Sjogren's?

[CleverName1219]

Hello everyone. My name is Melody. I'm 24. I would like to take the time to describe some of the symptoms I have been having in the hopes that my hypothetical diagnosis can be confirmed or disconfirmed. Let me start at the beginning...
About a year ago I started having severe pain where my neck meets my head. Not too mention a knee injury that ocurred about 3 years ago that just never seemed to get better. I have always had dry skin and also have a rash that doctor's call Tinnae Versicolor. It comes and goes as it pleases and has done so since i was 16. I have had recurrent mouth ulcers since the age of 11.
In June of 09 I began to have a dry, closed feeling in my throat. An ENT called this globus hystericus.
In September of 09 I visited my primary doctor for symptoms including:
Dry mouth and throat, Burning nose,Burning eyes and an outbreak of ulcers on my tongue and inner mouth. He told me to go to a rheumatologist to be tested for Sjogren's Syndrome and Lupus
These symptoms lasted about 2 weeks and went away.
In October of 09 a rash appeared on my right leg. It spread from my knee up to my thigh. While the intensity with which it itches varies greatly from day to day, it has never completely gone away. It also appeared on my face, next to my eyes. That disappeared but every now and then the area it was present stings really badly for a brief period of time.
In November I found out i was pregnant.
In January the dryness came back and some new symptoms appeared. These include:
Burning palms, sensitivity to light, burning lips (which even develop tiny sores around them, mostly on the area between my upper lip and nose.
sore joints in hands and swelling in wrists ( my OBGYN says it is too early to associate these with pregnancy).

My first rheumy appointment is on Feb 10th. I really feel like I cant get a doctor to take me seriously. Is this is a big deal? Does this sound like Sjogren's to anyone who has it? I would also like to mention that i live in New Orleans and these symptoms seemed get worse when it is cold outside. What do ya'll think? Can this kill me? I'm really scared and worried. Especially about the baby.

[susanep]

Welcome to the family. Hopefully you will find out more when you go to the Rhuematologist.
Congratulations on your baby! The Rhuematologist will be able to help you with any concerns there.

Your symptoms do go with sjogren's , but the doctors will be able to know more I hope. I  have the dryness,burning,joint pain, ulcers in my mouth as we speak. So I will be thinking of you.

Take care, and let us know what you find out.

susanep

[ScottishLass]

It can often feel that all you want is an answer/diagnosis and all too often it takes soooooo long. I really hope your appt with the specialist can bring the answers and treatment you need quickly.
This is a fantastic site full of supportive (and very well informed) individuals and I am sure you'll find it very helpful to be able to come here for support/answers too.
Good luck and best wishes.

[wen.uk]

Many congrats on your baby hun x x
Your symptons do seem to tie up with Sjogren's - I hope you are lucky with your rheumy appointment and he can give you some answers as to what the problem is.  Keep us all updated won't you.
Gentle baby tummy pats ! x x x

[yankeeinthesouth]

CONGRATS ON YOUR BABY. BUT SORRY TO HEAR THAT YOU ARE HAVING PROBLEMS AND GETTING NOWHERE WITH THE DR'S. I HAVE BEEN DX'D WITH SJOGREN'S IN JULY 09 AND I HAVE SOME OF THE SAME SYMPTOMS AS YOU. I HAD BEEN SICK FOR SEVERAL YEARS AND AFTER SEEING SEVERAL DR'S SOMETHING LOOKED WRONG IN MY BLOODWORK BUT THEY COULD NOT FIGURE OUT WHAT WAS WRONG WITH ME.
I ENDED UP BEING SENT TO A DR THAT KNEW RIGHT AWAY WHAT THE PROBLEM WAS. I LIVE IN BATON ROUGE AND HE IS GREAT AT FINDING OUT WHAT IS WRONG, AND HE DOESN'T DISMISS YOU LIKE SOME DO. HE WILL KEEP LOOKING UNTIL HE FINDS OUT WHAT IS WRONG WITH YOU. IF YOU WANT HIS NAME AND # I WILL GIVE IT TO YOU. IT MAY BE WORTH THE DRIVE UP HERE FOR YOU AND YOUR BABIES HEALTH.

[CleverName1219]

Hey everyone!

Thanks for responding. You know, it's not the diagnosis that scares me so much as the severe unpleasantness I experience on a daily basis. It's hard to keep my eyes open for more than 20 minutes at a time, it hurts to breath through my nose and even eating is difficult with regards to how dry my mouth is. It's like a constant distraction. Not to mention I'm always so tired.
Can ya'll give me any tips on how to deal with the symtpoms?
I tried drops for dry eyes and nasal spray and even some kind enzymatic mouth spray...but alas...to no avail.
Bebedryl doesn't help much either.  I don't see why it would (my OBGYN suggested it) considering it's for runny nose and watery eyes...I wish my eyes were watery. Sneezing and itching is not the problem. It's burning and stinging.

[navydad]

Your OBGYN can do the simple blood test to check your ANA,, or if you have the anti-bodies to SS,, its not that big of a deal, and I just will never understand why Doctors cant just do the simple things, like run the bloodwork,, MY Goodness,, its not that big of a deal,, now you have to wait till the 10th,, and wait for him to order the bloodwork,, and wait some more for results,, its maddening isnt it

[Prairie Gal]

Congratulations on your pregnancy, Melody!  I'm glad you'll be seeing a rheumatologist soon because if you do have Sjogren's (SjS), the sooner you get treatment, the better.  SjS is difficult to Dx because not everybody has every one of the symptoms.  Some of us have Sjogren's, Lupus, and Fibromyalgia and the symptoms overlap.  My blood tests came back 'normal' but my rheumy recognized my symptoms as being from SjS.  The Dx was confirmed by a lip biopsy.  (They make a tiny incision inside your lower lip to remove a few salivary glands so they can check to see if they're abnormal.)

Your baby will also benefit. He/she might have something called heart block, where the heart beats very slowly.   I thought hard before I wrote that because I don't want to scare you.  But you said you were scared for the baby.   Heart block is very treatable and your dr. just needs to be on the lookout for it if you have SjS, even though the chances are good it won't happen to you.  You also wondered whether, if you have SjS, it can kill you.   No, hardly ever.  SjS is just a bunch of very bothersome chronic symptoms.   You probably can't even begin to see a light at the end of the tunnel right now, but with help from a good dr., you should gradually see your symptoms improve.

Meanwhile, you want help for your dry eyes and mouth.   Many of us use eye drops and mouth moisturizers you can buy OTC.  Some use eye drops hourly until they get to see a dr. who will prescribe Restasis, which helps a lot of people.  It helps to put OTC eye drops in OFTEN; brands that work for me are Systane, Refresh, Optive and Soothe.   If you have to use OTC drops more than 4x/day, you should get them packaged in individual vials.  They're more expensive, but the preservatives in the bottled kind can cause problems with frequent use.  I often buy mine at Costco unless the drugstore is having a sale and I also have a coupon.

After you open the vial of drops and put a couple in your eyes, wait 1-2 minutes, then add more drops.  Repeat this until the vial is empty.  This procedure saturates your eyes and can help a lot.  OTC drops work well for me and when mine are really burning or stinging, I use Celluvisc; it comes only in vials.  These drops are  thick so your vision is blurry for 10 minutes, but they feel great, especially if you keep them in the fridge.  When your eyes are dry, they burn, itch, and are very sensitive to sunlight.  Not fun.

Another thing I do is put a damp washcloth in the microwave to warm it up, then hold it across my eyes.  Sometimes I have to repeat this for 10-15 minutes.  Our eyes have 3 different layers; my opthalmologist said to think of salad dressing! One layer is watery; 1 is oily; and 1 is like mucous.  Putting on the warm compresses helps stimulate the flow of oil.  If there's not enough oil, your tears evaporate too fast.

Many SjS patients take Exovac or Salagen; both are prescriptions that help produce more saliva.  I don't need them, but use Oral Balance gel for my dry mouth, mostly at night because I'm not nearly as dry since I've been taking Plaquenil (Rx by rheumy).  I used to have aching joints and muscles a lot, but that hardly happens anymore.  Plaquenil is a good drug for many people, so if you do get a Dx of Sjogren's, your rheumy might prescribe it.

  I use Biotene toothpaste because it's not harsh when you have a sore mouth.  My dentist told me to use ACT mouthwash because it has no alcohol to sting your mouth and also contains fluoride.  There's a product called Rincinol (OTC) that is a soothing mouth rinse and helps sores heal.  I also dissolve salt in a glass of warm water -- about ? tsp. in 5 or 6 oz. of water -- and use that to rinse my mouth in the morning and evening when I have sore spots.  It also helps heal them.

I use regular Saline nose drops from the drugstore to help dryness there.  As I said, though, I'm not nearly as dry because I take medication.  My worst problem is fatigue, but, after 8 years, I've learned to pace myself and not do too much two days in a row because then I'm wiped out.   I take Flexeril a couple of hours before bed; it helps relax my muscles.  Good sleep is hard to come by when you have SjS, unfortunately.

Melody, my heart goes out to you.  You are so young to have all this happening to you. I wish you didn't have all of these symptoms to cope with at a time when you should be enjoying your pregnancy.

Take care.
Prairie gal

[eyeamdry]

Wearing glasses or goggles both inside (especially in the winter) and outside can help by holding the air flow and breezes away from your eyes and help retain moisture.  Lucy

[Bernice]

Congratulations on your pregnancy!

Do do as suggested and have your doctor test you for sjogren starting w/ blood work. Go to dentist to get a second oppinion if your doctor or test says no, have your eyes tested for dryness. Find a doctor that will treat your symtoms and closely montor you and and baby, last but not least-Try to as hard as you can to enjoy this time in your life

Peace & Be Blessed!
Bernice

[CleverName1219]

Thanks again! Ya'll are great! Thanks for being so friendly.
Someone mentioned the arbitrary nature of doctor's doing bloodwork. I've thought the same thing. I went to the E.R twice for these symptoms, even told them I was supposed to see a rheumy to be tested for lupus and all...and they didn't even draw blood or take a urine sample. They just sent me home. Getting the rheumy appointment took 5 months in itself.
I actually ended up having to drop a class (I'm in college) because the class was all reading. Like 50 to 60 pages a night...and I literally couldn't do it. I couldn't look at the pages long enough to read them. It was an honor's class too. Kind of a bummer.

Thanks for the tips regarding dry eyes (possibly the most irritating symptoms because it effects my everyday activities.) I'm looking forward to getting up on the morning and trying them out. It's weird, yesterday my eyes weren't as dry as usual (back to dry today) and i realized how much people take being "normal" for granted. I mean, for every hour that passed without discomfort, i found myself thanking the universe for the break.

That reminds me of another question. Dryness. This can only be determined by a test I assume? Because if i touch my eyes (which i avoid because it stings so much) my finger has moisture on it. Same with my mouth. Neither is paper dry. Is dry just used a term to mean less fluid than normal?

[Bernice]

Hey Clevername 1219,
You may very well not notice how dry your eyes are on your own, just because there is moisture there does not mean there is enough or that it is there always as it should be!

I did not realize just how dry mine were until I went to doc. I had become so used to them being like this, same with my mouth.

I am sure sorry to learn that your health is affecting your studies. Go see your doc. and insist that they take tests or find another. Go to dentist if nothing else, they can be helpful, there's a doctor that can help you without you having to wait forever!

[Prairie Gal]

Melody, I feel for you.  It is frustrating, to say the least, to have to curtail your classwork because your eyes are bothering you so much.  You're right:  we don't appreciate when our eyes are working properly.

We feel burning and itching in our eyes, but can't tell how dry they really are.  I don't know what the standard is in order to call an eye 'dry', but itching and burning mean they're dry enough to cause discomfort.  The discomfort can vary from day to day, too. There are tests eye drs. can do to check how many tears you produce.  One is called the Schirmer's test. They tuck a skinny strip of special paper a few inches long just inside your lower lid and let it hang down for a certain number of minutes.  Then they can measure how far down the strip there is moisture.  One of my eyes is twice as dry as the other.

I had another test done -- don't know the name -- where they put a couple of drops of a special staining solution in each eye.  The stain sticks to the dry areas.  If they'd done it at Hallowe'en, I'd have scared all the little kids, because I had all these deep greenish-blue streaks in each one! 

It's important to treat your eyes, because if they're dry too long, your corneas can be damaged.  So I hope you'll start by saturating them with OTC drops.   One more thing:  keep using the drops at regular intervals; I put drops in just 4x/day now, but if I forget to do it at lunch time, by 4:00 p.m. my eyes start to bother me.  Then it's hard to get them back to feeling good for the rest of the day unless I do the warm compress thing I mentioned yesterday.  So I seldom forget anymore.

Have you made an appointment with an opthamologist?  Sometimes they're the ones who tell a patient they think they might have SjS and to make an appt. with a rheumatologist.  Dry mouths can be caused by many things, including ordinary antihistamines, but really dry eyes are a good clue you may have SjS.  Though, as I said before, SjS is difficult to Dx; it can mimic other things, unfortunately.

I hope your appt. with the rheumy on Feb. 10 goes well, Melody.  It might be a good idea to write on a card a few questions you want answered.  I do that now, so I don't kick myself on the way home from the appt. because I've forgotten to ask something.  I think you've gotten enough good tips from everyone here that you'll be able to ask what you want to know.  And if the rheumy doesn't seem to want to do the usual blood tests for SjS, Lupus, etc.,  right away, I urge you to push for them.  You gave us a good synopsis in your first post, so consider doing a paraphrase of it at the appt. so the rheumy will know how your symptoms have hit and how they have progressed.

Take care,
Prairie gal

[CleverName1219]

Yes. I intended to do that (print out the first post for the doc).
I tried the eye drops. I bought Refresh drops and it is like a gelly liquid. It works for about 30 minutes then i have to reapply them. But some relief is better than no relief.
with regards to seeing a opthamologist, that was my next step if the rheumy didn't find anything. It just seems like since my mouth is dry too it can't be something exclusive to my eyes. I think an allergist may help too if the rheumy can't.
I can't help but wonder what else it could be. I thought maybe it was weird allergies, and i went crazy and did my house over with cleaners and dust removers and fur removers and even got rid of two of my cats. But it didn't work.
I'm beginning to get dismayed because the problems are beginning to subside a little and i'm scared if they go away by the time i see the rheumy, he won't be able to make an accurate diagnosis. They lasted about 3 weeks this time.


Went to OBGYN today. The babies heart and growth is excellent and I am having a boy!

[Prairie Gal]

Melody, that's terrific news about your baby!  I was really glad to hear that everything is going well with him.

Don't worry about your symptoms subsiding to the point where the rheumy won't be able to Dx you.  He may order blood tests to rule out SjS, Lupus, etc.  It would be wonderful -- in one sense, anyway -- if your blood tests were definitive and you could get a solid Dx quickly.  Many of us have our blood tests come back 'normal'  but a rheumy who has experience treating SjS, etc. will consider everything you tell him.  My rheumy said he was taught in medical school to treat the patient, not the lab tests.  Lab tests are just one tool.  Even if he/she doesn't think you have SjS or some other autoimmune problem, be sure to stress how much you need relief from your symptoms.  Also be aware that because it's difficult to Dx an autoimmune problem, you may not get very many answers at your first appt.  So don't get discouraged.

I mentioned the opthamologist because you'll need to see someone who knows the best way to deal with dry eyes, and an opthamologist can be the most helpful and can determine if there's any corneal scarring, etc.  Don't take chances with your eyes.  I'm glad the Refresh drops help somewhat; it sounds like you used Refresh Liquid gel.  Celluvisc is made by the same company and is a very thick drop so stays in the eye longer.  I hope you'll  try the warm, damp cloths a couple of times a day, too.  That should also give you some relief.   I had dry eyes for 11 yrs. before my other symptoms popped up and I got the SjS Dx; the dry eyes alone were not enough to suspect I had SjS.

Does anyone on either side of your family have any kind of autoimmune (AI) problem such as lupus, scleroderma, rheumatoid arthritis, Hashimoto's thyroiditis, or Crohn's disease?  AI problems often run in families.  It was when I told the 4th dr. I saw with my weird symptoms about my brother having an AI problem (not SjS), that he said, also considering all my symptoms, he recommended I  be referred to a rheumy. 

Take care of yourself and your baby-on-the-way! 

P.S.  When are you due?

Prairie gal