I'm new to the forum, this is my first post but have been looking through the forum for a few months now and found the advice and support given here really helpful.
I'm 28 and have recently been diagnosed with Behcet's after a pretty bad flare up, DVT in my thigh and uveitis in both eyes, but have had some of the chronic symptoms, ulcers especially, since teenage years. Before my DVT I was very active, and did a lot of combat sports and martial arts. I had to stop these for three months whilst on the apixaban blood thinners they gave me, plus the flare up had me pretty much knocked for ten for a lot of this time.
I have now stopped my blood thinners, the flare up seems under control (eyes are fine again), and I feel like my old self again. However my Rheumatologist has started me on a low dose of azathioprine and colchicine to hopefully prevent further flare ups.
I'm itching to get back into my old routine and hobbies but am also worried that either
a- over exerting myself physically will bring on another flare up
or b- It's just going to just keep making me sick now my immune system is supressed. I used do Brazilian Jiu Jitsu (hence the name) which involves a lot of close contact with lots of other people.
Anyway I was just wondering if anyone had any advice/ similar experiences of trying to continue any sort of physically exerting/group sports, with Behcet's and how it worked (or didn't) for them?
P.S. on a totally unrelated note, my Ophthalmologist is extremely pessimistic about my diagnosis. Despite the fact that my eyes have been inflammation free now for over a month she told me this week that my eyesight will almost certainly deteriorate and I will almost certainly need stronger drugs in the future. She said that Behcet's in the eyes is degenerative and very aggressive. Is this everyone's experience once they have Behcet's with Uveitis?
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Jojitsu
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In answer to your sports question, I had Bechets for all my life and I am very active, I would add a sports physiotherapist to your team who will be able to get you fighting fit and healthy in no time, what's great with mine is that they are able to warn me when I need to slow down as I'm always pushing myself, keeping strong in non flare times and they can concentrate on areas of flares.
I had a very active life when Azathioprine controlled by Behçet’s for a number of years - trekked the Grand Canyon, walked half marathons, swam miles and was exposed to all the bugs that kids can have like chickenpox etc in busy playgroups. I still had flare ups, including uveitis, but they responded to a burst of prednisolone, so I would say restart exercise that you love and listen to your body. Our daughter was diagnosed aged 4 and is on colchicine and we were told to stop her gymnastics and swimming when ulcers appear so I guess similar advice may work for you. Rest when your body tells you to. Exercise is so good for your mind that to stop it all or fear it would be such a shame
Uveitis: I have had it since 2007. Reacted well to steroids, but weaned off ASAP due to harmful side effects. Immurek for a period. No drugs for a few months. Wham - uveitis flare up again! Humira since 2012. Till now. Ophthalmologist is optimistic.
Exercise: Same trepidations as yours. Wary of flare ups. Indescribable fatigue on some days. But do try anyway. I occasionally manage to have prolonged periods of being able to exercise. Rest when the body tells you to. Sad to say, but the flares will come, one day. Be ready, accept it and rest. Then go back to the exercise. Who knows - the next ‘up cycle’ could last a very long time.
Most of all, avoid stressing up! Stressors will always be around us - but it is up to us to not be stressed up.
Hi, I have lived with Bechets now for 19 years. I have gone through periods where it was difficult to exercise. However exercise is what keeps me motivated. But what I in your Dr's word's of concern is something that he might not have put into words. Contact sport bring the risk of hemotoma. The following is quoted text to give you an idea of what happens in your muscle for instance: "Myositis ossificans is a calcification within the muscle belly that occurs as a result of a severe or repetitive contusion to the same muscle area. Severe or repetitive trauma produces internal hemorrhage and muscle hematoma. Tissue necrosis occurs resulting in the formation of fibrotic scar tissue." So start with a personal trainer that has experience in treating patients with Auto Immune deficiencies, or a Physio for that matter. You can push your own boundaries if you feel you have the best back up team available so that you can ask them questions the moment a problem arises too.
Exercising is good but Don’t over stress your body and keep warm at all times. Have a regular dose of multivitamins, particularly. vitamin B12, which you can get on prescription from your doctor. A healthy vegetarian diet is also very helpful. Avoid eating too much beans of all kind especially those with high content of protein.
Never give up. Keep fighting against your illness and you will win .
I was diagnosed with Behcets back in 1989 and at the time I was suffering with severe Uveitis in both eyes (injections needed in both eyes). I have been taking Azathioprine since 1991. Since before then I have been playing Hockey and squash and was playing for our 1st team in 2000-2006. I also play golf and used to play cricket as well.
My eyes have cleared up entirely but I gave up squash when the uveitis caused problems with my depth of vision and I kept running into the walls of the court and my golf is very up and down but who’s isn’t. I get tired and at times my joints ache but I have always tried to ignore that and enjoy just being on the pitch or course.
I am now considerably heavier than I used to be but I still enjoy my sport.
For what it’s worth, my advice is just go for it. Ignore the fact that you are ill when possible and just enjoy the sports you love whilst doing the best you can.
Dang that opthamologist was depressive. Every behcets patient is different is all I can say. My 27 yr old son has behects. He is more active now than anytime since childhood. He is bad off but was worse off. He now is able to walk a lot on the treadmill, walk the dog take the girls to the bus stop and back etc. Keep in mind that was bedridden now can do all that. What changed for him was to go on the all beef diet. He was bedridden (not exaggerating) to doing all that plus go on outings with the family. Of course he wants a donut etc but his body is "wreaked" afterwards for at least a week. Read up on the all beef diet and see if it is for you. My 30 yr old son who is not sick went on it first. Now he realises (and I can see too) how other food beside beef makes him sick like so tired he has to go to bed sick. It seems like a sugar problem (like diabetes) to me but it is not that is weird. He has been able to add chicken beans and rice without an issue. My bexhets son cant add that stuff. They have been on this since January trial and error. As far as exercise bringing on a flare is hit or miss. Hope this helps
Hey folks, thanks for all the responses they have been really helpful. I decided to give it a go and started back last Friday. Felt really good to be back on the mats, and my body seems to have recovered fine from the session without any looming flare ups, so I'm going to start up again and see how it goes, will keep use all updated.
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