Log in
Behçet's UK
4,289 members3,674 posts

Well, you don’t look ill.

I don’t know about you but over the years I’ve hear that hundreds of times.

I was diagnosed in 1989 at the age of 24 after repeated Uveitis episodes resulting in an Atropine injection in my eyeball and 3 weeks later steroid in what looked like a spider sack under my eye. With skin issues and joint problems coupled with Mouth and genital ulcers I was feeling a bit under the weather.

2 years until it burns out became 10 years until it burns out which became sorry chum, you’ve got it for life. Since then I’ve had Erythema nodosum, a blood clot in my lung, lesions across my back, a grumpy attitude leading to depression and happy tablets as a result but through it all no one realises I am unwell.

Here I am almost 30 years later and like all other sufferers of what is an annoying, painful and mostly hidden condition I just get on with it as best I can. I take my hat off to everyone of you who has this worse than I do. I really feel for you.

I highly recommend using a centre of excellence if there is one near you. In my case the 100 odd mile round trip is worth it to talk to medical professionals who know what Behcets is. They and the support staff at the London Centre of Excellence have been patient, caring and genuinely interested in how I’m getting on.

Lastly. I’ve never got over the rapid weight I gained when I was put on prednisolone. Super fit to super fat, at least that’s how it feels to me. I’ve enjoyed playing hockey since I was 11 but the last 30 years of being 3 stone heavier than I was at diagnosis are starting to cause joint, back and knee issues just to balance out the behcets.

Oh well. Like all of you I’ll just have to crack on with it I guess.

17 Replies
oldestnewest

You don't look any more ill than I do!!

I mainly suffer with erythema nodosum, mouth ulcers, and a headache that I can only describe as crippling. On the odd occasion I suffer arthritic like symptoms in my knees and toes.

I consider myself to be one of the lucky people that have this disease as I seem to have a very mild version of it that is mostly controlled by the methotrexate.

I used to do a lot of road biking, clocking up the miles and clearing my head, but have not been on a ride in over 16 months due to the lumps it brings my legs out in.

We live and endure, we cope and we hide how we feel. We just get on with it.

So here's to you, me and everyone who is just getting on with it! Cheers!

3 likes
Reply

Hi KDL1964

Yes the term "your looking well" has for me been like with you mentioned many many times I do get fed up of hearing it so I now curtly reply smiling "it's what is going on onside that you don't see that matters..." seems to work and reminds them why I am sat in front of them in the first place... I always wonder if I turned up less presentable and unkempt if I would hear the same words.

As far as the weight is concerned, as I have aged my bodies ability to enjoy the sports and pastimes has meant weight gain and even though it's been relatively stable for years now I still struggled getting my head around this, I was diagnosed first with Ehlers Danlos and then 12 months later Behcet's, but only very recently 2016 & 2017 when I'd reached rock bottom and rheumatology were finally involved... so I now did have some other big reasons other than age, like loads of us, I have managed or should I say struggled and shuffled along for decades not knowing what was going on, and nobody else knew either during the many decades... anyway the diagnosis of Behcet's made me read and read about the condition and I decided to alter my food intake and simply made an adjustment to remove all refined carbohydrates, I have found this pretty easy to do and I still eat great meals just replacing the refined carbohydrates with more other fresh products, I occasionally eat quinoa or couscous and have porridge for breakfast most days and yes I do on the odd occasion, especially when eating out, have some potatoes, bread, pastry etc. Though it bloats my stomach. What has happened with absolutely no effort is loosing 2 stone in weight :-) which I had not really expected, my husband has too.

Whether loosing the weight has made any medical difference to the BD or Ehlers Danlos I have no idea but for my own mental health it has made a difference to the way I think about myself, yes I am still living with daily pain, still getting flares, but I do feel better about myself :-)

Like many I'm nowhere near a centre of excellence we just have to deal with the people we are put in front of and hope they can help, I have become much more vocal about my health and wellbeing and don't just sit there, I question consultants and GP's, I make notes and read a lot about my conditions and have now started asking the people I am being referred to do they have the expertise in the many areas of my body they are talking about, I feel rheumatologist are great but they are not experts in all fields covered by BD, before I knew I had BD if I had a problem with a particular area of my body I was sent to that specialist now I feel rheumatologist have had to become pseudo-experts in so many areas, on a recent appointment organised by my dentist the specialist said oh you're being treated by rheumatology and I replied yes but you are the expert and he replied you are best seeing the one specialist for BD that's how this hospital works so I said do you liaise with one another about best treatments and he was very vague and said if the medication given by rheumatology did not help then to make another appointment to see him again...

Take care, keep a positive mind and be happy. Gillian:-)

1 like
Reply

Good morning KDL!

I usually flick on to this forum as i take my multiple medications in the morning before i can even attempt to get out of bed and your post popped up and immediately brought a huge grin to my face.

The reason for this isnt because your post was funny in any way and i also echo all the things you and the people who have replied have all said regarding this post but the reason i was smiling to myself is because i remember so well the many, many years i went through before diagnosis (including the medical teams i saw that ended up shrugging their shoulders and sending me away with the explanation that ‘it is all in my mind’) and how i have grown internally to a point where i can now get on top of this awful thing and i have learnt to live with it and not let it rule my life.

The hardest part for me growing up through puberty with these strange symptoms that no one else seemed to have was doubting my own sanity when i was put before a team of psychiatrists at the age of 16 and drilled about why i was making Up these pains i was saying i felt inside? For several years i doubted my own ability to recognise if they might be right and am i creating things and my body is hurting badly to empathise with these thoughts so was i really going totally mad??? I felt so very insecure and was unable to form close relationships as a result of this.

This was back in the early 70’s around the time the Behcets Society was first formed so there was nothing out there to recognise this condition in the general medical departments i went to.

When the physical symptoms on the outside of the body started to appear then it became clear that there was really something wrong with me and i recovered my self esteem but then became really angry towards the medics that were then trying to help me with no success so, of course, it was clear that i had swung from one end of the spectrum to the other!

I am now 60 years old and thank the heavens every day for Prof Moots at the Aintree COE who i have been treated by for around 15 years now as he not only understood me but looks after my treatment plan and i am so grateful for his care and expertise and all of his teams work to make me able to cope again. It is so difficult to put into words the tremendous difference he has made to my life and i will for ever be in his debt.

These days i am finally able to face the world as a whole person who can drive her own way in life with the confidence that i have someone who is always there supporting me through all the twists and turns this nasty condition brings.

If I haven’t said it enough to your faces ..... Thank you so much for being there for me!!

That also applies to all the people who write on this forum as without you it would be so lonely out there.

Take care all xxx

X xx

6 likes
Reply

Hi xandii,

So glad to hear things are better for you nowadays after a long and tough diagnosis journey.

This is my first visit to this group and I’m very happy to hear your comments about Prof Moots at the Aintree COE as I’ve just been referred to him this week.

I was diagnosed with Rheumatoid Arthritis in 2015 and it’s been a tough treatment journey with lots of pain, anger, frustration and anxiety (and a fun addiction to new pyjamas, haha). I now have a new understanding rheumatologist, great GP and caring Pain Management team, but I have some symptoms which there aren’t answers for.

I saw my rheumatologist this week and she is concerned about my eye problems and ulcers (above & below). So she wants me to be checked out by Prof Moots to check whether my diagnosis of Rheumatoid Arthritis could actually be Behçet’s Syndrome.

So I’m now researching Behçet’s to try to understand it, and looking at support groups for advice on managing my symptoms until I get future diagnosis answers.

To you and everyone else, I’m happy to see how supportive of each other you all are. Take care all xx

Reply

I know what you mean. I was having an MRI last night for vision loss and mobility loss and the guy is complaining about arthritis in his thumb. Guess it’s all relative. 😏 I really envy you guys over there. We don’t have the centers for excellence. We have the battles of the specialists and it’s really challenging to even find one who is comfortable let alone knowledgeable about Behcet’s especially here on the west coast of US. I just got back from three hour drive to MRI, my husband drove our family. Nice drive over lovely mountain pass at least.

1 like
Reply

Hi hunny!!

I know I’m fed up of that too! I was diagnosed 2 and a half years ago ( 41 yrs young!) and feel I’ve aged 10 yrs and put on 2 stone!! ☹️ I start the inflixamab infusions on Monday and I’m half dreading it but half keeping my fingers crossed that we find something that works! 🤞I am writing this at 2.45 pm as I lie in bed with a cup of tea which I’m drinking through a straw because I have horrendous mouth ulcers and after vomiting and having diarrhoea all day ! ( probably as a result of being a nurse and have a compromised immune system )! Please keep your chin up ! I will , if you will!

If you need a chat please feel free to message me !xx

Reply

Hi thanks for the post it was very refreshing and honest, my story is very similar to yours even down to the eye injections due to uveitis (ouch!!!) 30 years later and I continue to manage this wreched disease the best I can, the methotrexate is a big help and regular swimming sessions keep me reasonably fit.

Keep fighting and enjoy the bits you can.

Cheers

Reply

I look completely normal now. I didnt realize how ravaged and worn I used to look. I chuckled with the grumpy mindset. I dont flare like I used to, but when I did, it was very night and day. I would be normal one second, then completely facked the next. I felt like a hypochondriac because of the sudden onset of symptoms and pain.

I always got meningitis with my flares; I would be a general pit of nothingness and misery for a following weeks all while wincing when trying to attempt to turn a door knob.

Along with your "you dont look sick," I frequently get told, "You're too young to be sick or too young for arthritis (I am 30 now)." Boils my blood e-v-e-r-y-t-i-m-e.

I will say, this disease definitely lets you appreciate the good days...especially when they dont seem to come in a row sometimes.

Thank you for sharing that. Stay well my friend.

1 like
Reply

To those of you who have taken the time to reply to my rant/message, thank you for the feedback and letting me know how you are getting on. To every one of you who has it worse than me I salute you. I expect you are all of the opinion that you just have to get on with it and I'm sure everyone has had a time when it caught up with you and no one else noticed. How annoying is that?

Over the years I have found myself wondering whether it's all in my head or is that horrible but short lived headache part of this condition? What about the awful migraines I was getting, no, that was the Cyclosporin. Awful tasting stuff. How about having to pull over in the car because I was suddenly so tired and needed a moment or two (even a kip on occasions). The opposite end was the thalidomide, I couldn't wake up after taking that one.

Let's not touch on everyone thinking i'm Mr Grumpy all the time or my boss who looked at me blankly when I tried to explain how this and a online slots issue contrived to make life even more difficult than it already was. I was informed that there was some research taking place to see whether Behcets might be a trigger for gambling issues. Great. Another thing to thank the condition for.

I think I have now reached a point when I think everything is part of the condition and there is nothing that can be done so I therefore say nothing. That might be the best when dealing with GP's sometimes. For example, I suggested to my Dr. that I was looking to cut out beer for a while and he suggested I should seek counselling for alcohol addiction. forgive me but what a twat.

Woe is me and all that. It could be worse.

It could be better, you know, your cured and all that but that's something we all look forward to I guess.

Have a good weekend one and all and if laughing at me brings a smile to your face then it makes it worthwhile (almost).

1 like
Reply

Reading this is making me feel better about all this. I've been diagnosed for 4 years now and am managed with cellcept 1.5g. I only need Prednisone once or twice a year and only 5mlg. Otherwise I am in excellent condition. I suffer edma in my ankles and ulcers but all of it is under control. As you age do you need less medication? Does it ease up at all? Im 31 with 5 kids, I have a lot to live for, I am a very involved father and want to be active with them as long as possible.

Reply

Hi,

It eases up once they have your particular symptoms under control. I don't get genital or mouth ulcers and my skin is under control. I take 150mg Azathioprine daily for this. Activity wise, I have run a half marathon, I play hockey & golf and used to play cricket and squash as well. I don't always play well but I will take that bearing in mind that i'm now 54. The only thing I would say is that I have been using a gym to try to get fit again and lose the weight and I keep running out of steam, usually resulting in my having to take a week or two off all exercise whilst the body recharges. Re your kids, and well done you for having that much stamina, I have a 23 year old son and to play adult hockey alongside him was really satisfying.

Best of luck, I won't say it will get better but you will get used to it.

Kevin

Reply

What’s your experience with Azathioprine and being around people who may be sick?

Reply

Hi,

I've been taking Azathioprine for about 20 years now. I find that I don't tend to get everything going about when when I do get a cold or such like I really get it. To be honest though, without the Azathioprine I would struggle an awful lot more than I currently do.

Reply

Hugs to you!

Reply

I take Rituxan infusions and Revlimid 5th daily. My skin lesions cleared. Also ozurdex steroid capsule injected into eyeball may help clear your uveitis. No am happy again. I wish the same for you

Reply

Yes I can be in so much pain and agony and someone tells me “oh you look fine” “you don’t look sick” “nothings wrong” and I want to punch them, but I don’t have the strength lol

Reply

I don’t look ill either. Love this meme. It says: “You don’t look sick.” And response: “You don’t look stupid but....” Maybe you can look it up.

Reply

You may also like...