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My friend Sarah Schafer, a Sjögrens 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 Sjögrens 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…
Sjögrens 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 recently (article titled, “Fatigue in Sjögrens: A Paradoxical Response. Decreased pro-inflammatory cytokine levels tied to higher levels of fatigue”, by researcher Wan-Fai Ng from the UK) 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 Sjögrens Fatigue
Treat every medical issue that is a known contributor to fatigue:
1. Medical problems (not necessarily directly due to Sjögrens) — 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 Sjögrens patients have these, sometimes undiagnosed. Treatment helps a lot.
New Sjogren’s Guidelines Recommendations:
These are painstakingly reviewed by Sjögrens experts. If you have not read them, do! Available at sjogrens.org, 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 Sjögrens 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 Sjögrens 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 it is 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 Sjögrens patients and educating doctors on the disease!
If you are looking for another way to manage your energy, consider following the schedule I have included in the post Tips to Move Through Autoimmune Stages. If you have any tips that help your fatigue, place them in the Comments section and I will post them for others. Janet
Another great post, Janet! Thank you for sharing
Thanks Lucy! Did you get a couple of good tips from Sarah?
Yes I did. I especially loved the planned rest and exercise. I need to be reminded that these are not only acceptable habits in our busy lives, but necessary ones. Exercise has been my life saver, but when I’m extremely fatigued, as I’ve been lately, I tend to skip my workouts to save my energy for “more important” things. This has to be an important part of my care plan. Mentally and physically! I also need to plan afternoon rests and not feel lazy because of it.
I love how you pointed out the fact that she has assessed information with the mind of a doctor and the heart of a patient.
Great advice for sure!
Reading this about food is so true… It’s like I wrote it! This is exactly what I’ve been telling the doctors. Adding protein is important, if I have carbs/sugar by itself, I crash out 2hrs later without fail. Guess it’s due to being so fatigued.
Hi Lisa, I’ve had the same experience!I’ve recently been trying to introduce more grains (although I do have protein with it), and I think that is what may be causing my increase in inflammation and brain fog the past two weeks. So it’s time for elimination diet of grains, again, and see if this is the culprit or if it’s something else.
I go weekly to acupuncture. It seems to help with a myriad of Sjogren’s issues. I also go to water aerobics twice a week. I ride a recumbent bike two or three days a week. I suggest having a recumbent bike at home.I’m still exhausted but think these activities help with exhaustion, especially the acupuncture. It truly is a miracle worker! I quit taking plaquenil after one year of misery taking it.
Hi Laura, Thanks for sharing your activities with us! I’m really interested in your acupuncture comments for exhaustion as that’s not something I’ve tried. I think I’ll look into that one myself!
How does one know if plaquenil works?
Hi RenieB,
Plaquenil does not work for everyone…but thankfully it does for me. Without Plaquenil, I am sleeping most of the day and unable to accomplish much. Plaquenil also takes time to build up in your body to determine whether it works for one person (and not another). For me, it was about 6-months. I believe Drs generally state 3-6 months for patients. To determine if it works for YOU, you can only put in the ramp up time and then see if you feel better. Perhaps keep a log of your symptoms and mood so you can really chart changes. Be sure to work closely with your Rheum to chart success or if you need to change your drug regime.
Hi there, I am very curious about the name of the Alabama neuroscientist that is showing clinical interest in SS related fatigue. Is this something you could share (if known) ? I’m from Alabama and am currently going through testing (with my newly referred Rheum/Immun.
Hello Heather, I am not familiar with the Dr you are speaking of…but if I hear about her/him I will be sure to share the information. Currently, Sjogrens is of growing interest in the medical and pharma community and we will all be hearing more about new developments and interest. Much of the information will be delivered via the Sjogrens Foundation so be sure to keep your eyes peeled on the information they relay via The Moisture Seekers, and Facebook.
Hi, this is my first visit to your blog. I was diagnosed with Sjogrens about 7 years ago and I am dealing pretty well with the dry eyes, dry mouth, and joint pain. We bothers me most is what I call “Sjogren’s fevers”. They come on suddenly and last 3 hours to 3 days; however, right now I have one that has lasted 7 days. These are my feelings with the “fevers”:
• Feeling like I have a 100deg fever while my thermometer always registers
between 96.5 degrees and 97.5 degrees
• Very sensitive skin, painful to the touch like when I’ve had a real
temperature
• A heavy feeling in my chest
• Napping, resting, or sleeping does NOT work
• Tylenol, water, or exercise does not get rid of the “fever”.
My first question is whether there is a name for this feeling? Secondly, what can I do about it? I had to leave work early the other day cause I couldn’t concentrate because I felt so bad and I left a neighborhood party early last night. So this time, the “fever” is really negatively impacting my life. I would appreciate any insight or suggestions!!
Yes Carol, I have had the fevers. I don’t know what they are called other than just “Sjogrens Symptom”. To me, they are an indicator of a flare and time to lay low. It is these types of symptoms that keep reminding us that yes, we are ill. However, this is also a good question to post on SmartPatients and ask other patients! But do take care of yourself….
Hey! Just found this blog. I’m 22, male, and was recently diagnosed but I have had problems with Sjögren’s for as long as I can remember (which doesn’t say much cause my memory is terrible). Still, I remember always having trouble going for runs when I was a kid because my mouth would be too dry and it was hard to breath. I don’t know if you’ll see this or if anyone else ever will but I can share some tips that I have found to be helpful with fatigue:
1. Get enough sleep, and do it consistently. If I ever get less than 7-8 hours I really just don’t function, and even if you can do it every now and then, it’s not worth sacrificing. I also highly recommend 20 minute afternoon naps!
Consistency is key here though! Go to bed and get up at the same time every day and your body will get conditioned to this. It helps your body fall asleep faster and sleep more deeply when you do.
2. Get an under-the-desk treadmill. I’m a law student and I do a lot of reading and note-taking. With a treadmill, I am able to read, memorize, or take notes while walking and it really helps prevent me from feeling like falling
3. Try and get some kind of adhd medicine. (Originally I thought I had adhd because of my problems staying awake and focused while doing schoolwork.) I take vyvanse now and would recommend talking to a psychiatrist about possible medication.
I hope these tips help students or anyone in general who is struggling to come to grips with understanding Sjögrens!
Thank you for your comment and happy to have another male voice join us at SjogrensLife! You suggestions are a nice addition. I have heard others benefit from ADHD medication but I have not taken that route myself. This is definitely something that readers will want to discuss with their Dr. if they feel they are having challenges focusing on work. Take care!