Navigating pain is a consistent challenge with multiple sclerosis (MS). Nights are often not restful. Many with MS wake in pain. It is challenging to move first thing in the morning.
MultipleSclerosis.net members recently engaged in a discussion about morning pain. Here are some of the insights they shared.
Living with multiple sclerosis (MS) can feel lonely. It is hard for others to understand the spectrum of MS symptoms. Fortunately, there are communities to connect with others navigating MS! It makes the journey feel less isolating.
MultipleSclerosis.net recently posted the following:
“Fill in the blank: ______ is something that only someone with multiple sclerosis would understand.”
This question clearly resonated, as there were over 350 responses! Among the comments, some common themes emerged.
A concern for many people with multiple sclerosis (MS) is the fear of falling. Loss of balance with this disease makes falling a common problem. But many find that slowing down, walking carefully, and learning to get up safely after a fall can be helpful.1
MulipleSclerosis.net recently published an article that highlighted some of these trials. Given the reaction it received, it clearly resonated with lots of people! Here are some of the themes that people shared in response to the article.
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.
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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.
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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 ____.”
You had some inspired ideas for changes.
Continue readingMultiple 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.”
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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!
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.
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.
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.
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!
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!
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.”
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.”
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.”
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.
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.