Sjögren’s Fatigue – an Autoimmune Conundrum!

My friend Sarah Schafer, a Sjögren’s patient and an MD, wrote a message on the Sjögrens List Serve that I thought should reach a wider audience. Her thoughts on autoimmune fatigue are valuable and her personal experience with fatigue echo the experiences of so many Sjögren’s warriors!  I also have fatigue and mostly give up social activities in the evening so that I can work most of the day (not a quality-of-life choice I like). So I think I will look more closely at these tips from Sarah…

Sjögren’s fatigue – and all autoimmune fatigue – is a clinical conundrum.  No one really knows the cause, although there is some interesting research being done by a neuroscientist in Alabama who may shed some light on the underlying cause soon.

Fatigue is unrelated to blood tests  (e.g.- sed rate, SS-A) etc, or even severe organ system involvement. The study I posted about recently  (article titled, “Fatigue in Sjögren’s: A Paradoxical Response. Decreased pro-inflammatory cytokine levels tied to higher levels of fatigue”, by researcher Wan-Fai Ng from the UK) yesterday showed a surprising inverse correlation with fatigue and some inflammatory chemical levels in the blood. This is  the opposite of what you would expect, which goes to show, we really don’t know. Fatigue is a prominent symptom in Sjögrens (70% disabling) and other autoimmune diseases.

Fatigue is my worst symptom. It is what most keeps me from having a better quality of life, despite many other serious symptoms.  

What can help Sjögren’s Fatigue

Treat every medical issue that is a known contributor to fatigue:  

1. Medical problems (not necessarily directly due to Sjögren’s) — such as anemia, thyroid disease, celiac.  You should be screened for all of these, if you have not been.

2.   Cardiovascular dysautonomias — especially POTS. Causes terrible fatigue, and there are treatments for this. I recently posted a description of this condition. 

3.  Medication issues — I was practically in a coma and never adapted to Neurontin, Lyrica and so on for neuropathic pain. Everyone is different.

4. Depression — I think much of Sjogren’s depression is due to feeling lousy and not being able to live a normal life. However, major depression needs to be treated.

5. Substance use — take an honest look at alcohol and drug intake.   Are you treating your body well? 

6.  Sleep disorders — including awakening due to dryness (a big one for Sjogren’s patients). Many possible disorders, some quite treatable.

7.  Migraines — many Sjögren’s patients  have these, sometimes undiagnosed.  Treatment helps a lot.

New Sjogren’s Guidelines Recommendations:

These are painstakingly reviewed by Sjögren’s experts.  If you have not read them, do! Available at, link is on home page.

Most important recommendation —   EXERCISE!  (More on this below.)

Plaquenil helps many, although studies are inadequate to prove this either way.  The studies are too small and too short. It takes months to kick in, and up to 2 years to get full benefit.  There are no large studies to look at this long term.  Most Sjögren’s experts agree it helps many patients. If your rheum is not up to date, show him/ her the guidelines. 

Lifestyle:  my comments

1. Diet — many patients focus on diet, and go through all sorts of gyrations. It is one of the few things we can control. Unless you are celiac  or gluten sensitive  (a significant minority of Sjögren’s patients), then the main thing is Michael Pollen’s advice: Eat Real Food. In other words, anything processed, packaged, chemical-ized etc. not good for you. Sugar and processed carbs bad for your health, and make you feel bad when you eat them. There is hidden sugar in most commercial breads, sauces, etc. 60 % of American diet is processed food (food-like substances). I find that I do best eating small amounts on a regular basis, with protein mixed in for most meals, and lots and lots of produce. If my gut is off, I cook my veggies and even my fruits.

2. Yoga or Qigong — Something gentle like restorative yoga can be helpful. I have hyper-mobile joints, and yoga has not worked out for me.  However, I have a medical Qigong practice that does help with my overall wellbeing and dryness. I tried a number of practices before I found one that worked for me. 

3. Planned rest —  My fatigue is severe enough that I require a nap/ meditation break in the early afternoons. My body does not negotiate this. My overall function and QOL is much better with this. I would like to be well enough to be functional all day, but this has not happened. Others do well with shorter breaks, or resting after work.

4.  Exercise —  This is a tough sell  but the # 1 recommendation. If you are not exercising, you need to figure out something. It needs to be customized (eg, hurts too much to walk- bike or get in pool), graded- start small and supported.  There is little support to help people with serious illness get exercise. It seems counterintuitive, and people start out, overdo, feel lousy and stop.     

I swim daily (after my nap) and it is an amazing help for both pain and fatigue. It buys me my evening function. I learned that I have to be vigorous with some of my laps to get the most benefit, but it took me a long time to build up to it.  

There are so many benefits to exercise, I could go on and on. We are at increased risk for cardiovascular disease and osteoporosis. Exercise is an essential part of managing these risks. Exercise is the # 1 thing you can do to prevent Alzheimers.  

 I could go on…. But will spare you.

 Sarah Schafer

I always receive such great value in what Sarah writes because I know she has assessed information with the mind of a doctor and the heart of a patient. She also is able to communicate to each audience with truth and authority— other doctors listen to her deeply because she can speak their language, and patients listen to her deeply because she translates medical terminology and research clearly while using her patient’s lens. Thank you Sarah for all the work you do advocating for us Sjögren’s patients and educating doctors on the disease!

If you have any tips that help your fatigue, place them in the Comments section and I will post them for others. Janet

Shame on My Dirty Mouth! Yep, #ThisIsSjögrens!

I spend a lot of time trying to learn best practices for caring for my Sjögrens so that I can live well today and prevent as many medical issues as I can in the future. In fact, I would say that I’m very well-educated in product options, tips and medications. This doesn’t mean that I always practice perfect self-care discipline, but I certainly know what I should be doing.

Oral healthcare has not been an area where I have been lax! I use my Sonicare toothbrush, xylitol toothpaste and mouthwash, prescription flouride toothpaste (and leave it on), and I use MI paste (calcium phosphate creme). I take Evoxac. I see my dentist three times per year and I brush after meals. And of course, I have xylitol mints throughout the day.

I have had one cavity the past twenty years…until now. I was horrified when my new dentist said:

“You have fourteen cavities that we need to fill, and the sooner the better!”

Continue reading “Shame on My Dirty Mouth! Yep, #ThisIsSjögrens!”

Tips to Move Through Autoimmune Stages

This is the final post to recreate my keynote speech delivered at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle.

One of the most difficult challenges to face when living with an autoimmune disease is knowing that you can’t necessarily perform at the peak of your potential. This thought is not only a major blow just after diagnosis (and part of the initial grieving process), but continues to rear it’s head as your disease level changes over time .

This was the key challenge that inspired me to create the Autoimmune Grief and Life Stages and design a program to help me adjust in a healthy manner. I knew that if I wanted to work (and live) at the highest level of my capabilities, I needed to know the parameters of my capabilities. These parameters can change without much notice (depending on my disease level, emotional stage, or the required commitment level of the opportunity) and paying attention to my Sjogrens history helps me know how to create my future.

As I’ve stated in earlier posts, I try to be very mindful about the emotional and physical stage I’m in, and then utilize tools to help me get to a better stage. I call this being on the Road to Reinvention, and I’m getting pretty good at it!

Continue reading “Tips to Move Through Autoimmune Stages”

How to Define Your Autoimmune Stage Clearly

This is the third blog post to recreate my keynote speech given at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle. You may want to read previous posts about the speech: Relapse to Reinvention and 10 Stages of Autoimmune Grief and Life.

If you are reading this article, you are probably living with an autoimmune disease or you love someone who does. One of the most important aspects of living well (or as well as you possibly can) when you have a chronic illness is to be very honest and very mindful with yourself. It’s the only way that I’ve found to be effective at managing the disease, avoiding as many relapses as possible, and living a fulfilling life.

I love the word “mindfulness”. In general, it means the honest recognition and acceptance of current thoughts and feelings with the goal of reaching a place of greater good. For autoimmune people, we also need to add being mindful about the past: what causes relapses, what helps us feel better, where do we get stuck, etc. There is much research on mindfulness and how to apply it as a meditative, psychological, or (even) business practice, but I am using the term more generally. I try and practice mindfulness so I can accurately recognize my autoimmune stage and either grow to a better state or maintain the great state I’m currently experiencing.

As a person living with Sjögrens, mindfulness is a critical practice because I need to measure changes by inches — not miles — in order to define my autoimmune disease stage clearly and live as well as I possibly can. And this is where it can be challenging, especially for people who have not been managing their disease for very long.

Continue reading “How to Define Your Autoimmune Stage Clearly”

10 Stages of Autoimmune Grief and Life

This is the second blog post to recreate my keynote speech given at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle. You may want to read the first blog Relapse to Reinvention.

After my diagnosis of Sjögren’s Syndrome in 2006, I began the difficult work of grieving the loss of not only who I was, but the dreams of who I wanted to become as a healthy individual. I was so exhausted and in such pain that I knew that I probably could not aspire to be CEO of a large company, or that I would not spend 50% of my time traveling. I also realized that I would need to incorporate new ways to care for myself including altering eating habits. 

This last one may not sound like such a big deal to many people, but one of my top pleasures in life is exploring the world looking for the most amazing food available in any culture…and pairing that with the local fermented beverage of choice! So yes, altering my love of food exploration (spices, textures, acids, heat, etc.) was a great sadness to me. There were many other things in life that I thought were too challenging to be worth the effort, however, this blog is about Reinvention and looking for new and fulfilling ways to live life and explore the world….so onward. Continue reading “10 Stages of Autoimmune Grief and Life”