RLS Discussion Board Moderator - Now Recruiting Volunteers!

Join the RLS Foundation volunteer network

The RLS Foundation is seeking volunteers to join our dedicated team of discussion board moderators! The RLS discussion board is a forum where individuals can post questions and discussion topics, connect with other individuals and provide virtual support: http://bb.rls.org/. If you enjoy online communication, offering encouraging and supportive messages to fellow community members and bringing awareness to RLS Foundation resources, this role might be a good fit for you! If you are interested in learning more about this volunteer position or the application process, please email elyse@rls.org. You can fill out the volunteer application by clicking here.

Responsibilities of discussion board moderators:

• Function as part of a team of moderators with shared responsibilities (currently, we have a team of four discussion board moderators).
• Monitor and respond to new threads to maintain active engagement and ensure all new posts receive a welcoming and supportive reply.
• Provide thoughtful, empathetic and supportive responses without providing medical advice.
• Process new discussion board registrations.
• Handle emails from individuals who may require assistance creating an account, logging in or finding their username and password.
• Regularly monitor the email provided to you by the RLS Foundation. This email will be posted publicly in NightWalkers and on the website.
• Respect and maintain the confidentiality of all users by keeping any personal information shared strictly within the forum.
• Understand and uphold Foundation policies on acceptable forum participants and appropriate content.
• Always remind participants that it is best to consult a qualified medical provider before making any changes to their RLS treatment plan.
• Promote RLS Foundation membership, resources and events.

Relevant Skills:

• Strong written communication skills. Use concise and supportive language.
• A deep understanding of RLS, its impact and challenges faced by those living with RLS.
• Familiarity with RLS Foundation resources and membership.
• Experience with technology, troubleshooting basic tech issues and operating the computer programs administrative control system (training provided).

Time Commitment:

We are looking for a long-term volunteer dedicated to helping the RLS community. This role typically requires 2-3 hours per week.

Benefits:

• Complimentary RLS Foundation membership during your time as a volunteer.
• Joining a network of RLS Foundation support volunteers.
• Annual training provided by the RLS Foundation.

If you are interested in learning more about this role, please email elyse@rls.org. You can access the volunteer application by clicking here.

A Wonderful Place to Be

Submitted by: Ann Battenfield, discussion board moderator for the RLS Foundation

It is 3:10 AM. I wanted to go to sleep hours ago. I wonder what went wrong. I am relatively sure I took my medication correctly, but for some reason the sensations and urge to move are reluctant to stop. As they are all too many nights. Some nights I would be pacing; I am lucky tonight and can sit and type. So I head to my favorite place on such nights.

When I was a child, no one would sleep with me. It was a family joke that my bed looked as if a tornado hit it; every morning sheets were pulled out, covers on the floor, and I often was asleep upside down or with my legs dangling over the edge when someone would awaken me. As an early teen, I joined the jumpy leg club that included several family members. Some people learn how to play golf or knit from their grandparents; I learned how to use sewing machine legs when you had to be seated or how to punch my legs with my fist to apply counter stimulation.

I watched my grandmother struggle with her symptoms and medications; I vowed to use non-pharmaceutical options, distraction, and counter stimulation. Yet when I couldn't work anymore and was unable to remember nouns because of the cumulative effect of missing sleep, I finally caved.

I was put on pramipexole to treat the PLMs; my RLS was very mild and did not need any treatment. Soon, though, I had daily RLS. The neurologist kept increasing the pramipexole, I kept getting earlier RLS. For a year, this went on until I did not sleep more than an hour or so a night and the RLS was 24/7. One October, while searching about RLS online, I found the RLS Foundation's newly created Discussion Board. The members welcomed me warmly and I instantly felt better – other people were in a similar situation. Other people were getting help. Other people had uninformed doctors, too.

I read every post on the Discussion Board over the next few weeks, learning as much as I could. Through one of the posts, I found a link to the Southern California Support Group site and to the pages and pages of emails sent to Dr. Mark Buchfuhrer along with his answers. I emailed him immediately and told him about my symptoms. He responded the next day and I finally knew what was wrong. I had augmentation.

On the Discussion Board, I learned the RLS Foundation was hosting the first ever RLS conference; I booked a ticket immediately. I kept reading posts and conversing with others on the Discussion Board. I logged in every day, sometimes two to three times. I went to the conference and I met Drs. Richard Allen, Christopher Earley, David Rye and others, as well as several members of the Discussion Board. I learned of a way to resolve augmentation through the information and support of those wonderful people who were suffering as much or more. I found a way to make the RLS more manageable.

Twelve years later I still log into the Discussion Board every day, sometimes two or three times. Some of the people who were there to welcome me are still members and stop by occasionally. Thousands of others have joined. I have made many friends and hope that I have been paying it forward, as others did with me so long ago. On nights such as tonight, coming to the Discussion Board is like coming home. A home where people support me, where accurate information is available, and where I can sometimes help others with compassion, understanding, and by listening. At 3 AM, that is a wonderful place to be.

You Are Not Alone

An Online Community Available 24/7

With the stress that the holidays can bring, it's a comfort to know that you are not alone in your struggles with RLS. The RLS Foundation's discussion board provides an avenue for individuals to post anonymously about their symptoms, treatments and other coping strategies. It is a supportive, hopeful environment for those who are looking to share their RLS stories with others who know exactly what they're going through.

The discussion board is run by five Foundation volunteers who serve as moderators. Topic areas currently include:

Physical Treatments
Non-drug therapies (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc.

Non-prescription Medicines, Supplements, Diet
Substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances.

Prescription Medications
Prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Topic of the Year: Augmentation
The topic of the year 2015 for the RLS Foundation is Augmentation. Use this forum to discuss any issues associated with Augmentation

Special Populations: Pediatric, Pregnancy, Secondary, etc.
RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. RLS in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.

Help for Relationships
Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?

General Topics
For everything and anything else not covered in the other RLS/WED sections.

Everything Else... Just No RLS!
It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.

To get started, learn more about the simple, free registration here. Questions or concerns? Contact the discussion board moderators at rlsfmods@rlsgroups.org.

Remember posts and information on the discussion board are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.