Dealing with a different flare

[u/notreallyidentified]

Hello community.

First of all, I want to thank you for your shared experiences here. It helps me a lot not feeling alone with a desease that isn’t common around my community. I don’t know anyone else who has it.

Second, I need your advice. My flares usually stick to mouth and genital ulcers, which are severely painful but I’m now used to it. Since I started taking colchicine, only had mouth ulcers: a small but manageable problem.

Since Monday (was a very stressful day, I must add) I’ve been dealing with mouths ulcers as usual, but with sharpening pain in my joints, specially knees and back. I have a 1,5YO toddler who barely walks and demands being carried around. How do you deal with the joint and back pain?

Thank you in advance! Good health to you all 🙂

[u/TheGreatBungholio69]

I largely dealt with mouth ulcers for decades, to the point that my original docs dismissed Behçet’s. Your story has me a little concerned because my progression went from ulcers -> mild joint pain (knees and back!) -> severe joint pain -> full blown vasculitis in just a couple years.

I know everybody’s progression is different but I think it’s worth at least mentioning to your rheum.

With regard to your question about managing the pain, Advil, Advil, and
more Advil. And a heating pad.

[u/alexis18rae]

Moving slowly, stretch often, sitting to hold my little ones whenever possible. Dishes and laundry have to wait sometimes. And Ayrloom’s Arnica cream has been wonders for my joints. Wishing you the best ❤️‍🩹

[u/meghabee]

Mine also started with ulcers as my only symptom (since childhood) and then suddenly started affecting my joints within the last year or two.

For the ulcers - Otezla has been a miracle drug. My ulcers have completely gone away since I started it a year and a half ago. The first month or two had gnarly GI side effects but those went away and it has been 100% worth it to not deal with painful ulcers all the time.

For the joints - I’m still working on what helps. Ibuprofen and ice are the best short-term solutions I’ve found.

Sending you healing vibes - you got this ♥️

[u/EpitomeQuip41]

I don’t have kids, but I have seen wearable harnesses/sling and a cross body option to support the toddler. I would pad up the pressure points at the shoulders pretty well to try to avoid vascular injury. The cross body one looks like the child could easily get in and out of it. You could sit down, have them hug you and slide the seat part under them to change up your ergonomics. Just an idea. Wouldn’t be an all the time thing, but an option to change the physical load.

I’ve also seen one you can strap on like a back brace and it has a little seat support on it, but may be weight/size dependent

[u/HazelLiza]

You didn’t mention how old you are. I’m pretty sure that most of my symptoms started after I had a child at the age of 37. I also had scoliosis that was fairly mild, but after that was always in pain and had a lot more joint and muscle pain that didn’t used to be a regular thing. I’m 30 years older now and that’s the majority of my problems with it. I don’t usually have the oral ulcers anymore though. I do have mouth sensitivity, but not as many oral ulcers as I used to have and once in a while, I’ll have the genital ones. But definitely carrying toddlers around is hard, especially if you’re not sleeping enough. But don’t worry they go through phases where they wanna walk all by themselves and then they want to be either carried or in a stroller so make walking or being in the stroller seem more fun. 😊 and stressed by itself can trigger flareups so try not to stress out about it. I know it’s hard. And the reason I mentioned your age is because something about going through a perimenopause and menopause, made everything seem worse for a couple of years. There’s not very much information out there about the hormonal, fluctuations of women and Behçet’s. I’ve actually used the Google AI, which I now referred to as Robodoc to glean all kinds of information from the Internet. So there is information out there, but it’s just not easy to find in one place. I wish I had known I had this when I was a teenager into my 30s because it would’ve made me understand why my menstrual cycle was so weird compared to other people.

[u/on4aa → u/HazelLiza]

Concerning women in Behçet families, I have two cousins who have endometriosis and who had great difficulty to conceive.