anyone have sjogrens?

Discussion in 'Fibromyalgia Main Forum' started by SherylS, Nov 20, 2011.

  1. SherylS

    SherylS Member

    I have chronic fatigue, but have also just developed sjogrens. Or so they think, though the tests are negative (of course). I have the dry eyes and dry mouth, but the major porblem is with my digestion. I have hardly eaten anything for two weeks because it makes my stomach hurt so bad, like it can't digest anything. It isn't too much acid--we have tried that route without anything helping. Probably not enough acid (gastroparesis). I have just started taking HCL and digestive enzymes, but haven't really noticed any improvement with them. Just wondering if anyone else has had this problem and what drugs or supplements may have helped you.

    Sheryl
  2. inbetweendays

    inbetweendays New Member

    I would try to take probiotics,digestive enzymes,a little fiber, essential fatty acids. Although, I have heard hcl supplements can make it worse. Getting your digestive track back on track is your best bet.
    yes, dry eyes and mouth are part of this syndrome. aint it great.....also look into low thyroid, low sex hormones, etc.

    also apple cider vinegar with meals may help--as well as abstaining from drinking when eating--as that will dilute digestive juices.

    you may want to try this shake if you are going to long without eating--as you dont want to not get nutrition--

    in a blender combine--whey protein powder, one banana, some fruit or nuts, goat milk, drink up.
  3. Mikie

    Mikie Moderator

    I'm so sorry you also have this nasty illness. I've had CFIDS/ME for 21 years and FMS full blown for 11 years. I had thought I'd gotten them under control and was working part time when Sjogren's made it's ugly appearance. My eye doc found it doing an osmolarity test for dry eye. The Sjogren's has attacked the oil glands in my eyelids and makes it diffiult to make tears. You can take pharmaceutical-grade fish oil caps, put a heat pack on your eyelids and massage them to help keep the oil glands working.

    For dry mouth, I chew gum to keep the salivary glands working. I also use Biotene mouthwash and digestive enzymes. The cheap papaya enzymes aren't enough. We need good quality enzymes. I also take twice the recommended dose of probiotics which help.

    The exhaustion and dry mouth were the first symptoms and I had to quit my part-time job. I can see why Venus Williams had to quit playing tennis. I have had an increase in pain in my joints as well.

    Some of us get a horrible taste in our mouths and oral sores and burning in our mouths. I still get SS flares but the onset was the worst. I fight exhaustion almost every day. Some days, I can function but I often have to lie down before I fall down. I may be able to function for a while but then crash for days on end.

    I am about to undergo peptide injections which are supposed to help with all my immune and auto-immune conditions. I'm just building my health up a bit more before investing in them (Medicare does not cover them).

    I pray for you because I know what you are going through. BTW, the only test which indicated SS were the eye test and my CRP which was sky high. My ANA was neg., not unusual in the early onset.

    Best of luck to you.

    Love, Mikie