Sometimes it hits while sitting in the living room, sometimes once in bed. In fact, in my experience, bed is worse as it often prevents me from getting to sleep. What is it? Restless legs syndrome (RLS).
Apparently, and these figures are not being quoted from exact research, people with multiple sclerosis, like me, are about five times more likely to have RLS than those in the general population and just over 30% of people with MS also have RLS.
We find various ways of overcoming, or at least relieving, the problem of getting to sleep including various prescription medications.
Generally, depending on the frequency of RLS troubles, these actions may be helpful:
- Avoid caffeine, alcohol and nicotine
- Gabapentin (Neurontin) might be good for people with MS, as it is fairly well-tolerated and used for spasticity and neuropathic pain symptoms of multiple sclerosis.
- Low potency opioid-based drugs or opioid agonists, such as propoxyphene napsylate, ropoxyphene hydrochloride, codeine or tramadol, may be tried, but be careful as they may contribute to daytime fatigue.
In my case, the analgesic co-codamol has worked so far although what the future holds there is no way of knowing.
So, exactly what is restless leg syndrome? According to UpToDate, an evidence-based, physician-authored clinical decision support resource which clinicians trust to make the right point-of-care decisions, “Restless legs syndrome refers to symptoms of spontaneous, continuous leg movements associated with unpleasant paresthesias. These sensations occur only at rest and are relieved by movement. Sleep disturbance and a frequent association with involuntary, jerking movements of the legs during sleep, known as periodic leg movements of sleep (PLMS), are common.”
It also says: “Mounting evidence suggests that RLS is associated with multiple sclerosis (MS)” but admits that data is conflicting.
Restless legs syndrome is diagnosed when the following criteria are met:
- There is an urge to move the legs (usually caused by or accompanied by uncomfortable or unpleasant sensations in the legs).
- This urge to move gets worse when you are still, usually lying down, but can also occur when sitting.
- Moving around relieves (at least partially) the urge to move or unpleasant sensation, while the movement continues.
- The urge is much worse at night than during the day.
As RLS causes loss of sleep, it surely has an impact on MS-related fatigue. While good sleep might not eliminate fatigue, a sleepless night due to restless legs syndrome may mean the difference between ‘getting by’ and complete inability to function. Technically, this is called secondary fatigue as the tiredness is a result of other symptoms, ie RLS.
UpToDate explains: “The primary cause of fatigue for people with MS, however, is the demyelination of the disease process of MS itself. Much of what those of us living with MS are feeling is called ‘lassitude’, which is an overwhelming tiredness that is not directly related to increased activity. This is the terrible, impossible-to-explain, crushing exhaustion that is one of the most common symptoms of MS.”
This is the first in an occasional series of posts touching on conditions often associated with multiple sclerosis.