Hi everyone, I'm new to this board, I don't have a sjogren's diagnosis but i am becoming increasingly convinced I have it. I'm not new to autoimmune connective tissue disease as I have ankylosing spondylitis, but the thought of trying to get another diagnosis and then face up to another life long condition is making me rather fed up :P
These are the symptoms in addition to my AS symptoms that lead me to think i may have sjogren's - do they sounds familiar?
- My right eye has become increasingly sore/dry/itchy bit painful over the years. I now have to put drops in it in the morning as it takes me ages to be able to open the eye comfortably, i've also had 3 bouts of what we thought is conjunctivitis in the last 2 months and my eye is very veiny if thats a word! My left eye isn't nearly as affected. My eyelids and in particular my lower right lid is alway read and flaky and often looks swollen and my lids really itch all the time.
I always wake in the night with a dry cough which is worse when i lay on my back.
I feel the need to drink water all the time as I think I'm thirsty but it never quenches my mouth and throat, sometimes my tongue feel massive in the back of my mouth making me gag a bit.
My tongue feels like it has been scalded. This has come on in recent months and its all the time, my tongue looks normal but it certainly doesn't feel it! I've also noticed that it seems to affect my speech a bit, almost as if i slur slightly, not sure its audible to anyone else but I notice it.
The glands under my ears/next to my jaw often hurt and radiate down my neck or into my cheeks. It makes me feel like there's pressure in my ears (had the all clear by two ENT consultants) that I can never clear and my Eustachian tubes itch a lot. The glands seem to hurt more if i don't drink water and after I've eaten. If I blow my cheeks out I get a crackling sound and what feel like something inflating around my left gland under the ear/next to my jaw that sends a fluttering sensation over my top gums, really weird.
Head fog, and knackered knackered knackered!
That's the gist of it, any feedback would be appreciated!
Thanks,
Sarah
Hi SarahD,
Allow me to Welcome you to Sjogren's World! ;)
We're glad you found us, but not that you're having these problems, of course. I think you'll find lots of good information here and very helpful, friendly people. Please have a look around; you can put topics into the "search" and bring up lots of past posts.
In regard to your symptoms, they certainly sound familiar. I know none of us want to think about another chronic disease, and yet we need to know what's going on and how we can best be treated for all the issues. No one here can diagnose you, of course, but we can give some possible guidance.
Have you brought up your concerns with your doctor? If you've had conjunctivitis, have you been seen by an eye specialist or opthamologist? They can test your eyes to see how dry they are; it's important to have them checked out. Did the ENTs you saw have any ideas about why you have painful glands?
I'm just full of questions, aren't I? :-[ I'm just trying to get an idea of who's seen you and what the outcome has been. That's my feedback. I hope I didn't overwhelm you with questions.
Please keep posting. We care and we're here to help.
Melinda
Hi Sarah :)
Welcome to Sjogren's world. All too often autoimmune conditions travel in 'packs'. I would definitely ask your doctor to do the bloodtests that are assosciated with Sjogren's. So saying - there are quite a few of us here who are 'sero-negative.' We've been dxd with symptoms but bloodtests are negative.
I hope you find the site useful.
Take care - Scottie :)
Welcome SarahD to the forum. You will find a lot of information here.
I am sorry to have to tell you this but from your opening text it sounds like your to could have Sjogren's.
Hello and welcome to the brotherhood/sisterhood of sjoggies! I agree with Joe, sounds like Sjogren's to me. And I also agree with Meld that the sooner you get treatment the quicker you'll feel better.
One of the many things I love about this site (besides everything else!) is the search engine in the top right corner. Just plug in a key word and voila! So much information about whatever you were worried/anxious/concerned about. And everyone is so supportive. You'll love it here!
So post away!
Hello again and thank you for your quick responses.
Melinda - the ENT didn't really comment on my glands, was more interested in looking in my ears and up my nose, both of which came back normal. I even had a second opinion and went to see a private consultant who did an MRI but all the *normal* ENT things came back clear and he said there was nothing more an ENT person could do. I also saw a maxillo facial consultant to see if the ear/jaw/gland pain and some of the other headachey type symptoms could be TMJ but he said my TMJ wasn't severe enough to cause all of the other problems I have.
As I have AS as soon as I had any eye problems that I actually went to the GP about I was referred to the opthamologist at the hospital to check for iritis which it wasn't and it was just put down to conjunctivitis. The dryness wasn't mentioned and to be honest I didn't specifically discuss it as I was so relieved it wasn't iritis i didn't think about it until after i left.
I know I need to go back to my rheumy and mention all of the symptoms that have been ruled out as being caused by something else and raise sjogrens with her, but I do find the whole thing so stressful. My bloods have always come back normal when i have them for my AS, even when I've been unable to walk with such a bad flare so i fear i will be fobbed off. I just feel so tired and rough at the moment that I've lost the fight a bit, and i have a very active 18 month to add to my weariness!
I will certainly have a look around the board and get my arse in gear to being my next rheumy appointment forward - do you all see rheumy's? I guess it would come under that umbrella of conditions?
Thanks again,
Sarah
Sarah, your journey sounds alot like mine. I also had ear pain along with weird buzzy noises for which my first G.P. sent me to an ENT who ordered an MRI (I really did have my head examined, in other words! :D) They never found any reason for the pain, although they did scare the heck out of me by telling me it could be a tumor.
Many miles and many doctors later, I was sent to a rheumy (at my own request) who dx'd Sjogren's (just as I'd suspected) and placed me on Plaquenil. Now I only get the earaches / jawaches / faceaches / tongueaches when I'm having a "flare" which happens about once a month. I know one is coming when I wake up feeling like I'm carsick with a hangover.
My own conclusion has been that it's some kind of referred pain from inflamation in the parotid glands.
What kinds of meds are you taking for your ankylosing spondylitis?
Hi SarahD,
Let me also welcome you to the SJS World and family! I hope that you find the board as information and wonderful as I have.
I'm glad that you've found us and I hope that you get an answer soon (I know how maddening it is trying to get an answer).
Like the others mentioned, can you see an opthamologist soon about your dry eyes (that was one of my first symptoms, eyes so dry that I could not see normally out of them even with prescription glasses on).
Hang in there -
Patze
Sarah,
Thanks for all your info. As A66ey pointed out, sometimes we have some of this and some of that; we go to this specialist and they are only looking at ____ (pick a body part) ;) but not any of the other things. Sjogren's can be hard to pinpoint, partly because we have so many things happening and no one doctor puts all the puzzle pieces together.
Many of us have swollen and sore glands near the face or jaw, that can come and go. Our parotid glands are in the corner of the jawbone, in front and below the ear.
I understand you being happy about no iritis, so not asking anything more. I'm sure I'd be glad to be on my way.
As mentioned, we can have negative blood work and still have Sjogren's. Mine is clean as can be. Doesn't show a thing, and yet I have the laundry list of symptoms. I was diagnosed on symptoms alone.
I know going through the whole bit with a doctor is stressful. And yes, a rheumatologist is usually who's the specialist with these kinds of things.
I'm sure you have a lot on your plate with an 18-month-old. And we know how being so tired can just wear you down!
Just my personal opinion here, since it sounds like your eyes may be very dry/prone to infection, perhaps the first step to take would be to have a thorough eye exam and tell them what you suspect. Maybe that would be a less stressful start. ;) And you want to take good care of those peepers.
Keep us posted. Again, we're glad you found us and hope we can be of help.
Take care,
Melinda
I take enbrel for my AS, its an anti-TNF treatment, not sure if any of you peeps have heard of it or are on for other problems, its mainly used for rheumatoid, AS often piggy bags on rheumatoid treatments. Its worked brilliantly for my AS, literally got me walking again and reduced my pain right down, but all these weird *head* issues it hasn't touched. The reason my rheumy dismissed my initial jaw/ear etc problems as part of my AS or any inflammatory problem is because the enbrel hasn't helped it when its helped my other symptoms, hence being referred to the maxillo facial dept and then onto ENT. It took a long time to find a treatment that i could tolerate as i find the side effects of many of the drugs unbearable so i don't relish that possibility. I see plaquenil mentioned, what type of drug is that?
My next step is my eye exam next friday and in the meantime i need to get my regular bloods done, and then it will be back to the rheumy, my next appointment is in October so i may try and bring it forward. In the meantime i'll be arming myself with information from all of you!
Plaquenil is a disease modifying anti-rheumatic drug which reduces inflamation in folks with autoimmune -- and a miracle! My rheumy told me it was initially used as an anti-malaria drug during the building of the Panama Canal, so it's been around for a while. There are so many other people here who are much more well-informed about it than I am, hopefully someone will chime in with more good info than I can give you. You could also read about it on Wiki or plug it into the search engine in this forum for a whole bunch of great info. (Spoiler Alert! My rheumy told me not to read about it on the internet before I gave it a chance to work for me.)
In my case, it took easily four months for the medicine to really kick in and start making a difference in my illness. After six or seven months I was doing 75% better, and now, a year and a half later, I can sometimes even forget that I've got Sjogren's! I can tell a difference if I forget to take it for two days (which is what happens to me when I forget that I've got Sjogren's).
I hope this helps!