Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Yoga and Sjögren's: There's a pose for that!

Posted on Thu, Sep 12, 2019

As finding alternatives to overall wellness, mind and body, continue to evolve in present day, many holistic health techniques have stood the test of time, proving to offer benefits that heal the body from the inside out. Yoga is one of these holistic healers. Many centuries ago, when yoga was said to be created, ancient peoples made yoga their daily routine to treat and ward off disease and to become peaceful in the mind. The body would react to this practice over- time, ceasing illness and spiritual negativity from the body. As I continue on my journey into offering yoga for therapeutic purposes as a registered yoga teacher, I witness what these ancient yogis were onto. Yoga is a practice that benefits the body in many ways. Different yoga poses promote healing for different body parts. Here are some poses that have exponential benefits:

Energize & Open Your Heart with Camel Pose

Sanskrit Name: Ustrasana

Boost your energy and open your heart with camel pose. This pose is known for eliminating the
feeling of sluggishness or fatigue and promoting energy through the body while creating more oxygen
to the brain. Come to your knees on the floor with knees hip-distance apart. Allow your toes to untuck and stabilize through the legs. Bring your hands to your lower back with palms facing in and finger tips facing down. Push the pelvis forward to create space for the spine to keep alignment. Inhale and lift your heart higher by letting the shoulder blades relax down the back. Exhale and allow your back to release down, energy through the crown of the head as you lean back. Let your neck relax, tensing up here will be counteractive. Breathe deeply for 5 to 10 breaths or until you find comfort in the pose. Inhale to slowly rise back up to a straight spine. Release with a few trunk twists or any movement that will feel good to your body after this pose.

Take a Chill Pill & Relieve Anxiety with Bridge Pose

Sankrit Name: Setu Bandha Sarvangasana

Feeling anxious and nervous about something? Alleviate stress, worry, and anxiety with bridge pose, a beginner’s inversion.

Lie flat on your back with knees bent parallel, feet flat on the ground, arms down by your sides. On your inhale, rise your pelvis toward the sky and keep pushing down through the feet and hands to balance the weight. Take this a step further by placing a block or study pillow under the back to stay with your pelvis elevated. Stay here for about 5 breath cycles. On a slow exhale, lower back down slowly to your mat and repeat.

Ease S.I. Joint Discomfort with Triangle Pose

Sanskirt Name: Trikonosana 

Experiencing aches and pains in your lower back area? It could be something deeper caused by your sacroiliac joint, the pelvis joint formed by the sacrum and ilium. Its main function is to manage stability and weight transfer. While many experience this pain, so few actually know it
is connected with their sacroiliac joint. Visiting a chiropractor if you are unsure is highly recommended, however, spending some time on your yoga mat may be the best way to relieve the pain. Standing poses, like Triangle Pose (Trikonosana), can increase strength in the glutes and rotator muscles, which help support the S.I. joint.

Stand up against a wall and step feet apart with a wide stance, feet should be wider than shoulder-width and toes facing forward. Turn your left toes to face
the side, so that your left foot is now parallel against the wall. Press into both feet, pull up in the knees, and keep the legs straight. Push into the right hip and bring the arms into a T, with finger tips reaching away. Begin to reach your left hand down toward your toes, 
and continue to bring your right arm up and back. Continue to reach until the shoulders are stacked vertically and you reach your shin, toes, or the ground inside your left foot. Engage your core and try to keep your bottom from touching the wall without leaning forward. Breathe deeply 5 to 10 breath cycles. Inhale to rise back up to standing. Reverse the feet and re-peat on other side.

About the Author

Lee-Ann has a deep–rooted, therapeutic connection with yoga, and aspires to create opportunities for others that foster personal growth and well-being. She completed her RYT 200 at Bombay Yoga Company in 2016 and teaches at Mellow Yoga Studio in Philadelphia, PA. Lee-Ann recently created Two Hearts Dance & Yoga.

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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Topics: Sjogren's, Joint Pain, Fatigue, coping with sjogren's, Chronic Pain, Flare,, Natural Treatments, Yoga

15 Types of Sjögren’s Fatigue

Posted on Thu, Jan 03, 2019

Fatigue

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

  1. Basic fatigue: This is the inherent fatigue that I attribute to the inflammatory, autoimmune nature of Sjögren’s. It's with me all the time. It differs from normal fatigue in that you don't have to do anything to deserve it. It can vary from day to day but is always there. For me, there appears to be a correlation between this kind of fatigue and sed rate (ESR). When one goes up, so does the other. I don’t know how often this phenomenon occurs. I could also call this my baseline fatigue, which fluctuates and gets better or worse. All of the following are superimposed on this basic fatigue.

  2. Rebound fatigue: If I push myself too far and ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e., do too much one day and feel it the next. If I push myself today, I very likely will have to cancel everything tomorrow. An extended period of doing more than I should will almost certainly cause a flare.

  3. Sudden fatigue: This 'crumple and fold' phenomenon makes me resemble a piece of laundry. It comes on suddenly, and I have to stop whatever I'm doing and just sit down (as soon as I can). It can happen anywhere, at any time. It is the kind of fatigue that makes me shut off the computer in mid-sentence. It is visible to those who are observant and know what to look for, even though I make gargantuan efforts to disguise the fact that it is happening.

  4. Weather related fatigue: Not everyone has this particular talent, but I can tell that the barometric pressure is dropping while the sky remains blue and cloudless. I feel a sweeping wave, a malaise, that sometimes lifts just after the rain or snow has started. Likewise, I know when a weather front is moving away, even while torrents of water are falling from the sky. I feel a lightening in my body and begin to have more energy. This kind of fatigue is accompanied by an increase in muscle aches and joint pain.

  5. Molten lead phenomenon: This fatigue is present when I open my eyes in the morning and know that it is going to be a particularly bad day. It feels as if someone has poured molten lead in my head and on all my limbs while I slept. My muscles and joints hurt and doing anything is like walking with heavy weights. It is often associated with increased symptoms of fibromyalgia and sometimes helped by heat and massage.

  6. Tired-wired: Tired-wired is a feeling that comes from certain medications, such as prednisone, too much caffeine, or too much excitement or perhaps it is just a function of Sjögren’s. My body is tired, but my mind wants to keep gong and won’t let my body rest.

  7. Flare-related fatigue: Flare-related fatigue is an unpredictable state of increased fatigue that can last for days or weeks. It may be caused by an increase in disease activity or an undetected infection. If the latter, it either resolves on its own, or eventually presents other signs and symptoms that can be diagnosed. Additional rest is essential to deal with this kind of fatigue, but rest alone will not necessarily improve it or make it go away. Once a flare begins, it is impossible to predict where it will go or how long it will last.

  8. Fatigue related to other physical causes: Fatigue related to other physical causes, such as thyroid problems or anemia or other diseases superimposed on Sjögren’s. This kind of fatigue makes you feel that you are climbing a steep hill when you are really walking on level ground. It may resolve once the underlying organic condition is diagnosed and treated. Thyroid problems and anemia are both common among Sjögren’s patients, but many other kinds of fatigue may be superimposed. Sjögren’s and fibromyalgia often co-exist, such that it is difficult to separate one from the other.

  9. Fatigue impairs concentration: Fatigue impairs concentration, precludes thought, and makes me too tired to talk, think or read. Fatigue robs me of memory and encloses me in a fog of cotton wool so thick I can't find my way out until the fog miraculously lifts. For me, brain fog goes hand-in-hand with other kinds of pernicious fatigue.

  10. Stress, distress, anxiety or depression: Stress, distress, anxiety or depression all can create a leaden kind of emotional fatigue that can be as exhausting as one due to physical causes. Although some people do not associate their increased fatigue with emotional states, many are aware of the effects of increased anxiety and depression, even if they cannot control what they feel. Intense emotion is very draining. Stress, anxiety and depression all are known to disrupt sleep.

  11. Fatigue that comes from not sleeping well: Some people with Sjögren’s have trouble both getting to sleep and staying asleep. Some wake up in the morning feeling as if they had never slept at all. Many aspects of Sjögren’s affect sleep: being too dry, in too much pain or malaise; multiple trips to the bathroom, the need for water or to put in eye ointment all deter a good sleep. Lack of restorative sleep increases fatigue. Fibromyalgia worsens when you don’t get a good night’s sleep. Chronic pain increases fatigue.

  12. Fatigue that comes with normal aging: I’m old enough for Medicare now and my friends are more tired too, although they seem to be able to do two or three or even four times what I can do on any given day. In fact, the gap between what they can do and what I can do just seems to be growing, despite my best efforts. It’s been a long time since I tried to keep up, but it still hurts that I can’t.

  13. Fatigue that comes from a chronic illness that just won’t quit: We’ve all heard the expression “sick and tired of being sick and tired” and that phrase truly captures what many of us feel. I would take it one step further. There’s a fatigue that comes with the uncertainty of a chronic disease. It’s a debilitating fatigue born of never knowing what will come next. The chronicity of Sjögren’s can wear me down and I have to make special attempts not to let it. When these attempts don’t work, I wait a while and try to find something else that distracts me from my illness.

    And two new ones:

  14. 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.

  15. 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.

September TMS-1"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 September Issue of The Moisture Seekers. Suggested reading: The Sjögren’s Syndrome Survival Guide, by Terri Rumpf, PhD, author of the "15 Types of Fatigue" article, and Katherine Moreland Hammitt, SSF Vice President of Medical & Scientific Affairs, this SSF best seller is often referred to as a “support group in a book."

Click here to view a sample issue of the newsletter.  If you’re not already a member of the SSF, please considering joining and providing the Foundation with 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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Topics: Depression, Brain Fog, Fatigue, Flare,, #ThisIsSjögrens, Fibromyalgia, Sjögren’s

Patients Sharing with Patients: Holiday Tips

Posted on Mon, Nov 30, 2015

SSF_Holiday_Blog.jpg

The holidays can be a very happy and joyous time reuniting with family and friends, but it can also be a very stressful time, especially when living with a chronic disease like Sjögren's. 

Holiday stresses and winter weather can have a negative effect on a person's symptoms and living with Sjögren's means learning what your new normal is. This is why it's particularly important during the busy holiday season to make sure you listen to your body and do not neglect your mental or physical health. 

The SSF knows that some of the best tips come from patients, which is why we want to hear from you about how you cope with additional stresses and symptoms during this time of year. 

  • How do you manage fatigue with a busy holiday schedule?
  • What is your best tip to make holiday traveling easier?  
  • What advice would you give to a fellow patient dealing with the depression during the holidays?
  • How do you explain Sjögren's and what symptoms you're dealing with to family & friends?
  • What cold weather problem do you find the most difficult when managing your Sjögren's (such as a Raynauds flarenasal drynessdry skin or other symptom) and how do you effectively cope? 

Just as one product may work well for one patient but not another, you will need to discover what coping techniques works best for you. Please comment below and share your suggestions.

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On behalf of the SSF family, we wish you a healthy and joyous holiday season! 

Topics: Depression, Dry Nose, Fatigue, Dry Skin, Top 5 Tips, Dry Nails, coping with sjogren's, Flare,

The Sun & Sjögren’s: How to protect yourself

Posted on Tue, Jun 30, 2015

Sjögren’s patients, and those suffering from autoimmune disease in general, need to be cautious about their time in the sun. Ultraviolet (UV) radiation emitted from the sun and other light sources (such as some fluorescent lights) can alter immune function and lead to an autoimmune response in the body and skin.

In response to the sun, Sjögren’s patients can experience skin rashesocular sensitivity, pain, and disease flares. Sun sensitivity with Sjögren’s is associated with the autoantibody SSA/or Ro. Below are a few tips to help protect yourself this summer and year-round. 

  • Protect your skin and eyes through use of sunscreen, UV-protective lenses/sunglasses, ultraviolet light-protective clothing, hats, and non-fluorescent lighting. Sun-protective clothing is designed to protect your skin from UVA & UVB rays and is more reliable than sunscreen.
  • SSF_Sun_and_Sjogrens_TipsConsider purchasing UV-protective car and home window tinting and films (which come in clear.)
  • Wear sunscreen on areas not covered by sun-protective clothing, such as the neck and ears.
  • Read sunscreen labels and look for the words “broad spectrum,” which protects from both UVA & UVB light. Note that the SPF ratings refer only to UVB rays. 
  • Use plenty of sunscreen with a higher number SPF. Most people only use about 1/3 the recommended amount of sunscreen. This reduces the benefit of the SPF rating.
  • Remember to reapply sunscreen because water, humidity and sweating decrease sunscreen effectiveness.
  • Investigate whether UV-protective clothing and eyewear, window shields, and sunscreens are eligible for reimbursement under your insurance plan or Flexible Health Care Spending Account. 

The SSF would like to thank Mona Z. Mofid, MD, FAAD, for authoring this information that was first published in The Moisture Seekers, SSF's member newsletter, and as an SSF Patient Education Sheet.

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Topics: sun and sjogren's, Symptoms, Sjogren's, Dry Skin, Top 5 Tips, Makeup Tips, Chronic Pain, Flare,, Ocular Pain, Skin Rashes

What is a Sjogren's Flare?

Posted on Thu, Mar 12, 2015

What is it? How is it treated? Can you avoid it? 

Medical dictionaries define “flare” as a sudden exacerbation of a disease. A flare is different from the day-to- day variation of symptoms that patients with chronic diseases experience and is characterized as a large and rapid increase in a patient’s usual symptoms. I like to define a flare as a sudden and significant increase in the activity of a disease. This definition allows us to use quantitative measures of disease activity to compare levels of disease activity from one point in time (e.g. baseline) to another (e.g. flare). 

2015_SSF_Body_ImageSeveral measures of disease activity have been developed for Sjögren’s. The two most promising are the European League Against Rheumatism Sjögren’s Syndrome Disease Activity Index (ESSDAI) and the European League Against Rheumatism Sjögren’s Syndrome Patient Reported Index (ESSPRI). The first is a tool that measures disease activity from the physician’s perspective in the many organs and systems affected by Sjögren’s.

The second measures disease activity from the patient’s perspective and includes a patient’s global assessment of disease and individual measures of dryness, pain, and fatigue. These surveys have been developed to consistently evaluate disease activity in research settings such as clinical trials. Nevertheless, they could be used in clinical practice as guidelines for evaluating disease activity in the office or clinic. The ESSPRI is a simple tool that could be used in the clinic, much like the use of the Health Assessment Questionnaire (HAQ) in patients with rheumatoid arthritis and other rheumatic diseases.

When patients say they are experiencing a flare, they usually mean that they are experiencing a marked increase in their Sjögren’s symptoms such as dryness of their eyes and/ or mouth, joint and muscle pain, and fatigue. Other symptoms might include swollen glands, skin rashes, or numbness and weakness in extremities. Physicians must make sure that these symptoms and signs are in fact a flare of the Sjögren’s and are not caused by other conditions that are not associated with Sjögren’s. These include infection, anemia, thyroid disease, drug side effects and fibromyalgia syndrome, to mention a few. 

Since there is no specific treatment for Sjögren’s at present, treatment is symptomatic and dependent upon which organ system is involved. There are several things you can do to lessen the likelihood of getting a flare. Keep taking the medications prescribed for you on a regular, daily basis. Eat a healthy diet, exercise regularly and get restorative sleep. Try to minimize physical and emotional stress and develop good coping mechanisms when stress is unavoidable. Hydroxychloroquine has been shown to lower disease activity in systemic lupus erythematosus and may be similarly helpful in Sjögren’s. Your physician also might recommend other medications to improve your symptoms.

-Neil I. Stahl, MD, FACR

This article was first published in The Moisture Seekers, SSF's member newsletter.

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Topics: Diet, Sjogren's, Joint Pain, Fatigue, Treatment, coping with sjogren's, Flare,

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,

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