Access to specialists in RLS, either neurologists or sleep specialists, can be limited for patients. With this in mind, you’ll want to make sure that you’re getting the most out of each doctor’s visit and that you’re able to effectively communicate your symptoms and concerns to your doctor.
Write Everything Down
Write down your questions beforehand so you don’t forget them when you get to the doctor, suggests Pamela Santamaria, MD, a neurologist and specialist in RLS at Nebraska Medical Center in Omaha. Also bring a list of your symptoms, as people often have a hard time putting words together at the doctor’s office. “Tell the doctor when it first started, when it bothers you,” she says. “RLS can bother some people all day long. Describe to the doctor where it affects you, what makes it worse, what makes it better, whether you have any underlying medical problems.”
Line up someone to go to the appointment with you in case you do get flustered and forget what the doctor says. “Take along your bed partner if possible because he or she will be able to tell the doctor if you have leg movements you’re not aware of during sleep,” says Dr. Santamaria.
“You need to make your case quickly when you get to the doctor,” says Michael Sellman, MD, Chief of Neurology at Mercy Medical Center in Baltimore. “Specialists are very busy and will interrupt you after about 25 seconds of talking.” Don’t let the doctor minimize your RLS. Sellman suggests that you be organized and emphasize to the doctor that your RLS is a very troubling problem that you want examined in more detail. Make sure that at a minimum the doctor orders a blood test for your ferritin level, as iron deficiency is the most common reason for RLS. If you feel the doctor isn’t taking your complaints seriously, see someone else.
Ask Your Doctor:
The Mayo Clinic has come up with these helpful lists:
- What is the most likely cause of my signs and symptoms?
- Are there any other possible causes?
- What treatment options are available?
- Are there any nutritional supplements that might help?
- If you’re recommending medications, what are the possible side effects?
- I have these other health conditions. How can I best manage them together?
- What self-care steps are likely to improve my symptoms?
- Do you have any educational materials I can take with me or websites you recommend?
- Where can I find a support group for people with restless leg syndrome?
Be prepared to answer these questions from your doctor:
- What are your symptoms?
- Would you use words like crawling, tingling, cramping, creeping, itching, pulling, or tugging to describe your symptoms?
- Do your symptoms tend to occur when you sit or lie down?
- Are your symptoms worse at night?
- Do your symptoms cause an irresistible urge to move your legs?
- Does movement make you feel better?
- Does anything else improve your symptoms?
- Have you been told that you kick, shake, or otherwise move your legs while sleeping?
- Do you often have trouble falling asleep or staying asleep?
- Are you excessively tired during the day?
- How is your sleep loss affecting your performance at school or work? Your personal relationships?
- Is anyone else in your family bothered by restless legs?
- Have you been diagnosed with any other medical conditions?
- What medications are you taking, including prescription and over-the-counter drugs?
- How much caffeine and alcohol do you have each day?
- What is your typical exercise program?
The doctor should be thorough, and also ask you about other conditions that may be related to or causing your RLS, such as peripheral neuropathy, polyneuropathy, nerve injury or trauma, or a bad back, all of which can cause symptoms that mimic RLS. If you are overweight or snore, ask the doctor if your RLS might be related to sleep apnea. Let the doctor know if you have fibromyalgia or any other condition that you think might be related to RLS.
Be prepared to go for a sleep study if the doctor thinks it’s necessary to sort out exactly what’s going on. Dr. Santamaria often orders sleep studies to monitor how much movement goes on in the legs during the night. “It’s a very treatable disease,” she says. “It’s just a matter of getting to a physician that’s aware of the disease, who knows how to treat it and which medications are appropriate.”