New to Sjorgren's and feeling a little lost.....

[momof2]

Hi. I was diagnosed a few weeks ago with sjorgren's but I suspect I have had it for a while. I went to the Dr because of joint pain and fatigue. I didn't even notice the dry eyes or mouth. But I am soooooo very tired all of the time. I never wake up feeling refreshed or like I have had enough sleep. I also hurt all the time. :-( It's hard to explain to someone that does not feel this way. I sometimes feel like my husband doesn't believe me... or that I'm using this as an excuse. I just feel like I am out here all alone.
I guess I am just looking for someone who may understand how I am feeling.

[Daisy1234]

Hi Momof2:

Sorry to hear that you have Sjogren's but you are very welcome here.   One thing about Sjs is certainly the fatigue factor, it can be debillitating at times, my legs and body often feel like dead weight and that's even right after I get up in the morning. 

You will find that you will have lots of great company and also loads of great information here about your illness (and mine as I have Sjs as well).   Hope you are able to get the appropriate medical treatment that will help minimize the symptoms of this disease as there is sadly no cure. 

Sending you healing wishes,
Daisy

[tomsmom]

We all understand how you feel.  I'm sorry you're sick.  It's really hard to adjust to all of this.  Has your doctor started you on any medications?  
If he's receptive, try to get your husband to look through the posts on this board so that he can see what many of us go through.  That way he'll see it's normal for you to be feeling like this.  Also google something called "the spoon theory".  It's a really good description of how the autoimmune process can affect and interfere with life. It's not something you can always push through.  In the search box type in  
"How do you describe our fatigue"  click on it and it will take you to a discussion thread that was very interesting.  
I've got 2 little ones and I struggle daily trying to keep up with them.  It's definitely challenging, but you'll find a lot of support, and wonderful shoulders to cry and vent on here.
Welcome!

[Katybarstool]

Hi Momof2

It's a hard condition to get your head round isn't it? However, most people on here finally do - with lots of help and support from others.

I've been diagnosed around 3 years, and I must say, it has been a bit of a roller coaster. My diagnosis did eventually lead me to this site, which was the light at the end of the tunnel. I hope it will be for you too.

Looking forward to getting to know you.

Kathyx

[momof2]

Thank you everyone for the warm welcome. I hope to be able to find support and understanding here.

As far as my husband goes... He is one of those "Just pull your self up by your boot straps" kind of guys. I think it's going to take him a while to come around. But it is what it is....

I have two kids. A boy who is 12 and a girl who is 6. I've homeschooled both until this year my son has gone to public school. I still homeschool my daughter.

My Dr has perscribed 800mg of Ibrophin and flexural at night. I have an appointment on the 10th. I'm not sure where to go from there. I'm not sure what I need.... or where to turn.

[CAT1962]

Hello, momof2,

I have the debilitating fatigue, and muscle/joint aches. I don't have horrible dry mouth stuff. Mostly at night, or when I talk too much. My eyes are somewhat dry, mostly sticky-like. (Trust me. I can cry.) The last 2 days have been bearable, but now I need a root canal. This pain is awful, so maybe it's "out doing" the achy pains!   It's SO hard when no one really seems to care about this garbage we go through. Even my husband and kids are kind of rolling their eyes at me now. (I know I have ahd mine for awhile...I have had thinning hair for about 6 yrs, fatigue, achiness, joint pain, edema, burning or cold feet and hands...)

CAT

[Joe S.]

Welcome to the site momof2. The spoon theory may help you and your family understand a little more about what is going on. You can find it at this link:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

There is a lot of information that can be found on this forum. tips about meds, supplements and management techniques. It is also a good support group.

[Bucky]

momof2,

Welcome to Sjogren's World.  Grasping the diagnose of Sjogren's is a "process" you go through - much like the grieving process.  Denial, Anger, Depression, Bargaining and Acceptance.

Are you seeing a Rheumatologist?  They are usually the ones who diagnose Sjogren's.

If you search through this site you will find tons of information.  At the top of this page there are Links and Books you can browse through that might be helpful to you.  You will find out that you have to be your own health advocate.  If you are lucky to find a doctor that will team up with you to find the right medicines that help control your Sjogren's and help you function day-to-day, that is a huge plus.

Sjogren's World is a worldwide forum with both men and women who are affected by Sjogren's.  Some have had it for years and years, others are just newly diagnosed.  So, when you come here - believe us, we "get it".   

Bucky

[momof2]

My sjs was diagnosed by a Rheumatologist. She suggested a med called. Hydroxychloroquine... but it can have a damaging affect to your eyes. I have declined it for now. I am a photographer and would perfer not to take a risk with my eyes. Also she said if I take it I will have to have my eyes tested at least twice a year.

So she perscribed the iborophin and made an appointment for me in 6 months.... @@. I'm going to my primary Dr on the 10th. I'm praying she will have more options for me.

[DragonflyC]

Momof2, most people do very well on plaquenil (aka hydroxychloroquine).  Dr. Wallace, an expert in rheumatology, describes people's fear of eye issues from plaquenil as his "pet peeve" (The Lupus Book by Daniel Wallace, page 216).  The dose used for people with AI issues is rather low and incredibly unlikely to cause the problems that can happen at higher doses when it's used as an anti-malarial. 

[momof2]

Dragonfly I will look into plaquenil so more. I'm just not sure about this whole eye issue thing. I guess I am just feeling a little lerry of any meds.

[Joe S.]

While Eye issues are unlikely, they happened to me. I am using other methods.

[shortstuff]

Welcome, Momof2.  I understand how you feel.  I was dx in August.  I have very dry eyes, mouth and sinuses.  I also get the fatigue and find it hard to get up each day.  I'm pretty sure my whole family just thinks I'm lazy and it's all I can do to get my little ones to preschool in the morning.  My hubby is like yours, he's been busting his butt for almost 20 years and goes to work unless he's dying, literally! So it's hard for him to understand.  Sometimes when I explain this disease to people who haven't heard of it (that's most of them!) it sounds so ridiculous.  I guess you don't know how miserable your life would be without spit and tears until you don't have them.  Fatigue is also hard to understand when you have boundless energy too, I suppose.

I'm on hydroxychloroquine and have my fears but my ophthalmologist said that the vision problems are very rare and the increase if you are high risk: have been on it a very long time and take a very high dose.  At this point he says based on weight that the 400mg per day puts me in the high risk category but it should take a long time if it was to cause problems.  I'm planning to take it for a year to see if it helps in any way and then reevaluate.  Plenty of folks on here have been taking this medication for a long time with no problems and my docs say there is really no reason to suspect bad side effects....hard to believe when you're the one in how many that has SjS, right?

Welcome, and hope that you find plenty of info and support here. It's helped me through my rough days and pity parties!

[SueAnn]

momof2,

Welcome! I am glad you found this forum.  You will find some great information here as well as support and a place to vent.  I also went to the doctor for joint pain and didn't realize I had other things wrong with me as well.  I hope you reconsider taking Plaquenil, I have found that it is worth going to the eye doctor for this medication.  Plaquenil slows the progression of Sjogrens as well as helps with the joint pain and fatigue.  I feel that Plaquenil is the reason I am able to continue working and have a half way normal life. 
I also joined the Sjogrens Syndrome Foundation and have found the information extremely helpful.

Sue Ann

[DragonflyC]

Joe, your eye issue was incredibly scary and terrible, but people tend to be worried about the macular changes, which are irreversible.  Those changes are related to dosage, and they only occur when someone takes high doses of plaquenil over an extended period of time.  Most of us top out at 400 mg/day, which is pretty low.  Other problems can occur, but they are rare and go away once the patient stops taking the medication.  

Momof2, plaquenil is really interesting because it was originally a natural medication, quinine, which was discovered in cincona (a plant) bark. It's now made in a lab, but that just means that the chemicals are more consistently controlled than they are in nature.

If you'd like to try alternative treatments before starting a pharmaceutical medication, you might want to look at some of Joe S.'s older posts.  He is an amazing expert on natural treatments; I've learned a great deal from him.  Personally, I take fish oil supplements (about 3600 mg/day), a good multi-vitamin, and vitamin D, and I try to follow an anti-inflammatory diet.  I like a blend of pharmaceutical and natural treatments.