Hi from Germany

[MirkeshCat]

Hi there,

I wanna introduce myself. I am male, 35 years old, married and have one little daughter. As the topic says I am from Germany and live there but found very few forums in my language on Sjogren?s.

Since at least 2004 I have been suffering from varying symptoms that over the years got worse. Symptoms were/are mainly: Fatigue, joint pain - especially in the knees, sensivity to sunrays, bad sleep patterns and so on....

I went from doctor to doctor and almost everything was checked - each time without finding anything serious. Finally I met a haematologist this March and he checked my blood intesively and found high levels of ANAs and SS-A (Ro) anti-bodies. Then I spent July in a rheuma-clinic near Munich, Germany where I was finally diagnosed with SS.

This is my short story.

[Cheryl]

Hi Mirkeshcat,
I'm sorry that you have this diagnosis, but I'm glad that you found us.   You can find information and ideas for living with Sjogren's here.  You will also find that many men and women your age are dealing with it.  We look forward to getting to know you.
Cheryl

[Gayle]

Gruss Dich!

Welcome! You will meet many people here who are wonderful, smart, great listeners and you will learn a lot. It is hard it seems for Dr's to figure out what is wrong with us. Glad you finally know. Did they start you on any meds? Good luck and look forward to hearing from you more.

Gayle

[Iwantmylifeback]

Welcome from another Newbie..Sorry you had to look for this site, but hope you will be glad you found it

[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.

If Germany still has Rife machines you may want to try one of those. I have had good experiences with using frequencies.

[MirkeshCat]

Hi,

thank you for the nice replies!

I am only on medication since last week - 5mg of Cortisone in the morning. Actually I have the feeling that it makes me a little less fatigued but that might just be a so called placebo-effect.

[grod003]

Hi all. I also am new to this site and to sjogrens. After about 12 years, I was finally told that I had sjogrens. I had never heard of it and am having problems finding info on it and how to handle all of the problems associated. I am finding I have alot of problems with my hands and was wondering if there are any others with muscle wasting. I am losing the use of my thumbs and soon wont be able to use them at all. Anyway, I'm glad I finally found you so I can learn how to cope with all of this
Chris

[Cheryl]

Hi Chris, and welcome to you, too!  I'm sorry that you are having bad problems with your hands.   Maybe someone else can give you some advice about them. 
Cheryl

[Iwantmylifeback]

I really did not pay attention to mine.  just knew it hurt more to use them and sometimes my thumbs just feel stiff and kinda detached.  If I use them to twist like twisting jar lids off I get really sharp pain and it locks, more the right than left, guess cause I am rt handed.  There is barely more than skin at the base of the thumb.  Doc from Cleveland Clinic noticed it and asked if I had injured it, and then said oh I see you have  Sjs...
I just try to not abuse it.  Got one of those hand held deals that break the seal and then the lid comes off with ease.

[susanep]

Welcome to both of you newcomers. I am sorry you have to have this pain, etc., but you have come to the best place for support, and knowledge.

We are all here for each other in a world of illness that we wouldn't wish on anyone.

susanep

[lynnmarie219]

Welcome to MirkeshCat and Chris!

I hope you both find this site useful and can gather a lot of information from reading and asking questions here. There are many kind people who are around to help out in whatever way they can.

So jump on in as you feel comfortable....and again welcome to the family!

[Meld256]

Welcome to you both, MirkeshCat and Chris 

I'm sorry you've needed to find us, but glad that you have. I think you'll find this a place where friends encourage and support one another, you can find loads of information, and a place where we all understand.

MirkeshCat, I hope that you're able to find ways to manage the pain and discomfort. If you have any questions, please jump in and ask. Someone will be happy to try to help. You will find that we seem to have more and more members that are around your age.

Chris,
I'm sorry I don't have info. specifically about muscle wasting, but you may find something here on the site if you use the "search" box.  Perhaps someone else will respond with some ideas. 
Welcome again to you both.  We're glad to have you here, and hope that you'll enjoy it here as much as I have.

take care,
Melinda