It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Sjögren's Syndrome Message Board

  • Sjogrens

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 05-04-2016, 10:53 PM   #1
    Margella
    Newbie
    (female)
     
    Margella's Avatar
     
    Join Date: May 2016
    Posts: 2
    Margella HB User
    Sjogrens

    Hi, I am new to this forum, just need people like me who understand what Sjogrens does to your life. I was diagnosed in 2000 but had no idea what was in store for me. Main problem is GPs not understanding the disease. I have just come out of hospital after a bout with pericarditis, they say nothing to do with Sjogrens but blood tests show it is very active. The fatigue and weakness are the worst, just want to get off my bum and do things but my body won't allow me. I see a rheamatologist in 10 days so am hoping he will be able to help me. Sorry for the whinges just get so tired of getting up and being knocked down again. Some of your posts have been great make me realise I am not the only one

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 09-21-2016, 02:30 PM   #2
    elainea717
    Newbie
    (female)
     
    elainea717's Avatar
     
    Join Date: Sep 2016
    Location: USA
    Posts: 2
    elainea717 HB User
    Re: Sjogrens

    Hello Margella, I am new to this just got a diagnosis of Sjogrens which is complicated by Cronic Kidney disease diagnosis. I am having the "dry" symptoms, mouth skin, eyes etc and manage those symptoms pretty well. The issue I am having trouble with is the pain in my shoulders and arms that happens at night. My blood test for Sjogrens was supposed to be 1 or under but was 5 on my first blood results. I think that I have had this for at least 30 years and just dealt with the symptoms that popped up as an annoyance. The thing that is hard for me is I can not take aleve, or advil, asprin because of the ckd. The only thing my rheumatologist said was ok to take was Tylenol Arthritis which does nothing to help with my pain. I go back for my second appointment tomorrow and am going to address the ckd and meds issue Most of the meds I find online that are effective for Sjogrens is contraindicated if you have ckd. My way of thinking at least at this point is that my kidneys are going to be the first thing I try to protect. My father in law had to have peritoneal dialysis and I am not going to go that route if I can help it. I find my triggers are sun, not enough sleep and tooth issues to cause flares. The most annoying symptom which I have seen no one address is that I seem to be "allergic" to my own sweat. I walk about 5 miles on a treadmill everyday and my hair is sopping wet when I am done. My head itches like crazy until it dries or I wash my hair. Fatigue is hard too, I am 65 but still work and there are days I can't wait to get home and go to bed. I mostly want you to know that you are NOT alone. I am new to this too, hoping we both (and anyone else out there unfortunate enough to have this disease) find our way to good doctors who are willing to let us try natural cures. The one I found most helpful was tart cherry juice. If I drink one cup a day it seems to stop the intense shoulder pain. I am and worried about the future but I am not a person to give up so it is onward !! Best wishes for you !

    Last edited by elainea717; 09-21-2016 at 02:33 PM.

     
    Reply With Quote
    Old 09-22-2016, 12:13 AM   #3
    Margella
    Newbie
    (female)
     
    Margella's Avatar
     
    Join Date: May 2016
    Posts: 2
    Margella HB User
    Talking Re: Sjogrens

    I am pleased to say I have found a wonderful rheamatologist since having septicaemia and my health has taken a big turn for the best. I have a parathyroid adenoma which the specialist picked up, so will have to have an operation. I have also been prescribed plaquinal. After 16 years with no specialist care, I feel I have hit gold and so much more positive about my future. My message to all sufferers of Sjogrens is never give up , there is a dr out there who will help just keep looking. Margella

     
    Reply With Quote
    Reply Reply

    Tags
    autoimmune disease



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 11:46 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!