It may come as a surprise to many people that multiple sclerosis (MS) affects eyesight. But those living with MS know it can compromise parts of their vision, including depth perception.
MS affects the muscles in the body, sometimes including the muscles around the eyes. Having eye muscles that are weak or damaged can lead to complications like dizziness or vertigo. Like MS itself, these visual problems get worse with fatigue and stress.1
To find out more about the issues the MS community faces, we reached out on the MultipleSclerosis.net Facebook page. We asked, “Does patterned flooring or wallpaper ever make you feel unstable or put you into a feeling of vertigo?”
More than 200 people responded. Here is what they shared.
Getting a multiple sclerosis (MS) diagnosis early in life can present unique challenges. Many teachers and principals are still learning how to best help students with MS. Also, young adults may not know how to act with a classmate who faces problems they do not understand. For young people with MS, this can cause a strain on their social life.
To find out more about these challenges, we asked our MultipleSclerosis.net Facebook community members: “Did or do you have MS as a kid, teen, or young adult? What was or is school and social life like?”
More than 150 people responded. Here is some of what they shared.
Visits to the doctor are part of living with multiple sclerosis (MS). Whether you go routinely or once in a while, it is an ordeal. When you get to the office, you encounter challenges. We wondered what would make the visits better.
To learn more, we turned to community members on the MultipleSclerosis.net Facebook page. There, we asked you to answer this prompt: “Fill in the blank: If I could make the doctor’s office more MS-friendly, I would ____.”
Multiple sclerosis (MS) is a progressive disease. This means symptoms worsen as time goes on. Thinking about the future can cause anxiety. You worry about what happens in the future.
We recently provided space for sharing those concerns on the MultipleSclerosis.net Facebook page. There, we asked community members to tell us: “What’s your biggest fear about aging with MS?”
More than 600 responses revealed several common threads.
Multiple sclerosis (MS) impacts the body in many ways. Is difficult for those on the outside to understand. There are certain things only other MS warriors fully comprehend. Connecting with others living with MS feels affirming.
To learn more about these unique issues, we turned to the MultipleSclerosis.net Facebook page. We asked community members to complete this prompt: “Fill in the blank: _____ is something that only someone with MS would understand.”
One of you captured it well: “When we say, ‘I don’t feel good,’ this has an entirely different meaning.”
Life with multiple sclerosis (MS) requires lots of preparation and thought. There is much you need to successfully navigate each day.
We wondered what items, real or imaginary, help get you through a day. We asked community members on our Facebook page to tell us: “If you could create an everyday MS bag (think Mary Poppins pulling a lamp out of her purse kind of bag) that held everything you would need to be prepared for your day, what would be in it?”
You had some “practically perfect” responses!
Plenty of meds to help with flares and pain
Managing MS means keeping prescriptions and over-the-counter drugs with you. Flares and pain can arise at any time. You feel like a portable pharmacy.
“Pain killers.”
“Advil. Lots of Advil.”
“Medical marijuana.”
Tools to help you regulate your temperature
Temperature regulation can be challenging with MS. Many of you frequently overheat and sweat profusely. You would pull items to help you stay cool out of your magic carpetbag. While more of you need cooling items, some of you need items to keep you warm!
Often people in your life do not understand the nature of MS. It is wearying having to explain the disease over and over. Several of you wished for the ability never to explain this disease again.
“A huge stack of books explaining what MS is to hand people and tell them not ever to talk to me again unless they read the entire book.”
“Flyers of what MS is, so I don’t have to explain it anymore.”
Plenty of feel-good items
Comfort items were high on your list of things to pull out of your bag. These items help you feel supported navigating life with MS. Flares with MS are miserable. These items soothe both mind and body.
“Sweatpants, sweatshirt, my fuzzy socks, pillow, my softest blanket, Architectural Digest to look at pictures, a plant, my iPad, water, eye mask for sleeping, and my dogs.”
“Muscle relaxers, ice packs, pain meds, my teddy bear, phone and charger, and a good book if I can see. Oh, and some snacks!”
“Tennis shoes, Dr. Pepper, pain pills, room-temp water, sunglasses.”
“My iPad and a martini.”
A bit of magic
Many of you enjoyed using Mary Poppins’ magic in filling your MS bag! It is fun to dream big about what you could pull out of a bag when there are no rules. Your creativity and imagination are impressive!
“Fairy dust. For sprinkles of peace, joy, happiness, calm, and healing. And a couple million dollars.”
“The cool breeze of the NE ocean in summer and the dry weather of the SW in winter.”
“A toilet.”
“A never-ending paycheck, so I could stop working and tend to my health issues.”
“I would pull out a cure for all of us.”
We appreciate all the responses you provided to this prompt! From the serious to the silly, we enjoyed hearing what you would pull out of a magical MS bag. Thank you all for participating and being part of the community.
Paying close attention to what you eat is important if you live with multiple sclerosis (MS). Although there is no special “MS diet,” the foods you eat can make a big difference in your overall health. Your diet may also affect your energy level and your bowel and bladder function.1
To learn more about how people with MS are working to improve their diet, we reached out to our Facebook community. We asked members, “Have you altered your diet? What has your experience been like?”
Keep in mind, of course, that everyone is different. There is no guarantee if you follow a particular diet, you will feel a certain way. These are just the experiences of 40 of our Facebook followers. Be sure to consult your doctor before making any major nutrition changes!
Sugar is out and fiber is in
A low-fat, high-fiber diet is important when you have MS. You should try to limit the amount of sugar and processed food you eat. And getting enough fluids is also important.1,2
“I hardly eat fried foods anymore. I bake or air fry now and I limit pasta dishes and rice. I cut out sugary soda pops. Lost weight and feel lighter. I try to take probiotics also. Helps with digestion. I eat lots of homemade soups and salad. My body likes that.”
“Clean eating. No artificial or inflammatory foods/ingredients. No gluten/dairy. So far, so good.”
Staying at the right weight makes sense
People who live with MS should try to maintain a healthy weight, recommends the National Multiple Sclerosis Society. Obesity may increase the risk of other health conditions that can worsen a person’s MS.2
“I lost 10 pounds by eating less meat and more vegetables.”
“I know there’s a lot of negativity towards Keto but that’s what worked for me. I lost over 60 pounds in the course of 2 years (walking daily as well) and I had very low inflammation. I got off of it for about 2 years and am starting again because I felt so much better on it. I also did organic and grass-fed meats and eggs.”
Pass up the meat and try a nut butter
People with MS should focus on lean sources of protein and healthy fats. Experts recommend limiting intake of animal-based fats. This means cutting back on butter, whole milk, and meat, but it does not mean a ban on delicious foods.3
Try out some different kinds of fish. And include some nut-based fat sources like olive oil, avocado oil, and peanut or almond butter in your meal plan. They are a rich source of healthful omega-3s.3
“No salt, dairy, beef, processed food or processed sugars.”
“I have eliminated dairy and 90 percent gluten. Those made the biggest difference in how I felt overall. I have generally stayed away from processed foods. A family member ranches, so we get amazing meat through them, but we don’t eat a lot of meat anymore.”
Eat a rainbow of fruits and vegetables
Experts recommend that people with MS increase their intake of fruits and vegetables.2,3
“I am limiting processed foods and processed carbs and my focus is on 3 to 5 servings of fruit and vegetables each day, and 2 should preferably be dark leafy vegetables. I eat blackberries, blueberries, strawberries, pistachios, and broccoli daily.”
“Vibrant fruits and veggies – as much color as I can get on my plate!”
“I eat a lot more fresh fruit and vegetables and more food that has no preservatives, is not fried, and is low in sodium and sugar. While I’m not 100 percent with this, I DEFINITELY feel a difference with the way I eat.”
Thank you to everyone who shared information about their experiences with multiple sclerosis and making changes in the diet. We appreciate your honesty and willingness to share.
References:
1. Diet and Nutrition. National Multiple Sclerosis Society. Available at https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Diet-Nutrition?Accessed 8/2/2021. 2.Wellness for People with MS: What do we know about diet, exercise and mood and what do we still need to learn? National Multiple Sclerosis Society. Available at https://nmsscdn.azureedge.net/NationalMSSociety/media/MSNationalFiles/Brochures/WellnessMSSocietyforPeoplewMS.pdf. Accessed 8/2/2021. 3. Is there a multiple sclerosis diet? The Mayo Clinic. Available at https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/expert-answers/multiple-sclerosis-diet/faq-20057953. Accessed 8/2/2021.
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.”
Facing fatigue daily or almost daily is a lot for anyone to get through, and it’s frequently cited as the most frustrating symptom for people living with MS. It’s especially challenging when anyone with MS also has to keep a house clean, get food on the table, run errands or do the same work they did before receiving the diagnosis.
It does have a name. That maddening feeling of being stuck, unable to express what’s on your mind. In the Multiple Sclerosis community, it’s now called fumbling word vomit.
In her piece, Ashley Ringstaff details what many of you have experienced—that inability to find the right words in the moment. It’s yet another piece of MS that’s hard to live with.
We posted Ringstaff’s piece in the MultipleSclerosis.net Facebook page, and more than 100 of you commented, venting along with Ringstaff and sharing solution as well.
Paying close attention to what you eat is important if you live with multiple sclerosis (MS). Although there is no special “MS diet,” the foods you eat can make a big difference in your overall health. Your diet may also affect your energy level and your bowel and bladder function.1
