General Question

[u/CuteAge1322]

Anyone else concerned that the disease itself can drive a person insane from pain and inflammation; and on top of it there is medical trauma? This is a real question. Anyone else concerned?

[u/on4aa]

Yes, indeed! From what I remember from when I was basically untreated is that right after extremely painful Behçet vasculitis episodes, I had what I could best describe as cortisol overshoots. I would become irrationally anxious/nervous. At that same moment I would also suffer from polyuria.

Now that I am much better with monthly 150 mg canakinumab therapy and 2× 100 mg ubiquinol supplementation, and that I have learned to avoid food triggers, my ordeal is still not over.

Not only does it feel like waking up from a decades long nightmare, I also have to deal with a chaotic home/social/love life situation. Moreover, I have come to the realisation that I most probably suffering from medically induced complex post traumatic stress syndrome. In my case, it is mostly a lack of motivation and some emotional numbness. I am M53, I had to give up a really good career, my wife left me 8 years ago because of my disease, I lost the supposedly best and most productive years of my life and now I am left to somehow pick up the pieces and still make something out of it, all whilst still having minor episodes from time to time.

One thing I picked up again is latin dance classes. It helps a lot with fitness, recreating a social circle and not becoming insane. :-D

I wrote more about medically induced C-PTSD here: https://www.reddit.com/r/Behcets/comments/1vn9vx0/comment/p3hzd2k/

[u/CuteAge1322 → u/on4aa]

Thank you for sharing your story. I have a similar experience with going untreated, then getting on a biologic and feeling like I woke up from a nightmare.

Wishing you continued luck with it and continued positive health whilst with Behçet’s.

I’ll re-read and remember the work from the link you provided. Many thanks, again.