Hi...new from Florida

[charbor]

Hi everyone,

I'm a 40 year old male from central Florida. I have had many of the symptoms of SS since 2004: severe dry eyes, dry mouth, fatigue, dry skin, intestinal issues, reactions to sunlight.  It all started with a bad case of conjunctivitis.  My eyes have become the bane of my existence.  I've tried almost everything, including Restasis, steroid drops, antibiotics, punctal plugs, fish oil, warm compresses, even autologous blood serum drops, without any real help.  When I wake up every morning my eyes are bone dry and extremely red and inflamed.  I'm currently being treated by an ophthalmologist who specializes in dry eye syndrome but I'm not super optimistic that he'll be able to do much for me.

I had a positive ANA test once several years ago and have seen a couple of rheumatologists in the past, but was told that I tested negative for SS.  After reading on this site I am beginning to realize that it seems many people test negative and still have the disease.  One of the rheumatologists prescribed Plaquenil and told me to see if it helps, but I only took it for a few weeks and stopped since I wasn't seeing any results.  After reading some of your posts I think maybe I need to try again and give it more time to work.

Does anyone know of any good doctors in FL for this condition?  It's frustrating because I know something is definitely wrong but I'm told that I don't have SS since the tests are negative.  I'm not sure what to do, if anything.

Thanks for listening! 

Cheers,

Troy

[Joe S.]

Troy, as I am with most new people to this disease, I am sorry that you have it, but I do welcome you to the forum. You will find a lot of good information here. I advocate some alternative therapies.

[Carolina]

Welcome Troy:

You're in the right place.   Keep posting, asking questions, reading.

My eyes don't get as dry as yours during the night, but I think it's because I get up two or three times at night to pee (I have and auto immune inflammation of my bladder and I AM 68).  When I get up I spray my eyes and take a sip of water for my mouth.

Of course you can't keep getting up to spray your eyes.   I imagine you've tried Systane, too.   Also a humidifier right next to your bed might help.

So I  don't have any suggestions for that problem, really.

Are you taking Salagen, Pilocarpine or Evoxac for your mouth.  That pretty much solves the worst of my problem.  Unless my sinuses get blocked and I have to breathe through my mouth.  So I rinse my sinuses and use Nasonex religiously before I go to bed.

I have only recently developed the intestinal issues and reaction to sun, inability to stabilize my temperature, heavy sweating from my head.  Those are signs that there may be an autonomic component to your Sjogren's.

Fatigue and pain, and depression are all conditions of any auto immune disease.  Actual conditions of the disease, not the result of how you feel about the disease.

So I take Cymbalta and Oxcarbezapine as prescriptions.  And also L Acytl Carnetine and Alpha Lipoic Acid to help with energy, Fish Oil of course always (I also have coronary artery disease), and DHEA which seems to help me.

We all react differently to different medications and treatments.  So we all have to find our own way, with help from the other members of Team Sjogren's, and the medical professionals we consult.

Keep us posted Troy!

Kisses

Carolina

[charbor]

Nice to hear from you! After reading some of these SS stories I realize that many people have it worse than me, so I am trying to remain grateful and positive.  Thank you for your advice and for sharing so much information.  I am trying to learn.  It has been very frustrating to know that something is wrong with my body for the last few years but be unable to tell anybody what it is or why I feel the way I do.  In some ways it is discouraging because I now know my eyes will probably never get completely better, but I think I kind of came to that realization some time ago.

I currently don't take much of anything other than drops for my eyes.  My mouth gets very dry at night but it is not unbearable and I keep water by my bed.  And the fatigue can be annoying but I can still get through the day.  I would like to learn more about treatments that have worked for people, especially with their eyes, and alternative therapies, so I'll keep reading.

Many thanks!

[Scottietottie]

Hi Troy 

Welcome to Sjogren's world. 

SjS is such an individual disease. No two ppeople seem to have exactly the same symptoms. Some are really ill and others are uncomfortable. I'm sorry your eyes are giving you so much grief. Do you wear moisture chamber glasses to retain any moisture (like eyedrops) or anything?

I hope you find the site useful.

Take care - Scottie 

[elliea]

Hi Troy-I was dx'd 2 months ago but I know that I have had it for years.Today has been a particularly bad day-think I am working too hard at work(nurse).I have been on Plaquenil for 7 weeks and keep waiting for it to kick in-they say it can take a few months. Anyway, I am from Miami and I have a fabulous rheum. here.Besides being so nice and so smart, he is very sympathetic because his Mom has SS. Send me an e-mail and I will send you his name-it would be worth the trip     Lesley

[Blue Kat]

Hi Troy!  I'm also in Central FL...over on the Space Coast (Brevard County), to be exact.  I wish I could help you with finding a good rheumatologist, but I have no idea on that for our area.  Mine is just OK but he's the only one in town who takes my insurance which is why I go to him.  Good luck on everything and you'll find lots of helpful info here!