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13 Types of Sjogren's Fatigue

Posted on Thu, Apr 17, 2014

13 TypesThis is a revival of an essay I wrote ten years ago, originally entitled 11 Types of Fatigue. 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 ten years that have passed since the original essay, there is increased acknowledgment of fatigue as a major factor in Sjögren’s. I’ve decided to add two new types of fatigue to the list, which is by no means meant to be exhaustive.

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 only good 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 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 a 2012 survey done by the SSF, fatigue was the third most prevalent and disabling symptom of Sjögren’s. Fatigue has been a problem more disabling than dry eyes or dry mouth for me. 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:

Basic fatigue
1. 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.

Rebound fatigue
2. 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.

Sudden fatigue
3. 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.

Weather related fatigue
4. 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.

Molten lead phenomenon
5. 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.

Tired-wired
6.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.

Flare-related fatigue
7. 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.

Fatigue induced by other physical conditions
8. Fatigue related to other physical causes, such as thyroid problems or anemia 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 resolves 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.

Fatigue that impairs concentration
9. Fatigue that impairs concentration precludes thought, 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.

Stress, distress, anxiety or depression
10. 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.

Fatigue that comes from not sleeping well
11. 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.

And two new ones:
Fatigue that comes with normal aging
12. 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.

Chronic Illness Fatigue

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.
 
It's difficult to explain the unnatural quality and intensity of this 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 is pervasive. It 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 article was first published in the November/December Issue of The Moisture Seekers. Suggested reading:The Sjögren’s Syndrome Survival Guide, by Terri Rumpf, PhD, author of 13 Types of Fatigue article, and Katherine Moreland Hammitt, SSF Vice President of Research, this SSF best seller is often referred to as a “support group in a book."

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Topics: Depression, Symptoms, Joint Pain, Fatigue, coping with sjogren's, Chronic Pain, Flare,

Patients Sharing with Patients: Tips to Cope with the Winter Blues

Posted on Thu, Jan 30, 2014

Weather can affect everyone differently, and some people prefer colder temperatures. Although when living with certain chronic illnesses, like Sjögren's, winter weather can have a negative effect on a person's symptoms, such as joint stiffness or dry skin, and also on a person's mood. 

Learning to live with Sjögren's is learning what your body's new normal is- this includes taking care of both your physical and emotional symptoms.  

Recently the Foundation has received a lot of questions about this topic and since some of the best tips the Foundation knows have come from patients, we want to hear from you!

winter blues party
  • What cold weather problems do you find the most difficult when managing your Sjögren's and how do you deal with them effectively?
     
  • When the winter blues hit, how do you manage to say positive when also coping with Sjögren's?
     
  • What advice would you give to a fellow patient dealing with the depression?
     

Just as one tip may work well for one patient but not another, you will need to discover what tips and coping strategies work best for your body. That is why tips and suggestions of all kinds are welcome and encouraged as a way to help fellow Sjögren’s patients.

Please comment below and share with us what you would suggest.

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Topics: Depression, Symptoms, Sjogren's, Joint Pain, Fatigue, Dry Skin, coping with sjogren's

Today, This is My Life with Sjogren's... AND I LOVE IT!

Posted on Fri, Aug 09, 2013

The following is post from a guest blogger, Richard a male SSF Support Group Leader in Idaho. We asked Richard to write about what he does to successfully cope with Sjögren’s.  

No, not the Sjögren’s, my life silly, and I believe in living it well and fully. I am a Sjogrenite, a father, a friend, a volunteer, master (or slave) to my yellow lab, a Harley rider, a hunter/sport shooter, a country swing dancer, a fisherman, a Vandal (University of Idaho’s mascot), a neighbor and am proud of all of these. But most of all, I’m proud to say that I live my life the way I want to even after having been diagnosed with SS (Sjögren’s Syndrome) 12 years ago. When something challenges me, my thought is "bring it on!" I’ll find a way to meet and, and perhaps, even beat you in a positive way.

So how do you do this when you hurt unbearably some days, wonder when nasty little “occurrences” of a myriad of new symptoms will ever cease, and are just plain tired of SS’s poop? I don’t know how you do it, but here is how I do.

Richard and Mitchell Bliss 3

First of all, I acknowledge that “today is the healthiest I’ll ever be”. Now that is a mental attitude that I must adopt because it is TRUE! However, with that said, how can I make the symptoms and my attitude the best?

I’ve decided that I need to be positive about my disease or I’ll never feel good physically or emotionally. I give myself a 20 minute window to be “pissy” (on the occasion that I have those feelings) about my hurts, issues, lack of energy, lost ability to mentally associate things, lack of full mobility, etc. I don’t like being around folks who are always negative and grouchy, so why would I want to be one of those? So that’s it, I start thinking about the things and people I really enjoy and appreciate, then my time is up! Most importantly, I think “why would I want to waste even a half a day of my life?” The answer is simple, I don’t and I won’t. There are way too few left at this age and if I were younger, I’d still feel that way.

Exercise is a VERY important part of my life. All literature regarding chronic illnesses and/or aging illustrates this point with an explanation of how it helps us immensely. So how do I get around the pain, etc.? I set my alarm for 5:15am three days a week and go to the local YMCA to do a workout in the pool that works on my entire body. The workout is 50 minutes long. Doing exercises in a pool is a lot easier on the joints and muscles. Plus, I treat my aches to 10 minutes in the Jacuzzi when I finish. I really dislike getting up that early most mornings along with the discomfort, okay- pain, but it's not about my likes, it's about my body’s needs and my future. I also do a workout at home 2-3 days a week in between the pool visits. I stretch, use lighter weights, elastic bands and the floor. I do all this not because it feels “good,” but because I know that it helps my body and because I can control my mind, at least in that regard- where it goes some days when I need it most, I have no idea.

I also believe in having fun and laughing. The world and my mind are my playground. I still do most things I did before all the various SS effects came storming my way about 8 years ago. Granted, I don’t do them the same way- I have modified them to fit my capabilities today. And I keep adjusting them year to year as my symptoms change (worsen). That means I still have the joy of participating in them, rather than being sour that I can’t “climb that hill anymore” (literally and metaphorically). I’ve helped my family and friends to understand a bit about these effects of SS so that they can enjoy time with me and vice versa.

I believe in teaching and inspiring as we go through life. And the way we live with SS is the “Professor” in all of us.

• Do we understand that we are not the only ones who suffer because of our condition?
• Do we see that our loved ones and friends no longer have us the way they were used to?

We are not as eager to get up and go or we simply cannot do some particular physical or mental activity anymore, or at least, not in the same manner. It is important that I recognize this so I can help them understand. This helps us create alternatives so we can still enjoy special times together in whatever we do. It is also very important to me that I be a positive person while we engage in these wonderful times together.

I have always had the attitude “Why Not Me?” I don’t think I’m special in any way that should exempt me from having a disease. Someone has to have them, if for statistical purposes only! I’ve shared with my sons that perhaps I was chosen because I am a very tough and strong willed person. Maybe I can handle it, or learn to, better than others. Whatever the reason, I have it and I’m okay with that.

A younger lady doctor, who was one of my most ardent advocates, convinced me to use pain medication when necessary, which was something I was quite opposed to. She was a saint for spending so much time with me regarding all my health issues including the pain. Being in extreme pain frequently is one of the toughest things we face. Oh how we cherish those days when the stars align in our favor and we have a day, or even a few, when we wonder if our SS is getting better. Sjögren’s doesn’t give us too much time to contemplate this crazy notion before it thumps us on the forehead and awakens us from that dream. I now use pain medication when I really need it and during times when I can feel symptoms coming on that would have put me down for a while. I have accepted that for me these meds are viable and can help me salvage more quality time. And I love having time just like everyone else!

It is important for me to be active in the things I like and enjoy. This gives me a chance to use and try to preserve what’s left of my mind and memory. Teaching and supporting others are two of those. I volunteer with organizations and the SSF that allow me to do so. It is very good for my mental attitude to be engaged in activities that can help others. I truly enjoy being a part of these. So I guess it is somewhat selfish too. And selfish is okay with me, we have to acknowledge that we all have special “things” we must do for ourselves. Sometimes they may seem simple to others, but just sitting or lying down a couple times a day is difficult for us to do. Why? Well for me it is related to my upbringing and age. We just went all day until bedtime because there was always something that needed to be done and you didn’t take a break until it was accomplished.

Having SS means we need to change the rules that fit us prior to that time. We need to give ourselves permission to do the things that can assist us. In addition to taking real breaks, I try to see my massage therapist as often as I can afford it. I believe massage is one of the most beneficial treatments for my body, mind and soul. Although I’m not certain how I know this since I usually fall asleep between the more painful spots!

George Strait, the country singer (I’m a Westerner, so I like country music) has a song entitled: “Here For A Good Time.” It speaks very closely to my way of living my life.

I’m not gonna lay around and whine and moan
Because somebody done done me wrong
Don't think for a minute that I'm gonna sit around
And sing some old sad song
I believe it's half full not a half empty glass
Every day I wake up knowing it could be my last
I ain't here for a long time
I'm here for a good time
So bring on the sunshine
To hell with the red wine
Pour me some moonshine
When I'm gone put it in stone
He left nothing behind
I ain't here for a long time
I'm here for a good time
Folks are always dreamin' bout what they'd like to do
But I like to do just what I like
I'll take the chance, dance the dance
It might be wrong but then again it might be right
There's no way of knowing what tomorrow brings
Life's too short to waste it
I say bring on anything.
I ain't here for a long time
I'm here for a good time
So bring on the sunshine
To hell with the red wine
Pour me some moonshine
When I'm gone put it in stone
He left nothing behind
I ain't here for a long time
I'm here for a good time
I ain't here for a long time
I'm here for a good time

Maybe they will put on my stone: “He had Sjögren’s and he left nothing behind.” Yep, I’m a Sjogrenite and so much more. I'm proud of the fact that it will never beat me!

-Richard 
Meridian, Idaho

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Topics: Depression, Sjogren's, coping with sjogren's, Advocacy, Men with Sjogren's

Depression and Sjogren’s

Posted on Fri, Jun 21, 2013

describe the imageQ. Is depression common among Sjögren’s patients?

A. Depression is a mood disorder with symptoms ranging from feelings of excessive sadness, increased irritability, sleeplessness or excessive sleep, fatigue, impaired ability to concentrate, loss of appetite, loss of interest in once-enjoyed activities and loss of sexual drive to feelings of hopelessness and thoughts of suicide. Not all people who feel “depressed” have clinical depression, and not all people with clinical depression feel “depressed.”

Faced with a diagnosis of a chronic disease of unknown cause with an often variable and unpredictable course, patients can react with fear, anxiety and depression. As with many other chronic diseases, Sjögren’s syndrome (SS) patients report feeling depressed more frequently than do healthy individuals in the general population. In one study, 32% of SS patients reported “possible” clinical depression, which was significantly more frequent than in healthy age-matched female controls.

Symptoms of depression such as fatigue, altered sleep, a change in appetite, loss of interest and mood changes can be seen in medical conditions that can also be associated with Sjögren’s. These include anemia, thyroid disease and fibromyalgia syndrome. Treatment of these conditions can correct the symptoms that might otherwise be attributed to “depression.”

Fatigue is very common in patients with SS. Although fatigue is more frequently observed in SS patients with depression than SS patients without depression, most SS patients with fatigue are not depressed. Fatigue, as noted above, can be caused by anemia or thyroid disease but it might also be caused by Sjögren’s itself and as such may respond to treatment of SS.

After medical conditions that can mimic symptoms of depression are ruled out, traditional treatment of depression with support, counseling, psychotherapy and anti-depressant medications is effective in SS patients. If you think you might be depressed, remember that you are not alone and the feelings you are experiencing can be reversed. It is important that you speak with your doctor so that your symptoms can be evaluated and the proper treatment can be prescribed for you.

-Neil I. Stahl, MD
This article was first published in The Moisture Seekers, the SSF monthly member newsletter

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Topics: Depression, Sjogren's, coping with sjogren's

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