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.
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Symptoms and missed opportunities — My earliest memories of problems that I now know were due to RLS occurred about 50 years ago, when I was around 20. Any time an airplane's Fasten Seatbelt sign came on, my legs would immediately become so restless that I felt that I needed to get up and walk around. I did not seek medical help because I thought that everyone experienced this restlessness when confined to an airplane seat.
Over the years, the severity of the restlessness and the associated urge to move slowly increased, and I started to have symptoms anytime I was the passenger in a car. It also became almost impossible to sleep on an airplane, even on very long overnight flights.
I finally approached my general practitioner about this problem when I was 47. He suggested oral iron supplements but did not perform any blood tests. He didn't tell me that it would take weeks to see any effects, so I gave up when I saw no improvement after about a week.
A decade later, the symptoms spread from my legs to my abdomen and arms, and I was experiencing severe insomnia each night. This time, I asked the neurologist who was treating my migraines for help. She ran an electroencephalogram (EEG; results were normal) and prescribed trazodone for the sleep deprivation. Trazodone did not help my RLS or the associated insomnia, and I experienced worsened coordination and falls. She switched me to zolpidem for a short time and then to eszopiclone. Eszopiclone helped the insomnia for about a year, but the benefit slowly declined to the point of becoming ineffective.
During this time, none of the prescribed medications did anything to help with my movement issues beyond allowing me to fall asleep more easily. The neurologist finally threw up her hands and said she was out of ideas other than to offer referral to a psychiatrist. I was certain this wasn't an imaginary issue, so I did a bit of research and sent myself to a sleep clinic.
Diagnosis and early treatment trials — The physician associate (PA) at the sleep clinic immediately recognized my RLS, even before she scored my answers to the diagnostic questionnaire (table 1). The scoring of the questions indicated that I was at the high end of severe RLS.
I was prescribed 0.25 mg pramipexole. I was not given any warnings about probability of augmentation or impulse control disorders that pramipexole can cause. The PA did not order any blood tests for iron levels. Six months later, my dose had to be increased to 0.5 mg when it was losing effectiveness. Her explanation was that I was developing tolerance; I later understood that this was a sign of augmentation (table 2). One year later, I was switched to the rotigotine patch rather than further increasing the pramipexole.
Finding an RLS specialist — I eventually contacted the RLS Foundation to find the name of the best RLS doctor in my area. I was fortunate to get an appointment just three months later. I was left on the rotigotine patch for about a year but again developed augmentation and was switched back to pramipexole. My doctor might have prescribed an opioid but held off because I was in the process of moving out of state.
It took four months to get an appointment with an RLS doctor in my new state. I was told that she was the only neurologist in the state who was familiar with treating RLS complicated by augmentation. Unfortunately, she was also located 100 miles away, but I made the effort to reach her.
An effective therapy, but side effects — The new neurologist immediately put me on 5 mg methadone with instructions to titrate up to 10 mg, but I found that 10 mg left me groggy and mentally hazy. She also instructed me to take the methadone at bedtime, but it caused me to be wide awake and fully alert for many hours.
I found out through the RLS Foundation patient support group that others had also experienced this alerting effect with methadone and decided to take it at lunch, which helped. But I still needed help to stay asleep each night. I started using a tetrahydrocannabinol (THC) edible at bedtime.
My doctor did not discuss any of the potential side effects of methadone (eg, depression, suicidal ideation, and low testosterone), just the complexity of getting monthly prescription refills when monthly trips to the office were impractical. (See 'Disclosing risk to patients' below.)
More complications — Six months later, I started to develop severe depression with suicidal ideation. My neurologist suspected that it was an interaction between the methadone and the THC edible. The depression became less severe when I stopped the THC, but the insomnia returned, so I started alternating one week on, one week off the THC, which seemed to help.
When the suicidal ideation returned while I was off of THC, I was told to find a psychiatrist. My psychiatrist was very familiar with RLS and prescribed bupropion, an antidepressant that is reported to be compatible with RLS. Unfortunately, I had the opposite experience, and for the next week, I could not sit for 30 seconds, much less sleep. When I finally was able to contact my neurologist, she doubled the dose of all of my RLS medications to regain control.
A few weeks later, the insomnia component of RLS was so bad that I was not able to sleep for three days. Ultimately, I was admitted to a behavioral health hospital and continued to suffer from miscommunications and medication withdrawal, from which I did not fully recover for another 18 months.
Unrecognized low testosterone — I had long suspected that there was something else causing my occasional bouts with depression. Through my own research, I found that extended use of methadone can cause depressed testosterone levels in men. I also found that I had a number of other symptoms of low testosterone (eg, low libido, low energy).
I referred myself to a specialty clinic where they conducted blood tests and found that my free testosterone was about half of the low end of normal. One injection was sufficient to clear the depression that I had been experiencing for years. Despite my complaining about depression to all of my doctors, no one had ever thought of low testosterone from methadone. (See 'Disclosing risk to patients' below.)
Stigma and barriers — Recently, my primary care physician (PCP) announced her retirement. I was given a list of family practice clinics in the same organization that were currently accepting new patients. All of the providers at all five clinics refused to accept me as a patient given the need to write monthly prescriptions for methadone. I was also refused by four other clinics and a pain management specialist, who said he doesn't treat RLS. I was beginning to lose hope of ever finding someone who would provide the care that I need without cherry picking which conditions they would and would not treat.
Ultimately, it took me three weeks of almost constant searching to find a provider who would accept me. At 70 years of age, I was beginning to fear that I would spend the rest of my retirement suffering through various untreated health conditions simply because all of the local providers were too scared to accept a patient whose health is dependent upon a low-dose opioid.
Disclosing risk to patients — I have developed many side effects of medications for RLS, and I have never felt prepared or adequately educated ahead of time. My RLS providers have never provided enough information about possible complications, and I have been on my own to suggest the appropriate follow-up testing.
●Dopamine agonists – By the time a provider first talked to me about augmentation due to dopamine agonists, I had already developed the problem twice. Many providers have not been well versed on how to diagnose or manage augmentation, and I have suffered unnecessarily because of it (table 2). I feel very fortunate to have been offered a transition directly to a low-dose opioid, rather than being told to withdraw from dopamine agonists "cold turkey" before starting an alternative medication. This saved me a week of no sleep and elevated urge-to-move symptoms.
I also was not educated about impulse control disorder. I only realized that I was experiencing it when I was taken off dopamine agonists.
●Methadone – When I was started on methadone, I was given a brief warning about constipation, and I was warned of the risk of opioid use disorder. My provider felt that the risk was minor since I do not have a family history of addiction and also because the dose was so low. Unfortunately, my provider did not discuss the risks of depression, suicidal ideation, or low testosterone. I suspect she assumed that my primary care physician (PCP) would monitor me for these complications, which did not happen.
When I was diagnosed and treated for low testosterone by a specialist, I realized how much my neurologists had not been telling me about the potential risks of RLS treatments. I was briefed about the short- and long-term side effects of testosterone supplementation in a much more comprehensive way than when I had started any RLS medication.
Reaching my provider — Communication with my RLS providers has been an ongoing issue. My neurologist only treats patients for a half day each week and doesn't have a dedicated staff to screen emails or process prescription refill requests. On several occasions, I could not get through when I needed immediate assistance, and staff didn't understand the urgency of my situation. At other times, it has taken three weeks to get a response to a simple question.
I have been very fortunate that all of my providers have been receptive to scientific publications that I have shared with them. Not all clinicians take the time to do this for their patients.
Patient-centered care — I rarely receive enough information from providers about my treatment plan. I find that I am often educating my provider rather than receiving any guidance. I often have to research my own symptoms, identify a probable diagnosis, and then request the appropriate test or treatment. When I don't do this, I am usually met with blank stares, told that my symptoms don't make sense, or given the suggestion that my only option is a visit to the emergency department.
I feel that I have almost always been treated with respect. The one exception is when I have tried to discuss the use of opioids to treat RLS. I have encountered strange faces and snide comments. Numerous providers have flatly refused to talk to me once they learn that my condition requires daily use of an opioid. (See 'Stigma and barriers' above.)
I have also been bothered by how some providers have refused to engage my wife in the discussion beyond an initial greeting. This caused a major problem when a provider refused to acknowledge her presence while trying to evaluate the severity of my depression.
I regularly ask about RLS research projects that I could participate in. Unfortunately, almost all RLS clinical trials refuse to accept me because my RLS is too severe.
There are not nearly enough doctors available who are well trained in the diagnosis and treatment of RLS. Three to six months is a fairly typical time period for patients to wait between appointments, even for those in need of immediate help. New patient appointments can require a year for doctors with established reputations for treating RLS. The problem is even worse for people who live in rural areas.
Quality of life — RLS has essentially destroyed my life. I worked hard through my career to provide for a retirement where we dreamed of traveling around the world scuba diving off remote tropical islands and spending weeks relaxing on cruise ships. RLS has taken all of that away from me.
My good days are filled with mild depression and my bad days often leave me wondering why I continue to struggle. The sleep deprivation caused by RLS leaves me fatigued and trying to catch up on sleep most days. That leaves little time for things that I used to love to do, such as run and work on my classic car.
Relationships — RLS has added to stress in my 50-year marriage, yet my marriage is probably the one thing that has kept me alive. My wife also has a chronic neurologic disease that requires me to serve as her caregiver, and this keeps me going.
Because of my unusual sleep pattern and potentially dangerous movements at night, we have to sleep in different beds. A recent survey by the RLS Foundation found that 5 percent of spouses of RLS patients were considering ending their relationship due to their partner's RLS.
RLS has also destroyed my social life. Dinner out with friends, going to a movie, and attending a concert or a play are unthinkable because I would have to get up to walk around as soon as I am seated. I used to love to watch sports but have lost that interest because I cannot sit through a game. I have also lost most of my friends because of the difficulty of maintaining a social life. Even simple pleasures like going out for a beer with my former coworkers or friends is no longer an option because of my medications and my depression.
Travel — My wife and I always loved to travel. Before my RLS became severe, we would fly to tropical destinations to scuba dive or would take extended cruise vacations to visit places on our "bucket list." That is no longer possible. I cannot tolerate extended airline flights or cruises.
My wife has suggested travel by car, but that is not an option either because sitting as a passenger aggravates my RLS, and driving is risky due to continual sleep deprivation. As a result, I often start to feel that my RLS is holding me prisoner in my own home.
How I cope — I try to spend my days constructively by doing patient support work with other RLS patients, reading the latest RLS-related research publications, and searching for any type of clinical trial that might accept a patient with very severe RLS. This has taught me about the level of misinformation both on the internet and in published medical literature. It has also introduced me to the vast number of others who are in positions very similar to mine.
ADVICE AND RESOURCES
I would offer physicians the following advice on RLS:
●Remember that the first symptom that brings many patients to a provider's office is not the urge to move, it is insomnia. Insomnia is a component of RLS and not necessarily a comorbid condition.
●The urge to move is not limited to the legs. It can occur in the arms, hands, neck, abdominals, or any other voluntary muscle group. There are even publications about restless genital syndrome.
●Remember that dopamine agonists are no longer the first-line treatment for RLS for many patients. This is due to the combined risks of augmentation and impulse control disorders with the dopamine agonists.
●Please remember to advise patients about the risks of augmentation with any of the dopaminergic medications, especially carbidopa-levodopa. You should also warn them about withdrawal from dopamine agonists, which can cause worsened RLS symptoms and poor sleep.
●Advise patients about the risk of developing impulse control disorder when taking any dopamine medication. Counsel family members to watch for changes in behavior. Impulse control disorder can result in impulsive gambling, shopping, eating, illicit sexual activities, and even unwise financial investments such as compulsive day-trading stocks. Impulse control disorders have destroyed life savings, marriages, families, and careers.
●Remember that iron replacement is suggested by guidelines for patients with RLS who have a ferritin ≤75 ng/mL, which is a higher threshold than what is used to define iron deficiency.
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