Has anyone heard of these symptoms with Sjogren's?

[Denise123]

Hello,

I was hoping someone might have some insight for me here.  I've had a lab test for Sjogrens that came up negative.  And in fact, my symptoms don't match the Sjogrens classic. 
In a nutshell, I have sometimes excruciating pain in my saliva glands and lacrimal glands when they're first stimulated.  It lasts about 20 or 30 seconds but seems like forever.  I've also had a low grade fever that seems to be inching it's way up.  I've been to several specialists (ear/nose/throat, opthamologist, rheumatologist, endocrinologist and maybe a few more, I've lost track.  Had a sialogram (now that was unpleasant!) and I don't have any stones.  My current physician wants to referme to an infectious disease specialist...I don't hold a lot of hope in that either.  I was just wondering if anyone ever heard of Sjogrens manifesting this way?  I did have negative results but maybeit needs done again.  Oh, I forgot to mention I have no dryness at all.
Any advice is appreciated.

Thanks!
Denise 

[JannaLee]

Denise,

I think you must investigate this till an answer is found.

My (totally non-professional) opinion is you may, indeed have an autoimmune disease (Lupus, Sjogren's Syndrome) or it's a funky infection.

My Sjogren's manifested much like your symptoms but without the fever.  The thing is, Sjogren's is kind of related to Lupus and the symptoms can overlap.  What I'm saying is, you may have Sjogren's Syndrome (which doesn't usually present with fever as Lupus does) without the dryness (like me).

Sadly, these autoimmune diseases are notoriously difficult to diagnose, sometimes taking several years.

I'm not saying this very well!!

I have Sjogren's Syndrome and symptoms very much like yours.  BUT you absolutely should investigate the fever aspect and rule out infection.

If it were me, I'd ask for another Rheumatological opinion at a LARGE TEACHING hospital (even if you have to drive a ways for it) AND I would also get the referral to an infectious disease guy for his opinion.

Ugh..I hope I've helped you, sweetie!

Janna

[Patze]

Hi Denise,

Let me welcome you to the SJS World.  Please do peruse the board as there is so much information here it's scary (in a good way)!

I've also had sharp nerve pain in the glands and along my sinus's and around the mouth for years now and no doctor or dentist has been able to tell me why.  I know what you mean as the pain is unbelievable - I don't ever want to have another one of those again.

I'm not in the medical field and this is only my humble opinion, but Janna has a good point as it could be a lot of different things and don't discount an AI as they can take years to develop enough to be recognized by the doctor - it's so frustrating!  I'm also sero negative for everything including Hashimoto's (positive through biopsy), so I can understand your puzzlement.

Have you been to a major teaching facility by chance?  Or can you get to a major clinic like the Cleveland Clinic, the Mayo Clinic, or Johns Hopkins?  Can you get a referral to one of these soon?  Will your doctor work with you on this?  These are where you'll usually find the cutting edge doctors that think outside the box

Hang in there and keep us updated, okay?

Take care -

Patze

[Linda196]

Hello and welcome Denise.

The pain you describe ( I call it mumps and pickle pain) happens to me on occasion too, but not consistently (thank goodness) and seems to coincide with times that I have extra swelling.

We've all learned that SjS can cause just about any kind of mouth pain, but not everything can be blamed on SjS so it's important to keep on the diagnosis trail until you get an answer. Take advantage of whatever specialists are offered, because it's sometime the fresh eye or different approach that "breaks the case".

[lesleyjoy]

Hi there and welcome  Have you had a Schrimers test done for dye eye? Quite often we can feel that our eyes aren't dry when they actually are! You may have mild, dry symptoms going on even with you mouth and not realise it. I opted for the MRI of the parotid and lacrimal glands and all was clear. The sore parotid glands (without swelling) came just before the mouth dryness started then disappeared after 6 months.

Here's hoping it clears up soon,
Lesley (NZ)

[irish]

Linda is right!!!  It is the mumps and pickle pain that can drive you to your knees. I have had this off and on and one time I had it many hours. It can really be miserable.

The way I have learned to manage it is to take Aleve or Ibuprofen when it starts and place heat on my glands and then massage them gently. Also, I have run a lot of low grade fevers with my sjogrens and I usually can tell when my temp is just a little elevated as I feel ill and yukky(my medical term).

Janna is right though. You do need to get a diagnosis if possible. Also, be sure to go to the doc if you show signs of infection such as swelling, redness in the gland areas, pain and elevated temperature. You will know if you have an infection versus a sluggish salivary gland that needs some massage to move the saliva. Be sure to drink enough also. Irish

[Denise123]

Thank you all SO much.  Cleveland Clinic is approximately 3 hours away, that's probably my best bet.  This is really incredible for me to have people understand what I'm talking about!  Doctors don't know what to do with me half the time.
I have one more question that I'm half afraid to ask...does any kind of treatment ever help the pain?  I think if it lasted for any length of time I would go insane.  Oh Irish that must be terrible.  I suppose I could go on   a regular regimin of Ibuprofen, but my doctor wants me to try to hold off in case it masks anything else that would be helpful in identifying the root problem. 

[JannaLee]

Denise,

I think there are options that will work for the pain but I completely agree about not taking ANYTHING till you're sure all tests are done.  Apparently "anti-inflammatory" medication, which would certainly help with this can jack-up (false negative) some test results.  And low dose steroids would too.  They would also knock out your fever and other indications you are unwell.

The pain is actually a gift to you.  It will help you stay motivated to find an answer.  If it's autoimmune, sooner is better than later, diagnostically speaking.  I hope you can get some appointments lined up at Cleveland Clinic ASAP!

Janna

[Nathan]

You don't, by chance, get frequent infections do you?

[missyb]

when I am in a flare up I get a low grade fever 99.9 ish in the late after noons, I get sharp pains in my salivary glands when I eat something sour, or starchy

[Denise123]

As far as frequent infections, seems like I have a sinus headache quite often.  Don't know for sure if it's infection or not though.  Seems to coincide with the pollen and allergens.  My temp ranges from around 99.4 up to around 101.6.  Pretty much all the time and it's been that way for a couple years. 
Do people with Sjogrens get infections? 

[Jane]

The first symptom I had was excruciating pain in one parotid gland or the other (or both) when starting to eat. It only lasts a short time but doubles me up ! I have found regularly massaging the gland clears the saliva and relieves the pain. If it works you will feel a gush of saliva. Now I occasinally have a pain in the salivary gland under my tonge. It feels as if someone is sticking a needle in.
Hey ho ! The joys of Sjogrens ! Jane

[Babs659]

Denise, I have been experiencing a feeling as if I have a fever and sinus infection---but I don't---for over a year now, with increasing frequency.  I just feel like I'm really coming down with a bad sickness, but it doesn't progress to anything else.  I've been on antibiotics several times due to this.  Turns out it was the Sjs making me feel this ill, which I was just dx with in December.  Since I've been on Plaquenil and Medrol it happens less frequently and less severly, but it still happens....

[Patze]

Hi Babs,

Same with me, it feels like a sinus infection is starting, with all the usual symptoms, but I don't get the fever, and it can go away in a couple of days or two to three weeks, I never know.  I've wondered if that has anything to do with my hearing problems of late?  The ENT didn't know either. 

Anyone else having this kind of problem?

I'm on Plaquenil too, but it still continues and it seems to be more frequently lately.  Interesting.

Take care -

Patze