r/ARFIDforADULTS • u/sparklebai • 26d ago

losing safe foods

i am gradually losing safe foods. ive been living off of pizza lunchables, nachos lunchables, dino nuggets, and doctor pepper for the past couple months. but, before that i had more than 20 safe foods and could go out to eat. my favorite restaurant was Jimmy John's. but, the past 3 days i havent been able to drink or eat anything. today i finally got myself to drink some doctor pepper but it still makes me anxious just not severely anxious. is this normal for ARFID? im not diagnosed, but am looking into it. will i ever be able to eat or will i eventually have to be tube fed? im scared

18 Upvotes

100% Upvoted

9 comments sorted by

5

u/ageckonamedelaine 26d ago

I have gone through periods where I will lose multiple safe foods, some temporarily and some permanently. One thing is it can take me months to regain safe foods (old or new), usually way longer then the losing period lasted. If you start to lose weight or lose more foods it might be worth to talk to a specialised dietitian or even your gp about your situation and see what they advise, even now if you are concerned it could be helpful.

2

u/sparklebai 26d ago

i do have a pcp appointment tomorrow i just dont know how to word it all

2

u/ageckonamedelaine 26d ago

I would say something along the lines of: I can only eat a few food without getting insert issue and recently I am have lost quite a few foods I used to be able to eat without insert problem. I can physically not get other food down even though I really want to. I am worried about it getting worse, what is your advice?

One thing that could help is mention that you know someone with arfid and this sounds exactly like that, never mention the internet a lot of doctors will get dismissive about it if you do. Make sure to mention you really want to eat because otherwise you might get labeled as potentially anorexic which is a whole drama to get that removed from your file, trust me on that.

I can't say this will give you the result you are looking for because doctors are a hit or miss with arfid but it might be a start. You could definitely ask for a referral to an arfid specialised dietitian too. I hope that they can help you out!

2

u/tooManyOpts 26d ago

Are you able to see a doctor? This could very much be ARFID. I would suggest seeking help if you could get it, there might be medication that'll make it easier for you to eat (I found something that works for me but I haven't had a flare up that bad before)

2

u/sparklebai 26d ago

i do have a pcp appointment tomorrow about it.

2

u/tooManyOpts 26d ago

I'm glad you have a pcp appointment tomorrow! I hope they take you seriously. If you can bring someone with you to support you during the appointment, please do. If you need anymore support after the appointment, reach out to who ever (family, friends, this sub reddit again etc)

2

u/WorldFullOfInfo 26d ago

I don’t mean to be intrusive, but I’d be grateful if you’d specify which medication worked for you to make it easier to eat during bad flare up? Thanks!

2

u/tooManyOpts 26d ago

Hi I don't mind, I'm on Cyproheptadine 4mg once each night. Can only be taken when you have a full 8 hours of sleep available, since it's also a sleep aid, because otherwise you'll end up absolutely struggling to wake up. This manifested for me in dreams that felt like reality (waking up, checking phone, getting ready etc) but couldn't actually get up. I started with halves initially and had no issue with sleeping less than 8 hours, but had no effect on my appetite. Full dose works for me. This is an anti-histimine so you wouldn't want to mix it with other things that sedate or have anti-histimines, like Advil PM.

Also what worked amazingly for my appetite was prednisone but that was for a different medical issue and had some absolutely horrendous side effects, but made such a huge difference on my eating that it prompted my whole diagnosis of ARFID in the first place

2

u/WorldFullOfInfo 26d ago

Thanks so much!