They are testing me for Sj?grens but they seem pretty sure its Sj?grens. Im only 26 and I have not been feeling right since I was 19. Been very tired and hurting all over. In march my glands became swollen and they have not gone down since. So now they think its Sj?grens. It jsut feels so unfair for me to get it now. I mean if I get it now, by the time im 40 ill probably be bed ridden.
Tigerlily,
I'm glad you found this site. If you are dxed with Sjogren's, you will find a lot of information and friendship here. There are other members your age. This syndrome affects each of us differently, so there is no way to know how it would progress in your body. Most of us are not bedridden, even after many years with this disorder. Keep your chin up. Best wishes!
Cheryl
Hi Tigerlily,
Let me welcome you to the SJS World and family! Please look through the scads of topics by using the search engine located on the upper left hand side of this page. If you don't find what you're looking for, don't be shy and ask away as there is usually someone about that just might be able to help.
I'm sorry that you're not feeling well, but I'm glad to see that your doctors are on top of things; there are too many members here that it took ten or more years before they were tested for SJS.
Please remember that I'm not in the medical field or anything like it (this is just my humble opinion), but if you have SJS, there is just no way to tell how it might affect you. You'll also find that there are some members that still work (part-time or full-time), and are still doing okay in their 40's, 50's and their 60's.
I also understand that you're 26, and I know that you're probably scared, but you'll find several other 20 & 30 somethings here, as well as some teenagers, and a mother or two of children under 10 (and some members a bit over 40, like me).
Again, welcome and I hope that you'll find the board informative and useful.
Take care of yourself and I hope that I'll be able to chat with you soon -
Patze
Hi Tigerlily :)
Welcome to Sjogren's world.
There's nothing fair about Sjogren's or arthritis or cancer or any of the diseases that can strike any of us down at any age. Once we're stuck with it - we just have to get on with it though.
It's usually quite a shock to the system when we are first dxd and most of us go through a sort of mourning process as we grieve for the health that we had. There is life after Sjogren's though and as has already been said - it's a very individual disease and no one can predicdt how it will be. Some people have flares with reasonably normal spells in between. Some people do feel pretty sick. Some people have long periods of remission and some people don't get much more than dry eyes and a dry mouth uncomfortable as they are. Most of those people don't come in here though because they probably don't feel they need to.
It can happen at any age. When the literature says that most people are dxd in middle age - it doesn't actually mean that is when it developed - many of us took up to 20 years for a diagnoses and so didn't have any treatment.
I hope you find the forum helpful.
Take care - Scottie :)
Tigerlily, Welcome. I am disturbed by all of the young people that are having this and other auto immune (AI) diseases devastate their lives. If you are interested in alternative therapies you can contact me. Some of us are putting what we are taking in our signatures to help others you you may look there for treatments.
I truely think something is going on to make young people get so many AI diseases,, water,, air, toxins in the food, Mcdonalds, burger king,, who knows,,, but I bet someone knows,,, have they also tested you for any type of Neuropathy?
I agree with Navydad. There may be something in the environment that is triggering this in us.
Thanks guys. Its all just new to me. My main problem is my salivary glands on both sides of the face are really swollen. I have to in for more tests in two weeks time but the first tests seem to confirm that it is sj?grens. It does feel good to talk to others with it..