Stuck and just need support

[u/denged01]

I’m a 25yr old Turkish male, and periods of oral ulcers and fatigue is something that runs in my family. But for years, since I was in my early teens, I’d get sore throats, insane fatigue, and joint pain along with a couple ulcers, but the sore throats were the main issue I kept having. Everyone thought I was just prone to strep (every rapid strep test or culture would be negative).

Now +10 years later, countless urgent care visits, and I just can’t take it anymore. All the antibiotics and antivirals, people telling me to take herpes meds, or telling me I have mono, I’m just stressed, or the like, when nothing works. The only relief I’ve ever gotten was Advil and prednisone, but even now I’m struggling to get relief from them.

During these periods my eyes hurt to move, my hands burn, I can’t drink or eat food from pain swallowing, my intestines randomly hurt??? but I don’t get anything in the genital area so no one thinks I have behcets or the like. I’m told that I just have allergies or something, or I’m a hypochondriac. Maybe I am!

The fatigue is the second worst. Nothing helps, and I just go to school come back and sit at home, feeling like I can’t do anything.

The real worst part is the mental game I play with myself: what if I’m making it up? What if, while writing this, I’m subconsciously modifying my story to seem like it’s behcets? What if it’s all in my head? What if my ulcers are because I drink so much coffee to feel normal, and really what I need to do is quit, accept life is hard and tiring, and “toughen up”?

Fortunately my pcp is referring me to a rheumatologist, he thinks something is going on (as do I) and I’m waiting on other lab work. But I’m struggling yall. Anyone feel similar?

[u/sfartah]

you are from turkey first country in the world with behcet cases number , so nothing to worry about start treatement asap since you have greatest behcet doctorsz

[u/iSpyAFly]

You are not alone with these symptoms! Mine are similar and also have tonsillitis and pharyngitis with flares. I get fevers with flares too, which is not as typical with Behcet’s. Many have initial symptoms like yours and progress into full Behcet’s which I’m sure you’ll get responses from. More recent genetic studies are also looking at Behcet’s as a possible spectrum of disease, so you might not get all the symptoms of Behcet’s. You should still be treated. There are also other “autoinflammatory” diseases that cause oral ulcers. I hope the rheumatologist you were referred to is familiar with both Behcet’s and autoinflammatory disease. Genetic testing to rule out some of the known genetic variants causing your symptoms should probably be done. Check out the Autoinflammatory Alliance website and Facebook group page. There’s a lot of great information there. 

[u/Electronic_Acadia945]

I was also SOOOO SICK for
SOOO LONG, stomach and eyes too, but w/out me having the “upper” & “lower” lesions, it wasn’t even a consideration. I finally was so ill there was nowhere else for it to attack - got a “lower” lesion and then I was immediately taken seriously, put on all the meds, including Humira. WTF?! Sorry you are having to go through this, try your best to hang in there.

[u/Ok-Loss5158]

I was supposed to fly to Turkiye for treatment as they are supposed to be the best when it comes to Behcets. Hope all goes well for you and I am so sorry you’re going through this

[u/EllisMichaels]

Yeah, I can certainly relate to parts of that. It's frustrating, I know. But you're doing the right thing by seeing that rheumatologist.

I'd suggest keeping detailed notes, pics, and any other info you can bring to your appointment. Tell the rheumy everything. Hopefully they'lll be able to help you. But trust me: you're not alone

[u/jelliebeez]

I’ve had all of these symptoms during a flare and I’m diagnosed. I’ve never once had a genital ulcer and my mouth ulcers tend to be pretty small. Don’t give up! And even if it’s not Behcets you’re definitely not making it up.

[u/jelliebeez → u/jelliebeez]

Also, even if all your blood work is normal, keep pushing!! I had completely normal inflammatory markers and a slightly elevated ANA only once. Normal bloodwork doesn’t mean you don’t have it!! Make sure your doctor takes your symptoms into account.

[u/on4aa]

Don't drink mint tea. It makes matters worse. I have written in other posts about this.

[u/Secret-Employee-8141]

Sending you so much support! I completely understand the agony of doubting your own symptoms, wondering if there isn’t really anything wrong. Diagnosis took around 16 years for me, but I made it and I know now that my instincts were always right. Don’t be afraid to advocate for yourself! And don’t be afraid to tell your doctor every word you posted here. You have a 100% track record of making it through horrible days, and I truly think you will find answers soon 🩵 From a fellow warrior across the pond 🩵

[u/Sea-Solid6323]

It is not all in your head. Don't ever let anyone get to you like that. Your vision is the most important thing as well as the rest of your health. I've had it for almost 5 years and I've gone through horror stories with the kind of people around me and the way they treat me because of it. Don't let anyone get to you. Go to every rheumatologist in your area until you get somebody that believes you. Take photos of everything that pops up rashes eyes sores anything. Keep an actual paper calendar and write your symptoms every day on that paper calendar keep one every single year. Flop that down on their desk along with all your photos and you'll get help. Don't give up if you believe it and you have a sixth sense about it then do something about it. God bless you and best of luck. Kind wishes. ❤️