Not sure if SS ... any advice appreciated
Posted , 4 users are following.
Hi. I've not been diagnosed with SS or anything else yet. My appointment with max fax clinic has finally come through for next month. My Dr just suspects I have it. So ....
It all started last August 2016 with my optician saying I had blepharitis in my eyes. My facial redness got so much worse too. Then in March 2017 I started with an extremely dry mouth. My doctor sent me for every test going ... all came back negative hence the referral by my dentist and doctor to the max fax clinic.
The reason for the posting is that last week I had a sore throat and a few days later I started with nausea fatigue and dizziness. I am still off work with the same symptoms. My facial redness and dry mouth symptoms have all got so much worse too. I just thought it was a virus but after going the Dr's after 6 days of feeling like this they suggested it may be because of SS. Obviously it may be a virus but it's never effected me like this before (I've not had a day of sick for 3yrs!)
I'm struggling to get out of bed. The dr has made me think wether it all could be related so thought I'd finally join this group to see what others thought. I'm not after a diagnosis just to see if others have had the same thing. Many thanks in advance (from a woman nearly 40 who can't get out of bed!)
1 like, 6 replies
stokeblue
Posted
lily65668 stokeblue
Posted
Good heavens! All I can say is that you're very lucky to have a doctor who started thinking about SS as a diagnosis only a few months down the line. That one's a keeper! Most of us have to wait years (10 in my case, and I know that's not a record) with a succession of dentists and doctors, including some specialists, telling us it's old age, our imagination, all sorts...
I hope you'll soon get a diagnosis, and also that you'll soon be feeling better. However, the sore throat may not be associated with SS. I don't know where you are but there's currently a very nasty respiratory virus going round in northern Europe (including the UK) and I suppose it might have made it to other continents too.
Having not had the slightest cold for 14 years, I went down with the virus 13 days ago. I was so ill I couldn't get out of bed for two days. Apart from the sore throat I had blinding headaches and muscular pains all over. It's improved slightly since then but I still don't feel too good, every couple of days the sore throat returns with a vengeance and I now have an irritating dry cough. In my case, I'm putting this down to a viral infection, not SS. That being said, SS does make any respiratory infection worse of course, as our nasal and bronchial secretions tend to be extra dry and sticky.
I'm not saying all your symptoms are down to a flu bug, just that it might be muddying the waters at the moment.
Many of us on here will sympathise with the negative blood test thing. That's not unusual in SS. In me the disease goes through a constant series of flare-ups and remissions - the latter sometimes lasting a year or so. My blood inflammation markers are all over the place, and rarely correspond with my physical state. They can be only slightly raised when I'm going through a bad flare-up and sky high when I'm feeling fine! I'm afraid Sjogren's syndrome is an elusive beast to pin down.
stokeblue lily65668
Posted
Thanks lily. My doctor thought it was ss after my third visit with the dry mouth and eyes. After ruling out diabetes (because I was drinking soooooo much) and a neuro thing he sent me for ana?? tests. I has 4wks of bloods but all came back negative. I was glad but I just want to know what's causing my dry mouth!!!! It's driving me insane!!!!!!
Thanks for your adviceand info. I think dr was thinking that my immune system is reacting strangely to the virus. Not site of its ss. Didn't even cross my mind. I'm in England. I haven't got the sore throat anymore just the fatigue nausea and headaches. I'm going to wait a week to see if it goes (fingers firmly crossed!)
Thanks for letting me know about your experience of ss. I believe in finding out as much info as poss.i understand my symptoms may have nothing to do with ss.
Thanks for the reply. 😊👍
aitarg35939 stokeblue
Posted
Regardless of the source of your dry mouth & eyes, you need to start treating the symptoms because that dryness is very destructive. I assume that the eye doctor got you started on eyedrops. Did the dentist talk to you about dry mouth toothpastes and mouthwashes? I hope it was explained that these products won't fix the symptoms but that when they are used properly they create a better post-brushing stasis than one gets from regular pastes & rinses, with all their harsh chemicals, unhealthy sweeteners, and drying/burning alcohols. The best ones are like the best gums: sweetened with xylitol. Look for it, it is your friend.
All that water sometimes just makes our mouths drier. It helps if you cool the water and if necessary add a small amount of juice or sports drink to the water. If using sports drinks make sure they lack oils, which cost membranes and prevent bioavailability of the fluid. I often get a mouthful of unsweetened applesauce, chilled, and hold it in my mouth a bit before swallowing it.
If the dentist didn't say, you should know that dry mouth causes cavities and him disease. So do what you can to take care of the symptoms ahead of your diagnosis.
stokeblue aitarg35939
Posted
Thank you.
I started eye drops for blepharitis last August. But I only have saliva spray for my dry mouth. I have read about cavities and the importance of looking after my teeth and mouth. Thank you for telling me about the toothpastes and gum - I didn't realise that. Will look into it today.
Many thanks for your advice 😊
aitarg35939 stokeblue
Posted
Ask your eye doc if you also need moisturizing eye drops.
I often have half a piece of gum tucked away in my mouth; I narrated Talking Books for years with gum in my mouth. It helps immensely ecen when not chewing it. A whole piece just wears out my jaws. Spry products use xylitol & their gym is much smaller than regular gum.