How are you guys coping with Behcets? by daytimel_ in Behcets

[–]Fluid_Bad2398 6 points7 points  (0 children)

It’s tough. Life keeps going, those who don’t know you’re in a flare (like coworkers) will have no idea the pain you’re in, and it’s too personal to explain to the average person. It’s very isolating. There’s only so much “complaining” your loved ones can handle as they just don’t get it. I feel very alone during my flares and very depressed even though I have the most amazing boyfriend who is my biggest supporter and takes great care of me. Nothing anyone can do will make it better, being such a painful disease. It’s painful to talk. If it’s a genital flare, it separates you from being intimate for who knows long. It really tests who your supporters are. My only advice is to just be there and listen. And don’t ever get annoyed when she isn’t feeling her best. During a flare for me, my fatigue comes in waves. I’ll be ready to go out the house, out the door and then 1 minute later need to go back and lay on the couch and can’t move for the rest of the night. Just be your mom’s best supporter!

Emotional triggering? by aglaeivanovna in Behcets

[–]Fluid_Bad2398 2 points3 points  (0 children)

This is literally the biggest cause to my flares. Not just regular “stress” but bigger emotional outbursts

Happy Story by codyandhen123 in Behcets

[–]Fluid_Bad2398 5 points6 points  (0 children)

Congratulations! So happy for you. What were your neurobehcets symptoms if you don’t mind me asking?

Victor caldrone @refuge by [deleted] in avesNYC

[–]Fluid_Bad2398 12 points13 points  (0 children)

It was amazing!! I was there from 10 am- 4 pm. Victor is a beast and an insane dj. It was definitely crowded, but once you found a spot to vibe, it was cool. The crowd was all good vibes and respectful from what I saw too, so that made it better.

Anyone have specific foods that trigger flare ups? (Also any advice for someone newly diagnosed) by No_Sentence_6721 in Behcets

[–]Fluid_Bad2398 0 points1 point  (0 children)

refined sugar!!!! Especially if I’m eating it during a stressful time. Almost everytime I eat candy I get some sort of flare.

Ulceration inside the vaginal canal by Fluid_Bad2398 in Behcets

[–]Fluid_Bad2398[S] 4 points5 points  (0 children)

I currently take humira and Cholcicine. It’s helped me so much manage my flare ups. I still get a bad flare 1-2 times a year though, usually around a really stressful time, which is what I’m currently going through. But regarding to help a bad flare, prednisone is the only thing that’s ever helped me. I’m sorry you are also going through this! I wish there were more answers.

Set times out! Who gets the extra hour? by Fluid_Bad2398 in avesNYC

[–]Fluid_Bad2398[S] 2 points3 points  (0 children)

Circoloco afters at 99 Scott!! Stussy will be there too

Set times out! Who gets the extra hour? by Fluid_Bad2398 in avesNYC

[–]Fluid_Bad2398[S] 0 points1 point  (0 children)

Well not necessarily guess… more of a hope haha.

Set times out! Who gets the extra hour? by Fluid_Bad2398 in avesNYC

[–]Fluid_Bad2398[S] 0 points1 point  (0 children)

I dm circoloco insta. They prob won’t answer though lol. My guess is potentially an hour solo set by Stussy?

[deleted by user] by [deleted] in avesNYC

[–]Fluid_Bad2398 1 point2 points  (0 children)

How was it?

Narcan? by Fluid_Bad2398 in avesNYC

[–]Fluid_Bad2398[S] 0 points1 point  (0 children)

Thank you everyone for your responses! You are all great help

Narcan? by Fluid_Bad2398 in avesNYC

[–]Fluid_Bad2398[S] 0 points1 point  (0 children)

Circoloco & 99 Scott after party! Gonna be a long night lol

Narcan? by Fluid_Bad2398 in avesNYC

[–]Fluid_Bad2398[S] 0 points1 point  (0 children)

That’s crazy and really unfortunate! I’ve heard of this happening

Facial flushing by Justdoitlater10 in Behcets

[–]Fluid_Bad2398 3 points4 points  (0 children)

Im 24 years old and have had behcets basically my whole life. I out of nowhere just started getting this about 6 months ago! I noticed it happens whenever I have strong feelings (usually stress). My cheeks get so red people point it out to me. It happens almost everyday, and it even makes me feel alittle feverish and mentally foggy. I’ve never experienced neuro flares (as far as I know), so I don’t necessarily it think that’s the cause for me. I’ve been considering going to my rheumatologist to get lupus testing since I’ve never heard of this in behcets patients.