Hello! I'm new.

[kwolfsheimer]

Hi! I'm Kelly. 

I was diagnosed with Sjogren's about 4 mths ago.  I have been living with "an undiagnosed autoimmune" disorder for about 11 years now.  It started with the joint pain, high SED rates.  Then came the diarrhea- prevalent IBS, so severe to the point that I had to leave my full-time job as a high school teacher because I couldn't go to the restroom when I needed to. I now teach college-- part-time with full-time hours.  Then came the nausau, numbness in my head, brain fog... constant sickness.  Swollen lymph glands in my neck.

Finally, after every doctor telling me that I was a hypochondriac and needed to be on antidepressants, I was diagnosed with Sjogren's (and possibly non-systemic Lupus, although still not 100% on that).  The Sjogren's symptoms kicked in full force.  I have almost no natural tears now.  I haven't developed the dry mouth yet.

My biggest concerns, at this moment, are the chronic brain fog and fatigue. If I am lecturing about something and make a reference to something- a movie, a person, etc. I can't remember the name.  I am having trouble reading and concentrating. And the fatigue is terrible.  I need to exercise more- that I'm sure of.  Also, I have been losing my hair and would appreciate any products, therapies, vitamins, etc. that can help restore hair loss.

Thanks!
Kelly 

[Seeker]

Welcome Kelly, you have become a member of a wonderful family.   You will find a lot of good information here, dealing with SjS.  Also a shoulder to cry on or vent to.

Has your doctor perscribed any medications yet?  There are some like Plaquinil, that may help.  Peruse the site and you will find much information that will help you.  There are two things I would suggest you ask your doctor about.  One is your Thyroid,  Thyroid problems are common with Sjogren's.  The second is Ceiliac.  Here lately I have been going on and on about Ceiliac.  I found out I have Ceiliac myself.  After doing a lot of research I discovered that Ceiliac disease is just as over looked by doctors as Sjogren's.  So in my own way I am trying to get the word out.  Anyway welcome again to the family.

Seeker

[Chickpea]

Hi Kelly and welcome!  I'm glad you found us, but sorry you had to.

Your story is very familiar.  I used to be a university History lecturer but had to give up work partly because of mobility issues - lecture theatres usually have disabled access for students but not for the lecturer - and partly because SjS neuro issues affected my speech and my memory.  It's embarrassing when you mix up or mispronounce the names of leading Nazis when you're supposed to be an expert in that field of study!  I found that once I got more rest that my memory was slightly better, but that's a difficult thing to manage when you're working.

Seeker is right that Plaquenil is a great med for SjS, particularly for exhaustion and dryness.  Low dose steroids can also help.  What meds are you on?  Have you found anything that helps with your digestive issues?  All the symptoms you describe could be part of SjS; it's not known as the 'gift that keeps on giving' for nothing.

Visit often and tell us how you are doing.

Thinking of you - Chickpea

[kimbo]

Hi Kelly and Welcome,

I hope you make your self at home here, and yes many of our stories are just like yours.

We share this journey together with much encouragements, compassion and great information.

I am glad you found us and you are not alone, we are here with you.

Blessings , kimbo

[Patze]

Hi Kelly,

Let me also welcome you to the SJS World and Family!  Please look around as you'll find a ton of topics on a wide variety of subjects!

Has your rheumy/primary prescribed any meds to help you?  Have you seen an opthamologist yet?  If so, what did he say about your eyes?  Yeah, my eyes are toast, but I still have a wet mouth (some days worse, some better).

Oh boy, the brain fog - the bain of my existence!!!!    Yeah, I'm still trying to figure out how to get rid of it once and for all; that sucker just ain't going anywhere soon (just teasing, but it waxes and wanes, and I so agree with you, it's so hard to function with it)!  

Again, welcome, and I hope to chat with you soon.

Take care of yourself -

Patze

[kwolfsheimer]

Thank you all for the kind words and suggestions.

In response to some questions--  I went through about 3 yrs of testing with the IBS.  Celiac, Chrone's, food allergies, anything and everything. I was on every kind of pill- antidepressants, stomach meds. I do have acid reflux and got that under control, but the IBS was eating up my life. It was horrible; I won't go into gory details, but it was getting to the point that my intestines were shredded.  I found a great gastro. dr. and he started me on Lotronex, a very controversial drug. It is technically "illegal" in the US, but I am allowed to buy it as a "compassion drug".  It was taken off the market by the FDA because several women died, mostly from faulty prescribing and lack of care.  It basically shuts down your intestines- at least most of the receptors. I have to have a special sticker on a written prescription and the average bottle costs about $800-- $200 with my prescription program.  It has been a God-send to me and I live a normal life on that account.

I have only seen my rheumo. dr. once. That's it... and a whole other story.  He was forced on me by my general doc due to the fact that he is in the practice. I have been on diclofenac for several years for the inflammation.  I see that many here are on Plaquenil. I do have an eye doc and have been on Restassis for about 3 mths.

This information is just what I need... to read what others are doing, so I can arm myself with knowledge.  I have found with my long-standing experience that I have to be my own advocate.  It is such a relief to hear that I am not "crazy, lazy, a hypochondriac, or just a whiner."   Many thanks!

Kelly

[Scottietottie]

Hi Kelly 

Welcome to Sjogren's world from me too.

Take care - Scottie 

[Poochie]

Hi Kelly,
Welcome to the family.

In reference to your hair loss, do you by any chance have a thyroid condition?  Also you said you may have Lupus.

Both of these will cause hair loss until treated. 

I hope you will join us regularly, there is a lot of information here and lots of people that will help you along on your journey with this insidious disease. 

And NO, you are not crazy, lazy or anything of the sort.  Just about all of us have been through the same trip as you.  It sure is frustrating.

Good luck and join us often.

Pooh

[Bucky]

Hi Kelly . . . .

WELCOME FROM ME TOO!!      
Bucky

[lynnmarie219]

Hi Kelly,

I'm jumping in late here...but I want to welcome you to Sjogrens World! As you have already seen you can feel free to read as much as you want to and ask any questions that come to mind...someone will always be around to help you out or share their experiences! This is a safe and comforting place!

And to echo what has been already said... you are NOT "crazy, lazy, a hypochondriac, or just a whiner."  I'm also glad to hear that you have already learned to be your own advocate...thats what we all have to learn to do no matter how good (or bad) of medical care we are getting!

WELCOME!!!