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  • Rosacea? How should the swelling behave?

    Hey,

    I'm new to this Forum, but suspect I may have had Rosacea for a while without realising.
    Sorry for the long post, but I'm not getting any help from doctors and would appreciate any feedback.

    In short:
    Frequent blushing since I can remember.
    Now a fairly persistent redness across cheeks and nose.
    Over past year growing edema of face.

    My question is, is my swelling normal for Rosaceas lymphoedema sufferers ?

    It's most commonly triggered by lack of sleep, although blushing can trigger it to a less extent.
    It started out only in the upper cheeks close to nose, but now when the swelling occurs, it occurs across my entire cheeks from nose to jowls.

    I'm not too bothered by the facial redness, or the stinging, or the occasional swelling. What does concern me is that the swelling never really goes away, it has just gotten progressively worse over the past year. So has disfigured my face somewhat (to a point where a colleague from a year ago didn't recognise me when I met her).
    Is rosacea swelling supposed to be permanent like this?

    Also, the swelling has spread to my lips, underneath my chin, and deep inside my neck.
    My lower lip consistently swollen to the point where my mouth hangs open a bit if I relax my face.

    What worries me most is that the fluid from the swelling has settled around my windpipe. It's become more difficult to breathe, and swallowing can be painful.
    My trachea now visible protrudes from my neck where the swelling is pushing it forward.

    As I haven't come across these kind of problems (especially the neck thing) in this forum, I just wondered if anyone else has had similar problems, and if this is a normal issue for Rosacea sufferers.


    Thanks in advance

    Dave


    P.S. before anyone mentions allergy-induced angioedema, I often take courses of antihistamines to no effect, and have also tried elimination diets (a few weeks on just meat and green veg), also to no effect.
    Last edited by dy213; 22 July 2015, 06:44 PM.

  • #2
    Originally posted by dy213 View Post
    Hey,

    I'm new to this Forum, but suspect I may have had Rosacea for a while without realising.
    Sorry for the long post, but I'm not getting any help from doctors and would appreciate any feedback.

    In short:
    Frequent blushing since I can remember.
    Now a fairly persistent redness across cheeks and nose.
    Over past year growing edema of face.

    My question is, is my swelling normal for Rosaceas lymphoedema sufferers ?

    It's most commonly triggered by lack of sleep, although blushing can trigger it to a less extent.
    It started out only in the upper cheeks close to nose, but now when the swelling occurs, it occurs across my entire cheeks from nose to jowls.

    I'm not too bothered by the facial redness, or the stinging, or the occasional swelling. What does concern me is that the swelling never really goes away, it has just gotten progressively worse over the past year. So has disfigured my face somewhat (to a point where a colleague from a year ago didn't recognise me when I met her).
    Is rosacea swelling supposed to be permanent like this?

    Also, the swelling has spread to my lips, underneath my chin, and deep inside my neck.
    My lower lip consistently swollen to the point where my mouth hangs open a bit if I relax my face.

    What worries me most is that the fluid from the swelling has settled around my windpipe. It's become more difficult to breathe, and swallowing can be painful.
    My trachea now visible protrudes from my neck where the swelling is pushing it forward.

    As I haven't come across these kind of problems (especially the neck thing) in this forum, I just wondered if anyone else has had similar problems, and if this is a normal issue for Rosacea sufferers.


    Thanks in advance

    Dave


    P.S. before anyone mentions allergy-induced angioedema, I often take courses of antihistamines to no effect, and have also tried elimination diets (a few weeks on just meat and green veg), also to no effect.
    Dear Dave, there are many experts on here - and I am not yet one of them - but what is clear to me is that you must demand proper medical diagnosis and care. Where are you based?

    Comment


    • #3
      Originally posted by dy213 View Post
      Hey,

      I'm new to this Forum, but suspect I may have had Rosacea for a while without realising.
      Sorry for the long post, but I'm not getting any help from doctors and would appreciate any feedback.

      In short:
      Frequent blushing since I can remember.
      Now a fairly persistent redness across cheeks and nose.
      Over past year growing edema of face.

      My question is, is my swelling normal for Rosaceas lymphoedema sufferers ?

      It's most commonly triggered by lack of sleep, although blushing can trigger it to a less extent.
      It started out only in the upper cheeks close to nose, but now when the swelling occurs, it occurs across my entire cheeks from nose to jowls.

      I'm not too bothered by the facial redness, or the stinging, or the occasional swelling. What does concern me is that the swelling never really goes away, it has just gotten progressively worse over the past year. So has disfigured my face somewhat (to a point where a colleague from a year ago didn't recognise me when I met her).
      Is rosacea swelling supposed to be permanent like this?

      Also, the swelling has spread to my lips, underneath my chin, and deep inside my neck.
      My lower lip consistently swollen to the point where my mouth hangs open a bit if I relax my face.

      What worries me most is that the fluid from the swelling has settled around my windpipe. It's become more difficult to breathe, and swallowing can be painful.
      My trachea now visible protrudes from my neck where the swelling is pushing it forward.

      As I haven't come across these kind of problems (especially the neck thing) in this forum, I just wondered if anyone else has had similar problems, and if this is a normal issue for Rosacea sufferers.


      Thanks in advance

      Dave


      P.S. before anyone mentions allergy-induced angioedema, I often take courses of antihistamines to no effect, and have also tried elimination diets (a few weeks on just meat and green veg), also to no effect.
      Hi dy, John from Ireland here, welcome to the forum, it sounds like you have a severe rosacea and rhinophyma, it's part of rosacea that affects the nose and you really need to see a dermatologist that will refer you possibly to a plastic surgeon before things really get out of hand, I don't want to scare you, but you have to look into getting some proper treatment for everything you have said in your message, as soon as possible I say,your doctor is the first place you go, and tell him everything you have said on your post and make him listen, best of luck dy,take care, Regards john.

      Comment


      • #4
        Thanks for the quick reply

        I'm 26 and live in the UK.
        I've visited a couple of GPs here within the NHS.
        Both said I didn't have Rosacea, and based this on the fact that I don't have visible blood vessels (though recently these have started to appear).
        I generally don't get much swelling on the nose, mainly the cheeks.

        I'll certainly take your advice to try and see a specialist, but that will take a month or more (2 weeks waiting time to see GP, then 1-3 weeks for a dermatologist) so was hoping to get any other info I could from people who may have had similar experiences.

        Comment


        • #5
          Hi xxx

          Sounds pretty horrific, and I'm worried because each outbreak I've had 6 so far in a row have has been worse than the last
          Swelling showed up last time ( this is NEW for me)
          I've looked it up and I'm afraid I've read that with Rosacia with chronic swelling, it is the type with Rhinophyma
          So yes, if that is true it will be worst case
          I'd be grateful if you could detail your early swellings, at first, but with severe all over the cheeks swelling and right temple, so early on I'm bound to end up with exactly what you have. Even great people have facial disformity.i saw a video of a beautiful young woman with Rhynophyma and that keeps me going because you can still see the person. Okay so people at the bus stop will look at me sideways but I'm married and happy

          Comment


          • #6
            Early swelling

            Hi Clouddog,

            Sorry to hear your concerns.
            For me, the swelling started across my upper cheekbones, and then gradually spread across my cheeks and now involves my lips and chin as well.
            Bear in mind, I haven't been diagnosed with Rosacea yet, but pretty much all areas affected by swelling are also persistently red.

            Comment

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