I am new here and just wanted to say hello. I was diagnosed with Sjorgrens in aug of 2012 so i am still learning how to deal with it. i also have arthritis & fibromyalgia. most of my pain is in my back from just under the shoulder blades to my spine. I have been reading some of the other comments and am glad to see i am not the only one with some of the symptoms. I am on cymbalta for the pain and its working for me so far. I managed to stop most of the itching and finally accepting the fact that there is yet more foods i cannot eat. I also have a lapband which contributes to my food limitations. the worst for me is the fatigue and the pain. my md put me on ritalin 5mg in the morning to help with the fatigue since i was actually literally falling asleep at my computer at work. my daughter sits behind me and kept throwing paper clips at me to wake up. it has helped but some days 5mg is not enough. i go back on 29th for a followup.
Welcome bd,
You'll find this a good place for information, support and general chat.
Keep us posted on your progress.
Hugs
Elaine
While I am glad that you found us, I do not like it that 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.
Sjogrens: 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. Do not 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 Sjogrens 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 Ss of Sjogrens.
Welcome, you will find this forum to be very informative, friendly, and supportive. I have only been a member since January, but have found it to be so very crucial to me in finding support and encouragement when having difficult days and times related to SJS.
Although I, too, like Joe, am disappointed and upset to hear about so many other folks who have this disease, you will find comfort and information here that is truly invaluable.
I started taking plaquenil in January and am finally seeing some positive results from it. As Joe stated, it is not for everyone and some of the side effects you have to weather through are not pleasant, but I persevered through them and am glad I did. Although I still have many unpleasant issues associated with SJS some are not more manageable than before.
Take care.
Welcome. This has been a very helpful and supportive place for me. Feel free to laugh, to cry, to ask questions, and to share your experiences. Whatever is best for you.
We are taking different paths through this crazy disease, but knowing that there are others who know and understand what we are talking about is a real help.
Welcome to our group, this is a great bunch of people. Sorry you have the sjogrens diagnosis with us but this is a great place to learn and to make friends. CK
Hello and welcome,
We are happy to have you here among friends. This is a place of refuge when no one else understands what you are going through. I have only been here for a short time and already I feel very comfortable. Take care and keep us posted on your progress.
PP
Hi bdnews2 - welcome!
Quote from: bdnews2 on April 26, 2013, 04:09:09 AM
I am new here and just wanted to say hello. I was diagnosed with Sjorgrens in aug of 2012 so i am still learning how to deal with it.
Even those of us who have been dealing with Sjogren's for years - we're STILL learning how to deal with it. Never a dull moment. ;)
If there is a specific topic you are interested in, if you put that word(s) in the search box to the top right of this page it will take you to previous threads about that topic. If you can't find what you're looking for, by all means start your own thread.
Unfortunately, there is no "one size fits all" medical plan for Sjogren's and the people it affects. What works for one person, may or may not work for another. Many times it is through trial and error to see what works for you.
Because of the vast differences of all of us here - you may get many different suggestions - what's important is to check with your doctor(s) before taking any OTC medicines or supplements, as that can interfere with prescribed medicines.
I hope you find this site helpful to you on your Sjogren's journey. The members here literally come from around the world and range in age from very young into their 80's and everywhere in between.
Bucky