litchen scleroses

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Hi i am quite recently diagnosed with litchen scleroses and i am getting obssessed with finding out about it, quite frankly i am a little scared becuase it seems i have so little control over what happens to my body.  I am using dermovate and it does help but the symptoms return as soon as i stop.  Can anyone recommend anything other than a steroid and did anyone find that adjusting their diet helped. Apart from my husband i havent even told anyone because it seems so personal.

Jackie

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  • Posted

    Hi Jackie, sorry to hear you have this condition. I too have only recently been diagnosed and have told no one except my husband and I have no intention of doing so. I had enough of an issue talking to my husband as about this condition as it made me feel so overwhelmed, out of control, unfeminine and old. I am late 50's. It's quite hard to get a handle on it and there does seem to be very little research done. There is a lot of scary stuff and I don't look at any pics. I am trying to be positive and do what I can to keep it from flaring up again. Hope you have found a way to control your symptoms. Mary
    • Posted

      Hello Mary I have just read your sad message. Late 50's is in fact the new late 40's When life starts anew.... We are all so much younger in thought and outlook than our parents at the same age. So "Old" at 50? nah!!! If you can go out and get yourself fit or fitter....Gym, walking groups or solitary stuff.I cant swim the chemical affect me but others can without difficulty. the endorphins created by exercise make you feel so much better as well as the firming up of those tiresome floppy places. As to feminity, well what I did is have a makeover. I was approached in a store to have a new hair do make up and a photo shoot. the results were such NO ONE believed the pictures were not  photo shopped...Nor did they believe the pics were of me. (When I got home I took selfies on the computer and much was to do with the lighting in the studio that made me look so glamerous - I was 65+)

      So go out and have a fun day- laugh a lot -and boy will you be the sexy feminine person you were before you had The Itch. I went on my own  because I was a hundred or so miles away from my social network, but the change of hair style make up and a weeny bit of retail therapy did make me feel so much better about myself.

      I have also found laugh and the world does laugh with you, and I keep my tears to myself - but  recently they have disappeared too.

      When I started a management course many years ago I was told of the cheese and the mouse, and how a huge lump of cheese (the Big problem to be faced) could be nibbled away over time to make cheddar into gruyere- thus more managable to tackle

      Take heart

       Best wishes  Sue

      PS You   HAVE  managed to tell someone other than your husband - us - and that was very brave and a first step to gaining control

    • Posted

      PPS I forgot to say re the nibbling away at the cheese - tackle or face one issue at a time. Don't try and get  the whole cheese eaten in one day - you will get indigestion. Look for the tastiest ( easiest ) piece to nibble. Being an ostrich too has its advantages....but THAT is another analogy!!
    • Posted

      Thanks Mary i am with Sue on this one.  I am 57 and still feel like i am in my forties,  I play netball go the the gym and do yoga and pilates thats as well as looking after 3 grandchildren. Its hard but i am determined i am going to control this condition and not let it control me. Much love xx
    • Posted

      yes do take heart mary....thinking of you warmly.

      love marey xxxxxxxxxxxxxxxxxxxxx

    • Posted

      it was so nice of you to reply in such an encouraging way to jackie when she put herself forward. you have come forward bravely too and we are right behind you....aren't we girls?

      please don't feel overwhelmed or alone anymore.

      huge hug marey xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  • Posted

    Thank you Sue its so nice to hear positive ladies out there, it stops me feeling its all doom and gloom.  We can have happy healthy lives with this inconvenience!!
    • Posted

      Also it can be amusing to try and find ways to Do The Itch Dance in public...I find that when it is THE most embarrassing or awkward The Itch reappears, and  the bodily contortions needed to relieve the Itch - and not to be like men who seemingly have NO inhibitions about scratching where they like as often as they like - would make interesting watching!

      Keep smiling and look for half full glasses not half empty ones

      Sue

       

    • Posted

      Love to you too Jackie....can you visualise sue d doing her moves!! The itch dance in public...hope she 's cheered you up as much as me!! Tee Hee...........

      Marey xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

      hello sue...how do you do...made me think of ab fab ....you know the one where they mock the males and end up mating with the TV as far as I remember!! xxxxxxxxxxxxxxxxxxxxxxxxxxxx

    • Posted

      Cheered me up to, just knowing ive someone to whinge to helps me loads. Think we should all do the itch dance we could start a trend.

      xx

    • Posted

      you tell me your movements and i will tell you mine!!!

      Whinge away whenever you feel a whinge coming on

      Sue

      Maybe we can recognise each other while out shopping or gadding...?

    • Posted

      see what you've started here sue and jackie....its quite infectious!!
    • Posted

      thanks for agreeing to  let me whinge, not sure about mareys idea about the itch dance in clogs though!!

       

    • Posted

      I agree...perhaps more elegance is required- while WE KNOW what relief it gives should  the whole world know what we are about? I think not!
  • Posted

    I love it...! Brilliant...the itch dance in wheelies or clogs!!
    • Posted

      Your replies about itch dance has put a smile on my face although I have been itch free since February after 12 years of finding a corner in a shop etc to have a scratch so know one could see me. Its true some men have no inhibitions when they need to scratch. I try and tell women about LS if possible especially ladies who work at my chemist have never heard of it then maybe if they are suffering as well can get help and not always think they have thrush or its old age as I did. Need posters in doctors waiting rooms or ladies mags like adverts for other ladies health problems .
    • Posted

      EXACTLY...couldn't agree more! How do we get such a campaign going?

      i'm looking for folk to team up with in the cure process....i know much of the theory and a path lies before me but its the motivation factor....taking my omega 3 protected krill oil supplements and the whole regimen...groan! well done you for keeping at it with your methodology... have you got a regime going? care to share? well done for being itch free...i was after giving up grains but am not keeping to the next level....am much improved but not there yet...how are you doing?

    • Posted

      PS Credit for the itch dance (brill!) goes to sue d.m   xxxxxxxxxxxxxx
    • Posted

      hello again holiday....just looked back to your previous posts and note you're following the steroid route....glad you've found your way.

      does dermovate have another name? can you remind me? 

    • Posted

      first glance thought you were recommending a corner shop but ah ha the corner of any shop...oh yessssssssssssssssssssssssssssssssssssssssssssssssssssssssss relief....whilst of course the folks on cctv  control will be having a giggle at us!!
    • Posted

      Yes please share,  i have taken Sues advise and got cmo and celedrin so i may be able to use the dermovate spareingly,  grap any advise i can. Even if im not itching i imagine i am is that crazy???
    • Posted

      Another way to combat The Itch is to scratch another part of your anatomy believing you are sorting out the offending part....It CAN work - well most of the time. ...OK Some of the time That way no harm is done to the offending area
    • Posted

      that is inspired ...transfer of itching! I like it!!

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