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Fibromyalgia and the Gut Microbiome
- Thread starter Dolphin
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PDF of that edition of the Global Chronicle available for download here.
https://let-me.be/download/54/the-me-global-chronicle-20191222
https://let-me.be/download/54/the-me-global-chronicle-20191222
(Traduction google) McGill University, Montreal, Canada has a reputation for excellence around the world. And the fact that she is dealing with this issue is really stimulating (for the research cited above). Personally, I had a 3 x diagnosis of very severe fibromyalgia in the 90s. That of ME came later. It was by following a hypotoxic diet (early 2011) (recognized in France for various diseases) that at least 55% of my pain disappeared. And now no need for anti-inflammatory drugs and severe ME has become moderate, functional at home. Which is not nothing. I very much believe that we must have a truly basic diet with the least possible amount of chemical or other additions to our food.
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Invisible Woman
Senior Member (Voting Rights)
I definitely do better with a very simple diet with the fewest possible processed ingredients. Also reduced carbs. I think (for me) this is more to do with keeping IBS well controlled and how the IBS affects ME and ME related pain. I don't know if I have fibromyalgia.
I'm afraid I must also insist on dark chocolate.
Invisible Woman "I don't know if I have fibromyalgia" I encourage you to see a doctor for your diagnosis of fibromyalgia. People with ME have about 65% the possibility of having fibromyalgia. And if it could make you diet that would help you have less pain, it would be great, no.
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Invisible Woman
Senior Member (Voting Rights)
I already have been assessed. A couple of the trigger points were very tender and the rest weren't. The rheumatologist who examined me seemed.very.....determined that the pressure points should elicit a stronger reaction.
He was pressing the points so hard I could see he was exerting himself and he was looking at me with something akin to disbelief. What could I say - I could feel he was applying pressure, it just didn't hurt. So, he decided I might possibly have fibromyalgia. I guess it's equally possible I haven't.
I'm not really bothered about it as collection of another diagnosis isn't going to do much for me. I already explored many of the pain relief options and they didn't help.
I have done a lot of work on my diet with professional guidance. Apart from any improvements associated with getting IBS under control it makes no difference to pain levels or my ME.
I'm not saying dietary changes wouldn't help other people (I'm certainly not qualified to do that), it just didn't do anything for my pain levels.
No worries, there is actual research that dark chocolate is good for creating a happy microbiome environment. >80% cacao and it's all good. At least I don't feel the dark chocolate I eat in any way diminishes the general high nutrient diet I have
I believe diet should be used as part of treatment when people are ill. And sadly, professionals are not taught a lot about this unless your illness is metabolic syndrome/diabetes/heart/celiac disease. It could be so much more. I have less pain when I eat my whole-food nutrient-dense diet, and I believe it helps my ME. I possible to do a blinded study on myself to check though. Do I crash because I eat something I shouldn't have (or didn't eat something I should), or did the crash do so that I had to do simple changes to the diet? Most cases I have the same diet when I crash, so the diet doesn't cure me, but I do believe it makes the level of exertion required for my PEM to kick in higher.
Invisible Woman
Senior Member (Voting Rights)
Don't get me wrong, I think eating the best possible diet can only be a good thing for anyone whether they're an ME patient, a diabetic or a perfectly healthy individual. However the best possible diet for me and the best possible diet for you might be rather different things.
I have spent a lot of time and money on diet. When I first became ill diet, leaky gut and candida overgrowth were considered to be one of the root causes. I got a lot of benefit out of improving my diet, but none of those benefits improved my ME in and of itself.
Getting severe IBS (that other family members also suffered from and that predated my ME) under control only helped in that I wasn't experiencing the gut and chest pain that goes with that, plus the frequent trips to the loo. That's not nothing.
I also have a fairly wide range of allergies and still occasionally develop a new one. Simplified diets not only cut a lot of that out, but also makes it easier to identify new ones. Some of the mild allergic symptoms can feel a bit like the onset of PEM. Getting rid of those can only help.
However, over the years I have seen people hunt the Holy Grail of a diet they may think will make a huge difference or even cure them. I've even heard people say their diet has cured them - I would venture that if diet alone cured them they were misdiagnosed originally, which isn't to say they weren't sick.
It is very easy for diet to become another stick for sick patients to beat themselves with when desperate for a cure. I've seen people go to quite lengthy extremes, risk malnourishment, put themselves into PEM in cooking specific foods in specific ways without any professional input and no science behind it.
I have even had other people try to insist that i should stop taking the levothyroxine I have relied on for over a quarter of a century and cure myself with a diet.
By all means look to improve diet in a sensible and safe way. Just don't pin hopes of a significant improvement or cure on it.
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Agreed. But even if the diets might look different, include different things, they still generally have something in common. Like nutrient density.
I must admit I am one of those that think diet can make a huge difference in someones life. And I don't think people who talk about a diet "curing" them necessarily mean they are now completely cured, in most cases (at least in the forums I frequent) they have to stick to the diet to continue having the improvements they experience. So it's like a type of medicine in that way. I don't say I've been cured by my diet, but it has enabled me to do more things in my daily life, and that makes a huge impact on my quality of life. And then there's sleep, sunlight, physical activity levels etc.
In a 2017 study people with inflammatory bowel disease were put on a nutrient-dense antiinflammatory diet, clinical remission was seen in 11/15 participants in five weeks. And they were still in remission for the reminding six weeks of the study. That's very good numbers. Sadly, studies like these aren't done often. They were not cured - but the disease was not manifesting itself. Now, a lot of antiinflammatory/anti-cancer/insert-positive-word-here compounds in food will only be able to act on the cells of the gastrointestinal tract where they can reach high enough concentrations to have a biological effect, which means that for diseases where the problem lies elsewhere it probably won't do as much good. Then again, disruption of the intestinal barrier/leaky gut is observed in most chronic illnesses, also ME. And like you experienced with your allergies, improving intestinal barrier integrity if it has been impaired can also only help.
Sadly, for intestinal barrier health I would not seek the help of a registered dietician as we (to clarify, I am still just a student and not registered) simply learn next to nothing about these things. Neither do most doctors (who also, in my experience, don't learn much about diet either). Neither do we learn much about the microbiome. Yes, it's possible to find extreme types of dietary changes that are not sustainable for a sick person (or for a healthy person for that matter, some of that can be found is flat-out unhealthy!), but I don't think those are necessary, a lot can be done with perfectly normal foods that require little prep-work.
You could have the best diet and lifestyle in the world but still have disease, and if medicine is available and works then of course it should be used. Some get carried away and think everything can be cured if you live "just right", but that's just not the case. That some people give unscientific advice does not mean everything about these things are unscientific.
Invisible Woman
Senior Member (Voting Rights)
No, I have had people tell me it's cured them. Literally that. I have had great success controlling IBS with diet, as long as I continue to eat a certain way, although (after years of being strict) I can allow the odd treat. So I do understand the distinction.
I have never had proof my gut was any leakier than anyone elses, therefore improvement in my allergies has more to do with avoiding those foods than to do with said barrier. This is something I spent a lot of time, money and energy on.
With regards to barrier health I agree, but then I'm not convinced there is any particular barrier issue in my case. However, in my own case I saw someone who was an allergy expert and without whose help I wouldn't have identified a lot of the allergy issues happening.
In my case there were two distinct issues - probably connected to some degree - IBS and allergy. However my allergic reactions do not necessarily involve digestive symptoms.
Indeed. My own diet is simple, basic and doesn't contain fancy ingredients (dark choc aside). Prep work however is another matter and that depends on the severity of your condition and the amount of support you have.
As we agree we should all eat the best diet we can manage. However, if a person doesn't have the capacity to always prepare a fresh meal and does sometimes have to rely on pre prepped food I don't think they should beat themselves up about that either.
Then we have different experiences, and that's ok. I feel "cured" is being thrown around a bit like "recovered" in some ME communtites, where there is a * at the end and in small letters you can read that objective measures of health are still way lower than a healthy person.
I'm not quite sure I get what you are saying here, if you have an allergic reaction that immune respone will trigger events that lead to a more permeable barrier (to allow easier access for immune cells for example), this can cause a loss of barrier integrity even if the barrier was ok to begin with. With a leaky barrier, there is a response even if there are no allergies that causes the immune system to react to that specific food. And the problem would (in theory) disappear if barrier integrity is restored. People with reactions to many foods may actually only have a strong reaction to one, but since that food causes the barrier to become leaky they react to all other things as well.
I'm glad you found someone knowledgeable that could help! My milk protein allergy does not give me digestive issues either, but skin rashes and cognitive impairment. That there are no gastrointestinal symptoms is unfortunately something that reduces the chance for someone to look at the diet.
I believe barrier issues are common in most if not all chronic diseases, including ME. That's not to say it's there all the time, but is present when the disease is worse (like in PEM). In ME there is the observed increase of bacterial translocation from the gut after an exercise study, and the metabolome study that showed an increased absorption of some non-completely digested sugars that shows up in the blood when the intestinal barrier is leaky. That the intestinal barrier is impaired after exercise is normal, but our bodies don't seem to deal with normal and that's why I think this is important. Improving barrier health could potentially mean less problems after exertion (this does not mean it is the root cause of PEM).
Of course. I am mild (moderate when I overexert myself and the occasional days-weeks spent mostly in bed or on the couch) and the mild periods gives me much more freedom. I also live with someone who can go shopping or prepare meals if I am unable, which makes me very privileged.
I don't think people should beat themselves up for buying preprocessed foods, if that's the situation and nothing can be done about it there is no need to add more distress to your day. But, I don't believe a diet like that can provide the body with all it needs long-term, especially not when ill. If it is a long term solution I hope there is some help to figure out if all dietary requirements are met. Not just for better quality of life here and now, but also in regards to long term health. Being unable to be physically active makes us a population at risk for many lifestyle related diseases, and diet is one of those things that can reduce that risk.
Invisible Woman
Senior Member (Voting Rights)
As you say @Midnattsol we have different experiences. I understand this is a passion of yours and it's something I went through as part of initially trying to find a cure and then just hoping for management techniques. Apart from generally eating well & being as healthy as possible it is not a passion of mine.
I stand by what I have said. I have been through all the protocols for leaky gut etc. They didn't work in my case. The person I worked with over a number of years also concluded this wasn't working for me.
Diet is just one part of the picture. The individual has to decide for themselves what they will spend time, money and energy on. Some people might find massage helps them, others diet, others something else entirely.
In the interest of shared experience, as I would with any other changes to lifestyle or treatments that I had experience of, I have shared mine.
I found diet helpful in managing IBS, identifying foods that triggered allergies and nothing else. It didn't reduce pain, it didn't improve my ME. Sorry if that's disappointing for someone to hear, but that's my experience. I got what benefit I could and moved on.
Having shared my experience for people to take or leave as they choose I am now done with it.
Edit - to correct tag
I stand by what I have said. I have been through all the protocols for leaky gut etc. They didn't work in my case. The person I worked with over a number of years also concluded this wasn't working for me.
Diet is just one part of the picture. The individual has to decide for themselves what they will spend time, money and energy on. Some people might find massage helps them, others diet, others something else entirely.
In the interest of shared experience, as I would with any other changes to lifestyle or treatments that I had experience of, I have shared mine.
I found diet helpful in managing IBS, identifying foods that triggered allergies and nothing else. It didn't reduce pain, it didn't improve my ME. Sorry if that's disappointing for someone to hear, but that's my experience. I got what benefit I could and moved on.
Having shared my experience for people to take or leave as they choose I am now done with it.
Edit - to correct tag
I'm not disappointed by hearing your experience. Like you say, diet is just one part of the picture, I have not meant to give the impression that diet is the only important thing.
I am currently writing a thesis on epithelial barrier integrity in health and disease, so I might get a bit carried away
I really like the discussion here. I experienced considerable improvement by changing my diet 8 years ago. I was severely bedridden and am now moderate. I had been offered this book on the diet which dealt with inflammation (it is translated into English. It is written by a retired microbiologist Jacqueline Lagacé, translated into English (The end of pain, traduction 2014) who did career teaching at the University of Montreal at 3 levels (bacc., master's, doctorate with research chair). She herself, retired, had problems with pain and decided to search to find this diet from France and experienced by a doctor with his patients over long years (Dr Seignalet). He had compiled results from his patients with various diseases. And fibromyalgia was one of them. 85% of these patients with this disease were in remission. I tried it and I can tell you that I was able to stop all my anti-inflammatory drugs and get out of bed. I am not cured. I am better and I am functional. In my case, it is very appreciated. 15 years d I know what it is, why not stay open to this possibility when we see that there are serious studies on the microbiome. We all know that we are from a generation where there have been many changes in the diet with the introduction of pesticides and genetic interventions for at least 30 years. We don't know what it creates on our body. But we can still wonder about the potential effects. I can't give you research, but many know this stuff here. So, as our disease is complex, and there are several factors involved, I believe that we must consider this path as being able to help improve our condition. Not for everyone as always. Have a good day!
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Invisible Woman
Senior Member (Voting Rights)
I am currently writing a thesis on epithelial barrier integrity in health and disease, so I might get a bit carried away
It's obviously something you feel passionate about & there's nothing wrong with that!
It's just as a patient who has been down that road & it was actually the person treating me who eventually pulled the plug after we tried various rounds of medication and treatment. My body simply did not react the way it was expected to. It cost a lot of money and it took a lot of my physical resources to keep getting to appointments and I was moderately ill at the time. My ME is simply too severe today.
I'm not sorry I did it then as I did learn a lot about my own body from it, but if I were to be pushed towards that today then it would be disastrous for me.
Diet is something people can be evangelical about (perhaps because it's something they feel they have some control over) and even though some people knew I had been in the hands of a specialist, they were still pressuring me to try whatever their pet treatment was.
@Gigi300 I'm glad you had an improvement in health. That's always good to hear. However, without detracting from or doubting your experience in any way, a word of caution -
Several family members have a debilitating and long term autoimmune disorder. One of them was persuaded to go on a diet that was supposed to reduce inflammation and there were things they were supposed to start including as well. As part of the treatment they were to come off their prescribed medication. I was still living at home at the time and the result was an absolute disaster. My relative had to be carried to the bathroom, yet was in so much pain just touching them had them in tears of agony. Going straight back on their meds couldn't provide instant relief because they took weeks to kick in.
So, yes, there are success stories out there. As someone who is familiar with the flip side I am simply adding the word of caution that not every treatment works for everybody. Like with any treatment or therapy be aware of what might go wrong and consider if you would be prepared to pay the price. That's not to say don't try at all, just make sure you're fully informed.
[QUOTE = "Invisible Woman, poste: 232607, membre: 10"] Donc, oui, il y a des réussites. En tant que personne qui connaît le revers de la médaille, j'ajoute simplement le mot d'avertissement selon lequel tous les traitements ne sont pas passés pour tout le monde. Comme pour tout traitement ou thérapie, sachez ce qui pourrait mal tourner et demandez-vous si vous seriez prêt à payer le prix. Cela ne veut pas dire que n'essayez pas du tout, assurez-vous simplement que vous êtes bien informé. [/ CITATION]
C'est bien de parler de quelque chose choisi qui nous aide. C'est ce que tout le monde recherche ici. Et nous savons qu'il n'y a pas de recette magique pour ce que nous vivons. Je souffre de la maladie depuis 30 ans. Bien sûr, la prudence est nécessaire, je suis tout à fait d'accord avec vous. Dans mon cas, je n'avais aucun médicament à retirer pour suivre le régime. Et je n'ai pas parlé dans mon message précédent de retirer les médicaments pour opter pour un régime. C'est en m'améliorant que j'ai pu les retirer. Et je suis d'accord avec vous que tous les médicaments prescrits doivent être surveillés et retirés selon les procédures très spécifiques avec le pharmacien ou le médecin. Je vous invite à lire Mme Lagacé, (La fin de la douleur, 2014. Amazon product ASIN 1771640189 qui a des représailles le travail du Dr Seignalet. "Dans mon premier livre, J'ai fait référence à plus de 450 articles scientifiques sur les facteurs qui ont une influence directe sur le développement des maladies inflammatoires chroniques, comme un déséquilibre dans la flore intestinale, les effets nocifs des céréales contenant du gluten, des produits laitiers, des glycotoxines, un excès de sucre et de sel… C'est ce que Seignalet a soulevé. " des glycotoxines, un excès de sucre et de sel… C'est ce que Seignalet a soulevé. " des glycotoxines, un excès de sucre et de sel… C'est ce que Seignalet a soulevé. "https://fr.chatelaine.com/sante/nutrition/le-regime-hypotoxique-entrevue-avec- jacqueline-lagace / Je pense qu'il est important de considérer un ensemble de facteurs pour cette maladie car nous n'avons pas tous ici les mêmes degrés de cette maladie. Cela a plusieurs causes de cette maladie. N'oublions pas plus que nous avons nos propres préjugés personnels lorsque nous remettons en question notre maladie. Et que nos préjugés peuvent parfois nous cacher des vérités que nous ne sommes pas prêts à entender.
C'est bien de parler de quelque chose choisi qui nous aide. C'est ce que tout le monde recherche ici. Et nous savons qu'il n'y a pas de recette magique pour ce que nous vivons. Je souffre de la maladie depuis 30 ans. Bien sûr, la prudence est nécessaire, je suis tout à fait d'accord avec vous. Dans mon cas, je n'avais aucun médicament à retirer pour suivre le régime. Et je n'ai pas parlé dans mon message précédent de retirer les médicaments pour opter pour un régime. C'est en m'améliorant que j'ai pu les retirer. Et je suis d'accord avec vous que tous les médicaments prescrits doivent être surveillés et retirés selon les procédures très spécifiques avec le pharmacien ou le médecin. Je vous invite à lire Mme Lagacé, (La fin de la douleur, 2014. Amazon product ASIN 1771640189 qui a des représailles le travail du Dr Seignalet. "Dans mon premier livre, J'ai fait référence à plus de 450 articles scientifiques sur les facteurs qui ont une influence directe sur le développement des maladies inflammatoires chroniques, comme un déséquilibre dans la flore intestinale, les effets nocifs des céréales contenant du gluten, des produits laitiers, des glycotoxines, un excès de sucre et de sel… C'est ce que Seignalet a soulevé. " des glycotoxines, un excès de sucre et de sel… C'est ce que Seignalet a soulevé. " des glycotoxines, un excès de sucre et de sel… C'est ce que Seignalet a soulevé. "https://fr.chatelaine.com/sante/nutrition/le-regime-hypotoxique-entrevue-avec- jacqueline-lagace / Je pense qu'il est important de considérer un ensemble de facteurs pour cette maladie car nous n'avons pas tous ici les mêmes degrés de cette maladie. Cela a plusieurs causes de cette maladie. N'oublions pas plus que nous avons nos propres préjugés personnels lorsque nous remettons en question notre maladie. Et que nos préjugés peuvent parfois nous cacher des vérités que nous ne sommes pas prêts à entender.
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Invisible Woman
Senior Member (Voting Rights)
I don't believe I said it wasn't.
I'm certainly not saying I'm the only who is allowed to share their experience. As part of those decades of experience I have found it very useful to hear both sides of a discussion. For example in the early days I was part of an informal nationwide group. I found something that really helped me, but it made someone else I knew much worse. Whenever someone asked me about my experience I told them, but I also recommended they speak to the other person, so they were fully informed about the risks. Similarly, if she spoke to someone about her experience she would also suggest they get in touch with me.
When we undergo medical treatment or take pills we should be fully informed of any risks either via the patient information leaflets or consent forms.
As a community many of us have suffered harms either through GET, LP, an alternative therapy that didn't suit and so on. One of our criticisms of the BPS cabal is they way they ignore and under report harms. The ignoring harm caused, lack of reporting of harms and advice to new patients that treatment can cause harm means the harm continues and patients are not equipped to give fully informed consent.
If we are holding the BPS brigade to these standards then we should hold everyone to these standards. The argument of potential efficacy of treatment for some is not good enough, in my view, the potential for harm must also be discussed.
I understand very well that the disease that we have especially when we are severe means (having been bedridden for at least 15 years with pain extrem) everything we try can seriously affect us. I am very aware of this, having tried several things over the years. I agree with you that this must be taken into consideration. When I suggest a hypotoxic diet which the author mentions at least 450 studies on the subject (in the first book The end of the pain) as indicated in my last message, it still notes a considerable intellectual rigor. So once again, I invite you to read it to be better informed and understand that this microbiologist 'at no time, she suggests things that can harm a very sick individual, on the contrary. She is very concerned about the state of the person who must respect himself in his journey. I believe that at this point in the discussion, you should be able to trust people to make their own choices, taking into account the honest and precise information given to them.
I apologize for having moved away from the original subject....
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Invisible Woman
Senior Member (Voting Rights)
Absolutely. I have been honest in stating that I am speaking from my own experience. I am not in any way trying to stop anyone from looking into anything any further. I rather resent the implication that I have.
It's the nature of the forum to discuss and share our experiences not simply accept information put in front of us. No?
shak8
Senior Member (Voting Rights)
The hypotoxic regimen (French) for inflammation, a cure-all, panacea for what ails one. There is a book out, website, meal delivery.
Hmm. Reminds me of Teilelbaum's book: From fatigue to fantastic.
Fallacy: an appeal to authority, as in Trust me, the author, I am a physician (or some other health professional). I have the answer.
Well, no, you don't. Is there research to back it up. Or has the book author conducted scientific research (scientific: control group, adequate number of subject tested for hypothesis testing). No.
My objective rational brain asks: how could a diet reverse such a severe pathology as fibromyalgia, or ME/CFS, or even improve symptoms more than 2%?
(I, too, eat a nutrient dense diet but I am also a gourmand, so I eat also what gives me pleasure, but with an eye to incipient Type II diabetes prevention. Hasn't damped my fibro pain one iota. What has dampened my pain or changed my pain, who knows.
The natural course of an organism adapting to an illness or the natural course of the illness itself?)
One has to corral all the possibilities of thinking here:
Is it likely?
If not, then what makes the patient feel they are doing better?
First, trying something novel with the hope (placebo response) that one will get better.
Two, the serenditipity of getting better (chance) and attributing that to the last change they made (the diet change)=Post hoc...(forgot the latin) meaning: after this therefore because of this. A common fallacy.
Three: a feeling of self-control. A daily feeling that you are in control of your illness. This is self brainwashing in a sense. But it can be effective (along with the placebo of something new, for several months only.)
Hmm. Reminds me of Teilelbaum's book: From fatigue to fantastic.
Fallacy: an appeal to authority, as in Trust me, the author, I am a physician (or some other health professional). I have the answer.
Well, no, you don't. Is there research to back it up. Or has the book author conducted scientific research (scientific: control group, adequate number of subject tested for hypothesis testing). No.
My objective rational brain asks: how could a diet reverse such a severe pathology as fibromyalgia, or ME/CFS, or even improve symptoms more than 2%?
(I, too, eat a nutrient dense diet but I am also a gourmand, so I eat also what gives me pleasure, but with an eye to incipient Type II diabetes prevention. Hasn't damped my fibro pain one iota. What has dampened my pain or changed my pain, who knows.
The natural course of an organism adapting to an illness or the natural course of the illness itself?)
One has to corral all the possibilities of thinking here:
Is it likely?
If not, then what makes the patient feel they are doing better?
First, trying something novel with the hope (placebo response) that one will get better.
Two, the serenditipity of getting better (chance) and attributing that to the last change they made (the diet change)=Post hoc...(forgot the latin) meaning: after this therefore because of this. A common fallacy.
Three: a feeling of self-control. A daily feeling that you are in control of your illness. This is self brainwashing in a sense. But it can be effective (along with the placebo of something new, for several months only.)