Sjogrens World Forums

Hi,
I have been reading your posts for a week or so trying to see if anyone has found something to help with the swelling of the glands under my ears. The pain is really bad and my face was so swollen.  That is the first time I heard the word Sjogrens, that was 15 years ago.  I have had most of the same symptoms that everone has talked about here.  The worst is the painfull swelling of the glands.  Right now my tongue is so sore, it feels like I it is raw from the dryness.  The forgetfullness and fog is getting more difficult to work with.  My husband just looks at me so funny when I tell him I don't remember something.  It was reassuring to hear that most of you have all experienced these same symptoms

I want to thank everyone here on the forum for helping me feel like I am not alone. 

Helen

Hi Helen

Welcome aboard! I'm glad you decided to introduce yourself to us. Sorry ot hear about the tongue - it's horrible when it feels so sore, isn't it? Mine tends to flare up from time to time. I use Biotene Gel, Gelclair, and when it needs a bit of nurturing, nice ice cold yoghurt soothes it.

I'm sure lots of other people will be along soon to welcome you.

Hugs
Kathyx

Hi Helen  :)

Welcome to Sjogren's world.  :)

I've read in here that hot compresses and gentle massage can help with swollen glands. I'm in the fortuneate position of never having suffered them yet - so I can't vouch for the effectiveness but it's certainly been recommended before.

I guess you've been through all the tests?  have they also tested for Vitamin B12 and also thyroid function? A lack of B12 can also cause burning tongue and my brain fog was at its worst when my thyroid went underactive, although SjS can do that all by itself.

Take care - Scottie  :)

Hi Helen

Welcome and thanks for introducing yourself.  Have you been diagnosed for 15 years or is it more recent? 

I'm lucky enough not to get the painful swollen glands although others here do and I'm sure they'll be along soon with advice.  I remember reading that hot compresses applied to the glands (and then used to massage firmly and clear the glands) can really help.  I do have the puffy face that people have been discussing recently.  I thought it was mainly the steroids but I think that my cheeks have sort of thickened.  Do you have that?

I often get the raw tongue feeling, almost as if it is burned.  It's worth checking your thyroid and vit B12 as Scottie says, although it could just be another SjS 'gift'.

Brain 'fog' and forgetfulness affects us all and there have been lots of discussions here about how to cope with it.  Families and friends just don't seem to understand why we can remember something one day and then it's completely gone, even simple things like driving home the same route. 

Keep posting and letting us know how you are.

Take care - Chickpea

Welcome to the site,

The first sign of anything wrong with me was swollen glands... I used massage whilst soaking my cheeks in hot water in the bath to alleviate my symptoms there.  I have since gone on to have lots of other wonderful things including nervous system problems, and people all know my memory is terrible!!

I hope you find the forum as helpful as I have done!

Chickpea,

Yes I was diagnosed 15 years ago with sjs.  It all started with swollen gland and allergies, testing and more testing.  I have done alot of research on my own and belonged to the foundation but I never know about this site.  I am so grateful to find all of you.  We all have our own problems and suffer through them but we are not alone thanks to everyone here. 

I think I will very much at home here.

Thanks to all
Helen

Hi Helen,
Welcome to the family.  I'm so glad your journey has brought you to us. 


Where are you from?  Are you in the USA or over the pond?  I'm in Pennsylvania.

The warm compresses and massage are the best way to treat those swollen glands.  Other than that, there isn't much we can do for them. 

I haven't had them, but I did have the puffy face from Predisone for about 7 yrs. 

Take care and come often, someone is always here.  If you want to have some fun with other Sjoggie's, join in the chat sessions.  You will find the schedule from the Home page.

Hugs, Pooh

Hi Helen!

Welcome to Sjogrens World! I am very happy that you found us too! Its always great to know you are not alone and that you have people to talk to who really understand!

Take the time you want to read through the posts and if you have any questions...feel free to ask...or if you have the some information or answers to someone else's questions...feel free to jump on in...you have many years of experience with sjogrens...so your knowledge is very important!

Welcome to the family!

Hi Helen, One of my  dearest master gardener friends is named Helen and now I have another special friend in you, Helen. I, too, like you am a newbie to Sjogrens World and too will soon have been diagnosed with SS for 15 years though realize had it several years before finally traveling to JHopkins for help w/extensive impairment of my eyesight. Has been an 'up and down' ride on the road of life!!
:) Though when the times are good, I do a lot of 'shade tree farming' while watching the birds, bees, and beautiful butterflies flit to and fro... while wearing my sun glasses the whole time!!!!

Now to gland thing-ie: Have had issues w/my glands ever since I can remember.  The parotid gland in front of each of my ears(which are now scanned yearly) stay swollen all the time while on the right side there has been a gland under jaw line that will swell up and then when I take 200 mg  Guaifenesin (this is an expectorant that can be bought at US pharmacy OTC). It will empty as others have already mentioned to you to use warm compresses and massage upward toward the ear and it seems to empty somewhere. One of the things I do before turning off light for night is to wrap my head in a soft 'blankie' to keep head warm. If you have interest in my homeopathic way of handling gland in more detail, let me know. Fibro fog is 'dense' tonight w/me; have used the med dictionary at least six times. ??? Think some already inquired as to where you live and do you mind sharing with us? Joy in TN

Questions for the night???? What is the name of the 4 small pea-sized glands that are behind the thyroid gland? And, what one mineral do they control in the body???? Certainly was a surprise to me as I'm not a medical person and more surprised as what one of them did to me!!!! Hint: Most abundant mineral in your body.

Hey Helen!

Just wanted to welcome ya!

I'm sorry you are in so much discomfort. I suffer a number of ways, but I do not have this particular problem with glands, though my face has thicken as Chickpea said I just thought it was due to recent weight gain though, now I wonder. My face along the jaw line hurts some, but was told it was TMJ. I just really hope nothing else develops, what I deal with is more than I can bear sometimes.

Well I look forward to hearing more from you. Take care!
You have come to a very great site, we all can relate in one way or the other to the affects of SJS.

Bernice

Joy, are you referring to the parathyroids? They moderate the levels of calcium in the body...they actually contain or produce a hormone called PTH or parathormone, not the actual calcium. There can me more than 4, sometimes as many as 8.

Hi Linda, You certainly are right!!!! Have found your posts very informative the short time I have been acquainted with Sjogren's World. Am begaining to familiarize myself with different options on the website. Can see you are to our north and by the number of postings many have benefited from your words. In advance, I personally thank you for your dedication and leadership at Sjogren's World. EnJOY your weekend! :)If you still on line, give me a 'shout' back...tell me something about yourself.

Hi Helen . . . welcome to Sjogrens World.  You will find lots of valuable information here from members literally, all over the world!   :o 

Joy - you can read all about Linda and other staff members by going to the link at the top of the page.   ;D

Bucky

Hi Pooh,

I am from the Chicago area.  i am taking a trip this week for a few days.  It is very hard packing for the trip because you may need this or you may need that, an before you know it, you bag is filled and you haven't put any cloths in it.  I am trying to stay calm so nothing flairs.  To calm myself down I use something called EFT or emotional freedom techniques, it really works.

Joy,

Yes, life with SJS is an up and down road. I am greatfull for the good days and look for the beauty in nature, the trees, blue skies, birds and my flower garden.  On bad days I rest when I can.  Sorry to hear about the problems with your eyes, was it caused by SJS?  I am very interested in any homeopathic way of treating this illness if you don't mind sharing.

Thank You all for such a warm welcome

Helen

hi all!!  I'm new too!!!  Unlike many of you, my dr suspected sjogrens right away.  I am a college professor of voice who is very in tune to my mouth and it's moisture.  As soon as school got out in May,, I noticed that I had a terrible dry mouth - I thought it was nothing.  Then I kept noticing it.  Then the sores on my tongue became constant.  I called my dentist who gave me something to try to see if I had thrush - I didn't.  Then I went to the ENT - he blew me off and gave me a sample of biotene.  Then I called my GP who is also a close friend and he took me seriously and did all kinds of lab work.  Most of my labs are negative.  My sed rate is elevated but my sjogrens specific and ANA blood tests were negative.  He still thought that's what it was so he sent me to a rhuematologist.  He said he was 90% sure it was sjogrens - he said that at this point there is not need to do the lip biopsy because the end result is the same - treat the dry mouth.  After that, I researched the disease and found that my fatigue is also part of it.  Other than that, I have no symptoms - yet.  I'm hoping it doesn't progress much - my drs say it's possible that it could stay like it is now.  Of course I'm scared of the complications.  I can no longer perform because of the dry mouth.  I wish there was something to do for the pain of the tongue sores.  Any suggestions??

Voiceteacher

Hi Everyone,
I'm not new, just returning.  :) And I find encouragement everytime I read the forum.  I can certainly identify with the swollen glands under and all around the ears.  It is very painful.  I do massage the glands and sugar free lemon drops are helpful if you can stand them. ???
I even swell around my mouth.  And I have a burning tongue especially if I eat spicy foods or anything with tomatoes. 
My latest problem is with my right eye.  There is a problem with the nerve behind the eye.  So I am getting a new rhuematologist because my previous one didn't understand me.  I'm not making anything up.  I have a wonderful eye Dr.  I guess we all have to find a good team of Dr.s to treat all that comes along with sjogrens.
I'm so glad to be back and I want to say Hi to all my old friends and Welcome to all of you who are new.
Jan :)

Welcome to Sjogren's World, Voiceteacher. I've never been able to sing ( I was the one hiding in the back row of the choir when sister said "just move your lips, dear"), but I love music and I do admire your dedication to continue teaching even if you are unable to perform. I hope you find some helpful hints about treating the tongue sores. I've had some success with Oral Balance gel for moisturizing, and good old Baby Oragel to numb the areas.

Welcome back, Jan. It will be nice to have you active here, as well as in chat.

Welcome to Sjogrens World Voiceteacher!

I have used some of the Biotene products and have found them helpful...along with my sips of water or whatever liquid that seem to help at the moment.

I also take  salagen (generic is Pilocarpine) to help produce more moisture in my mouth....many of us here benefit from either this or Evoxac which is the other med prescribed for dry mouth. Were you prescribed anything from your doc?   

Welcome back Jan....good to see you posting again!