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

Living with Chronic Illness: Intimacy & Sjögren’s

Posted on Mon, Aug 01, 2016


handholding_SSF.jpgLiving with a chronic illness, like Sjögren’s, can have physical and emotional affects on a woman's sexuality. However, even with the presence of Sjögren’s, women and their partners can enjoy sexual activity and maintain a state of sexual well being. Be open with your partner about your needs and work together for satisfying intimacy.

Below are the three main reasons of how Sjögren’s can affect a woman's sexuality and tips to help.

Vaginal dryness. Women with Sjögren’s often experience severe vaginal dryness.

  • Vaginal moisturizers are available for daily use and lubricants can be used during intercourse.
  • Vaginal estrogen (hormones) may be right for some women.

Pain. Pelvic pain and pain during intercourse, can have many causes, including Sjögren’s, pudendal neuropathy, and interstitial cystitis. 

  • See your health care provider for an evaluation of why you have pelvic pain. There may not be an “easy” answer, but in many cases a possible cause can be identified and treated.
  • Treating vaginal dryness may improve some pelvic pain. 

Fatigue & mood symptoms. Fatigue, chronic pain and depression can contribute to the daily challenge of living with a chronic illness and affect sexual desire and function.

  • Tell your health care provider if you are feeling depressed. Treating depression may help to improve problems with sexual function.
  • Take care of your Sjögren’s and make time for yourself and things you enjoy. 

This information is from the SSF Patient Education Sheet: Sex and Sjögren’s by Anne E. Burke, MD, MPH

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Topics: Depression, Sjogren's, Fatigue, coping with sjogren's, Vaginal Dryness, Pelvic pain, Interstitial cystitis

Ask the Expert: Plaquenil and Sjögren’s

Posted on Mon, May 23, 2016

Question_and_Answer-1.jpgWhat is Plaquenil and what are its benefits for Sjögren’s patients?

Plaquenil (hydroxychloroquine) is a medication that has been used for many years to help musculoskeletal symptoms and fatigue in patients with autoimmune conditions such as rheumatoid arthritis, lupus and Sjögren’s. While there is good clinical evidence demonstrating the drug’s efficacy in rheumatoid arthritis and lupus, there are very few studies looking at hydroxychloroquine as a treatment for Sjögren’s. The studies that do exist show mixed results (some show benefit and some show no benefit) in whether or not the drug is effective in helping with pain, fatigue, dry eyes or dry mouth.

Nonetheless, despite the lack of clinical studies, rheumatologists feel that hydroxychloroquine may have a potential beneficial effect in helping patients with symptoms of fatigue and achiness, which are common complaints in patients with Sjögren’s.

TMS.pngHow the drug works is unclear, but recent research has pointed to an inhibitory effect on toll-like receptors that are proteins involved with inflammation. The good news is that hydroxychloroquine targets the immune system without causing an increase in the risk of infection or cancer that can be seen with other immunosuppressant medications. The typical dose for hydroxychloroquine is 200-400mg per day and is based on a person’s body weight (or if you are overweight, your ideal body weight). While hydroxychloroquine is considered a relatively safe medication, like all medications there are potential risks. These include body rashes that often will itch. The rash typically occurs in the first 6 weeks and is usually mild. In general, the rash will resolve within 2 weeks after stopping the drug. A more severe rash affecting larger areas of the body may occur but is not common. If this type of rash occurs, other medications such as anti-histamines and steroids may be required to help with symptoms.

Over time, hydroxychloroquine may uncommonly have an adverse effect on the retina that can lead to permanent visual damage if not picked up early. In order to protect the eyes, a baseline exam is recommended be- fore starting the drug if you are color blind, have prior retinal problems or have never had a dilated exam (checking color vision is one way the doctor monitors for early damage) or within the first 6-12 months if you have a history of healthy eyes and a recent retinal examination. After the baseline exam, it is recommended that patients get a dilated exam at the minimum of once per year. Retinal problems are more likely to occur after 5 years of use. Newer technologies are available (OCT-optical coherence tomography) that can pick up early changes. If early changes are found on exam, it would be uncommon to have progression of eye toxicity or visual changes.

Other potential side effects include but are not limited to nausea, changes in mood, muscle weakness, skin pigmentation and anemia. While the drug may be used during pregnancy, the potential benefits and risks should be discussed with your doctor.

In summary, if you have Sjögren’s, hydroxychloroquine may be an option to help your symptoms. Because there are other more effective therapies available to treat dry eyes and dry mouth, it is typically prescribed to help musculoskeletal pain and fatigue. Be patient, as the drug may take up to 6 months to see a beneficial effect.

by Scott Zashin, MD Internist & Rheumatologist in Dallas, TX

This information was first printed in The Moisture Seeker, SSF's patient 
newsletter for members.

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Topics: Plaquenil, Dry Eyes, Sjogren's, Fatigue, Treatment, coping with sjogren's, Immunosuppressant, Ask the Expert

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.

Click me

 

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,

Ask the Eye Doctor: Why do my dry eyes hurt in the morning?

Posted on Wed, Sep 30, 2015

Q) Why do dry eyes feel awful in the morning when I first wake up, especially if I don’t use an eye lubricant at night?

Dr. Stephen Cohen

A) There are certain conditions that can get worse during the night with the eye in a closed state. For example, if you have blepharitis, which is caused by a common skin bacteria called “staph epidermidis,” the waste products of the staph are very irritating. But with your eye closed that staph toxin is lying there all night. If I have a patient who wakes up with really irritated eyes, one of the first things I want to look at is untreated blepharitis.

Another possible cause is called “recurrent corneal erosion.” Think about pulling a scab off all the time. It starts to heal and you pull the scab off. If the surface of the eye gets irritated through dryness and adherence to the back of the lid, or through an injury, that tissue needs to heal. The good news is it heals very quickly. The bad news is it hurts a lot as I’m sure you’ve found. So it heals quickly but it doesn’t necessarily anchor itself. That thin, outer layer of the cornea doesn’t anchor itself to the eye very fast, so you run the risk of re- irritating your eye even after you are feeling better. And when you do that over-and-over, it is called “recurrent corneal erosion.” You are basically tearing off the outer layer of the front of your eye. Classic sign is you wake up, you open your eyes and it hurts. Using ointments at night helps. Using an antibiotic ointment would help if you have blepharitis as well because it would treat that and give your eye a little more coating.

Dry Eye Tip!
If you have severe dry eyes and trouble opening your eyes in the morning because your lid is sticking, try to keep your eyes closed when you wake up and use the heels of your hands to gently massage your lids. What this will do is break any of those adhesions that may be there and it stimulates a little tear production so that you can actually open up your eye safely. But if you wake up and open up your eyes right away, you run the risk of – ouch – pulling that adhesion off, again, like pulling a scab off of a wound.

-Stephen Cohen, OD from his talk on Dry Eye at the SSF National Patient Conference

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Topics: Dry Eyes, Sjogren's, Joint Pain, Fatigue, Treatment, Blepharitis

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,

Living with Chronic Pain

Posted on Thu, Oct 16, 2014

describe the imageIt is not unusual for some illnesses involving chronic pain to take years to find an accurate diagnosis. Patients may see a dozen or more doctors while seeking help, answers and relief. Some may have multiple medical appointments in the span of just one week. They may see different specialists for different symptoms, as if body parts function independently of one another. The patient may be on many medications, coping with side effects that can be brutal, and too many of these services focus on what the patient cannot do with little or no attention paid to what they can do. The very process can leave the patient feeling more helpless, more depressed, more fatigued, more stressed. How frustrating must it be to have the very things you do to get better and regain control of your life make you worse?

If you or someone you know is one of these patients, here are some tried-and-true ideas you may find helpful:

  • First, do not settle for bad medicine. Acknowledging that these cases do not fit well into today’s quick medical model, if you do not feel heard or helped, find another doctor. If that doctor does not meet your needs, find another doctor. Bear in mind that cheapest in the short run may end up being the most expensive long term if you are not getting good results. There are many good, skilled and caring doctors, but it may take some time to find the right one for you. The physician who is willing to be your partner and your educator and treat you with dignity and respect is the right choice for you.
     
  • Be your own advocate. No one knows your body better than you. No one knows your pain better than you. No one knows what makes you happy better than you. You are the expert on you.
     
  • Resist buying into the idea that our medical system is so broken good treatment is not available. I will never debate the idea that the system is broken. I will debate the idea that good treatments are not available. It may require defining and redefining what constitutes “good treatment” as you figure out what works best for you, but you will know it when you find it.
     
  • Just because a treatment may be considered “holistic” does not mean it does not have value. Just because something is approved by your insurance company does not mean it does have value. Neither comes with any guarantee and both should be met with healthy skepticism. Leaving any positive option out of the mix is a missed opportunity.
     
  • Remember to pay as much attention to your mental health as you do your physical health. The mind-body connection is real and plays a major role in combating any illness.
     
  • Consider limiting the number of medical appointments you have in one week, if at all possible. Too much focus on what ails you can bring down the best mood and invite in the boogeyman at 3am with dark thoughts that never helped anyone. Too many appointments also can eat up time that would have been available for a yoga class, a trip to the gym, or lunch with a good friend. Balance is important.
     
  • I know you’ve heard this one before: You are what you eat. A deprivation diet is not necessary or helpful or sustainable, but a healthy diet filled with a rainbow of foods that are good for all of us are even more important for those with special needs. Consider including a qualified nutritionist in your treatment team. Click here to view SSF suggested nutritional resource available for purchase, "The Immune System Recovery Plan"
     
  • Take a relationship inventory. If you have people around you who drag you down, who think they know what is best for you better than you and your doctors, or who may even question the reality of your illness, it’s time to clean house. The drain of toxic people and toxic relationships sucks away energy better used in creating your best possible life.
     
  • Whatever you love doing, do it - and then, do it again!

This article by Darlene Cross, MS, MFT, was first printed in the March 2013 issue of The Moisture Seeker, SSF's patient newsletter for SSF members.

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Topics: Diet, Symptoms, Sjogren's, Fatigue, Treatment, coping with sjogren's, Chronic Pain

Sjogren's Vs. Sicca Syndrome

Posted on Thu, Aug 21, 2014

Sicca is a word derived from the Latin siccus, meaning “dry.” Dryness of the exocrine glands, particularly the eyes and mouth, is referred to as “sicca syndrome” or “sicca complex” when there is no evidence of autoimmune disease present.  While sicca symptoms occur in the vast majority of Sjögren’s patients, not everyone with these symptoms has Sjögren’s. Because of this, it is important to establish an autoimmune cause for the dryness.  Sometimes other causes may be found, such as radiation therapy to the head, certain medications, or Hepatitis C or HIV infections. If no cause is found, the patient should be followed carefully for possible Sjögren’s because it sometimes takes years for the diagnosis to become clear. 

tms cover 2014 April

Dryness from Sjögren’s may affect any organ in the body that secretes moisture. In addition to changing the quantity and quality of saliva and tears, dryness may manifest in the airways, nasal passages, sinuses, throat, skin, and in women, the vagina. Some Sjögren’s patients initially present with recurrent sinus infections, severe vaginal dryness, chronic dry cough, and so on. All types of specialists, not just eye doctors and dentists, need to keep Sjögren’s in mind as a diagnostic possibility, especially when dryness is severe, persistent, or accompanied by systemic symptoms such as fatigue and widespread muscle and joint pain. Dryness can be quite serious, causing dental disease, eye pain and even visual impairment.  However, these issues should not detract from the often missed point that Sjögren’s is much more than sicca syndrome.  Sjögren’s is a serious systemic autoimmune disease that can affect almost any organ in the body. 

-Sarah Schafer, MD

This information was first printed in the April issue of The Moisture Seeker, SSF's patient newsletter for members. 

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Topics: Diagnosing Sjogren's, Dry Nose, Sinuses, Sicca, Dry Mouth, Dry Eyes, Symptoms, Sjogren's, Fatigue, Vaginal Dryness, Chronic Cough

Tips for Muscle and Joint Pain in Sjögren’s

Posted on Tue, May 13, 2014

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Joint and muscle pain in Sjogren’s syndrome may result from a variety of causes including inflammation, fibromyalgia, age-related osteoarthritis, vitamin D deficiency, hypothyroidism etc.

Work with your rheumatologist to identify the specific cause(s) of your pain and find the best treatment regimen for you. Maintain a positive attitude and be an active partner in the management of your pain.
The tips below will also help:

  • Become knowledgeable about your medications
  • Get a good night’s sleep
    • Maintain a regular sleep schedule.
    • Set aside an hour before bedtime for relaxation. Listen to soothing music.
  • Consider taking a warm bath before going to bed
    • Make your bedroom as quiet and comfortable as possible.
    • Avoid caffeine and alcohol late in the day.
    • Avoid long naps during the day.
  • Exercise regularly with the goals of improving your overall fitness and keeping your joints moving, the muscles around your joints strong and your bones strong and healthy
    • A physical therapist, occupational therapist, or your health-care provider can prescribe an exercise regimen appropriate for your joint or muscle problem.
    • Start with a few exercises and slowly add more.
    • Make your exercise program enjoyable. Do it with your spouse or a friend. Include recreational activities, such as dancing, walkingand miniature golf.
    • Try different forms of exercise, such as Tai chi, yoga and water aerobics.
  • Balance rest and activity
    • Pace yourself during the day, alternating heavy and light activities and taking short breaks to rest.
  • Control your weight
  • Protect your joints and muscles
    • Use proper methods for bending, lifting, and reaching.
    • Use assisting devices, such as jar openers, reach extenders and kitchen and garden tools with large rubber grips that put less stress on affected joints.
  • Use various therapeutic modalities that can relieve joint and muscle pain
    • Use heat (heating pads, warm shower or bath, paraffin wax) to relax your muscles and relieve joint stiffness.
    • Use cold packs to numb sore joints and muscles and reduce inflammation and swelling of a joint
    • Consider massage therapy.
    • Practice relaxation techniques, such as guided imagery, prayer and self-hypnosis. 
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Thank you Alan Baer, MD for these tips. Dr. Baer is an Associate Professor of Medicine, Director, Jerome L. Green Sjogren’s Center, Johns Hopkins University School of Medicine

Topics: Nutrition, Symptoms, Sjogren's, Joint Pain, Fatigue, Treatment, Top 5 Tips, coping with sjogren's, Chronic Pain

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,

What is Sjögren’s?

Posted on Fri, Feb 07, 2014

Sjögren’s (pronounced SHOW-grins) is a chronic autoimmune inflammatory disease in which people’s white blood cells attack their moisture-producing glands, significantly decreasing the quantity and quality of saliva and tearsThe disease was first identified by a Swedish physician, Henrik Sjögren, in 1933.

Although the hallmark symptoms are dry eyes, dry mouth, fatigue and joint pain, Sjögren’s may cause dysfunction of other organs, affecting the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the nervous system. Patients also have a higher risk of developing lymphoma. 

Today, as many as four million Americans are living with this disease. Learn more about Sjögren's and the Sjögren’s Syndrome Foundation in this short video:

Watch Steven Taylor, SSF CEO, talk more about the Foundation and the work being done to fulfill our mission of helping patients cope with their Sjögren's, increase awareness, and support research, in this ten question interview:

The SSF exists only because of its members and supporters.

By adding your voice to the fight against Sjögren’s and becoming a member, you are helping to strengthen our organization. When bound together, these voices help the SSF when we advocate for new treatments, new coverage for health insurance and when talking to companies about supporting the SSF.

With each member, the SSF voice will get stronger and we will finally make Sjögren’s a household name. 

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Topics: Dry Mouth, Dry Eyes, Symptoms, Sjogren's, Joint Pain, Fatigue, Advocacy

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