Hi just signed up after reading some of the posts feeling a bit low and frustrated! I am newly diagnosed behcets patient and don't feel like I am getting anywhere!
You are not alone on here! Everyone is so helpful, especially when it comes to meds and support? Where are you have you? Have you been referred to a bechets centre of excellence if you're in the UK? Or have a good immunologist. Have you been put on any meds?
We all suffer with this is many different ways, with different symptoms. The best thing to do is relax and rest when you can, especially when having a flare up! It's hard, I have 2 kids and work but have an amazingly supportive boss/company.
If any of us can give you advice or tips we will do as we are all going through it.
Take care and look after yourself!
Hiya thank you so much for replying! I live in the uk and have been seen by the rheumatologist and referred to maxilla facial regarding the mouth ulcers ! I am on colchicine and just finished a course of prednisolone , I have had a 3 month course of vit b12 injections and steroid injections in my hips! I am 40 always been quite healthy and have recently gone through a horrendous divorce ! I have 2 children and 1 has severe learning disabilities and psychosis ! I am working and I feel that a lot of my symptoms were passed off as stress . When my gp referred me to the rheumatologist and they mentioned bd I was a bit relieved I think that it wasn't just in my mind! The mouth ulcers were the worst and have suffered constantly since May 2015 ! Omg! I feel like a right moaner!! Lol! 😊X
Hi It's good to have a moan every so often, does help and we do understand how you are feeling. I had my first flare up with BD when I was 14 that was 40 years ago. I have only been diagnosed in the last 5 years. Try using a natural toothpaste Forever Bright Aloe Vera is really good (without Floride) this has helped so much. My main symptom was ulcers 25/30 at a time but now I get them very rarely. I am not on any medication have had steroids when needed but I try and control with what I eat and drink organic food which we grow no coffee as that effects my whole system, alcohol very rarely, many other things but you learn over time what has an adverse effect and you then avoid it. I also have had really bad bone pain deep and very painful. Just had vitamin D blood test and I am very deficient so hopefully that will get sorted in the next few days and some of the pain will go away. I have very bad sleep patterns. One of the best pieces of advice was sleep when your body needs it, if you can get that right then things do seem to feel better. I do hope that 2016 will give you health and happiness. Biddy xx
When I was diagnosed with a biopsy at North Western Hosp. I had mouth ulcers,& vaginal ulcers. But. That was 2010! 2015 I think because of my age. I have symptoms more frequent, fever, chills , ulcers, joint pain all the time! I had 4 ulcers,& the worst one I still have since 12/27/2015. I like alot of others like us are going through this too. I feel always weak, Exhausted, & didn't do anything. I cant sleep. I am up until wee early mornings. I dnt want to talk much because lately all I do is complain. Urg! I thank God I found this group of long distant friends who everyone can complain, & help eachother!
Hi thank you so much xx I can't believe I have woken up this morning feeling absolutely awful! I feel like crying! I finished a 6 week course of prednisone on weds and last night started to feel sore down below and this morning have woken up spotting blood down below where I have multiple tears and have 11 mouth ulcers!! Since New Year's Day I have the most horrendous soreness around by back and radiating across my chest which feels like sunburnt skin so can't even shower cos it hurts! And now have a presentation to do by weds and am panicking because I feel so awful! Omg rant over !! Lol! I think if I'm like this at 40 what am I going to be like when I'm 70😁!!
Hugs jo xx
You are not alone...I'm so sorry for your struggles and can totally relate. I don't have any answers for you mainly because like you as I read through all the posts and get so many differing opinions from doctors, it is so obvious that this condition impacts each individual in its own unique ways. And each of us seem to have some luck with certain meds but not always. It is a journey of trial and error. It is beyond frustrating and even within a forum like this, it can be hard to find anyone that is suffering in the same ways you are and/or responding to medication treatments in the same manner. I know I get so confused sometimes just trying to figure out what is behcet's related and what is a side effect of the meds and what might be something that is simply the result of stress/lack of sleep/anxiety. It is an absolute big hot mess. But there is always hope and you are never alone. I wish you all the best and will keep you in my prayers.
Thank you so much for replying ! I think i was having a bad day yesterday! So many people have replied and everyone has been really supportive ! I agree I think it's trial and error but I just feel so awful some days that I feel really neurotic!! Thanks jo x
Hi Jo, it's Julie here from the BSS, please email me if you would like some of our leaflets on Behcet's. It might help to show the info to work too. Let me know where in the UK you are too and I can send a link to the Behcet's Patient Centre details, if appropriate. Also we are having a Behcet's get together in the Mids / Staffs area in March, so let me know if you would like more info on this. Best wishes to you. Julie x
Are there any support groups in the Sussex area? I've just been diagnosed this week after many years!
I hope you are feeling better! I was on a real low with a bad outbreak over Christmas and new year. It's good to moan, we all have to sometimes. X
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