New to this

Hello everyone,

I was just diagnosed in October. I have been quite sick for the last few months and was so happy to find this blog and read through the posts about people's day to day experiences with Behcet's. I find I am experiencing a lot of things that the Doctors have failed to warn me about, such as the pain and fatigue and the aching, the stiff neck, the sweats. Reading that others are experiencing much of the same helps me feel less alone. While my family and friends have been supportive i just feel like no one can quite "get it" unless they've actually experienced it. I'm not sure i can describe to a non-sufferer the true degree to which this disease has compromised my body and my life. it helps to know others are going through the same thing.

18 Replies

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  • Welcome Kat, glad you found us, we are all very supportive to one another and help and understanding is only a click away, a lot of people on here have helped me with my down days even-though its not me who suffers but my daughter but that doesn't mean i don't need help and support through the rough times and you can rest assured you will find it here. Take care. x

  • Thank you for the welcoming words!

    I'm so sorry that your daughter has to suffer with Behcet's. How old is she? As a mom I can imagine how difficult it must be!

    Kat

  • Hello Kat and welcome to the wonderful world of Behcet's! Tis a pig ain't it?

    Each and every one of us will have experienced something of what you are feeling now. Unfortunately, there seems to be no rhyme or reason about who gets what symptoms or why they get them but many of us felt an immense sense of relief to find we weren't the only ones.

    For me it was the sweats - I've had them for a good few years now (Behcets diagnosed in around 2005) but didn't realise they were a symptom of the BD. And neither it seems did my GP at one point trying to warn me, albeit very gently, that he thought I had lymphoma. What made it worse was that I had just had a very good friend die of the same illness!

    I had to accept that we just were never going to find a reason for these sweats, which can - and do - really muck up day-to-day life! Then I found this wonderful place and discovered they are a very common feature of vasculitis (which is what BD is).

    The forum has become very dear to the heart of most of us who visit. Because of our various disease processes there may be times when one or the other of us 'drops out' but we all climb back onto the perch again eventually!

    I hope you will find friendship, comfort, and perhaps most importantly of all, support and reassurance here.

    love

    Di

  • Thank you for the warm welcome Di.

    This disease is indeed a pig!! A filthy one at that!

    I'm so glad to have found you guys ~ feeling a bit better all ready just from having made the connection.

    Kat

  • Hi Kat. Welcome to the forum :) you have come to a fab place. I am also newly diagnosed and experience all of those symptoms that you do and which you aren't told is the bd. The sweats and stiff neck are terrible! Its so good on here reading peoples experiences and symptoms, it has been my saviour! No one does fully understand how it feels. Some days not even having the energy to breath! Before diagnosis I thought I had something terminal for sure. Have they started you on any medicines yet?

    Jo x

  • Thank you for welcoming me in !!

    I read through some of your posts and replies before joining and could really relate to much of what you were saying. I too am used to being quite active, doing challenging workouts and just having energy and motivation. Being stuck on the couch is so frustrating!

    I have been taking Colchicine for about a month now. My Rhuematologist wanted me to start taking one once a day and if my stomach was good start taking another until i end up taking 2 twice a day. I seem to tolerate taking one twice a day, but when i try to add more than that I spend all my time in the bathroom. Not enjoyable to say the least!! And so far it has not taken away my ulcers. Making eating and peeing a real treat as I'm sure you know!!

  • Hi Kat

    Welcome to our small but very effective and caring forum. I have come to think of it as an extension to my family and friends.

    The forum has helped me personally and I also have helped others, which both give me a sense of being useful in the world. This is a sense that I thought I had lost before the forum came along as it is difficult to get Doctors, people and family to grasp just how it can disrupt your whole life. Thinking it is just a bunch of ulcers in the mouth, but we all know different here and feel free to ask anything, even if it does sound a bit strange.

    You are sure to get friendly replies and will even find suggestions from people who have either the same question or even a possible answer.

    Some of us have the classic symptoms of Behcets whilst others have some other wiered and not so wonderful ones. Some reading maybe a bit frightening and depressing, but it is not necesarrily so that you will follow the same course of ilness.

    Diagnosis is a lot better and quicker now, than it was many years ago when some of us first experienced things going wrong with our bodies. I think that many of us didn't get the treatment we needed early enough and there were not all the treatments available that there are now.

    As Di says the sweats are deffinately one of the parts of behcets that really drag you down. A lot of us having Prednisolone adds to this problem.

    You can always get friends and anyone else to have a look in on the forum so they can see for themselves.

    Enough from me now and look forward to chatting with you again

    Andrea

  • Thank you Andrea, for the warm welcome!

    I have to say, my diagnosis did come quick. Although I suffered with the mouth ulcers for about five years without anyone figuring out why, as soon as the ulcers moved "elsewhere" my GP took one look and knew exactly what was going on. Two days later I was at the Rheumatolgist's and was diagnosed and given Colchicine. My Doctor is Middle Eastern and told me she had only ever seen 2 cases before in her career and that both of them had been back home. She also took photos of my mouth ulcers as they were so "alarming". It has been quite the journey.

    I am very happy to have found you guys and look forward to having the support of the group. I like your idea of having family and friends read through this site and will likely ask them to do just that. They can see that I'm not exaggerating or embellishing in any way and that this disease is a brutal opponent.

    Look forward to chatting more with you as well,

    Kat

  • Hi Kat, answer to your question my daughters age, nearly 25 with a 5 year old daughter herself. x

  • I too can't tolerate colchicine, was bad on even the one a day, stomach cramps and other goodie symptoms. Back on steroids until my next appointment next friday where he said we will discuss next medicines, very daunting!

    Completely understand what you are going through, how life changes over night, very frustrating! Always been so positive but with this there are days I just want to hide away from the world! Have to stay positive :) always new medicines being discovered and we don't know what's round the corner. :) :)

    Jo x

  • Welcome to the forum Kat :-)

    It is true that after suffering with various ailments for years and starting to think you are a hyperchondriac...... Hey Presto an answer to it all!

    So the first response is great at least I have an answer but then the realisation of the pain, the fatigue, the sweats, the bladder, the heart (not everybody gets the same symptoms) and you think bugger why did it have to be a rare disease !!! Knowing other people are going through it and understand how it can affect you is a blessing as you don't feel alone.

    I am lucky to be under 4 proffesors at a centre of excellence, where they are experts in BD after years of going to one hospital department for one thing and then others for something else to have it all tied up is brilliant.

    The way I deal with BD is to go with the flow, and do what I can when I can and lead as normal life as possible! One saying is" hang in there" well I know most people with BD do just that and we have blooming long arms :-D

    So on that note hang in there me lovely!

    Sharon :-)

  • Welcome Kat

    I am fairly new to this site and have been diagnosed 3 years now. I just want to say you can ask anything on here and will always find that many of us have similar symptoms or stories and it sure helps to feel that you are not the only one.

    My family are great but here I know that when I am having a bad day I can let off steam and am usually cheered up by the lovely comments and the laughter!

    Hang in there and remember you are not alone. It may be rare but that just means we are all extra special!

    hugs

    Angela

  • Thank you for the warm welcome!

    It definitely feels better being able to talk to people who can relate, first-hand, to what I'm going through. :)

    Kat

  • Hi Kat, Welcome to the site. I am fairly new on here too. I was diagnosed back in June after being poorly for such a long time. I finally got diagnosed in June this year. Initially I was put on Colchicine along with Tramadol and Amitriptyline but after a bout of really nasty ulcers I have been put on Azathioprine, which I am so pleased to say is making a real difference.

    I'm struggling a bit with depression at the moment but just need to do what I do best and plod on. Everything will sort its self out.

    Welcome again to the site. C xx

  • Glad to hear you found a med. that's making a difference. Colchicine doesn't seem to be doing much for me so far.

    I understand the depression. It gets so frustrating feeling sick all the time and having no energy to do the things you want to be doing. Not to mention the mental and emotional toll of having to deal with the presence of pain in your body 24-7. It's hard NOT to feel down. There have many times people have asked how I'm doing on a particular day and I tell them "i'm feeling pretty sorry for myself". I've had a few low moments where I've just cried and thought, Oh my god ~ this is my life now.

    But, like you said, we must plod on. Day by day. Minute by minute sometimes. And find those moments of happiness whenever we can.

    Thank you for welcoming me!

    Kat

  • Hi Kat,

    Thanks for your message. Not good to hear the Colchicine isn't working for you. It did help to reduce the frequency and severity of my ulcers for me but not enough to suppress the disease. Since I have been on Azathioprine things are gradually getting better.

    I am still so tired all the time but think thats just part of my life now.

    Can fully sympathise with you on the crying front. Some days I find it very hard to hold it together.

    Being a single Mum with BD and still living with my parents I just can't see how I am ever going to meet Mr Right!!

    I have found a social group near me which I am going to go along to. It is on a Thursday night and starts at 8.30pm. I'm usually shattered by then, but need to do something to get out there and meet other people.

    Sorry for dumping how I feel on you, needed to get it out to someone who understands the depression.

    Just to let you know I am here to listen to how you feel too, so don't be afraid to off load.

    Clare x x

  • Oh, Clare, you poor old thing (okay, young thing). I can remember my days of being a single mum and how difficult it was to push myself back out there - and I was young, healthy, and had all my in-and-out bits in the right places and the right proportions! I too lived at home with my mum and dad and the single mum-dome and need for sitters because I worked overnight (croupier in a casino) put terrible stresses on the relationship. As it turned out, things got so bad that I eventually gave up the custody of my four-year old daughter to my ex-husband and his new wife-to-be (his ex-secretary! Bitter me? Nah!). That daughter is now 38 years old and everything that has gone is water under the bridge. It's an old saying that everything comes out in the wash but, in my experience, it truly does.

    Eventually, after ten years it has to be said, I met and married within the space of four months and we went on to have two sons, who are now all growed-up. And as for our marriage, well, it's stronger than ever and he looks after me.

    I do worry about it sometimes, I mean, he didn't sign up to be a carer, did he? But the fact is, he loves me.

    You will find somebody to love you too! I can't promise but I can more than 90-odd percent guarantee it, because that is what happens. It is more likely to happen when you stop worrying about it!

    I know it's hard to accept, especially when the BD is at it's worst, but you are Clare, you are not Behcet's! And it seems that you are getting more in control of your condition too!

    You keep on girl (you have to imagine an American accent here and not my native cockney) because good things come to those who wait. Sod the Behcet's, it can't change who you are and what you have to offer.

    Here endeth the lesson. I might just have to go rest up now!

  • Thanks so much for your kind and meaningful message.

    I am so so lucky to have great parents who love having me and my Daughter living with them. We are a very close family so i have no worries there. I don't think I would have coped with bringing my Daughter up on my own the last 4 or 5 years with feeling so poorly and I am so so greatful to my Mum and Dad. My Mum is like a best friend to me.

    You are right in saying that I will find someone and like you say I need to stop worrying about it and go with the flow. Mr Right is out there but I just don't know it lol x

    It must have been so hard for you to give up your Daughter to your ex-husband and I can't imagine my life without my Daughter in it. She has been my inspiration to get up and fight BD.

    Thank you so much again for your message it has really put things in perspective for me to enjoy what I have got now and not worry about tomorrow till it happens.

    Clare x x

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