The Australian Sjögren's Syndrome Association
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awaiting ENT referall

Hello,

I'm new to this site but I signed up because I wanted to ask the Sjögren's sufferers out there what they think about my symptoms. I fear I have the autoimmune disease and really just want to reach out to someone who may have gone through the same thing.

So here is my story:

Boxing day 2017 I got ill, I thought I had flu or something, but it didn't get better. I didn't go to the doctors until March where I was diagnosed (after blood tests) with glandular fever / infectious mononucleosis / ebv virus.

I was told there was a possibility of me developing m.e/chronic fatigue syndrome I'm guessing because I kept pushing on in those early days not realising how sick i was.

In May I tested negative for glandular fever, yet still had all the symptoms. I was told if I was no better in 3 months to come back to the doctors.

August 2018 and I went back to the doctors. My doctor wanted to illiminate all other possible causes of my symptoms before doing a chronic fatigue referral which was fine. She put me on a high dose of antibiotics, gave me a special mouthwash and I also had to get some ear drops because my ears were loaded with wax! She said to see her in 2 weeks if none of it worked. As you can probably guess, it didn't.

So I went back last week, and she has decided to refer me to see an ear nose and throat specialist. This is fine because most of my symptoms involved these areas. Since I left the doctors, I found out about Sjögren's and I'm wondering can you get this disease from having glandular fever? Has anyone else developed it this way?

I went to the dentist during may/June some time and she shocked me by saying my teeth had gotten worse. I have ALWAYS looked after my teeth extremely well since I was a child.

I thought maybe I'd become a bit slack with my oral hygiene so I invested in an electric toothbrush, started flossing twice a day and also more recently got this prescribed mouthwash plus some charcoal for the teeth.

But my teeth have been getting even worse despite my best efforts. They are going brown on the gum line and it's very scary, especially when you feel like your teeth should be glistening! I don't drink, smoke and I only have 1 coffee a day. This symptom is what lead me to find out about Sjögren's, and here's a list of my other symptoms:

chronic sore throat (the worst symptom, normally sore throat is worse on one side and sometime when I've exerted myself too much I get white marks on the back of my throat but apparently they're not tonsillitis marks says my doc)

sore throat also hurts when I swallow and talking or singing just makes it worse and worse.

proper furry tongue which I constantly have to brush, it normally goes like a greeny black colour.

sores in the mouth

dry mouth, my tongue feels parched even when I am swishing water around my mouth it just won't absorb anything

The (what looks like) tooth decay.

constantly applying balm to my dry lips

scabs in my nose (from dryness?)

extreme fatigue probably the other worst symptom, effects my every day life and is quite frankly miserable.

joint/muscle aches and pains. normally worsens with activity/fatigue.

my ears have been sore but I think that's due to wax.

that's all I can think of right now but as you can see all my symptoms except the fatigue and aches/pains are all ear nose and throat related.

what are your thoughts?? I'm sorry for the ridiculously long post but I'm really worried especially about my teeth. do you think an ent will know what's wrong with me? And if you have Sjögren's, does this sound like something you've been through?

Any response is hugely appreciated, if you read all of this I'm truly grateful.

19 Replies
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Hi gj1996 Welcome to the site.

Yes...an ENT should be able to tell you if you have Sjögrens and confirm it with a lip biopsy.

My dentist first diagnosed me with dry mouth that my salivary ducts had closed up. He advised Biotene Oral Gel to moisten my mouth.

I always kept sugar free gum once the piece was chewed enough to make it pliable and kept it between my cheek and lower teeth. That helped produce saliva for teens/twenties/thirties. Then when I turned 50 I noticed I couldn’t make tears 😭 I’d always cried like a waterfall so you can imagine my shock 😳 when that produced agonizing pain in my tear ducts instead.

I needed a septoplasty for a deviated septum and was referred to my FANTASTIC ENT. He diagnosed me with Sjögrens and confirmed with a lip biopsy. That was 12 years ago. This site is full of very knowledgeable compassionate members that can give great advise and wisdom from their own journeys with it.

I’m in the USA 🇺🇸 and things are done a differently than in other countries.

Best wishes and take care.

😊🌸🌿🦋🤗💗😘🙏

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Thank you so so much for your response that was quick!! I think I might schedule an appointment with my dentist, and will deffo try that gum trick! Especially as sugar free gum is supposed to help keep your teeth clean.

and also thanks for the gel suggestion I will look into that. now I just really need my ent appointment to come through! I'm glad I found this website, I'm from the UK :)

Thank you for sharing your story with me! I'm 21 and no signs of lack of tears but that's interesting to know you didn't have that for a while.

Thanks again I really do appreciate it.

Take care ❤💙

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You’re welcome sweetie. I have a bad virus atm and I’d be more chatty if not for this.

You’re welcome and I hope you’ll get you’re appt soon and find relief too. Best wishes dear. 😊🌸🌿🦋🤗💗😘🙏

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Hi I have sjogrens. Your symptoms sound different to mine. My tongue is extremely sore feels like it’s burnt. It’s difficult to swallow particularly first thing in the morning because I barely produce any saliva. My eyes are also extremely dry and require constant eye drops and cream at night. Biotiene is really good particularly at bed time. My tongue gets so dry it sticks to the roof of my mouth. Nose is dry too. My teeth are currently ok but I’m expecting that to change. I’m currently waiting to see my rheumatologist regarding further treatment. I am hoping to try Hydroxychloroquine.

My sjogrens was caused by an autoimmune reaction and no ones been able to explain why. I also have autoimmune (hashimoto’s) hypothyroid and suspected autoimmune hepatitis, awaiting further testing. Basically once you have one autoimmune diease you’re more susceptible to more.

How’s your thyroid?

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Oh no it sounds like you've had / are having a really tough time. I hope your next appointment is successful with regards to further treatment.

My thyroid was okay when it was tested back in March, but my mum has an under active thyroid and my auntie has rheumatoid arthritis which led me to believe I could be more likely to get Sjögren's.

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Thank you. You may well be right, I was diagnosed with sjogrens before there was a problem with my thyroid. Did they test TSH, T3, T4 and thyroid antibodies?

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gosh i really wouldn't know the answer to that!

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See my reply to gj1996 about dealing with dryness. In short, Fish Oil or other Omega3 fatty acids, Thera-tears Eye Wash, increasing vitamin D, essential oils and salt-infuser to help sinus drainage, saline nasal spray (make sure you get enough so that you feel it in your throat. They've helped more than prescription drugs. p.s. related to what you eat? Try an elimination diet.

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Thank you SusieW2 it’s kind of you to respond to my post. I think you previously told me about fish oil and omega 3 in a previous post and I’ve been using them for the last couple of weeks. I already take Vit D with K2 due to my hashimoto’s and I’m gluten free and seldom eat carbs because I was diabetic, which I’ve now reversed.

I will certainly try the saline nasal spray, I can relate to the post nasal drip, which drives me insane! What’s the essential oil you refer to, if you don’t mind me asking? 💐

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I'm happy to share anything that might help someone (and forget who I've written to). Congrats on reversing your diabetes. I hadn't thought about it but wonder if it might also be interrelated.

I get a "Sinus Formula" from Veriditas as it is sold in my local coop (MN Company). I'm told that Young Living has a good sinus blend but it is more expensive and the companies are comparable in their commitment to purity, etc.

I've also started using a salt inhaler twice a day. I got it online. You are inhaling air that has been around Himalayan salt. It has greatly reduced that middle of the night tickle and drainage. I'm still researching why but it has worked for a few people I know as well.

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I completely agree that they’re all connected! I was low carb for over two years and struggling to get my blood sugars back in the normal range after three months of being on levothyroxine for my thyroid they jumped back into the normal range! I don’t think I reversed my diabetes I don’t think I was truly diabetic. I had a really low heart rate and low blood pressure. I was under a cardiologist who couldn’t figure out the cause. Again both returned to normal range as soon as I began treatment for my thyroid. T3 does a lot of jobs throughout the body and when we’re low it causes all manner of problems.

Thanks again for the advice.

Kindest regards x

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And many doctors won't prescribe thyroid medication if you're only a bit low. It's the typical Western medicine where if you fit in the box of near normal, there's nothing to be done. My Naturopath thinks nobody should be low at all and prescribed Liothyronine for me. It greatly improved my life.

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So sorry to hear you are having these problems. Something has definitely got a hold of your health and is stomping on it. I only have the regular Sjogren's symptoms along with eczema which is now thought to be a related condition to Celiac disease. Tooth decay is very devastating when you've taken good care of your teeth.

I might suggest you try to gently detoxify. I've found that many symptoms are related to what I eat as well as to stress levels. Anyway this can't hurt. To start you can cut out as much sugar as possible, alcohol, gluten and dairy. These all feed inflammation, I think. And lowering your inflammation is a good thing in general. I cut back to eating plain meats (no sausage), rice and a few low-acid veggies (not tomatoes or peppers). Hopefully you'll start feeling better. Everyone I know who has done this did and had less fatigue, too. Then after a few weeks, add back one new food at a time every week or two. Pay attention to your mouth and lips as well as your energy levels. I think you will be able to relate your condition to what you eat.

I also think symptoms of many of these related auto-immune disorders are a summation of the stressors we experience from work, relationships, environment, food, etc. Some of us have a lower tolerance to these effects on our bodies and we over-react with inflammation. I have to be nicer to my body than my husband does. But If I'm generally feeling good, I can cheat a bit and have a taco or gluten-free cookie without bad consequences. If my symptoms flare I know I have to cut back on sugar and other things that my body recognizes as stressors. There is a book called The Autoimmune Fix that I'm reading now.

I've also tried a lot of inexpensive, natural remedies just to feel better . I take a homeopathic remedy called Natrum phos that has greatly reduced my mouth sores. It’s available at 1-800homeopathy.com. I also saw a dry-eye specialist. I recommend finding one. Something they suggested was taking fish oil which made a big improvement in my dry eyes. (My dryness is worse on one side, too.) I've also seen a Naturopath who suggested increasing my Vitamin D intake to get up to a normal or above normal level. That and Testosterone cream he prescribed has reduced my drowsiness. And finally I found an essential oil for sinus congestion that helps my sinuses to drain so I can avoid sinus drugs and use only saline nose spray which is cheaper. Recently I've started using a HImalayn salt inhaler which has also improved my sleep because I wake less due to post-nasal drip. Hope something helps.

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wow thank you so much for so many suggestions. I definitely notice that when I eat healthy my symptoms ease a bit so an illumination diet could really help!

Your reply really means a lot to me, im glad you've found some inexpensive remedies as it's all costing me a fortune at the minute! Thanks again for your advice, definitely going to write all this stuff down!

best wishes :)

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You poor darling. You've been through the wringer!

As you would know, Epstein Barr Virus/Glandular Fever can have fairly long term implications in itself. Quite debilitating fatigue and body/joint aches being a couple of them. Your recovery from EBV is still early days (less than one year) so some of what you are experiencing will most likely be due to EBV.

My personal belief is that there are triggers which set off autoimmune disease, with infections being one of those triggers. Has your EBV been such a trigger in your case, remains to be seen.

Although there are some common symptoms experienced by people with Sjögren's Syndrome, there are many diverse symptoms whereby everyone has a slightly different list of issues.

Your mouth and oral symptoms certainly need to be thoroughly explored. I would also venture that depending on the outcome of your oral investigations that you would be wise to have your eyes checked for dryness. The best specialists for this would be a regular Optician or an Ophthalmologist.

If your symptoms continue, an Immunologist may also cast some light on things. If Sjögren's Syndrome is suspected then a Rheumatologist will be the specialist of choice.

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Thank you for your reply! Yes it's because it's early days that I feel like I really don't know what's going on with my body. Maybe it is just EBV outstaying it's welcome! I'm going to go and see my dentist and see what she thinks about my oral symptoms, wait for my ENT referral and go from there I guess :) thanks again !

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My ENT appointment came through today, it's 7 weeks away but I'm glad I have a date to work towards :)

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I would say that EBV and other severe viruses can be the trigger more than the cause of autoimmune diseases, including Sjögren’s. The thing is that Sjögren’s is often a multi system autoimmune disease so it can present itself in many different ways.

Broadly there are two different forms - seropositive and seronegative. The seropositive type is the one affecting 70% of those diagnosed so is the one your GP could check for first - by looking at your main antibody panel, Anti Nuclear Antibodies (ANA) and Rheumatoid Factor (RF). If either or both of these are positive then your GP could either check your more specific antibody panel, ENA, for specific antibodies or else refer you to a rheumatologist.

Your GP should also run inflammatory markers ESR/ PV and CRP and check your vitamin D and B12 levels. You should ask for copies of these results for your own baseline and to get to know more about them.

If these are negative or not conclusive enough for a diagnosis you could request a lip biopsy but this is usually last resort as it’s a bit invasive and can damage the nerve in your lip sometimes.

If you are lip biopsy positive but don’t have the specific ENA markers then you have seronegative Sjögren’s. If your SSA abs SSB (Ro & La) antibodies are positive then you have seropositive. Both are equally serious and can vary equally from mild and manageable to severe and life changing.

It’s also a good idea to see an optician to get your eyes checked for the 3 types of dry eye disease that are often a hallmark required for Sjögren’s diagnosis. The Schirmers test still used by many rheumatologists is useless and there are many reasons why people may have dry eyes and mouth other than Sjögren’s so an ENT, dentist or optician can’t diagnose it.

Only a rheumatologist can diagnose Sjögren’s - and even then they often fail to identify it in seronegative form. It is a systemic disease affecting all parts of the body so usually it will go on to affect your digestive system and sometime cause parotid swelling, nervous system problems an joint pain - similarly to RA.

You may well have it in the early stages - mainly attacking your mouth. My mouth was similarly attacked when I was a child but is not too bad now as long as I can breathe through my nose - which is something I’ve taught myself to do despite frequent nasal congestion and a deviated septum. It really helps preserve our gums and teeth!

Best of luck with this and please let us know how you get on. X

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Wow thank you so much for taking the time to post your reply, that information is very very helpful! I will certainly let you know how I get on, and thank you again for your help as I am kinda clueless lol!

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