Restless Legs Syndrome Foundation Blog

Ten Ways to Raise RLS Awareness During September

RLS is still not widely understood and awareness remains one of our primary goals at the RLS Foundation. With your help, we hope to spread awareness about what RLS is, and to let the public know that information and support are available through the RLS Foundation and our volunteer support network.

This year we are launching our #MakeADifference4RLS challenge. On the cover of the Summer 2018 edition of NightWalkers is our Awareness Day image and we encourage you to take part in the challenge. To participate, take a picture of you and the cover of NightWalkers doing an activity to spread awareness and email it to clara@rls.org. If you do so before September 23, you will receive a FREE RLS awareness magnet!

Here are some suggestions to get you started, we look forward to hearing what YOU do to get the word out!

1. Take a selfie or make a short video clip with your own RLS awareness message. Post it on Facebook, Twitter, YouTube or Instagram – and ask your kids, grandkids and friends to do the same! Use the hashtags #MakeADifference4RLS.
2. Write a letter to the editor of your local newspaper or TV station about your experience with RLS. You can also be a guest blogger for the RLS Foundation – email info@rls.org to learn more.
3. Share our YouTube videoswith your local newspaper, radio and TV media.
4. Show your support! Whether an RLS Foundation T-shirt, an RLS magnet on your car, or a hand- written “RLS Awareness Day” sign, you can catch eyes and start conversations to help spread the word. For more ideas, visit www.rls.org/shop to access the RLS Foundation’s online store - Everything is 25% off during September!
5. Share copies of Nightwalkers with your local library, doctor’s office, assisted living facility, church or other community gathering place.
6. Ask a friend or family member to join you in watching a free RLS Foundation webinar – visit the Member Portal on www.rls.org to access our webinar library.
7. Make the RLS Awareness Day image your Facebook profile picture.
8. Give the gift of an RLS Foundation membership to family, friends and your physician or “pay it forward” by donating a scholarship membership to someone needing assistance with membership, visit www.rls.org/pay-it-forward or call 512-366-9109.
9. Share what you are doing on Awareness Day with a post to Facebook tagged #MakeADifference4RLS.
10. Share information about our upcoming RLS physician webinar series beginning in October 2018 with your healthcare providers – refer them to www.rls.org/PhysicianEd.

Thank you to everyone who has participated in RLS Awareness Day activities so far - let's get creative and let's get going!

Appropriate Use of Opioids to Treat RLS

About 1 in 33 Americans – 3 percent of the US population – have RLS that is severe enough that they need treatment with medications. Unfortunately, treatment options are limited and do not provide life-long coverage. Dopamine agonist medications (pramipexole, ropinirole and rotigotine patch) can actually make the disease worse over time – an effect called augmentation. Alpha-2-delta agents (gabapentin, pregabalin and gabapentin enacarbil) are effective for only 70 percent of RLS patients and can have serious side effects such as suicidal thoughts.

Opioids are an established, highly effective treatment option for people with severe RLS when other therapies have failed. These medications bring dramatic relief to an estimated 90–95 percent of RLS patients. Clinical experience among experts has not shown the degree of drug misuse, dependency or addiction that is commonly associated with opioid use to treat chronic pain, which has a different underlying biology from RLS.

Clinical guidelines published in Mayo Clinic Proceedings are available for clinicians to appropriately prescribe opioids for RLS, assess patients for risk of addiction, and monitor use over time. The RLS Foundation actively conducts educational outreach to help ensure that healthcare providers know how to diagnose and treat RLS, including treatment with opioid therapy.

Learn More About RLS Treatment Options

If you are struggling to control your RLS symptoms, consult with your healthcare provider about which treatment options may be right for you. A good resource to share with your provider is the RLS Medical Bulletin, available in the Member Portal at www.rls.org.

If you are looking for an RLS healthcare provider, visit www.rls.org or contact the RLS Foundation at info@rls.org for information about RLS Quality Care Centers and other providers knowledgeable about RLS.