Pretty much everyone with Multiple Sclerosis has experienced or has to deal with fatigue but what is fatigue? Fatigue is not just “feeling” tired; there are different types of fatigue with different causes. They may feel the same but describing the difference is almost too difficult for most people. Trying to describe the subtle difference between the different types of fatigue is like trying to describe the difference between two different shades of one color. Pastel blue VS aqua blue. That can be much more difficult than describing the difference between two different symptoms or two completely different colors. Fatigue VS insomnia and blue VS orange.
So what causes fatigue in Multiple Sclerosis? Well first we need to have an understanding of what fatigue actually is. As I said before, fatigue is not just feeling tired. We feel tired after doing hard work that burns off all our “fuel” (energy) whether it is physical work (cleaning the house, yard work, a job, etc) or mental work (paying bills, managing appointments, school, etc). Keep in mind we all have different sized “fuel tanks” meaning, everyone has a different capacity for how much energy they have to work with throughout the day and when we use all that fuel up (some faster than others) we feel tired. MS Fatigue is basically the result of running out of energy due to MS symptoms keeping you up at night or because any given task uses more energy than it should. Taking out the trash may feel like running a marathon! Why? Well that is not entirely known. The last form of fatigue is called lassitude and is unique to people with MS. It is fatigue that occurs for no reason at all generally on a daily basis even after a great night of sleep that should leave you feeling energetic for the day. Fatigue that is caused by exposure to heat or humidity is also considered lassitude. Lassitude generally feels more severe than fatigue and worsens as the day goes on making it much more difficult to complete your daily tasks. So MS-related fatigue can be caused by symptoms burning energy, tasks requiring more energy than they should, or for no apparent reason at all! The National MS Society says that about 80% of people with MS experience some form of fatigue making it one of the most common MS symptoms.
Most people living with MS have also experienced insomnia; difficulty falling or staying asleep. Ironically many people even experience both fatigue and insomnia at the same time! Feeling exhausted all day only to lie down wide-awake staring at the ceiling all night! Much like there are different types of fatigue there are also different types of insomnia or rather, different causes of insomnia. Can you not sleep because your mind starts racing when you lie down? MS can obviously cause all sorts of stress or depression. Maybe you can’t stay asleep because you have to wake up to use the restroom every hour? Perhaps leg pain due to spasticity is keeping or waking you up all night. Of coarse insomnia could also just be the result of where a brain lesion is located but I know for me and many others it has to do with fatigue itself. It’s a “vicious cycle”, you see, if I (for example) am feeling fatigued all day I may not want to do anything but just sit around all day or even take a nap. Then when it comes time to try to shut off for the night I can’t because even though I feel tired I already rested or slept all day, which makes it more difficult to turn my brain off! I imagine that I have a tank full of fuel that I didn’t burn off during the day so even though I want to sleep my body still wants to burn off that left over fuel! And so, I am exhausted all day but unable to sleep at night because I didn’t do anything all day!
Managing Fatigue and Insomnia (At a Glance)
There is no “general” solution to MS-related fatigue and insomnia; everyone will have a different method of managing these two symptoms that may create a vicious circle. You may be tired because you could not sleep at night and maybe you could not sleep at night because you slept during the day because you were so tired from not being able to sleep at night! This is one of my main issues when it comes to fatigue and insomnia and I would be lying if I said that I found the perfect solution to manage this and no longer deal with this issue. I do however, know what sometimes works for me but though I might be able to break that vicious circle it is very easy to fall back into it and getting back out seems to be so difficult and that of coarse… fatigues me…
Managing Fatigue (At a Glance)
I have found that in order to break my cycle of fatigue and insomnia I have to overcome one symptom first which slowly makes it easier to overcome the other but it is really hard at first. For me, I try to beat fatigue one day in order to make it easier to sleep that night which means fighting the urge to lie down and instead staying awake all day. This usually requires a combination of medication, fatigue management techniques and will power to burn energy without letting myself sit around all day or take a nap. Medication such as Provigil, Nuvigil, Amantadine, Ritalin, or even things such as Adderall and Dexedrine have been reported to help fatigue. I have tried most of these medications but I build a tolerance to them really fast and they eventually just stop working for me. I try really hard to reduce my exposure to heat and to try to manage my stress because those two things really seem to affect my own MS symptoms. Seeing an Occupational Therapist (OT) or Physical Therapist (PT) can also be really beneficial as they teach you different methods of more easily completing tasks to help conserve energy.
So after a pill, a cup of coffee (I will talk about how caffeine affects MS in a later article) and staying busy while trying to conserve energy all day I can usually go to sleep at night. Trying to burn off energy all day is not always enough though. Sometimes my thoughts are just so loud that even though I am physically exhausted I am mentally wide-awake! This is when I turn to medication.
Managing Insomnia (At a Glance)
There are so many medications that can help you sleep I cannot even list them all! A few “popular” choices are Clonazepam (Klonopin), Lorazepam (Ativan), Temazepam (Restoril) or even Diphenhydramine (Benadryl and most over the counter sleep aids). Which medication will help you depends on your situation. Medication to help insomnia that occurs for no reason may not be necessary for insomnia due to a secondary reason (a symptom) keeping you awake such a having to get up to use the restroom. Maybe all you need is something like Oxybutynin (Ditropan) to help control your urge to use the bathroom. If you can eliminate symptoms keeping you awake perhaps that is all you need to do to get a full night of sleep?
Before racing to medication I would say you should try to create a routine to help your brain recognize that it is time to sleep and to help manage symptoms that could be affecting your ability to sleep. Perhaps two hours before you want to sleep you stop drinking liquids so you do not have to get up all night to use the restroom? Turn off or dim all the lights (and get off your phone, the TV and the computer) one hour before you want to sleep as light tells your brain not to produce melatonin. Melatonin is what tells your brain it is time to sleep and you can actually buy a supplement of melatonin to help teach your brain what time it should start shutting down. Melatonin does not induce sleep it just tells your brain when it is supposed to sleep, which is why it is commonly used for Shift Work Sleep Disorder.
Personally I try to avoid medication simply because I do not like taking pills to fall asleep and then more pills to stay awake. So first I try to cut off my exposure to light an hour before I plan on going to sleep. I try not to use any electronics that produce light (and keep my mind ticking) about 1-2 hours before sleep. I make sure not to drink anything about 2 hours before I plan on sleeping. I use all sorts of white noise (such as a fan) to help distract me when I lie down and I also use a sleep mask to help keep every bit of light from getting to my eyes. That usually does the trick for me and of course no caffeine about 5 hours before sleep.
That is it For Now
There are so many medications and techniques used to help stay awake and asleep that I could (and probably will) write separate articles focusing on each one individually because I just could not get to all the details in just one article. Hopefully now though, you have a basic understanding of the relation between the two symptoms and how one cane make the other worse. What are your own experiences with fatigue and insomnia? How do you manage these symptoms or the things that can cause them? Share below!