restless legs syndrome

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.

Can A Drug for Restless Legs Turn You Into a Gambling Addict?

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.

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  1. Evelyn L
    Indiana
    Reply

    When I suffered from fibromyalgia many years ago I also had RLS, sometimes so severe I felt it in my arms as well. My doctor advised taking vitamin E at bedtime, and it worked beautifully. Through some diet changes my conditions are all in remission, but I keep vitamin E on hand for the rare occasions when I need it.

  2. Cecilia
    NC
    Reply

    I have observed that having had too much exercise or too little causes me to have RLS syndrome. I don’t take anything in the way of drugs or pain killers but natural supplements, do have soap in the bed, do take pickle juice when I get cramps–which happens when I have worked hard in the yard and garden. The two don’t necessarily go together, but I have both and am aware of PP natural remedies—THANK YOU for them!

  3. Jim Patterson
    North Carolina
    Reply

    I take an Apple Cider Vinegar pill for RLS. Works for me. A Friend chokes down two tablespoons of yellow mustard or dill pickle juice for his RLS pain.

  4. Judi L
    Oregon
    Reply

    I have found that compression socks worn at bed time really help me with restless legs or I put them on in the middle of the night on whichever leg is bothering me. Also getting up and taking a very hot shower in the near-dark raises my body temperature, and I am able to get to sleep within a few minutes after being bothered by restless legs.

  5. Karen
    Lockport, NY
    Reply

    My RLS starts to bother me before I go to bed. By 7 pm, I have the urge to move, almost constantly. Sometimes, it starts to bug me, as soon as noon. I have no choice. I have to take a Mirapex. My doctor and my gynocologist didn’t want to prescribe this. I think my GP didn’t really believe me, til I told her, four times, the RLS was driving me up the wall. My gynocologist said that all the available meds had too many side effects and flat out refused to prescribe anything. I read up on the side effects, and I have not had any of them. But, they can always start. I am going to try the soap chips in my socks. The only thing is, this will not be possible in the summer, when I’m in flip flops all summer long.

  6. Barbie
    Roswell, ga 30076
    Reply

    Where do you buy the soap ? I have been taking tramadol for pain

  7. Carey G
    Or
    Reply

    I’ve had RLS my whole life, and it has gotten worse as I aged until I tried something that made a world of difference (more on that). I tried the soap trick, and it worked for a few days before the placebo effect wore off. Exercising the leg that is acting up (deep knee bends) usually helps, but some nights, the RLS switches back and forth between legs. What I finally found that helps is a puff or two of marijuana before I go to bed at night (I live in Oregon where it is legal). The first time I started this regimen, two full months passed before I had my first episode and when I did it was so mild and I fell right back to sleep. When we went on an overseas trip and I couldn’t take my ‘medicine,’ my wife noticed a difference right away. It may not work for you, but it sure has helped me.

  8. Mark
    USA
    Reply

    Sometimes, magnesium supplements take care of my RLS. But, if I’m not eating clean food (lots of veggies, greens, fruits, grass-fed meats, etc) my RLS kicks in. It’s especially bad if I eat much sugar or processed foods. As soon as I begin eating good food it will disappear within a couple of days. Read food labels, and don’t eat any ingredient that doesn’t sound like a basic food item.

    • Margaret
      Chicago
      Reply

      Tramadol is the best. Been taking it at night for about two years now and it’s still working. I tried just about everything else.

  9. Mary
    Georgetown
    Reply

    While talking with an aqaintance several years ago -we both discovered our RLS disappeared while on low dose synthryoid-75 mcg daily. To test it I stopped taking it. By the 2-3 day the RLs was back. This goes back to childhood for me. Needless to say I will not go off again!

  10. Susan
    Reply

    Additional Restless Legs Syndrome (RLS) triggers: Antihistamines, including diphenhydramine (Benadryl) for treating allergies and in the OTC ‘PM’ medications used to treat insomnia. Sudafed does not trigger RLS symptoms for me.

    More RLS triggers: Promethazine (Phenergan), used to treat allergies, nausea, motion sickness, and other anti-nausea medicatons in the same drug class. Zofran is an alternative drug I can take for nausea.

    I avoid drinking Whie Zinfandel, which aggravates my RLS,, but I don’t have the same reaction to red or white wines.

    I’ll try the soap.

  11. Ted
    So Cal
    Reply

    Ok , don’t understand how it could
    possibly work. Do understand how other drugs could cause the problems.

  12. Rita Kinder
    Indiana
    Reply

    I have been taking Tramadol for arthritis pain for several years. When I have forgotten a dose, I will start to have
    RLS. One time I skipped two doses while traveling and it
    was unbearable. Tramadol does not stop RLS, instead it
    is a withdrawal symptom.

  13. Avery
    Maryland
    Reply

    About the Benadryl. I’ve never suffered from RLS (although my daughter has it and I know how miserable it makes her), but last year I had two attacks about a month apart, and not only did I have restless legs, but also terrible itching in my face and arms. It took me a while to connect the dots, but eventually I recalled I had taken Benadryl both times right before bed to relieve hay fever symptoms. I haven’t touched the stuff since.

  14. WILLIAM F. W.
    MS
    Reply

    I have been taking tramadol for many years for back pain. When my physical therapist got it much better, I halved my dosage. Result – restless legs.
    A few years ago I had some kind of crud and restless legs with it. But it turned out that I was taking Sudafed twice a day instead of one. Stop Sudafed, stop restless legs.

    My latest episode caused by halving tramadol proved to me that tramadol has been holding the restless legs down. Cut tramadol – get RLS. Got back to a normal dose – stop RLS.

  15. John
    Ohio
    Reply

    Wife use to wake up every a.m. with neck pain from auto accident 25 years ago. She started putting lavender oil on cloth and put if under her pillow. No longer wakes up in pain.

  16. Candise Rubenstein
    Florida
    Reply

    It works…….Up all night with leg cramps, have been using soap under my sheets for a few months. Thank you

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