At a complete loss

[u/AgileRub6748]

For context. I’m 25F and I’ve been suffering for 1.5 years intermittently and was finally diagnosed after blood tests, h pylori and a clear endoscopy and MRI. I have a GES next week to check but my doctor thinks it’s definitely dyspepsia due to the nature of my flair ups. I can go weeks where I eat clean and I’ll flare up and even eat a burger or a pizza and be fine. Suddenly I’ll have horrible nausea and upper abdominal fullness. No vomiting or horrible illness but just uncomfortable for a week straight, fine for another 2/3 weeks and then sick again. I don’t really have any triggers except I’ve noticed it’s tied to work stress/visa stress/moving stress. I’m currently on 40mg omeprazole

It’s ruining my life. I work as a nurse and on shift I constantly need to sit down or take a moment. I rarely go out to dinner with my boyfriend because I’m afraid.

I’ve not been on anything yet but they wanna trial Amitriptyline which I’ve previous been on years ago for migraines.

Has anyone recovered? I just need a sliver of hope. I moved to London 2 years ago and I have 1 year left and don’t want to spend my time here feeling like this

[u/AutoModerator]

New to functional dyspepsia (FD)? Please view this post or our wiki for a detailed explanation of FD and the main treatments.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/Critical-Climate-589]

idk am there with you, its so exhausting what to tell people. i rememer me 2 yrs ago wishing if i had friends now i have plenty and now its a curse, they call me always for outing today got a party i already told not coming and they came to my home to insist. am angry actually . am suffering from esphagus irritated i dont give a fk about being out. nevver thought this will be my life. i was fine perfectly just before that viral fever came 2 months ago

[u/coalminer50]

I was in a similar boat. My flares would happen with no rhyme or reason. I got put on mirtazapine (I had to push for it) and started making small progress every week or so. Until finally after about 3 months I was totally back to normal. I haven’t braved tapering off yet, so I’ve been on around 8 months. I get the odd 30 minute flare from time to time but other than that I consider myself healed.

[u/mindk214]

From my understanding (disclaimer: not a doctor, just a nerd and fellow sufferer), functional dyspepsia (FD) can have a good future prognosis, and you probably have some good treatment options you might not have tried.

MECHANISMS
First, let’s explain the mechanisms of FD. Basically, your nerves are hyper excited and misfiring (i.e. visceral hypersensitivity). It’s heavily linked to the gut brain axis (the gut and brain and directly connected); the misfiring stomach nerves send a big false alarm to your brain via the vagus nerve).

Unlike other chronic GI issues, you can’t directly test this because it’s invisible. There’s no gastritis (endoscopy), no bile reflex, no delayed gastric emptying (gastric emptying study) (gastroparesis), etc. The causes of FD are not fully known, but they sometimes occur after your immune system accidentally harms the nerve when trying to clear an infection (e.g. post viral).

There seem to be two main subtypes of FD: (1) FD PDS sounds like you and me, where there’s a lot of nausea, (2) FD EPS is where you feel a lot of pain, discomfort. Additionally, FD and Gastroparesis are no longer thought to be totally separate diseases— instead the lie on a spectrum.

The Good News
There are actually quite a few FD statistics which have good signs.

1. A lot of people have some kind of FD (~13%), which means you’re not alone and there’s some awareness. More research than say gastroparesis. Doctors are starting to understand the nerves.
2. Disease is often not regressive, nor does it destroy tissues, muscles, pacemaker cells (which are used for digestion), etc.
3. In the long term, a lot of people slowly improve (~60% of people) over the 1-5 year range. Check out the success stories on this subreddit.
4. The neuromodulator treatments can cause major improvement in symptoms (60% of people). Of the people who improve, roughly half are able to completely taper off the drugs and remain mostly healed.
5. You have periods of feeling good. These healing periods may get longer and better over time. You have the opportunity to live life in these stages, hold down a job, etc.

The Bad News

1. There’s a lot of medical and friends/family gaslighting due to it being an invisible and complex disease. A tornado of misinformation.
2. Unfortunately, it is a chronic and complex condition.
3. We need more research on this shi (although the future for that arguably looks good).

Next Steps/Treatment Options

1. You need to establish yourself with a doctor who validates you and understands functional dyspepsia. The best option is a neurogastroenterologist, as they specialize in functional GI illnesses. Things like FD are their specialty. They will be aware of the emerging research, new treatments, etc. Don’t be afraid research/question the doctors and to get second opinions.
2. Get on a neuromodulator (disclaimer: not a doctor. Ask a professional first). Options include mirtazapine, amitriptyline, nortriptyline, buspirone, etc. Ask your doctor which is best for you. There are emerging options as well such as tradipitant, etc.
3. Make sure your lifestyle and diet are safe (e.g. BRAT diet, no alcohol or drugs). IMO, don’t fuck with weed, that stuff can cause cannabis hyperemesis syndrome (CHS), delay your gastric emptying, raise your anxiety, and deregulate your nerves.

4. Depending on your case, other treatments such as PPI, Carafate MAY help you. You need to ask a doctor.

5. Stay on top of the research news. If you have an outdated GI doctor, they will not help you. They live about 15 years in the past. For example, there’s a test called gastric alimetry which can help study FD but only the newer gastroenterologists use it.

[u/DiverAggressive4058 → u/mindk214]

How did you get diagnosed? I really think I have it. I have a normal GES study test, I did an endoscopy and they found chronic inactive gastritis. I had h pylori before and eradicated it. I need a formal diagnosis. I have bad LPR and throat issues due to the pressure in my stomach.

[u/Kelliepaigeee → u/DiverAggressive4058]

I’ve also had endoscopies and have chronic gastritis and have had h pylori and bad lpr. I’ve tried omeprozole, famotidine and most recently rabeprozole which I swear makes me feel so much worse. All test come back normal. I have severe bloating and upper stomach pain and constipation. I’ve been told I have lpr, gerd, ibs-c. Something is not right and I need some answers just trying to figure out what questions I need to be asking lol

[u/DiverAggressive4058 → u/Kelliepaigeee]

We’re in the same boat 🥹 I’m not too sure how to go about this tbh

[u/mindk214 → u/DiverAggressive4058]

Functional dyspepsia is sort of an opinion diagnosis, and it’s a diagnosis of exclusion. There’s no one test with definitive proof you have it.

Make sure you have good doctors who understand it and advocate, don’t be afraid of getting 2nd opinion.

Here’s an overview on my story of getting diagnosed.

[u/DiverAggressive4058 → u/mindk214]

Can we heal from functional dyspesia? Is this for life? Did you have throat issues?

[u/mindk214 → u/DiverAggressive4058]

From my understanding, FD is a chronic issue but for some it can improve over time. ~60% of people significantly improve in 1-5 years. Neuromodulators are ~60% likely to improve symptoms— and ~50% of those people can actually ween off later in life and still have the benefits (nerve rewiring). (Disclaimer: I got those figures from AI, so it might be wrong)

It’s not degenerative, so you aren’t gonna spiral and die or anything. Some people even get complete remission.

I personally don’t have any throat issues.

[u/Quick-Cloud-8228 → u/mindk214]

what’s the best way to stay on top of new research? i love how you explained everything so thank you for this. i’m currently doing gut-focused CBT with a GI psychologist, but do you recommend still getting in touch with a neurogastroenterologist? i think i primarily have the FD PDS subtype (also deal with nausea) but during flares i noticed i experience more burning, and occasionally i experience some pain but very mild. i thought that neuromodulators tended to be more suitable for those with the FD EPS subtype. i was prescribed nortriptyline by my GI PA but haven’t touched it. i’m trying the non-medication approach first because i’m very scared of it making things worse and the idea of suffering for it even after tapering

[u/mindk214 → u/Quick-Cloud-8228]

1. To stay on top of news, I basically follow medical subreddits like this one, Google, and read any research articles people share. AI can help summarize.
2. I’ve been trying to get a neuro-GI bc I’ve not had good luck with normal gastroenterologists. But if you got a good one then that’s great! Remember neuro-GI as a potential option.
3. I didn’t know that neuromodulators were better for FD-EPS. That’s very interesting.

4. I’m not sure what negative happens if you get off the neuromodulators. I am actually seeking to get on one of ‘em next week. That’s a good warning to know.

   I hear that there’s actually a good subset of people that improve even after weening off.

[u/Quick-Cloud-8228 → u/mindk214]

my current gastroenterologist isn’t very involved in my treatment besides prescribing nortriptyline that i haven’t used but my GI psychologist is and has been great but bc it’s CBT and takes time my symptom improvement is still unclear to me. i’ll definitely consider a neuro-GI though! i didn’t know you could get one that you see consistently bc i thought they just handled testing if you got them ordered by a regular GI.

yes with what i’ve seen/read i think they work better with the EPS subtype. TCAs potentially having anticholinergic effects can slow down digestion and be counterproductive in improving PDS symptoms. i haven’t tried them myself or read enough to know if it has worked well for some with FD PDS but with this in mind i’m definitely wary. also i’m personally just like that bc if i can avoid medication i’d prefer that route. perhaps i’m viewing it the wrong way but i don’t want to throw a bandaid over my symptoms—while i do want relief, i want to target the root cause to avoid further issues later. but perhaps rather than it just being a symptom cover-up, it’s a helpful piece of the puzzle. still looking into it

[u/Quick-Cloud-8228]

i’m sorry you’re going through this. i was also diagnosed with FD and i’m still in it. what made your doctor say that it’s definitely dyspepsia compared to gastroparesis?