Behcet's syndrome: Hi all I have been dignosed... - Behçet's UK

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Behcet's syndrome

pete11 profile image
7 Replies

Hi all

I have been dignosed with bechets yesterday which was a bit off a shock. Mouth ulcers genital ulcers and really bad joint pain with my hands killing me so much

I can't some times pick up a cup because of the crippling pain in fingers and wrist. Also has any one on this forum had this eye proplems in the picture it's swollen and sore.

Thanks

Pete

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pete11 profile image
pete11
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7 Replies
B130859 profile image
B130859

Ouch that looks sore I've had redness around my eye at the top and eye ulcers floaters etc as for the joint pain it seems every bone in my body is painful took a bad fall yesterday so I'm bruised all over but I think the cold weather has made it worse your eyes look to be some type of allergy to me hope you get it sorted soon x

pete11 profile image
pete11 in reply to B130859

Hi sorry to here you fell I fell the

other day at my kids fun fair fireworks I felt so sorry for the kids see there dad fall over and finding it hard to get up in front off all there friends oldest son is 12 so must of made him feel uncomfortable around is friends. As for the eye it was a skin ulcer at the bottom I get this swelling and bruised like eye quite often as well as other skin ulcers and problems.

rooser1 profile image
rooser1

No eye issues like that but I hear you with the joint pain. I was the same. Are you on medication? colcrys for the ulcers. nabumetone worked wonders for my arthritis. Rest is very important. Actual sleep- not lay down and play on phone/watch movies-is critical. Get on a good probiotic- I like nexabiotic (Amazon), cut all sugar/carbs aka pasta and bread (no cheats) and get your butt on an anti inflammatory diet. It took a while, I'd say 3 weeks to 3 months for noticeable changes: about 1 year to 1.5 year to get back up to a normal. 4 years to get where I am today. Diet change was the key factor of me getting better. but ultimately was on 15 diff pills a day and now only half dose of

colcrys. I weight train now and have energy. You can beat this and get healthy. rest up, eat well and cut all unnecessary stress.

feel better soon.

ps please look at my profile posts to see what I responded to others in depth.

sam0511 profile image
sam0511

Sorry to hear about this. My advise is that if it is your actual eye - sore, red, or any change in your vision, get straight to the hospital eye unit. Don't take next week for an answer, get seen immediately. I have had the same symptoms, but unfortunately some delay, because I hadn't been diagnosed at this point, I have lost some sight in one eye. Please go asap. Good luck, let us know how you get on.

distanttree profile image
distanttree

Try a new diet.

Eat boiled rice pots veg

Avoid dairy it causes inflammation.

Avoid caffien it causes the mouth and bowels to erupt.

Find a diet you can subsist on.

Then include one food a a time.

It seems tough...the alternative ...?

Once this is done .

You won't feel a victim of your body.

You can do it

trina35 profile image
trina35

I've also been having problems with my hands and wrists does anybody know what if anything can be done about this as I'm finding it really hard to do the everyday things at the moment many thank's

pete11 profile image
pete11

Hi

My hands are in terible amounts of pain and I can understand that you can't do everyday things. My wife is about to give birth to our little girl and I am a little worried about doing the little things when I have this pain. I also havea new pain electric like pains in my feet and knees. Really painful brings tears to my eyes. The joys of bechets. Starting new treatments this week just awaiting my TTG blood tests. Hopefully live will seem a little better soon can take upto 6 months to start working

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