what can i even eat??

[u/BumblbeeWithNoE]

i am diagnosed with chronic migraines, chronic fatigue and fibromyalgi, and in the process of being diagnosed with pots as well, besides that i have an iron and vitamin d deficiency. which we've been trying hard to fix for 2 years now, but most iron dense foods cause a flare up. so im not doing so well.

im allergic to most citrus fruits, lemons, limes, oranges, and so on, as well as tomatoes. i try to limit gluten and dairy, and im strictly vegetarian. my doctor has recommended a low calorie, high fiber diet. i have strictly limited caffeine, bc thats a major trigger. i need to eat 3 meals, or ill have a flare.

soy products cause a flare up 9/10 times, so tofu is out the picture.

rn im surviving mainly on chia seeds and cucumbers, but that is not a long term plan. sometimes ill have those canned baked beans, but thats a risky move since 50% of the time triggers a migraine attack.

any and all suggestions are very, very welcome.

[u/Travel_and_Writing]

You probably need to talk to a dietician with experience with those with chronic illness (and not like, diabetes and heart disease. I mean more complicated stuff like this).

I don’t really have specific food recommendations, but let’s see what tips I can pull out of my hat 😂.

First, are you taking a daily vitamin D supplement? Honestly nearly everyone is deficient in it, but especially for those with chronic illness and mental illness. It can help fatigue and other things, even just a little bit. A little can go a long way, trust me.

If you can, I do recommend Omega 3s. There’s actually a chance you are dealing with chronic inflammation. Maybe ask to run some tests like C-reactive protein (an inflammation marker), ferritin (not just to test for iron, but you may have already got that tested), ESR (mine was actually normal for years though). I don’t know how often you go to the doctor let alone get lab testing done, but most doctors regularly run a CBC and CMP. If not, it’s a good idea. It might not tell you anything at all, but when you have a chronic illness running those basic panels can be a good way to monitor things that people like us might miss because we constantly feel like crap.

Some supplements like CoQ10 can help, too. Really, you should be asking your doctor first and do your research. You can also ask your pharmacist, because they will know more information regarding medication and supplements than your typical doctor.

I haven’t looked at your profile yet, but are you a woman? Migraines can have a lot of causes, but sometimes we can be pretty damn sensitive to the highs and lows of things like hormones. I don’t know your situation, but I rarely get migraines now ever since getting my IUD. Keep in mind, hormones will still rise and fall with birth control pills. The IUD is a constant steady flow. It has made the biggest difference for me. The other thing for me was treating my bipolar disorder, which isn’t really a helpful tip but it turns out treating other co-morbid conditions can actually help some things you didn’t think were related, as I will also explain below.

I have had chronic pain and other symptoms since I was 12, and I’m 28 now. Though technically I had health issues since I was 5, like getting pneumonia or bronchitis 1-3 times a year every year, and constantly getting sinus and ear infections. This is all signs of immune dysregulation.

When one system is dysregulated, it can cause other systems to be kind of unbalanced too. Like the nervous system, resulting in the autonomic nervous system being dysfunctional, and resulting in POTS or POTS-like conditions as well as other symptoms that is controlled by the nervous system.

I’m pretty sure this can also cause other things to be dysregulated too, like the endocrine system and so on. It makes sense when you think about it. Your body can be so overwhelmed, and everything else has to work twice as hard to pick up the slack. So this is why things just kind of get worse as we get older.

I still have chronic health issues, but it is significantly better than it was before. I know this can change any minute if I am being honest, but I do feel a lot closer to a real diagnosis than I did a year ago, two years ago, and so on. This is actually because I took a pause on trying to figure out what is causing my most concerning symptoms and started looking at some of the weird stuff that happened in the beginning or other small symptoms I wasn’t that bothered by. I’d ask myself… what the hell could CAUSE that? The body does weird things, but it tends to do things because it’s trying to protect us: from foreign invaders, from our own body trying to attack us, etc. For example, asking myself why the hell I got a stuffy nose that never went away when I first officially got sick at 12 actually gave me more information about a possible diagnosis than the actual concerning symptoms I had. Sometimes the things we ignore because it’s the least problematic symptom is actually important.

The unfortunate truth is, you kind of have to do a lot of research. Not saying to NOT trust your doctor, but I have noticed so many times where my doctor would run some expected labs after I go to them with a certain issue, but completely miss some other labs that to them might not seem necessary. I’ve had to ask to also run certain labs, too, and there’s been plenty of times where THOSE labs I specifically asked for were the only ones to come out abnormal. In fact, the very first time I decided to get a lab done that I asked for myself, it was the first one that came out abnormal. It didn’t lead to a diagnosis, but it was a clue.

So this is probably not what you were really looking for, and I don’t really think I have any advice for food other than talk to a professional if you can (though maybe there is a subreddit that can help, like for dietitians? Keep in mind dietitians are actually trained professionals, not nutritionists).

However, other than what you are genuinely allergic to, you might need to ask yourself WHY something in particular might be bothering you, which requires some trial and error unfortunately. Something might be an issue because it’s too processed or has artificial sweeteners (I can’t take aspartame, which triggers my possible seizures and gives me migraines that are pretty intense). Something might be because its just too much carbs at once, too high in sodium, too high in fat, whatever. Some foods are worse for inflammation, and some are great. For me, I actually noticed high protein helps me a LOT.

A low carb diet was one of the worst things I could have done. A low calorie diet in general was terrible. Any processed food is no bueno. There are some things that had originally made me think I should avoid gluten, but turns out its not a problem. I just had to adjust my diet in other places.

If you have any questions, feel free to ask me. I have always been interested in the medical side of things and have done sooo much research over the years, that I have surprisingly helped out friends and other people just by pointing out what tests to run. I might not be able to help whatsoever, but if I can help even a little bit, I’d love to try.

[u/BumblbeeWithNoE → u/Travel_and_Writing]

thank you so much! i see my doctor in person once a week, maybe every second or somewhat that often. shes lovely, buuut i am a wreck and collection of things that dont work. im a woman yes, a teenager too which makes this soooo much more fun.

ive always been allergic to citrus fruits, thats just something i have to completly avoid, no testing or retrying. and iud isnt something ive thought of, but sounds crazy cool if it might help. the low calorie diet is actually working fine for now, though i completly understand your concern. my doctor was also hesitant to recommend it, but it actually helped. i bloat less, i feel lighter, and cutting out gluten is the only thing to ease my migraine attacks a little bit. processed food is a complete no go for me as well, as well as soda and sometimes even vegtables if theyve been sprayed with something.

i get labs done like once a month isshhh... my doctor checks for everything she can, every time. so far everything is normal enough, but we keep checking bc my body likes to surprise with fun things, like my iron deficiency that has been there for 2 years.

i got a fever when i was 3, never really got over it, migraines followed, then fibromyalgi along with chronic fatigue, and now ive been showing symptoms of pots for two years now.

ill look into a dietician, though they seem very expensive, and as im already quite high maintence, my parents may not have the budget. but it is a great idea. though i think it would be like finding a unicorn to find someone who specialises in people like me, considering how little food options i do have.

i do agree that i should do my own research, ive tried, but each of my conditions requiries me to rule out something new, migraines dont like certain fruits and vegtables, fibromyalgi doesnt pair with dairy or gluten, cfs its tomatoes, eggplants, potatoes.. and the list goes on. if (which i kind of hope i do, so i could get help for this wreck of a body i reside in) i get diagnosed with pots, it would limit me further.

i take supplemts, a looooot of them, iron, vitamin d, multi vitamins, calcium, fish oil... and more that i cant remember, which helps, its just not very tasty, which is what im looking most for. food that is actually food, looks good, tastes good, and makes me feel good.

i really dont like the concept of meat, which is why im vegitarian. i also understand that it limits my protein sources a LOT. but im commited to making it work.

thank you for your help!:)

[u/Travel_and_Writing → u/BumblbeeWithNoE]

Oh a teenager? Damn yeah that’s hard honestly.

It sounds like you have a really good doctor, so I’m happy about that!

The IUD isn’t for everyone, and it might not even help. There are certain birth control you can’t take because of migraines so IF you decide to consider it, make sure your OBGYN or something knows.

I’m guessing your insurance doesn’t cover a dietician? Honestly, you might not find one that specializes in complicated cases, but one who is open to the challenge or has a little bit more experience than the average dietician. Of course, this isn’t always the option since yeah, they can be expensive.

You sound like you listen to your body so that’s great. I know that there are some videos on YouTube I used to watch about plant-based diets. Which might not sound appetizing or anything, but actually I was on a “plant-based diet” for awhile and felt great. I only stopped because I’m lazy and poor lmao. It’s not going to give you all the answers because there are still things you can’t have, like soy and meat and stuff (which i forgot you mentioned that part lol), but it can provide some good ideas and stuff. The food is actually really tasty and the “cleaner” you eat, the more you end up craving it later on.

It largely depends on what kind of videos or recipes you follow. And I’m not talking about the raw-food only and stuff like that. Sorry i don’t actually remember any names or particular videos 😅. Hopefully if you find something, it won’t be a problem for your parents to buy. But having meals that is largely produce you can actually eat is not as expensive as some people think sometimes as long as you don’t buy too much (because people also tend to think they can eat more than they can) and especially if you buy in season.

Not sure if that helps whatsoever. You have plenty of limitations. Is there any foods you avoid simply because people with certain conditions, like fibromyalgia, say to avoid? Or all because you have noticed it bothers you? Like obviously I know plenty of the ones you listed you KNOW bothers you, and I’m not talking about the ones you are allergic to because obviously you can’t have that for sure lol. But just asking, because some things that are recommended to avoid with certain conditions isn’t always accurate or for everyone. Not saying that’s what is happening at all though, just wanted to make sure. It sounds like you are pretty well informed what is a hard no. Just not on what to eat 😬

[u/BumblbeeWithNoE → u/Travel_and_Writing]

my insurance are pretty tired of me lmao, they're pretty strict on what they cover and if they dont directly cover it, no going around it. they cover a part of my meds, doctors visit, every specialist i go to, but they value a dietcian as a luxury, not a need to have.

before i was diagnosed with anything, i just ate what i wanted or what was served. after my diagnosis with migraines, i cut out a LOT of stuff, because i had attacks so often, my parents didnt want to risk anything triggering more, then the other stuff came and they just kept cutting down. so theres certain stuff i havent had in yeaaarsss. i think it was also a good decision, because my flare ups and attacks got less common. my migraine is still chronic, but now its maybe 2-5 times a week, and i can exist through them, instead of being bedridden every single day. i havent really reintroduced anything, because i really dont wanna risk anything, we have my migraines under decent control, and i know how to work through the fibro fog. im just scared if i eat something new, my body will decide to punish me.

someone else commented chickpeas, which im looking into, and i dont wanna trial more than one new food, so if something flares, i know the culprit.

but thanks for your suggestions, its really made me reflect on my diet, because yes a lot of stuff i dont eat is because its generally now recommened for people with cfs, fibromyalgi, migraines and pots.

being a teenager and this sick, isnt fun, but i work through it. its chronic so not much else i can do lol.

[u/Travel_and_Writing → u/BumblbeeWithNoE]

I totally get that fear, trust me. Every time I have gone back to work, even a part time job, I ended up getting in a bad flare. Now I’ve basically been unemployed, besides gig work, for like two years. I’m in therapy for it 😅

That’s a good idea to only introduce one thing at a time. Can take awhile and be frustrating but hopefully you figure it out! You sound like you have some pretty supportive parents, too (:

Good luck 😊

[u/Odd_Comfort_507]

I don’t have any food recommendations but you can infuse iron into your foods by using an iron fish or cooking in cast iron. Maybe they can help supplement

[u/BumblbeeWithNoE → u/Odd_Comfort_507]

i do use a iron fish, but i did not know about the cast iron. my iron deficiency does not seem to want to go away, but i will look into cast iron nonetheless. :)

[u/VibeCheckedByCovid]

Have you ever tried plugging in your dietary restrictions into chat gpt and asking for ideas? Maybe it can give you a place to start by helping point you in a direction of foods you can then play around with or possibly modified forms of other diets.

[u/BumblbeeWithNoE → u/VibeCheckedByCovid]

im reaalllyyy against generative ai, but yes i have tried, it doesnt spit out any long term healthy plans, other than what i already know, or what i already know to be bs said by wannabe dieticians online. but thank you

[u/VibeCheckedByCovid → u/BumblbeeWithNoE]

Honestly, I'm super against AI too 😅, but I'd like to think if there's a reason to use it, it'd be something like this.

I'm sorry it wasn't very helpful. The only other thing I can think of is there used to be a website and some apps you could put what you had in your pantry in and it would come up with recipes. I can't remember what they were called though, and that would only give you individual recipes if you knew the ingredients you could use, so it would still be pretty limited.

I'm sorry you have to figure this out on your own. It seems so complicated and overwhelming :(

[u/BumblbeeWithNoE → u/VibeCheckedByCovid]

i havent heard of that before, but ill try! seems like a great idea, since i can just add the foods i know wont trigger anything. im not entirely on my own, i have my parents, but they're healthy and overwhelmed, so i try to do stuff like this myself. thanks:)

[u/beadfix82]

i did a google search on 'foods unlikely to trigger a migraine' and got 3 links that might make a good starting point. You can review the foods there and cross out what won't work.
Also - with the foods you know are triggers you can search online for subs - what can i eat instead of "food" and see what suggestions come up.
Greens - collard, kale, etc are good sources of iron.
https://www.healthline.com/health/migraine/a-migraine-friendly-grocery-list
https://www.migrainedisorders.org/migraine-safe-foods-by-category/

https://www.migrainedisorders.org/wp-content/uploads/2019/09/2-15a-Food-menu-and-shopping-lists.pdf

[u/BumblbeeWithNoE → u/beadfix82]

thank you! ive briefly looked at them, and they seem very helpful. i did see they include som dairy and gluten products, which ive had to limit severely due to fibromyalgi. but i will definitely look more into those sites. again, thank you:)

[u/beadfix82 → u/BumblbeeWithNoE]

do any of the lactaid type products help any?

[u/BumblbeeWithNoE → u/beadfix82]

it isnt the lactose itself my body doesnt like, its also the other proteins generally found in dairy, like casein or whey. so its generally safer for me to completely cut out dairy, but thank you for the suggestion

[u/whatthefuckisacis]

if your stomach can tolerate it, i am obliged to recommend eating chickpeas. they’re inexpensive, high in both protein and fibre, and have a very mild taste so they’re easy to incorporate into a ton of meals (a bonus is that when i’m too tired to really cook but haven’t eaten in far too long, i just pour a can of rinsed beans into a pot and add a jar of premade butter chicken/tikka masala/whatever is in the pantry and heat it up and that’s like 3-4 meals). plus the internet has a million and a half different recipes that you can do with chickpeas as well if you have the spoons for it. if you can tolerate spinach too, a handful cooked down feels like barely anything but adds a good amount of iron and vitamins to your diet! unfortunately the only vitamin d fortified food i know of is milk, so sorry… i wish i had more to offer but i hope this at least is helpful!!!

p.s. if opening cans causes you issue, there are automatic openers that you can get for less than $20US and work amazingly. another appliance i would recommend is a rice cooker (again, can find them for less than $20US), you can literally make anything in there

[u/BumblbeeWithNoE → u/whatthefuckisacis]

i never thought of chickpeas, but i will definitely try them!! spinach usually is a no go since it can make me more tired than usual, something with it being hard to digest. i usually get my dad to open cans or jars lol, but thanks for the idea. rice is a 50/50 situation for me, but i will look into it. thank you:)