April Awareness: Let’s Learn About Sjogren’s Syndrome

 

Every month has awareness about something, sometimes several things. April is no exception. April is the awareness month for Autism, Child Abuse, STD’s, IBS, Parkinson’s, Rosacea, and the list goes on and on. I am going to talk about one that is not often heard of, Sjögren’s Syndrome. According to Sjögren’s Syndrome Foundation (SSF) is often overlooked or misdiagnosed because it it mimics other conditions, and it takes, on average, 6-7 years to be properly diagnosed.

Sjögren’s is pronounced Show-grins. Sjögren’s Syndrome is a chronic autoimmune disease. In Sjögren’s the bodies white blood cells attack the moisture producing glands. Sjögren’s is often associated with other connective tissue disorders such as Marfan’s, Ehlers Danlos Syndrome, Rheumatoid Arthritis, Lupus, or Scleroderma. Sjögren’s is a systemic, meaning it can affect the entire body. Typically a dentist or eye doctor are first to notice and suggest Sjögren’s.

The main characteristic of Sjögren’s, that is most often overlooked or dismissed, is dry eyes and dry mouth. Sjögren’s may stay the same, worsen, or on rare occasion, go into remission. Sjogren’s may cause issues with a person’s kidney’s, lungs, liver, pancreas, blood vessels, gastrointestinal system, and central nervous system. Individuals with Sjögren’s may also experience joint pain, extreme fatigue, and are at a higher risk of lymphoma (lymph node cancer). The many ways that Sjögren’s may present include, but are not limited to:

• Dry mouth

• Dry eyes

• Dry skin

• Recurrent sinusitis

• Nose bleeds

• Concentration/Memory (Brain Fog)

• Raynaud’s Syndrome

• Heartburn/Reflux

• Arthritis/Muscle pain

• Peripheral neuropathy (numbness and tingling in extremities)

• Abnormal liver function tests

• Vasculitis

Dry eye’s and mouth are typically the first symptoms but are often dismissed as being due to other things such as medication side effects, which is what the author experienced. However, eye issues are not limited to dry eyes but also includes a burning sensation, itchiness, sensitivity to light, visual fatigue, a sandy/gritty feeling, and blurred vision. Much like the eyes the symptoms of the mouth is not just dryness but also, burning feeling or pain, trouble swallowing, change in sense of taste, dry/cracked lips, increased tooth decay, and cracks on sides of mouth.

Sjögren’s Syndrome Foundation, (April, 2010). Accessed on website http://www.sjogrens.org/home/about-sjogrens-syndrome

 

Article written by Suzanne Moore 

Suzanne is a wife, mother, employee, patient, and EDS advocate. She has two daughters, one with Autism Spectrum Disorder. She was diagnosed with EDS (Ehlers Danlos Syndrome) in 2008 after a life time of pain and now has severe Osteoarthritis in most joints. She can be found on Twitter @MeriLizzie

©2019butyoudontlooksick.com
  • Kathy

    Find a support group both online and offline. Keep as positive as you can… listen to Youtube videos such as Nevillution; Neville Goddard, Bruce Lipton, Louise Hay to help you heal. Focus on health, focus on positives despite what you are going through with disbelievers. I believe you. More importantly, YOU know what you are going through. See a good Naturapath, get accupuncture, change your thinking for the better <3

  • Judy Hall

    Thank you so much for your response. I had a male friend come visit me yesterday and he actually saw me having my tremors and he hugged me and he rubbed my hands as they shook and I cried. He said don’t worry I will never leave you because you have a disability I love you. He asked if it helped when he rubbed my hands and I said yes. It was so nice to feel someone finally show they care. I wish that for everyone. Thank you Yvonne for caring also.

  • yvonne sherwood

    Judy, hi I saw your post and created an account just so I could reply to you. I am So sorry that you are being treated so poorly. I too have family that discuss me instead of speak to me. The diagnosis’s keep getting more for me as well. I’ve tried explaining my theory of it ( autoimmune illness) should be thought of as a large spectrum. And on the left side you will find something like a diagnosis of fibromyalgia and towards the right end a diagnosis of something like Parkinson’s. My symptoms have led me down this horrible, painful, isolating path of diagnosis’s from each end of that spectrum and just because one diagnosis has been given after another, that does not negate the previous. I can just tell you, you are not alone. Keep fighting, do not give up the hope in your heart of finding someone in your life that gets it. Big gentle hugs! You will be in my thoughts and prayers.

  • Judy Hall

    I have been diagnosed with Hoshimoto, Alopecia, Sjogrens, Osteoarthritis, and now yesterday was Parkinson’s. Friends and family are accusing me of being a hypocondriac because of all my illnesses. It really hurts. How could I be a hypocondriac if all testings have proved I have these diseases. A friend yelled at me today calling me a hypocondriac and saying I don’t have Parkinson’s because it came on to quickly. So I am making it up. This hurts but maybe I need to find new friends. How do you handle it when people think that of you?

  • Jan

    Hi I am not a medical professional, nor would I want that responsibility…. but if you look really closely at your symptoms you should be able to drop the dx of Fibro… Ss = (Sjogren’s syndrome) is the real deal where fibro is what the Medical community refers to as a Dump Dx (dx = diagnosis). you have less credibility maybe even lose it if you mention this “i have fibro” to a doc if you mention ” I have Fibro ” now please bear with me… I have personal experience with this. It is very true ask your healthcare provider to be and speak frankly with you. This will hurt at first to hear, but to have more dx, does not get you better treatment, it works the opposite… be concise and precise, you will be respected and listened to as a patient….. just try it… the freedom that comes with it is so liberating.. I just wanted to Share.. good health to you

  • heather foote

    thank you all for your comments and inputs. I also have sjogrens and fibro. It has afected every part of my body and I mean every part, I woke up this morning with the worst massive headach i have ever had in my life. I couldn’t even yell for help. the pain was so bad I passed out and woke up a couple of hours latter. I was so scared. I was tested for air traping and asthma before all of this, now I have to wonder if it is the fibro and sjogrens causing me not to be able to breath right. I also feel like all of my insides are swelled. I even have a large hard mass on my upper right side that disapears when I sit down, but I can still feel like it is scrapping against my rib. I get really tired. I mean really tired. I feel like i need to pass out at times and I can sleep all day. very hard to wake up. the eye doctor tested me for cronic dry eye and now I have to use drops 2x a day for the rest of my life. It really sucks. thank you all for your comments. at least I know I’m not alone.

  • Gigi

    Thank you so much! I am not crazy! I really do have all these symptoms. I hate to sound happy but what a relief. I have to change doctors, even he didn’t believe I had all these at one time and he diagnosed me!!!!! Wouldn’t wish this on anyone!!!

  • Joan

    late 2007 I was diagnosed with Sjogren’s Syndrome, Osteoarthritis, CFS,Depression & Migraines. 2008 I was diagnosed with Acid Reflux, Fibro & Angle Closure Glaucoma. More recently I was diagnosed with Cataracts, Bursitis, Gout in my left knee,I also have bursitis in my shoulders. Pre-existing health issues are Scoliosis & Mitral Valve Prolapse. Other than that I am great lol. I was diagnosed also by my Rheumatologist, she did the blood test and my ANA was positive for Sjogren’s. hypersensitive nerve pain and numbness in my face. They thought I had MS at first & sent me to the Big University hospital in Vancouver called UBC Hospital and it was confirmed that I didn’t have it. I’m also on Plaquenil & when I was at my Ophthalmologist getting my eye check due to being on Plaquenil is when he found the Glaucoma & Cataracts. My SS symptoms are not limited to dry eyes & mouth. I get the swollen glands in my neck, my hair is half the thickness it used to be, because it comes out all the time. it seemed to stop for a while but it has started back again. evenly not in clumps thank goodness. I also have the joint pain, extremely dry skin, the inside of my nose is always dry and sometimes bleeds, I have a sore in my nose also that re-occurs. with the fibro I get the widespread muscle pain. Oh and lets not forget the fibro fog OMG that one is bad. I have trouble walking around at times as the Arthritis is bad in my knees and left hip. In short I’m a train wreck lol. I know many think I’m just a hypochondriac because non of it is visible. I’m not as defensive and upset as I use to get when people would say maybe get out in the fresh air and exercise and I bet you will be fine. How ignorant people are without even knowing it. There are days (many of them) when I can barely walk around. I am so limited to how I can interact with my Grandchildren as well. Anyway I recently got approved for the Health Canada Medical Marijuana Program, so I am giving that a go for the pain, glaucoma etc. I don’t smoke so I bought myself a Vaporizer last week and it works great. its called The iolite its portable and looks like a walki talkie. It is always good to be able to have others to relate too. not that I would wish this on anyone, but seeing as we do have it, it’s good support.
    Thanks for listening to me rant 🙂 I’m also on Twitter @mudpupblues

  • Mandy

    Ive had a diagnosis for 18years, when I was also diagnosed with Lupus & never before has anybody mentioned that sjogrens is resposible for nose bleeds!!

    Hate the sandpapering the eyelids every time I blink & the constant thirst.

  • Jen

    Is it a rheumatologist the one who usually makes the diagnosis? The more I read, the more I think I may be a sufferer.

  • Ailsa Price

    Sjogren’s is one of my diagnosis. I have every symptom on the list except dry eyes and dry mouth, go figure. I also test positive every time I go for blood work; which is typically bimonthly. If anyone wants to discuss symptoms you can find me @ Twitter @urkdingright

  • Kelly

    My symptoms started very slowly and worsened very fast. I had bloodwork done and the ANA indicated possible Sjogren’s. I saw a rheumatologist who diagnosed me with Sjogren’s, but I wanted to know for certain. I had the salivary gland biopsy done. It was quick and easy and I got a definitive yes to Sjogren’s. I have also been diagnosed with Fibromyalgia. What bothers me the most is people think Sjogren’s is just dry mouth and dry eyes, but the stiffness, muscle pain, fatigue is what really gets me down. What I don’t usually hear mentioned from others with Sjogren’s is the threat of non-Hodgkins lymphoma. I had a scare with that and am still not in the clear.

  • 30% of people with Sjogren’s have negative bloodwork (same as Rheumatoid Arthritis). A lip biopsy is definitive but I really don’t want one. If it walks like a duck, talks like a duck… I was diagnosed by a rheumatologist 6 years ago and I have never had positive bloodwork (nor did I the previous 15 years with the diagnosis of fibromyalgia). It’s been a long road and while the diagnosis of Sjogren’s gets a little more respect, I am still just treating symptoms. Thanks for the great article. While the symptoms are similar to fibro, there are some serious issues with Sjogren’s that need to be monitored.

  • Jen

    Is it only diagnosed for certain through bloodwork? I’ve been tested twice – once by a GI and once by a neurologist. The labs came back normal each time, but I am having more and more symptoms. They can all be explained by other things (age, medication s/e, etc). I just wonder….

  • Kitty

    My mother was diagnosed with Sjogren’s Syndrome a couple of years ago. For her, the symptoms have been quite dramatic and although it seems to be better controlled now, it has taken a long time to get to this point and it does seem to fluctuate in severity. Because I have Ehlers-Danlos Syndrome (inherited from my dad’s side), I got tested as soon as I found out she’d been diagnosed and I get retested every year. I have a lot of symptoms that could be my EDS, my POTS or a sign of Sjogren’s Syndrome. It really is “one of those illnesses” that are so difficult to diagnose, most doctors don’t even think of them — although, many systemic auto-immune disorders are =/ Thanks so much for posting this <3

  • Renee Culverhouse

    I was diagnosed with Sjogren’s Syndrome about 5 years ago. Since then I have also been diagnosed with Hashimoto’s Thyrhoiditis and Fibromyalgia. One symptom that is not listed above is pleuritic pain. This pain around the lungs can be mistaken for other causes, but it was the factor that finally forced me to go to a physician for tests and diagnosis. The pain can be crushing, feeling like broken ribs, and it is often hard to catch your breath. The inflammation of the Sjogren’s Syndrome in the lining around the lungs is what causes the pain. The definitive diagnosis for me with the Sjogren’s Syndrome, when I had the pain, the dry mouth, and the dry eyes, came not with a blood test but from a biopsy of one of the salivary glands in my mouth. Until then, doctors thought it might be lupus because of a positive ANA test.
    I am being treated with plaquenil and prescription anti-inflammatory meds and am able to function pretty well on most days. Thank you for raising the awareness of others about this little-known autoimmune disorder.

  • After many years of Doctors’ not agreeing, last month this was thrown out on the table. The symptoms listed here are dead on. Maybe after all these years I have a name…………

  • isabelle janicaud

    i think id better go see a specialist..you just described all the extras the doctors cant…thankyou