Restless Legs Syndrome Foundation Blog

Twenty years with WED/RLS

Disclaimer: Guest blog posts are the opinions of the authors only and not of the WED Foundation, its employees or its Board of Directors. Publication on the WED Foundation’s blog does not imply endorsement by the WED Foundation. Therapies and results described reflect the experiences of individuals and cannot be generalized to everyone with WED/RLS. It is important to talk to your healthcare provider and investigate concerns such as safety, efficacy and cost before making any changes to your treatment regimen. Stories may be altered for length or clarity.

I am a fit, healthy 65 year old woman and I’ve had restless legs for over 20 years, severe for about 10 years. My father and half of my siblings and some cousins also suffer from it to various degrees.

I’ll start with some history. I don’t know exactly when my RLS started but in 1983 (age 34) on a trip to Japan I was lucky to be invited to take part in a tea ceremony which required sitting still on the floor on my heels for a long time. My hosts noticed my agony (which I tried to suppress) and allowed me to relax but the tea ceremony, which was an honor that I had looked forward to, was torture for me.

In 1989 I had my tonsils taken out. In the recovery room I remember the nurse berating me because I was trying to move around and not lying still. I don’t know if I knew about RLS at that time but I wasn’t taking any medication then. During the operation something went wrong with the anesthesia and I was left with a huge bruise on my hand, which prompted the anesthesiologist to pay me a visit afterwards to explain that he had to do something unplanned in a real hurry. I don’t remember what he told me but in retrospect it might have been a reaction to the anesthetics due to my RLS.

Some time in the 1990s I became aware of Restless Legs Foundation, partly through rls.org. For a few years my symptoms were sporadic and stretching my Achilles tendons against the wall for a few minutes was usually enough. I thought my poor sleep was due to caffeine so I tried to eliminate it from my diet.

In 1990, while staying in a hotel with friends, I was prompted to take Tylenol PM to get a good night’s sleep. That was a big mistake but because it didn’t work, several hours later I took some more. There wasn’t any sleep that night. About that time I also developed intolerance to any nighttime cold medicine. It affected me in what I imagine being on speed would be like. I found out about the cold medicine the hard way too. Now I just use a nasal spray when I have a cold.

After going through menopause around 1997 I became very sensitive to temperature changes and still overheat easily. That usually wakes me up and triggers my RLS symptoms.

I had my thyroid removed due to goiter in 2004 and was careful to tell the anesthesiologist that I was extremely sensitive to some anesthetics. I couldn’t be specific because I didn’t understand why or the relationship to RLS at the time but he took me seriously and there was no problem. Previously my father and a sister had had severe reactions to anesthetics during surgery.

Gradually my RLS became worse until it was virtually every night, then several times each night. In 2006 my GP prescribed Sinemet, which quickly caused augmentation and diarrhea so I discontinued it on a regular basis. Because it worked fast, I would take a half a tablet if my legs started aching in a movie or concert or during a long car ride. Used this way, a bottle of 30 tablets lasted eight years.

During those years I just resigned myself to getting up at night every two hours or more often, stretching and doing yoga, listening to the radio and sometimes crying out of frustration. I was very sleep deprived and had big circles and bags under my eyes for almost the entire time.

In March 2014, I moved to a new city, and my new doctor prescribed Ropinerol which seemed like a miracle for the first few months. I graduated to taking .62mg (two and a half .25mg tablets) a few hours before bed. It didn’t last all night and, wary of augmentation, I went back to two .25mg tablets. I’m pretty sure I’m augmenting and am keeping a diary. There seems to be no rhyme or reason for how bad my symptoms will be.

About the time I started taking Ropinerol, I began to sleep well and realized my insomnia had taken on a life of its own. I was lucky to read a newspaper article about a promising book called The Sleep Book, written by Guy Meadows, a sleep psychologist in the UK. He says in the book if you have a physical problem such as RLS it needs to be sorted out first before trying his techniques. The book helped me get rid of all my disruptive insomnia-coping behaviors. I recommend reading it.

I walk for at least an hour most days, weather permitting. I also go backpacking occasionally. Someone will inevitably say something like “we’ll sleep well tonight!” but I think “probably not”. My worst night was a total of two very broken hours after an 18k easy but uphill hike. The silver lining was that I heard kiwis calling and saw a brilliant array of stars including the Milky Way. I would have preferred to be asleep but most New Zealanders have never heard a kiwi in the wild and I have several times.

I try not to let the RLS kick in before bedtime by not sitting for long periods and keeping busy. I try to focus on what I’m doing instead of on the pain, work on a project or task and keep busy. If I sit in front of my computer too long in the evening it is simply asking for trouble. Even five minutes too long can mean an hour or two of trying to calm my legs down.

I have painful symptoms many evenings before bed and get up at least twice for a half to one hour, and usually have pain upon waking in the night.However, after reading what others go through, I choose “moderate” for my level of WED/RLS discomfort on surveys. Right now I can sleep for three to four hours (when I’m lucky), then I get up and work on a jigsaw puzzle, sudoku, read or do chores for about an hour. I can usually get back to sleep for another two or three hours. I know it is better to get up as soon as I wake up with painful symptoms but even with pain it is sometimes hard to get out of bed—and then it gets worse and takes longer to sort out. If I have to get up a second time due to leg pain, I stretch and do yoga or read until I think it’s safe to get back in bed.

About three months ago my GP prescribed Tramadol to be used in movies or car rides. It didn’t work at all in those situations but I take it in the middle of the night in conjunction with Ropinerol - which I’ve reduced to 1.5 .25mg tablets to avoid augmentation. I’ll have to try to find something else for movies and long car rides. WED/RLS is a moving target so what helps for a day or month won’t necessarily keep working.

I often think of Scarlett O’Hara in Gone With the Wind who said: “After all ... tomorrow is another day!” because no matter how bad my night has been, it is a mini miracle almost every morning when I get up, get moving and face the day with no symptoms (except tiredness). I’m grateful to the WED Foundation and the discussion board moderators. Truly, we are not alone.

- Clare Strange (South Island, New Zealand)

• Recognition of clinics as leaders in the field and as specialty centers for patients who are traveling or in search of knowledgeable healthcare providers
• Availability of clinic staff as information resources for referring primary care providers
• Patient educational offerings, print materials and connections with WED Foundation local support groups

Fidgety Legs
Jumpies
The Gotta Moves
Wiggles
Wheeby Geebees
Tortured Limbs
The Jitters
The Jerks
Night Thrashers
Heebee-Jeebees
Mom’s Leg Thing
The Fidgits
The Creepy Crawlies
Jumpy Legs
Jumpy Knees
Tickle Legs
The Crawlies
Edgy Legs
Bugs in the bones
Having butterflies in my legs
Jimmy Legs
Wiggle worms
The The Gotta Moves
Night Crawls
Day Crawls
Wretched limb syndrome
Anxious legs
Anxious feet
The twitches
The screechies
Eeky
Tingle legs
The Screechies
The Crinkles
Stretchy legs
Dead legs
Worm legs
Magic legs
Thing
That Icky twitchy leg
Jumpy life
Dancing legs
Crazy legs
Weak-knee-it is
Lead legs
The Scritchies
The leggy thing
Legs want to break dance
Twidgets
Racing legs
The kicks
Crazy Leg Thing
The Crawls
The jiggies
Atchie legs
The Shpilkes
The Stomps
The night time jitterbug
Happy Feet
Symphony feet
Ant legs
Jellow legs
The creepers
Legitis
The Willywumples
My hands and feet are nervous
Hot legs
Bugs crawling in my legs at night
Trains running up and down my legs
Tortured limbs

1. Become a WED Foundation member (https://www.willis-ekbom.org/join-the-wed-foundation). 
2. Get a friend to like us on Facebook (https://www.facebook.com/pages/Willis-Ekbom-Disease-Foundation). 
3. Visit the blog (wedinfo@blogspot.com) and comment on a guest blogger post. 
4. Write a blog post on WED/RLS on your own personal blog page. 
5. Sign up for our monthly Efriends (https://www.willis-ekbom.org/member-login). 
6. Take the new diagnostic tool survey on our website (http://www.willis-ekbom.org/wed-rls-diagnostic-tool). 
7. Make a gift in honor or memory of someone special to the WED Foundation (https://www.willis-ekbom.org/donate-today). 
8. Purchase a WED/RLS awareness pin (https://www.willis-ekbom.org/about-the-foundation/store). 
9. Purchase a WED/RLS Wordle canvas print to display in your home or work place. 
10. Contact your local newspaper’s health editor, and ask him/her to write a piece about Willis-Ekbom diease/restless legs syndrome (WED/RLS). 
11. Share your WED/RLS story with your Facebook friends. 
12. Change your Facebook Timeline Cover Photo to reflect WED/RLS. See Foundation’s Facebook page for a cover photo. 
13. Write a letter to the editor to your local newspaper or TV station. 
14. Tweet about the WED Foundation during Awareness Month (September). 
15. Text your friends the WED Foundation’s website (www.willis-ekbom.org). 
16. Join the discussion board (http://bb.rls.org/). 
17. Send WED/RLS information, including old editions of NightWalkers, to your doctor’s office so other patients may benefit. 
18. Be a guest blogger at www.wedinfo@blogspot.com by writing a personal story or creating an art image to share with the WED/RLS community. Submit your story to info@willis-ekbom.org and title the email Guest Blogger Request. 
19. Request a free WED/RLS awareness bracelet and wear it the month of September. Email us at info@willis-ekbom.org and title the email Awareness Bracelet Request. 
20. Offer old issues of your Nightwalkers to your local library for their magazine rack. 
21. Create your own WED/RLS fundraiser on https://givemn.org/. 
22. 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 info@willis-ekbom.org and title the email Trial Membership Requests. 
23. Purchase and wear an apparel item from the WED Foundation to the local mall, park, hospital or community event. 
24. Have your city put WED/RLS Awareness Day on the community calendar. 
25. Design and create your own WED/RLS awareness t-shirt or tote bag to wear or carry around the month of September. 
26. Ask your neighbors to leave their porch lights on overnight on September 23 to support the nightwalkers in your community. 
27. 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. 
28. 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. 
29. Hold a small fundraising event in your community to spread awareness of WED/RLS and raise money to support the Foundation’s mission. 
30. Download, print and post WED/RLS posters in your community (schools, church, grocery stores, library, community centers and other billboard areas). 
31. Call a friend or family member with WED/RLS to find out how they are doing. 
32. Make and submit a WED/RLS awareness video. 
33. Give the gift of WED Foundation Membership to family and friends. 
34. Join in a free WED Foundation webinar. 
35. Ask a friend or family member to join in on a foundation webinar. 
36. Write a post on your Facebook account using the words WED/RLS Awareness day in your post on September 23rd. 
37. Become a Support Group Leader or Contact. 
38. Recommend to your WED/RLS healthcare provider that they become a member of our HCP Online Directory. 
39. Host a, “Stomp out WED/RLS” jump rope party for school aged children to bring awareness of the disease in children and adolescents. 
40. Ask local or national sports teams to announce or list on the jumbotron that today is WED/RLS Awareness Day 

Three years ago my WED/RLS that had been an occasional annoyance suddenly made my life very difficult. Plane rides were torture. I was only sleeping a couple of hours a night. Sitting on a couch to read or watch a movie at night became a distant memory.

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.