Newbie question....

[Solmom]

As a newbie to SS, I have started to rome the internet looking for information, and I believe it has confused me more. Could someone please help me answer a few questions:

1. Is this a gentic disease? If not what causes it?
2. I have read about "remission", is anyone here in remission? (a ray of hope for me)
3. Brain Fog is making me crazy, Is there anything other than prescription that worked for you?
Thank you for your help!!

[Scottietottie]

Hello Solmom 

SjS hasn't been proven to be genetic. There may be a genetic component as autoimmune diseaes tend to run in families but the diseases are not hereditary in as much as families can end up with different autoimmune diseases from each other. As many people related don't get them at all - it looks like there could be some trigger factor at work - or more than one trigger. More research is needed.

I've had a remission. I had a remission that lasted for about 10 years. It's a disease that tends to 'flare' and subside, so even without remissions people feel better than they do during flares.

I have never been given any medication for brain-fog. Plaquenil has given me a bit of relief from fatigue and has possibly helped the fog as well but in my case - the worst fog was thyoid related. When I got the thyroid meds right, the brain fog backed off considerably.

The only other things I can suggest for brain-fog is to pace yourself. Don't take on more than you have to. rest up when you can. Try relaxation techniques as stress makes everything worse. Keep a notebook and diary handy. I have an electronic organiser and would be lost without it.

Take care - Scottie 

[Solmom]

Thank you!!

[lynnmarie219]

I've always been told to keep my brain active by doing puzzles, words games, things like that. I guess as long as you keep it active...it helps...don't know if its helped me or not though... .

Something else that has helped me is to make sure that I get the proper rest/sleep.  I had to have a sleep study done and now use a c-pap for a deeper and more restful sleep so I think that helps as well.

Brain fog also bothers me as well. It can be very embarrassing when at work and has affected my work performance at times, so I also have to take Provigil which keeps me awake and also helps to make me more alert during the day. I really don't think I could work my full time job without it! Just my experience....

[Seeker]

Scottie did a good job summing up SjS.  Also what she said about the thyroid is very important.  Lynnmarie is right about the brain.  Studies have shown the more you exercise your brain the stronger it gets.  I like doing deep breathing exercises in order to help brain function.  Getting enough rest and good nutrition is important also. 

Seeker

[Solmom]

LynnMarie,
Although I own my own business, I have embaressed myself a few times with the brain fog. I have started to "hide" in my office more! Hopefully It will ease up (Im on day 3!!!)


Thanks to all who have replied! Reading the posts has halped a bunch!! I dont feel so alone! You guys are great!!!

[Pooh]

Hi Solmom,
Oh please don't ever feel alone when you're here.   There always seems to be someone here when you need us.  I've been on here at 3 a.m. and there is someone here.  

I too find the brain fog the most embarrassing part of Sjs.  That and the PN with the wobbling and staggering I do.  I always feel like a drunk.

You will get days where you wonder if you really have this disease, but then reality will set in and there it is again.  Enjoy those days as much as you can. 

I hope you will always like coming here and being with us.  We don't always know the answers but we'll try to help in anyway we can.

Hugs, Pooh

[Billydude]

From what I understand there is a genetic disposition that allows you to become subsecptable to autoimmue diseases.    In my case my mother only has Celicac disease which is an autoimmue disease but when a parent has the genetic markers for this it passes on the genes that allow you do develope other autoimmune diseases.   It could be any of the larger number of autoimmune diseases.   So its safe to say that Sjogrens in itself is not a genetic disease but autoimmune is in itself a genetic disease.
Brain fog.....just trying to type this and find the simplest words can attest to my own brain fog!    I hope there is a remission in my future.   I seem to flare in the summer the most as the heat seems to kick off everything.
Steve

[Scottietottie]

Hi 

There may be a genetic component but neither of my parents, nor their parents had any autoimmune diseases and nor do my brother or sister at this time so it's not an inevitability. (Waiting to see if my kids do as they now have bad genes on both sides)

Take care - Scottie 

[irish]

I think we all have a different story about the genetic thing. I think that my immunologist thinks that genetics is involved as he also does genetic testing and allergy testing etc. I had a mom who I know had Sjogrens but was not diagnosed. She had ALL the symptoms including the dry eye and mouth. I also had an aunt who I think had myasthenia gravis which I also have in addition to the sjogrens. Also a lot of allergies in my relation and me and my kids also. It is just a crap shoot I think.

Make sure that you get your thyroid checked for Hashimotos which is autoimmune thyroid disease. I think this is also a biggie in the brain fog. I have had brain fog off and on much of my adult life. It is such a bummer. I learned to pace myself and do some chores only when I felt like I could. Balancing the checkbook was really hard when I had brain fog. I managed to work as a nurse but I did the yellow stickies and made lists and checked stuff off, etc. I could multitask really well when I was not having brain fog.

I really think that the brain fog is much more noticeable to us than to others. I think that we are so consious of it that we fret about it. I learned to roll with it to a certain degree. When I felt more "with it" I would do certain things to get them out of the way. Made me get more organized at times. Also, I think that other people have a certain amount of this also and it is really hard to assess when we operating "over the edge" so to speak. I found that the worst brain fog I had was driving with someone with me or at home cooking and talking to a guest at the same time. It was 100 times worse doing these 2 chores than work.

Being you own your own business I would think that you could set the tone for the day or what you are going to accomplish. I always found that I perked up after lunch. It seems that low blood sugars would make me worse. Irish

[Billydude]

I did read an interesting article not long ago on the internet that talked about the specifics of the gene association but can't find it now.
Brain fog!!!!   Yes...annoying.   Its still relatively new to me.   I went to a restaurant last night and the waitress made fun of me because I couldn't come up with the word "tortilla".    I didn't think it was funny!!!
Steve

[nisha]

Don't you hate it when you go to say a word and it is just not there, or even worse, you open your mouth to say somebody's name, and it is gone?  I have become very adept at calling people her or your wife or that one, but as you say, it is embarrassing.

nisha

[Billydude]

I have a new You-tube video and I talk a little more about Brain Fog.  I wish I knew why it happens.
Here is the link to my new You-tube video...
Steve
http://www.youtube.com/watch?v=hGbybu_sDa4

[Katybarstool]

Excellent video, Billy.

Kathyx

[nisha]

Good video, Steve.  I believe there is currently a study about the cognitive issues in sjogren's (brain fog).  In fact I know there is - I will try to find a link.

With driving, I don't get sleepy, but I sometimes really scare myself because I suddenly am not sure which side of the road to be on when I turn left at a divided street.  Sometimes I have just gone straight because I could not figure out where I needed to be, particularly if there is also a U-turn lane on the far side.  I try to be behind others turning left, but if I am first in line, I can get really nervous.

Does anyone else have a similar problem?

BTW, Plaquenil really helped my brain fog - though that is not an effect that the doctor ever mentioned.

nisha