New and Relieved to finally find help!

Clo

Hi
I am Chloe and I'm 32 recently diagnosed with Inflammatory Arthritus and after nearly 12 years of painful flares and battles between gp's I've officially been diagnosed with Behcets Syndrome.

I found this website in hope to make some online friends, or at least find a community of people who knows how isolating these conditions can be?! I am just coming to terms with how I need to start being kind to my body, as recently I have just come out of the biggest flare of my life. I was admitted to hospital for 7 days due to my gp's lack of care but now I am underneath specialists who really listen.

Im not sure what to expect on here but I hope to write to people in similar situations or even if you aren't it's just nice not to feel alone. As you can be surrounded by so much support but sometimes it just takes that empathetic understanding from someone who has what you have to really understand.

I hope to write and say hi to some of you soon

Thanks

Chloe

[Deleted User]

Hi and welcome to the forums,you will find many on here with 'a good ear' and advice,if you require any help using the site - just ask.
Al

dreamdaisy

Hello, I have heard of Bechet's but do not know much about it: I presume it's on the auto-immune inflammatory spectrum so as such will be hard for a GP to either recognise or deal with. GPs know a little about a lot which does not qualify them for specialist care for particular conditions, we definitely need those who know a lot about a little. I have psoriatic arthritis (PsA) and osteoarthritis, my rheumatologist ignores the latter and whatever GP I see the former. I find it hard to ignore either but I certainly don't give them the attention they feel they deserve, I regard them as tantrumming toddlers.

I was born with auto-immune issues so the PsA was no great surprise unlike the OA diagnosis, my ignorance was such that I thought that once you had one you were done. I am in my twenty-second year of it all (I am now 59) and it has not isolated me, I won't let it. I keep up with friends, if I know I am going out at the weekend (or any other time) I spend the days leading up to the event preparing by resting more to conserve my scarce energies. I have changed the way I do things over the years but I appreciate things are very different for the youth of today than when I was your age: the internet hadn't been invented, let alone mobile phones. Imagine that, people living without life's essentials . . .

I have always had to listen to my very faulty body but I will not allow my conditions to dictate as much as they could to how I live my life. I had a day out yesterday, today is payback but I knew that would be the case and will place myself accordingly. It's amusing me listening to my healthy but ageing friends discovering and learning about payback, they cannot understand why they can no longer do with ease that which they always have. Twerps. DD

stickywicket

Hello Chloe and welcome from me too.

You are quite right about our conditions isolating us somewhat and people not understanding. It can be good to just let off steam here when things get too much from time to time. We might all have different types of arthritic diseases but the pain and lack of understanding is common to all.

I'm not surprised your docs found it hard to diagnose you. Behcets is very uncommon (only about 2,000 people in all the uk have it) though you can read up quite a bit about it on here https://www.versusarthritis.org/about-arthritis/conditions/behcets-syndrome/ . We don't get many people on here with it (I guess we wouldn't with it being so uncommon ) but you can have a look at previous threads https://tinyurl.com/yaywqxxm . Possibly, if you start a new thread on Living With Arthritis entitled 'Any other Behcets people? Someone might answer. Quite a few people no longer post but still look in on the main forums.

There is a Behcets Society in UK and they seem to have a lot of info on their website https://behcets.org.uk/aboutus/
In any case, we are all here and will help however we can.