Just introducing myself and asking a question. I've been following this site for the last two weeks and can relate to so so many posts.
I was diagnosed with Fibro three years ago but can track the slow progress back to my teens (now 55). I try to control the pain with 10mg of Amitryptyline, 30 mins a day of exercises to stretch the nervous system (learnt at pain management clinic) and 15 mins of light cardiovascular exercise daily, and MOST IMPORTANTLY - a restricted diet.
Through a process of elimination, I found out many years ago that certain foods were leading to internal bowl pain, fatigue, external back pain, migraines and effecting my ability to concentrate - fibro fog. Although very hard to keep up, I personal find by eliminating these foods I sustain a better degree of life. I am still able (with a struggle) to work 4-5 days a week to manage my own business.
My question is: Do all people who have fibromyalgia have food intolerances and which foods? Mine are: Dairy (lactose), wheat, gluten, chocolate, caffeine, alcohol and it looks like sugar!
I would be interested to know if other fibro sufferers have the same intolerances and thus exclude from their diet to obtain a better standard of life, even though it is very hard? Or have alternatives so they do not have to restrict their diet?
Chris
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C-Salt
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I've had food intolerances all my life, long before fibro. But neither before nor after my severe continual flare have I had problems with dairy, wheat (except I can only eat real wholemeal), gluten, chocolate or sugar or any other typical allergy food. Caffeine & alcohol are things that irritate my hyperacidic stomach and IBSD-gut like a whole load of other foods, esp. onion-like, sour/acidifying, spicy and more. I have no alternatives than to restrict extremely strictly. I now also eat a Mediterranean diet (mainly veg & unsaturated fats in nuts & oils) due to high blood fats. But nothing makes a difference to my fibro, just that I then have almost no stomach & gut pain, unless I haven't identified or respected an old or new trigger yet. And that of course means less pain interaction, better sleep etc...
But I'd like to know how many fibromites *don't have food intolerances, IBS etc. I've learnt from books etc. that it's about 30-40% that do, or does anyone know different?
Thanks for your reply. I thought it would have been higher than 40%. If you body is hyper sensitive enough to create the external pain, then it followed that the internal pains would be part of that process. They are certainly triggers for me and hasten my ability to recover from severe flare ups. Like all fibromites, i'm just looking for a higher quality of life without the huge effort. I'll keep looking.
Hmm, whilst I agree that pains inside can parallel pains outside, but of course by far not everyone has every kind of pain... Also my experience doesn't support the theory that nerve oversensitivity is a main cause of fibro, in case you are referring to that - a theory which is losing supporters in newer studies it seems to me.
just to add that "nerve oversensitivity" does not necessarily equate with central sensitisation syndrome (CSS) i.e. the brain over reacting is not the same as the nerves being oversensitive. Or do you mean SFN?
Also C-Salt , as has been mentioned we could have had intolerances even if we did not have fibro and generally from an observational point of view society has more intolerances than it perhaps had in the past. Diet does have a couple of studies where it may play a part in fibro but it is certainly not a direct relationship.
Personal bias or viewing through our own prism of our own condition is something that we all need to be wary of.
Not all do and I am one. Suspect you are asking do more people with fibro have intolerances than a non fibro cohort. AND is that significant in any way.
Yes I suppose that is a better way of putting it. If anyone can direct me to a report along those lines I would be grateful. I feel certain within my personal experience, the sensitivity that now courses my sharp muscle pains, continuous aching, and skin hyper sensitivity started with sensitivity to food.
I’m one of the lucky ones who doesn’t suffer with IBS. I do find some foods make my fatigue worse, though. Wheat products and alcohol are my biggest enemies. But I do have RA as well as fibro - and those things are known to worsen RA inflammation.
Hi C-Salt , I’ve never had any sort of food intolerances or allergies, or diagnosed with IBS.
I mainly eat a Mediterranean type diet, with lots of fruit & veg, fish, meat, etc, and cook from scratch mostly. I try to avoid artificial sweeteners and too much coffee, and only occasionally have alcohol. I vary my diet, and the only thing I avoid is spicy food as I have a stomach condition (not related to Fibro ).
One of the things that shocked me was the amount of additives added to medications to colour it, and to preserve it for a long shelf life. I need my Fibro meds to let me have any kind of normal life, and my other meds can’t be avoided as they keep me from having a major incident.
I often wonder if people who have food intolerances, and allergies, would have them anyway, whether they have Fibro or not. I found out that both my adult children have lots of food intolerances and allergies. One is Vegan and other follows FODMAP which is quite restrictive. Neither have Fibromyalgia.
It just proves what we all know on this forum, that we’re all different, and what suits one, doesn’t suit the other. Also that’s why Fibromyalgia is so poorly understood as one size doesn’t fit all in the treatments and medication that we try.
C-Salt, your food intolerances and fibromyalgia may find relief from a form of thiamine called TTFD such as Lipothiamine normally not found in B complex supplements that is effective in passing through the blood/brain barrier. Thiamine has a important role throughout your body and especially where the vagus nerve goes starting in your brain stem. Magnesium is needed to make thiamine bioactive. Always consult your health care professional before using any supplement.
They are in so many foods that peope dont realise. Foggy head ibs hives swelling itching to name a few. Antihistamines twice a day. And a low sulphite diet has made a tremendous difference to me
I find i react to much the same things you have listed . I now no longer eat any wheat products. I have a small amount of lacto free milk. I avoid caffeine completely. Reluctantly, I have had to cut back on alcohol, particularly wine - I feel ill just after a small amount. I also avoid sugar. There are some days when I try to figure out what I might have eaten to trigger symptoms because I’m sure there are other things. Luckily there is still plenty to eat as I don’t want to get into the situation of a too restricted diet.
Alcohol contains sulphites. Most t bags are bleached with sulphites. Sugar cane does beet doesnt. Most flours have been bleached with them. Citric acid as a preservative contains it. (Fresh is fine) most soft drinks friut juices and preserves.. contain it. Like i said in my comment its in so many things. The more something has had done to it the higher the chance. Even in semi / skimmed milk. Many put their issues down to lactose or gluten. When its more widespread.
Very interesting Bruton. I will look into that in more detail. Thanks!
Hi C-Salt, thank you for bringing this issue up. I think I react to what you have mentioned too. Especially sugars. I itch terribly around Christmas after eating chocolate, cake, biscuits and ice cream. The others I can tolerate if it is one meal in three months. My IBS is horrendous. I've had a such bad flare since autumn, mostly bloating and wind, that I had to switch from a keto diet to eating berries, a few types of veg often eaten raw, and nuts. Unfortunate, I am in a phase where I put on weight but do not lose it since 2018 that I could not introduce other carbs. But though IBS is not totally gone, it is manageable. Fresh ginger helps. Artificial sweetener is unforgiving.
Hi K1zt0sempa. Christmas is definitely the worst time. My skin becomes so sensitive I cannot be touched. Many fibro symptoms are triggered. Replacing sugar with more fruit seems to be the way forward. If you can overcome the temptation of Christmas goodies that is.
desquinnPartnerVolunteerFMAUK Trustee in reply to C-Salt
this illustrates one of the issues with this sort of analysis. Christmas can be a time of great stress, change in behaviour, and more expectations so the environment rather than food could be playing a part.
Hi C-Salt. Long before I was diagnosed with fibro, I was treated for multiple food allergies and intolerances. The specialist I saw said I was a ‘universal reactor’. Have to say the treatment was an abject failure.
But at that point I discovered - by trial and error - what foods I could tolerate. Basically, just a very basic diet of meat, fish, eggs, vegetables and some fruits, decaff tea, soya milk and - oddly - oats. (All organic if possible). So that is basically how I still eat.
Now, with the benefit of hindsight, I do think it was always fibro driving the bus!
If I deviate from my usual diet - eg eating a meal at a friends house - I do pay the price. All my fibro symptoms go into overdrive. I never have alcohol though - that would result in a fibro crash.
Of course it’s really boring eating such a restrictive diet - but I accept it as a trade off to keeping fairly active and having a happy life (most of the time!)
I have a severe dairy and fructose intolerance. As I'm so restricted, I take Vit C tabs every day. I limit my wheat intake, but find I can tolerate small amounts. I've used unsweetened soya milk for years.
Just recently, I had an angry, allergic type rash appear on my chest. Yesterday, it went into overdrive, but I think I've narrowed it down to a mix of sesame/sunflower/pumpkin seeds, which I'd begun putting on my cereal. Obviously, 'natural' doesn't necessarily mean safe!
I switched from vegetarianism to vegan a couple of years ago, which has helped a lot.
I'm also allergic to some commercial hair dyes, shampoos and perfumes.
I was diagnosed with Fibro 2006, and some of these problems have developed over time. I don't know if there's a connection to Fibro, but several people I know, also with Fibro, have similar problems. It's a nightmare trying to sift through all possible causes.
"mix of sesame/sunflower/pumpkin seeds":Sunflower has too much omega6, but seeds sh'd be OK in normal amounts, altho I've completely replaced the oil with canola and sometimes olive oil.
But sesame causes allergies, be it rarely: rashes and itchiness, so that'd be my bet... That's why it often has to get a special mention (here anyway)...
Hi. Don’t think I could manage without Alpro Unsweetened Organic Soya Milk! Where I live it’s not stocked in the local supermarket - so I get my daughter and a few friends to buy it where they live and drop it off. I literally have a huge stockpile of the stuff.
Hi,I have lots of food intolerances dairy wheat gluten yeast oats mustard seeds cashews nuts my throat gets really itchy if something is not mentioned in a recipe soya sunflower seeds and lots more I was diagnosed with chronic urticaria 30 years ago it’s due to an autoimmune disorder I have IBD I need to be careful what I eat so plain and boring I was diagnosed with fibromyalgia 5 years ago the intolerance were there years ago my daughter has fibromyalgia she has intolerance to fruit and some vegetables but hers are from when she was about 5 years old the fibromyalgia was diagnosed last year there isn’t enough research in to fibromyalgia you get diagnosed and just left to it 😣
Not that I know of. I could email them to you, but the illustrations are not very accurate (difficult to put a movement into a drawing) and so you are taught how the movement should be conducted : at what speed, the movement, how many for how long etc. The benefit is in the quality of the movement. After 6 months my day to day pain is now bearable - somedays pain free until the evening. Every morning I get up very stiff and in a great deal of pain and the exercises gradually take it away. It will not overcome a severe flare up in a particular muscle, but it reduces the recovery period from 6 months to two. Well it has for me. I was very sceptical at first but i'm glad I stayed with it. If you are seriously interested I would ask your GP to refer you to a Pain Management clinic to learn the right way at the right speed, so you don't risk a big flare up (which had happened to me at three previous attempts of exercise). Most are now doing remote learning via Zoom, so you can do it in the comfort of your own home. Hope this helps.Chris
Hi Chris and thanks for trying,in the rheum./fibro clinics (where I was) and pain clinics here in Germany we do learn a lot of different physio stuff, however none helped me. I'm sure that what you've learnt won't be taught in all pain clinics, even in the UK, it will depend on the PTs there.
Praps we can try to get nearer to this.
Are the stretches anything like the one I do? Dunno if you've read it, altho I plug it a lot: Every now and then during the night and day, esp. before getting up from anything, I twist-stretch my limbs outwards and my back backwards.
Most stretches I've tried before, like yin yoga or just stretches from a stretching book tear me apart, so I can imagine what you mean by flaring.
These are webpages talking about stretching and the nervous system, does anything here ring a bell?:
jasmincarrington.com/post/s... Stretching helps us go back to activating the parasympathetic nervous system, for the rest & digest mode after exercise (instead of the sympathetic nervous system: fight or flight mode).
draimie.com/healing-the-ner... talks about attachment disorder, the vagus system, polyvagal theory, refers to Peter Levine (read/got a book of his, I could look there if I can find anything), scroll down to: "Gentle Start, Stretching", two thirds down. They start with 30 seconds, which is usually too much for me already. They suggest 30 days of yoga with Adriene on youtube, (youtu.be/TXU591OYOHA?list=P... talk about advanced trauma yoga. Anything ring a bell here? What I like about what yoga with Adriene says is: You are in charge. What I don't like is that her very first posture, sukhasana, w'd usually hurt me like hell. And she does it for much longer than 30 seconds, even in her yoga for complete beginners video.... That said, I went on later with a DVD on easy back yoga stuff *without long stretches, like cat-cow, and they work for me, and from then on I developed above twist-stretch...
Obviously might not work for everyone and I’m not sure the science is quite there yet, but I’ve personally found quite significant pain reduction since learning from my physiotherapist about fascia release.
Thanks for reminding me to check up what exactly this is! Would you say these are 'for the nervous system' as Chris's mentioned tho? In your first link I find interesting that it is written by Ginevra Lipton, a doc who has fibromyalgia herself and has written a book. But she separates the fascia-part of fibromyalgia from the nervous system part in the link.
I do feel some of my past pains have been 'fascial'. But I'd tried these exercises using small balls and others I've now looked up using a foam roller, and they harmed rather than helped me. Also my ex-osteopath and my acupressurist have regularly targeted my fascia more gently, and helped get the pain down. I've just found an article which talks about this yogainternational.com/artic.... And the yoga teacher, Jenni Rawlings, goes into quite some depth here and again seems to separate nervous-system-changes to more long-term fascia-changes "Any instantaneous changes in tissue quality that you experience as the result of a massage are not the “breaking down” of adhesions, knots, or scar tissue—they are instead changes in tissue tone that are mediated by the nervous system." What I especially like about her article is also my experience: foam rollers and many physios are not gentle enough for my fibro.
Actually my short regular twist-stretching (and the acupressure helped get the fascia down) is exactly the right thing for my limbs and torso/trunk now, so I can usually get my pains down very quickly. Looking for fascia-exercises for the torso I see that they look very much like my back yoga, from which I've developed my twist-stretching. So it seems these are fascia-exercises already - do you agree? But I like the overview of the "25 best stretches for flexible fascia"-pic I've found. Looking at them in detail, I do "all of them" as soon as I feel a pain somewhere coming on. But I'm doing 20/21 and 25 regularly for my legs, because there's something chronic there. Main difference to what people try to show me is I do them regularly, but only short, 15-20 seconds, so they don't rip me up.
Not nervous system as such...connective tissue. So an adjunct to your conversation - as it’s often overlooked 🙂 Haven’t looked at all your yoga exercises but no doubt there is some overlap. I find using a tennis ball for the fascia release is gentler than the foam roller and more targeted. But the massage by professionals is great as and when you can get it! Thanks for the flexible fascia exercises...looks good and pretty manageable ✅
Amazing, that is my list as well; lactose, wheat, gluten, chocolate, caffeine, alcohol, concentrated sweets. I also avoid high oxalate foods too as best I can.
I have flares which seem to be increasing each year, but haven’t been referred to a Fibromyalgia Clinic yet. Physical Therapist exercises have made matters worse in the more recent past.
I find our common denominators interesting. Wish I could offer you some help, I too I’m in need of ideas though.
Hi C-Salt I can only speak for myself. Many years ago I paid for a private consultation regarding food allergies. Unfortunately most of the 'allergy triggers' involved items of food that I love!! I have, over the years, been diagnosed with IBS, and I have to say that I hate the diet culture so what I do is limit my intake of certain things. I find bread/pasta/rice bloat me causing discomfort so I keep them to a minimum. I know that if I only ate things that were classed as good for me then I might as well give in to my diagnoses !!
Fortunately I've found new foods I love or got used to them. Hardest for me was to realize I can't tolerate fizzy drinks. Eating less fresh fruit seemed hard in the Mediterranean diet, but I'm just realizing I cd eat more again! I also reduced carbs too much, my lipidologist said I have to keep it balanced, so your way of minimizing seems good.
I have had stomach issues since 2006, which improved greatly when I went gluten free 4 years ago.Unfortunately they are back with full force recently, even though I have not consumed gluten.
I suspect some of the foods you have mentioned are also triggers for me now.
I actually booked a telephone consultation today, for next Tuesday, to discuss this with my gp
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Would you say these are 'for the nervous system' as Chris's mentioned tho? In your first link I find interesting that it is written by Ginevra Lipton, a doc who has fibromyalgia herself and has written a book. But she separates the fascia-part of fibromyalgia from the nervous system part in the link.
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