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

Fatigue Fighters in Sjögren’s

Posted on Thu, Jan 16, 2014

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.

Take Control of Your Sjogren's Download the SSF Self-Help Booklet 

Topics: Symptoms, Sjogren's, Fatigue, Top 5 Tips, coping with sjogren's

SSF Holidays Survival Patient Education Sheet Collection

Posted on Fri, Dec 13, 2013

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Dry Nose, Brain Fog, Diet, Symptoms, Sjogren's, Fatigue, Treatment, Top 5 Tips, coping with sjogren's, Chronic Pain

Top 5 Tips for Dry Nose and Sinuses

Posted on Thu, May 09, 2013

Patients with Sjögren’s frequently suffer from decreased mucus/nasal secretions and dryness of the nose and sinuses. Here are the Sjögren's Syndrome Foundation's top 5 tips for treating your Dry Nose & Sinuses:

describe the image
  1. Try a bedroom humidifier, which generally comes in two types. While more expensive, a self-sterilizing unit is ideal in that it continuously sterilizes and cleans the steam prior to admitting it into the air. A more modestly-priced humidifier is adequate but must be cleaned at least twice a week to limit the possibility of circulating fungus in the air. For a Sjögren's patient, an optimal range of humidity is between 55-60% regardless of the ambient temperature.

  2. Enjoy high humidity environments, such as a steam bath, although remember that hot and long baths can dry out the skin.

  3. Avoid medications that increase dryness when possible. Many medications used to treat the upper respiratory tract such as decongestants and antihistamines are drying. Many other medication classes also may contribute to nasal/ sinus drying. When in doubt, check with your physician!

  4. Consider using over-the-counter (OTC) emollients such as Ponaris® to cleanse the nose, particularly if large crusts and debris are present. Also, use OTC nasal drops and buffered saline sprays regularly (as often as every hour) to lubricate the nasal passages and nasopharyns. Additionally, OTC gels such as Rhinaris® and AYR® work like sprays but last longer and are recommended particularly at night prior to going to sleep.

  5. Discuss the prescription medications Salagen® and Evoxac® with your physician. These have been shown to help Sjogren's patients with dry mouth, and potential added benefits for dry nose, sinuses and nasopharynx should be considered.

Share with us below what tips you’ve found the most helpful when treating symptoms associated with dry nose and sinuses.

Topics: Dry Nose, Sinuses, Symptoms, Sjogren's, Top 5 Tips

Patients Sharing with Patients: Makeup and Skin Care Tips

Posted on Tue, Jan 22, 2013

Sjögren's is a systemic disease with its symptoms felt throughout the entire body. While dry skin, dry nails and dry hair are not among the serious manifestations of Sjögren's, they are prevalent in many patients’ lives.

Learning to live with Sjögren's is learning what your body's new normal is- including what type of daily skin products and makeup one uses. 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!

describe the image

  • What makeup and skin care products have you found that work well with your Sjögren's?

  • What type of shampoo would you recommend?

  • As a male patient, what aftershave or face moisturizer do you use?

  • Is there a nail polish that works best for you?

Just as one type of eye drop may work well for one patient but not another, you will need to discover what works best for your body.

Please comment below and share with us what you would suggest.

 

Click me

Topics: Sjogren's, Top 5 Tips, Makeup Tips, coping with sjogren's

Top 5 Tips for Treating Dry Eye

Posted on Fri, Oct 05, 2012

  • eye dropsTry ointments or gels at bedtime by first applying them only to the eyelids and lashes. If that is not helpful, place ~1/4 inch of ointment between the lower lid and eyeball. Because it blurs their vision, some individuals may not like using it.

  • If you are bothered by light, wear sunglasses or try lenses with a FL-41 filter.

  • Apply a warm, wet compress to the closed eyes using a washcloth heated in tolerably warm water from the sink or shower. Apply at bedtime and upon awakening for 5 minutes or more often if desired.

  • When starting a new, preservative-free artificial tear, use the drops every 1-2 hours for at least two weeks before reducing frequency of use. When you taper their use, see if your symptoms worsen. It often is easier to determine feeling worse than better.

  • Use non-preserved artificial tears frequently and regularly, even when your eyes feel good. Don’t wait until your eyes are uncomfortable.

Click here to see more tips for treating dry eye

Share with us below what tips you’ve found the most helpful when treating dry eye.

Topics: Dry Eyes, Sjogren's, Treatment, Top 5 Tips

Subscribe via E-mail

For reprint permission requests, please contact us at info@sjogrens.org.

Donate Today!

Donate to Research

Follow Me

Latest Posts

Posts by category

Some additional information in one line