There are some medical conditions that are surprisingly common but quite mysterious. You have probably heard of chronic fatigue syndrome (CFS). Doctors now call it myalgic encephalomyelitis (ME). The Institute of Medicine reported that as many as 2.5 million Americans suffer from ME/CFS (CDC, July 3, 2017). The cause remains a mystery. Here’s another mystery ailment. We’ll bet you’ve never heard of Willis-Ekbom disease (WED). You may be more familiar with its common name: restless legs syndrome (RLS).
What Is Restless Legs Syndrome?
Neurologists renamed RLS to honor Dr. Karl-Axel Ekbom, a Swedish neurologist who devoted his career in the mid-twentieth century to studying restless legs syndrome. He wasn’t the first to describe the problem of an uncomfortable sensation in the legs that is relieved only by moving them. That honor goes to Thomas Willis, who wrote about it in the seventeenth century.
Over six million people suffer from RLS. They describe the sensations that make them move their legs as “creepy crawly” or “herky-jerky.” Some people complain that RLS feels as if worms are crawling inside their legs. Others experience throbbing, achiness, itching or pain. Many describe this condition as unbearable. There is almost always an overwhelming urge to move the legs.
Usually these perceptions are stronger when sufferers are sitting or lying quietly, especially at night when they may be watching television or trying to sleep. Long trips in a car or airplane are agonizing. RLS disrupts the sleep of two people: the primary patient and that person’s bed partner.
The Impact of RLS on Quality of Life:
If you have never experienced this condition it may be hard to empathize. The name makes it seem almost trivial. But believe us when we say RLS ruins lives.
People who suffer from restless legs syndrome are living with a disability. Working is much harder for these folks. Anxiety and depression often accompany the other symptoms. As mentioned, sleep is often a serious problem.
Clara describes it this way:
“Restless Legs Syndrome has made my life miserable. It started about 22 years ago and seems to be getting worse with age. I go without sleep night after night. Insomnia can cause so many other health problems.”
What Causes Restless Legs Syndrome?
The cause of restless legs has been mysterious for decades. The experts at the National Institute of Neurological Disorders and Stroke are surprisingly candid (Restless Legs Syndrome Fact Sheet):
“In most cases, the cause of RLS is unknown (called primary RLS).”
Some scientists blame it on an imbalance of the brain chemical dopamine. Others suggest that low iron levels may contribute to RLS. New research from Johns Hopkins indicates that people with RLS have increased excitability in the part of the brain that controls leg movements (Sleep Medicine, online, May 31, 2018).
The authors of the study offer the following observations:
Richard Allen, PhD, is professor of neurology at Johns Hopkins University School of Medicine:
“Essentially the brain sends the signal when it’s preparing to move a limb, even when you aren’t planning to move, so your body is ready and amped up. The only way to alleviate the feeling is to move.”
These researchers found that patients with moderate to severe RLS lacked normal neuronal inhibition. Think of this as faulty brakes in the brain.
In an interview from Johns Hopkins Medicine in Newswise (August 29, 2018), the authors offer insights into their research:
Rachel Salas, MD, is associate professor of neurology at Johns Hopkins. She notes that:
“This basically means that inhibition is reduced or weakened in people with restless legs syndrome compared to people without the condition. The reduced response means that the region of the brain controlling the legs shows increased cortical excitability in the motor cortex.”
Dr. Salas points out that commonly prescribed drugs such as ropinirole (Requip) or pramipexole (Mirapex) can ease symptoms initially but may make the condition worse in the long run. To learn more about some of the bizarre and troubling side effects of such medicines, check out this link.
A number of medical conditions can increase the likelihood of developing restless legs syndrome. They include Parkinson’s disease, Kidney disease and nerve damage.
Drugs That Trigger RLS:
It comes as a surprise to many people to learn that the medicines they may be taking could aggravate the creepy-crawly sensations of RLS (Annals of Pharmacotherapy, July, 2018). We doubt that many health professionals realize that a drug they are prescribing or dispensing might cause or intensify symptoms of RLS. We also doubt that many patients are warned about this potential side effect.
Drugs used to treat mental illness (schizophrenia or depression) can do it. They include antipsychotic medications such as aripiprazole (Abilify), haloperidol (Haldol), olanzapine (Zyprexa), quetiapine (Seroquel) and phenothiazine derivatives. Antidepressants have also been implicated. Some that have been discussed include citalopram (Celexa,) duloxetine (Cymbalta), escitalopram (Lexapro), fluoxetine (Prozac), paroxetine (Paxil) or sertraline (Zoloft).
PM Sleeping Pills/Pain Relievers and RLS:
The Restless Leg Fact Sheet from the NIH also mentions the antihistamine diphenhydramine (DPH) as a contributor. We find that especially paradoxical, since virtually all of the night time (“PM”) pain relievers rely on DPH as a key ingredient. Check out the ingredients in Advil PM, Aleve PM, Bayer PM, Excedrin PM and Tylenol PM. They all share diphenhydramine in common.
DPH is a very sedating antihistamine. It is found in the allergy medicine Benadryl. DPH is taken by millions of people every night to get to sleep. Remember, people with RLS often suffer from sleep deprivation. Now they are taking a drug that could make their situation worse. Look on the label to see if there is a warning about RLS. (We didn’t see one.)
Soap-Soap-Soap to Relieve Restless Legs Syndrome!
There is a reason why we love it when home remedies work for hard-to-treat conditions like RLS. We have heard from many people that putting a bar of soap under the bottom sheet near where the legs will rest eases the discomfort. Others report that putting soap chips in their socks can make trans-Atlantic flights bearable.
Here are a few of their experiences:
“My husband has leg cramps at night that wake him up. He eats a pickle and is able to go back to sleep without cramps.
“After I read about soap under the bed sheet, I mentioned it to him, and he was too skeptical to try it. Unbeknownst to him, I slipped a bar of soap under the sheet on MY side of the bed where he wouldn’t feel it with his toes. After three weeks of no cramps, I asked him if they were still bothering him–and he said no! I confessed what I’d done, and he was amazed that it had really worked. It wasn’t psychosomatic because he didn’t even know the soap was there.
“Here’s a plus: I have suffered from restless legs for decades, and sometimes they keep me awake. I wasn’t bothered with them the entire three weeks. You can bet I’ll keep a bar of soap on hand from now on!”
Another reader wrote:
“I thought soap was a crazy idea, but I got desperate enough to try it. Both Ivory and Dove helped, but only a bit. Then I read online that Marseille soap has been used for restless legs for centuries. I have a stash of little soaps that people have given me and found a bar of Marseille soap. I unwrapped it, stuck it under the sheet next to the Ivory, and was able to sleep all night.”
Ken R. In Jacksonville, FL loves soap for RLS and lots more:
“Try this: a bar of soap under your sheet at the foot of the bed and one at your hips. I have eliminated (90%) of restless legs syndrome, (99%) of sciatic nerve pain, from the lower back to my left hip. It works for arthritis in my toes and has eliminated most of the inflammation and pain in two of my fingers of my left hand. I have rheumatoid arthritis and if I hold a bar of soap in my hand while I sleep it takes away the pain.
“I got this from The People’s Pharmacy!
During the day I’ll put a bar of soap in my left pant pocket because of pain in my hip. I have been advised by my doctors to have hip surgery three years ago. (I have delayed it). When I have the bar of soap most of the pain disappears, and eliminates most of my limp!
“I have been using the bars of soap for two months now. I actually use four bars in the bed. I have been using Zest and Irish Spring. From what I read, it has something to do with the fragrance chemicals in the soap. Just search “restless legs” in The People’s Pharmacy to read more.”
The People’s Pharmacy Perspective:
Soap under the bottom sheet is a very low-tech and inexpensive approach to this troublesome syndrome. It might help and, unlike the drugs prescribed for WED, has few if any side effects. You can learn more about the underlying mechanism behind soap for leg cramps and RLS at this link.
We developed Bed Soap with extra limonene (the fragrance that we think is especially helpful against leg cramps and RLS). It is flat so it doesn’t feel uncomfortable under your legs. We also developed Leg Soap, small soap chips that can be put in socks. This convenient strategy makes it easier to travel in a car or on an airplane.
Share your own soap story in the comment section below. We know that soap won’t work for everyone, but compared to the drugs that are pricey and might make this condition worse, we think soap is worth a try.