Tuesday, September 25, 2012

Let's Review, Shall We?

Yeah. NICE layer of dust on the entertainment center after being away for two weeks. Ask me if I care.....pffffft. 

As I'm in the midst of recharging my energy batteries, I'm reminded of the frustration and difficulties that most sjoggies deal with when trying to address their problems with fatigue.

(And dumb stupid fatigue stinks. Just my humble opinion. For whatever it's worth....)

So I thought that it may be a good time to review this excellent Sjogren's Syndrome Foundation fact sheet regarding fatigue:

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 atwww.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.

You can also read it here. I'm going back to bed. Nighty-night.


Brigid Rauch said...

Thank you, thank you THANK YOU! I woke up at 4Am with a sore spot under my tongue. Thanks to the link you posted on how to massage salivary glands, i knew what to do and after a few minutes felt a gush of saliva and the pain was gone!

Julia Oleinik said...

I'm so glad that you could get relief. The Sjogren's Syndrome Foundation published that publication as well as several that are extremely useful! See my sidebar for a list of others.