Hello, just wondering if anyone tried to stop any wheat food,(sorry for the poor English, I'm French). As everyone here I am trying to find a way to ease the daily pain and the massive brain fog. I heard that wheat can cause pain and brain fog in certain people.
Talking about brain fog: seriously, if I didn't have this chronic pain I would be wondering about having dementia.
Thanks everyone.
the absolute best thing I have ever done wrt pain is to give up diet coke and everything else with artificial sweeteners in. Pain disappeared within days 👌🙏
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Do you know if you are glutan intolerant? Bc I don't think it would help if you weren't. I had to give up gluten for something else, tried it for 3 months didn't make any difference. Although I was told later 3 months isn't long enough, not sure how long is necessary.
Part of the problem is the difficulty/expense of actually testing for gluten intolerance (which is not the same as coeliac testing - and that often misses people who are coeliac anyway). I had no idea that I had a problem with gluten until I cut it out and got an impressive improvement (although not in fibro pain). But I also found that I was reacting to things like corn and potato starch, so traditional bought GF food was hopeless. Once I cut all that too, and dairy, and then did an autoimmune anti-inflammatory type elimination diet, things improved some more. An elimination should last as long as you need to feel some benefit before you start to reintroduce things a tiny bit at a time, so for some it is quick, for others many months. I have had fibro since childhood so it has taken more than just GF to try to help that. Magnesium was a game changer for me, as well as B vitamins, and I am still happily grain free/dairy free. Cheers
Yes I've had fibro since childhood too and I had lots of IBS symtoms but back then IBS wasn't really heard of so that took many years to identify.
I have chronic migraines so magnesium and B vits were tried too but again they didn't help sadly.
I think as long as you're consistant and its not too stressful then there's no harm trying these things. In my case I tried all these things, they didn't help and I did find it immensely stressful. Stress was worse for me than diet but of course what works or doesn't work for one might be life changing for others.
I agree, the whole process of feeling so unwell is hugely stressful, and stress is a big cause (was for me anyway - but in its widest sense, including food intolerances). Oestrogen plays a part too, which is probably why the magnesium helped me so much, as well as with the neurotransmitters. But I also do plenty of calming things like tapping (EFT) and breathing, meditation, vagus nerve and lymph exercises, and I cut out every chemical that I could. Each little bit shifted the overall picture, but there are limits to what we can do for ourselves. I slowed progression, but didn't get rid of the conditions. If only! But I did feel better for having some knowledge and tools at my fingertips. Best wishes for finding things that help you.
thanks 👍
I tried a "living with pain"course at my local buddhist centre and was a practising buddhist for a few years (until I had children and then everything went out the window).
I absolutely detested meditation/ mindfullness etc pain levels went through the roof during it. But I was part of a discussion group which helped hugely with notions around acceptance and the fear of pain.
I function by using exercise, every day, as intense as possible. Anything that can wear out all my wound up stiff muscles. Its the closest I get to relaxing!
But if anyone ever found a cure to insomnia thats probably my greatest need and my greatest fear/stress. Maybe one day aye?
I hope so! I'm lucky, generally now I only have insomnia when mast cells are going haywire and histamine etc are high.
I was made to try some CBT and mindfullness and couldn't handle that at all - made me far worse, as did breathing exercises the first time I tried them, but a year or two later, doing some for myself, I found I was ok and it helped. So I guess we are all different and what we find useful may change over time.
Best wishes to you x
it's stressful thinking that I'll have to give up "pain au chocolat"!
You may find that you are fine with some forms of grains and can buy or make your own - I do manage to enjoy some very dark chocolate after meals!
Absolutely! Carbs are about the only thing that doesn't set off my IBS 😁
don't know. I suppose I've to try.
I find being gluton free really helps with the pain. But I know it doesn't work for everyone.
I guess we just have to keep trying things out to see what helps.
yes, we're our own guinea pig
I have found great relief with my IBS symptoms from following a low fodmap diet. This helped my eliminate foods that caused my problems with my digestive system. I still get problems occasionally but looking at what i have eaten i can generally pinpoint what has caused the flare up.
thanks 👍
Hi. All gluten containing grains, not just wheat gluten, could contribute to pain, brain fog, other neurological symptoms and skin disorders. My neurologist said it was likely that gluten(s) had played a part in my current health problems (although he said not all neuros would agree about that). So it is worth a try, but I would ask for a coeliac test first, just in case you actually get a positive test and can get some official diagnosis and assistance. As the tests commonly miss people you could still be coeliac with a negative test, or you could have some other gluten related disorder. It is not a good idea to go back on to gluten-containing products for testing once you are off them, if you have found being off them beneficial, so better to test, then try stopping eating them. Good luck
thanks, I'll try this
Trouble is, if you are not eating gluten, then your blood test results will be negative.
Cheers, Midori
Bonjour ,Bienvenue,😃, you will often read here that members will try medications quite often trial and error as we say, something that will dull the pain in order too cope on a daily basis, i personally take Duloxtene, Codiene (but not for every day use) I never miss a soak in the bath as it really does help with a cup of Epsom salts. Differently pacing during the day is key, as I write i am resting in between jobs at home today as I am very tied achy from the day before and fibro (also I have CFS)has a way of slowing you up. I do use bio freeze gel to rub in the places I ache the most(always ask your pharmacist if on any medication 1st) As for the brain fog 😫🙁I can be in a sentence and .it’s rally forget what should come out of my mouth next , my close family and friends are used too this, I do have sticky notes around the house as sometimes it’s helpful to finish or do something. I try and play scrabble ,word games too keep my mind active, I lean more toward that not the mathematics side as always enjoyed English more at school. I hope you find the forum helpful I have been here for the last few years chatting too a very big club we did not ask too join🤣
very helpful. Merci beaucoup 👍
Sorry about the poor English but English is my first language. Anyway, I have found diet to be pretty important with easing the problems created by fibromyalgia, especially the explosive ones. Also, wild parties are out because people tend to pour acid (alcohol) down your neck and do not realise that you will be in the land of the living dead for a few weeks after. That also answers the question about the brain fog, it's like having a bottle of whisky onboard. I did have a cognitive function test done and apparently, I am normal. Though I did realise they were making adjustments for the fact that I am part zombie vampire.
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I'm wheat /gluten intolerant so cut it out, but it only helps with ibs symptoms not my fibromyalgia symptoms
You could keep a food /symptom diary for a month to see if specific food types trigger symptoms, then try removing these foods for 4-6 weeks before reintroducing
If you are not intolerant to the food type, it is unlikely to make any difference to your symptoms
thanks 👍
thank you everyone. Your answers has been very helpful and beneficial. I will try your advices. Nice funny comments as well.
Am wheat and gluten free dairy free, will say watch any premade foods, just because on free from stand does not mean it is free from, what trying to be freed from, cooking or steam cooking, baking yourself saves a lot of set backs.
baking is cheaper to do yourself, then buy the same size in a shop.
thank you for your input.
Hi Poussierre. All the above is very interesting. We are all different - what works for me might not help you.
But -in my case - I am absolutely convinced it is the sulfites/sulfates added to food that are the culprits. They are a chemical preservative only there to extend shelf life and prevent spoiling.
The problem is that they are so difficult to eliminate from your diet. Ok - no wine, shellfish, packaged food, chocolate (yes that one is very hard). But sulfites also lurk in breaded fish, commercial coleslaw, prepared potato products. So fish and chips are a problem.
It’s very difficult to have a social life. Sometimes I just eat the stuff and suffer the consequences. But it does prove my theory - I do actually get ‘sulfite poisoning’ - from ingesting the chemical.
Best wishes to everybody doing their best to solve their nasty health issues from Dianne xxx
interesting trial and error!
Hi Poussierre, Welcome to the community!
Your English is better than my French, Haven't used it since '75. 
I'm not sure if mine is Fibro , or whether I'm just losing my marbles, but sometimes when I'm in the middle of a sentence, the word need just falls out of my mind.
I find that wheat, oats, barley, rye all upset me, so I avoid foods with them. Some folk find Dairy is the problem. It's really a case of experimenting.
Cheers, Midori
I don't know where to start, or maybe what to stop!
Probably best to consult your doctor first, Blood tests don't always catch everything, but better to have them done before you start dietary exclusions.
Cheers, Midori
i found many years ago, before i knew i had fibro that yeast and yeast based food gave me a lot of pain. By yeast based i means things like yeasted bread or wine, or brewers yeast. I'm ok with sourdough, cheese, yoghurt etc. This was about 40 years ago when my children were little. Because the pain seemed fairly random and seemed to move around I didnt think i could go to a doctor I later found that my fatigue was much better if i cut out wheat as well. Wheat leads to muscle weakness and fuzzy headedness. This was still before I'd even heard of fibro. I do eat wheat occasionally and it affects me for about 4 days. I''m not gluten intolerant, spelt flour is fine
When i first investigated Fibromylgia i wasnt sure if it could be because of the lack of pain. Then instead of making my own sourdough bread I discovered a local baker who made spelt bread and I started buying that and gluten free products from the supermarket and, guess what I started getting the pain again! I bought a book about fibro and almost cried with relief when I heard my type of pain described! Now i do have a diagnosis of fibro and I steer clear of yeast and wheat again.
i also find too many carbs cause pain. Reminded of this right now as I had a bit of a binge today and I'm just feeling the effects!
I suppose I have to motivate myself!
i was diagnosed with fibro 2 years ago and have found a high protein low carb diet really helps,i wentvto a trial at my local hospital who were using diet and exercise to control the symptoms and it has changed my life, i can control a lot of the symptoms by lifting weights ,and being very careful about what i eat,the first few weeks were difficult because of the pain but after that it got easier,the effects have been really dramatic,hope this helps
yes, thanks,it does help!
how did you found out about this trial, seems interesting.
i was told about it at manchester royal infirmary, it was stopped when covid started ,not sure if its restarted yet but was really interesting. I know its not for everyone but worked for me,i dont like taking loads of pain meds and was looking for an alternative,
thank you
I have been gluten free for 4 years and dairy free for 2 years. No change to pain levels or brain fog. Sorry
lol. I like your answer.👍
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