One of the most commonly reported symptoms of multiple sclerosis is fatigue. So it’s no surprise that those suffering with MS may hear that they need to get some rest. Indeed, many suffering from MS will certainly try to get some rest and will end up failing miserably at that endeavor because of what I like to call “Painsomnia”. Painsomnia is the inability to sleep or rest because your body is in pain. It’s something that affects a large number of those with chronic illness, myself included, and it can make the normal fatigue we suffer from even more unbearable.
There is a popular meme that is often distributed on social media that reads that “It takes people with MS five times more energy than people without MS to complete a simple task”. I don’t know if that is scientifically accurate but I can certainly attest to it feeling that way. Life with MS is draining! On top of the fatigue (which feels like trying to go through life while constantly swimming in quicksand), everything seems to exhaust me much quicker than it did prior to getting this disease. I was once a ball of energy that seemingly never needed rest or sleep. These days, I’m the opposite of that. I grind to a halt fairly quickly, faster if the weather is warm.
The thing with MS fatigue is that most of the time, no amount of sleep is going to help. You’ll still have to slug through many days and fight through it as best you can. However, that fatigue is made exponentially worse when you can’t get a good night’s sleep. To really survive that crushing fatigue, you need a good foundation of rest that is, unfortunately, very hard to get because of the MS-related pain that many of us experience.
For some, the pain is a burning sensation, like our bodies are on fire from the inside out. Others experience a dull but constant throbbing, or numbness, or even tingling. It may not even be what you normally consider pain, it could just start as a feeling in or on your body that doesn’t hurt per se but becomes intensely annoying. I have at times had a sensation where my legs felt like they were soaking wet, even though they were bone dry, and had been all day. Others develop an itchy feeling that they can’t find relief from. For many, spasms are another issue that just won’t let up at night. There are a wide range of different pain and sensation experiences that can affect our ability to sleep. I lump them all under my “Painsomnia” classification. No matter how it feels, it’s a physical sensation that makes it hard to sleep, hard to even get comfortable.
No tossing, turning, or counting of sheep seems to help. Laying in bed in pain really only makes you focus on it. That’s what happens to me after a while: no matter what I try to think of, my body won’t let me be distracted. It’s enough to drive a person crazy! All while your body feels beat up, sluggish, beyond tired, like you just spent a day doing hard physical labor. All you want to do is lay down, close your eyes, and drift away. But you can’t. Can you imagine being incredibly exhausted yet unable to sleep? It’s truly awful. All the while, you know how extra exhausted you will be the following the day. For people that deal with fatigue on such a regular basis, it seems like an especially cruel punishment to not be able to sleep.
People do their best to battle painsomnia, though none of the methods are exceptionally effective. Some utilize medications to help get relief from the pain or spasms. Others, like myself, who have exhausted many medications, rely on medical marijuana. And still others will utilize a sleeping medication, whether over the counter or prescribed. There are cons to each of those though, from unwanted side effects, to being costly, to adding additional grogginess the following day. I sincerely hope to hear from others in the comments on how they battle this common issue. If you’ve got a great solution, I’m sure many of us could benefit from hearing it, so please share!
Thanks everyone! – Devin