New Sjogrens Dx

[blueiguana]

Hello,

I'm newly dx with Sjogrens.  My ophthalmologist noticed my eyes were quite dry (something that had been bothering me for about a year and I had chalked up to an rx, however I was no longer taking the rx).  Based on my history with low thyroid he sent me to my GP thinking it was Hashimoto's.  My GP, who is known as a great diagnostician, talked to me and suspected Sjogrens based on dry mouth (again I thought due to the rx), and fatigue.  I did test positive for ss-b, not for ss-a.  While reading through other's posts here I've seen people mention an ANA value I believe.  I didn't see that on my lab work.  She may not have requested it.  During the follow up my GP was comfortable making a Dx without a lip biopsy (thank goodness!) based on symptoms, eye stain fm my eye Dr., and positive ss-b.  For now she will continue to treat me (I don't have to see a rheumatologist yet) which is great...one less Dr to deal with!  We agreed based on the number of drugs I already take for thyroid/cholesterol/migraines/depression that the less I take internally the better if I can help it, so we'll try treating the dry eyes/mouth/skin.  The difficult part will be teasing out when I'm feeling so tired I can't get out of bed and ache all over...is that the depression or the SJS and when do we start treating as the SJS?  Up until now I just assumed it was another down day(s) and hopefully would pass.  To be honest, finding out that some of that could be due to an actual, physical ailment is kind of validating.  I know it shouldn't matter.  If I feel lousy from the depression that is valid nonetheless, but society doesn't make us feel that way.  And after, we don't 'look' sick, do we.  Love the spoon theory, btw and thanks to whoever posted that (can't remember).  I have it saved on my computer to show my husband at some point.

So that's the attempted condensed version.  I've been a stay at home mom for many years (tried to go back but it was too much-now it makes sense).  I have three boys (high school & college aged), and a very supportive husband.  He has to be told things lots of times and doesn't see what I think should be obvious, but he'd do anything for me.  I've been learning lots of tips from reading posts already.  My crock-pot is going on the wet-bar behind the family room, so thanks for that tip, our house is soooo dry.  The humidifier for the bedroom just got here today.

Thanks for 'listening'.  No one else knows what this even is.

BI

[Styx]

During the follow up my GP was comfortable making a Dx without a lip biopsy (thank goodness!) based on symptoms, eye stain fm my eye Dr., and positive ss-b.

That's plenty Welcome!

I would consider getting on Plaquenil (hydroxychloroquine). It may help with the fatigue.

Styx

[Saundra]

I'm sorry you have this stuff but this board has been great for me in the short amount of time I've been here. 

XOXO

[jazzlover]

WELCOME!!

[MaryBee7]

Blue, humidifiers are saving my life, just got two.  One small version is on my bedside table and has both cool mist and warm vapor.  It is great, as I run it all night long and know that it helps.  On the new dx, my heart is with you and know many others here feel the same.  You are very lucky to have a primary care physician willing to treat you!  Hate to be bitter but that I am...rheumatologists are not my favorite MDs.  I was so grateful/relieved/nearly excited to find out WHAT THIS IS after suffering so long.  Rheumy dismisses most of my continuing complaints because he can't see proof in blood work.  It is absolutely DEFLATING.  Plaquenil has helped fatigue somewhat but not as I hoped.  I'm also in Imuran.  I'm afraid that being sick so long without treatment has already done some damage.  There seems to be so much controversy about remission.  My dentist thinks I'm nuts because I haven't experienced it as I was led to believe I would.  I've had so many cavities/root canals this year alone that you might think he would "get it" but does not.  I still believe if this were a predominately male disease, it would get more attention.

[blueiguana]

Thanks everyone for the warm welcome.  It feels so good just to connect with others that can understand.  I get that no one wants to see another person post an 'I'm new' thread because you know what that means for them, but to have somewhere to learn from others and talk about what's going on is wonderful.

Styx - I'll read up on the Plaquenil and mention it at my next appt.  Thank you.

MaryBee - I can appreciate your frustration, as well as bitterness, over needing to see another Dr., especially one that you feel works only by labs, not by symptoms.  I do know how fortunate I am that my GP will continue to see me and treat this.  Her practice has been closed for years and she took me on years ago as a favor to my mom who was a patient at the time.  She is very personal and caring.  I drive two towns over to see her.

Speaking of dentists.... Ugghh!  When I read about the issues that SJS patients have due to dry mouth I broke out in a cold sweat, literally.  I am terrified of the dentist, an unnatural fear.  I probably haven't been in over 5-6 years.  I am great about my kids and have taken them every 6mths since they were little, but I hate it.  I am blessed (or at least I was) with enamel like steel and haven't had a cavity since I was about 10 and had all my molars filed...without novocain.  Thus the fear of dentists.  I have made an appointment and hope for the best.  I did switch to biotene toothpaste and for the first time in a year I could brush my teeth without my mouth feeling like it was on fire!  Such an improvement.

[Styx]

Rheumy dismisses most of my continuing complaints because he can't see proof in blood work.  It is absolutely DEFLATING.

I hate your doctor too That is infuriating.

I do think the female-preponderance is a factor, but also, I think a lot of the medical community have low morale because of so many failed clinical trials. Also, since it rarely kills, they don't want to over-treat. The latter is also upsetting because quality of life is so so important.

[Ark mom]

I am totally healthy and normal according to my bloodwork, too.  Absolutely nothing wrong, except TSH levels showing subclinical Graves.  There is no proof whatsoever of my incredible struggles this past year.  My symptoms were so bad that everyone thought I had an MS episode.  While, it is still possible that I have MS, despite a normal brain and spine MRI with contrast, my symptoms point more toward Sjogrens, especially since I have been having symptoms for about 20 years.  MS lesions would normally show up by then. 

I am so lucky to find a rheumy who is willing to aggressively treat me despite no objective evidence.  I had things very mild for so long until recently when my flares turned debilitating and wouldn't stop.  It is like the disease was just dancing near the edge of a cliff for twenty years then decided to jump off. 

I took Plaquenil for 7 months (still on it) with little improvement, and so now I am starting methotrexate and feeling somewhat better. 

I have a major fear of dentists, too, as I was abused by a dentist as a child.  He would hit me if I cried.  For years, I had to be sedated for a teeth cleaning or any dental work at all because of that.  Now, I take halcyon for big jobs and just brave it for cleanings.  I found a nice lady dentist who is very sensitive to my anxiety and health needs.  Keep looking to find a kind dentist.  Regarding my major fear with the dental issue, I cannot imagine having a worse disease.   I mean, really?!!!!  Seriously?!  I have to have a disease that massively magnifies the amount of time spent in a dentist's chair?  This is like a twisted dark comedy.  Can I switch to a romantic comedy now?

Welcome to the group!  Get cozy and learn a lot! 

[Saundra]

blue


I also hated dentists and still do for a good reason.  If I had found this board a month or so sooner I probably wouldn't of opted to go ahead and get upper dentures.  I might of but I would of tried some other things I've seen on here first.  They look good but I have a hard time wearing them.  If I could afford a better dentist I might have more luck.  There's a ton of experience on here, if you don't see it ask before doing anything major or spending a lot of money. 

XOXO

[Mrs.Tinsley]

Hello!! I'm 34 year old female just been dx with Sjogren's. I have had back pain for over 15 years, then bone cracking came about the last 12 years or so, now joint pain everywhere. I have not been able to do anything the last two years no work. Laying around all the time, activities of daily living is a job, cooking,cleaning washing my hair etc. I had to have some form of arthritis to.I will have my first R.A appointment in Jan 2013.

[blueiguana]

Mrs. Tinsley,
So sorry to hear about your Dx.  Good luck at your appointment today.  Living with that type of ongoing pain that has led to such a reduction in your ability to function and live your life over the last 15 years has to be so upsetting.  I hope the RA is helpful in getting you on some meds that will address your joint pain as well as the progression of the Sjogren's.  Sending you positive energy today.  I know the early rounds of Dr.s appointments have been very grueling on me, emotionally and physically.
BI

[ashewoman]

Welcome Mrs. Tins...

You've just joined the club no one ever aspired to be in but I hope since you are among us you will be able to benefit from the support, gentle hugs, and experience of your fellow sjogrenians.  LOL  I think I made that word up... but I got some serious brain fog going on... its like pea soup in my head right now darling so if I can complete this post with just that one funky word I'm doing great!  LOL  Enjoy the humor, the companionship and finally meeting a group of people who "get it".  So sorry you got it too but I welcome you with gentle hugs nonetheless.  GG

[blueiguana]

Yes, the lovely 'brain fog'!  I tried explaining this to my mom the other day.  She flippantly said "Well, you can easily pay attention when it's something you're interested in." like I'm some petulant child who simply choses what to focus on, turning it on and off.  I tried to explain it was in fact a medical condition..."well, maybe to you dear but no one else considers 'brain fog' a medical term.".  Okay mom, cognitive disfunction, is that better?!?  Seriously, the name is what she got stuck on?!  Wait until she get's some brain fog of her own and I tell her she's being selective and it's her choice.  Ohhhh!!!  Sorry, I love my mom and am really not that vindictive but it just burned my rear-end to be invalidated like that. 

[ashewoman]

Yes, the lovely 'brain fog'!  I tried explaining this to my mom the other day.  She flippantly said "Well, you can easily pay attention when it's something you're interested in." like I'm some petulant child who simply choses what to focus on, turning it on and off.  I tried to explain it was in fact a medical condition..."well, maybe to you dear but no one else considers 'brain fog' a medical term.".  Okay mom, cognitive disfunction, is that better?!?  Seriously, the name is what she got stuck on?!  Wait until she get's some brain fog of her own and I tell her she's being selective and it's her choice.  Ohhhh!!!  Sorry, I love my mom and am really not that vindictive but it just burned my rear-end to be invalidated like that. 

You're mom and my dad must be from the same cloth.  He says brain fog is something everyone has and some people complain about.  I'm thinking well apparently not everyone has it to the degree others do.  I've gotten to where I ignore his barb of "Well, I'm exhausted too but that's because I worked all day" or "If you could get a job testing mattresses you'd be a great success."  They don't get it and they probably never will.  Now I complain to you guys because I'm tired of getting ridiculous insights that are anything but insightful.  Got a new "friend" who is harping on me right now like I'm a project for her to complete.  She takes all my realism and calls it negativity.  I find that people with chronic pain have a healthier sense of what is real and what isn't than most "normies".  Saying I hurt when I hurt isn't being negative.  It's being honest.  One of us will eventually "train" the other or give up trying and I'm no longer trainable when it comes to pretending everything is alright.  See I don't see that as being positive.  I see it as being fake.  Saying I'm fine when I'm not is not something I'm capable of anymore.  AND I like to think that is a very positive change!  GG

[slccom]

Sadly, there sometimes comes a point where certain toxic people need to leave our lives. However, before you reach that point, look up "butyoudontlook sick" and let your loved ones read the spoons theory. That seems to reach a lot of people.

But if they just don't even want to get it and just add to your stress level, it is time to consider ceasing to spend time with them. We already have enough problems.

I hope you can get through to your friends and loved ones before you have to shut them out.
Hugs, Sharon