Coming home from his first cruise holiday — a trip to Alaska — Rudy Hoffman couldn’t sit down.
For the entire five-hour flight from Vancouver to Toronto, he stood, or paced the aisles.
“I had to stand all the way to Toronto because the feeling in my toes, I couldn’t stop it,” he said.
Hoffman, a 69-year-old from Mississauga, Ont., has suffered from restless legs syndrome for around five years.
The condition, which affects somewhere between five and 10 per cent of Canadians, according to most estimates, is characterized by an uncomfortable sensation and need to move your legs, especially during long periods of sitting, like a flight, or at night.
“My wife would describe it as flying off the bed,” Hoffman said. “I’d have to get up and the relief that I would get would be by walking a lot. So, a pacing the house kind of thing.
“It ends up to be a lot of loss of sleep. And so, you know, I’m constantly tired all the time, obviously.”
Doctors aren’t sure what causes restless legs syndrome (RLS). There appears to be a genetic component — it runs in families, according to information from the National Institutes of Health.
“We do know that it may relate to iron or dopamine deficiency or at least deregulation in the brain itself,” said Dr. Philippe Rizek, a neurologist and movement disorder specialist with Trillium Health Partners at Credit Valley Hospital in Mississauga.
It can also be connected to underlying health problems, like impaired kidney function, or even conditions like pregnancy, according to Dr. Mark Boulos, a sleep neurologist at Sunnybrook Health Sciences Centre at the University of Toronto.
Patients usually describe the feeling as a “creepy, crawly, uncomfortable, deep sensation within the leg,” he said. In order to be diagnosed as restless legs syndrome, that sensation needs to be worse at night, largely go away during the day, and get better when patients move around.
The sleep disruptions it causes can be related to impaired mood, Rizek said.
“Depression can develop as a consequence of people having significant disruption in their daytime productivity due to the sleep disturbance associated with this.”
A study published in August 2019 even found an association between restless legs syndrome and a higher risk of suicide and self-harm.
Constantly thrashing in your sleep or having to get up is also “not very good for your marriage or your relationship,” Boulos said.
“I think any time any set of symptoms is bothering you enough that you can’t sleep or it’s affecting your day-to-day life or that of your partner, then I think it’s a good idea to get checked out,” he said.
Doctors will first try to determine whether there’s something else causing the restless legs symptoms, he said, such as an iron deficiency or nerve problems in the legs. Some medications, like certain antidepressants and Gravol and other anti-nauseants, can worsen symptoms.
These sorts of causes can have a relatively easy fix: treating the underlying condition.
For people whose restless legs don’t seem to be linked to another condition, some simple things like restricting caffeine intake and getting regular exercise can help to reduce symptoms, Rizek said.
At other times, the doctor might prescribe medication to help. Some of the medications used for RLS are the same as for Parkinson’s disease, Rizek said, though they’re prescribed in much lower doses.
In some cases, when a patient has been on a medication for a long time or is given too high a dose, their symptoms can actually get worse, he said — a phenomenon called “augmentation.” If this happens, doctors might need to readjust their medication or figure out other drugs or treatments instead.
Hoffman has found that with his new drug regime and lots of exercise, he’s able to keep his symptoms at bay.
He says that fellow sufferers shouldn’t lose hope.
“Don’t lose faith and keep pursuing it,” he said.
“It was a long road for me, but I just knew there had to be an answer somewhere, and I kept with it.”