Many more symptoms than just the typical 'three' that one can read on these sites!

Hello, I am brand new to this site and very happy to have discovered it! It appears that there are a multitude of symptomes and not the typical three, ulcers and eyesight that I first read about. That is why it is so important to have a site like this whereby people can discuss various symptoms and allow other sufferes to know they are not alone! I was bowled over to read about the 'tongue feeling too big for the mouth'. I even went to see a psyhcoanalyst and talked about this feeling. Of course he looked at me as if I was mad:) But when I read that last night I had been feeling it all day and put it down to stress or something. So, phew, thank you all for being involved, what a relief!!! I too am beginning to believe I have probably been suffering from this for years, however, stressful situations must only contribute to flare ups, yes? Any replies/thoughts on stress management would be greatly appreciated, still feeling in shock after discussion/announcement with Doctor, Friday.

8 Replies

  • Hi And welcome to the site, we are are friendly bunch trying to help each other with tips, advice and a shoulder to cry on or a rant or just a good chat.

    I have been a sufferer for 30 years and I'm still learning about this disease. One of my doctors told me years ago that BD is a disease of many diseases.....soooo true.

    Yes many of us believe stress to be a trigger and my best tips are....stay as positive as you can walks are really good, fresh air, swimming and keeping yourself busy. Obviously REST is very important especially in a flare. Listen to your body and do as you warn but don't push yourself too hard and learn to let others help you, we all need a helping hand at times.

    Hugs and Smiles


  • Thank you.

    Interestingly enough I have two dogs which I walked every day , up and down tracks and in and out of the forest. A very good daily work out and I have always been an active, outdoor person. Unfortunately, in December I fell off a chair landed on my feet pushing the tibia into the knee cap and breaking both! Ow, that hurts. I also displaced the tibia, result, one week in hospital and am only now, 4 months later starting to hobble around. My first full blown flare up started about 10 days ago after a particulary stressful event and I have to admit, too much alcohol in an effort to calm down. So, for the moment walks are out of the question but can see they were keeping me healthy in more ways than one. This is so good to be able to write out thoughts and I can now see where my priorities lie and will take action! Thanks again.

  • By the way, thanks for sharing what your Doctor said many years ago, 'a disease of many diseases', sounds so right.

  • Hi there, my BD came in very rapidly aged 45 over a year or so. Prior to that I never really had illness other than almost constant tonsillitis as a child which continued till I had them removed. Thus I found it difficult to adjust. One year on from diagnosis I have just admitted defeat and left my career. Now you may think that's a huge thing to do, but I just could not work at the pace i did previously and people can't accept that. I've learnt a lot about becoming part of the disabled community, not much of it has been a lot of fun.

    However I have enjoyed meeting others with Behcet's, it's a very odd but we almost have our own language. Like you noticed the comment about the swollen mouth, it is very reassuring to meet others who really understand.

    Not sure where you live, but there are centres of excellence in Birmingham, Liverpool and London. In addition there are support groups all over the place so I would recommend that, the illness made a lot more sense to me after that.

    Jill xx

  • Thanks for replying and your advice.

    Apart from holding your head in your hands due to chronic pain people can't see the disease. I really noticed when walking with a splinter and walker the difference in peoples' attitudes, very sympathetic. But an invisible disease??? I'm sorry to hear you had to abandon your career but if your flares were like the one I have just experienced I can't see how you could have continued. Do sufferers get an invalidity payment? How does one cope?

    As you say it's reassuring and validating to find out there are others who suffer from the same complaints. I thought I must be one very special kind of weirdo!!!

    At the moment I'm in France but hopefully moving back to Scotland sometime in the near future, I see there is a centre in Edinburgh. I will definitely be joining it.

    All the best,


  • By the way, what brings on the 'brain fog'? I spoke to my daughter on the phone yesterday and don't remember it!!!

  • Have just re-read your thread about it. Kind of understand it.

  • Hello Anne,

    You asked about 'brain fog'. This something almost all of us suffer with, and is quite unsettling. I am lucky to have a very understanding husband, and a loving family who help me laugh about my lapses.

    All the best regarding your return to the UK. The Centres of Excellence in England have been a great help to many. I am with the fabulous vasculitis team in Cambridge, and I hope you get a superb result from being with the Edinburgh group. Keep calm, and carry on! xxx

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