Diagnosed in February this year: Hi all, I was... - Behçet's UK

Behçet's UK
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Diagnosed in February this year


Hi all,

I was diagnosed in February this year but have had symptoms for 6 or so years which gradually got worse. Originally I was told I needed to just live with the ulcers.

I have been struggling recently and have found the diagnoses incredibly overwhelming.

Currently my flare ups are frequent and very painful.

I have felt incredibly lonely and like it's hard for others to understand.

10 Replies

I am so with you on that feeling. I've been going through this since I was 17. That's 20 years. When I walked in the Beçhets centre of excellence in may I burst into tears. The relief was phenomenal, still no definitive answer but I got the diagnosis of probable beçhets. For me, talking to the volunteer there, who I have to say was fabulous! Helped me feel like I wasn't alone! This site helps because everyone has been/still going through the same at one time or another. You are not alone, I don't know where you live but apparently they have a good support group in London. Everyone is a sufferer and they get a guest speaker then go down the pub. I think the Beçhets society can help with where they meet? You are not alone here!

Sam x

Kirstymarie04 in reply to Samb-s

I went to the centre for excellence in Birmingham in February it was a relief to finally have some answers and be on the right track. Unfortunately I am 2 and a half hours away from London.

I recently had to have a month of work because I had gotten so overwhelmed and anxious it all got to much.

I go back to Birmingham in August so I think I'll opt to see there psychologist there. Right now I'm just so tired the majority of the time. By 4pm I want to go to sleep. Although I'm not allowing myself to.

At the moment the tiredness, ulcers and headaches are the worse parts although today I have had pain in all my joints at once.

I just feel that it's hard for others to understand and that makes me feel left out with friends sometimes.

Samb-s in reply to Kirstymarie04

Seeing the psychologist is a really good idea. Its difficult for friends and family to understand because some days, they don't see any of the effects it has. See if you can get in touch with the society and see if there are any socials in your area. I think on this app you can look for people in your area who have BD.

I wish you well x

I was finally diagnosed 12 months ago after 15 years of symptoms. I know EXACTLY how you feel. I feel the same. I have just been to see my GP regarding feeling the same as you. If someone has a broken leg, or heaven forbid, cancer, people can see it or have heard of it, or know someone who is suffering. So the level of understanding is there. With behcets, it is a case of "oh - never heard of it. Have you seen what is happening in Coronation street"

I have just been to talk to my GP about this. He was brilliant actually, listened, suggested some medication - long story - and is seeing me again in a couple of weeks. I can't talk to so called friends, as I don't trust them with how I feel, which is very vunerable. I have found the replies on here extremely helpful as they understand what we are all going through. I hope this reply helps in some way. Keep in touch, and I will be thinking of you! x

Thank you for your reply it has help. I went to see my GP mid may she gave me some medication and time off work. I ended up having a month off and I did go back to work feeling better in myself but when I flare up it's hard to explain symptoms people cannot see.

My family have been amazing but I find it hard with the majority of friends. I went back to work last week and I have to say the atmosphere with my friends their was very awkward and it's still not how it was previously.

Talking to others who have Bechet's and seeing their stories I hope will help x

understand that feeling well! It may be that they just don't know what to say. I find just acting as if all is normal helps. The ones who are genuinely interested will bother to ask and find out. Keep posting and keep in touch x

I'm acting normally I don't really talk about the Bechet's though I'm happy to tell people if they ask not many people are aware I have it as I've not been comfortable to share it. I don't like being vulnerable.

I think for me the diagnoses has just felt like it's come after a hard few years. My dad passed away, then my mum was told she needed a knee replacement and she already has a lot of other health issues. It's just been one thing after another.

I have always been the strong one able to deal with everything no matter what.

I have in the passed few weeks started a note book details my symptoms daily and making notes in the back of it with questions I have for when I go back to Birmingham. X

Blimey - we could be twins. I have had exactly the same - other issues to deal with and the behcets diagnosis was the final straw. Always been the one that just got on with it - the strong one. It is only now 12 months later that it isn't the first thing I think about when I wake, but it hasn't been easy. I have changed. I am not sure some around me can handle it. The note book is a good idea. I have had a reply from Birmingham. It would be 12 weeks before I could be seen after a referral from my GP. I see him in a couple of weeks so I will discuss it then. At the moment I feel well. I just wish I could bottle it for the times that I don't. Look after yourself and keep posting x

Wow how strange our stories are so similar. I have to say Birmingham were amazing. I had a reaction to the higher dose of my medication so I rang them and the nurse rang me back and talked me through everything. I'm going back at the end of august for my 6 month check up. My consultant at Nottingham too has been amazing I have regular check ups with him and when I'm not feeling my best he sees me a few weeks later to check I'm doing better.

I had to leave work today because the flare up was too bad for me to stay but where before I would stress and be anxious I was completely different. I used to stay no matter how bad I was but I've started to realise I have to put my health first.

Yeah... been there. You need a knowledgeable rheumatologist. Usually colchicine will clear up the ulcers - it takes time. I take 4 medicines daily to maintain some level of normalcy. It's kinda hard to look "normal" outwardly and have so many issues. Look up "The Spoon Theory" - it helps. Everybody is different with this disease but with commonalities. Your challenge is to LIVE with this, move forward each day and demand respect from your doctors ... so many little issues will pop up. Pain will probably be part of your life but it doesn't have to rule it

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