hi all I need help many ?

[karleesgranny]

I have been lurking here for a while trying to get info and see how much we are all alike and what the differences are.  Ok ( deep breath ), I have had many of my problems since 1999.  they have ranged from joint pain to muscle pain and spasms neropathy, fatigue, nausea etc... Well I was first dianosed with fibromyalgia, then RA., and then I was told that I dont have RA and I have been told that I have Thorasic Outlett syndrome and rupture disc in my neck.  And degerative joint disease in my spine which i now know is osteoarthritis.  Well, now i have been told I have sjogrens, positive antibodies (ana and ssa) and lip biosy.
well i have always had problems with mouth sores (always meaning since all this started) but I think its as bad as it has gotten now.  I woke up feeling like the under side of my tongue and all the under the tongue stuff was like swollen and sore I had a black spot on the side of my tongue yesterday but it is more red today it has been hard to eat anything today my mouth is so sore.  The glands under my chin and in my neck appear to be swollen.  I guess I just want to know if this is typical for sjogrens.  I am already taking Plaquinil 200mg twice a day salagen 4 times a day, naprosin 550 mg twice a day,elavil 50mg at night flexiril 20 mg paxil for depression (with all this who wouldnt be depressed) phenegrin for nausea hctz for blood pressure which i never had a problem with until now.  I am so tired of this ride and I want to get OFF!!!!!!! HAHA  thanks in Advance and sorry its so long

[Linda196]

Hello Karleesgranny, welcome to Sjogren's World

Sounds like you fit right in with us! Have you found some of the answers you were looking for by browsing the posts, or did you want to ask some specific ones? As you've probably already seen here, if one person doesn't have your experience or an answer, the next one along just might, because we all travel along this SjS road with different baggage, but we at least travel together!

[lynnmarie219]

Hi Karleesgranny and welcome to Sjogrens World!

Yes your symtpoms sound very familiar!

I'm glad that you found us here and felt comfortable enough to jump in and take the plunge to introduce yourself to everyone! Come back to visit often as you will find not only a lot of information, but also support and friendship among all of the members who come here....its a wonderful and safe place to be....at least I think so!

[ruby52]

I had a terrible bout with mouth sores and swelling along my jaw line.It went on for several months.Going away and coming back.My Rheumy called it Lupisy symptoms .In other words she didn't know why.Very painful and exasperating I know.Out of the blue it went away and hasn't come back.I suspect it's something that will pop up again.They tried a Medrol dose pack and it lessened the severity but I can't say it took it away.Much as I would like a definate answer to these weird symptoms I'm learning they just don't know.That's all I can offer fro my experience.
                                                                           Ruby

[Scottietottie]

Hi karleesgranny 

Welcome to Sjogren's world!

How long have you been on the Plaquenil for? It can take up to 6 months to work. 200mg didn't work for me but 400mg did but I'm quite big and that can make a difference to dosage.

It's possible you need some steroids like Prednisone to settle things down a bit. I'm NOT mediacl - so I could well be wrong but it would be worth seeing your doc and letting him know about the swollen glands.

Biotene mouth products can be helpful too.

Take care - Scottie 

[Tryfan]

Hi there,  I did the same thing as you and read a lot on this site before I posted anything.  I think regardless of test results and diagnoses, you still don't want to go that step further sometimes because it's acknowledging the whole thing to yourself in a way....how I felt anyhow.  Now I know that joining this site was a brilliant thing to do because it has given me the support I needed and I'm sure it will do the same for you.

I am so thankful that you posted in more ways than one....not only to add to the welcomes but to say that you are the first person who I have read about who has had a diagnosis of Thoracic Outlet syndrome as part of the big picture (me too!).  I realise that Sjogrens may well be the responsible party but I do also have an extra bit of muscle attached to my first rib which constricts the circulation down the side of my neck and into my left arm....as though we haven't enough to deal with..  Do you do any specific gentle exercises for the TOS?  I find that Pilates is brilliant but only when I'm not flaring.

I know what you mean when you say you want to get off the 'ride'.  It's certainly a roller coaster but sharing all this evens out the peaks and troughs a bit so it's not so much of a bumpy ride!!

Maryx

[Joy Cox]

Hi Karleesgranny, I, too, am a granny and a proud one with SS diagnosed in 95 though know I had it for years before J.Hopkins diagnosed me. You mentioned glands. Are you referring to those along jawbone? Have found getting some type of salve and starting at bottom of ear and massaging in circular motion until I find gland that hurts and then apply some pressure directly with thumb or other suitable finger and many times have gotten them to release. Oh what a wonderful when they do and oft times that good sweet tasting saliva will flow. Have been told that 90% of saliva glands are in bottom of you mouth. So go for it. Those glands in front a ear are usually related to the parotid gland and don't remember if they have anything to do with saliva, but do not think so. My right parotid gland gives me a 'fit' and have on numerous occasions it has been suggested by dental field that proably have TMJ but think it is SS related parotid gland involvement since had upper right Parathyroid gland removed which had 3 gram tumor attached that had exploded and gotten into nearby gland. One lucky lady, no malignancy!!! TNhillbilly granny :

[karleesgranny]

Thanks all for your replies, I am glad to know there are people out there who know what I am going through.  I have some friends and family who have no idea how hard it is to not be tired and sick and sore and all the many other things we live with daily.  I get so frustrated with them when they say yeah your just being lazy and stuff like that. They get on my last nerve with that.  I didnt invite this into my life it just came on its own. I guess I can complain all day and it wont do any good.
AS for the TOS that has been in my list of dxs since 1995 it was one of the first I received Then the ruptured discs in my neck and then the rest trickled on in from there.