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13 Types of Sjogren's Fatigue

 

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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30 Ways You Can Increase Sjogren’s Awareness this April!

 

217061 196364960401609 6479975 nYou are the voice of the Sjögren’s Syndrome Foundation and the reason for its existence.  April is Sjögren’s Awareness Month and we want to help by giving you 30 ways to increase awareness through a different Sjögren’s fact or tip every day on our Facebook and Twitter pages. 

Awareness comes in many forms and we encourage you to follow us for the next 30 days and look for opportunities to talk about Sjögren’s and the SSF in your life.  You can help make Sjögren’s a household name!

#TipTuesday: Talking about your disease can help reduce the anxiety associated with a chronic illness, but the SSF knows how difficult that can be when friends, family and some physicians can’t even pronounce Sjögren’s (SHOWgrins).  With an estimated 4 million Americans living with Sjögren’s, do the people in your life know how to pronounce it?

Please share this with your family and friends to help raise awareness of Sjögren’s this April! 

Click Here to Receive our Newsletter by Becoming an SSF Member

An Advocacy Victory!

 


The Sjögren’s Syndrome Foundation (SSF) is proud to be a member of the National Coalition of Autoimmune Patient Groups (NCAPG) and join with similar organizations to represent the voice of our members and all Sjögren’s patients.

This past Friday, the SSF stepped up to support the American Autoimmune Related Diseases Association (AARDA) and other coalitions that petitioned the Centers for Medicare & Medicaid Services (CMS) proposal to discontinue the inclusion of all immunosuppressants as a required drug category under Medicare Part D formularies.The SSF submitted its own comments as well to the CMS about the proposal.

Today we are happy to announce that the Administration will not finalize at this time ANY of the changes it had proposed to the Six Protected Classes policy in its Part D proposed rule issued in January of this year!

As a nonprofit organization representing the 4 million Americans who suffer from Sjögren’s, the second most common rheumatic/autoimmune disease, the SSF believes it is crucial that access to life-saving and life-altering care not to be impeded in any way.

Because Sjögren’s patients often present as complex cases, with no two patients being exactly alike and tend to have multiple autoimmune disorders that contribute to the complexity of management and treatment, patients and their physicians together need to be free to decide which therapies are best suited for each patient specifically. Though the SSF appreciated the fact that CMS wanted to improve quality and costs for patient care, we believe the best way to do so is to ensure critical access to care and let the protected class status remain for immunosuppressants in Medicare Part D.

The SSF wants to thank all of our members as your support allows us advocate on behalf of all patients! We are excited that our combined efforts paid off and millions of Medicare beneficiaries will continue to have greater health care options and access to their vital medications.

Click Here to view the Medicare Proposed Changes

Click Here to view a copy of the CMS Letter to Senator Kay Hagan on the Proposed Medicare Advantage and Part D Rule

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We LOVE our Friends!

 

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Today, the SSF wants to Sjö how much we appreciate you and your support by giving away complimentary registrations to three people for the 2014 SSF National Patient Conference "Solving the Sjögren’s Puzzle" April 25-26, 2014 at the Hyatt Regency O’Hare, (Rosemont, Illinois).

 

Congratulations to our winners: Carlie, Evon & Ray!

The winners have all been notified personally by the SSF and thank you all for the support!


Entering is easy! 

To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2014. The Foundation will privately email the three winners on Tuesday, February 18, 2014. Winners will be picked at random and the registrations are only transferable through family members, which means your family can comment below to give you an extra chance at winning! Please email us at info@sjogrens.org with any questions.

Presentation Topics Include:

        • Overview of Sjögren's Syndrome 
        • Pulmonary Issues and Sjögren’s
        • Dry Eye / Dry Mouth and Sjögren’s 
        • What is in the Clinical Trial Pipeline?
        • Gastrointestinal Issues and Sjögren’s
        • Clinical Practice Guidelines Overview
        • Nutrition, Wellness and Autoimmune Disease
        • Overlapping Major Connective Tissue Diseases
PHOTO   Mary McDonough   Auntiemaryblack3 2

We are delighted to have Mary McDonough as our 2014 Keynote Speaker – you won’t want to miss this informative and moving presentation!

  View the 2014 SSF National Patient Conference Brochure

What is Sjögren’s Syndrome?

 

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. 

Please join with us!

Click Here to Become an SSF Member

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

 

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.

  Take Control of Your Health! Receive our Newsletter by Becoming an SSF Member

Fatigue Fighters in Sjögren’s

 
Fatigue

Fatigue is one of the most prevalent and disabling symptoms of Sjögren’s. Here are the Sjögren's Syndrome Foundation's top 5 tips that can help you cope:

  1. Know your limits and pace yourself. Plan to do no more than one activity on your bad days. Try to do more on your good days, but don’t overdo it!
     
  2. Turn your friends and family into a support system by educating them about what you are going through and how Sjögren’s fatigue can come and go. Then, ask them to be prepared to do one or two chores for you on your fatigue days. Give them specific instructions in advance and be reasonable with your expectations.
     
  3. Get your body moving every day! This may help not only your fatigue but also your chronic pain, poor sleep and depression. Start with five minutes of aerobic exercise daily (e.g. walking, biking, running, elliptical, treadmill) and increase the duration by an additional two-to-three minutes each month up to a maximum of 25 minutes daily. If you have a heart or lung condition, consult your doctor first.
     
  4. Listen to your body and plan to take a 20-minute time-out every few hours to help you get through your day.
     
  5. Work with your doctor to find a treatment for your fatigue by identifiying a specific cause that may be adding to your symptoms. The possibilities may include systemic inflammation, poor sleep, fibromyalgia, depression, hypothyroidism, muscle inflammation or side-effects of medications.

Share with us below what you’ve found the most helpful when managing your Sjögren’s fatigue.

Learn Sjogren\u0026#39\u003Bs Coping Tips From a PatientDownload the SSF Self\u002DHelp Booklet  

Support Sjogren's This Holiday Season

 

As with any year-end non-profit donation, the age-old questions still exist - “where do my donations go?” and “what impact will they make?”  As CEO of the Sjögren's Syndrome Foundation (SSF), I take great pride in being able to answer those questions by sharing with you the many accomplishments that have been achieved by the SSF thanks to the generosity of our donors. 

s taylor headshot

This year, I am excited that we have, once again, seen amazing progress made in the fight against Sjögren’s.  Just this past month, as you may have heard, Oklahoma Medical Research Foundation completed the first genome-wide study of Sjögren’s where six Sjögren’s genes were identified.  This is the first-time that potential genes have been connected to Sjögren’s and surely gives hope for future researchers to investigate causes, progressions and treatments at the Sjögren’s genetic level. Most exciting, is that this research was completed by two SSF Research Grantees, Dr. Kathy Moser Sivils and Dr. Christopher Lessard.  Their research grants were funded by your generous contributions to the SSF and, once again, show that your donations are having a direct impact on Sjögren’s research and, specifically, this big breakthrough in Sjögren's.

That is why I appeal to you today to renew your support with a generous tax-deductible year-end gift.  Your support will allow the SSF to continue funding life-changing Sjögren’s research while also helping to further the SSF’s efforts to better the lives of those living with Sjögren's.

I also am proud to share a few additional milestones achieved this past year thanks to your support.  The SSF:                                            

  • Awarded six (6) Innovative Research Grants and three (3) Student Fellowships.
  • Continued work on the first ever Clinical Practice Guidelines for how to treat, manage and monitor Sjögren's by receiving support from the American College of Rheumatology, American Dental Association and American Journal of Ophthalmology to present a draft for endorsement and publication.
  • Held our annual National Patient Conference in Bethesda, Maryland with over 450 attendees and presentations from the country’s leading Sjögren's experts.
  • Assisted with the Restoring Access to Medication Act (S. 1647), bipartisan legislation, recently introduced to the Senate in November 2013.  This work was the continuation of my testifying before the House Committee on Ways and Means about the expense and difficulty with treating Sjögren’s with over-the-counter medication.
  • Increased our awareness efforts by adding 130 Awareness Ambassadors (now 463 nationwide) who volunteer their time to increase Sjögren's awareness in local communities across the United States.

These are just a few of the things we accomplished in 2013 and, as you can see, your donations truly are impacting our efforts and the lives of Sjögren's patients. We are truly grateful to have such dedicated members, volunteers, event participants and donors that serve as the driving force behind all we do.  I ask you to consider making a year-end gift so we can continue our efforts for all Sjögren’s patients in 2014 and beyond. Thank you in advance for your support and generosity and I wish you and your family a happy and healthy New Year.

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With sincere appreciation,

 describe the image

Steven Taylor
Chief Executive Officer

SSF Holidays Survival Patient Education Sheet Collection

 

bells

We hope you find this collection of SSF Patient Education Sheets helpful.

Especially during the busy holiday season, it’s important to make sure you listen to your body and do not neglect your health.

 And when finishing your on-line shopping this Holiday season, remember to "Shop for Sjögren's!" 

ShoppingShopping on-line is now an easy way to contribute to Sjögren's!

The Sjögren's Syndrome Foundation has partnered with on-line retailers who will donate a portion of the value of your purchase to the SSF. This year, purchase all of your holiday gifts, while also giving back to Sjögren's.

Some of our partners include:

Click here to view all our retail partners

Senate Introduces New Over-The-Counter Bill

 

CongressThe Sjögren’s Syndrome Foundation, SSF, is pleased to announce that the long-awaited over-the-counter (OTC) bill, Restoring Access to Medication Act, is expected to be introduced today in the U.S. Senate by Senators Pat Roberts (R-KS) and Mary Landrieu (D-LA). This is an important piece of legislation to the SSF because Sjögren’s patients largely depend on these medications and products to treat their disease. A similar bill was introduced in the House of Representatives this summer (HR 2835).

The SSF has been working on getting OTC medical expenses covered, once again, in flexible spending arrangements (FSAs) and health saving accounts (HAS) plans so patients do not have to obtain a prescription, which places a significant strain on both patients and their healthcare providers.

Philippe Nobile Photography

In April 2012, Steven Taylor, SSF CEO, testified before the Subcommittee on Oversight of the House Committee on Ways and Means hearing about how the law’s current limitations on OTC medications impacts Sjögren’s patients.

“The cost is untenable for patients and their families, as OTC treatments are not covered by insurance, are not tax deductible and are no longer even covered under Health Saving plans without obtaining a prescription. With so many OTC products needed for treatment, having to go to a physician or dentist for a prescription for each and every one presents an undue burden,” said Taylor.

In June 2012, the U.S. House of Representatives passed the Health Care Cost Act under the Affordable Care Act that included a provision in the legislation repealing limitations on the purchase of OTC medications.

The SSF serves on many coalitions to ensure that Sjögren’s patients are not forgotten in the healthcare debate, which is why we are proud to be a part of the Health Choices Coalition (HCC) supporting this bill’s introduction in the Senate. Contact your Senators to let them know you want them to support the “Restoring Access to Medication Act!” You can find your Senator by going to www.senate.gov.

View Statement from the Health Choices Coalition

View Press Release from the Consumer Healthcare Products Association (CHPA)

***UPDATE 11.06.2013***

Yesterday afternoon, Senators Roberts and Landrieu introduced the Restoring Access to Medication Act (S. 1647) with the following original cosponsors: Senators Heller, Inhofe, Isakson, and Johanns. The Sjögren’s Syndrome Foundation will work with our fellow Health Choices Coalition partners to build momentum for this legislative effort.

Secretary Lew was quoted as saying the announcement "underscores the administration's continuing efforts to provide added flexibility and common sense solutions to how people pay for their health care." We agree that reinstating reimbursement for over-the-counter medicines without a prescription is certainly a common sense solution!

Remember to contact your Senators to let them know you want them to support the “Restoring Access to Medication Act.” You can find your Senator by going to www.senate.gov.

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