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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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Comments

— 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!!

— Nov 1, 2021

I have come back to this article many times, so I thought it was time for me to leave a whole hearted "thank you" to the author for documenting the Sjogren's experience so well. I was diagnosed in 2007 after a week long hospitalization for agranulocytosis. I'm now 64, and have certainly felt most if not all of the fatigues described. I live in New England, but just came back from 10 days in Florida. I had two unexpected surgeries this year, and was grateful to even be able to make the trip! While there, I felt like a MUCH younger person. I was active every day. I come home, and a tsunami of fatigue hits. I'm talking about sleeping 12 hours and not being able to do much of anything around the house even. It was that feeling that brought me back to read your article. How silly was I not to think that I would pay for those 10 wonderful days?? The "fatigue grim reaper" always comes a-calling after the fun. I wonder, too, if there have been any studies to show whether Sjogren's folks do better in climates where the humidity is in the 50-60 percentile. I felt like I had turned back time while I was there. But coming back north where it was 20 or more degrees lower, and certainly darker earlier in the day, seemed to go hand in hand with my need to just stay in, and give in, to the tide of exhaustion.

— Nov 9, 2021

I was diagnosed 5 years ago and then diagnosed with Pernicious Anemia a couple of years ago. The fatigue is debilitating. It effects everything. This describes everything I feel everyday. The sudden fatigue just takes me out with no warning! I had to quite bed side nursing, which I miss so much! I was an avid baker and cook before hand. The sad part is I give everything to my current job which is exhausting and I don’t have the energy for anything outside of my work. It is quite depressing.

— Dec 10, 2021

Recently diagnosed, and yes the fatigue is overwhelming to live with and to describe to someone(s) that don't have it or don't understand it. THANK YOU for putting it to words so hopefully more, including our own family, friends and doctors will understand.

— Jan 22, 2022

Thank you for sharing. If feel like you have described my life. I was diagnosed with firbromyalgia 30 years ago and sjogrens 2 years ago. Most rheumatologists in Australia think sjogrens is dry eyes and mouth and that's it. My fatigue is so debilitating that I struggle to work 10 hours a week. I didn't know fatigue was even a symptom of sjogrens until I read your paper. Thank you, I will be sharing this with my gp at my next visit.

— Mar 11, 2022

The flares are the worst. I have constant neuropathy in my legs eye and mouth dryness and trouble swallowing. The flares when they happen include on top of my normal issues swelling and pain of my lungs, liver, kidney and all other organ pain. These will generally last at least 3 weeks. I also had a stroke that the doctors gave credit to sjogrens. I wish I new of medications that could help with any of my issues. Pilicarpine does help with dry mouth and rostasis helps with dry eyes. Unfortunately these are some of the more minor symptoms. I am looking at eye surgery from the dryness coming up soon. And my teeth are fracturing from the dryness.

— Mar 18, 2022

My BFF has had SS now for probably over two years now! The white paper is “right on” but I wish as a good husband that I could make the pain go away but I can’t! She struggled with missed diagnosis for well over 18 months and finally a very smart neurologist in Savannah hit the nail on the head! Mood swings, dryness especially GYN related is troublesome but I am ok with all of that. Almost 47 years of marriage but I am not going anywhere unless God says so!

— Apr 12, 2022

Why is it that everyone in the photo of the 'become a member '
box looks so happy and healthy ? None of them look like they have a chronic auto immune disease .

— May 13, 2022

Thank you for writing this article. Everything mentioned is so accurate. I was diagnosed with Sjogrens only three weeks ago. This process took many years. I am a pharmacist with some medical knowledge and I am very active physically--I've played tennis competitively most of my life. My experience over the past few years has been exhausting trying to figure out my medical issue with many doctor's appointments. I felt like no one believed me concerning my symptoms and I know others thought I exaggerated my situation. The information provided in the article is the story of my life. I have shared this with my family and friends and they have a better understanding of Sjogrens and how it has affected my daily life. Thank you!

— May 19, 2022

This is the best and most accurate description of how I feel every day. I can't tell you how much I appreciate you writing this. It is exactly how I feel! I was diagnosed with Raynaud's, then Scleroderma and a few years ago Sjogrens. I am sending this to my family members and closest friends so possibly they can gain understanding about Autoimmune disease and especially Sjogrens Fatigue! I can't express my thankfulness enough! It just keeps getting worse! Thank you! Linda

— May 25, 2022

I was diagnosed last year. My mouth eyes were very dry. Have a low grade burning in my right thigh. Than the burning tougue started. Have changed alot of my diet. Which helps some.
I have shared all of this to get to where I am as of today. The fatigue 😩 is very bad. It's been every day sun up to sun down. My body feels so heavy and weak. It's even hard
to sit to eat. My head is weak.
Is this extreme fatigue a flare up? I can't explain my feelings to anyone. I don't think they can possibly understand. I don't fully understand this unpredictable disease. Prayers to everyone who suffer from sjogrens.

— Jun 14, 2022

Great Article. Thank you!!
I have being diagnosed for 6months. 44 years old.
I will like to add the “After Eating fatigue”
After every meal no matter how small the words “I am exhausted” or “I am so tired” roll out of my tong”, we have made it a joke at the house.
Anyone else feels like dead after eating?

@Juana
I just found this post and yes, I tend to have a huge after dinner dip too. Mostly in the afternoon and in the evening.

I’m Dutch, she/her, turned 36 early this month. I’m going to the jaw surgeon for a saliva research, because my rheumatologist who diagnosed fibromyalgia last October is absolutely sure I only have sicca complaints. I don’t believe her. The blood test then didn’t focus on ANA, Anti-SSA and Anti-SSB, only on things like the Rheuma factor. When I told her that I also have dry eyes, nose and mouth she connected it to fibromyalgia immediately. I’ve read that Sjögren’s Syndrom can sometimes be invisible in the blood and I heard my dentist say the same. He sent me to the jaw surgeon. My appointment will be this Monday and I’m nervous but also hopeful. The fatigue is getting worse and worse, I feel down because of it. When I test positive for Sjögren’s, I hope to get medication that my body will accept, because I’m very sensitive for medication and the side effects.

— Jun 20, 2022

The very best I ever read about Sjögren's! Thank you so much!!!
I have Sjögren since 20 (or 30?) Years. I am 58 y old and I live in Germany. In 2009 I diagnosed Sjögren's by myself by long internet- researches, but it took years to find a doctor, who believed in me.
For me, the biggest problem is the Fatigue. All plans, all days have to be made with the question: is it possible for me? Which consequences will it bring? This is reality for me, for all of us with Sjögren's...

— Jul 20, 2022

As you may have been told by your doctor; there is no conventional treatment for this disease, BUT there is a herbal approach that has worked in treating the disease. This SLE, systemic lupus erythematosus formula treatments is a modern-day version of this herbal approach that has worked in effectively reversing Lupus across Africa and China for Centuries. Read reviews from other patients who used the treatment on our website is multivitamincare org (or Call/SMS): +1 -956- 758-7882

— Oct 11, 2022

Applied kinesiology....if any of my fellow sjorgren's suffered are struggling, try finding someone who specialized in applied kinesiology. They are usually a chiropractor and no, you don't have to get cracked but they can help with identifying the connection of organs, emotions, inflammation source, and which meridians in the body are most connected to why sjorgren's is presenting itself. I am two years in with the official diagnosis and have had great success with this action.

— 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.

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