Behcet's Syndrome Society

Behcet's how do you cope

Good evening I have suffered from Behcet's for the last 39 years. I was diagnosed in the last 5 years. I am on no medication and I try hard to eat organic food and natural products as I find this otherwise irritates by mouth. I would like to hear from other people to see how they cope. Doctors don't understand and think it's all in your head, well it certainly isn't. I find my skin is very tender does anyone else? Love to hear from anyone who is a suffer.

5 Replies

Hi well nice to meet another lol

I have suffered for over 30 years and got a diagnosis after 12 years. Like you I hardly take any meds now and eat healthily and exercise a little everyday. For the first 10 years it was hell no nobody in 4 different countries (hubby's work) knew what was wrong therefore told it would pass. not to worry, could be worse etcetera. Eventually after 5 years in the UK a doctor believed in me, still didn't think it was Behcets but helped me anyway. After seeing at least 30 docs in varying med disciplines finally diagnosed by a group of dermatologists.

May I ask your age and whereabouts you live? You can message me privately on this site. Be interesting to chat about everything.

Wait to hear from you.



I am in the USA. So far, from what I have read on this site, European doctors don't take illness seriously, or at least really drags out the process of being diagnosed. :( I saw my Rhuematologist one month after my biggest flare ever (I was down for about 3 months) and she diagnosed me off of what I told her. My BW was a little wonky, but at the time I had no ulcers and little joint pain. Didn't hesitate to give my colcrys/prednisone for future use if needed. I also had asked for ativan at the time because this was a huge transition for me :P

I would like to say kudos on a eating well. I have learned that eating clean is the most important thing I can do to manage day to day fatigue and pain. If you haven't considered it yet, add a probiotic and coconut oil as well into the diet. HUGE difference for me- energy and stomach wise. Personally, I am allergic to sucrose... just to put that out there, cut all sources of it. I eat low sugar fruits only (berries and cherries and apple- everything else cramps/diarrhea).

I exercise almost daily- for mental relief. It is sort of "in our head" though, if your think about it. If we are okay mentally and dont over do it physically- we are going to be alright. All my flares have been because I was mentally stressed and didn't take care of how much sleep I truly needed. I also incorporate yoga once a week. You'd be surprised how great it makes you feel after!

I make lists, breathe deeply, and find a positive in everything. I cut annoying/toxic/demanding people and activities from my life. I take deep breaths and tune into nature and my surroundings. I take naps and live life at my own pace. I say "no" to overwhelming or energy draining activities without guilt. I take pride in knowing how my body works, standing up for my needs and taking my time.

stay well-


Hi. When I was diagnosed my consultant is American and she new exactly what I had, the relief I can't tell you. I have to have a consultant for each thing that is wrong with me, ulcers, joint pain, infections the list goes on but by the time I get to see anyone not the ulcers, she is fab and I get to see her once a year or if my ulcers flare up the same day. The other things 3 months waiting by that time it has gone. I now use Merc Sol for my ulcers and aloe vera toothpaste which works really well as touch wood have had no bad outbreaks for about a year now. Used to get 20/25 at a time in mouth excruciating. Your comment on sucrose is interesting as I don't eat anything with it in anymore. Also coffee gives me IBS symptoms so have stopped that, only have a small about of skimmed milk also seems like it is giving me the same affect. We grow vegetables and have our own chickens, pigs which are organic or if I have to buy food it's always organic. You are right, the less toxins you can put into your body the better for you and I fully agree. I use a natural product for all our washing as otherwise I get sores on my body. You have to have a positive outlook on life as sometimes things do get too much. I walk the dogs, look after the horses. Some mornings I don't want to get out of bed but the animals don't feed themselves. I also have a great husband who makes me laugh when I feel down. It was lovely to hear from you, thank you for taking the time out to reply really appreciated.


I have just one thing to say Korean Ginseng. Try it the only thing that has helped me so far and eating so called good healthy food helps as well.


Do you have this in liquid form, how does it come, How much do you use? Why do you think it helps?


You may also like...