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Behçet's UK
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Say that again, please!

Hi friends. I'm currently in the midst of a bad flare, and am finding myself feeling much more unstable emotionally, mentally processing at a slower rate than normal, and having frequent dizzy spells. I am familiar with the emotional toll that being in pain everyday produces. I'm wondering whether specific flares target not just the body, but the mind as well. I know that this might come off as an odd question. Everything I know about this condition is through Google. I don't have a rheumatologist at the moment that I can consult. I'm hoping that someone understands what I'm referring to and can shed some light on the situation. Thanks for reading. Wishing you good health and peace of mind.

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Hi

I am exactly the same and discussed this my rheumatologist on Tuesday, she gave me no encouragement as to what could help only that it might be caused through a flares, the fact I am up waltzing around the house in the middle of the night most nights dealing with muscle and joint pain and the fact I feel very fatigued cannot be helping.

I had a head MRI late last year and nothing Behcet's related seen. I am currently waiting to see a neurologist because of pressure I feel in my nose, eyes, forehead and front top of my head, the rheumatologist referred me.

I walk and garden, plus do my stretching and exercises as much as I can to try and make me feel better, my husband takes me out and tries to fill my dark times but sometimes I just cannot take any more and want to run away and hide :-(

Hope you can get to a better place soon, try doing some nice things for yourself and try to take your mind off over thinking if at all possible, this is when I get to too dark a place.

Gillian x

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Hi Gillian,

Thank you so much for your reassuring reply. I'm glad to hear that I'm not the only one waltzing through the house in the middle of the night. I'm sorry that you were not able to receive any answers from your rheumatologist. With so little known about BD, this condition has a tendency to make you overthink. I am guilty of this as well. Thanks to your advice, I am going to explore a Buddhist temple today after work as a little treat for myself even though I didn't sleep at all last night. I hope that you feel better soon and that there is always some light in the dark tunnels you find yourself in during flares. Until the two of us find more answers, consider me as your dancing partner! Two dancing ladies waltzing late into the night, dancing to the same tune in different corners of the world, while the men sleep. : ) Take care of yourself.

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Ahh but what tune are we waltzing to 🤗

I was pleased to read you have treated yourself to a visit to a Buddhist temple, it is really important to try and do different things otherwise life is like living in a never ending spiral with Behcet's dominant in its centre.

We had our diaries out last week and sat going through dates for when we can go away whether for a night or longer, out for drives, picnics (even in car 😋) walks and visiting other places of interest. We then drew up a list of these places to visit so we don't end up going nowhere because I cannot be bothered to think where because I'm not feeling 100% 😏

I will think about you as I waltz around looking at the stars, keep in touch and try not to let this condition get the better of you.

Take care of yourself too 😊

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Hi Ladies,

I feel your pain and frustration with the BD.

I am a very driven person at work which is very negative towards my body. When I have a great day with good results at work, the inflamation goes wild. I have increased pain everywhere.

I am currently struggling with bad eye pain and inflamation. The Optometrist gave me steroid drops for my eyes, but they just seem to stay painful. All I can think about is that I don’t want to loose my sight.

It is sometimes very hard to stay positive, but keep dancing ladies! The great thing is we can share our journeys, recommendations and experiences which makes you feel like you belong somewhere, somewhere other people understand.

Stay strong!

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Hi Sasha

Have you considered trying some Hypromellose drops in your eyes these might help sooth them in between times.

You are right about sharing on here it really helps :-)

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Kudos to you Sasha-pi for continuing to be driven at work even with this condition. It's not something many can do, myself included. I hope that your eye pain reduces/ goes away soon. Hang in there!

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I really feel your frustration.

I'm yet to be diagnosed with any disease but behcet's is the closest I get with my symptoms. The last time I went to rheumatologist to test me on SLE panel test, they told me my illness is not 'severe' and 'apparent' enough to be diagnosed. Until one day I found out this disease that involve in vaginal ulcer which I've been having since few years ago, then I think maybe I have behcet's all the time.

Yesterday I went to neurologist to consult my vertigo I have almost everyday, but they put me on generic medication without much further investigation although she know the fact few months ago she diagnose me with have encephalitis.

But life must go on, although it's hard but I have to make peace with my current self. In good day I can do my part time work, watching movies or going to beaches. I'm also lurking in behcet's group facebook, reading and sometimes replying post there.

Cheer, stay strong!

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Thank you for your response luminatika! I love your username! It is so frustrating, almost infuriating, when you go into a doctor's office and have to try to convince them of the issues because they don't see it. You said that you experience vertigo spells every day. I really hope that they subside. Take care of yourself!

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Mind and body are definitely linked. If your body is working really hard fighting infections and dealing with the inflammation of the tiny blood vessels that is Behçet’s, then it will be impacting your brain too. We need to rest during a flare but it can be so hard to do, especially when the world cannot see how unwell you are with the “invisible disease”. I struggle with the mood changes of steroids used to treat the Behçet’s flares. The steroids make me a bit hyper and cause insomnia so then I am awake at night, and have been known to tidy and rearrange the house at 2am or decide to clean the windows just when my body needs to rest! Telling your nearest and dearest what is happening definitely helps and asking them to force you to rest, or plan quiet days will help, or keeping a diary of what you are doing (and setting limits) is a good idea. I now have a plan with family and GP about what I will do in a flare that needs steroids eg to take sick leave if steroid dose is increased to 20mg, use sleeping medication zopiclone for those nights and to rest. It will make recovery so much easier and reduces the burden for everyone. For some crazy reason I have worked in the past while on 40mg prednisolone with all the ulcers and soldiering on but it did not help anyone! Good luck finding the balance.

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Your idea of keeping a limits/ what to do diary for times when you're experiencing a flare is amazing, Legomum! Thank you so much for sharing the technique. I am going to try and make one of my own. I hope that you're not stepping on too many Lego pieces. Even though we, with this condition, can handle ridiculous amounts of pain, stepping on one of those can take you down. : ) Sending well wishes!

P.S. If your username has nothing to do with Lego pieces, and represents something sentimental in nature, please forgive me for my Lego pieces comment!

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Thank you all for sharing your experiences. I keep thinking I'm losing my mind. When a flare starts I can't sleep but I'm fatigued. My mind races and I feel anxious about everything ... I have been trying to manage my Behcet's but end up either doing too much (more fatigued!) Or not doing anything causing depression and a big black cloud over everything. I never see my rheumatologist and GP hasn't a clue!

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Hi LindsG59! My mind went on a mind trip when I read your response. It was as if you slowly extracted my feelings and turned them into words. The contradictions that occur with this condition are ridiculous! For anxiety-ridden days, I use a natural stress relieving vitamin from my local health store. It manages to calm me down and elevate my mood. Hoping that you find ways to combat the contradictions! Take care!

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Maybe you guys should start a “virtual” Behçet’s support group, especially if you are in Canada and unable to meet other local patients? You could meet up over FaceTime or Skype calls (in the middle of the night when you are wide awake!!)

We have the luxury of Behçet’s Centres of Excellence in England and support groups run by volunteer patients. I learn so much from other patients there and online in this group, and meeting up really helps you know you are not alone with all the weird and wonderful symptoms of Behçet’s. You could join the Behçet’s UK charity (minimal cost...I think it is £15 or £20) and receive their newsletter every few months (via email) and tap into supports that way too. I am sure tele-Medicine and Skype calls are the way of the future too and already well established in places like Australia so maybe we could learn from that for peer patient support

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Legomum, would you by any chance happen to know if the Behcets Centres for Excellence accept international patients? I have contemplated the idea of moving to another country if it means having greater access to specialists.

It is currently 3:31am. An overnight virtual support group? Sign me up!

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The London Behçet’s Centre of Excellence sees international patients (usually for diagnosis I think) but there is probably a pretty big fee. Can find more info via their website and Admin team:

behcets.nhs.uk/health-profe...

Behcet’s Centre Administration

Dental Hospital

The Royal London

Turner Street

Whitechapel

London

E1 1BB

T: 020 3594 6085

Email for patient identifiable information eg. referrals:

BHNT.londonBEHCETScentre@nhs.net

Honestly I don’t think it is worth emigrating for! I think the experts are keen to share their knowledge to improve care in other countries. They have annual international conferences and share guidelines so pushing your doctors to update on those would be a good move. People like Joanne Zeis in America attend and advocate for us patients, writing books and sharing the latest research in ways we can understand. I have given a copy of her book to our family doctor as our 8 year old daughter and I both have Behçet’s. Just getting one local doctor on board and understanding your illness makes a massive difference!

amazon.co.uk/Behcets-Diseas...

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Sleepio is a new program from Prof Colin Espie which uses evidence- based approaches to help sleep. Very handy to have it all online and proven to help even chronic insomnia. You can take a free baseline survey and see how you score. The NHS is paying to use this now as proven so effective in patients. I am not sure it can overcome steroid-induced insomnia but seems pretty good dealing with other aspects of poor sleep. May be worth a try?!

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Hi UKToronto

Hope you are doing ok. Also the 2 other centres of excellence at Birmingham and Liverpool:

behcets.org.uk/birmingham-c...

behcets.org.uk/liverpool-ce...

Explains about patients outside of UK:

://www.google.com/url?sa=t&source=web&rct=j&url=https://www.behcets.org.uk/wp-content/uploads/2017/08/BPC-Referral-information-August-2017.pdf&ved=2ahUKEwjH-cXLotnhAhUCzKQKHRoFCXcQFjAFegQIBRAB&usg=AOvVaw1vt85sSW-YYKDdh1teYZft

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