Behcet's Syndrome Society
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Behcet's

Hi - I'm 17 and I was diagnosed with Behçet's Diseases last year in October I have been on prednisolone for 7 months now. I am constantly suffering with back pain and it is very difficult to move or breath with out it hurting sometime. I fractured my rib 3 years ago and the pain is still there which does not help because about 2 times a months my liver will give out fluid and will give me a burning acid felling that would go from my ribs to my back. If anybody else suffers with this I would love to know what you do to help as I don't enjoy taking pain killers.

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Be strong young lady. You will have to take a painkiller so that you can heal too. It does sound like you need to see your Dr again because the pain sounds intense. Thinking of you

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Hi Skew

I do think you need to see your Dr if you have not discussed these symptoms with them, I am pleased they have recognised the BD condition in you at a early stage in your life which I hope will enable your Dr's to help you manage your symptoms going forward which is really important as so many of us have had to self manage with no diagnosis for tens of years. The acid you feel you are burping can be helped (I have gastric issues too they are common in Behcets I have Ehlers Danlos too and this also has issues with gastric stuff as well as ribs) I also have a condition called costochondritis which causes rib and back pain as well as the feeling of restrictions in my chest which before diagnosis I thought I was having heart pains and breathing difficulties which came and then went away, apparently this condition can be mimic heart conditions including that of a heart attack if you do a quick search you'll be able to have a quick read, I do suggest you get yourself checked out too for what you are feeling. You need to make sure you are heard Skew as I and many people like us were ignored at a young age and continually through our lives with most of us only being diagnosed in our 30s 40s and 50s.

All the very best and keep us updated on how you are progressing.

Gillian

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Hi gillian TS

I went to the doctors last week about they took some bloods and my ALT can back a little high, i am getting help from my doctors and my specialist, I have put a request to be referred to the royal London hospital as they has area only for Behcet'. I will have a look at costochondritis and do a bit of researching on it. Thank you for your help

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