I am new to all of this. I was diagnosed in Nov of 2011. I am wondering if anyone can recommend books that would have good information about this condition. I have dry mouth and eyes (I have punctal plugs), fatigue, GI issues, skin conditions, unexplained bruising, hair loss and I am noticing that I am just so thirsty all of the time. I am due to see my rheumatologist in early April, so I plan to discuss the thirst issue with him then. Thanks!
Contact the sjogren's society. They will send you literature and what books they recommend. I have the latest book and I am looking for it in my book case and for some reason am not seeing it. If I remember correctly it is written by Dr Daniel Wallace a rheumotologist in LA
The Following User Says Thank You to Mel52 For This Useful Post: Knot (02-29-2012)
Mel 52& Agenda,
Thanks for the info. I went on line and had a look at the book. It looks as though it has a lot of info, and may be really good reference material. I did order it through our local book store as I live in Canada and don't want to bother with shipping etc. I will contact the Foundation though and see what they can send me. It is really great to see what other people have to say about this syndrome/disease. I live in a smaller community and no one has ever heard of this other than my optometrist and a few other people that would have reason to hear of it.
Do you have any "tips" that would help someone who is just learning to cope with this? Do you ever have problems with insomnia? Sometimes it is my biggest problem. When you add it to consuming fatigue its crippling. I think right now my biggest worry is the next school year. I am half time this year but due to staffing issues I will be full time next year and I am very afraid that I won't be able to handle it. I work in special ed, so it is a very rewarding but busy job and I love it. I have heard of people who have to give up their jobs and last May I was so sick that I was on sick leave for 5 weeks. I couldn't even get out of bed and was too tired to even read a book! How do you find the right balance?Fortunately I have good support at work . I have a good Rheumy and I also see a Holistic practitioner and I do feel that I am on the right path, but any advise is welcome. Thanks so much.....Knot
Hi knot, it is very much trial and error at the early stages, I am not diagnoised long with secondary sjogrens. For me I had to learn to pace myself, when I was having a good day I would tend to over do things in order to catch up and end up exhausted. Now even on a really good day I stop a couple of times and rest, it seems to help. I always keep a bottle of water with me and sip away through the day. I use over the counter eye drops and if I need pain relief I take it early, I used to try and wait it out, and would end up in agony. When you get the book you will have more info than you need, it is very detailed.
I still don't actually have a diagnosis other than sicca syndrome. I am seeing an ENT dr in a few weeks to hopefully have a lip biopsy. If your eyes get really dry as mine do, ask your dr for restatsis. I use it twice daily along with otc eye drops. I get dehydrated very easily resulting in severe body cramping. So fluids are important. Give in to the flairs. If I push it I get so weak and shaky.
I also have reynauds so I keep my hands warm. If I run them under warm water, they are ok.
Everyday it is a different symptom for me and am going for all kinds of testing. My biggest search is why I have severe osteoporosis.
The Sjogren's Foundation is a great place. The volunteers there are so kind. Good luck