Recently I have been reviewing chronic fatigue and pain symptoms for somebody I know. Most of the symptoms sound a lot like those of fibromyalgia or chronic fatigue syndrome, but this person also has chronic dry eyes with blurry vision going back years and a history of poor dental health including rapid dental plaque buildup and periodontitis (gum disease) despite what seem to be good efforts at dental care. One possible cause for these problems is Sjögren’s syndrome. This is an autoimmune disorder of unknown cause that in most patients shows up most obviously via symptoms including dry eyes, little saliva output, dry skin, and in some by pain and fatigue symptoms similar to those you see in fibromyalgia, chronic fatigue syndrome, and multiple sclerosis. Many of these symptoms are directly related to immune system attacks on exocrine glands that make components of tears and saliva.
Sjögren’s Syndrome is not a recent discovery. It was named and the symptoms were well-documented in the 1930’s. But medical education continues to lag many decades behind science as many doctors today remain unfamiliar with this common disease.
Sjogren’s is reportedly one of the most common autoimmune conditions in the US but is severely underdiagnosed. Estimates are that it affects possibly as many as 4 million Americans about 1.5% of the population. About 90% of those diagnosed are women, but men can also suffer from it. Researchers suspect that hormonal changes associated with aging may have some involvement in the disorder, but some patients are young and therefore there may be other factors at work.
Sjögren’s Syndrome: A Place To Begin
Probably the most famous Sjogren’s patient is Venus Williams, the American tennis star who dropped out of playing in the 2011 US Open tournament due to the disease’s impact on her health:
Minutes before she was due to play her second-round match at the U.S. Open, Venus Williams withdrew from the tournament due to an autoimmune disease with which she was recently diagnosed.
“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.”
Williams’ announcement has helped raise awareness for Sjogen’s and some medical education programs for doctors have now added the disease to the material they cover. This may help many get a more accurate diagnosis in a reasonable amount of time rather than the 7+ years it is typically for today’s patients to get a diagnosis after they initially reported the symptoms of the disease to their doctors.
More than half of Sjogren’s patients have systemic symptoms going beyond the typical dry eyes, mouth, and skin. These often include what are classic pain, fatigue, weakness, and cognitive impairment symptoms of fibromyalgia, chronic fatigue syndrome, and multiple sclerosis.
Sjögren’s syndrome can co-exist with other medical problems with similar symptoms. One study found that around one out of four or five Sjogren’s patients may also have fibromyalgia:
More than two third of patients with primary Sjögren’s syndrome (SS) report fatigue. Despite its clinical relevance, only a few studies have examined the relationship of fatigue with the presence of an overlapping Fibromyalgia (FM) and other clinical and biological variables. The aim of this study was to assess the relationship between fatigue and SS disease activity and damage, FM, widespread pain, and mood disorders; finally, the possible correlation between fatigue and a panel of cytokines likely to drive the immunopathological process of the disease has been examined. Thirty-five female patients with primary SS were consecutively enrolled; for each patient the Sjögren’s Syndrome Disease Damage Index (SSDDI) and the Sjögren’s Syndrome Disease Activity Index (SSDAI) were calculated. Patients rated pain, fatigue and disease activity using a 100-mm VAS and completed Health Assessment Questionnaire (HAQ), the Zung depression (ZSDS) and anxiety scales (ZSAS). 30/35 patients (85.7%) felt unduly tired and the same percentage of patients suffered with pain in more than one area of the body. 7 patients satisfied ACR criteria for FM, representing 20% of the whole cohort and 23% of SS patients with fatigue. No differences were found in disease duration, SSDDI, SSDAI, ZSDS and ZSAS among SS patient with or without FM. In the whole group, fatigue VAS correlated with HAQ, ZSAS, ZSDS and pain VAS but not with age, disease duration, presence and severity of arthritis, SSDDI, SSDAI, or cytokines. In conclusion, an overlapping FM can contribute to, but does not entirely account for fatigue in Italian patients with primary SS.
Another study highlighted how the number may be closer to half of primary Sjogren’s patients (those who developed it before another autoimmune disorder such as rheumatoid arthritis, systemic lupus erythematosus, scleroderma, etc.) may have fibromyalgia:
The prevalence of fibromyalgia in primary (n = 18) or secondary (n = 20) Sjögren’s syndrome was examined. In all patients with Sjögren’s syndrome as well as in 31 fibromyalgia patients and 20 healthy individuals measurements of pressure pain threshold were done by palpation and dolorimetry. Widespread pain, functional complaints, as well as depression were determined by a questionnaire. The results show a high frequency of fibromyalgia in the group of patients with pSS (44%), 72% of pSS patients reported widespread pain. Only 5% of the sSS patients fulfilled the ACR criteria for fibromyalgia and 40% of this group reported on widespread pain.
Chronic Pain and Fatigue Highly Disruptive To Life
As anybody who knows someone with fibromyalgia, chronic fatigue syndrome, or multiple sclerosis knows, these condition and others like it tend to severely interfere with one’s life due to the chronic pain, fatigue, and often cognitive problems such as attention and memory deficits. Many of these patients end up unable to work to the health effects and they struggle to get any competent medical care because few doctors are skilled at treating these chronic health problems and the causes are poorly understood.
Although Sjogren’s can cause symptoms similar to other chronic pain and fatigue disorders, the mainstream medical community knows little about Sjogren’s symptoms outside of the dry eyes, mouth, and skin problems unless you find a doctor experienced in treating the disease. There are some medications available for these symptoms, particularly those of dry eyes.
There isn’t any known mainstream medical cure for Sjögren’s Syndrome and few treatments that seem to do much of anything aside from alleviating some of the symptoms, particularly those of the dry eyes, mouth, and skin. The alternative medicine community also seems to be struggling to come up with good options to treat it. GLA, omega 3 fish oils, and curcumin seem to be among the few often mentioned options for helping to alleviate suffering from the disease. L-glutamine and probiotics are also often mentioned for helping those with digestive problems including poor nutrient absorption.
Getting a Diagnosis
Unlike fibromyalgia and chronic fatigue syndrome, there are some reasonable blood tests that often show signs of Sjogren’s. The ANA (antinuclear antibodies), Rheumatoid Arthritis Factor, and Erythrocyte Sedimentation Rate tests often show elevations in Sjogren’s patients and also others with autoimmune disorders. A simple Schirmer test can be used to quickly and inexpensively gauge tear production in your eye doctor’s office. More definitive testing involves the specialized blood SS-A (or Ro) and SS-B (or La) antibody tests and salivary gland biopsies. If you suspect Sjogren’s, you should talk with your health care provider about getting most or all of these tests depending upon whether your symptoms include both dry eyes and dry mouth.
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