Below are some common names used to describe WED/RLS symptoms. Fidgety Legs Jumpies The Gotta Moves Wiggles Wheeby Geebees Tortured Limbs ...
September 23 is WED/RLS Awareness Day. Let's raise awareness during the month of September. You can help raise awareness of Willis-Ekb...
- Become a WED Foundation member (https://www.willis-ekbom.org/join-the-wed-foundation).
- Get a friend to like us on Facebook (https://www.facebook.com/pages/Willis-Ekbom-Disease-Foundation).
- Visit the blog (email@example.com) and comment on a guest blogger post.
- Write a blog post on WED/RLS on your own personal blog page.
- Sign up for our monthly Efriends (https://www.willis-ekbom.org/member-login).
- Take the new diagnostic tool survey on our website (http://www.willis-ekbom.org/wed-rls-diagnostic-tool).
- Make a gift in honor or memory of someone special to the WED Foundation (https://www.willis-ekbom.org/donate-today).
- Purchase a WED/RLS awareness pin (https://www.willis-ekbom.org/about-the-foundation/store).
- Purchase a WED/RLS Wordle canvas print to display in your home or work place.
- Contact your local newspaper’s health editor, and ask him/her to write a piece about Willis-Ekbom diease/restless legs syndrome (WED/RLS).
- Share your WED/RLS story with your Facebook friends.
- Change your Facebook Timeline Cover Photo to reflect WED/RLS. See Foundation’s Facebook page for a cover photo.
- Write a letter to the editor to your local newspaper or TV station.
- Tweet about the WED Foundation during Awareness Month (September).
- Text your friends the WED Foundation’s website (www.willis-ekbom.org).
- Join the discussion board (http://bb.rls.org/).
- Send WED/RLS information, including old editions of NightWalkers, to your doctor’s office so other patients may benefit.
- Be a guest blogger at firstname.lastname@example.org by writing a personal story or creating an art image to share with the WED/RLS community. Submit your story to email@example.com and title the email Guest Blogger Request.
- Request a free WED/RLS awareness bracelet and wear it the month of September. Email us at firstname.lastname@example.org and title the email Awareness Bracelet Request.
- Offer old issues of your Nightwalkers to your local library for their magazine rack.
- Create your own WED/RLS fundraiser on https://givemn.org/.
- Email or mail us contact information of five (5) friends or family members to give them a free trial membership with the Foundation. Email us at email@example.com and title the email Trial Membership Requests.
- Purchase and wear an apparel item from the WED Foundation to the local mall, park, hospital or community event.
- Have your city put WED/RLS Awareness Day on the community calendar.
- Design and create your own WED/RLS awareness t-shirt or tote bag to wear or carry around the month of September.
- Ask your neighbors to leave their porch lights on overnight on September 23 to support the nightwalkers in your community.
- Attend a WED/RLS support group meeting or reach out to a local volunteer. See upcoming meetings at http://willis-ekbom.org/connect-with-others/upcomingmeetings.
- Ask your work place to hold a “wear jeans or slippers to work” on a Friday (or designated day) to collect donations from those that participate.
- Hold a small fundraising event in your community to spread awareness of WED/RLS and raise money to support the Foundation’s mission.
- Download, print and post WED/RLS posters in your community (schools, church, grocery stores, library, community centers and other billboard areas).
- Call a friend or family member with WED/RLS to find out how they are doing.
- Make and submit a WED/RLS awareness video.
- Give the gift of WED Foundation Membership to family and friends.
- Join in a free WED Foundation webinar.
- Ask a friend or family member to join in on a foundation webinar.
- Write a post on your Facebook account using the words WED/RLS Awareness day in your post on September 23rd.
- Become a Support Group Leader or Contact.
- Recommend to your WED/RLS healthcare provider that they become a member of our HCP Online Directory.
- Host a, “Stomp out WED/RLS” jump rope party for school aged children to bring awareness of the disease in children and adolescents.
- Ask local or national sports teams to announce or list on the jumbotron that today is WED/RLS Awareness Day
Help spread awareness by displaying a Wordle canvas. Go to the Foundation's online store to purchase one today. You may al...
Disclaimer : Guest blog posts are the opinions of the authors only and not of the WED Foundation, its employees or its Board of Directors....
I went to a neurologist who did all kinds of testing. My neurologist said the WED/RLS looked primary and prescribed a dopamine agonist drug. I began reading so much online about sufferers who had augmented on the dopamine agonist drugs. Other sufferers wrote about very troublesome side-effects. I had a bad reaction a few years earlier when I took statins, and was very reluctant to take another powerful drug.
So I researched online and found a drug called kratom. It’s the leaf of a tropical plant in southeast Asia. Wikipedia describes it like this: “Kratom behaves as a μ-opioid receptor agonist like morphine and is used in the management of chronic pain, as well as recreationally.”
So I researched.
I found that not only was it not FDA approved, the FDA had labeled it a drug of concern. But it was legal, and everything I found online indicated it was safe. Apparently, it does not depress breathing, like a regular opioid does. It is also hard to overdose on it, as you have to take so much that you become nauseous first and throw-up. There were a couple of cases of teenagers who had mixed it with other drugs, and one died. But, no matter how hard I looked, I couldn’t find any cases of anyone who had died just from kratom. This, of course, distinguishes it from prescription opiods.
So I decided to try it. I didn’t look at it as a good option, but it seemed a less-bad option than the dopamine agonist drugs, which I really did not want to take. At this point, WED/RLS had severely impacted my quality of life. I found kratom widely available on the internet, even on Amazon.com, and began ordering the powdered leaf.
It’s been over a year now. I take kratom daily and it has given me my life back. The strand I use—and that which at least one other WED/RLS sufferer I know uses—is the red leaf Borneo strain. I make up a dose by letting a gram of kratom sit in a cup of orange juice for twenty minutes, so it dissolves. Then I drink it. Usually, over 24 hours, I’ll take four or five doses. I also have a capsule-filling device I got on Amazon, and will make up capsules to keep in my purse or take with my when I travel.
In addition to the kratom, I take a good variety of vitamins and minerals. The only other thing I take that might be helping as well is L-theanine.
Last month I flew comfortably from Newark to Honolulu—a thirteen hour flight. I had one little period of mild discomfort when I woke up from a nap, but fixed that by simply walking to the restroom. I took a bit more kratom than usual for this trip—maybe as much as ten grams, from the time I left the house until we landed. I usually get six, and sometimes seven, hours of sleep every night. I usually wake up twice—since kratom hasn’t produced time-released leaves yet—and take another dose, and then perhaps walk around for five or ten minutes and then go back to sleep.
For a while, I took the maeng da strain. It made me constipated. After I switched to the red leaf Borneo, and started taking some extra magnesium, the constipation cleared up. The only side effect I notice now is that I get a headache if I don’t drink enough water. I’ve discovered you need to drink a good deal of water while taking kratom.
Kratom doesn’t make me sleepy or nauseous. It manages both the hyper-alert feeling as well as the creepy/crawly feeling of WED/RLS. I don’t feel high at all; in fact, I just feel normal, probably because I don’t take enough to feel high. With the low dose I take, I can drive and do everything that I normally do.
So far, I haven’t seemed to develop any tolerance for the drug and am taking about the same dose I started with over a year ago. But, as we all know, the disease is a moving target, and I expect as it worsens I’ll have to start taking a bit more. So far, all is really good.
I hope my story can help others.