Anyone have Sjogren's too?

Discussion in 'Fibromyalgia Main Forum' started by Hairymel, Jan 25, 2007.

  1. Hairymel

    Hairymel New Member


    I was wondering if anyone else was out there with Sjogren's as well as the fibro.

    I'm very uncomfortable tonight (spasms) and I am finding it so hard to concentrate. I'm usally so sharp but the past week or so I'm a scattered mess. I was diognosted with the Sjogren's a little over two years ago. Started a flare about 3 weeks ago and then suddenly and with out warning everything changed. I started getting terrible mussle spasms...pain in my face, sholders,wrists,elbows,knees,and feet. Not the joint pain I was use to but a burning constant pain. My muscles always seem to be on the verge of going in to a Charley horse. Belive it or not one of the worst pains is the muscle that runs up my big toe into my foot and seems to go up my shin. I have to keep bending my toe back down towards the soal of my foot to aleveate the constant stress. In a little over a week I have been given three diffrent prescriptions for muscle relaxers from my Dr. Each getting progressivly stronger as the one before did not help.

    Anyway I'll stop rambling and say. God bless all of us here who live with pain every day . Who are often ignored,over looked or out right insulted for it and who continue to do our best for our family, friends and hopefully for ourselves.

    I just relised that there is no spell check on this ...and as I'm the worst speller in all the world I hope you will forgive and over look my mistakes.

    Thanks and Rest well,

  2. JLH

    JLH New Member

    Yes, I do, Hairymel! What a name!!

    I checked out your bio and found it empty as you are brand new to our board!!!

    WELCOME!!! Glad to have you! If you edit your subject line and add in that you are a new member, you will probably receive more welcomes!!

    My Sjogren's really bothers me with the dry mouth and swollen parodid glands--the glands swell and cause me earaches and toothaches.

    Check our my bio--I have plenty of more problems in addition to the fibro, cfs, lupus, and arthritis.

    P.S. Don't ever worry about the spelling and/or typos -- we're all the same!!

  3. lv2sing

    lv2sing New Member

    Have had it for almost 10 yrs now, or at least, that's when I was diagnosed. They say generally the systemic symptoms start after about the 7th year. I have lots of joint pain now, I get parotid gland infections about every month now (the gland that swells when you get the mumps). I have to have water w/ me at all times. I use Restasis & GenTeal eye gel for the dry eyes. I recently got prescribed a eye steroid because the Restasis doesn't seem to working as well for the inflammation. I've been on it a few years now. I also have punctal plugs in my lower lids. It made no difference w/ me as I have SEVERE dry eye. The doctor is afraid of retinal damage, which is why were doing topical steroids.
    I took plaquenil a while back for joint pain & fatigue, took it for 2 yrs, but couldn't stand it anymore due to stomach cramps & severe gas pain. It worked GREAT for the fatigue though. Haven't been the same since. I am starting Methotrexate this week, or when I am totally over my bronchitis. Mostly for joint pain. I have had to get injections in my fingers before it's gotten so bad.
    I know what you mean about the spasms in toes. I have never had this, now all of a sudden, I've got this, & the burning in toes. Used to only be in my fingers. I saw my rheumy a few weeks ago, & he said I now have mild RA, which could be the burning. Also have early lupus now. If they do a lupus panel on you, make sure they also do a Histone test on you. This checks for medicine -induced lupus. Which is what mine came back as, very high. Since I am not on a medication that causes that, he said it means early lupus.
    Good luck, write if you have any more questions. You might look on line for the Sjogrens Syndrome Foundation. They have lots of info you might not find here. (But were GREAT!) Best of luck to you.
  4. Grace4today

    Grace4today New Member

    I think many of us experience Sjogren's type symptoms, without actually being diagnosed. FM being one of the great imitators of other conditions.

    I too live with the burning pain and spasms. At one point, my calves were rock hard (like a charlie-horse) for a couple of years. I also have it going from my legs into my feet, quite often down through the arch into my big toe. The worst spasms have been lately in my hip and right up my back. The muscle relaxers don't seem to help much at all. The burning is pretty awful at times, but not nearly as bad as the spasms.

  5. makezmuzic

    makezmuzic New Member

    Hi hairy Mel. I 'm new on the CF board. I usually just post to fibro. I was told last year that I have either sjorgrens, sarco, or scleraderma. All three get missDX'd as each other on a regular basis.

    I fianlly had a paratiodectomy a few years ago. Mine had swollen so badly. At the time they said it was a "Warthins" tumor. But I doubt it. I believe its the sjorgrens because of the drymouth, dental problems, GERD, RA, and connective tissue disease costochondritis.

    I can relate to the muscle cramps, spasms and burning pain. There are days I'm ready to bend my big toe off if I could! LOL! It becomes the toe from he11!
  6. lurkernomore

    lurkernomore New Member

    I am very newly diagnosed and just started the Plaquenil about three weeks ago. I have already skipped two days due to some really bad tummy issues. But I am back on it and trying to stick it out to see if it helps me. Bummer is that I keep hearing it takes six months to notice any benefits. So right now all I am feeling are a couple of unpleasant side effects.

    Are you on a treatment plan yet? I mean like Plaquenil, Steroids or Methotrexate? I am just wondering if any of these wold help you with the terible smasming? I ask because all of this is still so new to me and I still tend to chalk all my symptoms up to the fibro.

    There is a wonderful site called Sjogren's World that someone else here referred me to. It is full of fantastic people and answers all types of questions. The message board is awesome too. I hope it is okay that I have posted that info here but I don't see a message board for Sjogren's listed in the Prohealth listings. Lupus is as close to it as it gets there and it's not the same disorder. Best of luck to you.
  7. Hope4Sofia

    Hope4Sofia New Member

    My neurologist suspects it but my atb test was negative.

    I have very dry eyes - have to use tears regularly. I also have very dry skin.

    I also have MVP and TMJ which Doc suspects is evidence of a connective tissue disorder.

    I haven't had my eyes tested but I don't know if there's any point when the atb test already came back negative.


  8. Ranigar

    Ranigar Member

    I was dx 3yrs. ago.I started having neuropathy in my legs and could barely walk.By the time I made the rounds of referred Drs. the neuropathy was permanent.Right now everything has settled down and meds are working so I am really careful to rest between activities and watch my stress levels so as not to cause a flare.This is what I've read and been told to do but I feel lke I'm holding my breath waiting for all ll to break loose anyway.Meds I take are Plaquenel,Cymbalta,Lyrica for RLS,Restasis, and a bunch of stuff for asthma,GERD,ect.Good luck to you.
  9. ask2266

    ask2266 Member

    I was diagnosed with Sjogrens in 2002, and I got CFS in 2006. I read somewhere that researchers have isolated the gene for CFS and that it is the same gene that they think makes people susceptible to Sjogren's and Rheumatoid Arthritis. Now I'm just praying that I don't get Rheumatoid Arthritis! I don't have any joint pain with my Sjogren's-just dry eye and mouth and chronic hives. The Plaquenil has helped with that, and I got punctal plugs put in my eyes to help the dryness. I didn't have any muscle pain until I got CFS, and it has been terrible, especially in my shins and my quad muscles in my thighs. Muscle relaxers and pain relievers did nothing for the pain. The only relief I found is when I went on T-3 thyroid hormone. My thyroid was normal, but my doctor said that the muscle aches mean that you don't have enough T-3, so he prescribed it. As soon as I went on it, the muscle aches went away. You should look into it-- thyroid hormone has spared my a lot of suffering. --ask
  10. ayhatch

    ayhatch New Member

    I also have Sjogren's in addition to Fibro AND thyroiditis AND Adrenal Insuffiency.
    I'm on Restasis, Cymbalta, Lodine, Salagen, Drenamin (for Adrenals) and a bunch of vits and supps plus strict diet (No gluten, sugar or cow dairy).
    Welcome to the club! Ain't it grand...NOT!
  11. taniar

    taniar New Member

    I have all the symptoms of Sjogrens, but tests are all negative.

    I know my thyroid is not working right, all the tests show its ok, I take T-3 but don't know how much to take.

    Can anyone tell me how much T-3 they take?

    Can anyone tell me if you can have Sjogrens without positive tests.

    Thanks Tania

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