Hello everypone. I lost my password for this site when I 1st joined but recently found it.
I got diagnosed a couple years ago with primary sjogrens. I am doing somewhat better now--peipheral neuropathy / fibro is healed, and carpal tunnel, along with the synovitis and lung inlamation (bilateral hilar lymphadenopathy). I was supposed to follow up with the pulmonologist but I'm lagging. But I feel ok at least. I'm trying to get back to work or at least school now...a three year gap on my resume is intimidating to explain...
I don't know why I got sjogrens. I'm a guy, and was ~28 when I first developed symptoms. But I guess there is no way to know why we get this. At least its not MS (which is what the original dx was). It was wierd how much more supportive my family members were then...but whatever...
Yeah I had read about sjogrens when researching conditions that cause dry mouth, and thought "there's no way I have that"...and I also thought "how would I even get tested for that?", since my experience with a previous rheumatologist was that she only cared about my joint issues (and didn't seem to care about rashes, migraines, etc). I was sure I would be just sent away and dismissed. I ended up getting diagnosed when I insisted my pcp test me for lupus. I still don't know what caused the peripheral neuropathy & nerve issues...I know sjs can cause this but the rheumatologist said no, not in my case...
Hi Sandman, welcome back. I was diagnosed in Jan of this year with sjogrens. I have had mixed support - some of my family is much more supportive than others. Many of my family members do not know ANYTHING about sjogrens and do not care to know, while others are always asking how I am, etc.
I am sorry to hear that your rheumy thinks your symptoms are not common for sjogrens and wants to dismiss some of them. I guess I am lucky that I have a rheumy who believes me and believes that most of my issues are caused by sjogrens.
I think you will find this forum to be very informative and supportive.
Yes it was once thought that sjogrens was primarily a woman's disease, but not so much any more. You will be able to connect with other men who have it on this website.
Wishing you some relief and more support with your diagnosis and treatment.
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.