How many of you with fibromyalgia have changed your diet and now are able to eat nearly nothing now without digestive consequences?

[Tjoceans]

Everything is so different for me now. There isn't much I can eat anymore, not that I ever could, but I've had about 3 good years of being able to indulge. When I was a kid I spent most of my time being so hungry. I feel like I have to go back to that. I wonder how many of us with FM might be having the same experience related to food.

[Hazel_Angelstar Administrator FMA UK Staff]

I have a few food groups that trigger my ibs (gluten, dairy, tomatoes) but other than that I eat what I like.

[desquinn Partner Volunteer FMAUK Trustee in reply to Hazel_Angelstar]

whereas I am very fortunate that this does not impact me. I think the same as anyone else that has a curry or spicy meal from somewhere new then there may be "consequences" but I put these down to luck or bad choices and not fibro

Glad that I can still eat all my "bad" things

[WF2k in reply to Hazel_Angelstar]

I started to have a problem with bread about 5 years ago, it started making me vomit, I had very bad pain etc so now I avoid it, not sure why bread in particular was doing it? Also did have a bit of a fajita wrap that did the same thing, so I don't eat them either now, I'm the same with dairy.

[JayCeon]

Hi Tjoceans - not sure if it counts, but maaany food intolerances & stomach hyperacidity made me look for triggers more and more via elimination diet over the decades. Wasn't finished with that, but fibro made me decided to complete it as perfectly as possible, firstly just to get everything down which I can control, as there's enough (esp. the Ache) which I can't. And secondly to make sure I can detect if something is being triggered by any med or supp I'm taking. I also additionally tried "all" diets (I can subsume about 20) under those I tried, e.g. vegan, gluten-free and now due to high lipids I need to keep to a Mediterranean diet (and fairly vegan and gluten-reduced). But I love my diet, I love the veg (often raw), nuts etc. I still am able to eat and have discovered new tasty food. I can eat as much as I want of this, so never need to go hungry... The things that were limited by the amount turned out to be more harmful than I realized, so I just stopped them altogether and eat more of the rest.

[neilwaud1969]

Hi Tjoceans, I feel your angst and pains!!! Whilst I am only a young 52yr old guy in England, I’ve been batting with Fibromyalgia for some 35+ years, I still cannot predict my relationship with foodstuffs! I would run bland-flushing-diet for between 4&12 weeks at a time, then do slow~transition one~4~one completing in 2~4 weeks. This would go on often for 6~m to 2~y.

There were a few CONSTANTS;

a) Living at virtually same geo~location,

b) Drink would stay constant for 1~2 years (tap water / bottled water / one-of-4 dilute-squash / coffee / tea).

During my late teens (17,18,19) consumed copious quantities of alcohol ~< for almost 12-15 years >~ oh and my medication only varied every 5 or 6 years.

Well, after all that, I came to an Absolutely Awesome Conclusion!

Can you guess!

Well ~ — I ~ — Have ~ — Red ~ — Blood…

——< and lastly >——

I live on Planet Earth…..

Sorry if this sounds like I am taking the Micky out of you, I’m definitely not doing that, it’s just that writing all this makes me laugh and smile a little, as I live on my own!!

It’s either that, or I start arguing with myself, now you don’t, oh yes I do, what would you know, I know a lot more than you ~~~~~~~~

Sorry I digressed.

Hope everyone reading this has a safe, happy, beautiful, relaxing, and relatively good control of your fibromyalgia.

Merry Christmas and a Better 2022 for Mankind.

Neil in Cambridgeshire ~ UK..

[moo196]

The very best thing I have ever done wrt pain is to give up diet coke and anything else with artificial sweeteners in 🙏

[Macaulay1]

I have found if I keep my in take of easy access carbohydrates like bread rice pasta potatoes etc down my symptoms are better. Equally processed foods cause me problems, so I am never hungry but I have to be picky about eating fresh stuff which when you feel so tired is difficukt but fast easy food is just not worth it.

[WF2k]

I can't eat a lot anyways due to my IBS, reflux, sore jaw, burning mouth syndrome, swallowing problems, then I have problems with the glands just above my neck, plus food intolerances, I asked my GP if I could go on a liquid diet once, don't think she liked the idea of it lol, but because of not being able to eat properly, it's also impacted my weight (overweight). I'm seeing a SALT next month about these issues because it's also added to my mental health conditions.

[Tjoceans in reply to WF2k]

Yes!! This is my life! I don't have mouth burning, but I have the IBS and mental health, but I'd say a lot of my mental health has to do with the changes I'm going through with the FM. Gland problems. Also, I was allergic to so much a few years ago. I really didn't understand it. I tried eliminating so many foods. Turns out, I'm allergic to soy. The very oil I was using to cook all my foods. Completely random and feels ridiculous, but I was going to the doctor and they blamed it on my anxiety disorder and possible drug seeking. No help from the doctors most of the time.

[WF2k in reply to Tjoceans]

Some GPs are fond of doing that, I didn't have that issue, but I had a dentist who wouldn't listen and the GPs just kept referring me to gastro (twice), it was a physio that I saw recently who did an assessment for aids and adaptions etc that referred me to SALT, my friend who is at uni doing her course to be a SALT has said for a couple of years or so that she thought that I needed to see a SALT. Oh yeah, I know what you mean in regards to allergies, bread now makes me very sick, there are different meds that I'm allergic to, I also have a nasal spray for allergies as well. I seem to have a lot of allergies noted in my medical records and not all new, I feel like I was born with dodgy genetics as well lol. I'll try and post an update when I sat the SALT.

[JayCeon in reply to WF2k]

WF2k - sorry, I don't get SALT yet (not familiar with it, don't live in the UK), I can only find "Speech and Language Therapist/Therapy/Team" and can only see the connection of mouth & throat movement, is that it?? (But their organisation rcslt calls them SLT... hmmm...) Or "Situation Awareness Logistics Tool"! - now that might be fibro-food-related ;-). Thanks... - I don't know if I should put it in the Fibro Glossary....

[WF2k in reply to JayCeon]

No need to apologise SALT is what you've said there, speech and language therapy/therapist

[JayCeon in reply to WF2k]

Thx - so SALT might help with the swallowing problems... hmm... praps comparable to my singing lessons, that however didn't help with certain strange throat problems. But who knows - I'll be patient till you keep us updated... 😀

[WF2k in reply to JayCeon]

I have my first appointment on Jan 7th, I'll try and remember to update

[AlteredWorld]

Hiya,

I'll join in by adding lactose intolerance and wheat/yeast/soy intolerance and I can only drink three drinks now - water, decaf espresso and.... G&T's - yay!

Tomatoes and lactose cause pain and inflammation in all my joints and limbs.

Wheat/yeast/gluten [& real ale] inflame my gut.

Anything from the onion/garlic family has to be avoided

Sugar... too much sends my brain insane and I've only found one sugar alternative that doesn't cause me so much bother... Natvia, and it's not cheap!

Beans, lentils, barley etc are a complete no-go.

Put it this way - Fodmap is not restrictive enough - and it looks like those replying before me have the same issues.

Eating and drinking the wrong foodstuffs can cause us havoc - as a habitual comfort eater - I don't do myself any favours, but I have taken up eating lots of green leafy vegetables with lots of flavours such as indian or chinese but substituting the bits that hurt... chilli and soy for example. I can cope with flavoured oils e.g. garlic and chilli infused, as substitutes.

It's a bit hit and miss for me aggravated by IBS and diabetes, but we seem to be in good company, it's daunting at first, but as others have written, sometimes it's not worth eating what we used to be able to, and at other times we can enjoy a little bit.

All the tips being given will help you find a way, and hopefully you are not as distructive as me with comfort eating when I have those 'give-up' days.

Top tip - if it works for you - Coconut flour is a good substitute for baking!

[Woodhouse16 in reply to AlteredWorld]

What you have wrote sounds the exact of me... but I the same as you have learned about gluten wheat dairy processed foods sugars ect and how they inflame my body and intensify pain ect... I've changed my diet to plant based for just over a year now with much improved results although have to say it isn't easy working different things out sometimes but trial and error perseverance ect has paid off.. still have to make different tweaks here and there and not pain free plus had to work all this out for myself and my diet was pretty bad beforehand but proud of myself for making a difference. I eat at least 5 different types of veg a day including spinach and kale which I swear by for giving me abit more energy ect and I make fresh fruit smoothies to drink daily too! Has definitely changed things for me still pace myself still have some bad days but not as consistent although never entirely without pain it's alot more manageable. Had to try various things for myself as amongst many other things fibro has changed for me it's made me more sensitive to strong pain meds so I'm limited as to what I can tolerate plus my pain management clinic appts because of this were canceled due to covid pandemic with my first ever one being 31st March 2020 so set about looking into more natural ways I could control my symptoms. Not cheap my food bill has doubled but worth every extra penny!.

[AlteredWorld in reply to Woodhouse16]

I agree on a higher vegetable intake - especially leafy greens. I avoid foods in the 'plant-based' section tho cos they are just as processed and, worst of all shop-bought plant based food and vegan style cheeses etc are full of palm oil - and that is something else I found my body says 'no' to quite violently ha! My body likes eggs and lactose free so that has saved me from some restrictions, I can do nuts but not seeds - but that's down to my ruptured hernia being unhelpful! Good to hear I'm twinning with someone on this

😍👍

[Woodhouse16 in reply to AlteredWorld]

Oh you have a hernia too do you lol mine needs repair but that's another thing on hold for goodness knows how long just keep pushing it back in lol. I'm dairy intolerant too so cheese and cows ect milk I have to avoid and drink coconut milk. I do find it a battle sometimes though as somethings can be OK with at times then not but do make sure my plate daily consists of mostly vegetables plus do things with tofu ect go to my local health shop for various items of food ect too I keep my vitamin d levels up too as I was quite deficient in that but think in our country that's known because of our lack of sunshine I also have to keep my calcium in check which until I found out I was dairy intolerant was easy but abit more difficult now especially as I have osteopenia which osteoporosis runs in my family my mother and grandmother were crippled with it. I also have osteoarthritis and degeneration in my upper spine thoracic spine neck but do try to walk most days which is normal for me as I don't drive and live alone. But if you don't use it you lose it so although I'm unsteady and it's painful I still do it..

[AlteredWorld in reply to Woodhouse16]

Ha! My hernia strangulated a couple of years back, I wasn't going to go to A&E, I held off for six hours trying to work out if it was a genuine ailment, like appendicitis or fibro/fnd weirdness. But once I started talking as if on helium - hubby came home and took me there straight away.

Peritonitis apparently, didn't know it at the time...but it filled my pelvis with pus - attractive much! - I'm in no rush for the tidy-up operation to make me less curvy; but I do strongly recommend people don't just ignore symptoms, get things checked out ha!

[JayCeon]

On a slightly different note, I do get a great variety of resulting symptoms from food, but praps the weirdest is my total esophagus block once in a while, meaning strong pain & not being able to eat or drink until it's either thru or out. Certain foods are prone, praps them being fridge cold. Nothing diagnosed. Finger vibrating above & below my breastbone can help. My hunch is it's a cramp. Sometimes when eating under a bit of stress, but still well chewed. Pre-FM, but increased with it.

[Whiteclouds]

I change my diet as I notice certain foods give me issues and don’t have them in my diet for several years before I try them again. I cannot drink normal milk as loctose intolerant I’ve cut out carbs and now stick to mainly salads until that upsets me then change again i cannot eat nuts or seeds as I have diverticulitis so need to be careful what I eat all of the time

[Acocoa]

I have stopped coffee/caffeine, alcohol and fizzy drinks cause flared and aches. Since March 2021 I have seen a difference. I will say some food do cause flared ups.

I will eat all food as it makes me feel happy and I can have some control over my life, as fibromyalgia has stole my life

😆

[Woodhouse16 in reply to Acocoa]

I have stopped those too and noticed the difference although fizzy drinks I didn't have much of only mixed in with alcohol. Have never been that much of a drinker anyway but have noticed since not having them at all it's made a difference as with the caffeine too..

[Jockabenny]

Hya Tjoceans I’ve had fibromyalgia ME and I BS for most of my adult life I’m 62 and for the past ten years have suffered with wind trapped smelly bloated wind and no matter what I did couldn’t loose weight so early this year I paid £200 for a dietitian and nutritionist to help with my problems as my pain and fatigue were unbearable I had read about Keto but thought I couldn’t do that I wouldn’t be able to eat anything so guess what the lady put me n hubby on Keto, it took some headaches to get it all to sink in but eventually it did and we stuck to it for six months I dropped 19 pounds I felt amazing and could still drink one type of gin with no carbs no sugar or sweetener I’d had the best summer health wise in lockdown I could remember but slowly other health problems kicked in and I’m eating sweet things again my weight is coming back and so is my pain n fatigue CARBS were my enemy I drifted from gin to wine( nightmare carbs) but the day after Boxing Day wer back on the Keto

I read a book called KETO DIET BY DOCTOR JOSH AXE it was £5.00 from THE WORKS BOOKSHOP I was amazed the health benefits it gives you and I learned good fat isn’t the enemy carbs were the thing that gave me wind especially sugar when I’m on Keto I never ever have wind so what does that tell me xx

[Tjoceans]

So glad so many of you responded, I have considered the keto diet, but I have one kidney and it has nodes on it that we are waiting to get big enough to take off. Ketosis is easy for me to get to if I'm not careful. But, I have really considered it. Over the last month, I've become really nauseous, big d, and serious weight loss. I'm also getting over a UTI. Second one this year. My body hides them. I'm just so exhausted with food, diet, exercise, weight. I have lost another job, because I'm sick all the time. I grew up very hungry like this. I was just thinking I had a parasite today, but it's just my wheels turning. I e been known to become anemic. Just tired and wondered if anyone felt my pain. Thank you, all of you!!

[Midori]

Yes, I have noticed that I cannot manage the spicy stuff any more, and I'm pretty much gluten free too. I can still manage a little bread, but on the whole the Wheat, Barley and Oats are off the menu. I can manage an occasional slice of sourdough, without too many unfortunate repercussions!

Most cakes pies, cookies, Steamed puddings are off, although I can manage Almond based flour cakes. Some chocolate can be bad for my gut, but the darker ones are OK.

I have problems with even mild peppers, and chilli peppers are a definite No as are Eggplants. although I can still manage tomatoes and potatoes.

Rice and Maize I can still manage and some pasta.

I rarely drink coffee as it really gives me a problem.

I have a hernia after gallbladder surgery, and my stomach gets stuck in it sometimes! (result of lifting too soon after surgery) I can live with it.

Cheers, Midori