What you can do when just diagnosed?
"Hurrah, finally some one believes me, I am not going crazy, I am not a hypochondriac, I have Sjogren's Syndrome." This was me when I was first diagnosed.
Yes, diagnosis is difficult and it is just the first step. The next step is realizing that SS is usually not life threatening but it is a chronic condition that needs on going attention.
Just as we get a handle on it the symptoms can change, flare ups occur and new symptoms arrive. We must constantly re evaluate our health to get the best quality of life.
Living well with Sjogren's is an acquired skill and a lot of what happens is not in our control but some things, like looking after ourselves with a healthy diet, are. It takes a while to learn the basics about Sjogren's unless you have a good clinic or doctor who has given you lots of information.
If you are like me I was given a diagnosis and a prescription for plaquenil and some suggestions of dry eye and mouth products... no information, nothing written down, no brochure. It has taken me years to work out what works for me and my symptoms and what to do to help reduce the pain, dryness, fatigue, etc. Good books and helpful people with SS themselves can help you understand faster.
Here are some suggestions that can help when you are newly diagnosed with Sjogren's Syndrome:
Get a good relationship with a G.P. and a rheumatologist who will help you maintain a reasonable quality of life.
A healthy diet and a healthy lifestyle may help manage your symptoms.
You need to be actively involved in your own care to find the best ways to relieve your symptoms. Smoking, poor diet, alcohol and certain medicines may aggrevate your condition.
Educate yourself about Sjogren's Syndrome:
Read 'A Body Out of Balance. Understanding and Treating Sjogren's Syndrome' by Ruth Fremes, M.A. & Nancy Carteron, M.D.FACR or any other books about Sjogren's Syndrome or Autoimmune disorders.
Read the stories of women and men who have SS
Ask questions or share at our active facebook page. There are thousands of other people here who have Sjogrens Syndrome and who come to the page every day.
Join our email list to receive the Sjogren's Syndrome Info Newsletter once a month. It includes personal stories, latest news about Sjogren's and tips to help you cope with this disease.
Connect to others who have SS. Many countries have Sjogren's Syndrome support groups. Here is a list of groups. You can add a group by going to the "Contact us" page.
