hello~

[oescharao]

Hi everyone! It's nice to finally get a chance to introduce myself. I'm 17 years old and I live in the USA (though I won't say where specifically). I found this blog while googling Sjogrens and decided to join up so I can meet people who have been dealing with this autoimmune disease like me.

My rheumatologist diagnosed me last year with Sjogrens, but I've been dealing with strange symptoms for four or five years now. The first sign that something was off was when some of my joints started swelling. None of the flare-ups lasted for more than a day or two. I think the longest flare up I've had lasted a week with my elbow. The swelling mainly occurs in my fingers (one at a time) and makes them stiff and painful to move. When I have flare-ups in my elbows I can hardly bend my arm far enough to touch my shoulders.

We started seeing a specialized doctor as soon as my mom found out about my flare-ups. She's really savvy when it comes to medical stuff, probably because her dad is a doctor. Sometimes I think she verges on being neurotic, but my mom cares about me and I love her to pieces. Anyway, the doctor ran me through lots of blood tests. That's when we discovered the autoimmune antibodies.

My mom wasn't satisfied and wanted more answers so we started looking at other doctors. I've been to several rheumatologists and even an eastern medicine dude (he was interesting...). The current doctor I have now is the one that finally suggested the lip biopsy and the eye test.

The eye test definitely proved that my eyes are not dry in the slightest. The strips of paper they put into my eyes were so weighted down with tear-water that they stuck to my face. The eye test was not a pleasant experience. At all. The lip biopsy was something we had never thought of before. My mouth isn't exactly dry, even though I never drink more than a few glasses of water a day, and it produces spit well enough. Yet, the salivary glands they cut out of my lip tested positive for Sjogrens. I'm not sure exactly how that test works.

After the lip biopsy came back positive, my doctors decided to put my on Plaquenil. It's definitely helped with my fingers and stiff elbows, but I've been have another symptom recently that very strange and painful. Being a senior in highschool, I participate in a sport every season. In the winter, I swim for my school's swim team. My main events are the 100 breaststroke and the 200 IM. The symptom started last year in the middle of swim season. Both my elbows got really red all of a sudden and swelled up. It feels like rugburn, but when I try to straighten my arm out it feels like my skin is painfully cracking open.

I've researched eczema and tennis elbow. The skin around my elbow isn't dry, flaky or scaly so I don't think it's eczema. Also, the way it appears leads me to believe it's not tennis elbow either. I'll be sitting in class when I brush my elbow against the desk or chair and it'll be painful. It's almost like I can feel it coming because after that it swells up and turns an angry red. Taking Plaquenil hasn't gotten rid of the symptom and I've had it twice in the past four weeks. When my elbows get like this the swelling never lasts long, 3 days maximum. I take ibuprofen and Aleeve when it happens, but I'm not sure if they actually helps.

I visited my rheumatologist yesterday and he seems to think it could be some type of rash. I have no clue what type of rash this could possibly be! One that comes on suddenly (randomly) and makes elbows swell?

To be honest, I'm not 100% sure that I actually have Sjogrens. As per usual, my life is a medical mystery.  I have Sjogrens antibodies and tested positive for ANAs. Some of the symptoms I've been experiencing also match up with Sjogrens, but some don't. I also don't have a lot of the symptoms commonly associated with Sjogrens. I mainly joined this site to express my frustrations with the shortcomings of rheumatology in general and talk with people who have been dealing with Sjogrens too.

Nice to meet everyone,
~Eschara

[BarbaraE]

Just wanted to say hi and welcome.  I am new and just joined today also.  Chronic health issues are tough especially when you are young.  It sounds like your mom is doing a great job.  I know what it is like to be in your mother's shoes.  My 19 year old daughter has been chronically ill for several years and has now been diagnosed with bone marrow suppression due to chronic Epstein Barr virus.  It ruined her senior year and she almost didn't graduate and is now facing a bone marrow biopsy if her next round of blood work counts don't improve.  Too much to deal with for a teenager.  I have been reading this forum for a while now and it seems like a great place with lots of good info and support.
Good luck with your treatment and symptoms, it sounds like you are in good hands.

[Joe S.]

Welcome both of you to the forum.

Eschara, It is tough when at your age you get Dx'd with this disease. It may be some time before you experience severe dry eye and dry mouth. Enjoy the moisture while you can. Your elbows may be a sign of JRA.

I tell people that management is the first key to dealing with this disease.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

[Seeker]

Welcome one and all.

[Duchess]

Glad you are here; Welcome.

Duchess

[Meld256]

Hi Eschara, and welcome!     

(what a lovely name!)  We're glad you decided to introduce yourself. Please post away and join in anywhere.

It can be tough to deal with these health problems at your age, but it sounds like you have a really great and proactive Mom.  Having a good rheumatologist to treat you and listen is very important, but yes, they can also be frustrating.  Not everyone diagosed with Sjogren's has all the symptoms you might read about; we are all different in many ways.  With early treatment yours may stay mild, and also improve.  I hope so!

There are also others here who are around your age, and hopefully you'll connect with them, too.  (we aren't all old ladies  we have quite a few men on the boards and people of all ages)

Again, welcome and feel free to ask anything at all. You can also use the "search" box to look at past discussions.  Take care and we look forward to hearing more from you. 

Melinda

[tomsmom]

Welcome to the site.  I'm sorry you've been diagnosed with this so young.  I hope you find Sjogren's World as helpful as I have.

[Patze]

Hi Eschara,

Let me also welcome you to the SJS World and family!  I'm sorry to have to meet you this way, but sure am glad that you found us!

Please do look around the board as you'll find scads of topics and oodles of information by using the search engine located in the upper right hand side of this page.  Type in a few words on the topic of your choice and the corresponding threads should pop up.  Now if you can't find what you're looking for, don't be shy and ask away as there is usually someone about that might be able to help.

Again, welcome, and I hope that you find this board as friendly and informative as I have all these years.

Take care of yourself -

Patze

[oescharao]

@Joe S- Do you have any articles on JRA I could look at? What ages does it typically affect?

Thank you all so much for the warm welcome. It really means a lot for me to finally have a place where I can talk to people who actually understand and have been through what I'm going through. I have a good support system, and really great friends, but I feel like they can't really relate to me all that much. I don't want to burden my friends with my problems and I don't want them to feel bad for me... but I still need people to talk to sometimes.

Thanks so much <3
~Eschara

[Joe S.]

This was the first link that came up:
http://www.emedicinehealth.com/juvenile_rheumatoid_arthritis/article_em.htm

Mayo provides you a trail of bread crumbs:
http://www.mayoclinic.com/health/juvenile-rheumatoid-arthritis/DS00018

There is a couple of places to start. Enjoy the journey. I hope that this helps.