Behcet's Syndrome Society

The rollacosta of behcets

After a 2 year battle with my GP I eventually got to see a consultant.

It's been a rocky couple of years, first there was elation I wasn't mad and a raving hypocondriact, however that was short lived as the realization that I had a horrible and incurable illness soon followed. This left me depressed, especially as things with my health got worse and worse.

Then the lucky dips of treatments began...

Azathioprine, this was horrendous, white bloodcell count dropped far too low and I felt like death. Back to the drawing board, next a high dose on steroids and hydroxychloroquine too, which helped a little. Now I'm on methotrexate which again is helping and I'm still waiting for that wonderful place called remission to kick in.

I'm learning to live with my illness, it's not easy sometimes.

My career has almost disappeared. I'm a self employed fitness instructor which is not easy when your body doesn't work. I've had to make changes. Now a part time pilates instructor. I'm also enjoying the extra time I have at home spending time with my family, rather than being the bionic woman.

Some days I need to rest. I rest now now with my kindle and trashy magazines. Days I feel good I savour and try not to go mad.

The last 4 years have been a rollercoaster.

4 Replies

Hi Frisky...thank you so much for sharing your story; I ambegining to realise that I have been very lucky in the care attention i have had over my many problems. It must be so hard for you as someone who has been so fit and active. I had breast cancer seven years ago and have had to readjust my life already. Now I am trying to be a bit more active and have started going to a zumba class, which i love although i do have to sit out for some of the time. Hang in there, girl


Thanks my proffestional head is saying try a pilates class too, as they are very good!!

Thanks for your positivity is nice to hear that you can get on with it again..... x


Hi Frisky

Well you now know you are not alone, we are hear to talk and try to help. I wrote in another post that I was fed-up of being labelled a hypochondriac so your story resonates with me. My GP was useless, I say was because I dumped him and moved to another surgery. I once was in so much pain with my joints I rang the surgery in tears asking for help. The GP asked me how long I had been like this and I told him for many years, certainly as long as he had been at the surgery. His reply astounded and angered me. He said "if it's been this long then you can wait until next week for an appointment" He refused point blank to see me earlier or allow me to see another GP!! The sheer gall and uncaring nature of the man was beyond belief.

My career has also gone, I am a self employed IT consultant so I just have to grab work when I can. At 50 I am not exactly top of the list when it comes to a new job! I can no longer participate in sport - I was sport mad, running swimming cycling golf hiking etc.

You will get more used to it as time progresses, I am now on Naproxen for my joint pain and it really does help - everything else failed. When I get an episode I know it is time to just go to bed and try to think about the episode ending. I can sleep 18-20 hours per day and just feel inhuman, almost as if there is nothing to live for. I am very lucky because I have a loving wife who has always stood by me and understood I was not a hypochondriac as she had seen me during an attack and it was not acting. She didn't know what it was so we were both relieved when I finally had my diagnosis. Now she tells people I have Behcet's and they should Google it.

I have suffered for about 25 years, probably longer when I think back to younger days when I had issues. I hope you feel better about yourself soon and can learn to deal with the highs and lows, I am sure you will.


thanks for your kind repky, i do not feel quite so alone with this illness when i hear other people going through the same things! Its so hard to be asble top explain things to my husbands, kids and friends, why yet again i have to spend all day resting or in bed.


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