Deb loves the great outdoors, and her adventures have taken her biking, kayaking, snow-shoeing, skiing, camping, traveling the U.S. and worldwide, along with theater and symphony viewing at home. But over time, her RLS symptoms gradually became more severe, eroding her peace of mind and interfering with some of the activities she enjoyed most.
“When I tell people I have Restless Legs Syndrome, they usually say ‘Yes… so?’ because they don’t understand how much it affects my life,” Deb says. “Because of my RLS, I’d stopped doing things in the evening. Any time I had to sit quietly for an extended period of time, I’d have to swallow pills to make it tolerable. It also made me uncomfortable sitting near strangers on long overseas flights – wiggling my legs while those sitting next to me attempted to sleep made the long flights miserable for all of us.”
Deb began experiencing the pronounced feelings of agitation and discomfort in her legs, which she calls “the fidgets,” that are commonly diagnosed as symptoms of RLS, in her early 50s.
“Within a year of when the fidgets started, my husband would be getting his sleep interrupted because I’d be up and down all night, walking and twitching,” she recalls.
Although Deb’s husband tried to ease her symptoms by massaging her legs, it didn’t always help. “Most of the time I’d be rubbing my feet together, but I’ve also had nights where I was literally kicking one leg into the air, straight up,” she says. She estimates that her RLS symptoms have been this severe for nearly 15 years.
When she first started experiencing RLS symptoms, Deb turned to her primary care doctor, who prescribed Clonazepam. Later, she read that this particular drug could impact balance for some older patients. She asked for alternatives and was prescribed Requip. At first, she experienced some relief, but then found she began needing the drug earlier and earlier in the day, a sensation that doctors call “rebound.”
Following her retirement, Deb got a new RLS doctor who prescribed Mirapex instead of Requip. That worked for a while, but eventually her doctor also had to add relatively high doses of Gabapentin. Eventually, she was placed back on a low dose of Clonazepam.
About 5 years after developing restless legs, she was diagnosed as having obstructive sleep apnea and began sleeping with a CPAP forced-air breathing machine. Although the CPAP machine helped with Deb’s apnea, her RLS symptoms continued, and her restless movements often dislodged her breathing equipment as well.
Despite all of the medications, which Deb took in various combinations while supervised by her sleep/RLS doctor, the severity of her RLS symptoms continued increasing. “As I aged, I became concerned about the levels of medication I was taking, because the older you get, the harder they are for your body to tolerate,” she says. “And even on full medication, I still had some pretty severe RLS episodes.”
At its worst, she was taking the highest recommended doses of her prescribed medications, as many as 6-8 pills between her three medications in a single night. Yet her RLS continued unaffected by all of these medications about 15 – 25% of the time. It seemed no combination could bring her reliable and consistent relief.
Everything changed for Deb when her sleep/RLS doctor told her about an exciting new medical technology he’d discovered at the Seattle Sleep Medicine Meeting: Relaxis, the first and only non-drug, medical device FDA-cleared for improving the quality of sleep in patients with primary RLS.
Since receiving Relaxis, Deb has used it nightly and consistently experienced relief from her RLS symptoms. After three months of near nightly use, it’s only when she’s traveling by plane and unwilling to trust her Relaxis to her checked luggage or fit it into her carry-on bag that she experiences RLS symptoms.
“Two days into my visit with my family last Thanksgiving, my RLS got so bad, I was screaming and crying into a pillow because my legs were kicking so badly,” she recalls. She resumed using Relaxis promptly when she and her husband returned home, and the relief returned, too.
After 4 months of use, under her doctor’s guidance, Deb began reducing her medication dosages because she’s been getting such great, consistent RLS relief from Relaxis. When using the machine every night, she’s been able to reduce her dosage of Mirapex and has completely discontinued use of Gabapentin and Clonazepam to calm her legs before she can sleep.
For those times when she flies or goes camping at non-electric campsites, Deb has to rely on medication alone. It’s been tricky because she is working with her doctor to reduce her medications further, but finds that she needs to increase medications when she does not have Relaxis with her on her travels. She’s currently doing some at-home trials, trying some evenings without Relaxis to see how she might need to adjust her medications for when she’s away from home and has to manage without Relaxis.
Deb’s goal with regular Relaxis use while at home is to continue reducing her RLS medications to the lowest levels possible. Away from home and without Relaxis, her goal is to minimize her need for temporarily upping her medication dosages, even if it’s just temporary. “Relaxis has changed the way I consider sleeping – from a fear of ‘I hope I don’t spend the night kicking/disturbing my husband’ and anxiously remaining awake, to looking forward to going to bed for a good night’s sleep,” she says.
“Relaxis has certainly helped with my reduction of RLS medications, which is remarkable for someone like me, who has a rather extreme case of RLS.” Deb says. “Many nights I don’t even have to finish a full cycle. I can shut Relaxis down because I’m already falling asleep and my legs have stopped bothering me. Relaxis has been amazingly helpful.”
– Deb B. (Fort Collins, CO)