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Sjogren's Syndrome

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  • l61899 2

    Can this happen?

    For 9 yrs Ive had electric shock type pains jumping around my body, muscle cramps, muscle twitches, rashes, and chronic inflammation of my pancreas. I have occiptal neurolgia too. All my AI tests come back clear but my dr has suspected either sjrogrens or limited sclerederma. My mouth only seems

    12 replies 0 votes Last reply
  • tj268 3

    More questions :)

    Hi all! I have some more questions and wondering if anyone has similar issues. The main thing is my back this time. It seems like it gets injured, actually feels painful whenever I do anything anymore. I just moved a lightweight bench 2 days ago and omg the pain. So I rested and the next day tried

    1 reply 1 vote Last reply
  • jeniferpg 2

    Sjogren's and neuropathy

    I've just been diagnosed with Sjogren's from a lip biopsy that the ENT did. My Rheum says it explains nearly everything else I have: Neuropathy Small Fiber Neuropathy Restless legs Dry Cough Dry eyes Dry mouth Dental decay Taste changes Muscle pain and weakness Enlarged Parotid glands for three

    12 replies 1 vote Last reply
  • Cloch47 3
  • Mikki1220 2

    Sjrogrens and Glaucoma

    Before being diagosed with Sjrogrens, I was having blurry vision.  Then in August of 2016 was diagnosed with Sjrogrens and seeing lots of doctors.  Last night was my eye visit and my doc told me I now have Glaucoma.  My right eye is worse than the left and gave me Lumigan drops.  So does anyone

    15 replies 1 vote Last reply
  • el721 2

    Newly diagnosed with Sjogrens, depressed

    Hello al I am 54 year old woman and recently diagnosed I,ve been undergoing tests (bloodwork, CT scans, etc..) for a few months now. Finally saw a Rhuematologist a few weeks ago and she's certain I have it. waiting for results to confirm. ​I have been feeling numb emotionally all this time but

    8 replies 0 votes Last reply
  • Strikerlm 2

    Possible Sjogrem's

    Hello from Canada everyone, I am 51 yrs old. I still can't spell well but I'll try to spell check as much as possible. And my stories are long. 😊 I have been suffering since my 20's. My doctor blames everything on mental illness, hormones and now the aging process.  After finally getting to see

    12 replies 1 vote Last reply
  • tj268 3

    Anyone diabetic also..Toujeo??

    Hi, I am starting Toujeo next week and am wondering if any of you fellow SS sufferers are also diabetic and if so have you been on this newer drug/insulin? I was reading up on it and it says its number one side effect is dryness of mouth and need that like a hole in the head lol :D

    1 reply 0 votes Last reply
  • tj268 3

    numbness and shocks

    Hello all! I was just wondering if anyone gets facial numbness and electric like shock pains? Lately my eyelid and cheek have been going numb (a couple times blurry vision) and I get electric like shocks again on my face, legs, arms ,trunk and now my toes. I had nasal surgery a few weeks ago due to Sjogren'

    53 replies 1 vote Last reply
  • brenwag68 2

    Sjogren's Syndrome

    Hi, I am new on here, so I am not sure how this I just came home from my rheumatologist "he's a new doc for me" I was diagnosed approximately 3 years ago as having Sjogren's but also possible other non specified autoimmune diseases. I have all of the symptoms of Sjogren's but also Lupus (

    53 replies 2 votes Last reply
  • christina12418 2

    Pain in legs

    Started with pain in the back of my knees. Now it is all over. It feels like a muscle pulling tightly inside. Now it has become very painful and almost unbearable. I know Sjogren's can affect your nerves and muscles. Has anyone else experienced this?

    15 replies 1 vote Last reply
  • Mikki1220 2

    Sjogrens Causing Brittle Nails

    Not sure if it is the meds or the Sjogrens but I had beautiful long nails that I gel'd every 2 weeks when suddenly my nails hurt to the touch.  After having the gel removed you can see red inflammation underneath my nails.  Now they are extremely short and yet still weak and keep cracking.  Doctor

    19 replies 2 votes Last reply
  • joanne50026 2
  • susan0217 2

    Bloodwork came back negative

    My doctor did bloodwork to check me for Sjogren's and of course it came back negative. I am so upset because I have every symptom of it. I just knew they were going to call & tell me they finally figured out what is wrong with me. What can I do if I have all the symptoms but bloodwork comes back

    29 replies 2 votes Last reply
  • millie1202 2

    Sjogrens Symptoms-Shortness of Breath

    Hi. I tested positive not too long ago for Sjogrens. I had a very low score (1.8- Ssb). However, my symptoms dont seem mild. Has anyone experienced shortness of breath? I have the dry eyes and mouth, along with Fatigue, numbness, but I dont see much shortness of breath from other ppl who

    4 replies 0 votes Last reply
  • lia23756 2
  • gretchen37301 2

    Hair loss and scalp inflammation

    Hi. I have sjogrens as diagnosed by anti-ro (ssa) antibodies. I started having hair loss at the time I was diagnosed but my doctors seem a bit perplexed about whether it is related to Sjogren's, it has been falling out for 3 years-diffuse loss not patchy. I don't have lupus but I know they are

    10 replies 2 votes Last reply
  • marianb 2


    can anyone with sjogrens tell me if they have experienced a metallic taste with sjogrens?  

    6 replies 0 votes Last reply
  • kimberley 89054 2

    Sjogrens and Injury

    Hi there. I have had sjogrens for 4years now, and worst symptom is dry mouth. I use pilocarpine regularly and it seems to help. Recently I had a very traumatic injury to my hand involving a kitchen blender and my world has just stopped. I've been told I willbe okay eventually and am resting etc. I

    6 replies 2 votes Last reply
  • mandy95 3

    Sjorgrens and Ikervis eye drops

    Has anyone had any experience using Ikervis eye drops (Ciclosporin).  They are to be used at night time only.  My eye Dr has just prescribed these for me to try as he was just at a Sjorgrens seminar and these are currently being recommended for Sjorgrens suffers.  Any advise appreciated. regards, mandy

    13 replies 1 vote Last reply
  • Cowgirl918 3

    Occular Migraines-I can see the light but nothing else.

    I starting to feel a little like the latest version of the Merck Medical Dictionary. Doctors are now attaching labels to every symptom after so many years of "It's just ideopathic". My most recent experience this week was losing my vision in one eye for an hour or so. I had white spots of frosted

    18 replies 1 vote Last reply
  • sharon54739 2


    Hi I have recently received a letter from my rheumatoid specialist asking for my dr for regular bloods as ive recently been diagnosed with Thrombocytopenia and intermittent neutropenia all I know about this is that iv had a few low white cells count can anyone explain further not really

    6 replies 0 votes Last reply
  • joanne57522 2
  • Cowgirl918 3

    Skin Issues

    What kind of skin issues is everyone experiencing? Photosensitivity? Rashes?  Mine are a mixed bag and the most visible evidence of my SS.

    13 replies 0 votes Last reply
  • jb73193 2

    What next

    Just wanting to know with others who have this 'condition' how it evolves. I had BPPV about 8 years ago around the time being diagnosed with Sjogrens and it comes around periodically. My blood tests indicate Sjogrens and I also have fibromyalgia (seems to be the thing with sjogrens), however I don'

    6 replies 0 votes Last reply
  • marianb 2

    sjogren's headaches

    Hi everyone. I'm new to the forum but not to sjogrens. I was diagnosed in 2006. First it was melanoma, then right after that sarcoidosis and then sjogrens and fibromyalgia. This was all within 6 months of each other. My sarcoidosis is in remission but the sjogrens and fibromyalgia are with me most

    15 replies 2 votes Last reply
  • Cowgirl918 3

    Fatigue and SS

    Can I receive some examples or feedback about fatigue levels. My fatigue is rediculous. I am omly 58 years young and have always been very active. Now I am doing well most days to get through the day with basics like feeding dogs, shower etc. Does anyone have ideas for relief from fatigue?

    27 replies 3 votes Last reply
  • Tumtum1963 4
  • topsy-turvy 2

    Sjögren's gets me down

    Hello.  I'm 48, diagnosed with Secondary SS last month with RA.  My mum, 83 has been suffering with the dry symptoms for 30+ years, diagnosed properly just over 10 years ago.  Seems like I am noticing more and more symptoms recently, increasing and I am not happy about it coz it hurts  To help I

    20 replies 2 votes Last reply
  • lily65668 6


    Does anyone else suffer from BPPV (benign paroxysmal positional vertigo)? If so, do you think it's part of Sjogren's syndrome? I've had attacks of vertigo practically all my life, since long before I started getting what I now recognise as symptoms of SS. I'm talking about the real deal, btw, not

    12 replies 1 vote Last reply
  • Megheart 2

    A question. A theory?

    Has anybody wondered like me, about the Fibromyalgia - Sjögren's Syndrome bedfellows? It seems that a number of people get a diagnosis of Fibromyalgia before (sometimes long before) they get their diagnosis of Sjögren's Syndrome (S.S).  However what if it is really all along.? What if for some,...

    20 replies 1 vote Last reply
  • jennifer84972 2

    Sjogrens and aching all over?

    I was diagnosed with Sjogrens year before last and have since suffered the normal foggy days and ridiculous fatigue etc i was prescribed Hydroxychloroquine but decided not to take it after i experienced side effects. ​Anyhow, I was wondering if anyone else experiences the same as me, maybe 2 or 3

    7 replies 0 votes Last reply
  • Cowgirl918 3

    Autonomic Symptoms

    Am I the only SS patient with low BP? I have battled my low BP and salt wasting with the aid of Florinef for over 20 years. Can't stand up without it. Then about 6 years ago I was diagnosed with "Hypoventilation". My oxygen runs low when I am quiet or NOT moving. So weird. Most people are the

    4 replies 0 votes Last reply
  • shaq26875 3

    Old tendonitis flareup or SS flareup

    Had 2 sites of tendonitis (on shoulder blade and top of arm) about 10 yrs ago (at least) which flares up now and again if i over use the arm and carry heavy weights etc . Since early january i have been suffering from acute tendonitis shoulder and arm which is now affecting elbow and

    6 replies 1 vote Last reply
  • sharon54739 2

    severe dry eyes

    can any one help me ive got really severe dry eyes n mouth but my eye gels are really not helping I'm on Viscotears and use lari-lube at night 1 eye seems a lot more severe than the other.. Iv bought loads of over the counter sprays and nothing seems to be helping all I do I constantly rub them

    19 replies 1 vote Last reply
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