New to site/new to Sjogren's

[Lenore]

Hello everyone,
I'm brand new to this site and also new to Sjogren's.  I am amazed to find it is so much more than just a dry mouth.  My doctor mentioned it to me last summer but I was in denial and thought my dry mouth was due to Lyrica, which I took for Fibromyalgia.  The symptoms of Sjogren's and FMS sort of overlap, so I've been living with the fatigue and muscle/joint pain for quite some time.  I was diagnosed with FMS in 1996 and have pretty much learned to deal with it.  I call that reaching a place of accepting the illness and then doing all I can to take care of my health.  Sjogren's is another story.  I feel discouraged that I have to contend with yet another illness.  I can't seem to drink enough water or use enough Hall's Refresh lozenges to relieve my symptoms.  I'd sure be interested in any recommendations any of you might wish to share.  Looking forward to making friends here,
Lenore

[Bucky]

Hi Lenore - welcome to your new Sjoggie family.  There are several members who have Sjogren's with overlapping diagnoses.

Some of the products that are helpful for us Sjoggie's are:  Biotene products for your mouth - they make a mouthwash, toothpaste, rinse, etc.  My dentist office recommended these.  Have you seen a dentist lately?  You will find out (if you haven't already) that the lack of saliva can do a number on your teeth even though you are diligent with your dental hygiene.  Some members also chew sugarless gum that helps with moisture.  As with any products - it's all a personal preference.

You don't mention if you have the dry eyes too.  Two of the products I use are GenTeal Drops and Systane Preservative Free drops.  Some also use Restatis which is a prescription eye drop.

There is a lot of information here on this forum.  If you are looking for a specific subject, if you type that in the search box to the top left it will take you to all the previous posts about it.  If you can't find what you are looking for, or want to start another topic, you can do that too.

It does take a while to grasp that our bodies are changing and we can't do all the things we use to do.  That's where this forum is so helpful as everyone here is in the same boat.  We understand about the fatigue, flares, etc. that maybe other family members / friends just don't get.

This forum is literally worldwide - so there is usually someone here almost 24/7.  The majority of our members are female, but we do have men here too dealing with Sjogren's.  Unfortunately, we also have some young children inflicted with this disease too - however, their parents are here on the boards trying to find information to make their children as comfortable as they can.  You will find that you have to be your own advocate for your health.  Especially with Sjogren's - many doctors don't know much about this disease.  You will learn alot from each of the members here.

Again, welcome.
Bucky

[Katybarstool]

Hi Lenore

Welcome from me to. I second Bucky with the Biotene products. Actually, I only use the oral gel, but I find it very helpful. Recently, I even used the gel in my dry nose.

Lots of friendly people are sure to pop by and welcome you, so I will just say 'hello!'

Kathyx

[jaygee]

Hi and welcome, although I'm sorry to hear your diagnosis.  xx

[Patze]

Hi Lenore,

Let me also welcome you to the SJS World and family!  Please do peruse the old topics when you have some free time as there is a lot of information, and it just might answer a question or two for you.  If you don't find any answers there, please do ask as there is usually someone about that might be able to help.

I sure understand how frustrating that this must be for you trying to figure out where one thing ends and another starts, shucks, I've been trying to figure that out for five years now.  I too have fibro, and throw in Hashimoto's for sport, and that makes things a bit more interesting, ugh. 

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

Take care -

Patze

[Scottietottie]

Hi Lenore 

Welcome to Sjogren's world. 

You talk about coming to acceptance of Fibro. Acceptance comes for SjS too but usually takes a while. Same process I reckon. Apart from meds to relieve dryness - what have you been given? Have you been offered Plaquenil or Prednisone for instance?

I hope you find the site useful. I know you'll find it friendly!

Take care - Scottie 

[lynnmarie219]

Hi Lenore and welcome to Sjogrens World!

I'm another one who has both sjogrens and fibro....along with various other diagnoses thrown in to make it all interesting as Patze says.... .

I agree that you will come to accept that you have sjogrens with time.....you will learn what you can and cant do and when you may have to allow yourself some additional rest...but that doesn't mean that your life as you know it is over.....life goes on....just with adjustments from time to time!

Feel free to read all you can here and ask any questions that come up. This is a safe and friendly place with a lot of very knowledgeable people who are willing to help out whenever they can!

Welcome to the family!

[harlin]

Hi Lenore
Welcome to Sjogren's world. I to haven't been here long, but let me tell you, you are in the right place. Everyone here is so friendly and welcoming. There is so much info that your dr's don't tell you.
huggs, harlin

[harrigan]

Welcome Lenore, looking forward to getting to know you, though sorry we have to meet as a result of being unwell.  XX Ailsa

[dragontail]

I too am new to this site. I hope I am doing this right. I was told I had Sjogren's six years ago and am still learning more about it. I recently came upon a situation and would like to know- Is it possible that my son got Lupus because of me? five months ago it hit him suddenly and hard. He lost 35 pounds in three weeks, had to have surgery on an elbow from infection, had a mild heart attack and has RA. I have the RA, the dry mouth and eyes badly. I also have degenerative bones. I know it is hereditary but can it be inheredited and mutate to Lupus?

Hi Lenore - welcome to your new Sjoggie family.  There are several members who have Sjogren's with overlapping diagnoses.

Some of the products that are helpful for us Sjoggie's are:  Biotene products for your mouth - they make a mouthwash, toothpaste, rinse, etc.  My dentist office recommended these.  Have you seen a dentist lately?  You will find out (if you haven't already) that the lack of saliva can do a number on your teeth even though you are diligent with your dental hygiene.  Some members also chew sugarless gum that helps with moisture.  As with any products - it's all a personal preference.

You don't mention if you have the dry eyes too.  Two of the products I use are GenTeal Drops and Systane Preservative Free drops.  Some also use Restatis which is a prescription eye drop.

There is a lot of information here on this forum.  If you are looking for a specific subject, if you type that in the search box to the top left it will take you to all the previous posts about it.  If you can't find what you are looking for, or want to start another topic, you can do that too.

It does take a while to grasp that our bodies are changing and we can't do all the things we use to do.  That's where this forum is so helpful as everyone here is in the same boat.  We understand about the fatigue, flares, etc. that maybe other family members / friends just don't get.

This forum is literally worldwide - so there is usually someone here almost 24/7.  The majority of our members are female, but we do have men here too dealing with Sjogren's.  Unfortunately, we also have some young children inflicted with this disease too - however, their parents are here on the boards trying to find information to make their children as comfortable as they can.  You will find that you have to be your own advocate for your health.  Especially with Sjogren's - many doctors don't know much about this disease.  You will learn alot from each of the members here.

Again, welcome.
Bucky

[Bucky]

Hi Dragontail - welcome to your new Sjoggie family too.  (By the way, I loved to watch the kids show "Dragontails" when my son was younger.   )

I am not a medical person, from what I have read in some instances medical issues such as autoimmune disease do tend to run in families.  We do have members here on the forum who have family members dealing with other autoimmune issues too.  We also have a few members who have siblings with SjS.

I hope you find this site helpful to you.  There is a lot of information here.  If you have any questions, want to vent, or offer any suggestions feel free to just jump right in. 

Again welcome.

Bucky

[roetta]

 A big welcome to both of you, Lenore and Dragontail! What Bucky said about this being a family is so true. This is the place I go when I need a little TLC. Or when I just need to vent. Everyone here understands!!

Lenore - you will eventually come to terms with your new diagnosis. We all do in our own way and time. It took me awhile. I denied it, tried to keep doing everything like I had before, wouldn't even take my meds. But my body had other ideas. I now take my meds like a good girl. And I'm learning to pace myself.

Like someone else said, life does go on. It's a different life, but it's still a good one. I do not take things for granted anymore. I notice the little moments and enjoy my family more.

[Lenore]

Thanks so much for the warm welcome.  You all have made me feel that I am not alone.

I am using Biotene products at my doctor's recommendation.  Other than that, I am currently not prescribed any medications.  However, I see my doctor in 2 weeks and have made an appointment with my dentist.

After reading the many tips and recommendations I find I have one question.  Are there certain foods or beverages I should avoid?  I love hot and spicy, but I am wondering if that would aggravate the mouth sores.  On the other hand, theway I make it could be considered strong enough to kill bacteria!   

Wishing everyone a happy new year.  I'll look forward to meeting you here and learning a lot!

[Bernice]

Lenore,

I too love hot & spicy, I don't suffer the mouth sores, BUT my stomach REBELS and oh the heartburns from gerds.

[Patze]

HI Lenore,

I do get sores (look something like cankers) a lot these days, but I'll still eat spicy when I can.  And like Bernice, I'll eat it until the old stomach just raises cain with me, and unfortunately, that is way too often these days.  Do you have any stomach issues by chance (not all members here have problems with their stomachs, lucky them!)?


Patze