Hi, Im 25 and jst been diagnosed with hughes syndrome, I had multiple PEs and DVT and am under the heamophila clinic at st

thomas hospital, I already have Chrons diease aswell. They havent really told me what it is, or what it means jst that i have to be on blood thinners for the rest of my life, (clexanine as i didnt absorbe the warfin probably due to my chrons) Jst wondered if anyone could give me more information what it is and symtoms and stuff also can they treat the acutal diesese rather then jst give me blood thinners to prevent other stuff. as i feel really tired all the time my legs ache, its not blood clot pain its like musle aches, and my chrons is stable atm so it must be to do with this and the drs just havent really gave me any answers. Im 25 and live to work as i havent got any energy to do anything else! Its all been going on for bout 8mths now and i jst dont seem to be feeling any better.

Thanks

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  • Hi hon

    Welcome and good to meet you. I'm so sorry to hear you feeling so poorly.

    I'm pleased you under the care of st thomas's and have a diagnosis.

    You have come to the right place for support and info.

    Sounds like you are on the track regarding treatment, standard treatment after clotting is warfarin or as in your case clexane injections.

    Have a read through some blogs n questions, lots of subjects covered.

    Another great source of info is hughes-syndrome.org

    The symptoms you are describing will sound familiar to many of us on here!

    Some of us have other autoimmune conditions too, there are meds that can help with fatigue and pain.

    Most importantly I know its bewildering at first but with treatment it can be managed and you are not alone. Always here,

    take care gentle hugs sheena xxxxxxx :-) :-) :-)

  • Hello there and welcome, there is a wealth of information from the Hughes Sydrome Foundation itself and also a large amount of members on here asking questions, giving blogs, such as yourself and contributing answers and experiences themselves.. Like yourself many of us have more than one condition. I hope you feel well supported via this forum. Mary F x

  • Thanks for your help, Ive got another appointment sent up for december anyway so il write me questions down and ask then.

    Thanks again x

  • hi nik welcome, sounds like your off to a good start, jess, mary great advise . i have been on site maybe 3 months or more ?????. always a good set of ears here.. e well jet

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