As promised, here is part one of a three-part article written by Dr. Sarah Schafer. These installments are part of a rough draft which, after continued work, would make a great book in my humble opinion. Please feel free to add your thoughts or contributions to the comment section below.
Managing Sjogren's Fatigue
by Sarah Schafer, MD
FATIGUE is a big topic, which I have researched extensively and continuously learn to manage in myself.
Donna V writes: “.....however, no one addresses the extreme amount of fatigue. I too, run out of energy mid afternoon. It does’t matter how little I exert myself during the morning, I often cannot go out to choir rehearsal at 7pm because I cannot force myself to get off my bed or to leave home. I LOVE to sing and even this activity requires more energy that I can muster. I also have significant fibro pain and just holding a hymnal is often more than I can bear. It also hurts my spine to sit in a chair. Family members cook supper and do the dishes because I am too fatigued to even begin a meal, too sore to wash dishes, it’s painful to lift the pans out of the cabinet, stirring food in a bowl is exhausting, etc.”
I too lived with this level of fatigue for years, sometimes so bad I was in bed 16 plus hours a day. No amount of sleep made a dent in it, and all of my careful eating, pacing, etc. did not help that much.
I started getting better a few years ago, although I have a long way to go. Here is my wisdom, based on research and personal experience.
The medical profession does not address fatigue due to lack of awareness (70% have disabling fatigue), and lack of tools, time and incentive to help manage fatigue. Fatigue in Sjogren’s poorly understood, but here are some causes:
- The obvious: disordered sleep/sleep apnea, anemia, untreated celiac disease, terrible diet, morbid obesity, thyroid disease, migraines, medications, chronic pain conditions and other comorbidities (associated conditions).
- There is good evidence that some sort of autonomic nervous system dysfunction (many types, including GI motility, CV, sweating issues) is present in most, if not all of Sjogren’s patients. Doctors have not caught on to this and do not screen for it. They do not know how to treat it. Cardiovascular versions such as POTS (postural tachycardia syndrome) and neurally mediated hypotension are fairly common (no numbers yet) and can cause enormous fatigue, dizziness and lightheadedness. No one screens routinely for these conditions—they have to become severe to be diagnosed, and even then the diagnosis is often missed. CV dysautonomias are often associated with migraine, which is actually a full body experience that creates great fatigue in addition to the headache and other symptoms. Managing CV autonomic dysfunction can help greatly.
- I am convinced that part of the fatigue issue is due to an inflammatory process which affects the whole body; so anything that can be done to decrease this (a big discussion) can help fatigue. I sincerely hope that new pharmacologic research will help in this regard.
- Stress: I hate this topic, because I think stress is highly overrated as a cause for fatigue. The biggest reason I am stressed is because I am so sick. However, I do notice that ongoing serious stress and major loss such as death or divorce can send me into deeper fatigue levels or auto immune flares. Also, being around depleting situations (for me large gatherings/loud noise) and “friends” and family members that drain you is not good.
- Sun: Too much exposure to sun and heat can increase fatigue levels.
- Fitness/conditioning: This is a huge topic, and I will address it in a later section. I view this similar to diet in that exercise needs to be customized, reasonable, and graded, with allowances for a great deal of trial and error. However, it does make you feel better when you find the exercise(s) that help.
- Season: I do better in spring and summer. Also, mornings are my best time. Other folks have other patterns, although most people note more fatigue in the winter, especially with bad weather.
- Once again, I want to note that Sjogren’s fatigue is not studied much and is not well understood. I have read every article on this topic I could find. There are not that many so this was not hard to do. This sorry state of affairs is also true for other types of autoimmune fatigue, which is a frequent debilitating symptom in systemic lupus erythematosis, multiple sclerosis and other autoimmune diseases. I would love to see more research in this area.
Others have commented on fatigue improving with GI symptoms getting better, which makes sense. Not all GI symptoms can be ameliorated by diet but this and other GI care is worth a discussion in the next article segment.
Weather has been mentioned: major storms coming through can affect fatigue. A hot and humid weather combination is simply not good when fatigue is already an issue. This is huge with cardiovascular autonomic dysfunction since heat causes dilation of the blood vessels in the extremities. Blood pools, less goes to your brain, and your heart has to pump harder. Therefore, you feel more wiped out.
In my next installment, I will take parts of this and talk about management and treatment. But as you can see, it is a most complex topic! Do you have feedback to share? What increases or decreases your fatigue?
*Note that the link to information regarding POTS has been updated. You can find part two: Managing Sjogren's Fatigue here, and part three: Uncovering Other Medical Causes of Fatigue here. --Julia*