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by Teri Rumpf, Ph.D.

This is the second revival of an essay I wrote fifteen years ago, originally entitled 11 Types of Fatigue. Once again, I’ve been asked by the Sjögren’s Foundation to give it new life. I thank them for the opportunity and hope that in the fifteen years that have passed since the original essay, there is increased acknowledgment of fatigue as a major factor in Sjögren’s and a growing knowledge that Sjögren’s is a systemic disease. My list of fatigue now numbers fifteen different subtypes. It is by no means meant to be exhaustive…. the bulk of the article remains the same as it did in both 2003 and 2013.

A quick update: The friend mentioned below was my first friend with Sjögren’s and as such, has always been very special to me. We still speak in a kind of shorthand, as I do with most if not all of my Sjögren’s friends. The friends I have made over the years are the best outcome of this disease. As a group, we understand what it means to say that we are “fine.”  We know that when we say we are “tired,” it means really tired, i.e. that something is going on, something out of the ordinary, beyond the everyday feelings of fatigue. “How are you?” is not a question in our general culture. It is a greeting. As such, it deserves a real answer only in those circumstances where there is an understanding that the person asking truly wants to know. 

For those of you who haven’t seen it, here is most of the original article with a few additions and revisions:

"How are you?" I asked a friend who has Sjögren’s. "Tired," she said, "how are you?" "Tired," I replied, knowing we understood each other. We were talking about a special brand of fatigue. Later that day, a friend who did not have Sjögren’s asked me the same question. "How are you?" she said. "Fine" I responded, thinking it was the simpler way to answer a basically rhetorical question.

Not everyone with Sjögren’s suffers from fatigue, but many of us do. According to the 2016 Living with Sjögren’s survey done by the Foundation, fatigue was the third most prevalent and disabling symptom of Sjögren’s. For me, fatigue has been a problem more disabling than dry eyes or dry mouth. I long for normal energy and the ability to sustain activity, any activity. I long for the kind of fatigue that gets better with a good night's sleep. I want to be able to do things spontaneously. I wish I did not have to pace myself or plan rest stops. I wish that I could just get up and go, but, reluctantly and somewhat resentfully, I know that fatigue is a permanent part of my life. Having decided that if you must live in a particular landscape, you should learn the subtleties of the territory. I've come up with the following subtypes. Your experience may vary:

  1. Basic fatigue: This is the inherent fatigue that I attribute to the inflammatory, autoimmune nature of Sjögren’s. It's with me all the time. It differs from normal fatigue in that you don't have to do anything to deserve it. It can vary from day to day but is always there. For me, there appears to be a correlation between this kind of fatigue and sed rate (ESR). When one goes up, so does the other. I don’t know how often this phenomenon occurs. I could also call this my baseline fatigue, which fluctuates and gets better or worse. All of the following are superimposed on this basic fatigue.
  2. Rebound fatigue: If I push myself too far and ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e., do too much one day and feel it the next. If I push myself today, I very likely will have to cancel everything tomorrow. An extended period of doing more than I should will almost certainly cause a flare.
  3. Sudden fatigue: This 'crumple and fold' phenomenon makes me resemble a piece of laundry. It comes on suddenly, and I have to stop whatever I'm doing and just sit down (as soon as I can). It can happen anywhere, at any time. It is the kind of fatigue that makes me shut off the computer in mid-sentence. It is visible to those who are observant and know what to look for, even though I make gargantuan efforts to disguise the fact that it is happening.
  4. Weather related fatigue: Not everyone has this particular talent, but I can tell that the barometric pressure is dropping while the sky remains blue and cloudless. I feel a sweeping wave, a malaise, that sometimes lifts just after the rain or snow has started. Likewise, I know when a weather front is moving away, even while torrents of water are falling from the sky. I feel a lightening in my body and begin to have more energy. This kind of fatigue is accompanied by an increase in muscle aches and joint pain.
  5. Molten lead phenomenon: This fatigue is present when I open my eyes in the morning and know that it is going to be a particularly bad day. It feels as if someone has poured molten lead in my head and on all my limbs while I slept. My muscles and joints hurt and doing anything is like walking with heavy weights. It is often associated with increased symptoms of fibromyalgia and sometimes helped by heat and massage.
  6. Tired-wired: Tired-wired is a feeling that comes from certain medications, such as prednisone, too much caffeine, or too much excitement or perhaps it is just a function of Sjögren’s. My body is tired, but my mind wants to keep gong and won’t let my body rest.
  7. Flare-related fatigue: Flare-related fatigue is an unpredictable state of increased fatigue that can last for days or weeks. It may be caused by an increase in disease activity or an undetected infection. If the latter, it either resolves on its own, or eventually presents other signs and symptoms that can be diagnosed. Additional rest is essential to deal with this kind of fatigue, but rest alone will not necessarily improve it or make it go away. Once a flare begins, it is impossible to predict where it will go or how long it will last.
  8. Fatigue related to other physical causes: Fatigue related to other physical causes, such as thyroid problems or anemia or other diseases superimposed on Sjögren’s. This kind of fatigue makes you feel that you are climbing a steep hill when you are really walking on level ground. It may resolve once the underlying organic condition is diagnosed and treated. Thyroid problems and anemia are both common among Sjögren’s patients, but many other kinds of fatigue may be superimposed. Sjögren’s and fibromyalgia often co-exist, such that it is difficult to separate one from the other.
  9. Fatigue impairs concentration: Fatigue impairs concentration, precludes thought, and makes me too tired to talk, think or read. Fatigue robs me of memory and encloses me in a fog of cotton wool so thick I can't find my way out until the fog miraculously lifts. For me, brain fog goes hand-in-hand with other kinds of pernicious fatigue.
  10. Stress, distress, anxiety or depression: Stress, distress, anxiety or depression all can create a leaden kind of emotional fatigue that can be as exhausting as one due to physical causes. Although some people do not associate their increased fatigue with emotional states, many are aware of the effects of increased anxiety and depression, even if they cannot control what they feel. Intense emotion is very draining. Stress, anxiety and depression all are known to disrupt sleep.
  11. Fatigue that comes from not sleeping well: Some people with Sjögren’s have trouble both getting to sleep and staying asleep. Some wake up in the morning feeling as if they had never slept at all. Many aspects of Sjögren’s affect sleep: being too dry, in too much pain or malaise; multiple trips to the bathroom, the need for water or to put in eye ointment all deter a good sleep. Lack of restorative sleep increases fatigue. Fibromyalgia worsens when you don’t get a good night’s sleep. Chronic pain increases fatigue.
  12. Fatigue that comes with normal aging: I’m old enough for Medicare now and my friends are more tired too, although they seem to be able to do two or three or even four times what I can do on any given day. In fact, the gap between what they can do and what I can do just seems to be growing, despite my best efforts. It’s been a long time since I tried to keep up, but it still hurts that I can’t.
  13. Fatigue that comes from a chronic illness that just won’t quit: We’ve all heard the expression “sick and tired of being sick and tired” and that phrase truly captures what many of us feel. I would take it one step further. There’s a fatigue that comes with the uncertainty of a chronic disease. It’s a debilitating fatigue born of never knowing what will come next. The chronicity of Sjögren’s can wear me down and I have to make special attempts not to let it. When these attempts don’t work, I wait a while and try to find something else that distracts me from my illness

Plus two more:

  1. Fatigue that comes from trying to keep up with family and friends who don’t have a chronic illness: As much as I try, it just isn’t possible to keep up. I’m on a schedule that’s all my own, and as much as I fight it, it separates me from the people I love. I’m willing to compromise to do things their way, but my body won’t cooperate.
  2. Doctor Fatigue: I get very tired of spending my time in waiting rooms, having lab tests, and going to doctors. I don’t understand why I didn’t say this before. I’m sure it’s self-explanatory. Enough said.

It's difficult to explain the unnatural quality and intensity of Sjögren’s fatigue to someone whose only experience has been with what is normal. We're not talking about the same stuff. It’s apples and artichokes. Sjögren’s fatigue assaults everything I do. There isn’t a part of my life that hasn’t been touched by it. It is there even on my happiest days.

Because people don’t understand, it’s often misinterpreted. "Is it depression?" a health care professional who didn't know much about Sjögren’s asked me. I tensed. Was he saying it was all in my head? I began to get angry but then gave him the benefit of the doubt. I put my first reaction aside and decided he was trying to understand. I was relating something outside his frame of reference, and he was attempting to find a point with which he could identify.

When you describe Sjögren’s fatigue to someone who has never experienced it, you are asking him or her to think outside the box. You want them to understand an experience that is common to those who have Sjögren’s and many other autoimmune diseases but rare otherwise. Perhaps their first reaction will be negation or denial. While it’s always difficult to encounter expressions of disbelief, it is not uncommon.  I tried to see it as an opportunity to educate.

"No," I said to the doctor who asked about depression, "think of it as a never-ending flu that varies in intensity but never goes away." He grimaced.

This information was first printed in the Foundation's patient  newsletter for members.  Suggested reading: The Sjögren’s Syndrome Survival Guide, by Terri Rumpf, PhD, author of the "15 Types of Fatigue" article, and Katherine Moreland Hammitt, Sjögren's Foundation Vice President of Medical & Scientific Affairs, this Foundation's best seller is often referred to as a “support group in a book."

If you’re not already a member of the Foundation, please considering joining and providing one more voice to increase awareness, educate others, and encourage research – all of which help in the fight to conquer Sjögren's.


Comments

— Apr 3, 2020

Since 1 year

— May 13, 2020

Thank you! There really are THAT many kinds of fatigue. It sucks to never be sure how you will feel in any given moment. This helped me a lot.

— Jun 5, 2020

While I was reading, I felt like you were telling my story and describing my body.
Thank you and I am sharing this with my family ✨

— Jul 9, 2020

THANK YOU! Finally, descriptions of fatigue that make so much sense. This is something I can share with family, I think, and it should help them understand why each day is different and depends on a hundred not-easy-to-catalog factors.

— Jul 17, 2020

I was diagnosed with SS this week. 16 years ago I was diagnosed with Parkinson's disease (PD) and responded well to levodopa/carbidopa treatment for most of those years. In the last couple of years I experienced tremendous fatigue, tremendous weakness and shortness of breathe. I have sought help repeatedly from various doctors without success. A couple of weeks ago, my PCP sent me to a rheumatologist because my DNA was positive for lupus. As a result of fine-tuned blood analyses, SS was diagnosed. I am amazed at what I am reading about SS. The burning tongue which no neurologists correlated with PD. The neurological conditions that neurologists said did not sound like PD. The muscle and joint pain that we all equated with PD. I would continue but at this moment I am getting too tired to type. Does anyone else also have a PD? Thanks

— Aug 18, 2020

Me identifiquei com todos os tipos de fadiga. O pior que muitos acham que é preguiça. Aff!!!

— Aug 18, 2020

With SS and a bunch of other health problems ,some time is hard to know what it is.The prayers help .

— Jan 7, 2021

I just joined yesterday. I was diagnosed 2 days ago. I paid & registered. How do I sign on?

— Feb 3, 2021

YES! A million times yes! And I get so sick and tired of being sick and tired. Right now I'm dealing with stress/anxiety fatigue. I was laid off 4/3/2020 due to you know... And I can't find a job making anywhere close to what I was making. My husband wants me to wait until Covid is more under control before going out into the workforce. I'm stressed, anxious, and maybe a little depressed about being stuck at home (I was an outside sales rep so I was always with people). And then I try to tackle a big project at home that I always overdo and then I'm achey tired. I wish my husband could live one week with this disease. He tries to be understanding but he can't really understand.

I was always grateful for having lots of energy before SS. Things seem to be changing. Yes the dry mouth and eyes (Medicare does not cover eyes and teeth very well), now pulmonary fibrosis. Have had SS about 5 years. Lately I have this bizarre fatigue. Ever-present. Good sleep doesn’t help. I feel sad and angry about this. Hopefully this will pass.

I was always grateful for having lots of energy before SS. Things seem to be changing. Yes the dry mouth and eyes (Medicare does not cover eyes and teeth very well), now pulmonary fibrosis. Have had SS about 5 years. Lately I have this bizarre fatigue. Ever-present. Good sleep doesn’t help. I feel sad and angry about this. Hopefully this will pass. God bless us all!

I was always grateful for having lots of energy before SS. Things seem to be changing. Yes the dry mouth and eyes (Medicare does not cover eyes and teeth very well), now pulmonary fibrosis. Have had SS about 5 years. Lately I have this bizarre fatigue. Ever-present. Good sleep doesn’t help. I feel sad and angry about this. Hopefully this will pass. God bless us all!

— Feb 4, 2021

That is so well written. I feel like someone else finally understands. However, your title states about bathing and the difficulties of pain associated with that task. I not only have pain, I have fear. What if I fall in the tub. I have a shower chair, but some things are hard to do while sitting. When I'm finally finished, not only am I exhausted, I can't get out of the tub, I can't breathe and drying off... another impossible task. I half do it, then put clothes on and suffer from pain into the next day. Inevitably, I sleep for a couple of days just to try and regain some energy.

Showering is the worst for all the reasons you mentioned. I would add to that blow drying my hair. Holding my arms up while using the blow dryer is physically tiring and for me, painful.

— Apr 12, 2021

Thank you for this reading. I have copied to hand out to family and friends (hoping it isn't an infringement issue.)
This is the best description of the endless fatigue that plagues us. I might add anhedonia also goes hand in hand with the fatigue, as would be expected. Layers

— Apr 23, 2021

This article is exactly what everyone that has a loved one with this needs to read and understand!

— May 11, 2021

I posted this on my FB page. A friend copied it and sent it to a circle of our friends. They were all shocked. Now they have a greater appreciation when I say I just can't make our gathering. Thank you!

— May 18, 2021

Thank you!! I finally feel understood. I have a busy week this week and am dreading it, still in bed with the Molten lead feeling happening. No one understands, which makes it so much harder. I get looks from friends and my own family like I’m exaggerating or it’s in my head. I was diagnosed last year, but have had multiple symptoms for at least 15 years, including joint replacement from severe osteoarthritis, but no one pieced it together. The diagnosis was a combination of relief to finally know as well as sadness. It’s nice to have people out there who get it.

— Jun 8, 2021

As a long-time Sjogren's patients all I can say is well done. The only thing I would change is make the last point first. There is nothing more discouraging to me than having to explain my illness to a doctor I am seeing who is supposed to help me, and then have me pay for it. Kudos!

— Jul 7, 2021

I have just recently been diagnosed with sjogrens and am dealing with all kinds of emotions. Knowing that I cannot do the things as I used to and fatigue being a big part of that!! Articles like this are extremely important for me so I can give them to my family so they can understand why I don’t do the things I have always done before!!

So thank you

— Jul 27, 2021

Wow! Sounds like you are describing me. Thank you for identifying the various types of fatigue. Hopefully if I explain it this way, my family and friends will have an understanding of their definition of fatigue is versus someone with Sjorgens.

— Aug 4, 2021

WOW!! Terrific info!! Fatigue,
they all fit me . S S is a very
complex syndrome. All we who suffer with it need all the info we can to help us along this complex road. Thank you for your help.

— Aug 4, 2021

Thank you for posting and reposting. Your descriptions of fatigue are helping me understand what I'm experiencing. I see now that I've had symptoms for years but was only diagnosed a year ago when my ANA test came back positive. My rheumatologist was fairly dismissive saying it was just dry eyes, dry mouth. I wish there was a list of doctors who are experienced with Sjogrens. I'm in the Chicago area. Surely there are doctors here who understand and can help. Any suggestions would be greatly appreciated. Thanks

— Aug 10, 2021

Yes 11X over. And sometimes a combo. Really frustrating. But #2 really is awful because people don't realize how hard you are pushing. They think you can do all of those things and you suffer afterwards and sometimes it's not worth it.

— Aug 10, 2021

I usually said that feeling of fatigue is almost been torture for 24 hours of the day

— Aug 10, 2021

Great article and on point. 51 year old male diagnosed in 2016. Always “tired”, just many different levels at different times.

— Aug 11, 2021

Yes, yes, yes a million times Yes! I have had sjogrens diagnosed in 2007. It’s been a battle trying to educate family to understand what it is and how it has affected me. Especially trying to help my daughter understand. She said once I think you make all this up in your head. Ugh!! We don’t see eye to eye. I plan to print and send to family. Thank you for this.

— Aug 11, 2021

Reading this actually made me cry. I struggle with constant fatigue most of these are exactly how I feel most of the time. I HATE being exhausted all the time really gets me down. So good to read that other people struggle with fatigue with shojgrens.

— Aug 12, 2021

Thank you for this article! I was diagnosed 13 years ago with Sjogren’s and Lupus SLE. Sometimes it is hard to distinguish which disease is responsible for the overwhelming fatigue I suffer from. when my doctor asks me which one is being active many times I just don’t have the answer. I get very frustrated knowing that I am having a harder time keeping up with my family and friends and have to stop and rest or slow down - they just don’t understand how quickly I get wiped out. I am saving this article to help me explain to them how I am feeling.

— Aug 31, 2021

Sjogrens fatigue sounds like Chronic Fatigue syndrome.
Is Sjogrens one cause of Chronic Fatigue?

— Sep 22, 2021

My daughter has sjogrens along with lupus and fiber myalgia. Thank you. You have wiped the fog off the glass so I can better understand and hopefully be a more compassionate and supportive mom. I thought of the fatigue during my early pregnancies and how I just could not stand. How debilitating it was. Yet this was limited to the first three months. I can not begin to imagine a lifetime of this fatigue. I will keep this article and reread this to remind me. To remember. Then from that place, may I bring more comfort to my precious and beloved daughter. Thank you.

— Sep 24, 2021

This articulates to the letter what I have been trying to communicate with my family and doctors for over a year. 15 of 15. Thank you for this!

— Oct 11, 2021

YES!!!! to all of the above definitions of various types of fatigue. This information would be helpful to share with family members of those suffering from SS. I was diagnosed in 2016.

— Oct 25, 2021

Thank you SO much! I read this to my husband. He said, "this sounds like you wrote it!" I am recovering from breast cancer and dealing with an aromatase inhibitor and Sjogrens. My theory tells me my "pain is not Sjogrens because Sjogrens doesn't produce these symptoms. I can't give you pain meds just Pilocarpine." I don't want pain meds... can't afford them and hate not having control. I am looking for help in understanding what is happening to me. Dr says the symptoms I have "are all well documented side effects of aromotase inhibitor you are on." She did not help at all! Why don't all rheumatologists get this? Total waste of time seeing her once a year. Symptoms get worse, she does no testing, no questioning. You have helped me more than I can say... THANK YOU!!

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