 2020
- Messages
- 3,161
- Reason
- DX FIBRO
- Diagnosis
- 02/2020
- Country
- DE
I'm not aware of it being possible to take serotonin, so I guess you mean supps that increase it like tryptophan, 5-HTP, GABA, theanine or co-factors like B6, NAC, NADH, passiflora, rhodiola?
Yeah, similar here too, but I'm not sure my wife loves me for doing that.. I'll ask..!
.Praps I'm luckier that mine accept things while readily admitting that they haven't the time to take part in my research-searches.
LOL, or 10 different answers.... Again I'm luckier that mine always admit they are guessing, so they can't be wrong in that sense, and I agree with them that most of it is guesswork and needs my validation.
Of all my 50+ docs in the last 3 years I think I'd get 10x1c, all from one orthopedist, actually the first one who started on me. But it'd be fair to take 10.000€ in damages for a few months of additional pain.
I thoroughly agree not to jump on quick advice! Unfortunately many people aren't in the position to do deep searches, for many reasons. My
goes out to them and I very much hope forums like ours can support and help by breaking research down and showing a variety of options with their pros and cons.It is of course very difficult to allow for all situations, unless it is stated when asking for advice, like "bearing in mind". What we try is to offer what in our experience and to our knowledge is possible somewhere and wait for people to select themselves, which they have to for many reasons.
I doubt it's a case of where we are in the world, it's probably more a case of how much money/insurance we have. In Germany I have to pay 300-400€/m for my supps, as they aren't covered, in the UK they apparently are. Insurance here also doesn't cover anything for my MCAS, not sure how that is in the UK.
If someone says "thanks, but" to one of my ideas, I'm quick to suggest cheaper variations.
Ah, now I realize you're talking to me....
So it seems you knew all I wrote already - sorry, I didn't realize that. But what did you base your decision on before trying it? I'd be very interested in the reasoning. If it's helping you better than other forms, good for you, and that alone is interesting. My "lessons" in magnesium types are then not for you two, please disregard it, they are only for people who want to know what the medical evidence seems to be.
Could you also share where it says that potassium is necessary? And do you mean it's wrong to point out that overdosing potassium can be dangerous? Of course taking small amounts in between won't be risky, so good you say that.
Rest assured: testing for potassium is cheaper than one tub of it, even tho that's also cheap.
What can I say?
I never cease to be astounded about your presence here or elsewhere - we are not worthy of it, cleverlady...
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wiserlady
Active member
- Joined
- Dec 20, 2021
- Messages
- 37
I love the way you use your brains to think for yourself and problem solve, you are very much like me.
Too many people rush to a doctor and listen to every word and follow it like lambs to the slaughter, it is even worse if they do it on a forum full of people who say they know when they are less qualified and maybe not at all intelligent. A good example is the person who says they struggle with the illness themselves and are still in a bad state yet say they know what everyone else should do. If they know so much how come they have not cured themselves?
I am pleased to say I am a lot better - what works for me is estrogen and serotonin. I know my fibro was caused by montekulast, some silly person said if doctors say this is not the case they must be right and now I know I am wrong. No. The doctors were total strangers, had never spoken to them before, they did not know my medical history etc, so why assume they are right and I am wrong, that is dumb and offensive. We each have different reasons for our fibro. I believe you start by working out what your reason is. Maybe wheat etc, maybe this or that medication. It's a known fact it is often side effects of medication! I still say that many who take estrogen might feel better, for me I had to push my doctors to get it and if necessary would have got my own secret imported supply. For the first time in ages I can sleep properly and am not up all night wide awake.
I don't come here often because I am not one of those people who have nothing else to do all day and I dont' need advice.
I see here that most people are getting a huge buzz out of reading and replying to posts as if they are educated qualified doctors when they are not. It might make them feel good but it is dangerous, and all about ego, not about helping others.
I've found many times that qualified doctors are wrong so no way am I going to trust someone who is not qualified instead.
i.e. Years ago I had various symptoms and had no idea what was wrong. Doctors kept telling me I was fine. But they were wrong.
I researched and researched and told them it all pointed to underactive thyroid, they insisted I was wrong.
I pushed and had a blood test and was proved right. So don't tell me that when doctors and you disagree they are always right and you are always wrong.
For example. I was told I could go to physiotherapy. It would have been a long way away and I had to make my own way there with problems with getting out, travelling, no car (meaning expensive taxis) and running a business where I am self employed so if I take a day off I lose a whole day's income. The cost of going to one physio session would have been about £1000 then. And when I get there I can do about ten minutes and then have to stop. A very very very expensive ten minutes. Yet silly people who do not use any common sense cannot see that this is absurd and still think you should go - they say well maybe you can find someone nearer! Really? That would not change that I take a day off and pay for taxis and still can only do ten minutes when I get there. Still absurd. The most sensible way to do it is on your own, using you tube if you need help, do it when your office is closed and you are not taking time off of work. You don't need advice on such obvious common sense things. As it is I need to do regular exercises which are for my restrictive lung disease and with those you do them at home on your own, if you can do one at home alone you can do the other at home alone too. They are both just as complicated, time consuming and necessary.
I've seen lots of examples of people who do not think for themselves and often follow stupid advice rather than think. I've also seen lots of examples of people with chronic illness wearing their illness like a badge where it is their whole life as if they have no personality or life otherwise. I wonder how they would cope if their illness went away, they would be like an empty shell with nothing in their life at all. Very sad.And drives loved ones away. I make a point of not going on about all this to my lovely man, because he deserves a happy life, it is not all about me. And a happy marriage is part of life. I refuse to let him become some sort of full time carer, helper, that would be no life for him.
Personally I think many who come here want mentoring and do not think for themselves, others want to believe themselves to be some sort of unqualified wise doctor and on an ego trip. The ones who do not return much or at all are like me. Independent, resourceful, able to make their own decisions
Too many people rush to a doctor and listen to every word and follow it like lambs to the slaughter, it is even worse if they do it on a forum full of people who say they know when they are less qualified and maybe not at all intelligent. A good example is the person who says they struggle with the illness themselves and are still in a bad state yet say they know what everyone else should do. If they know so much how come they have not cured themselves?
I am pleased to say I am a lot better - what works for me is estrogen and serotonin. I know my fibro was caused by montekulast, some silly person said if doctors say this is not the case they must be right and now I know I am wrong. No. The doctors were total strangers, had never spoken to them before, they did not know my medical history etc, so why assume they are right and I am wrong, that is dumb and offensive. We each have different reasons for our fibro. I believe you start by working out what your reason is. Maybe wheat etc, maybe this or that medication. It's a known fact it is often side effects of medication! I still say that many who take estrogen might feel better, for me I had to push my doctors to get it and if necessary would have got my own secret imported supply. For the first time in ages I can sleep properly and am not up all night wide awake.
I don't come here often because I am not one of those people who have nothing else to do all day and I dont' need advice.
I see here that most people are getting a huge buzz out of reading and replying to posts as if they are educated qualified doctors when they are not. It might make them feel good but it is dangerous, and all about ego, not about helping others.
I've found many times that qualified doctors are wrong so no way am I going to trust someone who is not qualified instead.
i.e. Years ago I had various symptoms and had no idea what was wrong. Doctors kept telling me I was fine. But they were wrong.
I researched and researched and told them it all pointed to underactive thyroid, they insisted I was wrong.
I pushed and had a blood test and was proved right. So don't tell me that when doctors and you disagree they are always right and you are always wrong.
For example. I was told I could go to physiotherapy. It would have been a long way away and I had to make my own way there with problems with getting out, travelling, no car (meaning expensive taxis) and running a business where I am self employed so if I take a day off I lose a whole day's income. The cost of going to one physio session would have been about £1000 then. And when I get there I can do about ten minutes and then have to stop. A very very very expensive ten minutes. Yet silly people who do not use any common sense cannot see that this is absurd and still think you should go - they say well maybe you can find someone nearer! Really? That would not change that I take a day off and pay for taxis and still can only do ten minutes when I get there. Still absurd. The most sensible way to do it is on your own, using you tube if you need help, do it when your office is closed and you are not taking time off of work. You don't need advice on such obvious common sense things. As it is I need to do regular exercises which are for my restrictive lung disease and with those you do them at home on your own, if you can do one at home alone you can do the other at home alone too. They are both just as complicated, time consuming and necessary.
I've seen lots of examples of people who do not think for themselves and often follow stupid advice rather than think. I've also seen lots of examples of people with chronic illness wearing their illness like a badge where it is their whole life as if they have no personality or life otherwise. I wonder how they would cope if their illness went away, they would be like an empty shell with nothing in their life at all. Very sad.And drives loved ones away. I make a point of not going on about all this to my lovely man, because he deserves a happy life, it is not all about me. And a happy marriage is part of life. I refuse to let him become some sort of full time carer, helper, that would be no life for him.
Personally I think many who come here want mentoring and do not think for themselves, others want to believe themselves to be some sort of unqualified wise doctor and on an ego trip. The ones who do not return much or at all are like me. Independent, resourceful, able to make their own decisions
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wiserlady
Active member
- Joined
- Dec 20, 2021
- Messages
- 37
By the way. amatriptyline is something I tried and gave me terrible stomach aches.
I tried all sorts of normal medication before I turned to natural things.
And although it is rare I come here when I do my time is limited. I am not interested in being lectured or talked to as if the person on here is some sort of unqualified doctor who knows it all and talks down to me. I put such people on ignore. I am 65 years old, very successful in life and a member of MENSA, I don't need advice about how to spend my time or money or which direction to go in.
I've proved that by doing a lot of research and thinking for yourself you can feel a lot better, IVE DONE IT.
I tried all sorts of normal medication before I turned to natural things.
And although it is rare I come here when I do my time is limited. I am not interested in being lectured or talked to as if the person on here is some sort of unqualified doctor who knows it all and talks down to me. I put such people on ignore. I am 65 years old, very successful in life and a member of MENSA, I don't need advice about how to spend my time or money or which direction to go in.
I've proved that by doing a lot of research and thinking for yourself you can feel a lot better, IVE DONE IT.
cookiebaker
Very helpful member
- Joined
- Jul 26, 2022
- Messages
- 808
- Reason
- DX FIBRO
- Diagnosis
- 07/2022
- Country
- US
- State
- WI
....and like so many other members of that group that I have come across over the years, you seem to like shoving that in people's faces. (for what it is worth, i probably could be a member, but have no desire to be because of this kind of attitude)
you do not need to be a member of MENSA to think for yourself, do your own research, or advocate for yourself with doctors/therapists.
Also, please be aware that what works for YOU, may not work for Me, or anyone else, for that matter.
wow, talk about condescending...
If you find it so useless, then why come here at all?Rudeness and bullying are huge pet peeves of mine.. there is no reason to be rude, or a bully. If you do not find the forum helpful, then dont use it - pretty simple, really. But to come in here, and start berating and belittling people is just.... ugh! *Hits the ignore button*
Have a nice life.
- Joined
- Dec 2, 2016
- Messages
- 3,531
- Reason
- DX FIBRO
- Diagnosis
- 00/0000
- Country
- US
@wiserlady ,
I agree with the comments stating that you are being condescending.
To say that people on this forum must "have nothing else to do all day" because they post on a forum (while, I note, writing long and time-consuming posts yourself) is insulting. We are not here to insult others, no one has insulted you, and this is uncalled for.
People are here to help one another. If you don't need that particular advice, that's fine but there's no need to put others down for trying to help. If as you state you do not need advice and see this forum as being so unhelpful then I have to wonder why you come here at all. You indicate you don't want to be lectured; other people on this forum don't like being lectured to either, which you are doing while accusing others of doing it.
Keep your posts civil or you may find they are edited or removed.
Thank you.
I agree with the comments stating that you are being condescending.
To say that people on this forum must "have nothing else to do all day" because they post on a forum (while, I note, writing long and time-consuming posts yourself) is insulting. We are not here to insult others, no one has insulted you, and this is uncalled for.
People are here to help one another. If you don't need that particular advice, that's fine but there's no need to put others down for trying to help. If as you state you do not need advice and see this forum as being so unhelpful then I have to wonder why you come here at all. You indicate you don't want to be lectured; other people on this forum don't like being lectured to either, which you are doing while accusing others of doing it.
Keep your posts civil or you may find they are edited or removed.
Thank you.
EzbG
Active member
- Joined
- Sep 4, 2022
- Messages
- 44
- Reason
- DX FIBRO
- Diagnosis
- 08/1997
- Country
- US
- State
- CA
I wish eliminating foods worked for me… if I eliminate many more, I’ll starve! 
. I have food allergies, so, NO tree nuts, NO soy, NO wheat, NO melon, and NO HFCS - which is in everything!!! When I removed HFCS, I lost 20 pounds in 4 weeks, just from inflammation.
90% of what I eat is home made (hubby can still eat out for lunches while working) and organic, to avoid the antibiotics in meat/poultry, but I’m beyond bored with the little I get to eat.
I am still making changes, though. Because we make our own dog food, the vet was telling me about leptons - which cause inflammation, and to switch the rice in their food from brown to balsamic rice. So we switched, too. Different taste, but we like it. (We use rice instead of pasta.)
. I have food allergies, so, NO tree nuts, NO soy, NO wheat, NO melon, and NO HFCS - which is in everything!!! When I removed HFCS, I lost 20 pounds in 4 weeks, just from inflammation. 90% of what I eat is home made (hubby can still eat out for lunches while working) and organic, to avoid the antibiotics in meat/poultry, but I’m beyond bored with the little I get to eat.
I am still making changes, though. Because we make our own dog food, the vet was telling me about leptons - which cause inflammation, and to switch the rice in their food from brown to balsamic rice. So we switched, too. Different taste, but we like it. (We use rice instead of pasta.)
cookiebaker
Very helpful member
- Joined
- Jul 26, 2022
- Messages
- 808
- Reason
- DX FIBRO
- Diagnosis
- 07/2022
- Country
- US
- State
- WI
i like Jasmine rice myself, but balsamic will do as well.
- Status
