Hi new Sjogren's friends!

[kristinnelson]

Hi, my name is Kristin and I have a probable diagnosis of Sjogren's syndrome.  Actually, the rheumatologist I saw told me that I either had Sjogren's or Chronic Fatigue Syndome, but that a definitive diagnosis wasn't necessary because there isn't any treatment for either thing anyway.

Needless to say, I am seeing a Sjogren's expert to either get a definitive diagnosis of Sjogren's or to figure what other autoimmune disorder I might have.  (I have two years of positive ANA and RF tests--the first year they decided they were just false positives because I didn't test positive for the couple of autoantibodies they tested.  I am negative for Ro and La autoautibodies.)  I have all the symptoms of an autoimmune disorder--on and off again fever, flu-like symptoms, nausea and ongoing fatigue.  I also have been diagnosed with sicca syndrome and have been using restasis eyedrops, which have been awesome.

I have been ill for a few  years and very ill for the last few months.  My main concern at this point is that my neurological disorders that I have are being caused by Sjogren's.  If anybody could point me to more information about that, I would really appreciate it.  It is really scary to think that your body is attacking your brain. 

My neurological disorders are both sleep disorders, are highly advanced for someone of my age and greatly inhibit the amount and quality of my sleep.   I wonder if I would be a lot more functional, less fatigued and generally in better health if these sleep disorders were adequately under control.  Part of the reason they are not currently well controlled is that I can not keep down the dosage of medication that I need.

Well, I thought I would introduce myself and my situation to people here.  I am not exactly sure how this forum works, but please feel free to respond to me with any advice or help.  I will read some of your posts and figure out how best to find some friends I can talk to about what we're all going through!

[CAT1962]

Hi, Kristin,

Nice to meet you here . I'm sorry it is because of this "stuff!" That's what I call it when talking to my family because they are "sicca" hearing it! Sorry, I have to laugh. I was initially DX with CFS, and after blood work I was told that I have Primary Sjogren's and will "probably be DX with Lupus or RA in the future..." That was last November. I tried to go natural, but gave it to Plaquenil last month. I'm glad I did! I have had terrible joint pain and stiffness for a good while, and my joints are less achy, although they do hurt a lot of the time (just less times!).

I knew I had "something" wrong with me for the last 7 yrs or so, but my GP kept saying, "Oh, you're just getting old!" LOL (I am 48.)

I take TRAVACOR to help me sleep, and because my amino acids were so low...it's a natural capsule, every night. Keep posting. This is a great bunch of Sjogies!

[hikerknees]

Welcome kristen,
I hope you find lots of good info and support here, I have.  I also heard that there is no treatment for Sjs, but I think what docs mean is there is no cure.  There are a TON of things to help symptoms and decrease inflammation and therefore damage to our bodies.  And the docs don't have time to go through it all with you like your friends here will.  Keep posting.

[Pisces24]

Welcome to the group! Great place to talk and discuss things. We all understand and either have been there or are in presently the same situation. Odd how SJS can affect us all differently.
Did your tests include ANA, SS-A, SS-B and Schirmers?   After 6 yrs they finally tested me for those and I was sooooo high that there was absolutely no doubt I had Sjogrens.  You should get a definite diagnosis. That way you can be monitored and the doctors can catch any stuff that comes up or watch it.   I got diagnosed at a teaching/ research hospital here in Iowa and highly recommend you go to one of those than the "regular" onesy specialists. All my ologists are there, they work at finding out stuff and all communicate. I'm happy with my doctors there.

Would nausea pills help you keep down the "med" to sleep?  Tummy problems can go along with SJS also.  I know myself with the prep for the colonscopy I had to have the nausea pills!  When I have a hard time sleeping I have an anti-anxiety pill I take. It usually does the trick.   Yes, not enough sleep would really affect  a lot of things.

Us Soggies generally have some fatigue.  I usually feel mine coming on so get extra sleep to combat it. Of course, when I 'get something" my fatigue doubles and I need more rest.

Work with your doctor(s) and be an advocate for yourself. Us Soggies have learned that the hard way. Be proactive with your doctors. Good Luck!

[Joe S.]

Welcome Kristin. There is a lot of information on this forum. I have been unable to take most medications for this illness so I have had to find supplements and alternative therapies that help me. Some of us have posted what we are taking in your signatures to help others find what works for them.
Basic rules for Auto Immune (AI) diseases could be:
1. Don't Panic
2. Breathe
3. Be kind to yourself

[kristinnelson]

Wow, thanks for the warm welcome--I wasn't expecting so many replies!

Unfortunately the first doctor I saw was not very knowledgeable and really did mean that it didn't matter what she diagnosed me with because there were NO treatment options at all for Sjogren's or Chronic Fatigue Syndrome--she didn't just mean that there wasn't a cure.  This is why I am seeing a new doctor, one who might actually understand Sjogren's and possible treatment options.  Although she did send me to an opthamologist, where I failed the Shirmer test and started on restasis eyedrops, which have been wonderful.  (My left eye didn't even make it to "0" on the Shirmer test!)

I have been ANA and RF positive for two years now, without any joint pain.  Last year they just tested me for Lupus autoantibodies, and when I was negative for them they decided that that the ANA and RF must be false positives.   When they were positive again this year, they tested me for a whole bunch of autoantibodies, and I was negative for everything including the auto anti SS-A and SS-B.  Without any positive results to any autoantibodies, she basically just gave up on making a good diagnosis.  It kind of pissed me off, but it wasn't the first time I've had to look for a better doctor.

Diagnostically, I've already met the criteria for Secondary Sjogren's, the SS-A autoantibodies (again I'm negative) or a positive biopsy bump up the diagnosis to Primary Sjogren's.  If the biopsy is negative, that's when things get kind of complicated.  I'll see what the actual expert in Sjogren's thinks next Friday.

[Rose G]

Hi,  Just curious what city the sjogren specialist you are seeing is in as there are not many of them around.  I am still on a merry go round of ologists, am unable to take plaquenil (the go to drug for SS) and while I was ANA positive am now negative, but as you will see from on here...many do have SS with negative blood work.

[season]

Hi Kristin, we have a lot of info here. You came to the right place.

You spoke about lack of sleep. That has been the big thing for me also. I haven't had a good nights sleep in I can't even remember when. I have tried different meds but some of them are too strong and I am groggy the next morning.

I sleep usually around 3 1/2 hours and can't go back to sleep. Later on, I will try and sleep a couple more. I suppose this is what makes me so fatigued or at least contributes to it. My rheumy was very upset when I told her I was having a difficult time taking the meds for sleep. She said I needed at least 10 hours a night and so did my sleep doctor. I could only wish.       Eight would be great.

[kimbo]

Kristin,  Welcome !

SJW is Great support and has many answers to many questions. Its also like group therapy.   

Fatigue is a major around here. And I am also one of the sleepless. It is not a good combo.

When I was first DX . It was huge waves of fatigue and nauseous. I had parotid issue. Did not notice dry eyes or mouth yet.

I Hope your Appt. goes well for you on Friday.   

Blessings, kimbo

[Chickpea]

Hi Kristin

It's good to meet you!  It sounds like you've had a long journey here but I hope you find some answers.  You'll certainly find good friends and lively discussions!

What questions do you have about neurological issues apart from sleep disorders?  I have mostly neuro issues, and I'm one of those Sjoggies who was first diagnosed with MS; this site was started by two women who met on an MS site and discovered they had similar (SjS) symptoms.  (How lucky for us all that they met!)

Do post with specific questions and I'll try to help.  You can see details of my SjS journey on the staff page.

Let us know how your appointment goes on Friday.

Thinking of you - Chickpea