I think I have Primary Sjogrens Syndrome

[DryKY]

New to this forum so please bare with me.  I am a RN with 25 years experience who recently obtaines my BSN and was planning on starting back to school next fall for my MSN for nurse practioner. That was until these weird hodge podge of symptoms hit me this summer and have greatly affected my quality of life.  I have had sensioneural hearing loss for years but with aides functioned will.  Suddenly this summer (I spent a great deal of time in sun for the first time in 15 years),  I felt like my hearing was extremely muffled and like my head was full of cotton.  I also could not pop my ears but have this weird clicking sound intermittently.  Next I had bronchitis, but, symptoms were different than I had in past (3 times).  My lungs and airways felt inflammed and dry, dry cough no sputum not even normal smokers cough AM sputum Ive had for 1.5 years now. Took steroids and antibiotics.  Next goopy runny eyes, thought I had pink eye=eyedrops prescribed for pink eye,  these symptoms improved except for hearing which continued to be weird, I can hear my own voice in the back of my head very loud but have a hard time distinguishing what is being said to me by others.  At times sound, speaking near my left ear is very irritating to me especially on phone its like nails on a chalkboard.  I now have to hold phone to my right ear.  Had increased reflux symptoms and started belching frequently (new).  Suddenly started waking up every 1 hour at night d/t extrmely dry and sticky mouth and to urinate. Got so bad I was miserable, running on adrenaline with little sleep.  Begged my doctor for help.  By this time due to insomnia I had discovered Sjogrens.  With a steroid dose pack and Ativan finally was able to sleep in 3-4 hour increments and felt some better,  7-10 days after completed steroid pak symptoms were back and bad.  dry sticky mouth, dry eyes, dry ears (use to have moistness in ears freuqently) dry nose (sorrry to be gross but, no buggers), dry itchy skin. Worse a panicky and isolated feeling because of my hearing issues.  Begged my doc for 1 more steroid dose pak until my appt to see ENT would come.  He complied but, told me to stagger them to make them last instead of taking like package says.  Again felt a little better.  but, am scared to death that when the steroids are gone I will be miserable again.

     Other symptoms I am having and wonder if others do are
1 the hearing issue
2 numb hands
3 pain in abdomen
4 difficulty with bowels
5 clicking in ears
6 dry mouth is worse at night or when lying down. 

ENT was not very helpful except to order the specific sjogrens test (LO"s),  already had negative ANA but CRP and WBC counts were elevated ESR was negative.  ENt advised me I was too nervous and strung out over my symptoms and this could be making them worse.   Well, let me just say I have never been this distraught at a doctors appt before, I am not pyschsomatic, I AM SICK!! something is wrong with my body and I don't know what it is but I sure have alot of Symptoms that align with Sjogrens.  I have a self made (referred ) appt with a rheumy in 2 weeks.  I am at wits end with the fatigue and insomnia due to dry mouth.  I work 12 hour nights luckily part time but I have a family to care for also (14 year old triplets, spouse, sick parents)  I do not have time to be sick   

Frustrated and Know my body and know something is wrong.  I feel like crap.   I also have dry eyes and bad taste in mouth and thrush frequently now
any advice is welcome.

[Joe S.]

Welcome to the forum. I am sero-negative. my diagnosis was on symptoms when I asked the doctor, "Dry eyes, nose, mouth, skin and A$$, what do you think it is?"

Some of us have put in our signatures what we are taking. I have chosen to go with supplements. Before trying anything check for drug interactions, counter indications and side effects.

I believe management is the key to living with this disease.

Don't panic! Panic, anxiety, will increase your pain.

Breath! When you are in pain, your muscles lock trying to protect you and this cuts off oxygen to the muscle. You hold your breath. By breathing you can relax and lower your pain.

Meditate. I use a simple meditation to help with pain levels. It should be practiced when your pains are lower. In a comfortable position close your eyes and look to the top of your head. As you breathe in think "I am" and as you breathe out think "calm". Try to repeat for 15 min. I also use this to help sleep. I have a different form for migraines.

most of us will accept PM's (Personal Messages).

[cccourt1942]

Hi DryKY,
    I was going to respond to your other msg (hearing problem) when I noticed this particular post.  I was going to say sounds like hearing aid feedback.  That is a simplistic explanation.  I cannot think of any other until I saw you have sensorineural loss.  This changes everything.  I can only hope you are seeing an audiologist who can determine and explain these phenomena driving you nuts. 
    2nd post: Oh geez:  I  guess your age to be about 50.  And you are at a crossroads in life where you can go forward--and have a plan.  My profound fatigue began in late 40s.  I'm 75 now.  Back then EVERYTHING that age was menopausal.  Fast forward 15 years & retired, still worked in my field P/T.  I began to have everything:  "pink" eye treated, sialadenitis, gastro problems,  chronic hacking cough. Sleep? I was Rxed Xanax.  Still, dry mouth resulted in waking.  I'd wake up coughing.  Until I was dxed, I didn't realize I was choking in the night...but I perceived it as choking.  I couldn't swallow as I had no saliva.  NO sleep it seemed.  After I would urinate, drink water, and lie down again, I would start coughing.  Many days would go to work after being awake from 3:00am.  Blessing was work day was 4 to 6 hours. 

I continued Pilates and walking my treadmill each a.m.  Every 6 months amount of time spent decreased amount of time. Did keep pain at bay. 

I'll cut to the chase:  I had zero idea what "it" was.  Actually, I thought it was the myriad of symptoms...not a single thing.  Dx came by fluke and was definitive at age 71.  I was still doing therapy 3 to 4 days a week.  Drinking water, having a session, peeing, drinking water, repeat.  I was told, and meds began.  This was a slow process--but successful.  And what I can tell you about a positive vs. negative diagnosis (and this is because I went for 5 tough years of those ramped up symptoms being partially treated) is you can get medicines for your conditions with or without a SjS dx.  Notice that NO Restasis ad states it is for Sjogren's patients.  It IS.  But not specifically.  You can "just have" dry eyes and be treated with the drug.  Your mouth can be clinically dry and you can be prescribed a med for that.  Don't let the disease define your treatment.  As Joe has mentioned: you can be sero-negative.  No matter what your test results are, you can still ask for the meds.

As to the hearing nuisance (which must interfere with your work) as I've already stated:  see an audiologist for an explanation.  You may need new hearing aids.  (this is only if I am correct believing it's feed back....I don't really know.  Just background information in my field)

Remember: with your family, your plans for further education, and your job, frustrations come because you have plans!  That adds to the overwhelming fatigue you have.  Calm down...and take it one step at a time.  It's hard when you have all those plans. 

In the meantime:  buy an eye drop which comes in individual vials (no preservatives in them), Xylimelts (for dry mouth) are OTC and available at Amazon if you can't find locally.  Biotene oral balance gel (again avlbl on Amazon if you can't find locally) will help your oral cavity feel  a bit normal (short term).  To the gastro issues, AFTER dx I learned (on this forum) when saliva is limited, the esophagus lacks the normal coating it should have.  I believe Joe was the one to point out less  normal mucous going down causes our gut issues.  We lack that normal element.  I forget how much saliva we secrete each day.  Google it: It's a LOT.  And water is an instant fix, but it goes straight thru us.  You can't help but drink copious amounts, but until you start with one of the saliva meds, you don't get any real relief from the sandpaper dryness.  And...you just keep on going to the bathroom..day and night!

I hope you have luck finding help.  One thing you didn't mention, your teeth.  Find a dentist who knows the effects of dry mouth.  This can help you more than you can imagine in the future.  My teeth (at about age 60) just turned brown (well...streaked). Anyway...that's the worst for me.  No dentist can understand how I still have teeth.  I went for years being casual with my mouth.  AND...I had great dental insurance.

Keep us posted.  And if you are not diagnosed: INSIST on meds to help your symptoms.  Oh..the Medrol packs:  you are too young for them to treat you with this continuously.  When I was your age, I had a GP who would give me Medrol packs for sinus infections.  He was our community's "teacher physician":  he kept teachers working!  However, he would never Rx more than two a year.  He told me I would need this drug when I got old. Boy was he right.  And now?  I take low dose prednisone (LDP) at 3mg per day.  They won't do this for you kiddoes...as they wouldn't for me lo those many years ago.  As I type that I realize I had nothing 25 years ago which even called for LDP. 

Best to you,
ccc