Why Is Restless Legs Syndrome So Hard to Treat? 2nd Sleep Disorders In America Survey Results

3 min read

If you are living with restless legs syndrome (RLS) and feel frustrated by the list of treatments that have not helped your restless legs, you are not alone. RLS is a neurological disorder that is hard to describe, hard to diagnose, and hard to effectively treat.

Many people who live with RLS spend years trying to find something – anything – to ease the unpleasant sensations that make relaxation and sleep nearly impossible.

If this sounds familiar, what options do you have? What are some things to consider as you continue the quest for a good night’s sleep?

The impact of other health conditions

Most people who have RLS also live with other health conditions. In our 2nd Sleep Disorders In America Survey, 97 percent of people surveyed were diagnosed with another health condition besides RLS. These include hypertension, arthritis, neuropathy, and fibromyalgia.

Managing other health conditions can make it harder to treat RLS. The drugs that people take to help 1 health problem can have a negative effect on another health problem. This can mean people are forced to choose which condition they want to improve. In our survey, 35 percent* of respondents tend to prioritize treating other health conditions over their RLS.

A world full of triggers

One of the hardest things about living with RLS is figuring out how to prevent symptoms or reduce their severity before they even start. Some people say it is like trying to break a code that your own body has created.

Common triggers include heat, stress, lack of exercise, and certain foods. Caffeine often makes it onto the list of things people avoid. Of the 62 percent of people surveyed who avoid caffeine, 38 percent cite that it has made a difference in improving their sleep quality.

Factors that impact RLS include stress, anxiety, chronic pain, and poor sleeping habits.

Weighing treatment options

There are many factors that people consider when making treatment decisions, including cost, side effects, and how effective it is.

Even though the U.S. Food and Drug Administration (FDA) has approved 4 drugs to treat RLS, 82 percent of people surveyed currently use over-the-counter or alternative therapies. Plus, 41 percent* would rather make lifestyle changes than take prescription drugs.

Some alternative therapies that people use for RLS include vitamin D, magnesium, heat therapy, exercise, and weighted blankets.

How well do treatments work?

Despite the availability of drugs and alternative treatment options, many people with RLS continue to search for a better solution. Of those surveyed, 86 percent regularly see a doctor for their RLS, but only 27 percent are confident they are doing everything necessary to manage their RLS.

One concern that is unique to people with RLS is the fear of augmentation. Augmentation is the sudden, severe worsening of RLS symptoms while taking a drug that had been working well in the past. This can make it even more difficult for people to feel comfortable starting a drug or changing to a different drug if they have concerns or experience with augmentation.

According to the 2nd Sleep Disorders In America survey, 3 in 10 actively seek out information about the latest RLS treatments and only 19% feel well-controlled on current treatment.

A community that understands

No one has to go through a restless legs syndrome journey alone. Many of our community advocates have shared the ups and downs of their treatment experiences. They write about the challenges of finding a medicine that works and what it feels like when that drug stops working. Many have also shared their experiences with trying different alternative treatments like magnesium, weighted blankets, and acupressure.

Some of their articles include:

Once Upon a Time: The Night I Forgot My Medications
Agony Aunt: Pharmacological Interactions With My Restless Legs Syndrome
When the Meds Don’t Work
RLS Fear: Augmentation
The Most Frustrating Thing About My RLS Is Its Persistence

If you are interested in learning more about experiences with different non-prescription drug options, check out our featured collection of lifestyle changes and alternative treatments.

What have your treatment experiences been like? Tell us your story, check out our forums, or leave a comment below.

The 2nd Sleep Disorders In America Survey was conducted online from May through August 2021. Of the 1,890 people who completed the survey, 317 were restless legs syndrome respondents.
*Top 2 responses on 7-point scale

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CommunityMember42 Member
I've had RLS since 1992, after a hip replacement. It was not often at first, now is chronic. My doctor has placed me on Sinemet ( Carbo/Dopa) plus Requip. I have to take it 3 times within 24 hr period. It is now to the cramping stage. Shirley Wallace 86 yrs old.
1. Ray Li Member
 <inline-mention username="CommunityMember42" user-id="4659409"/> I am sorry to hear that your RLS started after hip replacement surgery and that it is now a chronic problem for you. I hope you are managing ok on the meds that you were prescribed. 🥄🦄 Ray (Team member)
CommunityMember39 Member
I was diagnosed with RLS about 12 years ago, though I now know I had it all my life since about 16. I was put on Mirapex. Slowly, I developed compulsive behaviors. the worst was gambling. I was surrounded by family members with the addiction to gambling, but in 56 years had never even had a temptation. I gambled away my whole paycheck and then went to a payday loan and gambled that away. I stayed out all night and didn't tell my husband. In desperation, I went to the doctor. After checking, she said that it was rare, but it was documented. Within 6 weeks I had completely lost the desire to gamble. Instead, for about 10 years I take one 5 mg of oxycontin each night. I can still have worse flareups sometimes, but hot baths and vacuuming at night have usually put me back to sleep. I will also add that the family members and including my husband still do not believe my story; however, they're the ones who still gamble not me. I went through with drawl all alone, supported only by my doctor.
1. Ray Li Member
 <inline-mention username="CommunityMember39" user-id="4659171"/> First, thank you so much for sharing this with us. I am so sorry about your family not believing you. Have you tried showing them studies that show some of these meds can cause compulsive behaviors? Addiction runs in my family, booze, drugs and gambling. I'm very self aware because of fear that I will be addicted to something. I wasn't aware when Pramipexole started making me want to shop a lot but thankfully read an article on here from someone who also went through that and was able to realize that was happening to me. I now keep an eye on it, especially since recently having to increase the dose. I also made my husband aware so he can help keep an eye on things. I am sorry that you had to go through withdrawal with only the support of your doctor, no one should have to do that alone. Have you tried other RLS meds aside from Mirapex? 🥄🦄 Ray (Team member)