New and lots of questions!!

[Cindy]

My name is Cindy. Im 28 years old and Im lost and frustrated. My symptoms are really confusing please bear with me. My main symptom is joint pain not related to RA have seen 3 different rheumatologist and cant decide what wrong with me. Other than than I have a lot of fatigue, mild dry eyes, and dry mouth. One doctor suggested Sjogrens and Im getting blood work done, results will be back next week. I have a lot of questions since my dry eyes don't cause me a lot of discomfort. My questions is how did everything started for you? Did it started with mild dry eyes and progress to chronic? The doctor that suggested this told me that it takes years to fully develop enough symptoms to show on the blood. My biggest trouble with my mouth is a tingling sensation on the tonge and sometimes when I swallow I feel something in the back of my throat. Is this how everything starts? My joint pain has been with me for years, symptoms come and go. I'm completely lost and don't know what to do. Can you tell me more about the onset of your symptoms. Next week seems far away for me,

CINDY

[eye2dry]

Hi Cindy.

I did not start with joint pains till summer of 2010. I had mildly red and dry eyes starting back in approx 2003. Over time they got to be MORE dry, then burning and gritty. Then the dry mouth started, always felt thirsty. About 2007 wore my contact lenses for the last time.

I was initially told it was allergies, then occular rosacea. None of the meds they gave me worked for my eyes. So, I just quit going to the eye dr or family dr for it.

Summer of 2010 my right hip hurt, was so very tired ....eyes so bad. Saw my family dr. he did preliminary labs and said I had some kind of arthritis. Then saw a rheumatologist and got diagnosed with sjogrens, then 6 months later got another diagnosis of rheumatoid arthritis .

When or if you get told you have sjogrens they may suggest Plaquenil right away, then you may have methotrexate added too later on down the road. When really having a bad time of it...your rheumy may give you prednisone. Sounds like your eyes aren't too bad right now.

Now listen closely.....you may not have sjogrens, and even if your told you do..you may never get as bad as some will, you could just have  mild symptoms with it. I Have not had sjogrens as long as others on this forum , others here will answer you with their experiences...everyone seems to be different.

let us know what your drs have to say.

eye2dry

[Meld256]

Hi Cindy,

Welcome to Sjogren's World.   

Many of us (including myself) can really understand you feeling lost and frustrated!  There are so many reasons for some of our symptoms, which of course can make it difficult to diagnose. 

I hope that when the blood tests come back, the doc will have more information for you.  I also hope they take ALL your concerns and symptoms into consideration. They should listen to you and take your concerns seriously.

My symptoms seemed to come on all at once, or over a few months' period. I had a little joint pain, but my eyes were the worst. They stung, and burned and hurt. I thought it was because of extra hours at work on a computer.

I do want to encourage you that things can certainly become better. If you need treatment, it's available and can make life so much more manageble.  And feel free to come here anytime, because we understand the confusion, frustration and everything else.  It can be an emotional roller-coaster ride.

Feel free to search around the boards; there are scads of discussions that may help you.
Again, welcome.  We look forward to hearing more from you. 
Melinda

[Cindy]

Thank you so much for your feedback. To be honest I so scared cant stop crying I lost the meaning of life. The more I read the more depressed I get. I really admired each of you because you have the strenght to keep going, Im not sure if I can. Like some of the young ones I feel so bad right now that I dont see my self in 20 years. I have 2 kids 9 and 1 and all I can think of is that they deserve better than a sick mom that will get worst and worst over time. I called my rheumatologist yesterday to check on the blood results they said probably by the end of next week. I have beem tested for ana and ra factor several times each time they come negative. Im not sure about the tests that are specific for sjogrens since this is all new to me.

[Madison Granny]

I think we were all in the same frame of mind you are now in when we were told we had SJS.  I know I was.  I couldn't figure out how to go on with life with dry eyes and dry everything else.  And the pain--that's the hardest to get straight in your mind.  Somehow for your children's sake you have got to work through all of this and be there for them.  My son is 34 years old but I do have a 9 years old granddaughter that I thought I couldn't be there for anymore but have worked through all my grief and realize that I can still be there for her.  Just not in the same way.  I've had to learn to do what I can and say no to what I don't have the energy to do. 

[Meld256]

Cindy,

As eye2dry said, you may or may not have Sjogren's but if you do...it's not an absolute that you will get much worse over time.

Some people go along for a very long time with mild symptoms. If you are put on the right medications, they can really help.
I know this is tough to think about at your age, and with young children. Whatever your illness, it doesn't mean you cannot care for your children or be a good mother.  We keep going because we must.  I don't think any of us are "heroes" of any kind.  I think for most of us when we are diagnosed, we grieve, we feel sorry for ourselves somewhat and then we realize we must go on the best we can.  And life can be different, but still very good!

If you are very depressed, please let your doctor know how you're feeling. If at any time you are feeling suicidal, if in the US call the National Suicide Prevention Hotline 1-800-273-8255. 

Hang in there, and keep posting with us, ok?  If reading more makes you feel worse, perhaps you should wait and get more info. from the doctor.  I know it's hard to do, but please take a deep breath and try to not let the emotions get the best of you before you know what the issue may be.

Take care,
Melinda

[Joe S.]

Welcome Cindy. I hope that this general information helps you.

While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.

With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.

[Patze]

Welcome from me too Cindy!

And I sure hope that you find this board as wonderful and welcoming as I have all these years.


Patze

[quilt4fun]

Hi Cindy,

       I feel that my symptoms started in my 20's.  But doctors just said  I had muscle strain-or the beginnings of arthritis---I was told to take tylenol.
     Now, at 63, as I look back, I think that was the start of SJS.  My dry eyes came in my 40's.  Other symptoms came about 9 years ago.  My diagnosis was made in 2010.
    So, enjoy those kids, rest when you can.   Next week will be here quicker than you think.   I , too, went through the depression/frustration with the diagnosis.  But plaquenil has helped.  Being able to share on this forum has helped.
   Take care.

[A66eyroad]

First of all, welcome to this forum!

Mine started with intense headaches that began in college, they would come about once every month or two and last three or four days. At about age 35 I started getting ulcers in my mouth and nose, and after age 40 I started feeling that I had an eyelash or something in my eye all the time. I never really knew my eyes were dry until I had the Schirmer's test done and the doctor stopped it after just a few minutes because he thought it looked like he was torturing me.

I then often felt I had the flu. This went on for many, many years until I read about Sjogren's in the Merck Manual of Nursing in the library one day.

I was diagnosed just over a year ago at age 56.

I think that everyone telling you that there's nothing wrong with you and to "power through the pain" is very bad for one's health. Over many years it teaches you to ignore illness which can only result in worse illness from neglect.