What you can do when diagnosed with Sjogren's Syndrome

Shout: "Hurrah, finally some one believes me, I am not going crazy, I am not a hypocondriac, I have Sjogren's Syndrome." 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. Here are some handy hints from people with Sjogren's Syndrome:

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.

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.

Some dietary suggestions.

Venus William's about Sjogren's

"I'm really disappointed to have to withdraw from this year's U.S. Open," Williams said in a statement. "I have recently been diagnosed with Sjögren's syndrome, an autoimmune disease which is an ongoing medical condition that affects my energy level and causes fatigue and joint pain...
I enjoyed playing my first match here and wish I could continue, but right now I am unable to. I am thankful I finally have a diagnosis and am now focused on getting better and returning to the court soon." Venus Williams in USA Today. Dated 9/3/2011

Difficult diagnosis in Sjogren's syndrome

This disease, Sjögren's syndrome, affects over three million Americans and is a common autoimmune disorder but how many people have heard of it?
Few people know how to pronounce it, let alone have heard of it and doctors rarely consider it when patients describe their symptoms. Apparently medical students do not learn much about Sjögren's and the symptoms are wide and vary from patient to patient. All of this leads to an average six years delay before diagnosis.

This is a dilemma as early diagnosis is important especially as people with Sjögren's have a higher risk of developing lymphoma. If they knew they had Sjogren's they could be alerted to the early warning signs of lymphoma cancer.

Blood tests that may be required for diagnosis

•ANA (Anti-Nuclear Antibody)
70% of Sjögren’s patients have a positive ANA.
•RF (Rheumatoid Factor)
•SS-A (or Ro) and SS-B (or La)
These are the antibodies for Sjögren's.
•ESR (Erythrocyte Sedimentation Rate)
Measures inflammation.

Diagnosis of Sjogren's Syndrome

A rheumatologist diagnosed my SS using a Schirmer's Test. He placed a small, thin paper under my lower eyelid to check the dryness of the eyes. It was very simple and quick and done in his office and scored to tell the amount of dryness in the eye.

Results of a Schirmer's test:

1. Normal which is 15 mm
2. Mild which is 14-9 mm
3. Moderate which is 8-4 mm
4. Severe which is 4 mm

It was this result of 5mm and my symptoms that confirmed the syndrome as no single test is specific in diagnosing SS. It was followed with a blood test to show antibodies.

The rheumatologist said I had primary Sjogren's.

My Day of Diagnosis with Sjogren's Syndrome

I remember clearly the day I was diagnosed with Sjogren's Syndrome - where I was, what the room was like and how relieved I was to finally have a diagnosis. My husband said "I have never seen anyone so pleased to be told they have an illness." My mother said "Why do all the things you get have such weird names?"
I was very pleased because I had finally found out I was not going crazy and there really was something that caused all these weird symptoms:

• eyes that felt gritty
• a burning tongue
• hoarseness
• constant sore throat
• loss of taste and hearing
• many dental cavities
• painful intercourse
• itchy skin
• constipation
• light-sensitive eyes
• fatigue
• joint pain and stiffness
• muscle pain and nerve pain
• increased sensitivity to cold.
  
  I was pleased because I'd had these symptoms for many years with no relief. As far as strange sounding diseases I knew that many diseases had strange names and I was soon to learn that this one was named after a Swedish doctor named Henrik Sjögren.

Do you remember the day you were diagnosed with Sjogren's Syndrome and how you felt? Please tell us about it in the comments below.