Sjogren's is a strange illness. Sometimes I believe it has as many symptoms as there are people. Not really but you feel that way sometimes. One can experience neurological problems, joint, tendon and muscle problems. Vision problems, dryness everywhere, skin problems. It is a connective tissue rhuematic disease and can attack any and all areas of the body.

Not easy to live with but you do get more used to the symptoms and don't panic as much as in the beginning. And you learn by trial and error what works best to make you feel a little better.

Good luck in your quest.

thank you for the reply, it is a strange disease and what is really hard, there is no one to talk to and when you do you feel like people don't understand how you can feel so different from day to day. It seems like the flare ups are once a week now instead of every so often. There doesn't seem to be any reason for the flare up and it can be different everytime someone on the body. Thanks for a listening ear. Blessings

No, most people won't be very understanding, that is why it is good to have support groups like this. I have learned alot just from reading and usually people are very responsive here when you have questions or concerns.

One of the problems is that we don't look sick and people who are not going through it just don't get it.

If you don't mind sending me your e-mail address I will send you something called the spoon theory that was written by a woman with Lupus. If you would rather not that is okay. But, it explains in an interesting manner what we go through on a daily basis and how she made her friend understand.

does anyone here take plaquenil or vitamin b shots. ?? anything other than restasis?? it is so hard to know what works.?? you could spend the whole day medicating yourself!!

I have started taking Plaquenil but have not been on it long enough to know anything different except for ALOT of gas. They tell me about 8 wks you should know if it helps or not. I find aleve helps with the flare ups.Right now I just use moisture drops, I am thinking about getting restasis, does it work well enough to bother?

Hi Flowerlady,
I was diagnosed with Sjogren's in 2007 and every hour of the day iss different for me. I can feel well one moment and very tired the next. I have been on plaquenil and restasis since my diagnosis. My corneas had pits and the restasis made my eyes a lot better so I highly recommend it.

I just got diagnosed with Hypersensitivity vasculitis so I don't know if some of my symptoms are from that or the Sjogrens. My muscles and joints all hurt and the sun light is unbearable for me even with sunglasses on. My teeth are going to hell and no one that I am close with wants to know anything about it except one aunt. And yes it is very hard that we look normal but feel like hell but I am hopeful that stays this way meaning who want to look as bad as the feel.

There is a great book about sjogrens that I got from the library that I suggest you read. I think I added the name to the recommendations a long time ago. Not even the doctor responds to my complaints so I found it very hard when I was first diagnosed to know what was causing what.

Well flowerlady58, I'm so sorry to have to welcome you here on this wonderful site, sorry because that means of course, that you have been diagnosed with SJS, but so glad you found this site, as I too am glad to have found it. I have learned so much about sjs right here. My Dr taught me nothing about it, actually told me to look up all the information myself. Family was difficult at first, but yes, no one in the family or friends want to know if you are in pain, I think my 14 year old son is the only one who understands a little. I've learned to not tell anyone when I have a flair up, cause it does me no good. If someone questions me, I just tell them I'm not feeling well. And as for the depression, yeah it's a major part of this disease for me. I keep asking myself "why don't I want to do anything??? " Why don't I care when we are taking a trip? Why this and why that... I finally began to realize it was the depression... I go to RH today, so hopefully she will give me meds for depression. I have been on plaquenil for 4 months, I was told it takes a good 6 months to get into your system to help, I have noticed over that time of the flare ups coming less, and lasting a shorter time, thankfully!! Good luck to ya, and hope to see ya here again

Thank you all for the warm welcome. I am an artist and a mini album scrapbooker so when I feel a little depressed or have a flare up I can at least sit and do something that I love. I WAS a mover and a goer so it has been hard to not go and do as I use to,but I am learning. My hubby is very understanding and for that I am thankful.I have been on an anti-depressant for years because I have A.D.D and helps me stay focused. I think that has helped me from getting depressed by this disease and I tell myself Hey your not dying.. What book are you referring to

The Sjgrens Syndrome Handbook (2005)
edited by Daniel J. Wallace, MD
I found this on the Sjogren's foundation web site. This is the one I had my public library get for me and it is great.

I know it is very hard getting answers about this disease but it is also do to the experts not knowing a lot about it. In many ways it is very similar to Lupus. I hope the book helps. I should probably read it again since it has been years since I read it.

thank you so much, I think I saw this but didn't want to purchase it because sometimes it is alot of blah blah blah so I will contact my library and have them get it for me :)
I am very lucky it was my RA Dr. that said I had it. My first appt. with him after the blood tests confirmed it is in Sept. he wanted me to be on the med for at least 8wks or more.

Your welcome. The book is just what I needed in the beginning and at least your getting informed information from a doctor. These groups are great in that people get support and a place to vent but some info that is passed along can be wrong. I research what I want to learn about but each of us have different needs. Keep in touch.

A new SSF handbook is in the works (copy review stage from what I read on another list this morning.) The old one is good but the new one should be better. In the meantime, if you have'nt done it already, consider joining the Sjogren's Syndrome Foundation at
www.sjogrens.org or by calling 1-800-475-6473

Once you join, you will get notifications about upcoming regional meetings or their annual national meeting. You can also access articles about various Sjogren's issues at their website or look up old issues of the monthly magazine, Moisture Seekers.

Welcome.

thanks I will go there and join .

Hey all you SS I have a great tool for you to use when you have a flare up or depressed because ya can't do anything at the moment you want to do. I started doing Zentangles about 2 yrs ago. It is very meditative and relaxing. It is doodling with patterns on patterns. The website www.zentangle.com I believe I am in a Flicker group of zentangle. you don't have to be an artist and there is no right or wrong to it. You don't have to order the kit I never have, paper and micro pens is all you really need to start. I Love it and I do it everynight to relax and then I have an art piece. Let me know if you tried or not it is worth looking into it.

I was diagnosed with Sjogren's in 2006, though symptoms presented years before. In any case, I have come to realize that each day is a new "adventure" - you just never know how you're going to feel day by day, or even hour by hour.

My advice is to continue to make your plans and enjoy your day-to-day life, irregardless of SS's unpredictibility. I say this because there have been times I was afraid to make plans for vacations and such because I just didn't know how I might feel at that point.

And, this is a terrific group, by the way. I wish I had found it much sooner!