After a long and possibly pain-filled day, what anyone with MS wants is to fall asleep. But sleep is often difficult to achieve. For many people, the pain of MS either gets worse at night or fails to quiet down, keeping them awake.

This is called painsomnia. To find out more about how it shows up for folks in the community, we reached out on the MultipleSclerosis.net Facebook page and asked: “Have you ever experienced painsomnia (the inability to sleep or rest because your body is in pain)?”

More than 400 community members shared. Here is what they said about how and where painsomnia affects them.

Every night

The most common response to our question was that people deal with painsomnia every night. It is an ongoing problem that makes bedtime a dreaded event – and the stress of that can make falling asleep even more difficult.

“Every night I feel pain in my feet. I do not know if it is neuropathy. But it feels like if I move my foot, it would break off. Why does it happen when I lie down to rest? All my joint pain intensifies. I feel numbness, too. Most nights it is 2:00 or 3:00 AM before I can go to sleep.”

“Yes. Every day for the last 2 years. It is oppressive and miserable!”

“Every. Damn. Night. My legs and feet hurt the most. This last year or so, I have started waking up with 1 or both of my legs numb from my hips to my toes. My hands go numb every night too. Bedtime sucks.”

Only some nights

For others, painsomnia only happens on some nights. Some people explained that it can actually be more of a challenge to tackle this problem if you do not already have a routine or treatment in place.

“Some nights more than others!”

“Yes! Just last night. It does not happen often.”

Cannot stay asleep

Many people in the MS community shared that while they can fall asleep, this pain wakes them up in the middle of the night. After they are awake, the pain makes it so they cannot get back to sleep.

“I sleep for very little time, and I am awake by 5 am every day.”

“Yes, all the time. I have been up since 2:30 AM from pain, along with the MS hug this morning.”

“Yes, I cannot stay asleep, which just adds on to the MS fatigue.”

Mostly in the limbs

The overwhelming majority of people who responded said that they feel the pain in their limbs – the arms, legs, hands, wrists, and feet. The pain can show up as a burning feeling, numbness, or even spasms.

“Arms, hands, and spasms in my legs. Usually 2 to 3 hours after lying down.”

“Burning pain in my right hand/wrist/arm/shoulder.”

“Yes, mostly from leg cramps and bad back pains, but also it just hurts all over.”

“Mine is numbness and tingling in my arm.”

“Usually in my one heel, but recently it has started in my hands.”

“My legs and feet hurt the most. My hands go numb every night, too.”

Shows up as pain where lesions are

The second most common response was that the pain appears where lesions are. MS lesions often show up as scarring around the central nervous system, including the spinal cord. It makes sense that people with MS can feel that burning and tingling pain in the neck or back.

“I feel it in the top of my neck, where I have a large lesion.”

“Yes. Back pain where my lesion is. I cannot stand it.”

Did not know it had a name

We cannot heal what we do not recognize. Many respondents did not know that there was a name for sleep issues due to the pain of MS. Sharing our experiences helps others know they are not alone. Realizing painsomnia exists is often the first step toward reclaiming a good night’s sleep.

“Just about every night, but I did not have a clue it had an official name.”

“Yep, and now I have a name for it.”