I am a new member and it is a great feeling to have found a place where I can talk about SS and related conditions with people who know and understand what life is like with Sjogren's. I have never met anyone else with SS (that I know of) and it is somehow comforting to know you are all out there. Thank you in advance for sharing with me.
About me: I am 52 yr old female and was diagnosed with Primary SS about 4 years ago. My primary complaint at that time was systemic body aches and pain. I had never heard of SS and would never have complained about my dry eyes and mouth since they were symptoms I had for an undetermined amount of time and considered "normal" for me. I now realize that my mother undoubtedly had SS as well. I can not remember her in her final years without her eye drops and water bottle at her side. Everyone thought her lethargy and daily "rest period" was just laziness---- now I know that was not true.
In addition to the SS-- I am also being treated for fibromyalgia and osteoarthritis. Nothing is clear-cut and I just continue to search for answers and possibilities. I had a partial knee replacement a year ago and back surgery three weeks later, followed by arthroscopic surgery on my other knee three months after that. More joints are involved and it is a constant challenge to lead a "normal" life.
I am sure I will have questions in the future-- but for now--- thanks for listening and I am glad to be here.
Beach
Hi Beach
Welcome aboard! I'm glad you have decided to join us.
Kathyx
Welcome from me too, Beachcomber (love the name by the way! I lived by the sea till I was 18 and still missi t! :( ) This is a wonderful place for advice, encouragement and being listened to. Post often and share your news, xx Ailsa
Hi Beachcomber,
Let me also welcome you to the SJS World! Please do look around as there are a lot of topics that you might find interesting.
Isn't it amazing that not much is really known about AI's? Whew, there is so much overlay that even doctors seem to have a problem trying to figure it all out.
Again, welcome and I hope to be able to chat with you soon!
Take care -
Patze
Hi Beachcomber,
Welcome to SjS World. Feel free to browse thru all the information on this site - there's lots!
You mention about your mother possibly having had SjS. I too, think my late mother had SjS too. She had a lot of eye issues and her daily "naps". I'd give anything to sit and talk with her about all this and compare notes. Those are questions I'll never have an answer to. :'(
They say there are 4 million people who have Sjogren's. Like you, I don't know anyone else who has this disease (except the lovely people here). You would think we'd know "somebody" locally who has this disease too. I too have Primary Sjogren's like you do.
This website is a wonderful place to come and share your Sjogren's journey with people who understand what you are going thru. It's comforting to know we have others who walk in our shoes. We're not doctors - but, we share our experiences with each other . . what works, what doesn't, our ups, our downs, our joys, our sorrows.
We also have a live chat several evenings during the week - check the schedule for your area and come join us some time . . it's fun. ;D
Again, welcome.
Bucky
Welcome Beachcomber, My little girl Jenna who is 4 has sjs. You will find lots of good hearted and knowledgeable people here. I dont have sjs myself so it helps to be able to talk to people who do so I know what Jenna is going thru. Welcome Hugs and Kisses Jonnell and Jenna
Hi Beach :)
Welcome to Sjogren's world.
I got dxd when I was about your age but I'd had symptoms for a long time before that. I've also had a partial knee replacement due to osteo arthritis.
I have never worked out what symptoms are SjS, what are osteo, what are thyroid related and what were menopause. They all seemed to overlap into one uncomfortable blur!
At least with the dx comes meds that can relieve the situation somewhat!
I hope you find the site useful. It's definitely friendly.
Take care - Scottie :)
Hey Beachcomber,
I'm with Scottie - everything blurs when you have AI diseases. I was diagnosed with SJS and osteo four years ago when I was 52, although the major symptoms had started a year earlier and SJS had been suggested to me by an opthalmologist (is that what I mean? eye specialist) who treated my painfully dry and bloodshot eyes. I also went through the menopause at about the same time which I understand can trigger the symptoms. These boards are invaluable. The people here are kind and supportive and whatever questions you have, someone is sure to have the answer.
Good luck,
Beverley
Hi Beach, welcome from me, too.
There's nothing left for me to say, other than read, post, share and enjoy our little community!
Welcome! I never heard of SJS either until I was diagnosed and I find that everyone I've talked to (except doctors) have no clue about it either. But we all know it well here, so if you have questions and comments or even need to rant, bring it on! We've got your back.
Welcome from me too, Beach!
I look forward to knowing you!
Janna
beach,
Glad you found us and I hope we provide encouragement, comfort , advise and information as you get acquainted with us and the journey we share with you.
blessings kimbo
Thank you all so much for your warm welcome. It is just so nice to know that there are people out there who understand how puzzling and awful SS can be. Sometimes I feel like a hypochondriac with my sore joint of the day. Let's see, today it was my right knee which has been buckling for a while now and is noticeably swollen and warm. My knee doctor thinks it is the Sjogren's causing it and my rheumy says it is mechanical. Thank goodness for my physical therapist who just wants to make it better...
It is a crazy spring here in Oregon. Last week it was almost 80 degrees--- this week we are waking up to frost and cold, cold winds and rain. But I can't complain too much. My daffodils are blooming and my early tulips are going to be opening very soon. I love the spring in the Pacific Northwest.