New To Group

Hi Everybody,

It's such a relief to find a group of fellow Sjogren's sufferers. I was officially diagnosed with Sjogren's on May 20, at the age of 66. Frankly, I'd had periods of being fatigued since I was 30 but doctors couldn't figure out what was going on. Now Sjogren's has hit me full force.

I had several questions, if you have time. Does anybody know a good Sjogren's savvy rheumatologist in the Greater Boston area? I have a rheumatologist now but she doesn't seem that familiar with Sjogren's and didn't even offer me a range of medications, she just prescribed Plaquenil and told me to come back in 8 weeks. I'd really welcome any recommendations this group might have.

The second thing I am really having a hard time with is accepting this new "syndrome." Suddenly I have to curtail all the activities I love. I can never predict when the fatigue will hit. I am trying very hard to maintain a positive outlook, but I have to admit there are times when I get very dark and feel that my whole life has changed. Have other people experienced this? I feel so alone.

Thanks for listening and I'm so glad I found this community!

I feel this way often I am 35 will be 36 Saturday and got diagnosed at 31 I haven’t worked in 3 yrs my life is nothing like it use to be and as much as that sucks I can assure you that you are not alone. I have a total of 6 autoimmune diseases at this point one that has sent me into liver failure so it is a very hard daily struggle but being part of this group and reading other people’s stories helps me mentally a lot. Also your rheumatologist is on the right track I think plaquinil is the starting point for almost all sjogren’s patients since it is proven to me the most helpful, I was allergic to it which is my luck lol but know many people it has helped a great deal. I wish you the best of luck and welcome to the group

I think everyone can feel overwhelmed when they have a diagnosis, and when fatigue or joint problems etc. stop you from doing what you love... you're certainly not alone in that. I think for me, I have to give myself a stern talking to, and remind myself that there's always someone worse off then myself, to put it into perspective. I only have dry eyes and dry mouth, plus some joint pains, this restricts me less than the slipped disc I have in my neck, and I have just had surgery for Eagles Syndrome, which hopefully will improve some symptoms I get. But I've not been able to go out cycling, which I love, and am facing the fact that I'm not likely to be able to... I was wallowing in self-pity, but have just found out a relative- 13 years old, and a very talented runner- has a heart condition and may well not be able to run again. That made me feel ashamed of myself! I am blessed that I can still enjoy walking and doing voluntary work.

This is a good place to vent, as everyone understands, whereas sometimes family or friends don't. It's good that you are keeping a positive attitude.

Hi Fern! Welcome to the group!

I have two autoimmune diagnoses at this point. When I was first diagnosed it took a while to really wrap my head around things, and I was very scared, as I didn't know what the future would bring. I was 36 years old, and my younger child was still a baby.

It's been 8 years since diagnosis. I'm not going to say that everything is perfect, but. . . . My medications are helping. But more importantly, I know that I can manage. I have realized that going back to work full time is not a good option, but I have found other jobs, and combine them to make enough money to supplement my husband's income. I am active, although not always in the ways that I really want to be. And I make sure to allow myself to rest.

I started out on plaquenil, and was on it for a number of years. It was the only DMARD that was an option as my son was still nursing. What I really liked about it was that it helped with my overwhelming fatigue. It didn't make it go away, but it made it better.

It's a tough place to be where you are right now. Give yourself time to adjust and find your new normal.

I’m new also, and feel fortunate my symptoms are not as severe as many. I think the fatigue really slipped up on me, I have glaucoma and one of my eye prescriptions causes my blood pressure to drop, so I assumed for the last couple of years that the fatigue problem was, at least, understood. But when my pressure was normal and I was struggling to overcome the fatigue I finally mentioned it to my primary care doctor and asked if it could be the Sjögren’s. (Diagnosed a year ago). I have reactions to many meds, so I’m just starting the process with my rheumatologist of finding something that works.

Hi….regardless of age, Sjogren's can be very overwhelming at times. I think getting used to our new norms are one of the hardest parts. It does seem to go through phases of hitting hard then plateauing for awhile. SS requires us to pay more attention to ourselves, what we are eating, what stresses us out and even what the weather is at times. Please give yourself time. Its a lot to absorb and there are lots of emotions that come with that. This group was a huge help for me in getting through all of it.

On the subject of meds, make sure you have a doc that hears you and responds. That's so important….being in a city you may have more options for Docs though. If it helps any, my rheumy put me on Plaquenil right away also, then moved forward with more tests, etc as needed. I have been working with him for a little while now and feel like I am in excellent hands. I have other issues also. He helped put together the team of docs that I work with and I couldn't be happier. Please be aware that Plaquenil takes a few months to build up in your system so don't expect results right away. It has made a huge difference for me but patience was hard to come by some days.

Sending you good thoughts and gentle hugs.