share: Living for over 30 years with Sjogren's Syndrome
Hello All,
I have primary Sjogren's with organ involvement, most particular kidneys--renal tubular acidosis and medullar tissue disease. I was diagnosed while living overseas when I was 23 Years old--I was the youngest diagnosed Sjogren's patient at the time and an anomaly because I had recently given birth. I have had positive titers every year for the ensuing 30 and have experienced that Sjogren's, like many other auto-immune disorders, does have periods of remission and active state.
Understanding how to deal with pain when my disease is active and knowing how to keep my disease inactive has been a life-long challenge. I'd like to start today by giving a few pieces of insight on my learning:
1. When I know that I am getting sick, I am better prepared to deal with the pain. For instance. I have therefore learned not to ignore the following:
Intense muscle tingling or "heat" when tired
Immediate and overwheling fatigue particularly a couple of hours after I wake up
Dramatic change in appetite; for me it is usually getting very hungry but it can also be the complete loss of appetite.
My immediate response now to any of these symptoms is:
Increase my sleep to 10 hours a night; go to bed, read, do breathing exercises; you will fall asleep
Increase the amount of outside activity; usually walking or bike ridiing; gentle but persistent and consistent exercise reprograms the muscle tissue and helps you sleep which helps you heal
Eliminate all alcohol except for one glass of red wine a day
Immediately eliminate all foods from my diet that tend to increase inflammation.
My goal is to nip my body's auto-iimmune response in the bud. I've learned the key to this is to reduce the inflammatory response which is cyclical and gets worse as the inflammation gets worse. The inflammation is also responsible for most, although not all, of the pain that I have from Sjogren's.
I hope this first post helps. I'll keep contributing and please feel free to ask any questions you want. If it relates to Sjogren's I've generally been through it and am living pretty healthy and happy and looking forward to aging gracefully and having lots of fun with my GKids for years to come.
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment3 Comments
Hi Jean in Oregon,
April 11, 2011 - 6:17amThank you for sharing your story. I'm sure you will be able to provide comfort and information through your experience to another member. Welcome to the community! We're glad you're here.
This Comment
Jean, what medications or medical treatments have you had good luck with? Thx. J
September 22, 2011 - 9:44pmI actually don't use any medications for my Sjogrens. I did for some years but found that I did not get enough relief to make it worth taking the meds. I am very proactive with my health and especially in relation to my kidneys. My highest recommendation is an anti-inflammatory diet. Dr. Weil has a great one in his book, but essentially it is the Mediterranean Diet. I get exercise every day, but avoid getting exhausted.
September 28, 2011 - 3:12pm