Length of Behcet's flare up?

[Psalm116]

How long can a Behcet's flare-up last and is there anything I can do to help get over it sooner? I'm in the middle of a flare-up right now and I think it started because I started exercising. From what I understand, I may have overdone it and stressed my body too much But, I need to exercise so I need to figure out how to do that without causing stress to my body.

[lesleyg]

Hi, just wanted to comment on your theory of over exercising. I believe a flare was set off due to a very young physiotherapist insisting I do a vigorous regime in hospital (I ended up refusing to go on but the damage was done). I have read since that approximately 20 minutes a day is recommended for Behçet’s patients, which seems quite sensible. From my understanding flares are very individual in length, lasting from a few weeks to over a year. In my case that seems to be the case.

Years ago a specialist I worked for said it was important to listen to your body. At the moment if you are in a flare you need to rest then slowly get back into exercise. Hope that helps, as they say these days - this advice is in my humble opinion- Cheers Lesley

[Icefire]

Hi there, I don't have the answer but I suspect I have had Behcets for 25 years. Still awaiting confirmation but Rhuematologist suspected last flair 4 years ago in pregnancy.

I was poorly and hospitalised with it at 14. But in my 20s I managed to train up to run a marathon. I just started really gently with 4 mins running interspersed with walking for the first week and not much more thr following week.

Recently I started the couch to 5k but it was too much and think it sent me into my most recent flare. I can function again now, look after my family and work part time but am still tired by 8pm! The worst of the symptoms lasted about a month but that is the worst flare I have had since age 14. Others have lasted ~two weeks.

Trouble is my symptoms have progressed from just ulcers and fatigue to include Erythema nodosom and uveitis so I don't really know either!!

I plan to start the same 1 min running plan 4 times and build up really slowly. It felt so good to run the two weeks before burnout!!

There was an interesting post about delayed fatigue on here somewhere. I've learnt that we pay for out actions a few days later so pacing, rest inbetween and listening to your body is key.

Good luck.

[Icefire in reply to Icefire]

Sorry I was rushed in writing that. I think it was Lesley above who shared some info on delayed fatigue?! It was very handy thank you. Rest, proper food, methylfolate and magnesium are my go tos in a flare.

[Psalm116]

Thank you all for your responses. It's very encouraging and helpful.

[Lizzie46]

it is a great site for support and v comforting to share with others. i find pacing myself is the only answer. never try to over achieve ...plod and you will get there in the end. exercise is really important generally but we have reign it in sometimes sadly. acceptance! liz

[muttiof3]

I have found that I can easily overdo it with exercise. Someone here mentioned listening to your body. That is so important! One thing that I’ve noticed that can also cause a flare for me is sugar. My body just doesn’t like it anymore and eating things with sugar (or certain alcohols) means I will have pain at night. Eating correctly and pacing myself has become the goal I strive towards.

Without going into too much detail, I firmly believe that my Behcets presented itself because I burned the candle at both ends for at least seven years (pregnant and raising children while trying to be perfect, etc). My body told me in many ways and multiple times to slow down and I never listened. So my body decided it was going to make me listen and hit me with the granddaddy of all flares. With my first flare, I met all of the primary and secondary criteria for Behcets except for one of the primary criteria. It took a week before I could even walk without hurting and after that I had symptoms for a long time.

When you have a flair it is so important to rest. I have gotten to the point where if I have a flare or I feel a flare coming on I rest. The sooner I start doing nothing, the sooner I’ll get better. Fortunately, I’m in a position to be able to do that.

When I was younger, I was an athlete and running a mile was just part of my warm up before exercising or doing whatever sport I was doing that day…I felt like such a wimp when I started working with a physical therapist and my first goal was something like walking four minutes at a moderate pace and work up from there. No pushing through the pain etc. I had to learn to accept my body for where it was at, not for what I “knew” it could do.

I have found yoga to be wonderful for me. I even take a power yoga class that’s not called that because the instructor doesn’t want to scare people away. I don’t know if you’ve ever lifted weights but if you have, have you noticed that the slower you lift the harder it is? If you rush through it it tends to be a breeze. Well a lot of power yoga classes seem to go too fast for me. However, the yoga instructor I’ve been going to has slowed way down and it’s much harder of a work out when it’s slow and you are more able to feel what your body is doing and adjust. The nice thing about yoga is that you know what you are capable of. Don’t worry about what other people are doing on the mats next to you, you on your mat is all that matters. Work on correct form even if it means not touching your toes…that will come, or it won’t but that isn’t what matters. What matters is listening to your body and doing what it tells you while gently pushing it to keep going. Love it😁

If you can’t find a yoga instructor that has slowed things down, try to find a Gentle Restorative Yoga or even a Chair Yoga class. Tai Chi has been good for me too. I’ve taken my classes at the YMCA but I know there are classes on YouTube also. Oh, I also like Yoga Download. Groupon, in the past and I think even now, has a special that’s a year of classes with Yoga Download for $15. That’s 90 or 95% off their regular price. You can download as many classes as you want and you get to keep them. It’s a little overwhelming because they offer so much but just start with a beginner class and go from there.

[Psalm116 in reply to muttiof3]

Thank you so much for all your great information. Learning to be patient with myself hasn't been easy. Accepting this Behcet's and learning as I walk thru it has been humbling as I always pushed myself no matter what I did.

Thanks again & you take care of yourself

😊