where next?

Hello Alice

As a first responder to your message I would just say that you should be seeing a rheumatologist to be tested/assessed for autoimmune diseases and you should do this as soon as possible.  Your symptoms of dryness are extensive and would suggest Sjogren's but this is not something an ENT usually diagnoses.  Have hope - a competent rheumatologist should be able to give you something to reduce the severity of your symptoms and yes, symptoms of an autoimmune disease can come on suddenly at first.

Your misery is quite understandable and I feel for you.  Let us know how you get on.

Presumably you have come here because you wonder if Sjögren’s might be causing your burning mouth syndrome? 

All I I can say is that I reached a similar point of desperation about similar symptoms - only in my case the burning has already affected my arms and legs for a few years and I had already been diagnosed and treated for Rheumatoid Arthritis - which then seemed to remit and the burning took over. One day I went to see my new dentist and begged him to remove my amalgam fillings and root canals in the hope that this might help eliminate my painful parasthesia. He referred me to the nearby dental hospital - and by then a new rheumatologist had discovered a very positive ANA and other immunology in my blood. I’d already had a lumbar puncture which showed that a systemic process was occurring. So I agreed to have aclip biopsy and this showed 100% positive for Sjögren’s. My sister also has burning mouth syndrome but hers is still classed as idiopathic and unlike me, she hasn’t suffered other rheumatic symptoms and nor have her arms and legs been similarly affected. My hunch is that she may well also have Sjögren’s but hers is less body wide than mine. 

Oh how awful for you Alice. It is a horrible time being in no-mans-land in terms of a diagnosis.

I would say that while you are waiting for some satisfactory answers you may find a measure of relief by using some lubricants for your nose and mouth.

For your nose some people find relief using vaseline (I personally don't), paw paw ointment or a nose oil obtainable from your pharmacy. With the ointment put some on your finger and carefully spread it inside the lining of the nose. Do this as often as you need but particularly at night before sleep. My ENT prescribed his own special nose ointment for me many years ago and I still use it. It includes Adeps Lanae (Lanolin), MCT oil (33%) and Propylene Glycol (3.3%)  It is a lovely soft and soothing ointment.

For my dry mouth my doctor suggested a sugarless chewing gum. I have found a 'lemon and lime' one to be best as peppermint tends to have a drying effect. Lemon and lime really stimulates the production of saliva. Don't chew it for too long as the best effects come in the first ten minutes of chewing.

Also for the mouth, I have heard people swear by a lozenge which you put in your mouth before sleep or during the day. It adheres to your gum and is an oral lubricant. Look it up online for more info.

I do hope others give you some ideas as well.

Hi Alice,

Let me start by saying I understand your frustration with "dry mouth ". Some mornings I wake with my mouth so dry that my tongue is literally stuck to the roof of my mouth. And yes I have also experienced my tongue being very sore and sensitive. I have been diagnosed with Sjogrens. I have to use Biotene dry mouth oral rinse daily for temporary comfort. I would suggest you go see a Rheumatologist.  Take care 

Like many on this forum have mentioned, the best thing is to seek the advice of a Rheumotologist. There are many autoimmune disorders associated with dryness but certain medication can also cause dryness. I had dryness and saw a Rheumotologist as well as a Gastrologist. I tested negative for SS but was diagnosed with RA which according to my Rheumy can also cause dryness. I have nasal dryness as well. I think its from the inflammation. I use saline gel and saline mist with no preservative plus a humiterfier. I try to eat healthier abd use spices such as ginger and tumeric which are fantastic for the production of saliva and help with inflammation. Read up on benefits if you are able. Also the Rheumotologist prescribed pilocarpine which i only use if i am extremely dry. I try to avoid meds as much as possible because most have side affects but everyone is different and its not my place to tell you how to look after your health. I have found that being treated for acid reflux has helped me immensely with my throat dryness. I can only take Ranitidine in syrup form. I have started to produce saliva on my own treating my acid reflux. Keep calm, meditate and choose your foods, med and activities. Keep a log of your symptoms and what triggers rhem. They do come unexpectedly. Wishing you all the best. God bless and let us know. Everyone is great on this forum and symptoms are very similar.

So sorry to hear about this Alice, but not at all surprised. I'm afraid most of us get told it's nothing for the first few years. It took me 10 years to get a diagnosis, and I gather that's not unusual.

Dry mouth was my first Sjogren's symptom, 23 years ago. As far as I recall, it did seem to come on quite suddenly. My GP said it was an allergy, which I knew was nonsense. I've always had mouth allergies - mainly to pears, yellow apples and hazelnuts - and knew the symptoms were entirely different. I was in the process of changing doctors anyway at that time, and when I asked the next one about it she said it was old age. (I was 51 at the time.) I also saw two different dentists, neither of whom had any idea what it was.

It's clear from your use of English that you're in the US, so I'm hoping some of the American posters on here will chip in and make a few suggestions as to where to go next.

The only crumb of comfort I can offer is that this may not go on for ever. Some of us find our SS symptoms come and go, affecting different parts of our body in turn, while others get stuck with the same symptoms all the time. In my case, the extreme dry mouth only lasted 6-12 months. After that it eased off a bit and I started getting tingling and numbness in my feet. Then it progressed to dry eyes, and so on and so forth. These days, I only have a very dry mouth in the night. Most nights I wake once or twice completely unable to swallow and with my tongue stuck to the roof of my mouth, but it doesn't trouble me too much during the day.

Don't despair, I'm sure someone will come up with some helpful advice on services available in the US.

I can only add my voice to the advice you've been given here already. Just ask for that referral . Be specific. Research a specialist in your area who deals with Sjogren's and directly ask for a referral. If it is refused ask for a written explanation of the refusal. If in the UK the nhs patient's charter gives you the right to ask for a referral to a specialist of your choice. Speak to the Sjogren's Society here and ask about good doctors and an information pack. Good luck.

My eyes were so dry that they used to stick to my eyelids so I couldn't open them in the morning without first squeezing in drops. I had sores in my nose and my tongue and cheeks were stuck to the inside of my face. All that was before I started taking 3 coconut oil capsules and 3 hemp seed oil capsules daily. One oil on it's own didn't work but the combination of the two, one of each taken with each meal has worked wonders. I also use biotene gel in the morning and biotene mouthwash after meals and the really bad dryness has subsided thank goodness. I hope this helps you. It cannot harm you to try.