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Patient perspective: Restless legs syndrome first apparent during pregnancy

Patient perspective: Restless legs syndrome first apparent during pregnancy
Literature review current through: Jan 2024.
This topic last updated: Jan 19, 2023.

INTRODUCTION — This topic was written by an individual patient diagnosed with restless legs syndrome (RLS). It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.

For related clinical topics, please see:

(See "Clinical features and diagnosis of restless legs syndrome and periodic limb movement disorder in adults".)

(See "Management of restless legs syndrome and periodic limb movement disorder in adults".)

(See "Restless legs syndrome during pregnancy and lactation".)

UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5th to 6th grade reading level, that answer the main questions a patient is likely to have about their condition. You can share this content directly with your patients:

(See "Patient education: Restless legs syndrome (The Basics)".)

BACKGROUND

Prevalence and awareness — RLS is a neurologic disease that affects approximately 7 to 8 percent of the United States population, according to the RLS Foundation [1]. It is a sad irony that so many have never heard of RLS. It is not a topic that was taught in medical schools in the past.

RLS has now gained creditability within the medical community as sleep deprivation has become recognized as an important issue. People who have RLS do not have the quality of life that most people enjoy because their daily struggle does not allow them to sit quietly at a movie or in an airplane, never mind trying to sleep at night.

Initial signs during pregnancy — My first signs of RLS appeared at age 24, when I was pregnant with my first child. This was not a total surprise to me, as my mother had RLS since I was a teenager. She would cope by walking around at night until she was exhausted, and then she would fall to sleep for only three to four hours. How horrible, I thought, since I needed eight or more hours of sleep growing up. Little did I know that I was in store to suffer the same condition!

Luckily, after the pregnancy, my RLS abated for a number of years. I had two more pregnancies, and the last one, at age 38, brought about some of the same discomfort and sleep deprivation.

Daily symptoms (mid 40s) — It was in my mid-40s that I started having symptoms in my legs on a regular basis. It felt like ants running a race inside my leg. It was always the left leg and nothing was outwardly moving, just inside.

As time went on and the disease progressed, my quality of life deteriorated. Being a wife, a mom, and a teacher with only three hours of sleep each night was horrific. I coped much the same way my mother had, and I would have my husband massage my leg in the evenings to relieve the discomfort.

At my annual doctor visits, I always mentioned this discomfort and the need to move. Unfortunately, there did not seem to be any help for me, as the doctor knew very little about RLS. My RLS always worsened in the summer, and after spending almost the whole month of August sleeping on a bean bag on the living room floor, I announced that I needed help.

Seeking medical care — I knew I needed help, but I didn't know where to go. The doctors I had spoken to didn't know much about RLS.

Eventually, I saw a notice in the local newspaper about an RLS support group meeting. That meeting and subsequent ones changed my life: I learned of a doctor in the area who could help me, and I didn't feel like I was going through this journey alone. The RLS support group leader provided the doctor's contact information, and I proceeded to make the initial phone call.

DIAGNOSIS AND TREATMENT

Yes, I have these symptoms! — RLS is not easy to diagnose, unless you know what questions to ask. There are no clinical tests or visible conditions to observe. The telltale signs are uncomfortable sensations in the legs, usually appearing in the evening, while at rest (table 1). Symptoms can improve with movement. "Yes, I have these symptoms!" I said to this new neurologist as he was taking notes of my general health status.

Early medication trials — I am very fortunate to be healthy except for this annoying disease, which has drastically changed my quality of life. I had always resisted the need for medication, but I was now open to seeing what my options might be.

I started using medications that were available at the time with little success. I then tried the first dopamine agonist, but it did not provide much relief. It was when I began taking pramipexole, a newer dopamine agonist, that my life improved dramatically. The first night provided a good night's sleep in bed, and both my husband and I were thrilled. However, as with all medications, things eventually changed. (See 'Augmentation' below.)

RLS affects everyone differently, so what works for one person does not for another. There are several US Food and Drug Administration (FDA)-approved medications for RLS, and some work better than others. A key role of the RLS specialist is to guide patients through the process of trial and error to find what works for them.

Augmentation — I have been lucky in that pramipexole has worked very well for me for almost 20 years. However, I am now developing augmentation, with discomfort occurring earlier in the day and in both legs (table 2). Augmentation changes a patient's view of what once may have been their miracle drug. Doctors didn't really know about the long-term effects of dopamine agonists when they started using them for RLS, so I wasn't warned about this outcome, and I was grateful to find a medication that was so effective.

Would I have taken pramipexole 20 years ago if I had known augmentation would cause earlier discomfort and symptoms in both legs? Probably – there weren't better options. I needed relief at the time, so I am fortunate that pramipexole worked for as long as it did without side effects and with good results. However, augmentation is now occurring, and along with my physician, I am searching for additional medications to help with this new problem.

Nonpharmacologic techniques — Not everyone wants to use a medication to treat RLS, and there are some techniques to help cope with the restlessness. Depending on the severity of a person's symptoms, they can try walking, stretching, massage, acupuncture, distractions (such as eating one piece of popcorn at a time during a movie), music, and mindfulness. Some draw and paint while others work on puzzles to keep their minds engaged until symptoms are relieved.

In her book, Restless Legs Syndrome: The RLS Rebel's Survival Guide, Jill Gunzel provides a "bag of tricks" approach to attack RLS. She mentions certain triggers and points out that they should be avoided if possible. Antihistamines such as diphenhydramine, caffeine, alcohol including red wine, chocolate, ice cream, and rich foods can all aggravate RLS. She believes in other tricks as well, which might include supplements, herbal teas, hot showers, warm microwave packs, and vibrators or massagers. Some of these items only work well for a while, but at least they bring temporary relief when needed.

IMPACT

Lifestyle problems — RLS robs you of a normal life. When you spend your night walking aimlessly from one room to another until you are ready to drop from exhaustion, it's difficult to explain to other people. That is a problem with RLS, as many people do not understand the disease. Once you describe the symptoms, however, the disease becomes something that a mother, an uncle, a neighbor, or even that person recognizes as familiar. Many people endure RLS, even if it happens occasionally.

The lack of sleep caused by RLS is difficult day after day. As a substitute teacher, I was frequently unable to accept work assignments after only getting two to three hours of sleep.

Socialization — RLS affects socialization. It is so difficult to enjoy a performance in a theatre or a concert when you must stay seated and your legs are going crazy! It's all you can focus on. It's important for older adults to keep up an active social life, but I think twice, given the discomfort of these situations.

In a movie theatre, I can sit for a few minutes, but then I stand in the entrance area doing stretch exercises for most of the movie. I have a season's pass to the summer theatre, which starts at 2:00 PM. By 2:30, my legs are moving, and I'm uncomfortable for the rest of the performance. I play cards with friends, and they know of my condition, but it is still embarrassing to stand or move about while everyone else is seated.

Travel is difficult. Flying can be a real challenge, so I opt to fly in the morning and always ask for an aisle seat so that I can stretch.

Effects on relationships — People with RLS do not go through this journey alone. My husband of 55 years knew that my mother had RLS, but we did not know that I would follow in her path.

My RLS started in my 20s but subsided until my mid-40s. It slowly got worse until my 50s, when my life was in turmoil. We were making a household move to another town, leaving family behind, and my RLS was out of control. I would go to bed with my spouse, but 10 minutes later, I was trying to calm my legs by walking. I would seek comfort with a hot pack, watch mindless television, and finally fall asleep on a bean bag or a couch. My husband missed our closeness as I did, but I could not stay in bed. This continued for many years, and that's why it's so important for spouses and partners to be educated about this disease.

Without a supportive spouse, a relationship could easily fall apart. It's important for all family members to understand what RLS does to a family routine. When a parent is suffering with out-of-control movements or lack of adequate sleep, or a child is so restless in class that they can't sit still, the entire family needs to work together to support them.

WHERE TO FIND HELP

Help is on the way — The right doctor is the key to the treatment of RLS. Patients should look for an experienced neurologist or sleep specialist who understands and treats patients with RLS.

Finding the right doctor is not always easy. The RLS Foundation is an excellent source for referrals. In addition, they have established a nationwide network of Quality Care Centers as regional resources for both physicians and patients.

The RLS Foundation (www.rls.org) is always available for help or assistance. Their quarterly newsletter, The Nightwalkers, is a wonderful source of information from doctors as well as from members. The Foundation has been working tirelessly for 30 years to inform and educate the public about RLS. They are instrumental in funding research to help doctors learn more about RLS and find a cure.

I have spent six years on the Board of Directors at the RLS Foundation and worked on the national level to spread the word about RLS. My hope is that one day there will be a cure for this debilitating disease. I have devoted my energies to educating and helping others, so in return my children and grandchildren will not share in this RLS nightmare.

Support groups — The help that I received from my first support group meeting encouraged me to start my own group. Since my mother never had anyone to help her in her struggles with RLS, I wanted to give back to the community in any way I could, to help lessen others' struggle with this disease.

It has been very rewarding to guide support group members to the right doctor, to listen to their stories of sleepless nights and horrible restlessness, to share good results from doctor visits, and to just let people know that they are not alone. This is a small group, so we have a chance to speak and share as much as needed. Our group is especially grateful to our physician advisor who regularly comes to meetings to answer questions from the group. I have learned so much from these new friends, and they, in return, are incredibly thankful to me for conducting the group.

  1. Restless Legs Syndrome Foundation: Symptoms & Diagnosis. https://www.rls.org/understanding-rls/symptoms-diagnosis (Accessed on October 31, 2022).
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