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.”
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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.
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.
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.”
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.”
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.”
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.”
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.”
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.”
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.
And yet, you all keep going. We asked the Facebook community at MultipleSclerosis.net which household chores are Continue reading
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.
Here’s what you had to say. Continue reading
Uncontrollable. Insatiable. Seemingly brought on for no reason.
The scratching that can accompany an MS diagnosis is one of the most frustrating symptoms to deal with. It’s a neuropathic itch — that is, caused by messed up nerves signals from the brain, which makes the itching sensation impossible to stop. No amount of scratching lessens its intensity.
To learn more about how you cope with this symptom, we reached out on the MultipleSclerosis.net Facebook page, asking, “Have you ever had that uncontrollable itch that feels like bugs crawling all over you?”
More than 300 of you reacted, and more than 70 of you weighed in. Here’s what you had to say.
Because the itching is a signal switched on by the brain, there’s little you can do physically to change what’s happening. But the desire to act is relentless. Several of you mentioned that you can’t help but continue scratching, even when it leads to bleeding or bruises.
“OMG yes, and it’s insane! Sometimes I am positive that a spider is crawling on me and there isn’t. I have bruised myself by scratching.”
“Always, it’s horrible. It won’t stop being itchy till I scratch the hell out of it, then I end up with sores and scratch marks.”
For many of you, the itching came on long before you even knew you had MS. For others of you, you didn’t know that the itching was related to MS until you read the Facebook post on MultipleSclerosis.net. Until you have the MS diagnosis and the understanding that this itching is related to the diagnosis, it can seem mysterious — which is more frustrating than anything else. Too often, we can’t even begin to treat that which we can’t categorize and name.
“Yes, three years before I actually had the initial onset of my disease. It was absolutely horrible. Now I get itching on the palms of my hands and fingers. It’s really annoying more than anything.”
“Yes, but I didn’t realize it had anything to do with my MS!”
Although the onset of symptoms can appear random, it can be triggered by stress. For many people, stress worsens after the workday, as that is when the mind no longer has tasks to focus on, and instead, can start spinning with worry. Thus, bedtime can be one of the most challenging times of day as we lie in bed with nothing but our thoughts.
“OMG, I have been having this the past couple days. Feel like my skin is crawling. More so in the evening.”
“Yes, and it’s like fire ants! Just as you are going to sleep is when it hits hard.”
“Yes, very frequently especially at night along with a feeling of electric shock on nerves on my right side.”
Several anti-epileptic drugs, including Neurontin, aka Gabapentin, and Lacosamide, aka Vimpat, were developed to treat seizures caused by shingles, but have also been found to provide relief to the nerve-related problem of the MS itching. Several of you named these drugs, citing that they alleviate much of the itching. If this sounds like a solution that might work for you, start with your regular doctor or ask about seeing a neurologist.
“Honestly, this is the only symptom that seems to be better when I’m taking my Neurontin… The random creepy-crawling feeling and the pins-and-needles feeling, which is nice. I used to feel like something was crawling across my face and biting me.”
“Your MS specialist should be able to help you. If it’s something that is out of control, a drug such as Gabapentin can help. Some topical routes can help soothe but because it’s neurological, just know this is coming from the brain. Cool clothing and lowering your stress can help. If needed, talk to your neurologist.”
“I take Vimpat, a seizure med, to control it—because otherwise, I will scratch till I bleed and bruise.”
For others, a simpler solution may work. Anti-itch creams are easier to get and might be a good choice for a first step in solving the problem. Beyond creams, there are alternative therapies available as well.
“This happens all the time. I used to take pills to stop the itching, but Medicare quit covering them. So now my doctor gives me a prescription itch cream and it helps!”
“I go for light treatment. It works!”
We want to say thank you to everyone who shared their stories and solutions on the MultipleSclerosis.net Facebook page. Check out the comic that inspired these responses here.
The invisible disease. The silent struggle. Unlike other diseases, Multiple Sclerosis can largely present only internally, mainly as pain and fatigue. This, in turn, creates an entirely new kind of pain—the pain of being alone in suffering. When others don’t know what is wrong, or can’t fully understand what it is like to live with MS day in and day out, most living with the diagnosis often forgo speaking up, and instead, learn to cope quietly.
But you don’t need to be quiet here. Continue reading
Living with MS comes with many challenges, both physically and emotionally. These life changes and demands can often lead to irritability, which happens to be one of the most common experiences that can come along with MS. Mood swings and irritability can be brought on by the physical pain and the overall toll MS is taking on the body. The stress and emotional adjustment of living with MS, as well as the treatments and medications prescribed, can all add to this exasperated and agitated state.
We recently published an article from one of our contributors, Calie Wyatt, who compared herself to the character of the Abominable Snowman from the classic movie Rudolf (the red-nosed reindeer). The character was continuously enraged and ill-tempered to those around him, but little did the others know, he was actually suffering from a horrible tooth ache, which led him to being so irritable. It was an interesting analogy to how Calie’s MS pain and fatigue would cause her to lash out at her family and friends. We received such incredible feedback from our community members about this article that we thought we would share some of their responses with you.
Sometimes irritability and belligerence are a direct reflection of the physical impairment and pain of MS on the body.
“Sometimes I feel the crankiness stems from trying to push past the pain, and live up to the expectations of others.”
“I’m not even aware of my physical misery until I become horrid and crabby…”
“It’s so frustrating having pain all the time. I have been having problems controlling my emotions.”
No matter what you’re dealing with, we all can get ill-tempered and irritable when we are tired or uncomfortable. However, this experience can be made worse when dealing with a chronic condition like MS.
“I get extra crabby when I am tired, and I am tired ALL the time.”
“I used to be a morning person, now it takes so much energy to get going and stay going. I try not to be grumpy, but I can’t help it.”
“I don’t have the energy for life.”
“As far as the exhaustion and fatigue are concerned, I’ve noticed its worse on days when my pain level is high because I feel my mind and body are constantly trying to cope with it and tolerate the pain.”
“I pay close attention to how tired I allow myself to become…I have total meltdowns if I push myself too far. The MIND AND THE BODY JUST SHUT DOWN. When I say I AM TIRED this means I’m DONE… I go lay down – sometimes just a short break and sometimes for the rest of the day if that’s what my body and mind needs.”
“I can relate, I am tired and irritable and can be short and snappy with people.”
Living life with a chronic condition may lead an individual to stay at home more than ever before. This, along with anxiety and depression can contribute to irritability.
“Understanding that the source of our emotions may be depression can help us show ourselves grace.”
“I think my isolation makes it even worse when I do go out, and anxiety jumps into the mix.”
“While I usually never get grumpy, I do get very distant and quiet when I have a lot of pain.”
“This condition has made me a hermit!”
The day-to-day struggles and stress of living with MS can easily lead to moodiness and irritability that can provoke entire personality changes.
“This condition can flat out change your personality in ways that are directly opposite of who you are. I’ll make a rude comment and later wonder: what the heck is my problem?”
“I lashed out at a stranger at the market just a few days ago. I’m not normally like that.”
“I’ve been embarrassed about my behavior but finally forgave myself when I accepted that I did the best that I could at the time.”
“I’m so emotional, I can’t keep my thoughts at bay…they spew out of me so often that I annoy myself. I’m so tired! “
“I’m not the same person, I’m nasty I think. I snap a lot.”
Irritability can strike anyone at any time, and pain, fatigue and depression can all be contributing factors. However, for those living with a chronic condition like MS, irritability can come from all of these factors and so much more. When possible, try to identify what may have triggered your irritable state. If you’re able, pay attention to those things or situations that can lead you to being tense and uneasy, so you, and your friends, family, or healthcare team can try to help resolve them. If you experience any MS-related irritability, let us know how you navigate through, or if there’s anything we’ve missed!