behcet's and exercise

[Dundee1963]

Hi, can anyone help me on why only moderate exercise is recommended?

Thanks

[magician]

Hello. I do not know the science behind it, but when I over exert myself at the gym, I get a flare

[Dundee1963 in reply to magician]

Thanks for replying.I don't want push myself if it will end in a flare.Will speak to my Doctor for advice.

Thanks

[andreafm]

I find the swimming pool a good place to loosen stiff muscles and joints. It's non weight bearing and can tone muscles just by wading and floating around.

As long us you don't go at it too mad...it can actually be a relief to fatigue and pain. Exercise can bring on a flare and actually put you back in a recovery. Particularly with the fatigue, joint and muscle pain....then you end up not exercising at all through fear of a flare. So it really is a fine balance of little at first and very slowly build up.

I recently used our local hotel pool as I live near Heathrow Airport.....it was lovely an warm and not as intimidating as a local pool.

There is an online scheme called PayasUgym where you can purchase vouchers to use in hotels and other places. All you do is put in your postcode and up comes lots of places with gyms and pools etc. Then you choose the one you want and buy a voucher....they are all pretty cheep and save investing in a Fitness Centre which can be pretty costly.

The pool I went in had a spa and massage, restaurant as well....so it didn't feel like exercising at all.

Check it out with your Doctor first though

[Jaxxi]

Hiya! In my case I can get fairly fit, but I have to build up to it ever-so gradually, and avoid like the plague the urge to overdo it. Like the others, doing too much too soon sends me on a trip to Flaresville.

My main problem is I get fit - which takes ages cos of the baby steps - and then I get a flare and I'm back to square one in a week or so. It's like snakes and ladders! But I try not to give up as I find that if I get too deconditioned, I get very high levels of chronic fatigue.

My starter programme after a flare is 5-15 minutes of very gentle yoga stretches a day and some gentle activity - keeping moving round the house, work, garden, shops etc, every day for a week. The following week I add in one or two slightly longer walks - maybe a stroll along the river on the flat for half an hour, something like that, and add in a couple of longer yoga sessions - but not more than half an hour. By week 3 I generally feel stronger and can start 'pushing it' a bit more, with a spin on the exercise bike, a walk up the hills or some more challenging yoga poses. But it's a matter of listening to my body - as long as I do a bit every day (even during flares I try to get up off the couch and stretch a little and move around to keep things 'loose') and build up, then I am on the right track. For a while I stopped exercising as I got so disheartened with the flares undoing all the good work, but I was a lot more tired all the time. So now I try to see exercise as a healthy way of reducing the impact of the illness, rather than something I do with the aim of achieving a super-fit, toned body.

I am just coming out of a week-long flare associated with a fluey virus now - feeling very weak - so my challenge today is to do a bit of housework and see how it feels to sit on the yoga mat and do a few twists.

I joined a health spa/gym last year and it was lovely - my skin was amazing with all the saunas! - but I couldn't afford to keep it up, sadly :-(, and with time out due to flares, it wasn't worth it. But I will have a look at PayasUGym, could be the answer

[sam0511 in reply to Jaxxi]

Just been dignosed, and it helped to read your post. The fluey bit you describe is me exactly. I will take your advise and start slowly exercising. The weight gain due to steroids - have stopped me losing sight in good eye - but is getting me down now, some days cant get out of bed. Now I have a plan. Thanks.

[Dmartin138]

Shortand sweet is it takes so long to recover USUALLY and then flaring may occur. Sometimes if I know I am going to push myself I have to take a little more prednisone to make sure I won't flare up. The only thing is my bones and joints will be sore for a good week or two.

[Kaeo]

I second every word of Jaxxi. It is like snake and ladder for me too but overall it gets better over time. My optimal state inclue 3x2 hours in the gym each week. Each time I fall off the wagon from flares and other reasons, it takes me about 3 months of disciplines to get back on track. However, the first time it took me over a year of discipline and commitment to get there!

[MoniqueKahili]

Hello there,

The best I can say here is listen to your body. I’ve definitely triggered flares due to the added stress and inflammation of the style of workouts I used to do(high intensity mostly). I know better now. It’s so important to check in with your body each day, and shut down any negative talk that comes to mind if you simply don’t have the energy to put in the work you want. The most important thing is to move. Slowly and gently is sometimes all one can manage, so be it.

I’ve gone through a long process with my love of fitness and the reality of Behcets. There was a period of a few months this year where I only did yoga and walking. That’s all my body could handle after getting flares every month for about a year. Plus, I was trying to correct a hormone imbalance caused by steroids. Hormones are right again and I’ve slowly began to incorporate 2 days of weight lifting, which I missed terribly lol. I focus on strength and not muscle growth(medium heavy weight for 5-7reps x 3-4sets), as I want to avoid any extra stress. I put 2 days in between each gym day and limit the sessions to 30-40 minutes with plenty of breaks. I walk and do yoga on the other days I want to work out. I’m starting to feel stronger and my flexibility has improved drastically over this last year. Behcets has really taught me the significance of slowing down and taking the best possible care of my body.

Best wishes to you on your journey!!