What Is Sjögren’s Syndrome? How to Tell If You Might Have It
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
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:
- Your eyes are dry.
- You find yourself frequently using eye drops (Visine, Murine).
- Your eyes are itchy.
- Your eyes sting.
- You up the numbers on your reading glasses in short periods of time, or suffer from decreased vision.
- It often feels like you have something in your eye.
Sicca: Dry Tongue and Eyes
2. Throat and Salivary Systems
- Your throat isn't exactly sore, but sometimes it burns.
- Swallowing is difficult and can sometimes make you choke.
- You need more fluids to be able to chew and/or swallow food because it doesn't feel wet enough.
- Sometimes food just smells bad when it really isn't bad at all.
- Sometimes foods smell excessively sweet or more potent, like a new vanilla air freshener or warm brownies straight from the oven.
- Your voice comes and goes—more goes than comes.
- You are hoarse and sometimes you squeak mid-sentence or your voice drops a register.
- You never know when your voice is going to give out in the middle of a conversation.
- 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.
- You might start getting cavities when you haven't had one in a long time.
- Your lips need moisturizing balm because they crack, even when the weather is not cold.
- You get mouth sores (canker or cold sores).
- Your nose is dry; you notice less blowing or post-nasal drip than there was previously.
- Your tongue is dry.
- You have a history of bile duct blockages in your liver.
- You have abnormal bilirubin blood test results (always get copies of lab results to keep for your records).
3. Overwhelming Fatigue
- You get so tired that you don't want to get out of bed or get dressed for the day.
- You are not motivated to do even pleasurable activities.
- You feel the need to drink an occasional energy drink.
- You kickstart with coffee, sometimes multiple cups.
- You are not sleepy, just tired.
- You are anemic (take a Vitamin B-12 and Vitamin D-3 blood test for a true result).
4. Memory and Concentration Problems
- 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.
- 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.
- 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.
- Word fishing—when you can't put a name to a person, place, or thing.
- Brain fog—when your thoughts are going every which way, or when you draw a blank.
5. Digestive System
- You notice that you have acid reflux after many meals.
- Sometimes you get nauseous after eating or drinking, even if it is just water.
- You throat glands are swollen.
- You experience heartburn, even after drinking water.
- You have excessive gassiness and flatulence.
- You suffer from gastritis attacks, bouts of pain followed by bowel movements, or irregular or loose stools.
- You suspect food poisoning when you get sick because you feel like you're going to die.
- You suffer from colon issues, such as constipation and gas pain. You may suspect gluten intolerance.
- Many foods you could eat in the past now make you sick.
6. Nervous and Muscular Systems
- You experience muscle weakness, such as dropping things or losing your grip on items.
- You suffer from joint pain (any joint).
- You experience neuropathy (nerve pain as opposed to pain in the joints).
- Your feet are sore and aching, which could be burning or just soreness.
- 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)
- Your nose is dry.
- You experience bleeding or dried blood in your nose, but only when you blow it or when it is dry.
- You experience many sinus infections.
- You have less earwax and fewer nasal secretions.
- Your ears pop more often.
My "total" number of symptoms from the areas above is:
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.
These are the primary dead giveaways:
- dry mouth, dry lips, dry tongue
- dry eyes, lack of tears, gritty feeling in the eye
- 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!
- Anti-Nuclear Antibody Test (ANA)
- Rheumatoid Factor (RF)
- SS-A (Ro) and SS-B (La)
- Erythrocyte Sedimentation Rate (ESR - "Sed Rate")
- Immunoglobulins (IGs)
- Schirmer Test (measures if you produce tears)
- Rose Bengal and Lissamine Green (eyedrops with dye to look for dry spots)
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
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
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?
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