Hi, I am new- diagnosed with sicca syndrome in August. My major problems started last Jan. I am a teacher and over Christmas break, last year, I started feeling extremely fatigued and my stomach problem-constipation became severe. This led me to fire 2 gastros and by April I had inconclusive blood work for colitis, hyperthyroidism, celiac and a + ANA with no antibodies. By July, I saw a rhummy doctor and diagnosed me with sicca. That summer, I developed mild joint pain in my feet and hands. I preferred to lay in bed, so fatigued, researched all diseases until I was depressed. My two boys (age 13 & 10) ruled the house. I piled clean laundry up in front of the tv, thinking someone would eventually do it if it interferred with watching tv. I missed many ballgames, my gluten free diet was difficult to follow, I wanted to spend time swimming and soaking up the sun like every summer, but I was afraid my fatigue would get worse. Finally August rolled around. I was started on restasis (had dry eyes, inflammation and excessive thirst since my last son was born) and plaquenil. I was forced to get out of bed and go back to work. Something helped. I began to feel better until I had an upper GI in October. Then I got a sinus infection. Then everything happened: dry eyes, throat, extreme and painful constipation alternated with fatigue and joint pain came back in November. I also found out that my celiac biopsy came back negative. What??? I am totally confused and not sure what is right for me yet.
Christmas break has been good for me. I feel better. I try to keep my chin up, but some days are tough. I feel like I have no control over anything. I am afraid of dying, not seeing my children grow up and getting one of the ugly step sister diseases that tags along with sicca.
Winnie
[/pre]
Welcome, Winnie!
It certainly sounds like you've had a rough 2011. I'm happy to hear that your time away from school has been good. You'll see that we have lots of teachers on this board! I don't know whether the incidence of SJS is higher in teachers or if you teachers are just smart enough to join this board in greater numbers than the rest of us! ;) :D
Have you seen a rheumatologist? What kind of doc is rx'ing you with plaquenil? Is the plaquenil helping?
Plaquenil gave me my life back! I love that medicine! Hopefully you'll get the same results with it as I have. It took about 4-6 months to notice any difference, though, and a year for it to have it's full effect. I've been on it about a year and a half and I have more days that I'm well than not, which is great and quite a switch from the way I was just two years ago.
I hope you'll take full advantage of this board! The search engine at the top (go to the main page before using it, though, or you'll just search in the particular post you're already reading! :o ) is a great place to start.
I know you'll find this group of people very warm and welcoming. Feel free to ask any question you might have! This is a great place to vent without jugdement, cry without annoying, and scream without offending anyone. We all get it! Best of all, it's a great place to offer your own help to others.
Here's hoping your 2012 will be a whole lot better and brighter!
Welcome.
Hi Winnie - welcome to the forum. :)
We do tend to have quite a lot of teachers and nurses on the forum. Both these professions have provided help, instruction and great patience with their students and patients. It is our hope that this forum will now provide all these things to each one of them as they embark on this new road in their life called Sjogren's.
As A66eyroad mentioned, the search box is a wonderful resource if you are looking for information on specific topics - eyes, dryness, fatigue, etc.
We also have a Social Board where we discuss anything non-Sjogren's related - a place for us to unwind and be silly, share humor, complain about the weather, etc.
There is no "cure" for Sjogren's Syndrome - but, there are things you can do to help you cope with this disease. You will find a new "normal" along the way - it might take some trial and error with different medicines, etc. but you will find what works for you.
I hope you find this site helpful to you. If you have any questions, comments, etc. - feel free to ask.
Bucky
Hi Winnie,
Welcome to this wonderful forum. Like A66ey said, find a rheumatologist if you dont already have one. Continue the gluten free diet as well as illiminate inflammatory foods ( you can type that in the search box or google it ) and add fish oil capsules to your diet also. These changes along with the plaquinel have helped me so much, as well as the people on tbis forum. Your not alone. 2012 will be better.
Winnie,
Welcome! It's good to hear that your break from work has helped you feel better. (As a retired teacher, I can sympathize.) I hope that the rest gives you momentum as you return to the classroom.
It is unlikely that you will die from Sjogren's or its stepsister disorders. However, it will alter your lifestyle, as you have already seen. Try to take one day at a time, so that you won't feel so overwhelmed. Plan to be around for a looooooooong time - not only to raise your kids, but to enjoy theirs, as well.
May the new year bring you renewed strength!
Cheryl
Welcome to the forum. You can ask any question you need to and someone will come up with an answer. Plaquenil is a good place to start even though it takes a while to kick in.
Thanks for all of your support. I feel better already!! A66eyroad - Yes I have a rheumatologist. I have two of them. They work as a team. One is a woman and she faithfully calls me back if I call her. She is very kind. The other one is the head of the rheumatologist department. He is very knowledgeable and makes the final decisions. I can't get him to laugh at my jokes yet. He is very serious. I feel blessed to have them both.
Happy New Year, everyone!!
Winnie
Welcome, Winnie!
I'm so sorry that you are dealing with these problems. The lack of control that comes with AI disease is definitely one of the most difficult aspects to deal with (sometimes it's even more frustrating than the symptoms).
With time, you will figure out what works for you (regardless of blood test results) and you'll adjust to your new normal. I don't think it's ever easy, but it does get easier.
This forum has been a wonderful resource and support for me, and I hope that you have a similar experience here.
Hi Winnie,
Let me also welcome you to the SJS World and family! I'm sorry to have to meet you this way, but I'm sure glad that you've found us!
I started off as having a SICCA diagnoses too, and the rheumy just drove me insane (don't ask why I stuck with him (he reminds me of yours, he's all business)). As the symptoms increased and started to have problems in other areas, he flipped the diagnosis to SJS (still sero negative).
I too still work full-time and there are lots of days when I just want to turn around and go back home as the pain/exhaustion just gets awful. And then there are the times where you just can't do it, and when that happens, just give yourself a hug and remember that there is usually someone about if you need to post.
Hang in there and I'll keep my fingers crossed that you finally get diagnosed soon.
Take care of yourself -
Patze