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Yup. It's sjogrens

Posted , 11 users are following.

ally82777
ally82777

Hi, I'm back I have just been diagnosed with sjogrens and bronchiectasis. I live in a small village in Liverpool does anyone know of any support groups in the Liverpool area. And advice over work. I love my job at the moment the pain is too unbearable to go back. I'm still signed off. I've heard stress can cause symptoms to flare up. Do I go back to work or leave and concentrate on my health. Advice please xx💕💕😬😂😰😪🌸

1 like, 64 replies

64 Replies

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  • samantha1951
    samantha1951 ally82777

    Posted

    I sympathise. Sjrogens is terrible. I have dry eyes, skin, and terrible lack of saliva.

    You can chat to me if you like on 01767  691175. 

    regards Samantha.  ( SAM)

    • frustrated61
      frustrated61 samantha1951

      Posted

      Hi Sam,

      What is that number to?  I'm sorry you have sjogrens as well, it's an awful disease!  As far as your treatment, what are your doc's doing for you?

      Frustrated

  • susan88130
    susan88130 ally82777

    Posted

    hi ally - I live in Liverpool (gateacre). I have been struggling with the symtoms on sjogrens for 7 years now, I been to lots of various consultants who "labled" me with Fibromyalgia/CFS. 3 weeks ago I went to St Pauls with the symthoms of uvitis and getting treated for it, on Tuesday they gave me the blotting paper eye test and my eyes were bone dry - at last they may give me the correct diagnosis.

    I too would like a support group in Liverpool - this illness affects so much of your body - the pain, fatigue, brain fog, dry eyes,skin.

    If you want to talk pm me.

    sue 

    • ally82777
      ally82777 susan88130

      Posted

      Hi. I've not been on here for so long as I have nothing but negative things to say. I too have been diagnosed with fibromyalgia the pain I experience on a daily basis I've lost so much weight im now skeleton like , everything about my life has changed. Frustrated at the lack of care or knowledge the consultants seem to have regarding these complaints.

      The only positive thing I have to say right now is thank God for my amazing family and friends !! Sorry if I sound so defeated im not at all depressed thank god ! Just angry and frustrated by my own body. I feel like it's let me down !!!

      😷🔫

    • susan88130
      susan88130 ally82777

      Posted

      Hi - I think what you are feeling is what we have all felt. The loss of our former life - When I was well I had a job I loved, went to the gym 3 times a week, looked after my family kept all the balls in the air like most women do. Then 9 years ago WHAM everything changed - once healthy, mine started with a personal shock followed by a virus for 6 months, then pain, fatique. then it seemed every year some thing else was added, Migraine, bowel problems, eye problems the list went on.I thought why me, am I imagining all this. I went to consultant after consulant each dealing with his speciality - I got so tired of telling the same story - in the end they said Fibro/CFS  or now Sjojens.

      Unlike you I have lost so many friends with this - don't blame them really - how many times can you make plans only to the have to cancel last minute because you feel so tired you can face going out.

       I have come to the conclusion that what ever this illness is - whatever the name they want to call it - it is what it is and this is my life now. On better days I try to do things  - always trying not to do too much ( google "spoon theory" and let me know what you think)

      As to Drs, or Consultants you are right I don't know if they understand this one. I think if you have the Big Ones ie. Cancer, RH Arthritis, Heart problems etc they know how to treat it, there is back up such, Macmillian Nurses, Arthritis support, Stroke Nurses etc. Who can we turn to?

      Have they put you in touch with the Pain Management Clinic in the Walton Centre (Fazakley Hospital) I belive they are very good.

      I am still under Halton Hospital so they have a fibromyalia class and when my problems are more under control I can attend.

      U take care - look forward to your reply and comments on Spoon theory -it helped me and my family -sue

       

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