help please

[bubble1975]

hi I have been diagnosed with Behçet’s disease which I had never heard of before. Waiting now to see a further consultant. Any help or advice on this would be great I.e is there any I can do to stop it flaring up! Also what has everyone been told about this disease thank you ❤️

[Thamy]

Hello @bubble1975

,

when I found out about Behçet's, a lot of bad situations I’ve been through since my childhood started to make a lot of sense to me, but because of a emergency surgery I did in my late twenties, I’m on two and a half years with a endless Behçet flare, even trying hard to eat healthy doesn’t decrease or alleviate the pain, only taking colchicine, cyclobenzaprine, MTX, and corticosteroids my life can keep going.

I apologize for the harsh storyline, if in the beginning I knew what was about to come, my mental health would be healthier, and I wouldn’t fight against so many things to fool myself to believe that I was capable of winning this battle on my own.

But I know some people with Behçet diagnoses that never has had any major trauma to the body thus their flares are rare.

Also anxiety, stress and any other mental health problems can trigger the flares.

My sincerely advice to you is to try be in a positive and supportive environment, with people whom can assist you in difficult moments.

My story is not your story.

I hope you can tell a better one to the next person diagnosed with Behçet's with no clue of what expect.

Best Regards,

Thamy.

[UKADMIN Partner Behcet's Syndrome Society]

Hi, It must be very overwhelming to receive the diagnosis, but we have lots of info available on the Behçet’s UK website you may find helpful such as free medical factsheets: behcetsuk.org/behcets-medic... We also have a guide for employers and a guide for those who are wanting to start/get back into employment: behcetsuk.org/behcets-and-e...

If you need to speak to someone we have a Helpline run by volunteers – details are available here: behcetsuk.org/helpline/ They cannot give medical advice but can provide a 'listening ear'.

You may be interested in becoming a member of Behçet’s UK. Some of the benefits include a patient alert card and quarterly newsletters. You can find out more and sign up here: behcetsuk.org/how-to-join/

If there’s anything else we can help with, feel free to email us at [e-mail]

[Ayea]

Hi There,

You will find a wealth of information about Behcets on the Behcets UK website -> behcetsuk.org/

My understanding of Behcets (derived from lots of reading of forums, research etc)...

Behcets varies a lot from patient to patient. For some people it is severe and debilitating and involves lots of co-morbidities that make life very difficult. For some it's less severe and amounts to having to put up with periodic ulcers, skin issues, eye issues and joint pain.

Some people are lucky and go into remission and apparently the disease tends to get less severe as you get older (although that is not the case with me so far).

Personally, medication has helped to bring most of my symptoms under control except the joint aches and the fatigue, which I have pretty much all the time. I think this is pretty typical for a Behcets patient.

In terms of flares, each patient has their own set of triggers, but the one that seems to be universally agreed upon is STRESS! Avoiding stress is easier said than done, but I personally notice that when I'm on holiday somewhere beautiful with all my troubles and cares left behind me for a while, I feel SO much better :0)

My personal watch list:

Avoid too much sugar or alcohol - these cause inflammation and make Behcets worse and can trigger a full on flare... a little is OK, too much BAD... you have to learn your limits here.

Too much OR too little exercise... exercise and physical activity is essential to get the blood flowing and keep all the joints moving, but over do it and I personally wake up feeling like I've been in a fight with a grizzly bear! I do something every day, even if it's just a walk. Favourite exercise is swimming, cycling and yoga as they are all low impact but mobilise all the muscles and joints.

Avoid isolation. Keep challenging yourself. Rest when needed.

Good luck, I hope the Behcets is quickly brought under control for you!

[Icefire]

Hi Bubble, Sorry to hear about your diagnosis.

I am one of the lucky ones who can mostly manage it with diet and lifestyle. I try to keep rice, potato, pasta, sugar low and veg high. Fruit occasionally/ in moderation after exercise. Pulses, nuts, meat, fish, cheese all OK. I try to keep blood glucose levels fairly steady. (See glucose goddess and Zoe Nutrition podcast for further guidance).

Being fit helps but you need to build it gradually.

I've had terrible ulcers in past plus joint swelling, erythema nodosum and bilateral uveitis. So whilst not the worst I have been badly effected at times.

I live a relatively normal life now. I might get fatigued quicker than others in party Season.

Hope this helps.

X