Hi Sherehuberrn, sorry your feeling so ill. I was diagnosed a few years ago and in my experience the first year was the hardest. It took me the first year to just get back on my feet after my initial flare. Then I think it took me another year to learn how to live with this and find my new normal. The plaquenil took about 6 months to really "kick" in and do its job. I still get sore joints from time to time, and all of my symptoms get worse when I go through periods of stress. My most bothersome symptoms at this time are some new rashes that seem to be spreading, and my hair is falling out again.

Overall to feel my best I really guard my sleep and watch what I eat. I go to bed, lights out by 9 each night and I have eliminated wheat, dairy refined sugar, and processed foods from my diet. When I have pain I also restrict night shade vegetables. I still eat meat but keep it to a minimum and avoid red meat as much as possible. Instead I eat chicken, fish as well as more beans and lentils. Basically I stick to a clean eating program.

None of this is a magic pill, but it does enable me to function. I work full time, and during the school year I manage to have some social life, but I have learned to say "no" and gradually friends and family have become more accepting of that. During the week everyone knows they cant call me later than 7:30 or 8 and calls are kept short. I head for bed by eight and read or watch a little TV. I've found that a strict routine works best, If I don't get any down time I don't sleep well, and then I get more symptoms. I also go regularly for acupuncture. It helps greatly.

Hope something in my "rambling" will help. And the beauty of this board is that you know you are not alone...take care

Hi Sherehuberrn,

Right now, I am only on Plaquenil specifically for SS, but I am on a lot of other meds for some other chronic diseases.

I echo Leyna regarding a sleep routine-this has helped me tremendously, especially with Sjogren's , but in other areas of my life too.

I do think it is normal to have an occasional setback...when this happens to me, I take it as a message from my body, telling me to slow down, change something - did I stay out too late, did I eat junk food, I don't drink alcohol, but for those that do, did you have more than usual, were you around someone with a cold?

So, for me the set back is my body telling me to take a step back and re-evaluate, and make a healthy change...sometimes it is trial and error.

Physical therapy is one of the best things I ever did! It helped me in so many ways. I had a great Physical Therapist, and after being bed ridden for about a year, she really taught me to be aware of how important each small movement the body makes is. It boosted my self esteem a great deal to be up, moving about and encouraged.

I hope you have a similar experience.

Overall, it sounds like you are doing everything you can to manage you SS, and are determined to get strong and resume a life that includes going back to work. This is something to be very proud of.

Please don't let a small set back that you really have no control over take away from all your accomplishments!

All the best, and Keep us posted on how PT goes...I'd love to hear if you have a good experience like I did,

:) LuLu