Positive Options for Sjgren's Syndrome

Hunter House Inc., Publishers

Contents

Foreword.....................................................................viiiAcknowledgments..............................................................xIntroduction.................................................................1Chapter 1: What Is Sjgren's Syndrome?.......................................3Sjgren's Syndrome and the Immune SystemSymptomsOther ProblemsSjgren's Syndrome and Lymphoma?Who Gets Sjgren's Syndrome?Preventing Sjgren'sChapter 2: Diagnosing Sjgren's Syndrome.....................................18The Schirmer I TestTests Using DyesMouth ExaminationLip BiopsyBlood TestsOther TestsWhat Happens Next?Chapter 3: Treating Sjgren's Syndrome - Simple Measures.....................25Simple Solutions for a Dry MouthSimple Solutions for Dry EyesSimple Solutions for Aches and PainsSimple Solutions for Skin ProblemsSimple Solutions for Other Problem AreasChapter 4: Treatments for Sjgren's..........................................36More Complex MedicationMedications to Avoid If PossibleSurgeryAcupunctureChapter 5: Supplements.......................................................43Vitamins and MineralsOther SupplementsWhat to Consider when Choosing a SupplementChapter 6: Managing Flare-Ups and Pain.......................................49Managing Flare-UpsManaging PainHelp from Your DoctorPain Clinics and Pain Management ProgramsPain MedicationChapter 7: How to Help Yourself - Lifestyle Issues...........................59FatigueNot Forgetting SexDietDigestive ProblemsSmokingTravelStressChapter 8: Exercise and Physiotherapy........................................76To Rest or Not to Rest?Which Exercise?Don't Overdo ItHow to Get the Best from Your ExerciseHeatDon't Forget to Warm DownChapter 9: Coping With Your Feelings.........................................84GriefReliefAngerDelayed ReactionEmotional Ups and DownsDealing With DepressionDealing With Anger and ResentmentManaging Feelings with Your Partner and FamilyHow to HelpPositive ThinkingHow to Be More PositiveChapter 10: Becoming a Parent................................................96MiscarriageCan the Baby Inherit Sjgren's?PregnancyAfter the Birth and Flare-UpsAdjusting to MotherhoodPostpartum DepressionBaby CareConclusion: The Future.......................................................106Suggested Reading............................................................108Resources....................................................................109OrganizationsWebsitesIndex........................................................................112

Chapter One

Jean Much of the time I feel fine, if a bit less energetic than I used to be. When my Sjgren's is active, I feel vaguely fluey and really tired and I'll often need to take a few hours of complete rest before my energy comes back. My mouth feels hot and dry and I usually drink lots of ice water. My eyes are very sensitive to light, especially sunlight, and I have to wear sunglasses in all sorts of embarrassing places, such as subway stations, church, and concerts! I also have very dry skin and tend to get rashes.

So what is Sjgren's syndrome (pronounced `Sher-gren' or `Showgren')? With its hallmark symptoms of dry eyes and a dry mouth, that are often accompanied by fatigue and generalized aching, this condition has only been recognized relatively recently and certainly isn't yet a household word.

A syndrome is a group of related symptoms or signs that occur together to characterize a particular condition. Sjgren's syndrome (sometimes called SJS for short) was described by the Polish doctor Johann Mikulicz-Radecki in 1898 and was at first called Mikulicz syndrome. However, this name was later applied to other conditions that cause dryness and is therefore no longer used specifically to describe this disease, and so the name of the syndrome was changed to Sjgren's syndrome (SJS) to acknowledge the work of Dr. Henrik Sjgren, a Swedish ophthalmologist who also described the set of symptoms specific to Sjgren's.

In 1933 he noticed that there was a connection in his patients between severely dry eyes, dry mouth, and arthritis. Later on, it was recognized that patients could have the dry eyes and mouth without the arthritis. Sjgren described this syndrome in his doctoral thesis.

There are two kinds of Sjgren's syndrome that have been defined:

1. Primary Sjgren's syndrome occurs on its own with no other associated disease.

2. Secondary Sjgren's syndrome is associated with another autoimmune disease, like rheumatoid arthritis, lupus, or primary biliary cirrhosis.

Sjgren's Syndrome and the Immune System

The fact that Sjgren's is an autoimmune disease may raise fears that you have a weak immune system and are therefore more prone to disease, but with Sjgren's it appears that the immune system is, in fact, overactive.

Almost fifty years ago Sjgren's was defined as a "chronic autoimmune rheumatic disease characterized by the sicca complex (decreased tears and saliva), resulting in keratoconjunctivitis sicca (dry eyes) and xerostomia (dry mouth)." Of course, as many Sjgren's patients know all too well, the symptoms can be much more wide ranging than that and the illness can attack just about any part of the body. It is very common for patients to suffer from fatigue and aching joints, for example, as well as dry airways and skin, and the disorder can cause problems as diverse as numbness, skin rashes, and an underactive thyroid gland. Inflammation is a common problem, and it can affect the joints, muscles, nerves, kidneys, thyroid gland, and indeed just about any area of the body.

In a Sjgren's patient, the body's immune system gets mixed up and starts attacking the body's own healthy cells as if they were invaders, such as germs. Since the body attacks itself, this type of condition is called an autoimmune syndrome, and although this mix-up happens in all autoimmune diseases, in Sjgren's, the body's primary target is the body's moisture-producing glands. The white cells, or lymphocytes, attack and invade the glands, and this gradually reduces the glands' ability to produce fluids-tears and saliva-hence the dry eyes and mouth that are the primary symptoms of Sjgren's.

During this autoimmune process, the immune system produces antibodies, exactly as if the body was fighting off a virus. These are called autoantibodies, and since their presence can be detected through blood tests, testing for them can help doctors to diagnose whether or not a patient is suffering from Sjgren's.

Sjgren's is not by any means the only autoimmune disease. There are a whole host of them. Some, like lupus and Sjgren's, may affect many organs of the body; while others, like thyroid disease or pernicious anemia, may single out just one organ. All are related in some way and sometimes display similar symptoms, which can complicate the doctor's job of diagnosis. You may find that you are, or have been, tested for some of the following:

* Lupus (systemic lupus erythematosus, or SLE)

* Scleroderma

* Rheumatoid arthritis

* Polymyositis

* Dermatomyositis

* Thyroid disease

* Autoimmune liver disease

Patients with...