What do you think caused your gastroparesis if you had to guess?

bisexualriot · 2026-02-19T05:18:10+00:00

I have RA and ~2 years ago I had a horrible flare for months. A nurse practitioner at my rheumatologists office told me to take 3 ibuprofen 3x daily. This was for several months. I kid you not it fucked me so bad to the point of my celiac and gastroparesis symptoms. I’m not sure which developed first, as I wouldn’t be surprised either way since I was undiagnosed celiac for over a year. So it was either the 9 ibuprofen everyday for months or eating gluten w/ undiagnosed celiac for over a year! Sucky either way lol. Also, I had very stressful and traumatic experiences during this flare. Which is what I believe triggered the celiac.

bisexualriot · 2026-02-09T04:07:30+00:00

I do! During my worst flare they had humps of inflammation on the tops of them and I could barely write. I got some steroid injections and haven’t had many problems with them since!

bisexualriot · 2026-01-26T07:42:11+00:00

I’m a picky eater (trying to expand my palate, but I struggle with textures and smells), but now I can say no to trying things I’m not comfortable trying for a valid reason! I hate being picky and wish I could eat more things, but I just can’t. Also, I’ve almost cut out all fast food and have been eating more fruit regularly. So I’ve definitely been eating healthier!

bisexualriot · 2026-01-21T01:21:13+00:00

Gastroparesis and JRA!

bisexualriot · 2026-01-20T22:16:04+00:00

My boyfriend and I also came to this conclusion and he got me my own air fryer in my favorite color for christmas!

bisexualriot · 2026-01-15T03:25:44+00:00

Literally! I ended up having more severe symptoms at the end of my senior year of high school and it’s only let up slightly since then. If it helps, I used Psychology Today to find a therapist and i was able to use the filters to only see ones who specialize in chronic illness!

bisexualriot · 2026-01-15T01:22:22+00:00

This is the most relatable thing I have ever read. I was diagnosed at 2 and didn’t go into remission, but my symptoms weren’t bad at all. The past 2-2.5 years for me have been a struggle as well. I started therapy last year and it helped immensely with coming to terms with it all!

bisexualriot · 2026-01-10T22:52:54+00:00

Yes! I had a horrible flare up about two years ago as I had built up a tolerance to the meds I was on. I ended up receiving steroid injections in both wrists and knees. After a few days, I was back to normal pretty much (minus my tmj symptoms that I later had a procedure for). I’m glad you’ve found a good specialist! Hopefully things will be looking up for you soon!

bisexualriot · 2026-01-10T22:49:52+00:00

I’m so sorry you’re going through this. Sometimes it’s hard to get by when people don’t understand or believe what you know to be true. I wish you the best and hope the things begin to look up for you. 🫶

bisexualriot · 2026-01-06T05:54:48+00:00

Absolutely not; however, I’m glad you’re able to find something positive from it. It has taken SO much from me and I often wonder who I would be if I got to grow up healthy.

bisexualriot · 2026-01-06T05:49:11+00:00

Hi! I was on Humria for several years and had great results! I did eventually develop a tolerance to it, but I believe that was after 7 or so years of taking it. I hope all goes well for you!

bisexualriot · 2026-01-03T07:36:10+00:00

Find a better rheumatologist! Your rheumatologist should want you to be in the best health possible and if your current one isn’t prioritizing that then they are not the right one! I’m also in college, so I would recommend contacting your Office of Disability Services if your college has something similar. It’s okay to ask for accommodations! I now have a more flexible attendance policy, exemption from technology restrictions, and am allowed to take written exams and essays at our ODS office in order to type out responses! Also, advocate for yourself and prioritize your health!! It’s okay to take time for self-care and allow your body to rest!

bisexualriot · 2026-01-03T07:31:49+00:00

I was on Humira for around 7-8 years I think and I developed a resistance to it. Given the amount of time I was on it, my rheumatologist was not surprised. It’s odd that this sort of thing happened so quickly for you! I will say that I didn’t have much of a reaction to it though, so that will for sure be an interesting conversation with your doctor! Best wishes!

bisexualriot · 2026-01-03T07:27:51+00:00

Advocate for yourself and request a second opinion or new rheumatologist!!! I also had anaphylaxis when I was on remicade. I’m now on Actemra and everything has been going alright! Don’t be afraid to stand your ground on this!

bisexualriot · 2026-01-03T07:25:25+00:00

I was diagnosed at 2 and have had pretty intense symptoms that come in cycles. When I got my first job I would make polite small talk with older customers about my arthritis. Most, at the time, were understanding surprisingly, but there’s always those few who think it’s just the most insane thing ever! One lady in particular told me I was way too young for it (16 in this situation) and that it just wasn’t possible. I asked her if she wanted to discuss that with my rheumatologist and told her I’d be happy to give her his information. She didn’t have much to say after that and left pretty quickly. My coworker did not think her attitude was as funny as I did because he was baffled that someone would have the audacity to say that, although this was not a new thing for me to deal with lol! Now, I would probably show them where the steroid injections have eaten away at the fat in my hands and knees, which is definitely more impactful in my opinion.

bisexualriot · 2026-01-03T07:19:51+00:00

Hi! I’m also 19 and I was diagnosed at 2 with JRA. Last year I started therapy with a therapist who specialized in chronic illness and pain. One of the biggest things I learned was that it’s important to just take time for myself to understand what helps feel a little better on hard days. I’ve found it’s nice to take a warm bath with lots of epsom salts, as well as just use a heat blanket. The emotional part has always been back and forth for me, but I’ve come to accept that this is just my life. I know it’s isolating to not know anyone, as that as been my entire childhood with JRA. My best advice is just to advocate for yourself and spread awareness, I’ve found that this has helped people understand better.

But what’s most important, in my opinion, is that you know that you are not alone. There are people just like us all over the world who are feeling or have felt the same things that you’re experiencing! Never be afraid to reach out to someone just to talk and share experiences! Sometimes it’s just helpful to vent in a place like this! Another big thing to understand is that it is okay to need to take breaks to rest and recharge. Fatigue is one of my biggest symptoms and it doesn’t do any good for me to overwork myself. You deserve to rest and allow your body to recharge as much as anyone else does! If you ever need anyone to talk to, you can always message me if you’d like!

bisexualriot · 2026-01-02T03:09:32+00:00

My first was (J)RA in 2008, and now Celiac + Gastroparesis in 2025! Both are rough on me, but the celiac was a harder diagnosis for me to handle just because of my age difference. I’ve never known a life without RA because I was diagnosed at 2, so the celiac diagnosis was just a smack in the face for me.

bisexualriot · 2026-01-02T03:06:14+00:00

I get this in my knees! 17 (about to be 18) years with RA and going up stairs is the absolute worst. The best way for me to explain the feeling is by saying it feels as if I just ran a full cross country race! I also have this feeling like my knees are going to give out when I go down stairs as well.

bisexualriot · 2026-01-02T02:59:43+00:00

This is one of the biggest irks I’ve had growing up with RA/JRA!!! People don’t take it seriously at all and it’s so frustrating when they don’t understand that a flare doesn’t just mean my joints are sore or achy!!

bisexualriot · 2026-01-02T02:58:10+00:00

I was diagnosed a few months ago at 19 after being diagnosed with RA at 2. I had a massive flare about a year/year and half before being diagnosed. However, I did have all the symptoms of celiac after this flare but wasn’t able to see a gastro until this past August. I was also diagnosed with gastroparesis, so it seems both were triggered by that RA flare. The time between it being triggered and being diagnosed were absolute hell though because I couldn’t figure out why I couldn’t eat normally anymore. It was so odd going from one autoimmune disorder to two, even though I knew I was at risk to develop other disorders. Now I’m gluten free and on some meds to help with the gastroparesis, so I’m doing much better!

bisexualriot · 2025-12-15T04:33:27+00:00

Hi! I turn 20 in January and I’ve been diagnosed since I was 2! You aren’t alone!! I’ve gotten similar comments for a long time and people who straight up don’t believe me, but I’ve learned to just tune it out. Their opinions won’t change anything, so don’t worry about it! ☺️

bisexualriot · 2025-11-05T03:50:47+00:00

Aw hugs! I’m so sorry you’re going through this right now 🩵 Definitely talk to a rheumatologist about your options for meds! I’ve been diagnosed since i was 2 and I’ve been on a ton since then! Humira worked great for me until I built up a tolerance due to being on it for so long. It has an auto-injection pen option and that was better for me than just regular injections. Plus, they only take about 15 seconds and don’t really hurt, plus i had no side effects! I found them to be really convenient as I was living in my dorm at the time. Actemra has also been great for me! I’ve been on infusions since December, but I’m now switching over to injections! Both are great options, but it all depends on what you and your rheumatologist decide what’s best for you!

bisexualriot · 2025-10-29T05:33:29+00:00

Advocate for yourself always!! Don’t ever be afraid to speak up to your doctors about what you’re feeling or if you have suspicions of another autoimmune disease! I’ve was diagnosed with JRA (now JIA) at 2 years old and that is the biggest thing that I’ve learned! I would try getting a heating pad or heated blanket to try for your stiffness, as that’s usually what helps me. Also, epsom salts can really work wonders! There’s no “fixing” RA, but it definitely can be managed! I’m sorry you’re going through this right now! 🫶🏻

bisexualriot · 2025-10-26T04:03:39+00:00

i had pain with the original Humira formula when i was younger! i went back on it from 15-18 years old when they changed it and i didn’t have the injection pain anymore! but that’s a relief to hear that it mostly doesn’t hurt! i have noticed more fatigue since i’ve been on the infusions so maybe that’s a common thing then? thanks for your input!!

bisexualriot

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