I've been having flare-ups of mouth ulcers for over a year and recently this weekend it has gotten bad, where the entire of my inner lips are covered in ulcers, including some on my tongue and inner cheeks.
Additionally, often when I walk outside my eyes begin tearing up uncontrollably for about 5-10 min and then it stops. My arms sometimes get red spots ranging from tiny, to large and painful which I initially believed to be from puberty because it's usual to get acne but I don't know anymore. My tongue is covered in something yellow also (I got told it's oral thrush but anti-fungal medicine didn't help) and I've been having problems with defecation particularily a hemmorroid type of feeling but again, I don't know what it is.
I've been incredibly fatigued over the past year and I've been to numerous GP appointments and doctors. First I got given the antibiotic Penicillin and that didn't help at all. Then I was incorrectly told I had herpes (even though I never engaged in sex / kissing at that time, and the ulcers were never on the outside of my lips). I went to A&E where I got told the same thing and was given an anti-viral drug. At that point I had a remission during the summer, but once I started my school semester the ulcers came back. I've constantly had 2 or 3 in my mouth.
Recently I've been to the GP 3 more times about it and I've been given the same drug twice, some sort of steroid, it did not help. I've had blood tests and faeces test but according to my GP, there showed up no problem.
Last appointment was 2 days ago. I got told there isn't any treatment for me, just pain killers. She gave me a strong gel to numb the pain and that's it. I feel so unbelivably stressed and I don't know what to do. I'm going to see a private doctor this saturday. Could I have behcet? or anything similar? please I just wanna know what is happening to my body. It's beginning to affect my life.
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cubm
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You poor thing, it sounds like behcets, you need to see a rheumatologist who will formally diagnose you and get you on appropriate treatment. Quite a few autoimmune conditions cause ulcers and your symptoms but a good rhuemy will work it out. Google your local rheumatology teams and find a good one and ask to be referred there.
In the mean time Your doctor might be able to prescribe colchicine to help with the ulcers, I have had barely any since being on this.
I hate to sound like a hippy but be kind to yourself, autoimmune conditions worsen with stress, they are complex and take a long time to diagnose and can take just as long to work out a treatment plan for but you will get there in the end and will feel better. Good luck!
oooh honey- you sound just like me when I was your age. I am 31 F now. I had thrush from a little before your age to about 25 years old. I dont come across a lot with thursh- so ill give my two cents further down.
first- please remember that this wont be forever, okay? things WILL get better.
second- when you go to private doctor: have them test you for crohns, ulcerative colitis, vitamin b12 levels, vitamin d levels, crp, sed rate. Immunogobulins A, M, and G. They can also test you for HLA-B51, which doesnt always come back positive for behcets people (mine didnt) but it can help narrow into a niche.
third- I will list below what you can do for YOURSELF. I want to preface this comment by saying, yes this whole thing isnt fair. I too, felt terrified, angry, and sad because I was missing out on all the fun activities that my friends got to do. I was too tired, too sore, too many ulcers to have fun. So I stayed in and slept.
Here's what I learned a little too late, (but better late than never)- and it TURNED MY LIFE AROUND AT 25.
The thrush is a problem. A huge problem. Turns out I ended up becoming sucrose intolerant from 17 and it got worse and worse and worse over the years. The sugars ended up inflaming me and making every thing worse. It took me almost 10 years to figure this out.
This is the most important thing. Once i fixed the thrush- everything else calmed down.
It doesnt matter which disease you have- whether its behcets, or some other autoimmune disease- it all works off one basic principal- INFLAMMATION. Your ulcers? Inflamed tissue. Your poop problems? Inflamed bowels and lining. Stomach too. Hurty joints? Ding ding- inflammation.
What causes inflammation?
Well, stress for one. HA HA. Fun little cycle. Dont get stressed, because it will cause inflammation. Too late, Im stressed- now Im inflamed.
Secondly, overuse/overworking. The whole "push yourself" concept. Overdoing it physically (this can blend into overdoing it mentally and then we come back to stress). Not getting enough rest essentially. And thirdly, Diet. Two points I want to make here: 1- sugar is inflammatory. Google it for yourself. It is what it is. Even "natural" sugars like fruit can be "bad" sometimes depending on how inflamed your body is (Ill get to fruits in a second). 2- Candida, aka Thrush- thrives on sugar.
So heres the simple deal- (a long winded way back to point three)-
1. drink water. only water. And a lot of it- aim for 2-3 liters a day.
2. Cut all sugar. Even fruits for right now. No processed foods. No carbs. Think meat, fish, fats, veggies are okay (no carrots/beets/parsnips/potatoes/def no corn).
3. Get all the sleep. not play on phone. Not watch tv. Go to school, come home and sleep.
More details about the diet. I did the candida diet (google it) it is essentially what I posted above. It was hard, Im not gonna lie. But i did all the antifungals- fluconazole, nystatin, clotrimazole lozenges. nothing worked. So i ended up going homeopathic and used Genitian violet (you can buy at pharmacy) and then using a few probiotics and the candida diet. For the first ten days I didnt know what to eat so I ate chicken, onions and green peppers. A lot of "normal foods" are off the table. But the more I learned about what was sugarfree and low carb- it ended up not being so hard. It's just not knowing and switching your tastebuds over. I did it religiously for 10 months. I ended up switching to a keto/low carb way of eating and Ive never looked back (find me on IG @bitterbiologist). I felt SO GOOD at then end of those ten days. I was starting to heal. My stomach calmed down. Ulcers started healing. Joints weren't hurting as much. I didnt fart for almost 2 weeks. No bloat. It was nuts. I was starting to have energy again too.
links to probiotics (I never stopped probiotics either):
you owe it to yourself to try, there is no magic pill babe. Im here for any other info and foods to try and eat. I can also help go over blood work questions if you need it. (I am a scientist in RL :P)
PS: Herpes diagnosis. HA, they said that for me too. Many Many times. Be your own advocate. Stand up for yourself. It's hard- but no one else can for you. Seek second opinions.
Oh my god thank you so much for all of this information. For a second I found it hard to believe all that text is for me, considering all the ambiguity and neglection I've received from GPs and doctors. But wow, I'm overwhelmed. Thank you. I'm going to start researching these diets and sugary foods. Seems like my love for chocolate and other sugary things finally hit me in the face.
Damn. But perhaps I see a good outcome in this where I begin looking after my body properly. I've always been sort of uncaring for it. Bad mental issues but also my intake of unhealthy food and drinks. You see, I sort of thought, "well I don't do drugs or drink like other kids so I'll be fine" hahah. It's because I'm quite skinny, and never gained that much weight for the past 5 years. (I'm 65kg male)
But yes, thank you again. Hopefully when I get myself in order and get diagnosed I can report back. But really, I can't say it enough. That was the most useful information I've gotten on what I can do for the past year. Thank u!!
Can I ask why no carrots, beets, parsnips, potatoes and why definitely no corn? I’m assuming it is because of the sugar in them? Interesting when I was in hospital recently I was on a low GI diabetic diet. My mouth broke out quite badly with ulcers and I was blaming the acidy fruits in the fruit salad. (Maybe it was the sugar in the fruits)? For a nice Private Hospital that was my only complaint - if you were on a special diet the menu was very repetitive. PS. It was more good luck than good management that I had private health insurance. If I meet him again I would like to thank one very cranky neurosurgeon who demanded that I go out then and there and take out at least a minimum level of insurance. I didn’t use it for years and came close to dropping out so many times and now it was proved it’s worth tenfold!!!
Carrots, beets, parsnips, and corn are very high in sucrose. potatoes are to be avoided if watching carbs (not high in sugar, but starch).
ive gotten so sensitive that if i consume a small bit of sucrose (accidentally), i will get oral ulcers within a few hours, (along with immediate stomach distress).
My sister has behcet's and was wrongfully diagnosed for almost 2yrs. She had multiple surgery's down below to remove ulcers and was told the same thing she had herpes and she was only 8 at the time. Finally on another hospital stay they did a biopsy and it came back behcet's. She gets very bad flare-ups on her private parts, and her mouth, she is always weak wants to sleep all the time, pain throughout her body, multiple stomach problems, weight loss, and now recently the ulcers are now starting on her face into her scale kinda like acne and her eyes are starting to become irritated more. It has not been an easy road for her lots of pain and depression because she feels there is no help. The sad part no doctor in our state seems to be educated on Behcet's or know exactly how to treat for it. She has been proscribed to many different meds over the years (she is now 21) and nothing seems to really help. I came across here recently a Dr called Yazici in New York and was labeled the "God" of behcet's medicine. He has you tube videos you can print out to give your Dr to help treat you better. Dr. Yazici is our next step in helping her finding the proper treatment she needs. Best of luck to you and finding relief.
My daughter was 19 when she first got Ill, she was rushed in with appendicitis that was the start of a over four year battle to get correct treatment.
She had huge problems with pain and her bowels, she has been prepped for theatre twice to have her bowel removed as they thought it was going to perforate.
She is on massive doses of steroids, which are beginning to affect her body so she has to lower them but every time she gets down to 20mg she has a massive flare.
Coe Birmingham have on Friday agreed to her going on biologics. We are praying this will make her a lot better it’s been a very long four years, she has had every test going in that time.
My daughter has the best specialist he has I have no doubt saved her, it’s him who has not given up, and has then told the COE she needed to go on the biologics. He is moving to Oxford Hospital after Xmas, my daughter is moving to stay with him if anyone is in that area or near enough I could not recommend him more. His name is Dr Dubey he’s been remarkable, even emailed back at midnight before now.
It’s a very long journey, don’t get too down, listen to your body and rest when it tells you to. Good luck.
Oh gosh this is EXACTLY the problem I had several years ago! I really do sympathize with you. I recently found out that hormones in certain types of contraceptive pill can affect Bechet sufferers. So if you're on a pill, Check with your gp. I can't offer any other advice, it is horrible but you will get through it. Hope this helps x
There is a lotion to use in the mouth called SM33. Buy the lotion, not the gel (it comes in both forms). I have found it is the best thing for curing oral ulcers. I usually use it at night and even with a bad attack, it is under control in a couple of days. Lesley
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