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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 going 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.

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I used to wake up and my mouth was like a desert. I had a humidifier, going, all night long.
Dr. prescribed Pilocarpine 5mg, three times a day. Small white pill. Dry mouth gone.

For Dry eyes, I use over the counter, Thera Tears. One a day. My eyes are now moist, all day.

Are you able to wear contact lenses with using thera tears? My eyes are so dry I had to stop with the contacts and go to glasses. I have autism and a sensory disorder and it feels like complete torture to have glasses sitting on my face. I really need help getting back into my contact lenses!

Biotene toothpaste, mints and mouth wash - drinking more water (flavored with small amounts of juices, wine, tomato juice, whatever to make water taste better) I've just discovered some chia kumbucha by GTs & the bottle lasts a long time when you keep adding water to it. nose breathing YOGA two showers a day.... enjoy trying different drinks - mixing small amounts of tea, coffee and other things with the water.... I was raised with VARIETY IF THE SPICE OF LIFE......

I find that chewing gum does help with a dry mouth but ceases when you take it out. My dry eyes seem to be linked to sinus problems but helped using a neti pot to flush sinuses

Plaquinil, AKA Hydroxychloroquine. I received my diagnosis in late 2021. It's pretty advanced, I believe. The HCL. taken twice a day, takes around 2 months before improvements start. For me, they were subtle and small, but at the same time huge. I've become a little more active. Am in a little less pain. Have a tad more stamina and am better able to act on a desire to do small tasks. This doesn't sound like much, but I'm pretty thrilled to see these positive improvements after only heading downhill for years. I understand prednisone is also used to treat Sjogren's.

— Aug 18, 2023

In reply to by Patricia

Thank You Patricia! I've been dealing with Rheumatoid arthritis and Hypothyroidism and possibly Sjogrens for several years. I FINALLY....Just today found a good rheumatologist and he prescribed me hydroxychloroquine and your story gives me HOPE!!!

— 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 ✨

It was so poorly understood even between medical profession.
They will ask me how to spell it, never mind explain the ever lasting symptoms.
Thank you for writing this, I feel like a hypochondriac pest and I am still pushing, but recently felt that my body is fighting it back and I need to look to adjust work load and social life drastically. My Sjogren is not going away, but to understand it took me a while. Reading your article I felt more confident to take next step and slow down, will have to think of finding solution as I can't cary on with the speed like before.

— 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.

Oh Kathleen I see this from 2022 hope you’ve had some relief. I HATE Sroghen’s Disease it is destroying my life. The bizarre fatigue has hit me this month and started B-12 shots and Iron Infusions to help. I’m so angry and husband has no patience or clue how to deal with this. He says just rest.
Getting old after 36 yrs of marriage not being there mentally thru sickness and health. I feel like a burden and with I could just go somewhere away or gone
Wish there was a place for us to be treated with respect and heal with medical staff that knows what we need. Lost all my lower teeth due to dry mouth
Blood clots now on thinners I’m done 😢😢 so much my brain gets excited to do and my body says NO WAY YOU YOU'RE MINE - today I lost my faith for the first time I’m lost 😞

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 always had a very high energy level. It's been very difficult to accept the fatigue. I cannot participate in social activities as before. Was a happy person, I find my fatigue depressing. I try to stay positive, but it's hard. Only other people with SS 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. 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.

I absolutely agree. My fatigue has been the worst thing about Sjogrens despite me losing all my own teeth at 50 and having severe eye issues. I struggle every day. Havent been out in the evening for 13 years. Simply can’t. Have no life and lost friends who simply can’t deal with someone who is always tired. Very few understand what it’s like. You may look ok but you feel like you are about to snuff it any time soon. Take good care and be very very kind to yourself. That’s all you can do as there’s no cure.

Autologus Serum Eye Drops made a huge difference in my dry eye. I no longer
Use over the counter eye drops. This is not covered by Medicare.

I am 62 and have lost all my teeth over the last five years. I am in constant muscle pain from the inside out and can't even describe it too anyone. I cannot even stand my hair touching my face. The best way too describe my muscle pain is almost a burning sensation but no heat. I can't even describe it words. Then the joint pain. I went to an ENT yesterday with a lump under my jaw bone and he belives it is a minor swollen saliva gland. I don't think so. Every thing is minor to the medical professionals. God Bless to Everyone.

— 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.

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