PART 3: Managing Sjogren’s Fatigue in Sjogren’s
by Sarah Schafer, MD
Uncovering Other Medical Causes of Fatigue
Sjogren’s in and of itself causes significant fatigue in most patients. Some people experience profound fatigue on a daily basis. Unfortunately, many doctors are not up to date on this information, or on Sjogren’s in general. My rheumatologist told me early on that despite classic Sjogren’s symptoms, I must have CFIDS (Chronic Fatigue Syndrome), because Sjogren’s does not cause severe fatigue. He has since changed his tune.
That being said, it is important to uncover other causes of fatigue, since many of them are treatable. The following is a list of common medical issues associated with Sjogren’s that may cause fatigue. This is not a complete list, but it is a good start.
- Thyroid disease. 15% of Sjogren’s patients have autoimmune thyroid disease, usually Hashimoto’s Thyroiditis.
- Screen routinely, and consider re-testing if you develop increased fatigue, cold intolerance, hair loss or other symptoms of hypothyroidism. Grave’s disease less frequently occurs, and usually causes hyperthyroid symptoms.
- Celiac disease is thought to affect about 10% of Sjogren’s patients. Fatigue is one of the many symptoms. Celiac may not present with classic GI symptoms. A TTG antibody test is highly sensitive and specific. You must be eating gluten for the test to work. If positive, a small bowel biopsy is usually obtained for confirmation. More on non-Celiac gluten sensitivity in a later section.
- Anemia: There are many types of anemia, so it needs to be evaluated in order to treat it properly.
- Severe obesity: If you are carrying around an extra 100 or 200 pounds, this will certainly add to fatigue. Note, mild overweight may not be a bad thing. It reduces osteoporosis, and the risk of fractures, among other things. Be kind to yourself! With the help of caring professionals, figure out the best way to address this problem without creating great stress to your body.
- Recurrent or persistent infections, such as sinusitis, cellulitis, frequent colds, etc. These take a toll on the body and overall health.
- Organ system involvement: This occurs in 20-40% of primary Sjogren’s patients. Examples: interstitial lung disease, autoimmune hepatitis, primary biliary cirrhosis, vasculitis, others. These need specialty care.
- Chronic pain.This is a huge, complex and important issue, not in the scope of this discussion.
- Sleep disorders are extremely common. It is important to rule out sleep apnea, especially if you have daytime sleepiness. If your internist is not well versed in evaluating sleep disorders, see a sleep specialist.
- Fibromyalgia (FM) and irritable bowel syndrome can occur, but these are over diagnosed in Sjogren’s. Many Sjogren’s patients are initially diagnosed with FM, irritable bowel, or both. Sjogren’s itself causes muscle pain, fatigue and bowel dysmotility. Recent studies estimate 5-10% of Sjogren’s patients meet the clinical criteria for FM. Irritable bowel syndrome is highly prevalent, but symptoms may be due to small fiber neuropathy or the autonomic dysfunction often seen in Sjogren’s.
- Alcohol abuse and other addictions. If you have an unhealthy substance use pattern, get help!
- Depression. This is a can of worms. Many experience depression, ranging from mild to severe. Major depression can cause fatigue and a sense of profound physical heaviness. This needs specialty evaluation and management. However, do not let your doctors tell you that all of your fatigue is due to depression, even if part of it is.
- Menopausal hormone fluctuations. Like depression, this is a complicated topic. Once again, even if this a contributor, it is unlikely to be your main source of fatigue.
- Other autoimmune diseases. Polyautoimmunity is very common with Sjogren’s. Sjogren’s may co-exist with lupus, rheumatoid arthritis, systemic sclerosis (scleroderma), sarcoidosis, psoriasis, amyloidosis, and others. These autoimmune diseases have their own treatments, some of which may help Sjogren’s symptoms also. I agree with the Sjogren's Syndrome Foundation and Sjogren’s experts: Get rid of the term “secondary Sjogren’s”, and just call all the diseases by name.
- MCS -- Multiple chemical sensitivity. This condition is fairly common in Sjogren’s patients, although rarely recognized by western doctors. Dryness and reduced surface immunity of the respiratory tract, eyes, sinuses, etc. create a poor barrier to toxins. Reactions to fragrances (including chemicals lingering in common laundry products), smoke, volatile organic compounds (paint etc.) can make you feel sick and fatigued. Sensitivity reactions often increase over time. Chemical sensitivity may occur when you don’t notice an odor, or even if you like the scent. Often the reaction is delayed: You may notice hours after a crowed social event that you feel horrible. Some of this may be due to environmental exposure.
- Migraines: Several small studies have shown that 50-88% of Sjogren’s patients get migraines. Most significant headaches are migraines. 85% of migraines are the common type. Common migraines do not produce the aura or visual symptoms that are characteristic of classic migraines, the other 15%. Both types of migraine cause fatigue, before, during and after the headache. Migraines are a whole body phenomenon, not just bad headaches. They can last for hours or even days. Getting adequate treatment can greatly reduce suffering.
- Postural Orthostatic Tachycardia (POTS) and other cardiovascular autonomic nervous system dysfunction. I mentioned these in Part One. Poor automatic regulation of the heart rate and blood pressure is quite common. The actual number of affected patients is unclear, since no one has ever done a study to look at the prevalence of this in Sjogren’s. A large survey in the UK showed all dysautonomias lumped together affect 55% of primary Sjogren’s patients. This result was based on self-reported symptoms. Many were cardiovascular autonomic symptoms, but better studies need to be done. If you get dizzy or light headed when standing quickly, get tested. It takes a knowledgeable doctor (Ask: Do you know how to diagnose POTS?) and more time than allowed in a typical medical appointment to diagnose this.
Why is this important? There are specific treatments for POTS and many related conditions. Good management can greatly improve quality of life.
I will post links to all three sections of this series on my sidebar, which can be seen when viewing Reasonably Well on non-mobile versions of this blog.