Tuesday

SYMPTOMS OF SJOGREN'S SYNDROME

Symptoms of Sjogren's Syndrome (SS) vary from person to person. No one person has all the symptoms listed. Some people have mild dry mouth and eyes and extreme muscle pain and others have only dryness and no muscle pain, making SS harder to diagnose.

Signs and symptoms of Sjogren's Syndrome may include:

Dry eyes
Dry mouth
Light-sensitive eyes
Corneal ulcers
Fatigue
Enlarged glands — especially salivary glands, located behind your jaw and in front of your ears
Difficulty swallowing or chewing
Change in sense of taste
Hoarseness
Oral yeast infections, such as candidiasis
Irritation and dryness in your nose
Dry skin
Skin rashes
Vaginal dryness
Dental cavities
Dry cough
Joint pain, swelling and stiffness
Muscle pain - especially on use
Nerve pain
Damage to tissues of lungs, kidneys and liver

While Sjogren's Syndrome cannot be cured many of the symptoms such as dry eyes and mouth can be managed.

48 comments:

  1. Hello from Canada,
    Thank you for this blog. I have struggled with Sjogrens for many years and am having a bad flare up right now. It's comforting to know that I'm not alone. I had a dental cleaning and it has triggered a flare up. I was wondering if you have this happen or have heard of this happening.
    Thanks,
    Jennifer

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  2. yes Jennifer, Hi, and yes I have had a flare up of peripheral neuropathy associated with Sjogren's when I had a pedicure! Could not believe it and it lasted a while too. So I presume it could definately happen with dental cleaning. Hope you are feeling a bit better.

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  3. Hi, I'm new here and was wondering if anyone has severe muscle pain on top of shoulders?

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    1. Yes I do and am currently seeing physio for it. He mainly just massages and he says it is inflammation.

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  4. Scheduled for testing for Sjogrens. Salivary gland biopsy, eye tests and bloodwork. Not convinced this is what I have. Fatigue is my number one complaint along with muscle pain. Told the doctor the I feel like I have the Flu all the time. Never feel rested. I do have dry mouth but never thought much of it. Depression and anxiety have been horrible. I also feel short of breath with minimal activity. Brain MRI showed white matter lesions and my serum IgA is double the high normal. Does any of this sound familiar??

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    1. OMG - I just found this blog - I was diagnosed with sjogren's over 10 years ago by an ENT after a dentist, eye doctor and primary had no clue what was wrong with me - dry eyes, dry mouth and dry skin. Two years ago, I had a CAT scan of the neck and by accident, it went up too high and picked up a benign brain tumor but it said I had T2 and white mater lesions - so is this part of the tumor or from having sjogren's? I also have TMJ so there are days I want to rip my entire face off. I also have arthritis and osteoporosis so I have pain a lot of time. I've been feeling more tired than usual lately, too - having this syndrome just plain sucks, especially since there is no known cause or cure

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    2. Hi
      I have had a lump on the left side of my face I have had it for about six years I came to live it the last one year it started acting up becoming tender and then going down in swelling anyway I had a biopsy after not really wanting to and a blood test all the dry mouth and dry eyes and hardly sweating symptoms I am a little sore in my kness sometimes but nothing too much to worry about but the problem is that crazy lump on the side of my face which I tried to ignore at present I am due to have surgery to get it removed I am not sure if I am doing the right thing but sometimes docters take over and you feel as though you have no say. The short of breath is there but all these symptoms seem to get worse more close to my period does anyone else feel as though the symptons get worse closer to period.

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    3. This is how it was for me .. I was ache like the flu all the time in parts of my body .. I honestly thought I was going crazy and dramatizing this in my head - 10 doctors later .. Here I am!

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  5. Sounds very familiar in fact extremely familiar, i was the same and did not present with dry mouth only fatigue and muscle pain. I also have these T2 white matter lesions. i think there are quite a few autoimmune disorders that have these symptoms http://autoimmunediseaselist.com/list-of-disorders.php

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  6. I have been diagnosed with Sjogrens also. I have severe muscle pain in the neck and top of shoulders. I don't have a problem with dry eyes or mouth though. Does anyone else just have severe muscle pain and fatigue without dry eyes and mouth?

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    1. That was me, I was shocked when the diagnosing rtheumy put a piece of paper in my eyes to test for dryness as that was not a presenting symptom - just pain and fatigue. I think the pain causes the fatigue. Are you getting any relief from the pain?

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  7. I was diagnoses about 8 months ago but had a positive ANA test 6 years ago. My sed rate for 20+years is always in the 50's. Drs chose to ignore it since its a non specific test. I always have to have water or tea with me. Dry eyes started about a year but now getting worse, I use eye drops every hour and started on Restatis 2 months ago, they say it takes up to 3 months to fully work. I wish it would hurry up! I now have nerve pain in my feet and can not make a full fist due to pain. I wonder if anyone else has this type of pain with Sjogrens? I am beginning to wonder if I do not also have fibramyalgia or RA ...tests say no but sometimes they have to go by symptoms and not actual blood test results! For those out there that are looking for some relief for joint pain, 3000mg of Fish oil does seem to be a good natural anti-inflamaory. It does help me to keep my flare ups under control. But when I am tired or stressed thats when of course I feel it the most!

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    1. I hear you sister, this sounds like me. My dry eyes came late in the picture. Some days, usually nights I can't make a fist and the tingling in my feet never goes. I don't think it matters what it is called they can't seem to treat any of these things! i spent a lot of years looking for a diagnosis and nothing that doctors give me to take helps. A positive attitude and something to do you like helps,

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    2. Hi my name is Kat. I was diagnosed with Sjogrene 3yrs ago when doctor took my bblood plus i have secondary R.A.plus I'm a below the knee Amputee ( left leg) & told me abt it. I have dry mouth really bad, bioten didn't work for me. Restasis well I've been using it as long as 3yrs, i really don't see a change in my eyes. I still can't cry, but i have Glaucoma setting in left eye. My neck hurts,my elbow has tentities. Plaquenil didn't work for me for 2yrs. They took me off. Only meds i use is Gabapentin 800mgs for my stump on amputee leg. I carry water w/me 24/7 or my mouth gets so dry tht i can't talk. Plus I'm dealing w/menopause. My hands cramp up so bad. I was reading up on a site that states that we who have Sjogrene should stay out of sun or make sure ur pretty well protected. I'm in S.Calif. if any suggestions on any of this plz tell me..Ty

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  8. i have scleroderma, or CRESTS, and i am fatigued, have dry mouth and eyes, reynaud's sydrome, extreme muscle and joint pain, headaches, back and neck and shoulder pain. ummm i think that's all. oh, and depression. :). some days are worse than others.
    i am intrigued and fascinated and relieved and saddened to hear of others' symptoms and experiences

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  9. Hello all'

    I am newly diagnosed but have had the pain in my hips and lower legs for years,,,part of fibromyalgia i was told,,,now its believed its both,,,,i dont have the dry eye or mouth as yet,,hoping it stays away a long time,,...my family dr says we treat symptoms and so far all i have it alot of muscle pain, joint pain, am wondering if its why I lost my teeth to dental issues too,,,, not sure where to go from here,,,i am thinking of getting a new dr thta will take things more serious then the one i have,,,,glad to have a place to get info from real people with the disorder,,

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  10. Hello everyone, finally I can post to a blog which everyone can read. I have been suffering with SS since a teenager but just got diagnosed 4 years ago. My biggest thing right now besides the pain, swelling, labored breathing, constant coughing, pain in eyes due to dry eye, is my teeth....no matter the attention-to-detail dental hygiene I am loosing my teeth and my dentist said it's just a matter of time before I will have to get all my teeth pulled. I was even told by the dentist that false teeth would be hard for me because I don’t have any salvia to keep the teeth to my gums. I have already spent over $8,000.00 trying to preserve my teeth to no avail. I have seen many dentist and none of them have even heard of SS. Drinking water makes my mouth even drier. No over the counter sprays, gums, or toothpaste rids me of dry mouth. I need help!!!!! I don't want to loose all my teeth my mother spent too much money for braces and headgears etc. If you all haven’t experienced this yet believe me you need to start paying attention especially if you have chronic dry mouth. Is there a dentist out there that can help???? I live in Atlanta, Georgia. Thank you. sincerelydiane@yahoo.com

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    1. I am starting to hear this, more and more with Sjogren's, that people's teeth are falling out! So distressing. Hope you are going okay.

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    2. Hello I read your brief and just wanted to share. I have lost 5 thus far. Thousands as well. My Mom had us at the dentist and hyg. always. I continued good oral care as a adult as well. SSyndrome is like.....(let me get back to you on that) because there really is not a word to describe it.
      For me there was a loss in saliva and dryness. A pattern. I was rejecting the tooth after a root canal or older root canals. So they stoped RC. Just removed. Remember all people are different with this SSyndrome. For me DRS agreed no implants. My dentist office put a plan together. I call it the just in case plan. They are making a partial for my mouth. Its taken all summer... Snaps in and out can be added onto. With each little thing that I encounter with this dis. over the past 10 years. Is management and possitive thoughts. For me its good Food. Attitude. Excercise Excersise Exercise! GO GIRL and dont ever stop smiling.

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    3. (cont) PS. I hope this helps a little. xo M

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    4. One word, "Salagen". It's a life saver for me for dry mouth. I take it three times a day.

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    5. I take Pilocarpine HCL 5 mg twice a day. Does a great job of keeping my mouth wet.

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    6. Hi, I was diagnosed with SS in November of 2010 and have had good days and anxiety filled bad days. I cope and deal with the flare ups because of my children. This i find keeps me thinking positive and gives me a reason to get out of bed every day when things are bad. I too take Pilocarpine HCL 4mg. what a great little pill. Has also improved my dry eyes. I now only put drops in the morning when I wake up and the last thing at night before I sleep. I live in Botswana, Southern part of Africa which has a dry hot climate almost all year round. The pilocarpine is the way to go.

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    7. Apologies all, I meant to say Pilocarpine HCL 5mg NOT 4mg...typo!
      Girl from Botswana

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    8. Hello, I have been diagnosed with Sjogrins for about 17 months. But I have other autoimmune issues. CIDP. Hashimotos, Adrenal Gland Insufficiency and Sjogrins. I also have been infused with mold by accident. (whole other story) For the past 3 weeks I have had low grade fevers. Severe bilateral knee pain and severe fatigue. I fall asleep and then twitch then wake up. Drives me crazy. Does or has anyone had fevers with their flare ups? My WBC's are normal I just can't stay awake and can't get the fever to go away. Any ideas from you all would be great. I have been to the ER twice because if the fever goes over 100.4 I need to go in because of the mold. I just can't seem to get this straightened out. My teeth are rotting too! I wear a partial for my back teeth but I am sure soon my teeth will be all gone. I am only 50 but look like I am in my early 40's, I at least have that on my side. I don't look ill and that throws people off at times.

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  11. I was diagnosed in 2010 I had servere pain in my hands but I've been having forearm muscle pain. It hurts so bad that it leaves me in tears and over the counter medicine doesn't help this has happened twice within 6 months and I'm not having a flare up when this has happened to me. Just wondering if anyone has experienced this also and if they have any suggestions???

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    1. Some meds can cause muscle and bone pain, you should check that. My forearms were hurting (to the bone felt like a tooth ache in my arms) off and on for a long time but haven't hurt for a few months now.

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    2. I get this too but keep in mind that you may need to be retested for other conditions as people with one autoimmune condition often get another one. A good site with symptoms is http://autoimmunediseaselist.com/neuromuscular-disorders.php

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  12. While visiting a clinic for menopausal symptoms, i began to explain about my chronic dry eye (we are talking 20 years folks, of having my eyes glued shut throughout the night and PAINFULLY gritty!) The nurse was the first to suggest Sjogren's, something I'd never heard of. (BTW Rheumatoid arthritis runs in my family) After that suggestion, I began to notice how dry my mouth was at night too, and achy joints, dry itching ears (haven't produced wax since I was a young woman), trouble swallowing, debilitating fatigue, tingling hands and feet, and on and on and on. Up until this point I accepted all these discomforts as a normal part of growing older. They had been with me so long I just thought it was normal. Wrong! Anyway it all began to make sense. The pieces of the puzzle were coming together. I have not been officially diagnosed, but I can do the math. Anyway, recently to deal with my 50 year old body gaining some weight from high blood sugar I started taking Gymnema 3x day, and drinking Matcha tea 3x day (both of which happen to be, in addition to blood sugar regulators, very anti-inflammatory and high in antioxidants). Also, I began to drink 2-3 liters of water a day. Lo and behold, a week after this regime I began to notice my dry eye and dry mouth are less problematic. I still wake up with eyes glued, but as soon as I rub the corners they begin to tear up. I haven't had to use eye drops for 3 nights now! Yesterday, my right eye was tearing all day and I had to keep wiping it! Hallelujah!!! If you suffer like me, you will realize what a miracle this is!!! So, give it a try. Maybe you'll get a little relief? I am excited to see what happens as I continue this regime! Hope this helps someone!

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    1. Don't ignore the dry eyes. It can lead to corneal abrasions. At the very least you should use liquigel during the day and a nighttime ointment at bedtime. If this does not work you might want to start Restasis

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    2. Great news Anonymous April 7, 2014. sounds like a good thing to try. Have not heard of Gymnema or Matcha tea. Will investigate

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  13. Thank you so much for taking the time to share such a nice information.Permanent Hair Reduction Delhi

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  14. Did a search for Sjogren's blogs and yours was the first to come up. Currently I'm waiting on the blood test to see if this is what I have. My husband's niece was diagnosed about four years ago, and ever since then I have been connecting the dots on my own symptoms. I started coughing 25 years ago and have gone from doctor to doctor trying to find the reason for it. Even though you could hold my symptoms up against the typical Sjogren's symptoms and have a perfect match, no doctor was willing to suggest it. In desperation las week I went into a trusted wellness store and asked for the name of a reliable naturopath. My friend was working and she referred me to an angel on earth! After interviewing me and reading my list of symptoms for less than an hour she asked if I had ever been tested for Sjogren's. I shed tears, well as many as I could shed! There are some herbal helps for the dryness, I can't wait to see what my new doctor has to show me! Trying not to be bitter at being passed off for 25 years.

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  15. I have recently had a salivary biopsy and my mouth has been dry for about 2 months now. Has anyone else had one? I am about to go crazy and very fatigued!!

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  16. I was diagnosed with SS in 1984. I use Restasis for my dry eyes, Biotene Oral Balance for my dry mouth, and Biotene Toothpaste. I visit my ophthalmologist twice a year and the dentist, four times, so I don't have any cavities. I was on Prednisone for 8 years but a new rheumatologist changed me to Plaquenil. I haven't had any swollen gland since ten years ago, although my muscles and shoulders are aching a lot since last year when I had a tear tendon. Whenever I had a my parotid glands swollen all I did was to apply warm water and it solved the situation. I haven't felt fatigued for more than five years. But my muscles ache a lot, I take Aleeve.

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  17. I was diagnosed with Sjogrens in April of this year. I have severe pain in my feet, knees and hips. I stay fatigued and feel depressed and on the verge of tears all the time. Just recently on December 2 I lost the hearing in my right ear. They diagnosed this as auto immune ear disease and treated it with a high dose of prednisone which ended me up in the hospital, it tore up my stomach, but my hearing did come back slightly. With the hearing loss came severe neck pain, feels like crick neck. I also take the Plaquenil, after many months it has seemed to help on the fatigue. I like all of you am sick to death of feeling so bad. Wish there was a miracle cure.

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  18. good SYMPTOMS OF SJOGREN'S SYNDROME

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  19. I am currently suffering with numerous symptoms that started years ago but I always thought it was stressed induced or I wasn't getting enough rest. Over the past year it has gotten unbearable. I was diagnosed with TMJ several years ago, this fall I was in so much pain that I insisted to my dentist that my teeth had to be infected. I was assured my teeth were fine and that I needed to make an appointment with my pcp regarding the TMJ. The following week my face swelled up, I couldn't open my mouth due to the lockjaw. I have been on several antibiotics, emergency root canal (later informed it was not needed), CT Scan with normal results, gum biopsy showing acute and chronic inflammation of unknown origin. I am living in constant pain with severe head aches, jaw mouth, dry mouth, neck and should pain. The dentist, endodontist, and oral surgeon have all discussed Sjogren's with me. I met with my PCP and was told that she feels that I do not have sjogren's or any other autoimmune because my wbc, hct and abs. lymps were low and my monos were high, but nothing that out of the ordinary and the ana dilution was negative with my level being <40. She reluctantly is referring me to an ENT. Do any of these symptoms sound familiar? I am starting to think I am going crazy.

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  20. Does anyone have Restless leg syndrome or bruising for no reason?

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  21. Does anyone have Restless leg syndrome or bruising for no reason?

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  22. This comment has been removed by the author.

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  23. some of the most common causes include trauma, general wear and tear, and of course, ENECK

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  24. Most of the neck pain happens due to wrong choice of pillows. You are a great blogger, who are helping others in choosing right pillow just like a pain management doctor. I think everyone must visit web health network before buying a neck pain pillow.

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  25. Any damage or unsettling influence to the delicate tear film of the eye causes a condition called “Sjogren’s Syndrome. There are some of Sjogren’s Syndrome Natural Remedies are mention below for the natural treatment of Sjogren’s Syndrome that are Eye Hygiene, Cucumber, Castor Oil, Cold Milk or Rose Water, Aloe Vera, Warm Water.

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  26. Unfortunately, as with many autoimmune diseases, there is no known medical treatment and medication for this condition; Sjogren's Syndrome Natural Treatment can only lessen the severity of the symptoms and support the body’s general health.  Now, let’s take a look at some of these alternative treatments for Sjogren’s Syndrome.

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