Updated: May 26
May is MS Awareness Month
Insomnia and daytime fatigue are common problems (and much of what follows applies to anyone struggling with inadequate sleep). But if you’re living with Multiple Scleroses, it’s significantly more likely that you’re struggling with poor sleep. Approximately 40% of people with MS experience chronic insomnia (chronic means at least 3 nights/week for at least 3 months). This is double that of the general population (20%).
MS fatigue can be debilitating. In fact, more than 1 in 4 people with MS describe fatigue as their worst MS symptom. Unfortunately, there are few treatments for fatigue. Stimulants are often prescribed and some people find them helpful. Frustratingly, a common side effect of stimulants is insomnia.
If this sounds like you, you don’t need me to tell you how unfair it is to live with extra insomnia on top of extra fatigue. Insomnia tends to be such a vicious cycle at the best of times. Unfortunately, many of the things that can help improve sleep can be even more difficult for people with MS.
First the bad news (don’t worry, good news coming up!). The neural damage and disruptions in neurotransmitters seen in MS can directly and indirectly impact regulation of sleep and wakefulness. Additionally, symptoms, such as pain, muscle cramps, urinary and bowel symptoms and temperature dysregulation can also disrupt sleep. On top of that, some medications used to help manage MS symptoms can have side effects, such as worse daytime fatigue – or even insomnia, fueling the vicious cycle. (Disclaimer: I’m not a physician. Please consult with your doctor.)
Some helpful things to improve sleep include getting lots of exercise, outdoor light during the day and avoiding naps. Unfortunately, with up to 90% of people living with MS reporting struggling with daytime fatigue, naps may often be a necessity to get through the day. However, like stimulants, naps tend to come with an increased risk of insomnia.
As well, due to the hardships and uncertainty of life with MS, anxiety and depression also tend to be more prevalent, compared to people without MS. Though certainly not the only causes, anxiety and depression often trigger or sustain insomnia, further fueling the vicious cycle, because insomnia also causes anxiety and depression! Yes, it’s a 2-way street.
Now for the good news. If you’re living with MS and poor sleep, there may be things you can do to improve your sleep. And the better news is that improved sleep can improve many other symptoms along with it. Whether you have MS or not, improved sleep commonly helps improve numerous symptoms, such as:
Ability to cope with stress
Headaches and migraines
Chronic pain – yes, pain!
Fatigue and daytime sleepiness
But how to start breaking down this vicious cycle to get from A to B? The gold-standard in therapy for chronic insomnia is cognitive behavioural therapy for insomnia (CBT-I). It is recommended as first-line treatment for this common disorder. And it can be very effective. In fact, research finds it to be as effective as sleep medication within a few weeks, and even more so in the long run.
But what about people with MS? Exciting new research found that it helped people with MS significantly improve:
There was concern initially that people with MS might have more difficulty tolerating the treatment. But that was not the case. There was a high rate of tolerance and follow-through among the study participants.
Other interesting research shows promise for using light therapy as a possible treatment for MS-related fatigue. You may have heard of light therapy for seasonal affective disorder (some people are prone to depression during the dark winter months, when there is less opportunity for light exposure). But research has found it can be helpful for improving the fatigue that often comes with depression, as well as fatigue caused by a number of different medical conditions, including Parkinson’s, brain injury, and cancer. (*IMPORTANT: Light therapy can have dangerous side effects for some people. See below.) Recent research has begun exploring whether light therapy may also be helpful for MS related fatigue – and the results are promising.
While this study also found that placebo light resulted in improved energy, they are calling for additional research to explore how light and other behavioural changes – those often included in CBT-I – might help improve quality of life for people living with MS. And for most people in general, getting outdoor light is good for the soul – and can improve energy levels, as well as sleep.
I’m not surprised by the findings of these studies. Better quality of sleep results in the deep restorative stages of sleep, which is the stage of sleep most responsible for things such as cellular repair and reducing chronic pain. With better sleep comes improved energy, which in turn can help not only reduce the need for naps, but also make it more possible to increase exercise. And these two changes, of course, can help further improve sleep. You can see how the vicious cycle can, at the very least, be minimized.
MS is a challenging life circumstance, often made more difficult with insomnia. For MS Awareness Month, let’s raise awareness that relief of some symptoms may well be within reach.
* Light therapy can have dangerous side effects for some people. For example, it should not be used by people with certain eye conditions, can interact with some medications, can trigger episodes of mania in people with bipolar disorder and cause migraines, to name a few. Please be sure to discuss with your physician before considering any medical or behavioural changes, including light therapy.
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Looking for more strategies to improve your sleep and fatigue? Send me a message to join the waitlist for one-on-one CBT-I. Or get started right away by signing up for my online self-paced course on Effective Natural Strategies for Chronic Insomnia.
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