Discussion in 'Fibromyalgia Main Forum' started by Fibrolady37, May 20, 2006.

  1. Fibrolady37

    Fibrolady37 New Member

    I was dx with sygrens syndrome in march 04 & i really need to chat to some one who has it.
    So that we can share tips,advice etc.etc.
  2. Jo29

    Jo29 New Member

    I have been diagnosed with "possible" Sjogrens. I don't know if I can be much help.

    Maybe we can help each other.

    I know the main problem I have is the very dry eyes and I have a lot of trouble swallowing sometimes.

  3. sjogrens

    sjogrens New Member

    Hello, I have sjogren's syndrome and hms and fibromyalgia. Ask me anything.
  4. Ranigar

    Ranigar Member

    In Jan. but not from bloodwork. I had a lip biopsy.It came as an offhand comment from about my 5th specialist who was searching for anything to come to a dx.He said is your mouth so dry you have to carry water around with you.Speechless I reached down in my purse and pulled out a bottle of water.FM took another referral to dx.So many symtoms overlap I have a hard time figuring out what problem is from what.Slowly though I'm learning to make adjustments and see what helps and what doesn't.Ask away and I'll be glad to give you my limited knowledge.Nu.1 I read like 5 books on it.
  5. Fibrolady37

    Fibrolady37 New Member

    i went to see my doctor & i told him i had dry eyes & a very dry mouth & i said my skin was really dry & flaky.
    I also have very itchy eyes theyre so sore & i cant get any relief.
    I also started feeling a very different pain than my rheumatic pain it cripples me.
    My doctor sat & listened & said you have sygrens syndrome.
    I also have 39 other illnesses & im going to be dx in a week with arthritis it really cant get any worse.
    My rheumatologist did a test to see if i produced my own tears he put a stick in my eye it was really uncomfortable.
    And he gave me a score out of either 5 or 6 & said your score is the highest it can be so you definetely have sygrens syndrome.
    I use eye drops every day & i drink 2 litres of water a day to try & make my mouth less dry but it doesnt work.
    Id like to keep in touch with you & will you let me know if you have sygrens?
  6. Fibrolady37

    Fibrolady37 New Member

    hi what is hms?
    You know when you went to see your rheumatologist & he did the test to see if you can produce your own tears what was your score?
    Mine was the highest it could be.
    I have me,cfs,fms,ibs,myofacial pain syndrome,restless leg syndrome,asthma,allergic rhinitis,blurred vision,severe depression & i have 30 other illnesses.
    Im so glad you replied as ive never talked to anyone with sygrens.
    Will you keep in touch with me?
    We can help each other.
  7. Fibrolady37

    Fibrolady37 New Member

    hi thanks for your reply its good to hear from you.
    Which books have you read?
    I wrote to the sygrens syndrome association & they sent me lots of leaflets describing what sygrens is & they sent me a book list i bought a book off them.
    Id like to keep in touch with you if thats ok?
    Take care.
  8. Ranigar

    Ranigar Member

    Today has been a very bad fibro fog day so I've forgotten where all my books are but two I found are Sjogren's Syndrome Suurvival guide and a Body Out Of Balance.Two meds I'm on that have just started to help are Evoxac to help produce moisture and Plaqunel{sp?] which is an antimalarial drug but helps with the exhaustion.It took months to start working but it has helped lately at least some.You 've certainly got a lot to deal with.I wish you well and look forward to hearing about your personal journey.You sound like a strong women.
  9. lana33

    lana33 New Member

    I was diagnosed with ss in 2004 also. I also have Rheumatoid arthritis. I sometimes can't tell what I am having pain from or symptoms from.

    I also have to carry water and have the dry eyes. If I become anxious, my mouth completely dries up and I cant talk unless I drink some water.

    My skin is so dry and I sometimes have strange rashes or discoloration that comes and goes. I stay in pain either from the ss, ra, or fm. As I said sometimes I cannot tell.

    I will answer anything I can. Just ask me.

  10. Fibrolady37

    Fibrolady37 New Member

    You are so kind thank you.
    After i read your reply i burst into tears because youre so kind.
    Its so hard when im tired all the time & im in crippling pain 24/7 i dont have a life i exist from day to day.
    I am a very strong lady who has always gets back up when im down but ti be honest ive got so many different illnesses & varying symptoms ive had enough.
    I cant even move without crying coz im in such pain.My daughter is 12 & i love her more than anything.
    She keeps me going & shes used to seeing me in tears.
    Thank you so much i will keep in touch with you please will u mail me sumtimes coz when fibrofog strikes i might as well not have a brain.
    I will write your name in big letters in red pen & stick it on the side of my computer then i cant forget!
    Take care & may god bless you & yours.
  11. Fibrolady37

    Fibrolady37 New Member

    thank you so much for your reply.
    I will write your name down & stick it on the side of my computer then i cant forget!
    Please will you keep in touch as i need people to mail ive been off the site for a long time due to my failing bad health.
    I would really like it if we can keep in touch?
    May god bless you & yours.
  12. 1sweetie

    1sweetie New Member

    How were you diagnosed with Sjogrens? I,too, have very dry eyes although my test for dry eyes was not quite as low as yours. I also have lots of issues with eye strain and very sore eyes. I also am on Restasis twice a day. I can rarely wear contacts because of the dry eyes which is one of the reasons that I rarely drive.

    I also have difficulty swallowing and at one point my dentist mentioned that my mouth appeared dry. They have streched my throat and that did not seem to help.

    I have not had a diagnosis of Sjogrens although my opthmologist mentioned it.

    What test did you have to confirm the doctor's opinion? I can't remember but I thought you had to have a biospy to confirm this disease. Is there medication for it other than drops for your eyes?

  13. Jo29

    Jo29 New Member

    Sorry I haven't gotten back to you.

    I see you have gotten a lot of good help.

    I also had the paper stick test done on my eyes and my rheumy said that I failed it. Which means I was very dry.

    I have to use eye drops a lot and I also keep a drink with me all of the time (water mostly).

    I have a lot of trouble swallowing when I eat. I sometimes have to drink just to get my food to go down.

    My skin is also dry.

    Has your doctor ever looked to see if you have Lupus? Just wondering.

    I am also on Plaquenil for Lupus. I have FM/CFS also. So I am sure most of my pain comes from FM. Since I have been exercising and had physical therapy, I am feeling soooo much better, but still dry.


    Jodi[This Message was Edited on 05/25/2006]
  14. aquabugs

    aquabugs New Member

    I just found your post today. I too have Sjogren's Syndrome. My Schirmer's test (eye dryness) measured mine at 1 cm in one eye and 2 in the other eye. VERY dry eyes. I was using OTC eye drops 15 or more times a day without much relief. My opth doc put me on Restasis last year and I have had a remarkable amount of relief from it. Restasis is a prescription eye drop you use morning and night that eases the inflammation in the eye. If you have serious problems with eye dryness, ask your opthalmologist about Restasis. Just remember, like Plaquenil, Restasis can take up to six months to work. The only side effect I have from it is a bit of stinging when I put the drops in... very small price to pay for a huge amount of relief.

    Like you all, I can't often tell where my SS symptoms end and FMS begins.

    Just more fun to add to the mix!! LOL

    Take care
  15. lv2sing

    lv2sing New Member

    I was diagnosed approx. 8 yrs ago, but know I had it before that. I have the dry eyes, nose, mouth, ears, skin. I suffer from interstitial cystitis which is common w/ sjogrens due to the bladder lining thinning out from dryness. I also have fibro, OA, Raynauds, asthma, degenerative disc disease, back issues. The sjogrens causes lots of problems, some serious. You may develop mouth problems, like sores on tongue, metallic taste, nothing tastes right, trouble swallowing, chance of lymphoma increases about 20% than general population, trouble hearing, even though hearing tests will be normal, reflux , interstitial pneumonia, pleurisy, bronchiolitis.(we do not produce ENOUGH acid, not too much). Drink lots of water if you start having chest/rib pain with reflux. I take prevacid, but Nexium helps too. The cheaper versions tend to not help much. Look up the sjogrens syndrome foundation for book ordering, newsletters, etc. Moisture is another. Feel free to ask me anything. I've had it all!!! You may develop worsening of arthritis, develop joint pain (this is the 1st year I had shots in my fingers, they were literally burning like they were on fire). I hope my info helps. This is a disease to be taken seriously. Some people may only get dry eyes, mouth, etc, but others can get vasculitis (inflammation of the blood vessels), & end up in ICU. Just make sure you get a great rheumy. You will tire easily, you can also get parotid gland swelling, the same gland you get mumps in. You can have a "knot" along the jawline, up around the ear, or down the neck.Try massaging, heat. You may need antibiotics. I get this monthly. Most systemic things start after 7 years. Heat exposure may be difficult. Carry water always! Suck on sugarfree hard candies to help with developing more saliva. Don't do this if you have interstitial cystitis because they contain malic acid which irritates the bladder. Use sugarfree gum instead. Hope this helps! Take care. Be empowered, & read as much info as you can get your hands on. Rest often. I have to basically forget about stuff like volunteering. I make it to church maybe 2-3 x a month. I rarely go out. Grocery shopping kills me! My husband is supportive as he can be, thank God! I'll say a prayer for you! Hang on, look me up as often as you feel like it. I'll always write back. I'm only on board about 2-3 x a week, so be patient. HUGS
  16. JLH

    JLH New Member

    Yes, add me to the list of those who have it.

    When I was in Wal-Mart last week, in the mouthwash isle, I saw a new product (I think it was called Oceans xxxxx something) it is a mouthrinse with moisturizing agents. Next to it was a small bottle of the same thing in a spray bottle.

    I also saw it advertised in the last issue of Arthritis Today. I just can't remember the name. It's for people who suffer from dry mouth.

    I'm going to get some on my next trip to Wal-Mart. I should have gotten it last week. ugh! My daughter hadn't taken me for a month and it might be another month before I get back!
  17. Fibrolady37

    Fibrolady37 New Member

    thank you so much for your reply its so good knowing some one cares.
    I really appreciate you replying it means a lot to me.
    So i was dx with sygrens in march 04 i have a lot of other
    illnesses 40 altogether!
    Do u have any other illnesses as im doing some research into whether people have any other illnesses or whether its just sygrens.
    A lot of my illnesses symptoms overlap so i have nearly but not identical symptoms.
    I hope we can be friends as ive only recently come back to the board after a very long time so its good to have new friends.
    You take care.

  18. Fibrolady37

    Fibrolady37 New Member

    ranigar how are you?
    Where do u live?
    I live in england where it nearly always rains!
    Do u have any other illnesses aswell as syrgrens syndrome?
    I have a lot of other illnesses aswell.
    Im doing some research into whether people have jus sygrens or other illnesses aswell.
    So you willbedoing me a massive favour & it will really help towards my research.
    Take care
  19. Fibrolady37

    Fibrolady37 New Member

    ranigar how are you?
    Where do u live?
    I live in england where it nearly always rains!
    Do u have any other illnesses aswell as syrgrens syndrome?
    I have a lot of other illnesses aswell.
    Im doing some research into whether people have jus sygrens or other illnesses aswell.
    So you willbedoing me a massive favour & it will really help towards my research.
    Take care
  20. Ranigar

    Ranigar Member

    I wondered where you have been.Sorry you've been so ill.I live in Ohio.I have all the usual suspects this DD seems to have with it.Asthma,IBS-C,GERD,Neuropathy in legs and feet,anxiety attacks and Fibro.The Dr. suspects more is wrong but I gave up on tests for now and see a Rheumy close to home to monitor my symptoms.The Plaq is helping with fatigue finally and Cymbalta keeps the nerve pain to mostly tolerable levels.Skelatin for restless legs works a little.I try and pace myself but I too have no energy to get out or call old friends anymore.We all do the best we can don't we?Good to hear from you.I'm glad you have your sweet girl to brighten your life.

[ advertisement ]