I was diagnosed with Behcets in 1997 after having ulcers every few months.. they gave me colchicine for a few years and everything seemed mostly under control for a long time. I had another flare up in 2007, but other than that, from time to time I'd feel a little nausea and fatigue, but it would never last long.
Now though, I'm at a stressful job living away from home and have been unhappy with where my life is at for a while.... I'm curious if the stress might bring on other Behcets symptoms. One doctor told me that it was impossible that what I'm experiencing is my Behcets because it will always show itself in the first form that it had originally come in- ulcers. But my sister, years after she was diagnosed, started showing new symptoms and her doctor had told us that Behcets takes the form of many different things so he wasn't surprised when things got a little confusing for them.
For about 8 months now, I get sick after eating. At first I tried to track which foods made me sick, but it was so random that I just never know what's going to make me nauseas. I feel extremely tired all the time and I've always had a problem with possible IBS. My gastroenterologist has tested me for many things that have turned out normal... I don't have stomach ulcers, Celiac Disease, a paralyzed stomach, and my gallbladder is fine. It's getting frustrating because now I feel like he's starting to give up on diagnosing me and is just giving me pills for acid reflux and nausea and hoping it'll help.
Does anyone think that the environment I'm in might be causing it? My friend was thinking maybe my body's been in fight or flight mode for so long since I've had a rough few years that perhaps my body is responding. My family's wondering if the stress in my life has been triggering my Behcets... I've tried changing my diet and it hasn't helped much. I throw up at random times either after eating or just when I wake up some mornings. I've lost about 10 lbs from barely eating since I'm nauseas so often and don't have much of an appetite. Or I just worry about getting sick.
It's becoming extremely frustrating and I don't know what else to do. I've also had back aches and headaches. Does anyone have any suggestions?? I go a few days usually feeling okay, so then I worry that this has all been in my head, but then I get sick again and can't explain what's causing it. I'm wondering if it's just my Behcets flaring up for longer than usual.
I'm so sorry you are having such a rough time. I can understand only to well what you are going through as your complaint sounds like one I went through as well.
You stated that you don't have stomach ulcers so I will assume you had a Endoscopy(camera down your throat) to confirm that. While you had that done do you know if the Gastroenterologist tested you for Helicobacter Pylori (H-Pylori)? A lot of Behcets Survivors have been known to have had this at some point in their life. People infected with H. pylori can show no symptoms. Acute infection may appear as an acute gastritis with abdominal pain (stomach ache) or nausea. Where this develops into chronic gastritis, the symptoms, if present, are often those of non-ulcer dyspepsia: stomach pains, nausea, bloating, belching, and sometimes vomiting or black stool. The reason I ask this is because it took 2 tests for them to figure out that was what was wrong with me. Long before my Behcet's diagnoses of course....
Headaches are now one of the known symptoms of Behcet's Disease. It wasn't for the longest time. There have been a lot of Medical Journals in the past 3-4 years in regards to this symptom.
As for stress... Unfortunately your doctor us wrong! Stress is a MAJOR factor in our health. If you think of it from a healthy persons point of view, stress effects everyone. If you are going through something that is making it hard for you to sleep, eat or even concentrate and your healthy you can get through. But you add on the fact that you have mouth ulcer, joint pain, a headache and now can't sleep, eat or concentrate how well are you going to get through it? Your not! We all have to minimize our stress, its very hard to do, but for your health sake you have to.
When you are diagnosed with a chronic illness it is best if you talk to a psychiatrist. Someone that can help you deal with your emotions, grief, guilt and stress of the diagnosis. After that a good friend or someone else with the same diagnosis who can sympathize with you. I didn't go for a few years after my diagnosis, I felt like I was going to lose my mind. Doctors telling all these different things, my body telling other things, and my mind telling something completely different. All this was going on while I felt like I should be working, raising my kids, being the good wife but all I could do was lay in bed with an ice pak on my head, drink my food through a straw and cry in pain. You can't push yourself huni, you have to listen to your body. It tells you when it needs to stop! If your not happy, your stressed out, your sick and you are far from your family then listen to what your body is telling you...
If you need to talk huni, please feel free to contact me. I have been where you are! I understand!
I'm so very sorry that your Behcet's is causing you so much pain. Yes, stress causes us who suffer from this disorder to flare. The everyday stresses from our normal life can cause a Behcet's patient to get sick. Even a good event such as a wedding, vacation, birth of a child, etc. can cause us to flare. I recently went on a seven day cruise with my husband for our 40th anniversary. I've been flaring since I returned over a week ago. The warm tropical weather made me feel great while we sailed, I felt fantastic on the cruise, was well enough to attend all the shows, got off the ship at every port, and slept like a baby with minor joint pain! Since we returned I have been suffering for a week with sea legs and dizziness. My mouth ulcers are terrible, the joint pain is back in full force, I've been so fatigued I haven't even unpacked all the way yet. Just from the GOOD STRESS I'm in a full blown flare!
My Behcet's through out the years since my diagnosis, has changed many courses. Symptoms pop up out of no where. My four most severe symptoms have remained active through out most of my adult life,memory problems severe never ending mouth ulcers, chronic joint pain, and daily fatigue. Symptoms that come and go are, skin ulcers, head aches, balance issues, tingling and numbness in my legs and feet, eye inflammation, teeth issues, mini strokes and blood problems.
If you find that the stress of working causes your Behcet's to constantly flare you may have to look into applying for Social Security Disability. Do you live in the United States? After over 25 years of owning and operating a in home "Day Care" I had to give up my business because I was just too ill to continue another day. Many of us with Behcet's have been forced to end careers. I can help you with this process when the time comes for you, I know the best SSD lawyer!
God bless you, you are in my prayers today. Try to remain positive, I know this can be hard sometimes as we watch others around us that are blessed with good health. I'm here to support you. I am the President of the "American Behcet's Disease Association" and run the 1-800 # Hotline, please call me if you need to talk.
I never thought of how the stress from good things might cause it to flare up also, but that makes sense! How difficult!! I'm glad though that you were able to enjoy the cruise itself at least! I'm sorry that you've had to deal with it after though.
I was diagnosed in 6th grade with Behcet's, along with my twin sister. And my older sister was diagnosed with it also soon after us - she later got Ulcerative Colitis. The Colchicine they had us take when we first found out about Behcet's helped keep things in check though for us through high school. Although I would notice I'd get overly tired from time to time and if I didn't get enough sleep and didn't pace myself with social activities, I'd feel sick and tired. But the ulcers didn't come back till 2007. And since then I've been free of ulcers. I'm 27 years old and have been trying to figure out my life the past 4 years and have hopped from job to job, often traveling and away from home, close friends, and family... I thought finding something stable would be good, but the job I found is away from where I'd like to be, I have odd hours so it's hard to find new friends and/or spend time with them, and during work I have to be on the edge of my seat every second of each hour. All of these symptoms I've been feeling started in April or May 2012 and have been constant, so my family and I have agreed that after my body's reaction to the past 2 years out here, I need to return home and look for something different.
I looked at the doctors recommended on the American Behcet's Disease Association website and found one in my area... thankfully, they gave me an appointment for 3 days from now and I'm looking forward to talking to a doctor who is more aware of what is going on with me. The last rheumatologist I went to didn't believe me when I said I have Behcet's and dismissed my symptoms as Behcet's related, saying that the only way it'd be Behcet's again would be if it came back as ulcers. He said that Behcet's doesn't come back in different forms, which I strongly disagreed with and explained to him about my sister getting Ulcerative Colitis later in life. Since that appointment, I've been sticking with my gastroenterologist for my tests since he at least recognized the disease and had treated a few patients before for stomach ulcers (he did an endoscopy and I have no ulcers).
My Mom suggested this website since I've been feeling very alone for the past year dealing with these symptoms. My friends often tell me it's all in my head and that I'm not as sick as I say I feel, so it's been hard finding a support system... my Mom thought this would help and it has... I've been appreciating the responses people are sending. I posted on the Behcet's Syndome Society community also and have gotten replies there too. It's been comforting knowing that other people understand.
Thank you for the response! I will look up the hotline number and keep that in my phone in case I need to talk with you. And thank you for letting me know about the Social Security Disability. I do live in the United States and it's good to know that's out there. I appreciate it! I hope you start feeling better also!
Please I need more info on a lawyer!!! Please I have NO energy to even get out of bed. I have 5 children at home and trying to be a mom, wife and go back to school for nursing. Every day is a struggle for me just to get through the day. It is so hard for my family to understand.
I need the information for a SSD attorney. I live in Texas and I have 5 kids and there is no way I could work with this illness at this time. I am a nurse and want to go back to work so bad. I feel like my life is over
My personal belief is that this is caused by SIBO (small intenstinal bacterial overgrowth). I've had it and the only thing that got rid of it were taking probiotics consistently and daily for a long time. The one that helped me best was called "Ortho Biotic" by Ortho Molecular Probiotics. I think it's caused by inflammation, ulcers, yeast, etc. in the intestines, kinda the same way the mouth and genitals get irritated and susceptible to infection.
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