Hi - not new here but i'm back

[Daisy]

Hi all,

I visited this site about a year and a bit ago as I was afraid I had symptoms of Sjogrens.  Well, as we all have probably been through I went to my GP and they sent me for bloods and to see a rheumy.  The rheumy sent me to an oral guy and he also sent me to a dry eye specialist. My test for the eyes was normal and they said they didn't think it was Sjogrens.  My bloods came back clear (as most do) and the oral guy said because I have saliva he didn't think I had it.  He was quite an ignorant man and at the time I could not be bothered to argue with him.  So the rheumatologist said he thinks I was clear and to come back if there was any problems. 

Cut a long story short, I have been trying to manage the symptoms on and off since, my mouth goes on and off dry. Some days I have normal flowing saliva and other days it's bone dry.  Just recently the 'flare' has got much worse and I am waking up with a bone dry mouth in the mornings.  The past few days I have had such pain in my salivary glands and one side is swollen.  I am fortunate enough that I don't have much joint pain bar one finger. 

I am finding it so hard to concentrate on my work (i am a nursing student and am in the middle of my dissertation) because the pain is so bad. I had a Dr's appt booked for a week today but I have just called the GP surgery and a Dr is calling me back this afternoon and will assess whether they need to see me.

I think it is sjogrens - in fact I am almost certain and I am crying my eyes out because I am 32 and absolutely terrified of what my life is going to become.  The dry mouth is so debilitating :-(  I am on co-enzyme Q10 and I read the post about it stimulating salivary production.  I don't know what advice I am looking for but i just needed to vent and cry at people who understand.  I am in agony and I am terrified of living my life like this for the next however many years!

Please help!
Thank you

[araminta]

Hi, I am older that you but have been in a similar situation for a couple of years.    I had all the usual dryness symptoms plus terrible fatigue to begin with - this seems to have gradually improved recently, after two years.   I was diagnosed with dry eye and am using Hylo-Forte eye drops, which are helpful.   The rheumatologist didn't think I had Sjogrens because Schirmer tear test was within normal limits and my bloods were normal.   I have the dry mouth - sometimes not too bad, sometimes very bad at night like you.   Have you tried Xylimelts - they're expensive but good to have beside your bed in case you need one.   Some people here find Biotene gel helpful but I seemed to be allergic to it and it made my mouth swell up.   I also chew gum in the day.

As you will have probably read on this forum, lots of people have these symptoms for several years before they get a definite diagnosis.    (And of course it's possible you don't have Sjogrens).   I think the best thing you can do at present is not panic (most people who have Sjogrens don't get it in an extreme form and can manage it), and look at things you can do to improve symptoms.   There is lots of advice here about that.

I do understand how you feel, I felt awful when all this started, but there is still a lot you can do to reduce the discomfort, and there is always support here.

[Joe S.]

Welcome back to this forum Daisy. There can be a long full life after the diagnosis. Over time, we gain skills to manage our symptoms. You will find that you can regain parts of your life. Take happiness and joy where you find it.

When Pain comes knocking:
Don't Panic as panic increases anxiety and pain.
Remember to breath. Our natural response to pain is a splinting action which includes holding your breath. But we need that extra oxygen to relax our muscles and reduce our pain.
Meditation can be very helpful in managing pain but it takes practice without pain.

A simple meditation:
Get as comfortable as you and close your eyes.
With your eyes closed, look to the top of your forehead.
As you breathe in, think "I am" and as you breathe out, think "calm". Repeat for 15 minutes with slow rolling breaths.

[Daisy]

Hi Araminta & Joe,

Thank you for your replies..

Araminta - Sorry to hear you are going through the same thing.  It's horrible because in some ways you would rather have a diagnosis so you know what you are dealing with.  I have been going to the drs for a little over 3 years with weird and wonderful symptoms - a lot of neuro stuff and peripheral nerve stuff like numbness and pins and needles and also vertigo, which they have said is vestibular migraines.  Whilst I am not disputing it isn't migraines, I think some of it could be sjogrens.
I am glad to hear there are ways to manage it and I guess on this forum there are probably a lot of people who are sadly quite badly affected by the disease. I read somewhere that it is a very common disease so I expect a lot of people manage it in their own ways.  I also have fibromyalgia and that supposedly can cause a dry mouth but to this extent, I am not sure.
Do you mind if i ask you whether it has a huge impact on your life? i am anxious people can hear my mouth is dry when I speak.  I always carry chewing gum and mints in my pocket to help with it.

Joe - Thank you for the advice. It is definitely hard not to panic isn't it.  Especially when you don't know what you're dealing with.  I am hoping my GP refers me back to the rheumatologist as there's something going on.
Thank you for the meditation information, I will give it a go later.

Can sjogre's flare with stress? I guess any autoimmune disease can be flared by stress. I am currently under so much pressure with my dissertation (i am also on a nursing placement, unbelievably in an ENT unit that specialises in salivary glands!) so I think that that could be contributing to the flare, does anyone else's flare with stress?

Look forward to hearing from you all and your stories.  Thank you x

[Joe S.]

Stress is part of the pain cycle. It does ramp it up pain. That is why the first thing I say is Don't Panic. The next is remember to breath.

[cccourt1942]

Hi,
   My interest in SjS symptoms lays in managing them.  You are not positive for SjS.  Okay.  That's fine.  BUT..are you uncomfortable?  Are your oral manifestations making you uncomfortable?  Is the fear of oral dryness leading to something else stressing you out? The only one of those questions which you can control is a med for the oral dryness.  There are four of them.  A dentist can prescribe for you if a medical doctor won't.  Why?  Oral dryness can lead to excessive bacteria growth at night which can damage your teeth.  I know.  You can manage that discomfort.  You don't need a SjS dx for that med. 

     Hope you can destress at this time.  I know how those academic demands can make a sane person nuts!

     Good luck.  (also...Xylimelts...available at Amazon if you can't find locally)
ccc

[araminta]

Hi Daisy, You asked about the impact on my life.   To begin with the impact was significant, mainly because of the fatigue, and it's only in the past few weeks that this has lifted somewhat - it was worst during the first year.   It doesn't sound as if fatigue is particularly a problem for you, which is great.   The dry eyes caused me a lot of trouble as they got worse around 5 in the afternoon, so I never felt like going out in the evening because of the embarrassment of having red eyes.   However I managed (following a suggestion from this forum) to get rid of my blepharitis using tea tree oil, and I think the Hylo Forte plus warm compresses and lid cleaning have helped with this problem.   The dry mouth is manageable now, and I use saline nasal spray for the dry nose.   

I think you will feel a lot better if you start to address some of the dryness issues.   I suspect your worry about people noticing your dry mouth might be contributing to it, anxiety too can cause a dry mouth (this happens to my husband every time he has to speak in public, and he certainly doesn't have Sjogrens!).   Try to relax and enjoy your life as much as possible, try not to focus inordinately on your symptoms.   Frequent sips of water help, and I usually have some chewing gum in my mouth even when I'm not actually chewing it.

I hope you get help with the finger pain (which may have absolutely nothing to so with Sjogrens by the way).

[Daisy]

Thank you for your replies. I agree re the management of the symptoms, even if I don't have a positive diagnosis, it is still so bothersome.

I managed to get a GP appt this evening & im being referred to a different (by my request) oral expert. Hoping he can prescribe one of the meds to help me. I'm taking co-enzyme q10 too so hopefully that will start to help.

I remember the dry mouth being this bad right at the beginning and it improved over the last couple of years with the dryness only happening once every now and then. It feels just as bad this time as it did the first time & i never had pain with it before.

I am just terrified to have this for the rest of my life - I'm 32 

[Carolina]

Hi Daisy and welcome back.

I wish things were going better for you.

Ask one of your doctors to try Salagen or Evoxac for your oral dryness.  What do they have to lose?  If it works it works, if not you can stop.

Also try a humidifier at home if you have forced hot air heating.

Chewing gum helps for some people, by the way.  Tho' not often 'lady like"

No need to worry about the future of what you 'might have'.  Most people with Sjogren's deal with dry mouth/dry eyes and then carry on with their lives.

Here you will read some pretty horrible stories, since we are among the very few who do not have simple Immune Disorders.  But we are not the typical case.

And we only do 'the rest of our lives' one day at a time.

Breathe.   Be kind to yourself.  I'll be 75 on Thursday...........one day you'll be 75 and look back on a long, wonderful life.

Hugs, Elaine

[Sharon]

Sorry to hear about what you're going through Daisy.
I agree with Joe on the importance of avoiding panic.
Concerning the CoQ10, it's best to get Ubiquinol as it's the active component responsible for the saliva increase.
Hope you find relief soon!

[bluegardenia]

daisy if u want an answer about sjs  u can do a lip bopsy, its not terrible and u will be sure
araminta, im happy u found relief from hot pads and tea tree

[araminta]

Blue gardenia:   yes thanks to all your help!

[Daisy]

Thank you all for the replies.  I have read them all & have also been going through the forum reading others stories..

The first thing I do when I think there is something wrong is google and join forums.  I think as some have said, only the extreme cases come to forums and the rest just carry on with life.  I have read some stories on here and been really scared as to what this disease can do.  I am hoping that my appt with the oral person comes soon so that I can get answers...

Carolina - i wish you a happy birthday for tomorrow Thanks for the advice, I am hoping the specialist can give me something to help with the mouth.  Mine definitely goes up and down, some days I have zero saliva (or it feels that way, some days I have enough where I can actually swallow saliva) so I hope that's how much it affects me, but who knows.

Sharon - thank you for the advice! I had actually ordered CoQ10 a while back to help with my migraines but I will get some Ubiquinol ordered for after these finish.  Has it really helped you? I love hearing things that can help .

[MAT51]

Sorry that you are going through all this uncertainty. The thing is that I have had autoimmunity for most of my life but didn't find this out until I was about 47. I just thought it was me and my late mum always told me it was neurosis so I assumed she was right. Looking back this was her projecting because I'm not neurotic at all! So it's the knowing something is up that makes you different to your peers that often leads us to search online. And then it's all too easy to find a dread disease and make  the symptoms fit. I'm doing it myself just now with a condition/ slow burning cancer called Polycythaemia Vera. It's a good fit and my bloods support it but I've been under rheumatology, neurology and endocrinology for years now and I think/ hope that my doctors would have identified it by now if I had it.

The same cannot always be said of Sjögren's as many go undiagnosed (or in my case misdiagnosed with RA) for years. But really, unless it affects your entire connective tissue system as mine does, I think the main thing is to focus on getting the dryness in your mouth addressed effectively through topical treatments. If you get dry eyes and/or joint pain at a later stage then you will know about Sjögren's and can always ask to be referred back to a rheumatologist. I think that seeing an oral specialist is the right way to go for now. Good luck and try not to panic if possible. It makes me glad that I had no internet when I was your age - bad enough now at 54