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CFS linked to Sjogren's Syndrome - weird auto-immune disorder

Discussion in 'General ME/CFS News' started by SaveMe, Mar 16, 2011.

  1. SaveMe

    SaveMe *****

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    Hello,
    after listening to Dr. Nancy Klimas at the Univ. of Miami, I concluded a few things.
    #1 cfs-me patients have an increased risk of lymphoma & leukemia
    #2 there is an association between cfs-me and Sjgren's syndrome.

    Sjgren's syndrome is a systemic autoimmune disease in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It is likely that Interleukin 1 is the marker for fatigue. The hallmark symptom of the disorder is a generalized dryness, typically involving dry mouth and dry eyes. It can also be systematic (as seen in 60-70% of patients) including poor sleep, brain fog, and fatigue.

    Check it out! http://cfsknowledgecenter.com/ea10.php

    http://www.youtube.com/watch?v=Sa7XQ_Hr_8Q&feature=rec-LGOUT-exp_fresh div-1r-3-HM

    http://www.youtube.com/watch?v=oXpyVW6XPik
    http://www.youtube.com/watch?v=WHMc1h3X79Y&feature=related


    http://en.wikipedia.org/wiki/Sj%C3%B6gren's_syndrome#Signs_and_symptoms
     
  2. sleepy237

    sleepy237 Senior Member

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    In my understanding, Fibro is well known to be associated with Sjogrens and Fibro can either be a Primary diagnosis or Secondary(usually in relation to auto immune disease) including Sjogrens. Not sure about CFS, will be interested to see more replies. I definitely think I have autoimmunity occuring either as part of CFS or coexisting. Dry mouth can also be caused by autonomic dysfunction as can excess saliva depending on which is dominating. It is a maze of an illness and I am thankful for the good doctors like Dr Klimas. Just wish there were more like her. Take care ~Sleepy
     
    merylg and Lotus97 like this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sjogrens does effect the eyes and my eyes are constantly read and itchy, how can u get tested for sjorgens?? i Have used abx and av creams etc thinking it was infection based but i have in the back of my mind it maybe sjorgens. I understand that there are alot more symptoms with sjorgens like joint pains etc but alot of illnesses have these symptoms???
     
  4. Mithriel

    Mithriel Senior Member

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    I have developed sjorgen's syndrome.

    The dryness in my eyes has lead to recurrent corneal erosions where the cornea sticks to the eyelids during the night and gets ripped when you start to dream, very painful, I waken up with a scream.

    I have had some relief from using celluvisc eye drops during the day and lacrilube eye cream with moisture goggles at night.

    http://www.eyeeco.com/ in the UK

    and

    http://www.eyeeco.com/ in the US


    I now think it is vitally important to stop dry eyes getting into the state mine are in, which is why I am posting this.

    You can use the goggles for a heat treatment which is soothing.

    I also use biker sunglasses outside as they are padded and keep out dust and wind.

    Mithriel
     
  5. SaveMe

    SaveMe *****

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    check this link out for getting diagnosed. Maybe ask your GP if he or a specialist can perform some of the tests: Presence of antibodies common in Sjogren's syndrome, Slit-lamp test, Shirmer test, etc. http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147/DSECTION=tests-and-diagnosis
     
  6. Mya Symons

    Mya Symons Mya Symons

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    I went to see Suzanne Vernon speak several months ago. If I remember right, she said it was common for many people with CFS to have a slight positive on the Sjogren's test, but not enough to be diagnosed with Sjogren's. I could be wrong. My memory sucks.
     
  7. sleepy237

    sleepy237 Senior Member

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    Hell
    @ Heaps my friend was diagnosed by biopsy of mouth tissue or salivary gland not too sure which. take care all ~sleepy
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    In the cfs book 'fatigue to fantastic' yet to get to fantastic, drT has a saying that alot of cfs people drink like a fish and pee like a racehorse, this discribes me to a T, i know we have alot of hormone and adrenal problems and also wonder if its got alot to do that as some of these other adrenal hormones that control our water intake etc, although i dont have pots, i wonder if this is the reason why many do get pots, maybe dont have the urge to drink and are always dehydrated slightly, for me my urge to drink is almost constant, as my trips are to the dunny can, or the nearest tree in an emergency.

    Now i have just started abx doxycyline for eyes which i have used in the past with some success, but i think it mainly works through its anti-inflammatory effects rather then its antibiotic effects. I do use an assortment of eye drops from lubricant drops to red eye reduction to an over the counter eye drop for common eye infections and they all help to some degree.

    As far as getting a diagnosis for sjorgens, what treatments are there really that i dont already use? I have read that sjorgens can effect other organs in the body and connective tissue etc. If its auto immune has anyone had any success with prednison for flares of sjorgens?? If u have read one of my threads on pregnenolone, it is basically the building blocks of the body for hormones especially cortisol and i did notice that this eye inflammation was greatly reduced but after a few weeks couldnt tolerate the pregnenolone.

    ps, all this is suppose to be a womens problems, i never took the apple off the tree, eve made me eat it, lol.

    cheers!!!
     
    Lotus97 likes this.
  9. drex13

    drex13 Senior Member

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    my Mom has Sjogrens and fibro. Check out LDN for use with sjogrens and CFS and all other auto immune related diseases.
     
  10. sleepy237

    sleepy237 Senior Member

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  11. WillowJ

    WillowJ Senior Member

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    it's not at all surprising that we have a link to an autoimmune disease. ME/CFS could BE an autoimmune disease. At least half of Fukuda-CFS have positive ANA, which is anti-nuclear antibodies, or antibodies (you know, things the immune system makes usually to identify and attack an invading pathogen like a cold virus) to something in the body's own cell nucleus, such as your own DNA (or possibly, one of my hypotheses, maybe an integrated retrovirus), and is a general marker of autoimmune disease.

    things we should know about dry eyes

    interestingly, Sjogren's may be related to lymphoma

    Another auto-immune (and autoimmune-accompanying) condition we may have is Raynaud's syndrome (I think I've heard of this in connection to us, and it certainly goes with autoimmune disorders in general, but it would seem like it should be related to one like ours where circulation and blood vessels are affected).
     
  12. WillowJ

    WillowJ Senior Member

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    Hmm, I found the citation for that over half figure, and it doesn't look like "over half of Fukuda-CFS have ANA" (as I have always seen it interpreted) is necessarily exactly what it means... never mind, brain fog, that isn't the (9) reference but this paper does say that, only it's Holmes criteria

    http://www.ncbi.nlm.nih.gov/pubmed/8878441

    Konstantinov K, von Mikecz A, Buchwald D, Jones J, Gerace L, Tan EM. "Autoantibodies to nuclear envelope antigens in chronic fatigue syndrome." J Clin Invest. 1996 Oct 15;98(8):1888-96. PMID: 8878441 PMCID: PMC507629

    Autoimmune Disease Center and Department of Cell Biology, The Scripps Research Institute, La Jolla, California 92037, USA.

    12. Calabrese, L.H., M.E. Davis, and W.S. Wilke. 1994. Chronic fatigue syndrome
    and a disorder resembling Sjogren’s syndrome: preliminary report. Clin.
    Infect. Dis. 18(Suppl. 1):S28–S31.
     
  13. SaveMe

    SaveMe *****

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    good find willow J, it surprises me that the link you posted was from 1996, 15 years ago, and still not much more is really known about the biological mechanisms involved in CFIDS. A slow moving field, at best.





    the CFIDS name I like best! :)
     
  14. Cort

    Cort Phoenix Rising Founder

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    A slow moving field at best! That's for sure. Have any researchers ever even done a family of co-morbid disorders? ....

    My mother died of Sjogren's Syndrome (or the complications brought on by treating it) - something that rarely happens - so she had a really bad case of it. Her kidneys keep getting attacked - she was on Prednisone for years and years. One of the first doctors I saw - said your mother had Sjogren's syndrome - you have CFS!

    By the way I changed the title of the post a bit to add some keywords (Sjogren's Syndrome); having keywords in the title for some reason is really important for google search and I want this discussion to get picked up if possible. I do that now and then with posts.
     
    allyb likes this.
  15. Mya Symons

    Mya Symons Mya Symons

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    From Lab Tests Online
    Tests for Sjgren syndrome may include:
    • Antinuclear antibodies (ANA) — positive in most cases
    • Rheumatoid factor (RF) — may be positive
    • Antibodies more specific to Sjgren syndrome — Anti-SS-A (also called Ro) and Anti-SS-B (also called La); the tests for these antibodies are often performed as part of an ENA panel and are frequently positive.
    Other tests:
    • Salivary gland biopsy — to look for accumulation of lymphocytes and inflammation
    • Schirmer test — to measure tear production
    • Rose Bengal or lissamine green staining of eye (cornea or conjunctiva) — to evaluate the extent to which dryness has damaged the surface of the eye

    You can order Anti-SS-A and the other tests yourself here:
    https://www.directlabs.com/OrderTests/tabid/55/language/en-US/Default.aspx

    I had a positve Anti-SS-A and ANA years ago. However, they were low positives and the other blood tests came out negative. I am thinking about getting the anti-SSA test again by ordering it online. My eyes, throat and mouth have been extremely dry lately. I figure if I order this one test online and it comes out negative, then that saves me a bill from a rheumatologist.
     
  16. insearchof

    insearchof Senior Member

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    Hi Cort

    Sorry to hear about your mum. Full blown Sjogrens could not have been any fun to live with. Does n't Prednisone - a powerful steroid, contribute to kidney failure? I knew a family member on it and that was my understanding.

    Sjogrens is more common in CFS than is probably recognised, but as someone else mentioned, is commonly acknowledged in Fibromyalgia patients.

    Dry eye is a condition you need to take seriously and if you find your lid stuck to your eye ball (as another poster referred to) do not try to ply it open - as apart from horrible pain - there is a real danager that you will rip cells off your corena ( leading to permanent damage, if I recall). That situation is regarded as a medical emergency - to be attended to by an ENT hospital/doctor or ER. Applying a warm hot compress to the eye, on route to have it looked at - helps.
     
  17. SaveMe

    SaveMe *****

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    Cort, I am really sorry about that tragedy. This autoimmune disease does not get enough recognition, as you have said. The Primary Sjgren's Syndrome Registry in the UK is a tissue biobank of samples taken for research supported by the Medical Research Council. So at least something is moving.

    Here is another informative quick video on Sjogren's Syndrome (1 min clip--a doctors' presentation) http://www.youtube.com/watch?v=6VQYSYLfpKE

    And its not just the typical dry mouth, dry eyes, dry skin. The doc says people are coming in presenting a whole host of symptoms including sleep problems. And im surprised more scientists aren't researching a syndrome that increases the incidence of neonatal lupus erythematosus with congenital heart block. I mean, what more does it take?
     
  18. WillowJ

    WillowJ Senior Member

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    Sorry to hear that, Cort. :hug:
     
  19. Boule de feu

    Boule de feu Senior Member

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  20. xrayspex

    xrayspex Senior Member

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    I just got dx with sjogrens in last month or so and was in a bad flare up recently with pain etc after having to do some physical work so doc suggeted trying burst of prednisone, hadnt done it before and couldnt handle rec'd dose, but it helped, altho didnt like how it made me felt, but I experimented after that with tiny crumb of a dose and its sort of normalizing, its all too new to know if good idea, but may check that out a bit longer....I mean like .10 of a mg . when I was taking like 5 mg it made my bladder hurt and I peed all the time.....I dont like meds that effect my bladder/kidney. Sorry to hear that about yr grama Cort, I wonder if it was the sjogrens or the prednisone or both that hurt her? Has anyone ever tried small dose of hydrocortisone with any luck? I heard of a woman with fibro taking minute dose of prednisone and doing well on it, its her regular tx.
     

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