Sjogrens World Forums

I had my first doctors appointment with a rhumentologist today.  Though the tests done weeks ago confirmed Sjogrens this was the first time I had a chance to really ask the questions on my mind.  Still there is so much that is wait and see and they did more tests today to rule out everything else and so I am still in limbo mode.  Putting a name to whats been nagging me for years has really helped.  I have to say though reading through allot of the posts made me cry.  For so long I considered myself a wimp, crazy or just imagining things.  It wasn't until my right cheek swelled up to the size of a chipmunk that the doctors finally started paying attention and then it was just to shove antibiotics at me for months.  Finally I begged they look at different options. I had read up on what they told me was parotitis and sjogrens along with several other autoimmune disease kept popping up.  After researching for awhile I asked the ENT my fourth doctor to please test me for autoimmune diseases including sjogrens.  He was a younger doctor and said that was a great course of action and had all the tests done. Low and behold my research had paid off.  Now I know my constant fatigue, dry eyes and dry mouth is not just my "allergies acting up again" I do have a few questions that maybe some that know what to expect can help me with.

I am about to turn 28 and my husband and I are looking at starting a family.  I hear there is risks with sjogrens for the heart of the baby.  What should I expect if I do become pregnant? Will they run other tests or just do more exams to check on the progress?

Also my hands and feet have been killing me, the joints so sore that I some days I can barely type. I work in an office and in my spare time write and paint, so I use my hands allot.  Are there any good ways to reduce this besides constantly taking pain meds?   

Exhaustion is also a major problem constantly for me. I am trying to eat better and am determined to try to get out and move around as much as possible.  Are there good exercises that people recommend that are less stressful/exhausting but still effective?

Thanks for any of your thoughts and if there are already some posts regarding any of these point me in the right direction as I haven't had a chance to read through allot of them yet!

G'day Becky and welcome.  Exercises is a good idea.  Talk to your doctor and see what he recommends.  The hard part for me is sticking to a exercise schedule.  It was recommended to me to try a Wii Fit.  I did and I love it.  It has a large variety of exercises.  Some of them are like games.  Others you get a personnel cyber trainer, to help you along.  I still have times where I go off schedule, but I still come back.  Welcome again.

Seeker

Welcome Becky G

Isn't it wonderful when your symptoms are validated, and you're not just considered to be loopy? Well done you on doing your research and persuading the doctor to test you. It takes some courage to do that.

I can't answer your questions about pregnancy, but some of our members will probably pop by and give you that info.

Hugs
Kathyx

Hi Becky,

I'm proud of you for taking a proactive role in your medical care!  Imagine how many more years till a doctor decided to test for autoimmune disease...if ever!

The pregnancy issue is important.  I think you should research it like you did to find a diagnosis.  There are genetic things to consider before you get pregnant, but mainly that you know you have Sjogren's and you get an OB that knows about Sjogren's during pregnancy.

I'm sorry to say the fatigue is something many of us struggle with and kind of have to make adjustments for.  You just have to plan more rest for yourself than you used to. 

I have the terrible foot and hand pain too.  I take warm/hot baths to ease the pain in my feet and do a lot of Carpal Tunnel stretches for my hands...this helps a bit.  Also I try never to miss a dose of Plaquenil.  The literature says it won't make a difference because it has to build in your system and takes a long time to wear off, but if I miss a dose my pain level goes up for a couple days.

Best to you, my dear!
Janna

Hi Becky G  :)

Welcome to Sjogren's world. Well done doing your own research and getting someone to listen to you!!

I'm glad you've found the forum. It's friendly and supportive.

I hope you find it useful.

Take care - Scottie  :)

Hi Becky and welcome to Sjogrens World!


I'm glad that you found us and also glad to know that you have a name for what has been going on within your body...not that I want anyone to be sick...but it does help to validate what you have been feeling and going through....and at least now you know what you are dealing with and can confront it head on!

Also want to congratulate you on doing the research ahead of time and getting a doctor to back you up and do the tests....we have to be our own self advocates many times...and this is exactly what you did!

As far as getting pregnant...I think the most importing thing is to insure that your OB has some experience with autoimmune and possible high risk pregnancies, There is a chance of having some heart problems with the baby...but there are many people here who have successfully had healthy children even with the sjogrens diagnosis. Maybe you can type in the word pregnancy in the search button on top of this page and get some more posts about this subject!

Welcome to our family!

 

Hey Becky,

So glad you have already been greeted well.  And great advise from our wonderful sjoggie family.

Please make yourself at home and enjoy lots of comfort and encouragements.

You have done very well knowing to be your own advocate is very important in our sjoggie journeys.

Blessings, kimbo

Hi Becky,

Let me also welcome you to the SJS World and Family!  Please do look around, as you'll find a lot of information during a search, or by asking. 

You've gotten a lot of good information and there's not much I can add.

Again, welcome and I hope to chat with you soon!

Take care -

Patze

Hi Becky,


Bucky

Hi and welcome. I know I'm late jumping in here. Just wanted to share w/ you that I recently (nearly 7months ago) had a happy healthy baby boy. The most important thing is finding an ob who is familiar w/ SJS. There are risks involved but a good ob will monitor you closely. I saw my ob twice a month from the start instead of the normal once a month. I also went for an ultrasound once a month. Feel free to message me w/ questions or leave them on here. I'm not on often due to the fact that I have 2 small children and my SJS has been in remission since getting pregnant last year. An added bonus some women experince w/ pregnancy.

Yeeeee Haw, Lacey!!

Congratulations and God's Blessings!

Janna