Hi , my name is Lorna, I'm 30 yrs old. I've just been diagnosed with Sjogrens. I have a lovely rheumatologist but I'm a little at sea! Where do I start looking for information ? Any support or advice would be good. I'm still digesting my diagnosis.
Looking forward to reading your stories.
Hi Lorna - welcome!
It can be quite a shock to be told you have this strange disease called Sjogren's Syndrome, isn't it? - as most people have never heard of it.
Well, the people who come to this site are dealing with Sjogren's - so, we "get it".
This page of links might be helpful to you for some information. It was compiled by one of our co-founders, Spring. https://sjogrensworld.org/index.php?topic=9459.0
If you have specific questions about anything, you can put the word(s) in the search box to the top right of this page and it will take you to previous threads about that word(s). If you can't find what you're looking for, by all means, start a new thread and ask away.
We're a worldwide community made up mostly of women, but we do have some men too.
Again, welcome . . . I hope you find this site helpful to you on your Sjogren's journey.
Bucky
Welcome Lorna. There is a lot of good information on this site. You can post your questions on the forum like you did or use the search bar to find information.
Hi Lorna :)
Welcome to Sjogren's world. Getting a dx of Sjogren's is a bit of a shock to the system. It depends how long you have been looking for a diagnoses. If it's quick - it's more of of a shock. If it's been a long time - it can be part relief.
Sjogren's is a very individual disease. It hits some people a lot harder than others. It's not predictable. It can follow different courses. What happens to one person does not necessarily happen to another.
This is a good site for looking up topics - for asking questions (and there is no such thing as a silly question) and for getting advice and support.
I hope you find it useful.
Take care - Scottie :)
Hi Lorna,
Allow me to also Welcome you to our Sjogren's World! ;)
If you are looking for information, I think this is the best place to be, so we are glad you found us. As others stated, digesting all this can be a bit overwhelming. We understand the emotions that come with a diagnosis, and how we can make our best life.
Ask anything at all, and voice any concerns you may have. We all are here together dealing with many of the same physical and emotional issues, so we do "get it." This is a wonderful place of encouragement and support, and I hope you'll find it helpful.
Looking forward to hearing more from you.
Melinda
Hi Lorna,
Let me also throw my hat in and welcome you too! :D
I too hope that you find this board welcoming and easy to use.
Take care of yourself -
Patze
Hi Lorna,
I'm new here too. It is a bit overwhelming and especially when out of the blue. I know when my Rheumy told me I was like "What? Can you write that down for me?"
This group has been really great in just the two days I've been here. I look forward to having people around who "get it" and have been there. It is really comforting.
So, welcome from another newbie! I think you'll love it here.
Hello Lorna, I'm also quite new to this forum but I must say it has very useful and comforting because SS is a diffcult illness to talk about to anyone who has never heard of it!I've had S.S for 16 years but it is only lately my symptoms have got a little worse like dry eyes,mouth and nose but I have nothing compared to others so I'm not complaining. Hope you find the information you're looking for, best wishes, ciao!
Hi folks, god I'm overwhelmed more at the fact that you have all been so welcoming & nice. And Danielle I did ask my rheumatologist to write it down. ! Thank you for the advice you have provided even On how to use the sit & search. I find some of the stories scary others heartbreaking. I'm staggering my reading so far. I've been unwell really for years but acutely since febuary, in one way it was nice to get a diagnosis & know that it's not all in my head( which I feared), but it's also very frightening to think I have this mad random thing. So I guess I'm still digesting.
My family are very supportive but now they look at me with those " are u dying eyes!?" as they simply dont understand what it is & I haven't got the patience to explain it too them at the moment.
Thank u all again for ur welcome & understanding. I'm glad I found ye. Xxxxxxxxxx
Hi Lorna,
Yep, we're pretty friendly around here. :D Try not to worry too much about some others stories being scary; we all have our own issues. Some very minor, others more involved. Your symptoms may very well get better with treatment and you could do well for a very long time.
Bucky posted a great link to some sites. Those from Spring have information about how to talk to friends and family about this, so they can learn along with you. Might want to check it out when you have the energy/opportunity. ;)
We're glad you're here and that you found us, too!
Take care,
Melinda
Welcome to the Group!
Everyone is great here. We don't discount or ignore anyone. Probably a big part of that is because we were all sooo discounted and ignored by all the dr we've had to go through prior to getting a firm diagnosis. You might get a kick out of the "Oddest Diagnosises" post I did awhile back. I wanted to found out what the most off the wall diagnosises we got.
Sjogrens symptoms are unique to each individual. We all pretty much have the "norms" with the dryness BUT the other symptoms, etc may or may not affect you. Just remember to take things as they come up and deal with it them. Don't let your disease define you as a person as you are soo much more than that. You'll get used to being "monitored" by drs but it is a good think so they can catch things quicker.
I took 6 yrs to get diagnosed. I had one specialist tell me he was sure it was some type of cancer but I wasn't sick enough. But if I got certain symptoms to run not walk to the emergency room. So for ca 4mos I am waiting for the roof to cave in and finally decided that was not the way I wanted to live my life. I hope you are able to come that to realization quicker than I was.
I basically explain my SJS as I have an immune system that is waaaay out of wack. I am sooo glad you have a supportive family. We will take the overly concerned over the "think you are faking it & lazy" ones anyday.
Hi Lorna!
Sorry I'm a little late with my welcome. As Scottie often says, I'm glad you found us but sorry you had to!
It does all seem overwhelming at times, both SjS itself and how much there is to learn. The best bit of advice I got when I was first diagnosed was to keep a symptom diary. You could have a little notebook where you write down symptoms, what seems to make things better/worse, what you've been eating, what the weather's like etc. Or you could just use half the daily section of your regular calendar or diary. I do that now because I kept forgetting where the notebook was!
You'd be surprised how easy it is to forget how things develop, how you react to new meds etc. You can also use it to make connections that you'd otherwise miss.
How are your family coping with your diagnosis? You say that they're giving you pitying looks! Only you can know what to tell them, and when. So much depends on their ages, experiences with illness etc. SjS is often unpredictable with good times and flares, so that has to be explained too. If you post this issue as a separate discussion point I'm sure you'll get some interesting ideas.
Take care - Chickpea