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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

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  • frustrated61
    frustrated61 ally82777

    Posted

    Stress can definitely make the symptoms worse...I  just got out of the hospital from a 3 day stint/...thought it was a heart attack and  happily it's "only" stress LOL...I wish I could help you regarding the help group but if you keep coming back and sharing what you're going through it just may help you and others.  This place is a wealth of knowledge.  I find most of us who have an autoimmune disease that's realtively new, have to look for information on their own...an advocate of oneself...I'd say.  Just hang around and ask questions and answer them and you just may not have to get out and find a group ...because there is one here right before your eyes!  Hope you feel better!

    warmly,

    frustrated

  • Sue1247
    Sue1247 ally82777

    Posted

    I've had sjogrens all my life but only diagnosed in 2005.  I held down a full time job and I'm glad I didn't know I had sjogrens as I would have worried.  My advice would be to get as much rest as you can and learn to put yourself first.  Say no if you feel you don't want to do something.  I'm sure it will all settle down in time.  I found Simba tablets from the Little Herbal Company very effective with fatigue and my general health.  My bloods are good with only slightly raised ESR' s but do take care of your eyes and mouth.  I've found I've had several issues with both as I've got older.  Try to get on with your life .  Its really not so bad once you understand what's going on.  Try to keep moving and do some gentle exercise like Pilates or yoga and take all refined and processed foods from your diet.  Some people are helped by a gluten free or dairy free diet.  You could see how this affects you.  
    • frustrated61
      frustrated61 Sue1247

      Posted

      Hi Sue and ally ~

      Just to clear any confusion, everyone carries sarcoidosis and sjogrens ( I have both...unfortunately) but our bodies carry so many different diseases that most stay dorment and one will never get any of them.  Some, do and it goes away and that particular person never had a clue...other's hold on to it for a while but they are treated and it goes away.  However, some get it stays with them throughout their lifetime.  Some have different levels 1-4. One is allowing some to pretty much carry on as normal...2-3 levels  aren't quite as lucky and any kind of exercising/yoga etc...triggers the nerves and they become inflammed causing another episode. Level 4 and speaking from experience, any of the above can cause quite painful consequences. It can trigger an asthma attack along with triggering inflammation throughout the body.  But the bottom line...sjogren SUX!

    • ally82777
      ally82777 Sue1247

      Posted

      😪hi sue. I have been doing yoga now for about 18 months but have been unable to practice for about the last four months. The fatigue is horrendous the pain in my legs n back unbearable. But I am positive. I will be back. Thank you for your advice. I will try anything 😘😘
    • ally82777
      ally82777 frustrated61

      Posted

      😫😩 it does it really does suc 😫😪😩
    • frustrated61
      frustrated61 ally82777

      Posted

      allie ~ I'm happy that this forum is available for reasons like this.  I honestly have gone through 9 years with sarcoidosis and no place to vent my concerns.  I can't even remember how I came upon this site, but it's all good for me.  Ally, I do know one day (hopefully sooner than later) there will be something to possibly help us or even make us go into remisson...either way is good to me.  Hugss to you for all you're going through.

      frustrated

    • frustrated61
      frustrated61 Sue1247

      Posted

      Hi Sue ~

      You mentioned you've had sjogrens your whole life.  What have the doctors done for you in regards to your eyes?  I just curious because I was dx'd in 2012.  I'm sorry you've gone so long w/o any help until 2005; that must have been horriible for you!

      frustrated

    • frustrated61
      frustrated61 ally82777

      Posted

      I sure miss yoga..before my accident, I would walk 20 miles a week with one of my friends, I'd do yoga 2 nights a week; we were only beginners but still had benefits of those who had more than "beginner level. In addition, I'd walk 15-20 miles three days a week with a good friend.  I also did some jazzersize which I usually took my youngest with me...she also went to yoga as well. 

      Anyway, all that was done after I made dinner and cleaned up and also after a long day at work.  I was pushing myself but  I loved being busy.  After the accident, everything stopped....everything. I was afraid of getting bitter and turn into one of those little old bitties (hehe) who all they did was complain.  That, to me, was a challenge and OHHH do I love a challenge (I love challenging myself).  I like to challenge myself because it reminds me that I'm here no matter what holds me down...I'm still here. 

      This forum or any of the hundreds of forums here is exactly what I need, a place to vent.  A  place to write to those who are suffering as I was/am.  A place to find something that can make  me  happy...and the truth of it, this place does make me happy to talk freely and hopefully no one judges.  Those tired years to me have never stopped.  Does anyone have a remedy to combat tiredness? There may be an answer with your doctor, if they don't help, get someone who does, right?

      I wish you luck

      frustrated

  • charles79548
    charles79548 ally82777

    Posted

    Hi, I was diagnosed with Sjogrens Syndome in 2010 after developing dry eyes dry mouth lost smell  lost taste and felt like I had a really bad case of the flu for two years, before my diagnosis. Eventally after seeing a Holististic Doctor all that cleared except the dry eys. Now and this started in May 2013 I have developed a breathing difficiculty with what feels like pain in my right bronchial tube and I do cough up phlegm daily its not a dry cough. Tell me please do you have pain in bronchial tubes and difficult breathing and do you have a dry or wet cough. I have been to three Pulmonoligist, but none of them have been able to diagnose my bronchial tube pain and breathing difficulty. I was a Houston Police Officer and retired in 2006 after 25 years, but if I felt like it and had the energy I would go back to work, but I can't due to my health. I stay home all the time and I am unable to do anything outside due to my breathing being so bad. If I were you and I felt like it and had the energy I would still work, but if you can't handle not having the energy to work then stop and focus on your health.  Please tell me how you got your Doctor to diagnose the bronchiectasis. Is you cough dry or wet.
    • ally82777
      ally82777 charles79548

      Posted

      Hi Charles. 

      Ask for a ct scan , that is how mine was picked up. I am very short of breath and a very dry cough yes to coughing up too. Please visit your dr. Ask for a ct scan. 

      Sending love. I already hate this disease xxx😘

  • charles79548
    charles79548 ally82777

    Posted

    Yes ally I have had ct scans and they say they are clear they cant find anything wrong. Before I was diagnosed with Sjogrens Syndrome it took me about 2 1/2 years to get a diagnosis. Do I understand you to say that yes you do cough up phlegm or its just a dry cough. I also have a constant sore throat that I have been going to a ENT Dr for. 
    • ally82777
      ally82777 charles79548

      Posted

      Hi Charles. I had re occurring chest infections very similar to pneumonia on n off for years ,, now just a very weak chest. Cough up phloem and a dry cough yes x
  • babycham
    babycham ally82777

    Posted

    Hiya Ally, I do not know any support groups in your area sorry. I Must also say you bring a  smile saying you come from Liverpool. I am just a little footie mad & Liverpool is our team (four of us). Getting back to it , I do understand your dilemma though, as I am going through the same. I had a lip biopsy on Friday which was fine, I don't mind all that .I am just hoping three weeks goes quickly for the results.Can't you not make any decision's yet and it gives you time to focus on you. Also are you p/t at work? How did you find out? 
  • babycham
    babycham ally82777

    Posted

    Hiya Ally, I do not know any support groups in your area sorry. I Must also say you bring a  smile saying you come from Liverpool. I am just a little footie mad & Liverpool is our team (four of us). Getting back to it , I do understand your dilemma though, as I am going through the same. I had a lip biopsy on Friday which was fine, I don't mind all that .I am just hoping three weeks goes quickly for the results.Can't you not make any decision's yet and it gives you time to focus on you. Also are you p/t at work? How did you find out? 
    • ally82777
      ally82777 babycham

      Posted

      Hi. I found out on Friday they just wanted me to be tested for Addison's as I have so much pigmentation on my gums ,, tested negative ! 

      And no ,, it's not bronchitis ,,, I honestly done know too much about it. Waiting for my appointment to see chest dr n yup. I'm defo going to take my time before I make any decisions. At the moment I'm full time n signed off. 

      Also footy mad. But a blue through n through haha 😄😄😄😄😄 xx

    • frustrated61
      frustrated61 babycham

      Posted

      Hi Babycham ~

      You mentioned you had a biopsy on your lip, may I ask what did you see to warrent a biopsy?  I have something just inside the lip; you can't see it unless I turn my lips down a bit.  That something was huge and nasty then it toned down and now it's hard. 

      I hope your results are good and you can proceed with life, right?

      <3

      frustrated>

      frustrated>

    • babycham
      babycham frustrated61

      Posted

      Hi, I had saliva glands taken out of the inside of my lip to test on for sjogrens, with stitch. I have had silicon plugs in my eyes in the tear ducts. The eye specialist was saying i will have to see several doctors to keep on top of everything. Also that when I see rheumatologist they will look to see what's it secondary to!. So It seems they've already made up minds I have it.
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