It's been a long time but hello! Flare up - Sjorgen's?

Well, I was on this forum a while back. Took a break because I had no diagnosis of Lupus and put it all down to my 'state of mind' again...

But I am back and well, having had a visit to the dentist for an ongoing problem/s - there was a suggestion of Sjorgen's.... and she is now writing away to my doctor for futher testing. Funny how the dentist appeared to take my symptoms seriously....

So here in brief are my symptoms.. and if there is anyone out there who can let me know if it sounds similar or has any thoughts.. great! Thank you.

I am presently suffering from severe possible sinusits/middle ear infection - weirdly no discharge and pretty dry nose, on second antibiotic, sprays, inhalers, steams to combat, really awful pressure and pain behind eye, nose area, ear area BUT weirdly again - pain in my jaw and temples and above ear area really bad and hurts when I eat and talk! Hence the dentist visit...

I have had a similar episode years ago and lasted months :(

I also get a dry mouth, drink gallons of water, particularly at night. Im also thinking I get dry ears now, because previously I was told I might be getting excema in my ears (but I dont think I suffer from excema) - itchy ear syndrome anyway..

Im just interested if the dry nose might be causing sinus or ear issues?

Other things going on.. increased stiffness particularly in the morning, investigations for allergy - wheezing and peristant cough - often dry, had loads of issues with back spasms and my perhipheral hyperexcitability - the twitching, vertigo/migraines, oh and presently a pile of nice ulcers in my mouth.

Anyway, fed up to say the least - they say a diagnosis takes years.. it certainly does.

15 Replies

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  • Oh and I sweat at night.. :( GP just ignores this.. brain fog pretty much all the time it's a running joke in the family.

  • Hi Trueman, I have sle & Sjogrens. You pretty much described symptoms I suffer with the Sjogrens. Sometimes with the pressure behind my left eye I feel like its going to pop out of the socket! Also am suffering with painful sinuses at mo, to point I have to take strong pain killers & lay down. Nothing really works & I have to wait for it to pass. Oh I use nasel spray as last resort. Don't like using them really because they can give me nose bleeds. I too have itchy ears but didn't no there was a name for it. I have dry mouth & drink loads. I find if I add a bit if flavoured juice to water its more thirst quenching. I'm very stiff in the mornings & have got into a routine in the mornings now to help me move. I'll give myself longer for my body to start moving. I shuffel to the kitchen & make myself large coffee/tea & take it bk to bed, where I'll stretch my joints as I enjoy my drink & go through emails etc. But you do need to be referred. A lot of what we have we just have to learn to live with it & find ways to cope, but you need a name to what your suffering from. Will be some meds out there to help you & you need support from docs at hos. Wishing you well, xxx

  • Oh & I get painless/visual disturbance migraines. Have woke with total blindness in left eye couple of times. But only lasts seconds. Am currently been investigated to confirm migraine. Left ear been prob for years with constant infection, now got deafness in said ear, due to nerve damage. Don't wish to scare you as I'm 61 yrs now & I wasn't diagnosed till couple of yrs ago, I was always ill with something or other so the sooner you seek help the better for your out come. I too have constant dry cough, another symtom of Sjogrens. Hope I've been some help :-)

  • I have SLE and Sjogrens and experience similar symptoms to yours. I hope you get tested!

    I've been on Plaquenil (hydroxychloroquine) for a year and it has helped with joint pain and inflammation.

    Lately though, my eyes have been most bothersome - very dry and irritated. I use drops daily and a gel at night. My eyes cause me headaches. I'm seeing my rheumy in a week or so and I need to talk with her about my eyes and what can be done as they seem to be getting worse. I'm also seeing my ophthalmologist in mid August and will ask him if the Plaquenil is affecting my eyes OR if it is just a progression of Sjogrens.

    My dentist is aware of my Sjogrens and she recommended I use biotene mouthwash and mouth gel. They are a big help in keeping my mouth moist so I avoid getting sores.

    Good luck!

  • Hi Smudge and Milkwoman. Thanks ever so much for the replies. Taken me a little while to get back on to the site to respond but I appreciate it.

    Its the sinus thing that is really bothering me. I don't understand that my nose feels all dry (blocked trying to breathe up them separately) but Im told it is sinusitis. I thought you were supposed to have loads of mucus! This is my second episode of severe sinusitis/ear inflammation and now terrible jaw/temple pain. The headache/pressure around the head is unbearable sometimes. Do you mind me asking how long your episodes of sinus issues might last? And if you think the dry nose/mouth etc contributes to it? My mouth feels like sandpaper its so dry no matter what I do. Im just interested if the dryness causes the problems? Im getting a mouth guard made by the dentist to stop my clenching at night etc. The whole jaw aches and feels really stiff.

    Also do you mind me asking what pain killers you use? Paracetomal doing nothing. I have tried ibroprofen today as well but they usually cause me to be nauseas and not really supposed to take them (tummy issues) but I really dont care now.. just want some relief..

    Im going to chat to GP hopefully asap this coming week. Im actually just going to walk in and ask for the test for Sjorgen's. I believe it is simply certain bloods that they look at? Or can a GP do this? Do I need referred. I really have had enough today :(

  • Oh and milkwoman, that's weird. Cause I have woken up about four or five times in the night completely blind in one eye - but only for about a minute then it comes too again. Is this something important? Related? Worth mentioning to GP too?

    Thanks!

  • Good morning Trueman, my sinus pain comes & goes. Can last for days or just 1 day, no pattern to what causes it. My nose also dry, no mucus. If I bend my head over my nose can drip a clear fluid. But the pain is unbearable. And I feel nauseous also. I take Codeine for pain, but I find that helps me to sleep more than helps the pain. As last resort I'll take nasel congestion tablets, usually the one aday tablets. They do help, sometimes just 1 tablet is enough to get me mobile again. Have you had scan to see if you've a pollup in your nasel passages? I've had surgery yrs ago to remove one & have had no trouble with sinus pain till just of late. They do grow bk, but I was pain free for yrs. I try to keep if nasel sprays because they can thin the nose.

    I get painless migraine. New symptoms have arose & been tested just to make sure its not low blood pressure during the night. You do need the blind episodes checking out to confirm its possible visual migraine though. There very frighting episodes. Eyes are very precious things. I'm not medically trained & your symtoms cld be something else. Just sound very similar to mine. Hope you find something to help ease the sinus pain xx Patricia

  • I got a Ro positive test for my Sjogrens when I was diganoised with sle.

  • Thank you Smudge! Ive been prescribed a steriod nasal spray as well as second antibiotics. But from reading on here I am seeing that they aren't the best thing for dry noses? At the moment, the GP is suggesting allergies as a reason. I don't think the spray is helping much at all now. Initially it seemed to give a little relief a few weeks ago.

    I going to take some co-codamol later after the paracetomal has worn off. The ibroprofuen has done nothing either :( Steaming is the only thing briefly the lifts the pain a tiny bit.

    I have had a sinus scan years ago when I had a very similar issue - combined with loads of other issues. I have a narrow tube somewhere apparently. Do polyps grow over many years? I imagine they do so maybe clear in that respect? My twitching has gone bananas with all this nerve pain..

    The eyes thing is recent - last 3-4 months. I will mention it then.

    Im off to the GP this week. Can't bear it anymore.

  • I found with the nasel spray the more I used it the more my nose felt blocked/dry etc & I'd have to use it again. That's why I now use the congestion tablets, I get more of a long lasting result. It is an unbearable pain & hope you get some relief soon. Do you sneeze alot? Cld be that it is hay fever? That's nasty also. Good luck at gp's. Just thought that mayb your narrow tube in nose has got worse? Mayb suggest another scan, you most probs thought of that. Please let us know how you get on, Patricia xx

  • Thank you again Smudge. I need some relief now. 3 weeks in and sometimes no let up at all. I will chat again with GP about the nasal spray. Trouble is any referral will be months away and I can't cope for months with this pain. I will update you. I can't go through another week like this so something has to change! Not Hayfever. I believe I have a dust mite allergy - tested a while ago for those two. Im getting a cat allergy test because we have one - just incase. And an asthma test for this long term cough. Totally appreciate the support..

  • Just been to the GP. I failed to ask for test for sjorgen. But he listened to everything and pain levels have heightened. He also listened to the dentists concerns. and said he doesn't think it's sinusitis since I don't fit classic symptoms. Seemed more concerned about severity of temple pain. Eye pain. Taking bloods - no idea what - tomorrow. Back to see him end of week. Thinks something else going on. Prescribed co codamol and diclofenac. Tentatively taken co codamol and not done anything to take pain away :( I will mention Sjorgens on Friday when get results. Funnily enough dentist rang as soon as got back - checking up on me. Said she would call my doctor and emergency refer me to maxifilliary whatever it is deptartment. She has been great.

    So much pain...

  • Good morning Trueman, great something is been done for you at last. I do wonder if your gp has spoken to the dentist to compare notes? The maxiffiol deals with all to do with head, neck, throat, oral probs. Let's hope your sorted soon. Fingers crossed for you xxx

  • Morning smudge. Hope you are having a bright morning! Yes, I'm a little hopeful that I might get somewhere this time albeit most probably over a period of months and months.. I'm certainly feeling more determined to push harder as I remember how much the last flare up affected me. And inbetwen those flare ups for past couple of years I've still clearly not been right.

    Oh well. Onwards and upwards. Pain levels about a 6 this morning so manageable for now..

  • You certainly sound more determined today Trueman. Keep it up! It's a shame we have to push for help & diagnose of new symptoms. It's hard enough for us in the 1st place. I've got joint pain today, gonner shuffle into a nice warm shower & get myself moving. Hope you have a better day :-) xx

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