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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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— Apr 22, 2023

Anyone ever wake up soaking wet from sweat as well or is this just me or another issue

— Apr 22, 2023

Wake up soaked in sweat. Anyone else? Want to ask as a guest for now please

— May 12, 2023

I have been waiting 7 months now for an appointment with a rheumatologist. None of the GPs at my practice know anything about Sjorgens, I had to Google what it was when I was told I had it. Some of the symptoms I complained of were passed off as the menopause for years, I thought I was going mad and a total hypochondriac.
It's horrible, a symptom tails off and another is waiting in the wings to start. I've ended up with anemia now and gastrointestinal problems along with the dryness and pain. I can practically see my friends raise their eyes up to heaven when I start talking about it. I think they have had enough of it all, bit like myself....

— May 17, 2023

This article should be part of the doctors training. When you tell them fatigue the doctor tends to make you feel like it is in your head. The fatigue is the hardest thing to deal with. Thank you for the article, Sjogren’s Foundation.

I agree. I see a rheumatologist once every 6 months. Every time I go in for an appointment, the office has us fill out this paper updating any new symptoms, pain levels, and so on. I honestly don’t think they pay attention to them. But when I speak to him about the issues I have been experiencing, he brushes it off or blames it on something else. I never get any straight answers from him and he is the only rheumatologist in my city.

— May 29, 2023

I was diagnosed in 2017 with pSS. It has affected my life in every way imaginable. I was always an outgoing person that loved to do things and now I am a homebody that is too tired and sore to do anything.

— Jun 9, 2023

Oh yeah, I forgot to add that my symptoms started to worsen after starting medication for suppressing my endometriosis (got diagnosed early 2022 for this and medication started in March that year). So it could be that hormonal changes have a negative impact on Sjögren’s, if it is indeed Sjögren’s in my case…

— Jul 3, 2023

I’ve had Sjogrens for a very long time and YES -all of the things in this article are SO right. !! And NO -ordinary people don’t understand why you’re associate tired( dibilitatingly tired because they’re never like this !! And YES you have one illness after another because your immune system is almost destroyed. !! YES, we push and push hard but we also PAY for it. !! To family and friends and family-please try to understand and NOT criticize. !! It’s NOT our fault. !! Believe that we wish we were not like this. !! And could do like we used to do. !! And maybe we did too much then. !!

— Jul 6, 2023

Diagnosed at nearly age 58.

15 years & 40+ medical providers then Sjogren’s diagnosed per lip biopsy # 2 after negative labs multiple times.

The lip is still numb after a year, but at least I have my diagnosis, finally!
I already had trouble eating anyway, so now it’s just a little bit worse.

It’s shocking and unacceptable so many in the medical profession disregard chronic symptoms.

I try to forget the humiliation and disrespect endured on the long road to diagnosis, and it continues.

My dentist still argues against the diagnosis and I’m glad she’s retiring or I would have to switch practices.

Unbelievable it took so long to at least find out what I now know but suspect there is more to uncover.

I told doctors for years I checked every box for lupus and Hashimoto and that autoimmune conditions run rampant in my immediate family.

I had not heard of Sjogren’s before and unfortunately, neither have the majority of my doctors.

Amazing so many Dentists, ENT‘s, GYNs, dermatologists, neurologists, gastroenterologists, PC doctors and even rheumatologists are ignorant on this condition, when it is one of the more common autoimmune issues.

I was told several times I did not have either an autoimmune or a thyroid condition. I have confirmed low thyroid values as well as multiple nodules and chronic swollen neck lymph nodes, which I have to monitor on an annual basis as well as getting my blood checked periodically to be sure I don’t develop lymphoma as we all should be doing.

I can’t say I don’t worry about that but take comfort it’s being monitored so if something comes up, it’s caught early… if it’s not too late already, considering it took so long for me.

I wish I had the energy to be angry. I wish I could see every doctor I visited before and say I told you I was sick and you did not believe me and you poo-pooed my symptoms, but mostly I just want to teach them so it will help the next person to behind me.

As to the fatigue, I think I’ve gotten used to it, just learned to function around it, though initially that was the primary symptom. I felt 90 in my mid 40s and had never been sick before. I felt like I was dying and told doctors as much. They responded with things like maybe you had the flu or mono or you’re just anxious or going through an adjustment or you look fine to me or it’s not like you have to drive to a job in a bank or anything, yada yada.

I pray we can push better education for all doctors. They should talk with each other better and consider the patient’s multitude of symptoms not just those in their specialty to connect the dots.

We have also got to push not only for sooner diagnosis, but for any true cure/relief… hydroxychloroquine is mainly for lupus, and it did not work well for me made things worse with the brain fog, and GI symptoms.

This thing is real. It is debilitating, and it can be life-threatening due to the chronic multi system inflammation.

I can say my quality of life is pretty much pathetic at this point, having so many different issues, it’s too much to go into here, but I do cherish the good days and don’t expect a family to understand. No one can honestly I have lived it.

I have learned no matter how we will be perceived, we must must must be honest about how we feel and do not play down symptoms at all to try to not seem hypochondriacal because you’re going to be seen that way no matter what sadly, if you are a female and even buy female doctors.

I accompanied my husband to a doctor visit the other day, and the Doctor Who was a male doctor actually said oh you were an excellent health I really like the healthy patients. Says the quiet part out loud!

Thanks to everyone for sharing their stories and I know this is an old post so no one may read it but I hope it helps somebody.

Hang in there and stop trying to pretend you feel good when you don’t because you’re only going to exhaust yourself and never stop being kind or charitable just know the more you do for people the more they will expect.

By the way, I got my diagnosis at mayo, 8 years after initial visit.

Would go to Johns Hopkins if I lived closer. I think they’re a bit more specialized in this but am probably in the best hands in my area for now.

— Aug 3, 2023

I’m having problems with fatigue. Sometimes I just can’t stay awake. My roommate thinks I’m faking it to get out of housework and that I can “just wake myself up”. She refuses to read any articles on the subject. Any suggestions?

— Aug 3, 2023

Great article. My loved one/partner/housemate and lifemate has Sjögren’s. A dear friends of ours, although an extremely sensitive and intelligent person, nevertheless has trouble understanding that the pain of Sjögren’s does not "go away." It flares up and can subside, yes, but the question "Is ___ feeling better?" is not like asking if someone is better from the flu. Even on the best day, with Sjögren’s the true answer can only be "Better than the other day, yes, but even the best days are painful."

What you say about depression is also true. Depression is not the cause of Sjögren’s, and is an uninformed -- and even hostile -- explanation of its pain. But depression can certainly be an effect of Sjögren’s, and can certainly aggravate the fatigue.

— Oct 11, 2023

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— Dec 14, 2023

You could also add Migraine Fatigue, as some Sjögren’s patients suffer from migraines. I know I do. Migraines are debilitating and there is soreness and exhaustion after the migraine is over.

— Jan 5, 2024

Hi I understand how you guys are suffering,as I have had problems with gritty sore red eyes for 15 yrs,which now only play up in cold winds,but sometimes the odd day or two in the summer.Always had gastric problems,migraines sensitive to light,eyesight deteriorating,vomiting and diarrhoea spells,low blood pressure,dry throat trouble swallowing bread crackers etc.Have'nt been able to work since 2015 as body motor doesn't allow me to do productivity I want to do,and have to do things within 2 hours away in my own time and rest .I have intolerance to exercise as body won't except this.Living a nightmare as had swollen sub gland which was infected once and hospitalised for it,and still keeps swelling without infection,have swelling in body as well.Thought I had a b12 problem as it was on the low side and deficient in vit d as well,but now take vits for this,and levels have improved.After some research I believe I may have sjrogens as I match alot of symptoms including chronic cough ,where I also got chest infection even though 2 doctors said chest was clear,but xray showd massive infection.Doctor did test for autoimmmune but came back negative.I also found out that sjrogens can cause lesions in the brain frontal or temporal lobe near hippocampus,which is where I have one,and my neuro consultant didn't know what it was .Also have started getting purple red blotches round both ankles with a red rash on left foot as well,which I found out sjrogens can cause as well. Don't k ow if any one else has had this and am struggling to get doctor to recognise symptoms since test negative,which alot of people are.

We're the "autoimmune tests" for antibodies to specific antigens? Or just a generic c-reactive protein and rheumatoid factor? Cause mine are also negative and rheumatologists don't even want to talk to me. I did antinuclear factor, it was positive, now scrapping money for an antinuclear panel. According to test results, SS-A/RO and SS-b/LA are the specific antigens to which you can find antibodies to in 50-90% of Sjogren patients. You might wanna do those, just for the peace of mind if nothing else.

— Jan 27, 2024

Thank you so much for writing this article about all the fatigue aspects of Sjogren’s. I think the article is spot on and couldn’t have been explained any better. The fatigue is the worst part. I miss my old self and my family misses the old me too. Good health is to be cherished more than anything. I wish there was a cure but things could be worse. It isn’t a death sentence but it can feel pretty bad at times physically and mentally. Hanging in there with this torturous disease for over 10 years now.

— Feb 6, 2024

I found this article as I am laid out in bed today with a bad flare, it’s so comforting to know others understand! I am on Plaquenil, Arava and monthly infusions of Orencia. I have neurological effects and rheumatoid arthritis. When I tell people I have Sjogren’s I imagine they look it up and see dry eyes and mouth and think what’s the big deal?
Thanks for sharing your experience with these different levels of fatigue. Today is one of the worst for me, along with pain and weakness. I tried to start spinning with our new bike last week and perhaps pushed myself too far, hence the flare which I haven’t had in about a year! Hang in there Sjogrens friends!

— Mar 23, 2024

I cannot thank you enough for this article. I have found it to be a very useful tool to help me identify which fatigue(s) I am dealing with. Once identified I can target it and deal with it specifically. This article has also been very useful in helping others understand some of what I face daily.

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