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[McKorky]

I was just diagnosed with Sjogren's on Tuesday Aug 28. I am 19 years old. After 6 or so years of complaining about joint pain and fatigue. I was sent to a Rheumo Doctor and he did a lot of blood work. The blood work tested positive for the Sjogren antibodies. So I guess that would be the Primary Sjogren's.? I will go back to the Rheumo Doctor at the end of Feb. to be tested again for the antibodies. My doctor was really surprised that it came back positive in the first place so before I start the treatment he wants to be sure. If there is anything that I should know about thus auto immune disease please let me know!  Thanks!

[Joe S.]

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.

[Bucky]

Hi McKorky - welcome!   

It saddens me when young people are diagnosed with Sjogren's.  Although, many of us here feel we've had Sjogren's for a very long time - since our late teens and twenties.  So, in that instance, it's good that this will be treated for you now, instead of years down the road.  We have several members in their teens and 20's.

Is your doctor suggesting any medicines or anything in the time being between now and February? 

Do you have any of the dryness issues with your eyes, mouth, nose, skin and other places that are characteristic of Sjogren's? 

Preservative-free eye drops are soothing to dry, itchy eyes.  It's not unusual for doctors to think it's "allergies", when it is dryness that causes us discomfort.  (Although, some people DO have allergies compounded with dryness of their eyes from Sjogren's.)

If your mouth is dry - diligent visits to the dentist are important.  Lack of saliva can really do a number on your teeth, and quickly.  In fact, it was my dentist office that suggested I be tested for Sjogren's because my mouth was so dry their instruments were sticking to my mouth!  A lot of people like the Biotene products - mouthwash, toothpaste, gum, etc.  Your dentist might even have some samples for you of these products.

Stress is not our friend.  Try and keep the stress level down in your life.  When you are feeling really fatigued, rest up.  Even if you have to find a quiet place for half an hour, it helps.

If there are certain topics you are interested in, if you put those word(s) in the search box to the top right of this page, it will take you to other threads about it.

I hope you find this forum helpful to you on your Sjogren's journey. 

Bucky

P.S.  By the way, are you female or male?  Can't tell by the name.   

[McKorky]

I'm not on any medications for the Sjogrens yet. I have high blood pressure and I'm only taking meds for it. My symptoms are joint and muscle pain, fatigue, and dry eyes. And I'm a female!

[quietdynamics]

Hello Bucky, since you are in Ohio, Here is a link to the Cleveland Clinic. It has information about Sjogrens (SJS), and a link to find Drs. who treat this disease.

Remember when reading posts that SJS is not the same for everyone. It is not "one size fits all"...so just because one person has XYZ symptom(s) does not mean the next person will get them...and symptoms may express themselves a varying levels, appear..then go away...go figure?

While no one wants to have any disease, it is beneficial that you are close to a positive Dx so early so that you can get a handle on this.

While you are waiting for February your Mothers words/lessons can now come back to haunt you...LOL. And empower YOU.
Eat right.
Keep a good sleep routine; you may need more than 8hrs.
Good dental Hygiene ...search SJS Dental
Exercise   Yes, Really!  Start walking to reduce pain.

At 19, you want to party with your friends..just do it within your limits. Your body will let you know. But, you already know this, 

[Nancy60]

Everyone has given you good advice to start from.  the only thing I would add is to start keeping copies of positive bloodwork/labs for youself, you may need them in the future if you switch doctors.  If you call your rheumies office and ask they should send you a copy of the labs he did. 

Keeping a symptom journal may help identify other issues that might seem minor but could be indications of organ involvement that needs to be addressed.

As someone said previously, everyone is different with this disease so just because you read about a sjogren's issue doesnt mean you will get it.

I was 18-19 when I had an opthomologist diagnose me with Sjogren's, but he just told me to use artificial tears and that was it.  I did pretty well and more or less forgot about it until years later when I was having joint pain, rashes, fatigue that a rheumy brought up Sjogren's and I remembered being diagnosed 20+ years before.   I do wonder if the issues I have now would have occured if I had received treatment earlier. 

But just so you know, life with Sjogren's can be manageable, it just depends on how severe it is for you.  I am not that bad off.  I am still working full-time in a demanding job, but I have had to learn to pace myself, say no to things I might have wanted to do at times because I was not feeling well, use artificial tears and always have something to drink near by, but for the most part my life is good.  Just wanted you to know having sjogren's isn't necessarily the end of a good life.  Some people are effected more severely than others.

Best of luck to you and feel free to ask questions.

Nancy

[Piebird]

I agree. Sorry you fit in here. I'm I'm glad you found us.

Ask us lots of questions! Everyone has a different set of issues so there is always someone who can help.

I use preservative free eye drops.

My fatigue is REALLY helped by B12 shots!!!

You can ask your doc to check your level. I dont absorb much from food or pills so I do the shots. I feel so much better when my level is at the high end of normal.

[lynnmarie219]

Hi McKorky and welcome to Sjogrens World!

Glad you found us and the best advice I can offer to you is to learn all you can about sjogrens by reading and asking a lot of questions. Once you gather some of the basics...you will learn how to apply this information to you own life depending on what symptoms are your biggest issues. It takes time though...so be patient with yourself.

The other thing I would recommend is to always keep a list of symptoms and questions that you want to ask/talk to the doctor about. It never fails that I have the list in my head...then I go to the appt and forget half of what I wanted to ask. I also keep a current list of medications that I take with me as well as copies of recent lab work done.

Welcome aboard! Feel free to ask any questions that you many have....someone will always be around to help out!

[mshistory]

Welcome to SjS World!

The end of February!? That seems like a really long time to wait without any medication to treat your symptoms. Is there another rheumatologist from whom you can get a second opinion? I'm SS-A positive, and I've never even had that antibody retested.

Usually, rheumies starts out with Plaquenil and for many, it helps with the joint pain and perhaps the fatigue. It did not help me (I was on it for over a year) and I have other complications so I'm trying Imuran now (for the second time) but your symptoms really should be treated.

I'm so sorry you're having to deal with this at such a young age, although there really isn't an easy age to cope with chronic illness. I have two young children and work part-time as a college instructor, so it will present challenges at every stage in life.

Feel free to ask any questions you may have - this is a wonderful, supportive and knowledgable group 

[EllaBlue]

I just want to take a minute to say WELCOME!  I am fairly new here, and so happy to have found such wonderful support!!
Hope to see you again, and I wish you the best.  Others here have already helped me SO much:)
EllaBlue

[slccom]

Hi, Mccorky! Ditto on sorry/glad you found us. I have had Sjogren's all my life, and didn't have real significant diagnostic symptoms until I hit about 50 when my eyes went really dry. Luckily, we live in a world of true miracles, and we have medications that are helpful in preventing the really crippling effects of it and the related autoimmune diseases that love to come along for the ride.

Please, please, please keep in mind that the people on this board, for the most part, are much more ill than you are likely to ever be. I believe that most people with Sjogren's are never diagnosed because either they can't find someone competent or don't have the "right" blood results. Also because they never get sick enough that even a doctor can tell!

Besides tracking your symptoms, you should also track the medications you take, their doses and how effective they are. Set up a spreadsheet or something, and after you make an entry, e-mail it to yourself (assuming that you keep sent e-mails) in case your hard drive crashes.

Since you are having symptoms now, especially joint pain, I would ask about getting on Plaquinel ASAP. It is really cheap in the generic form. Always tell your dentist that you have Sjogren's. The eye drops you use must not contain benzalkonium chloride as a preservative, because it will damage your cornea. You need to have an ophthalmologist, too. Tell her/him you'll be on plaquinel and you need a baseline visual field test. (Actually, if they don't tell YOU to get a baseline visual field test, thank him/her politely, leave and find someone else.)

Beware of the nocebo effect. This is where people who are given placebos but told to expect certain side effects, and they then develop those side effects. My advice is to take the medication, take it with optimism, and if something that distresses you develops, only then look up the side effects. The human mind is an amazing thing, and the power of suggestion even more so. Even worse, many people are more afraid of the medications than they are the disease. This is very dangerous to your long term health and functioning.

Sjogren's is a real trickster disease. There are many different symptoms, and as far as I can tell, no two people with it have exactly the same symptoms. That said, there is no reason why you can't have another illness as well, including other autoimmune diseases. They do like to travel in packs! And that said, there is no reason why you can't have some other illness that isn't autoimmune. When you go to the doctor in the future, ask ?If I didn't have (autoimmune disease/s), what diagnosis would you consider? How can we rule that out?? When the mind heads down a diagnostic track, it is good to derail it with this type of question.

Welcome, sorry you need us, and we all look forward to answering your questions and your answering ours. Don't forget the Social Hour for some fun!
Sharon