Worried

Hi all, my daughter has a diagnosis of behcets she will be 21 in May, she is coping really well up to now in her third year of uni, she now has costochondral junction syndrome.  Is this connected to behcets or is it something else? I am struggling a bit at the mo she is the youngest of my three children and I feel abit of a failure as I don't know what to do to help her apart from being there and loving her. Has anyone any answers?? This behcets does seem a bit sh**e I would really welcome any help etc I am struggling. Thanks

5 Replies

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  • Where are you in the world?

    In fact I suspect she has simple Costochondritis - inflammation of the tissue between the rib joints.

    the key word there is inflammation, and the curse of Behcets is that any small blood vessel can become inflamed and there is no where we do not have small blood vessels....

    The best gift you can give her is belief - believe her when she  looks well but says she feels grim - believe her when she says her knee hurts one hour and then her elbow the next - this post says it all

    livingwithbehcets.blogspot....

    There is a lot of support available on facebook - and you can always message me if you wish - I know all to well the heartbreak of being the mother of a Child with BD

  • What wisdom your have replied to praline107(Amanda)

    Unfortunately she will have different inflammation affect different parts of her body. Continue to be there for her. 

    Having aches and pains come and go , worring whether it's the beginning of a flare. Believing her , listening to her and being there for her. There is no love like a mothers love and your understanding and support is the best medication she will always have. 

  • My worst flares were in college. It's a lot with the studying and multitasking. Encourage rest and a balanced diet and clean. I had a lot of troubles with costochondritis as well, but I was so prone to bronchitis, so not sure if the coughing brought it on, or it was something that was underlying. You are  not a failure as a momma. My mother feels horrible for me sometimes and it's just one of those things that you cant do anything about. You can however be understanding, and help plan life things. I got so much better after college... college was terrible. Constant ulcers, slept for days, missed most my classes, joint pain, meningitis...always around finals. 

    Good luck- diet and rest are going to do wonders- encourage it!

  • Hi

    Sorry to hear your daughter is struggling but don't beat yourself up - just believing her and in her will help.

    having things moving around is classic behcets and can make one feel a bit of a complainer. Prof Fortune at London CO said things moving around is classic behcets and can make it hard for drs to deal with as it doesn't fit usuasualboxes.

    I had behcets at uni but did not know it at the time. I was in hospital with pancreatitis and menigitis etc but still did well in my degree. It was only after 25 years I got my diagnosis. The most important thing is to still have belief you can do things.

    30 years later my  Behcets has given me some bad flares over the years is bad again and I am just finalizing my PhD, so it doesn;t have to hold you back too much in life although it is necessary to make a few adjustments to ones expectation at times.

    Just being a non judgemental support to your daughter is the best thing you can do. Sounds as though you are doing a good job.

    Kind regards,

    Sian

  • I was diagnosed 2 weeks ago, and about 8/9 years ago I went through a phase of suffering from chostochronditis on and off for a couple of years, and then it went away - replaced by other symotoms.