How Painsomnia Affects Sleep and Where in the Body It Shows Up

MS painsomnia

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.”

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Community Views: Advice I Would Have Given Myself at Diagnosis

Advice for MS diagnosis

Multiple sclerosis (MS) often feels overwhelming at the time of diagnosis. Feeling powerless may be your first reaction. Yet, as you live with MS, you find strength and coping strategies.

Everyone needs tools for the journey. We recently asked the Facebook community, “If you could go back to the day of your diagnosis, what advice would you give your younger self?” We have compiled some of the shared wisdom below.

Get a second opinion

One important tip you shared was to see an MS specialist for your care. While your primary care physician (PCP) is a good starting resource, having someone who specializes in MS is vital. Specialists will be current on the latest research and are your best asset for managing the disease.1

“Get a second opinion with a doctor that specializes in MS right away.”

“I was referred and told it would be a 6-month wait by a doctor I respect. I turned out to be 9 months and worth the wait.”

Mental Health

Being diagnosed with MS can have a significant impact on your mental health. Having a chronic illness creates all sorts of turmoil as life and abilities change. Caring for your mental health at the outset of the disease helps you manage long-term.

“Depression has been harder for me than the MS! Get a good therapist and investigate the meds.”

“Mental health is just as important as physical!”

Treatment

The community also shared the importance of developing a treatment plan with your doctor from the start. Getting MS into remission and keeping it there involves making a plan and staying consistent with it.

“Get on treatment and STAY on treatment.”

“Start on relapsing-remitting drugs as soon as possible.”

“When you go into remission, be sure to keep taking your medication even if you feel fine.”

Move your body

Getting regular exercise helps manage MS symptoms. Gentle exercise can improve strength, mood, bowel and bladder function, and bone density.2 Many of you shared what a difference regular movement makes with this disease.

“Do the yoga, do it now and keep doing it.”

“Stay as active as you possibly can. Keep your muscles in shape.”

“Walk while you still can.”

Lifestyle changes

Living with MS involves adapting your lifestyle to accommodate the changes. Some of you prioritize your “bucket list” in the early years of having more stamina. You also learn to slow down and listen to your body to avoid exacerbations.

“Eat right. Stay hydrated. Stay away from stress.”

“Don’t try to get everything done before getting too fatigued.”

“Do whatever you dream of now because you might not be able to do so later on.”

“Be willing to adapt. Your future husband will NOT fold towels the way you do – and that’s okay, he’s trying to help.”

Keep living

One of the most crucial things you shared was focusing on enjoying life. Life does not end with an MS diagnosis. It will change, many days will be hard, and yet, as you reminded us, “Your disease doesn’t and never will define you!!”

“Stop worrying about what MIGHT happen and focus on the good in life.”

“Don’t assume you will follow the path of someone else; everyone is different.”

“It will be OK. OK may just look different, but it will still be OK.”

“You are still you and always will be. This is just a detour in your life’s journey. It is NOT the end of the road, but rather the beginning of a new one.”

References:

1. Cavallo M. Neurologists and Specialists of MS. MS Focus Magazine. Available at https://www.msfocusmagazine.org/Magazine/Magazine-Items/Posted/Neurologist-and-Specialists-of-MS. Accessed 5/25/2021.
2. Exercise. National Multiple Sclerosis Society. Available at https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Exercise. Accessed 5/25/2021.

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Community Views: Managing a Flare

Prepare for MS flare - an illustration of an MS flare

Part of living with multiple sclerosis (MS) is dealing with flares. A flare, also called a relapse, is when MS symptoms recur or worsen.1 The change in symptoms lasts for at least 24 hours, but often much longer.1 Flares throw a wrench into daily life and plans. They are challenging to manage. Curious about how you handle flares, we recently posed this prompt to our MultipleSclerosis.net Facebook community: “You feel a flare coming on. What is the first thing you do?”

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MS with Arm Weakness and Spasms

For many people in the MultipleSclerosis.net community, Anita Williams’ article was a game-changer. Williams wrote openly and honestly about how this diagnosis affects her arms

This is something that is not often talked about in the community. But it seems it should be. This article stirred the community, leading folks to realize they are not alone in facing this symptom.

To dive deeper into what this issue looks like for community members, we reached out on the MultipleSclerosis.net Facebook page. We asked, “Foot drop is a commonly discussed MS symptom, but what about arm drop?”

More than 400 people commented. Here is what was shared:

Understanding of the issue

An overwhelming number of folks with MS shared that they have arm spasms and lack of functioning in one or both arms. Many did not realize that other people with MS deal with this same problem. Several thought their arm problems were due to their physical jobs and not a result of MS. There is comfort in people knowing that they are not alone and in finding out the real cause.

“I completely understand this kind of pain and, before reading this article, felt I was alone. It is comforting to know that I am not.”

“For the longest time, I thought I knew no one with arm problems like mine.”

“I thought it was just me who dealt with trouble in my arm.”

Dropping things constantly

For many community members, this shows up as dropping things at unexpected times. Many with MS cannot trust themselves to hold anything – coffee, keys, or even a baby. Some have adjusted by buying things that can withstand being dropped, like protective cases for cell phones.

“I hate dropping things.”

“I have been using plastic dishes for a very long time. I drop things more and more.”

“I will never have a phone without an Otter box and insurance on it thanks to this.”

Dealing with limited functionality, especially when arms are overhead

This issue can affect someone with MS by making it difficult to raise their arms overhead for more than a few moments. This can make it a challenge to blow-dry hair or put away groceries. Some community members do chores in short bursts with lots of breaks so their arms do not get tired.

“I cannot raise my arm all the way up.”

“I get where my fingers get stuck and I cannot move them. It actually hurts I have to pry them apart with my other hand.”

“If I hold my arms up, they start feeling weak.”

Having the problem only on one side

Many who deal with these symptoms find that only 1 arm is affected. The good news is that this leaves 1 arm with full function. But this also means learning how to work with 1 reliable arm. Some learn to use their non-dominant arm, which takes some getting used to.

“I have learned to do most stuff left handed, except writing.”

“Happens with my right hand and arm. Most of my issues are on my right, dominant, side. I cannot keep track of how many cups of coffee I have spilled because it is ingrained into my brain to use my right hand.”

We want to say thank you to everyone who shared for this story. Thank you for being a part of this community and showing so much support for one another.

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Community Views: The Strangest Comments Heard by the MS Community

If there is any doubt that multiple sclerosis (MS) is one of the most misunderstood diagnoses, then all one has to do is be a fly on the wall when someone with MS shares that they are living with the condition. 

To find out more about all the ridiculous things people say when they learn someone has MS, we reached out to followers of our Facebook page. We asked community members to tell us: “What is the silliest, funniest, or most face palm-ish response you have heard when you told someone you have MS?” 

Responses from more than 300 community members poured in. Here are some of their answers.

It is your fault you have MS

Doctors are not sure what causes MS. They believe it is triggered by a combination of factors, such as genetics, an abnormal immune response, and environmental factors. Still, that has not stopped some people from blaming MS on someone’s lifestyle, dietary choices, or even negative thoughts. Many in the MS community have been accused of living their lives in a way that made them responsible for getting MS, which is not the case at all. 

“My sister once told me that it was my own fault that I have MS. That I should have taken better care of myself.” 

“I had one girl tell me it was because I watched the news and ‘took that negativity into my body.’ All I have to do to be cured is change the channel?” 

“When I was first diagnosed, the on-call neurologist at the ER said it was my fault because I was not taking vitamins as I should be after gastric sleeve surgery.” 

“Do you think you did something to cause it?” 

That someone is too young – or too old to have MS

Curiously, community members shared that people have told them they were too young or too old to have MS. Most typically, the diagnosis shows up between the ages of 20 and 40, but that does not mean it cannot show up sooner – or later. MS does not discriminate based on age.

“I was in the hospital after just being diagnosed when my aunt said to me ‘You are too old to be diagnosed with MS. Uncle Ronnie was diagnosed at a younger age. You do not have MS.’ I was 44. She still refuses to acknowledge I have MS.” 

“You are awfully young to have that.” 

The right diet can cure MS

So many people shared that strangers are more than eager to comment on their diets, even if they do not know the person well. Diet does not cause MS, nor can diet cure it. 

“A ketogenic diet will cure MS and Hashimoto’s! I have Hashimoto’s too.” 

“You should change your diet. This from someone who has no clue what I eat.” 

“Have you tried cutting out those artificial sweeteners from your diet?” 

“You just need to cut out sugar!” 

Other things can “cure” MS

Yes, there are medicines that can bring relief from symptoms and slow the progression of MS, but there are no cures. A few community members shared that people have suggested some rather unusual “cures” for MS

“Years ago, my friend’s boyfriend asked me why I could not just have the lesions on my brain and spine removed to fix the problem?” 

“They said they had it too, but their MS was cured. I said there was no cure. She said she was cured because her ‘myelins’ were adjusted.” 

Thank you to everyone who offered answers. It is our hope that people who read this better understand what it is like to have MS thanks to your willingness to share your experiences.

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Community Views: What Society Believes About MS and Relationships

When MultipleSclerosis.net contributor Anita Williams wrote “Beggars Can Be Choosy” about what society believes about people living with the diagnosis, she hit a nerve. She brought to light many of the negative stereotypes that are often not openly discussed. 

After Williams’ article was shared to the MultipleSclerosis.net Facebook page, it sparked a response from nearly 150 community members. Here is what was shared. 

Having MS does not make someone broken 

Too often, people with MS can believe the lie that having an illness makes them hard to love or accept. There is a societal belief that having a disease makes someone “broken” or somehow “less than.” This is a horrible lie. 

When it comes to relationships, true love is unconditional, not transactional. Loving someone means loving who they are as a person, not loving how many chores they can do, meals they can make, or how much they can do for someone else. That kind of transactional love is not healthy. 

“This is exactly how I was made to feel. It is now 4 years after my divorce, and I now realize that I am a good person and not broken. I will be fine and, God willing, I will find the person who can love me as I am. My ex is the one with the problem, not me. He will not ever find the perfection he is looking for because nobody is perfect. He only thinks he is.” 

“Two days before I married, I was diagnosed with multiple sclerosis. The marriage ended, but not due to my illness. During our marriage, I often heard, ‘Wow, and he still married you?’ Yes, he did.”

A black woman looks lovingly down at her own heart in her hand.

Others believe someone with MS is “lucky” to be married 

So many community members shared that they, like the author, had been told that they are lucky to have a partner. This is never a kind thing for someone to say, nor is it true. Having an illness does not make someone less loveable. Some community members shared that they do feel lucky to have a partner. But truly, everyone who has a partner is blessed to have found love. 

“Ugh, it is true. I do not know how many times I have been called ‘lucky’ to have my partner. I wonder if anyone has ever told him he was lucky to have me. It is doubtful.” 

Both partners are lucky to have one another 

In a true partnership, both people will feel lucky to have one another. Each person brings their own unique gifts. Both people will give to one another, and both will receive – that is what partnership means.

Many in the community shared that they have no doubts about the value that they bring to a relationship. They know that having MS does not limit their self-worth. They also see that their partner is lucky to be with them.

“My husband is wonderfully supportive, as I am to him. A couple of years ago, he nearly died from sepsis and had to have his leg amputated. It was a dreadful time, and he needed a lot of nursing, which, at first, was hard with the MS. But we muddled through together, and I think we are even closer now.” 

“I am lucky to have my partner, and we are lucky to have each other. We take care of each other.” 

“In reality, I know I am lucky to have my husband with me, and he knows he is lucky to have me in his life. It does not really matter what anyone else thinks or says.” 

“Personally, I think he is bloody lucky to have me!” 

“Oh, way to go! I was married over 20 years before I was diagnosed, but I married a man with character, and he knows he is lucky to have me. I am not a victim. MS, nor any other disease, will never cheapen my value.” 

Thank you to everyone who shared. We are grateful to hear from so many community members about your personal experiences.

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Longing for Belonging: Advice from the MS Community

A person looking at the clock on their phone while laying on the couch getting ready to watch a movie.

Living with multiple sclerosis (MS) can be very isolating. This condition often creates feelings of being disconnected from others and the world. Many feel the longing to belong and forge relationships as they could before their diagnosis.

After posting an article written by MS advocate Devlin Garlit, we received an overwhelming response from community members. As Garlit said, Continue reading

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Can Certain Foods Trigger MS Symptoms?

A man mixing a bowl in his kitchen for meal prep, while a stack of food containers are piled behind him.

There is no one way to eat that is going to rid everyone of their MS symptoms. However, many people in the MS community have found that there is a direct link between what they eat and their MS symptoms. While every person with MS likely has a different list of foods they avoid, there is a lot of overlap in terms of the worst offenders.

To start a discussion about which foods make MS worse, we reached out to community members on our Facebook page and asked them to tell us: “Do certain foods trigger your MS symptoms?” Continue reading

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What People with MS Wish You Knew About MS Pain

A woman doubles over and squints in pain, holding her stomach and her back. The background shows the enlarged, abstracted outline of lightning bolts.

Pain can be one of the most challenging things in life to deal with. However, for people with MS, pain is often part of daily life.

While September was Pain Awareness Month, it is important to continue the conversation about the connection between pain and MS. To learn more about the impact of this connection, we asked community members to share their experiences and Continue reading

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Multiple Sclerosis and Communication Issues

A woman and man are having a conversation. The man has his eyes closed and is talking as a paragraph of lines comes out of a speech bubble. The woman's eyes are wide with a broken speech bubble as a completely empty thought cloud lingers over her head.

Although many people think of multiple sclerosis as primarily a diagnosis with physical symptoms, its reach is far more extensive. Since MS begins in the brain, it can impact one’s ability to communicate – namely, it often impairs memory and speech.

To find out more about the speech and memory challenges community members deal with, we reached out to members of our Facebook community and asked “Do you ever suffer from communication issues and expressing yourself with MS?”

More than 550 community members shared. Here is what was said. Continue reading

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