What Is Sjögren’s Syndrome? How to Tell If You Might Have It

Updated on July 18, 2018
awordlover profile image

My articles are from my perspective as a retired healthcare professional and an educated patient.

Dry eyes may require lubrication from over-the-counter eye drops. Your doctor may order prescription Restasis.
Dry eyes may require lubrication from over-the-counter eye drops. Your doctor may order prescription Restasis.

This Article Is a Long-Form Quiz to Help Determine If You Might Have Sjögren’s

The following symptom-assessment quiz is designed to help you evaluate yourself so you can decide whether you should ask your physician if you might have Sjögren’s syndrome or some other autoimmune disease.

Not all of the listed symptoms are Sjögren’s—some are for MS, lupus, rheumatoid arthritis, and a couple of other autoimmune diseases.

The point of the evaluation is to show you how Sjögren’s mimics other diseases. Multiple sclerosis, lupus, fibromyalgia, and rheumatoid arthritis are among the top four mimics and the diseases that most doctors zero in on.

Because Sjögren’s attacks any or all systems of the body (called systemic disease), sometimes doctors can miss diagnosing someone with Sjögren’s syndrome. It can look like any number of other diseases. If you know what most of the symptoms are and you have any of them, you can put your doctor that much closer to giving you an appropriate diagnosis and start treatment sooner.

Note: You do not have to have every symptom on the lists that follow to be considered for Sjögren’s syndrome. Where you see the target scores at the end of each section, these are the minimum number of symptoms that most physicians will use to rule in/out Sjögren’s syndrome. All I did was put the wording in everyday context to help you identify the symptoms more easily.

Example: Sometimes just saying "dry eyes" won't make you think of "a gritty feeling or like you have a speck of dust/dirt in your eye." Sometimes saying "reflux" won't make you consider "heartburn."

Read each category, write down the number of symptoms that pertain to you, answer the quiz at the end, and read your results.

Body Chart of Sjögren’s Symptoms

Source

1. Dry Eyes

If your eyes were dry, itchy, and/or sometimes sting, you'd probably go to see an ophthalmologist or visit your primary doctor. Sometimes, it feels like a piece of dirt/dust/sand is in your eye.

But it might not be an eye problem at all... it could be a symptom of another disease.

Get a piece of paper and keep it handy—this is going to become your symptom list.

Add up all the symptoms that apply:

  1. Your eyes are dry.
  2. You find yourself frequently using eye drops (Visine, Murine).
  3. Your eyes are itchy.
  4. Your eyes sting.
  5. You up the numbers on your reading glasses in short periods of time, or suffer from decreased vision.
  6. It often feels like you have something in your eye.

Sicca: Dry Tongue and Eyes

Hypofunction of salivary glands.
Hypofunction of salivary glands. | Source

2. Throat and Salivary Systems

  1. Your throat isn't exactly sore, but sometimes it burns.
  2. Swallowing is difficult and can sometimes make you choke.
  3. You need more fluids to be able to chew and/or swallow food because it doesn't feel wet enough.
  4. Sometimes food just smells bad when it really isn't bad at all.
  5. Sometimes foods smell excessively sweet or more potent, like a new vanilla air freshener or warm brownies straight from the oven.
  6. Your voice comes and goes—more goes than comes.
  7. You are hoarse and sometimes you squeak mid-sentence or your voice drops a register.
  8. You never know when your voice is going to give out in the middle of a conversation.
  9. Sucking on Hall's or other throat lozenges, or drinking more fluids doesn't totally fix it, but it helps enough so that you might ignore bringing it to a doctor's attention at your next visit.
  10. You might start getting cavities when you haven't had one in a long time.
  11. Your lips need moisturizing balm because they crack, even when the weather is not cold.
  12. You get mouth sores (canker or cold sores).
  13. Your nose is dry; you notice less blowing or post-nasal drip than there was previously.
  14. Your tongue is dry.
  15. You have a history of bile duct blockages in your liver.
  16. You have abnormal bilirubin blood test results (always get copies of lab results to keep for your records).

3. Overwhelming Fatigue

  1. You get so tired that you don't want to get out of bed or get dressed for the day.
  2. You are not motivated to do even pleasurable activities.
  3. You feel the need to drink an occasional energy drink.
  4. You kickstart with coffee, sometimes multiple cups.
  5. You are not sleepy, just tired.
  6. You are anemic (take a Vitamin B-12 and Vitamin D-3 blood test for a true result).

4. Memory and Concentration Problems

  1. You used to be able to do a crossword puzzle all the way through, but now you do half of it and give up. You surf channels on the TV or radio.
  2. You sometimes get to the store and, even though you have a mental list of all that you need, you forget due to memory loss.
  3. You go to call your home or office and you know the number like the back of your hand, but it escapes you right now.
  4. Word fishing—when you can't put a name to a person, place, or thing.
  5. Brain fog—when your thoughts are going every which way, or when you draw a blank.

5. Digestive System

  1. You notice that you have acid reflux after many meals.
  2. Sometimes you get nauseous after eating or drinking, even if it is just water.
  3. You throat glands are swollen.
  4. You experience heartburn, even after drinking water.
  5. You have excessive gassiness and flatulence.
  6. You suffer from gastritis attacks, bouts of pain followed by bowel movements, or irregular or loose stools.
  7. You suspect food poisoning when you get sick because you feel like you're going to die.
  8. You suffer from colon issues, such as constipation and gas pain. You may suspect gluten intolerance.
  9. Many foods you could eat in the past now make you sick.

6. Nervous and Muscular Systems

  1. You experience muscle weakness, such as dropping things or losing your grip on items.
  2. You suffer from joint pain (any joint).
  3. You experience neuropathy (nerve pain as opposed to pain in the joints).
  4. Your feet are sore and aching, which could be burning or just soreness.
  5. You experience tingling in your fingers, toes, feet and/or hands, on the tip of your nose, or ears.

7. Respiratory System (Ears and Nose)

  1. Your nose is dry.
  2. You experience bleeding or dried blood in your nose, but only when you blow it or when it is dry.
  3. You experience many sinus infections.
  4. You have less earwax and fewer nasal secretions.
  5. Your ears pop more often.

Target Results

My "total" number of symptoms from the areas above is:

See results

What the Ranges Mean

If you scored less than 10, it is not likely you have Sjögren’s syndrome yet. Keep an eye on the other symptom targets to see if any manifest themselves. Ask for ANA to be included in your next blood-work appointment to rule out any other autoimmune diseases.

If you scored between 11 and 15, you should have blood work done and an autoimmune workup to see if you have autoimmune markers.

If you scored between 16 and 20, suggest Sjögren’s to your doctor for consideration. The smart patient goes forewarned and forearmed to the rheumatologist so that when the doctor is busy looking for everything else, you can turn around and say "doctor, how about testing me for Sjögren’s syndrome?"

If you scored 21 or higher, insist that you want to be tested. If you are going to a neurologist, ask for a referral to a rheumatologist. Don't let your doctor overlook these symptoms and begin treatment for another autoimmune disease unless they (and you) are reasonably sure that Sjögren’s has been ruled out.

Even after it is ruled out, ask your doctor to retest you every year for at least five years because your body is ever-changing. What is not Sjögren’s today could be Sjögren’s in a year or more from now.

A word to the wise:

If you doctor-hop, you can expect it to take much longer to get a diagnosis because you will not have continuity of care. I'm all for changing doctors when you don't like one or if you think another might be more knowledgeable. But make sure that at least the "test result parts" of your records go with you when you change doctors because even though new doctors will do their own tests, it helps to have previous test results to weigh against. If your levels were stable a year ago and now they are not, that is important information for your doctor to know. They can only know that with access to your records.

Primary and Secondary Symptoms

With doctors being so busy, having a large patient load, and missing the obvious because they are looking for underlying reasons for symptoms, patients have to be their own advocates. If you don't do your homework, you can expect to spend five years or more getting a diagnosis of Sjögren’s syndrome before you get appropriate treatment. Don't be afraid to speak up.

Here's a list that many doctors use to consider Sjögren’s as a diagnosis. It is derived from a handout from the Sjögren’s syndrome Foundation that my doctor gave me.

Primary Symptoms

These are the primary dead giveaways:

  • dry mouth, dry lips, dry tongue
  • dry eyes, lack of tears, gritty feeling in the eye

Secondary Symptoms

  • hoarseness, voice breaks when speaking
  • vaginal dryness
  • swollen glands (especially parotid glands in the throat)
  • muscle and joint pain
  • confusion, momentary or long-term (rule out dementia)
  • memory loss, fleeting or permanent
  • difficulty concentrating, especially for 3- to 4-step tasks
  • cavities in teeth, especially when you haven't had one in a long time
  • peripheral neuropathy in hands, feet, fingers, toes
  • anemia—low B-12, low D-3, and low red blood count
  • abnormal levels for Sed rate and C-reactive protein (blood tests)
  • low-grade fevers

Testing for Sjögren’s Syndrome

Since dryness can come from other medical conditions as well as being a side effect of certain medications, dryness is considered to be a criteria marker to consider in addition to other symptoms.

There is no one test for Sjögren’s syndrome.

There is no cure for Sjögren’s syndrome, but it can be managed with lifestyle changes and medication.

A rheumatologist is the specialist you would consult for Sjögren’s syndrome, not necessarily a neurologist. If you happen to get a doctor who specializes in both neurology and rheumatology, DON'T LET THEM GO! They are a gem!

Blood Tests

Eye Tests

Dental Tests

If you have ever used Mirena as a contraceptive, or any silicone-lined product in your body, please check out this link to a blogger who talks about how similar the symptoms are. She has Silicone Immune Toxicity Syndrome.

H-pylori, Gluten Intolerance, and Sjögren’s Syndrome

Results of a study for H-pylori in connection with Sjögren’s syndrome indicate that primarily women over the age of 40 get Sjögren’s syndrome, usually during or after menopause.

If you suffer from gluten intolerance, heavy metal toxicity, other food sensitivities, or have been diagnosed with another autoimmune disease, the study has some interesting results and conclusions.

Treatment for Sjögren’s

Sjögren’s treatment plan http://pain-and-depression.com/Library/sjgrens-syndrome-definition/
Sjögren’s treatment plan http://pain-and-depression.com/Library/sjgrens-syndrome-definition/ | Source
Source

Support Groups

Click this link for support groups for connective tissue disorders, Sjögren’s, polymyositis, Raynaud's phenomenon, rheumatoid arthritis, scleroderma, systemic lupus erythematosus, vasculitis, and more.

Management of Sjögren’s, Part 1

Management of Sjögren’s, Part 2

Patient Studies

If you have ONLY Sjögren’s syndrome and no other autoimmune diseases, the University of Oklahoma is conducting studies to test the effectiveness of new medications. There is a small monetary compensation for your participation. An ophthalmologist, rheumatologist, and oral medicine expert will perform specialized tests (they say they would cost you about $2600), the results of which are yours to keep. Anyone who completes the study will receive nominal monetary compensation for their participation.

If you have multiple sclerosis or symptoms of ONLY multiple sclerosis, they are also conducting studies where you can get a lot of your tests done in short period of time, compared to going to your own neurologist.

Fibromyalgia, lupus, rheumatoid arthritis, and scleroderma are also mentioned on the Oklahoma Medical Research Foundation's website.

Strategies for Success: A Personal Experience

Tips in Addition to Treatment Plans

  • Don't use hair dryers more than you have to, due to dry skin, dry eyes, etc.
  • Use lubricating eye drops when you go to bed to help cut down on "morning crusty eye." Ask for Restasis eye drops if they are not offered to you.
  • Be alert for conjunctivitis (pinkeye).
  • Adding flaxseed oil to your diet may help with overall dryness (skin, eyes, vaginal, etc.)
  • Using a cool mist humidifier while you sleep can help keep body tissues moisturized so you don't wake up with dry mouth, cracked lips, or crusty eyes.
  • Use glycerin swabs to swab your mouth several times a day if you don't want to drink gallons of fluids (which causes you to take frequent bathroom breaks).
  • Always keep something on your person for cracked lips (Avon Dew Kiss lip balm is a great moisturizer and doesn't have tons of wax in it like other over-the-counter lip balms).
  • Invest in a neti-pot if you don't want to use saline-based nasal sprays to keep nasal passages moistened.
  • Always use a vaginal lubricant before intercourse, before long vehicle rides where you will be sitting for a long time, and whenever you are taking a course of antibiotics (all cause dryness).
  • Ask for Plaquenil to combat fatigue and joint pain.
  • The Mediterranean diet is best, because it features minimal processed food along with an exercise program.

There are prescription medications to stimulate the salivary glands. Only you and your doctor can determine if they are right for you. However, they should be considered when other options have failed, or if dental issues become a problem. Above all, keep up with oral hygiene, because there can be complications of the salivary glands that can lead to surgery or other diseases.

Here's a link to read about recent studies with rituximab (Rituxan) used to treat Sjögren’s.

Tennis Pro Venus Williams Talks About Her Sjögren’s Syndrome

Diagnosis of one autoimmune disease often attracts more autoimmune diseases.

Do you know anyone with Sjögren’s Syndrome?

See results

© 2014 awordlover

Comments

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  • awordlover profile imageAUTHOR

    awordlover 

    4 years ago

    #lambservant, I shared in my own hub today about my journey with Sjogren's. I had never heard of it before either or knew anyone who had it. After I was diagnosed with it, all of a sudden I was hearing people say they had it or knew someone who did.

    I was treated for Lupus and MS and for a short time Fibro was mentioned. I didn't have any of those diseases but I was on heavy duty toxic drugs for 8 years because I didn't know any better.

    It wasn't until awordlover said maybe I didn't have MS, maybe it was Sjogren's. No doctor had mentioned it. My biggest most troublesome symptoms were dry eyes, mouth, nose, even down there (!) - just everywhere. I wasn't taking a lot of medications in the early years. Allergy for season changes, aspirin, vitamins, but nothing that would cause the amount of drying out I was dealing with.

    When we moved so much because of my husband Joe's job, the climate changes made all the dryness worse and of course Michigan being freezing in winter didn't help my joints at all. I have been healthy all my life, unlike awordlover who had MS for so many years and Celiac and Crohns.

    I never thought any of my symptoms were really bad enough to be called a real disease, just a nuisance because of environment (home products, food, etc.) and weather changes.

    As I got older, it all got worse and menopause didn't help one bit after I went off the estrogen. While I had estrogen I was ok, but lack of estrogen made everything exaggerated.

    I'm a bit older than awordlover was. I'm 67 now but I was diagnosed with Sjogrens in 2008 after so many years of misdiagnosis. It is far too much to go into here, but I wrote my own article if you care to read about it there.

    I want to say that dry eye and dry mouth are the symptoms most patients complain about the most and that are the dead giveaway and if you have the salivary gland biopsy it will confirm or deny.

    If you do have Sjogren's, the medication is very easy to tolerate and I'm telling you, I go through my days and don't have much to complain about at all. Gluten elimination happened early in my house back in the 1980s so that is a big recommendation. I use Restasis drops now, but before prescription drops, I couldn't buy enough Visine and Murine. I had a bottle in every room in the house, in the 2 cars, in my weekday purse and travel purse. Thank God that dollar stores carried eye drops for a buck.

    I have GERD too and nexium takes care of my reflux problems. I went into menopause because of surgery at age 44. But I had symptoms long before that.

    I just never knew there was a disease that went with the symptoms. On my hub I listed all the tests that can be done - about 8 of them and exactly how they are done so there is no mystery.

    3 will give a positive for Sjogren's. If 3 of the 8 don't, then it isn't Sjogren's and possibly just because of medications and environmental stuff.

    The only way you will know if medications are causing your problems is to do it under a doctor's care - a taper off, then stop them for a while and see if you get better.

    Good luck in your journey and I hope you have some answers soon. Thanks for reading.

    Rachael O'Halloran

  • lambservant profile image

    Lori Colbo 

    4 years ago from Pacific Northwest

    I've suspected possible Sjogren's. I got a 12 on the quiz. I did not know there are tests you can take. The problem is many of those symptoms could indicate any number of conditions or be side effects of medications one is already on. For example, since I got on certain medications, I have dry mouth, which of course increases tooth decay. I've had reflux for years. I am 58 and some of these could be post menapausal issues. The one that has me unders suspect is the eye symptoms, which had the most points. For a number of years they just start burning really bad and I can hardly keep my eyes open when it happens. Makes it difficult when you are working. I will watch it though. The doctor in the past has said I have dry eyes and gave me or recommended drops which burn and don't really help that much.

    This is a very informative and comprehensive hub. Thanks.

  • awordlover profile imageAUTHOR

    awordlover 

    4 years ago

    ologsinquito, the frustrating part is getting the diagnosis to put a name to what you have, then getting medication adjusted. After that it is much easier to live with. Thank you for reading.

  • ologsinquito profile image

    ologsinquito 

    4 years ago from USA

    This must be a very uncomfortable and frustrating disorder. You did a very good job explaining the symptoms.

  • awordlover profile imageAUTHOR

    awordlover 

    4 years ago

    Hello Audrey, I agree -- awordlover had a way in her writing that made you think she was speaking directly to you. I read that all the time in the comments on her articles. I am trying very hard to emulate that style, but I'm not as knowledgeable about all the topics she wrote about so well. We all have something we are good at, and medical articles was her niche. It certainly isn't mine when you read my hubs. lol This disease is a subject close to me too and if it wasn't for awordlover doubting my neurologist's 1999/2000 diagnosis of Multiple Sclerosis and Lupus, I would still be believing him. I was diagnosed with Sjogren's in 2008. I am thankful that I now have the right diagnosis and that it is treatable with medication. Most of the time I have little or no symptoms. I hope your friend is managed with medication and some lifestyle changes. Thank you for coming back to comment and for pinning it on Pinterest.

    Rachael

  • brakel2 profile image

    Audrey Selig 

    4 years ago from Oklahoma City, Oklahoma

    Hi - I read this hub and pinned it last night, so am now here to comment. Awordlover has done a super job with this subject. I have a friend with the disease so am familiar with the symptoms. She covered it so well, and made me feel like she was talking to me. I also read another of her hubs and pinned it and must now comment on that comprehensive one. Blessings, Audrey

  • awordlover profile imageAUTHOR

    awordlover 

    4 years ago

    Jackie and Made, this disease masquerades as so many others, it is not one that doctors think of right away. Thank you for reading and sharing the hub.

  • Made profile image

    Madeleine Salin 

    4 years ago from Finland

    This is a very well written hub. I didn't know much about Sjogren's symdrome before I read this. I know a couple of people, who have this disease. Voting up!

  • Jackie Lynnley profile image

    Jackie Lynnley 

    4 years ago from The Beautiful South

    Thanks for sharing this. We never know who we may help with information shared. Sharing this and voting up.

  • awordlover profile imageAUTHOR

    awordlover 

    4 years ago

    Sparklea, I'm so glad to meet you. I met awordlover in 1985 when we both had a baby in the same hospital. She already had MS by that time for about 10 years. I did not have any symptoms. I was just a dead on her feet mom of 5 kids by that time.

    About 10 years later, my fatigue took on different proportions and I developed foot drop, unbelievable brain fog and then very bad swallowing problems. I went to so many doctors trying to find out what was wrong and each one had a different diagnosis.

    Finally I was diagnosed with MS in 2000 but, I wasn't so sure about it. My ANA was positive at 1:280 which meant it was possible, but I wasn't convinced. My MRI showed brain lesions, but I had a mild stroke during a hysterectomy surgery several years before and the brain lesions were from that. I looked at other people; they had some of my symptoms but not others. I had more troubles with my eyes than they did, but my neuro insisted I had MS.

    Anne and I lost touch because I moved away from Philadelphia to California. We met up again online when she moderated a website called Ask the doctor, and I was a nurse who fielded all the queries before they were submitted to the clinician. I helped her for about 10 years on that project until her death.

    With her knowledge of MS, and from talking to me on phone and in internet chats and listing my symptoms, she felt sure that I had MS too.

    But when she and I spent about a month in each other's company in 2008 she said, "You know, I don't think you have MS at all. It looks like Sjogren's."

    On her advice I changed from a neurologist to a rheumatologist who specialized only in certain autoimmune diseases. After two visits he said he was positive I had Sjogren's but he still did a month of testing to rule out everything else.

    I take plaquenil daily, restasis for the annoying eye grit problem, and Rituxan and I haven't felt this good in years. I will be forever grateful to awordlover's keen eye of observation.

    Sometimes a doctor only looks for the obvious - until it is suggested that maybe there is some other disease or disorder to consider before telling a patient they have a disease that they will be living with for the rest of their lives.

    I'm following you from my own account now and I appreciate you leaving your detailed personal comment here. I'm glad to meet someone on HP who knows what Sjogren's is like. I will probably write on my own HP account about Sjogren's in the future. I'm just getting started there.

    Thank you Sparklea,

    Rachael

  • Sparklea profile image

    Sparklea 

    4 years ago from Upstate New York

    awordlover: Voted up, useful and interesting. I am very familiar with this disease. Scored 9 on your test. I have been tested for Sjogren's, blood work negative. I have a positive ANA but it is low: 80. Because I see a rheumatologist about once a year, I have researched Sjogren's and other autoimmune diseases. I want to thank you for the time, research and sincere effort you put into this excellent hub. It is a topic that needs to be addressed. Autoimmune diseases, in my opinion, are difficult to diagnose. Your information is off the charts. God bless, Sparklea

  • awordlover profile imageAUTHOR

    awordlover 

    4 years ago

    Vellur, Thank you for reading and leaving your comment.

  • Vellur profile image

    Nithya Venkat 

    4 years ago from Dubai

    Never heard of this syndrome, thanks for sharing this. Great hub, useful and informative.

  • awordlover profile imageAUTHOR

    awordlover 

    4 years ago

    DDE, Thank you for your comment.

  • awordlover profile imageAUTHOR

    awordlover 

    4 years ago

    Jodah, Thank you for your comment

  • DDE profile image

    Devika Primić 

    4 years ago from Dubrovnik, Croatia

    An informative hub on Sjogren's Syndrome the facts should be considered by all. You have created a useful hub on important health information.

  • Jodah profile image

    John Hansen 

    4 years ago from Queensland Australia

    Very well written hub. I had never heard of this disease before, but thanks for the useful information.

  • awordlover profile imageAUTHOR

    awordlover 

    4 years ago

    FlourishAnyway, Thank you for your comment

  • FlourishAnyway profile image

    FlourishAnyway 

    4 years ago from USA

    This is helpful information. Thank you for being so thorough.

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