Wednesday, August 10, 2011

Sjogren's Syndrome Foundation Patient Education Sheet: Fatigue



The Sjogren's Syndrome Foundation has several excellent patient education sheets available to it's members. Take a minute to review this one, focusing on fatigue. I was gratified to see that the opening sentence gave emphasis on the significance of fatigue in Sjs. If you have significant others, co-workers, or friends that don't understand how profoundly fatigue can impact a sjoggie, suggest that they read this and  any other of the extremely well done SSF patient education sheets found on my sidebar and at the Sjogren's Syndrome Foundation website. 


Patient Education Sheet:
 Fatigue Fighters in Sjögren’s Syndrome
The SSF thanks Frederick Vivino, MD, FACR, University of Pennsylvania, Penn Rheumatology Associates & Sjögren’s Syndrome Center, Philadelphia, for authoring this Patient Education Sheet.



Fatigue is one of the most prevalent and disabling symptoms of Sjögren’s syndrome. Here are some tips that can help you cope with the problem:
  • Work with your doctor to find a specific cause and treatment for your fatigue. The possibilities may include systemic inflammation, poor sleep, fibromyalgia, depression, hypothyroidism, muscle inflammation or side-effects of medications.
  • 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!
  • Listen to your body and plan to take a 20-minute time-out every few hours to help you get through your day.
  • Educate your friends and family about what you are going through and how the fatigue in Sjögren’s syndrome can come and go.
  • Develop a support system to help you with tasks. Ask friends and family members 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.
  • Get at least eight hours of sleep every night. If you wake up at night, plan extra time for sleep.
  • 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.
  • If you are still employed, ask your employer for accommodations because you have a medical condition. Try to work from home if possible to gain more flexibility with your work routine. Check the following resources (search “chronic fatigue”) to get more information on work accommodations and/or career options: Disability and Business Technical Assistance Center at www.dbtac.vcu.edu and Job Accommodation Network at www.jan.wvu.edu.
  • Identify the major stressors in your life and work with a mental health professional or your support system to minimize their impact.

For more information on Sjögren’s syndrome, visit the SSF Web site at www.sjogrens.org, call 800-475-6473, e-mail ssf@sjogrens.org or write to the Sjögren’s Syndrome Foundation, 6707 Democracy Blvd, Suite 325, Bethesda, MD 20817.

Clinicians: Please make multiple copies of this Patient Education Sheet and distribute to your patients. If you have an idea for a topic or want to author a Patient Education Sheet, contact us at sq@sjogrens.org.

8 comments:

Anonymous said...

I think I will print this sheet and send it to the doctor who told me that "fatigue is not a symptom of Sjogren".
Thanks Julia.

Anonymous said...

I think I will print this sheet and send it to the doctor who told me that "fatigue is not a symptom of Sjogren".
Thanks Julia.

Sunset in Paradise said...

Amen to this bullet point--"Know your limits and pace yourself...don’t overdo it!"

I have been in overdrive for a couple of weeks and all of a sudden fatigue has begun to set in. Time to back off and take things a little slower.

Thanks for reminding me of this Patient Education Sheet.

Anonymous said...

Great sheet! :)

Rose said...

There is no need to go through life feeling tired and out of energy all the time, or carrying extra weight caused by your thyroid, because desiccated bovine supplement is effective in helping relieve these thyroid related problems.

Maxy20 said...

While I struggle with daily fatigue and am taking Nuvigil to help me get through the day, I am interested in finding someone, anyone who experiences fatigue flares. Mine are dibillitating and are spent in bed. The last flare ended in March after 2&1/2 months. I am unable to care for myself,I cannot keep my eyelids open alot of the time. I do not read or watch tv during these flares. I just lay there waiting for it to end. Even after three days of IV steroids and oral steroids, it continues. This is a big chunk of life to lose and I am now in the stage of trying not to worry about when it will come again. I know that it will, it's been happening for the past four years. Has ANYONE experienced this extremely severe type of fayigue???

Anonymous said...

Yes, I sure know what it is like having my life ruled by such debilitating fatigue. Oh, how I just want to take care of my home. Wash my dishes, etc. It's like I have lost who I was. No energy feels like no self.

Anonymous said...

Yes, I know what it is to be so fatigued that you need to ask for help and your life stops. I had surgery 4.5 months ago and I can't break out of the fatigue. I feel trapped by it.

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