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.

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Hi well nice to meet another longtimer.....lol 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.

Billi

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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-

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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.

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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.

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

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