RECENT DIAGNOSIS

[Port]

I've recently been dianosed with Sjorgren's and honestly I'm a little overwhelmed with trying to learn more about it. Some of the stories I've read don't sound like anything I've experienced and I'm wondering if I'm being naive to what is to come in the future. I understand that this disease, like all others, affects each individual a bit differently so for right now, I'm concentrating on keeping a positive attitude and trying to learn more and more about Sjorgren's. I'm hoping through this forum that I can do this. Thanks to all

[KellyG999]

Hi Port. Welcome to the forum, although I am sorry about your diagnosis. NONE of us want to have this disease, but many of us find answers, support and encouragement here.

Yes, SjS affects us all differently. I struggle with dry throat, swelling and trouble swallowing. (Scary...) Others have more problems with dry eyes, pain/fatigue, etc. Also, be aware that many of us have other diseases and conditions which are someties hard to separate from Sjogrens, like RA, Lupus, IBS, Fibromyalgia, etc.

Good luck and thanks for reaching out. There are great people here.

KellyG

[Joe S.]

Welcome Port. Sometimes Sjogren's starts small with symptoms that you can hardly notice. Over time it may add other symptoms. The trick is to find what management techniques work for you. That is why I recommend "Spoon Theory" to new members. I also posted something on pain management on this site.

[Jellyb]

Hi Port!
Welcome and ask as many questions as you need to. There are a lot of very educated helpful people here. This forum has been a god send for me.

[Carolina]

Welcome, Port.

Sorry bout the diagnosis.  But you can get lots of support, information and an opportunity to laugh and cry as needed.

Sjogren's is part of a constellation of conditions, and each person experiences some of them and in different ways.

Don't try to figure out what is coming next.....   Actually NO ONE knows that in life, not just people who happen to have Sjogren's.

There are lots of tips and tricks to help with whatever seems to be your particular concern.

Also, people who have a diagnosis of Sjogren's and experience next to no problems, are not posting here.

They are busy with their lives.

Even those of us who have some of the conditions that aggravate us, manage to carry on.

After all:  How can we be sick when we look so GOOD?

(that's a joke).

Breathe in:  I am
Breathe out:  calm

That's from Joe S. who has much wisdom.

Welcome again.

We're here if you need us.  Relax.  Enjoy the 'ride' that is life.

Keep us posted.

Hugs

Elaine

[Port]

Thank you!! Your kind words help to think that maybe I'm not losing my mind.     I plan on keeping a close eye on the forum and gain lots of information from each of you. Thanks again!

[mshistory]

Hi Port and welcome! I was diagnosed with SjS this year too and at first was completely taken aback by my diagnosis. But since then, I've learned a lot more about Sjogren's and have realized how many of my symptoms do correlate to primary SjS. I do have dry mouth and a long history of dental problems, but I also have a lot of fatigue (HORRIBLE fatigue at times), joint pain, a persistent dry cough and pressure in my chest (I suspect lung involvement is fairly common with primary SjS), hair loss and weight loss. I am on Plaquenil 400 mg daily and it has helped with the joint pain, and I know it seems like a silly suggestion, but as long as your dry mouth isn't severe yet, sugar free gums and sugar free hard candies actually can help alleviate the discomfort of dry mouth (I've been chewing sugar free gum like crazy lately - I've found this lemon flavored gum that really seems to help!)

[tracyj]

Hi Port,

Welcome to the site.    I was recently diagnosed too, although I'd had many symptoms for years.    This site and its many members have been a wonderful source of information and a very welcoming community for me - I hope that you find it helpful also.

Tracy

[Pisces24]

Welcome to the Group!

I know you are trying to learn as much as you can about SJS and that can be overwhelming. Nobody had a crystal ball on what will happen in the future with their Sjogrens. I've been what my -ologists call "steady abnormal" for 10+ years.

My journey to find a diagnosis started because my gp didn't like my blood work as my white cells were steady slowly climbing and I was getting 5-7 sinus/throat infections a year. Heck I just felt "normal" but he had me try to find a reason so  I got to see a bunch of wacky and lazy doctors, I'd see one awhile, be told I didn't need to come back, think I was "cured" and gp says Nope and sends me to yet another one. (Repeat/Repeat) 

My -ologists told me I could stay the way I am , slowly increase in symptoms or change quickly. They just really do not know.  So I am just taking it as it goes and being monitored in case something does come up. Nobody has any guarantees so you might as well enjoy you life along the way instead of letting it put you on emotional hold.

Good Luck!

[Still in the hunt]

I thnk with this disease there are two things you have to realize,, its either just a annoyance,, or you end up wondering what part of your body is trying to kill you on any given day,