Hi all new poster here, currently being assessed by a Specialist at James Cook Hospital who is leaning towards BD.
I currently have really bad ulceration on my lips, gums, tongue and the inside of my mouth. I also have itchy 'spots' on each elbow as well as down my legs and feet. Oh yeah and my 'bits' are currently blood red.
Have been having flare-ups for 4 years now. I have lost 5 jobs during this time and a 7 year relationship. Its safe to say it has now got to the point where i'm mentally done in. I was meant to be starting a new job a week gone monday, and you guessed it, 2 days before i was meant to start and my mouth explodes with ulcers.
Anyway i'll get to the point. 3 month ago i had a flare up, at the time i was seeing an oral specialist who prescribed me Fluconazole ( An oral tablet for oral fungal infections) Within hours of taking my 1st tablet half my ulcers were gone, a few days later they all were. It was the 1st time in 8 month i had no ulcers.
This lasted for 3 month before i had this flare up. The Fluconazole has had absolutely no effect. I have now reluctantly started back on the Prednisolone (I'd happily never take them again).
I guess i'm looking to see if this is common...has anyone on here had a similar situation?
Also, generally i have found that periods of high stress, or lack of sleep along with a minor illness such as a cold or even just a cut can cause a flare up. They normally last 3-6 weeks.
Sorry for the essay just looking for a bit advice. Doctor is definitely leaning towards Behcets and i guess whats bothering me the most is it will confirm (like the last 4 years) that i will pretty much have to give up on a career.
Thanks for reading the essay ha.
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scottyftm
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For me yeast/thrush ran hand in hand with my BD. Did the candida diet for 9 months and honestly that was the start of me living my life again and having energy again. Before the diet change, I was on fluconazole 200mg daily for months, clotrimazole lozenges... ultimately as a last resort turned homeopathic with gentian violet which then gave me throat ulcers on top of it. Diet change along with starting probiotics (nexabiotic 23 and acidophilus 2Bill CFU both on amazon for cheap) were the only things that gave me my life back.
Colcrys is fantastic for ulcers, start on half dose as it wreaks havoc on your stomach. Clean your diet up. I really cant stress this enough. Everyone says the same old bullshit- "I dont eat that bad...." CHANGE IT. There are plenty of posters here, myself included, that swear by a SUGARFREE, organic/non processed diet. MEAT, FATS, VEGGIES. Meal prep it if you have to. Cut breads and pastas, sodas cookies.
As for sleep and stress- DING DING DING. You've found it. Sleep is critical. Actual sleep, not laying down on phone or watching TV. SHUT EYE. For about a year and a half I went to work (did 1/4 of my job per se via the bosses during my diagnosis of "WHAT IS WRONG WITH ME") but came right home and slept until work the next day. It will get better the more you sleep and the better you eat.
Stay off prednisone/solone. It's a band aid. Get sleep. Eat meat, fats, and veggies. Seriously.
Good luck boop- and keep us posted. We are here for you!
Hi mate thanks for the reply. Yes, after my last 2 flare ups i'm now convinced i know what the triggers are. Anxiety, stress and lack of sleep are huge triggers. Combine any one of these with a cut lip or a cold and it's a foregone conclusion...I'm spending the next few weeks in bed.
In terms of diet, i like to go to the gym and do weights, trying to bulk up. Tend to focus on a mainly Carbohydrate diet. Looks like i'll have to change that and just do it the healthy way. So your advice R.E diet is: more varied, meats and veg. Fresh organic food. Cut out the sugar (might as well bury me now )
Its a shame as i have had sleep problems for a while. I have obstructive sleep apnea which is where you stop breathing in your sleep. As you can imagine this means i'm knackered 99% of the time...and i wish i could control my stress.
My 1st ever instance of 'BD' came after about 6 month of hammering the gym and a high carb diet. Think i went from 11 1/2 stone to 14 stone. The summer shutdown came at work, i partied for 2 weeks. My life has pretty much been a write off ever since.
Do you find the symptoms get better over time? As my first few flare ups were unbearable, have been hospitalized twice as i was struggling to breath due to the ulcers in my throat. Both on Christmas day as well, in consecutive years. Hence the crippling depression and anxiety.
Yeah, switch your focus to protein and veggies and fats. I also weight train heavy and have been doing great since cutting carbs out. My carb up foods on training days consist of little bit (and i mean little...like 50-100grams or so) of whole grain brown rice (uncle bens microwaveable) or black beans... in addition to my protein and vegetable. Just enough to boost my workout.
as for flare duration and intensity, It has pretty much been horrible since my first flare at 17-18 years old (29 now). My final foot almost to the grave IMO, was when i was 25 and my body just shut down. I get meningitis every time, so that plus sepsis and of course the typical joint/ ulcers and skin afflictions. During the first 3 weeks of the "ultimate shut down" i had lost over 20 lbs which, on a 5'2 framed female, is A LOT. Also had thrush before during and after. Took me a year and half to get to a semi normal. I mean fatigue was unbearable. But i just slept, cut the bullshit. Ate my best....had to let my body heal you know?
Now when i have flares, they are SO SMALL, very controllable... its an ulcer or two, its minor joint pain. I assess my situation-What have I been OVERdoing? Did i sleep well the last few nights? You need to handle your sleep apnea. Get the machine. If you need to lose weight, going low carb will certainly drop you quickly. Sleep is really important. I can not stress that enough along with diet.
But, my flares these days are NOTHING like I used to experience. My Doctor and I both think its the diet, stress management, and weight training (didnt start that till 2 years ago and have had my ups and downs trust me) that is managing my BD so well. Also because the second I eat sugar, i get ulcers within hours, extreme joint pain, etc etc etc so *uck that. Steak please.
Oh also- I had my dr give me ativan for my anxiety. Really helped on the paranoia days of "will i get sick?" I still get it prescribed and use it less and less than I used to. Just having it around helps me calm down knowing I have an option. Stress and anxiety will most definitely send you into a flare- so start cutting that out! If you feel you are explaining your condition TOO much to "friends"- cut them out. MY friends understand when i do not go to things. Even though I am very healthy now, I still pace myself and keep a very open schedule. I dont obligate myself to a lot of social events. I make sure I get good sleep each night. I only do one activity a day on the weekends. I allow for naps and down time. Its just who we are. Were not freight trains for gods sake. Try working on a mantra, Ive had many during my flares, and just in general- it centers the mind and brings calmness. During my worst flare my mantra was "This is temporary." TO control my little bouts of anxiety now, I say "it's a really nice day today." LOL it helps me stay in the moment, I look around, trying to immerse myself in my surroundings like the trees or sun. Whatever works for you, do it.
Remember: to live in the past is depression, to live in the future is anxiety, and to stay in the present is peace. You got this. You wont feel this way forever. It's one day at a time. xoxo
Hi. You definitely don't need to give up on having a career! What you need to do is give up dairy milk and cheese, bread, tomatoes and any other foods you can link to when your ulcers flare. I have discovered that dairy and the preservatives in various foods and drink cause ulcers and skin flares. I had to stop drinking red wine😟!
Have a go at keeping a food and symptom diary to see if you discover what triggers yours.
Everyone will tell you stress makes it worse but I have a very responsible job and im not convinced it makes much difference. So do whatever job you wish sweetheart and don't let the bloody behcets win!
Did you ever get an answer/ solution to your itchy elbows, I have started with an itchy left elbow and spots there too, I have a few itchy spots on my left thigh too, at the moment nobody seems to know what these are...
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