Jaw tenderness

[molly]

I am not under a rheumatologist - was diagnosed with mild sjogrens several years ago.  I was prescribed hydroxychloroquine - could not take it - tried 3 times and was told that I must never take it again.

I have not been feeling good over the past few weeks and my jaws are very tender......I dont really know what to do about this.....there is nothing i can take.  I feel that nurofen might be helpful but cannot take this because of stomach problems.  Any ideas on the best thing to do please.

Also- why do the jaws become so sore and tender

Thank you anybody.

[Scottietottie]

Hi Molly 

I think you need to see your doctor and possibly your dentist. Your jaw could be tender becase of swollen glands relating to Sjogren's or it could be sore due to dental problems but then you'd probably have toothache as well.

It sounds as though the Sjogren's could be going through an 'active' period. I know some people don't get severe symptoms but SjS is SjS and can be progressive although it isn't always. It's a very 'individual' disease and can be unpredictable.

I think you should have a rheumy to check for progression.   I'm not medical - so this is just what I think.

Take care - Scottie 

[Pooh]

Hi Molly,
Are you taking anything like Actonel or Fosomax the bone building meds?

I agree with Scottie, you really should talk to your doctor about this. 

Pooh

[trector1955]

Hello
     I just found out I have Sjogrens a few months ago. I also have Fibermyalgia. Well My jaw gets tender. infact its hurting on the left side right now. sometimes I can't chew on foods such as bacon. weird!!  When I am on the computer I use to put on one hand under my jaw but now I can't cuz it hurts. Same when I sleep I use to put my hand under my face but now my jaw and my hand hurts. I have always had weird stuff like that happening to me it seems like forever. Just wanted you to know I have the tender jaw. My glands below my ears hurt and are big some days bigger.
Thanks Threresa

[molly]

Many thanks for your replies - very grateful.
Scottie, I dont think the problem is dental at all....doesnt feel like it - it feels more glandular than anything.
Pooh, no, not on any of those meds you mention.  I just think that i get a bit glandular and that my parotid glands get a bit inflamed.
Theresa, I am sorry that you have the problem too - strangely, the left side is worse for me too....and the glands come up all around the ear area too - like you.  It is good at least to know that I am not alone......it is a pain though isnt it.  I hope that yours eases for you.
I think that if my stomach could take it - nurofen or aspirin might be good - but sadly cannot take them.
Take care all - thank you again

[Scottietottie]

Hi Molly 

I'm not allowed to take NSAIDs or aspirin but I am allowed to take Tramadol and paracetamol and they give some pain relief. You need to see a doc to see if there's something out there that will work for you!

Take care - Scottie 

[Victoria05202000]

My first symptoms of SS was jaw and gland tenderness.....or errrr PAIN!  I looked like a chipmunk when I ate something and the pain was horrible when my parotid glands swelled.  I get to the doctor and let them give prescription pain meds.  I hope you feel better soon.

Take care!
Vicky

www.sjogrensandme.blogspot.com

[lesleyjoy]

Hi, I also had sore parotid glands when I first got the dryness symptoms, but luckily they didn't swell. After 6 months this resolved. I used to massage them several times a day to get any gritty bit's out of them. I still do it every night, to get the saliva flowing (a tiny bit) 

Hope this helps,
Lesley (NZ)

[molly]

Thank you all for your replies and help - wishing all of you better health - hope thaings improve.
It is not nice to hear of people suffering obviously but it is re-assuring at least to know that others have similar symptoms and we arent just going mad.

Can I possibly ask anybody whether sjogrens `flares` like lupus....i.e. can you have periods when things are not too bad but you just have slightly dry mouth and eyes etc. but feel essentially well - and then other periods when lymph glands come up, mouth is bone dry, aches and pains, sinus problems, thyroid gets inflamed and jaw tenderness and pain etc - even esophagitis and tummy problems get worse and generally feeling very unwell and flu-ish......This seems to happen to me - I have a period of time - could be months when I feel `okay-ish` and then out of the blue I will suddenly be unwell and it will continue for about 6 weeks and then quieten down.....it feels like inflammation is diminishing and you start to feel better - I will also feel anxious when feeling particularly not well and i alsways thought this was psychological - but i think it is because the general inflammation tends to also inflame my thyroid - my gp tests it every year and an ears, nose and throat consultant found during a general examination that my thyroid was inflamed about 4 years ago - i had scans and it showed just a few cysts of no real significance - and that the thyroid was very slightly enlarged but nothing to worry about - it tends to border towards hyper - but bloods stay within normal range - I just wonder why my thyroid only seems to play up when I have this `flare up` of not feeling well....and then as i start to feel better it quietens down........I cannot take hydroxychloroquine - nor ibuprofen or aspirin or any kind of anti-inflammatory..

I have considered asking my GP whether I could be referred to a specialist/rheumatologist - I was under a local one a few years back but he was useless...did not want to know and eventually discharged me...I think the problem is that, they have a room of old people waiting to see them who can hardly hobble around and then a young `ish` (not that young!!) person walks in who seems to `look` okay who hasnt really got anything significantly wrong with bloods other than a slightly borderline ana which is also sometimes normal - and a slightly raised esr and they cannot be asked......They dont reaslise how ill you can be when you have `flare ups` of illness. 

I dont know whether I should actually be under a specialist at all.....I also worry that if i was referred to one, I would see him/her whilst being essentially well and would feel like a fraud....also, i dont really know what they could do for me anyway because I cannot take the drugs that a top specialist/lupus expert prescribed me - i tried three times to take the drug and it was decided that i should never take it again.

In an ideal world I would like to see a doctor - somebody nice - that is essential - who will know my whole history/health problems and be contactable when i have a flare of illness.

Can I ask for any opinions please - I am still confused by this illness....sometimes I wonder whether it is the sjogrens making me ill but I suppose that it is........Can sjogrens flare?  Also would I seem silly if I did get a referral to see a specialist but was well when I saw them - to sit there and tell them what happens when I `am` unwell.

Sorry - very long post - I must sound quite mad too.

Many thanks......very best wishes

[molly]

PS sorry - the drug that I cannot take is antimalarials.

[Linda196]

Hi Molly, You've asked some very good questions that I'm sure others have wondered about, too.

First the simple answers: Yes, SjS can flare just like Lupus, and the flares can vary in length, frequency and severity. If you do live within a cycle of flare and remit, it can seem a bit odd to go to the doctor when you feel "OKish", but we can't always time our appointments to flares, so keeping a symptom diary is a good idea...that way you can show the doctor what happened, how it affected you, what triggered it and what helped make you feel better.

A referral to a specialist could be very helpful, but doesn't have to be a rheumy...with the concerns you list, an endocrinologist may be able to help more with the thyroid issues, or at least with understanding them. An immunologist might be able to "put things together" for you, and cover all aspects of the immune attack on your system. If your GP is comfortable prescribing and monitoring your medications and condition, he is a good focal point, and can coordinate other doctors.

If antimalarials and antiinflammatories are out for you, there are other drugs that could be tried. Anti-rejection drugs like Imuran and Cellcept help many people, and fall under the heading of DMARDS (disease modifying anti-rheumatic drugs) like anti-malarials. If by antiinflammatories, you mean NSAIDS, maybe a short course of Prednisone could help, or a WASP (wait and see prescription) to have on hand for flares. For pain management, non-NSAIDS like acetemenophen, tramadol, or narcotics can be helpful; many of us have "staging"RX... a few choices which we use based on how much pain we have.

You do not sound mad! You just sound like a person trying to deal with SjS...an unpredictable, little understood, invasive influence on our lives.

[molly]

Dear Linda

Thank you very much for your very helpful reply and for being so understanding.

Your reply is tremendously helpful and I think that I might make just one private appointment with the lupus specialist who diagnosed me some time ago and ask whether he might recommend a local rheumatologist or write to my GP - which they do after a consultation anyway - suggesting the best course of treatment when I am not well.

I shall do as you suggested and write down what happens during a flare...thank you for being so understanding and helpful.

I hope that you are doing okay.

Very best wishes to you.

[pudmott]

Molly
that sounds like a great plan of action. Let us know how you get on

LInda
Once again you nailed it on the head. Kudos to you my friend


Pud

[beverley]

Molly - I am in the middle of one of those flares that you so eloquently described.  As to the jaw - it is one of my worst areas when I am unwell.  It may be that you have TMJ (I used to remember what these initials stood for, but my brain fog won't let me drag them into the fore), however if you put TMJ (M is Mandular meaning jaw) into a google search you will finds sites about it and they often have non medical strategies for relieving the discomfort.  It might be worth a look, because even if you don't have TMJ the remedies can be helpful.  Sorry that you are joining us in this barrel of laughs.  Hope you feel better soon.

Beverley