In the early days after diagnosis, MS triggers are often a mystery. However, many find that the more time they have lived with MS, the more they know exactly what makes their symptoms worse.
People with MS tend to be very familiar with the typical symptoms associated with having this condition, like pain, fatigue, difficulties with mobility, numbness, tingling, bowel and bladder problems, among others. However, there’s so much more to having MS than what anyone could find in a textbook or a pamphlet at the doctor’s office. We wanted to know more about the everyday life of those with MS, so we asked our Facebook community to respond to the statement, “You know you have MS when____.” More than 150 people replied! Below is a summary of the feedback we received.
You just feel exhausted
- After sleeping a full 8 hours, you still feel like someone used your body to run a marathon
- The simple task of washing your hair is exhausting
- Your kids think that all you do is sleep and that you’re sick all the time
- You are so tired that you cry, and no amount of sleep helps
- Everyone says, “You look tired – what did you do last night?” and you respond, “Nothing”
- You’re too tired to get up, but you just end up lying around in bed thinking about what you should be doing
- You wake up with a little bit of energy, bounce upstairs and fix breakfast, only to end up exhausted and needing a rest
- You are tired or fatigued all the time, and you can’t find the energy to take a shower
- Your battery depletes after 45 minutes of walking, and you become a complete physical mess on your feet
- Feeling well-rested is a thing of the past
- You must have a plan B, C, D, etc.
- You need a nap before you go to the store to get coffee, and then need a nap again before you put it away
- It takes HOURS to pay bills and organize your family calendar when, in the past, you were a successful nurse manager and an expert at multitasking
The weatherman is not your friend
- Summer used to be your favorite time of year, but now sunlight, heat, and humidity keep you inside like a vampire
- You’re the only one in the room saying, ‘Is it hot in here?’
- When 70 degrees feels like you’re standing inside of an oven
- When you can’t do any outdoor activities due to the heat
- When summer heat hits the triple digits, and you can barely breathe
- Your body is better at predicting the weather than the actual weather man
Getting around and maintaining control of your body is challenging
- You can’t play with your kids or take a walk with your husband
- You fall over when standing still
- Your upper body starts to walk, and your legs don’t get the memo in time
- You don’t even realize it when your legs go out from under you
- You wonder if you’ll be able to climb the four stairs it takes to get into your office at work
- You just tip over when standing still on level ground
- When you wake up one morning, and you’re paralyzed on one side of your whole body
- You keep tripping up over nothing
- You are always dropping things
- You are in the market shopping for groceries, and a fireman stops you because your face is drooping and you are confused, and they think you have had a stroke
- Your hands are asleep and they don’t wake up
- You are eating dinner and your arm suddenly jerks and your food goes flying across the table
- You walk like you’ve had a few cocktails, but you haven’t had a sip
- You find that no one around you realizes how hard you have to work to keep up, and you just end up getting left behind
- You have to stop mid sentence because you’ve lost your train of thought
- You take the dog for a walk around the block,and your legs feel like they are encased in cement
- You walk like you are dancing to Michael Jackson’s “Thriller”
- When your knees are locked as though there’s a magnet holding them together
- When you go from 0 to pee in two seconds flat
- You have to hold on to walls because you lack balance
- You trip over something earlier in the day because of ‘drop foot’ and later that day you look at your scraped toes and wonder what happened
- You decide being an unwitting participant in a wet t-shirt contest is better than running for cover during a surprise rain storm at an amusement park
- You can’t stand without assistance
- Your head goes one way and your legs another
- You have to look at your hand and tell it to move
- When you can’t pass a field sobriety test while sober
- Despite only being 41, you walk like your 76 year-old mother
- You have to lean your elbows against the shower wall to wash your hair
Your mind isn’t as sharp as it used to be
- You lose your train of thought while mid-sentence
- You walk into a room and forgot why you went in there in the first place
- You have the hardest time trying to say what you want to say, and your words come out making no sense
- You describe your symptoms, and your neurologist looks at you as if you were speaking Greek
- You get confused when there is too much going on around you; you can’t even place an order at a fast food restaurant
- What was the question?
Pain and numbness become a part of everyday life
- Your feet feel like they are on fire or you have frostbite
- You are numb and tingly and have burning sensations all over
- You get unexpected zaps of excruciating pain in your face, arm, leg, and you try not to scream
- You are screaming from pain as what feels like loose electric wires whip out of control at the base of your spine
- You feel like you are being stabbed, and you have a tingling feeling all over your body
- You can’t feel your fingers, but you feel like you’re walking on rocks, barefoot
- You feel continual electric shocks down one whole side of your body that are strong enough to make you gasp out loud
- You “feel” noises that go straight to the bone with subsequent weird pain!
- Your body feels like you got into a fight with Mike Tyson, then got run over by a semi, and then kicked to the side of the road
- You feel like you are sitting in a wet bathing suit because your butt is numb
People assume that you are fine
- When everyone assumes you are normal and they say, ‘Let’s go – get with it’
- Your friends and family think you are fine because you look the same, so they think you are just being anti-social
- You get angry hearing, “Gee, you can’t be feeling bad … you look too good”
Does any of this resonate with you? How would you complete the statement, “You know you have MS when ____”?
By: Jeri Burtchell
Living with the challenges of MS is one thing, but if you also live in the south, surviving summertime is no small feat. Everyone’s symptoms are different, but here’s a universal MS fact: whatever the symptoms, heat will make them worse.
Having lived in northeast Florida since my 32 year-old was in diapers, I consider myself a southerner, even though technically I was born in New York.
I qualify as a southerner because:
- I don’t own a pair of boots, but I have more flip-flops than Skittles has flavors.
- I wait until the weatherman says a hurricane is at least a category four, and three blocks away before I get supplies.
- My perfume in the summertime is mosquito repellant.
- The only candles I buy contain citronella.
- I take beach photos from the passenger seat of a moving car as we’re doing a drive-by – to prove I really do live in the Sunshine State.
I head indoors before the summer solstice in June, set my air conditioner to “frostbite.” I don’t emerge in the light of day again until school starts in the fall. It’s the only way I know to endure it.
When I was in my 20’s, my favorite hobby was hiking in the Ocala National Forest armed with binoculars and a bird book. I don’t recall the heat ever bothering me.That was before MS and old age turned summertime into my mortal enemy. Now I admire the outdoors on the Nature Channel or ESPN, no longer eager to be personally immersed in it.
But sometimes you just have to brave the elements. Like when your granddaughter joins a local swim team and you go to cheer her on. Turns out you can’t do that via Skype, at least not when you’re the one who’s going to be driving her to and fro.
Her first meet was an hour’s drive out of town. We had to arrive at 7 a.m., and we figured it would last a couple of hours and we’d be out of there in no time–before the coolness of the morning was replaced by scorching heat.
Boy, was I wrong! I have lived here long enough – I should have known better. On top of that, I even wrote an article about how heat affects those with MS. It’s not like I didn’t know.
But what we thought would take only a couple of hours turned into an all day event. By the time she was done and we were headed home, I was dizzy and limp as a noodle. We had to sit in the car with the AC running full blast for quite a while before I could even drive. While we sat and waited for my brain and spinal cord to cool off, we chatted about how much fun she had.
It was at that instant I knew that any heat-related suffering I’d been through that day was worth having shared the experience with her. As I began to cool off, and my legs changed from overcooked pasta to more of an al dente, I realized I was going to have to come up with a plan.
MS might stop me from my bird-watching nature hikes, but when it tries to come between me and cheering my granddaughter on, I’m putting my numb and tingly foot down.
So I made a list of what might make the experience more bearable for me next time:
- I’m wearing shorts or a dress. Period. No matter how unflattering my legs might be, jeans are not an option.
- I’m wearing light, thin clothing and only flip-flops on my feet.
- I’m bringing a folding chair — despite all the chairs at the facility, there was never one available when I needed to sit down NOW.
- I’m getting a big floppy straw hat.
- I’m bringing a personal cooler with a rag down in the ice water that I can wipe my brow or pulse points with occasionally.
- I’m bringing lots of bottled water.
- I’ll get myself a spray bottle with a fan built on it.
It never occurred to me to sit at the edge of the kiddy pool and stick my feet in, but I just might do that, too. Of course, by the time I have a huge floppy hat, breezy muumuu covered in Hawaiian flowers, and oversized sunglasses on, my granddaughter might just be mortified at me shouting encouragements from the side of the pool.
But it’s either that or stay home, and since they don’t televise her swim meets on ESPN, I don’t have a choice now, do I? 🙂
*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.
The summer months are upon us, which means warmer temperatures and the potential for a worsening in MS symptoms. Fatigue is one of the more common symptoms of MS, and it can impact a person’s mood, sleep, and overall quality of life.1 As many of us know, there is a well-established link between MS-related fatigue and heat sensitivity,2 so the warmer summer months can be especially challenging for a person with MS.
Last summer, one of the MultipleSclerosis.net contributors, Ashley Ringstaff, wrote about some of her trips and tricks for dealing with the summer heat. Since Ashley lives in central Texas, she is no stranger to brutally hot summers. She also has 2 very energetic children who love being outside, so staying in an air-conditioned house all day isn’t an option, even if she wanted it to be. Ashley’s recommends using cooling products (not just cooling vests), including those that are available through MSAA’s Cooling Program and Polar Products. She also uses an outdoor garden hose mister and outdoor fans when she is sitting on her porch, and she even likes the inexpensive handheld fans when she is following her boys around. She noted that staying hydrated, is of course, also extremely important.
Caregivers also understand the importance of helping a person with MS stay cool to minimize heat-related symptoms. Last summer, Patrick Leer shared his story about making lifestyle adjustments to help his wife during the warm summer months. He made sure to keep a cooler packed with water bottles and a neck cooler that he received at an MS walk. Patrick also mentioned unique considerations for planning a family vacation at the beach – he would book a room with a view of the beach so his wife could stay inside with air-conditioning and enjoy watching their daughter play outside in the sand. They even managed to find a beach hotel with an ice rink, which seemed to be made for families just like theirs!
Because heat can exacerbate MS-related fatigue, we recently asked our Facebook community if they experience more fatigue in warmer months, and how they manage MS-related fatigue. Here are some of the highlights from our community members’ responses:
Managing MS-Related Fatigue in the Warmer Months
Keeping cool using different devices
- Soak small towels in water for your neck, face and top of your head and reload it at water fountains or hoses.
- Use a cooling vest.
- Carry ice packs in your pockets with a travel sized spray bottle full of cold water.
- Carry a small damp towel in the spring and summer to help cool your head and face.
- Use Frog Togg cooling cloths.
- Wet bands that you put around your neck really help; also drink plenty of water, use air conditioners and fans.
- Take cool showers.
- Some individuals may benefit by wearing long sleeves and a hat when outside. Sweating is nature’s way of keeping you cool, so long sleeves can absorb perspiration and keep you cooler. Limiting time outside to 15- or 20-minute periods with rest in between can also help.
Consuming cold food/beverages
- Eating crushed ice throughout the day can help.
- Keeping a cold drink with you helps tremendously so you can cool yourself from the inside out. Iced beverages and popsicles help.
Other tools to combat heat-related fatigue
- Exercise helps but it is sometimes difficult to shake the symptoms to get up the energy to go exercise.
- Acupuncture and reflexology can help.
- Try to get as much done in the morning to mid afternoon.
- If prescribed by your doctor, taking a medication such as Provigil® (modafinil) that promotes wakefulness can help.
MultipleSclerosis.net moderator, Christie Germans, mentioned that she relies heavily on air conditioning as well, and she’s able to get a discount on her electricity bill due to her MS diagnosis. She recommends exploring your gas/electricity provider’s website for discounts available for medical needs. Multiple sclerosis will likely be listed in the “qualifying medical needs” list. Or, contact your neurologist’s office. You may be able to save as much as 30% on your bill! For her full response, click here.
Do you experience more symptoms in the warmer months? How do you manage MS-related fatigue?
1. Induruwa I, Constantinescu CS, Gran B. Fatigue in multiple sclerosis – a brief review. J Neurol Sci. 2012;323:9-15.
2. Marino FE. Heat reactions in multiple sclerosis: An overlooked paradigm in the study of comparative fatigue. Int. J Hyperthermia. 2009;25:34-40.
By: Matt Cavallo
In terms of the heat, spring is quickly turning to summer in Arizona. Daily temperatures are already constantly in the nineties, creeping closer to triple digits every day. As a person living with multiple sclerosis, this is a problem. As the heat levels increase, so does my fatigue. Each day for me is becoming a battle of will and determination to accomplish simple, everyday tasks. My refuge from the heat is to hibernate in my cool, air-conditioned house.
Recently, I was at work and received a call from my wife that I wasn’t expecting. She told me that the central air-conditioner in the house went out. She went on to say that the AC repairman said the motor was dead and the entire unit needed to be replaced. The sticker shock of what a new AC unit costs was another blow, but with my MS, there was also no way I could afford not to replace the AC.
As I hung up the phone, I started to feel defeated and stressed. It always seems that just when I am starting to get ahead, I figure out a way to fall behind. As I reflected on the situation, I realized that it was out of my control. So what was I to do now? There are all kind of events in life that we don’t plan for, and this was a big one. I could let the worry, stress and financial considerations of the situation bring me down into a negative place, or I could look deep inside myself and somehow find the positive.
I decided that I was going to be positive. The AC was twenty years old, too small for the house and a real drain on our energy bill. We had talked about replacing it for years and this situation was forcing our hand. When I put it in my mind that getting a new AC was good for us, the negative circumstances started to change. We had a friend that could install the AC for a reasonable price. The vendor didn’t have the AC unit in stock that we purchased, so for the same price they gave us a bigger, more energy efficient unit. That unit then qualified for a $500 tax credit. The best moment, however, was the joy my four year old received as we watched the crane remove the old unit and then put the new unit on the roof. He was so excited to see the construction that it made me excited to share in that moment with him.
When life throws unexpected challenges at you, how do you handle them? You can choose to be negative or positive. I choose to make lemonade out of lemons and then pour myself a nice big glass.
*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/
Though spring has just begun for many around the country, some individuals may already
be thinking about the upcoming summer months and what that means – heat! For individuals with MS who experience heat sensitivity with their MS symptoms, the idea of facing the heat and humidity the summer season brings can be stressful. But it’s important to know there are some ways you can cool your body down and feel some relief with those hot and humid days. MSAA offers a Cooling Equipment Distribution Program which provides different ice-pack style cooling vests and accessory options that can be worn on the body for relief from the heat. With differing vest styles ranging from those that can be worn under or over your clothing, and kit accessories that include cooling wrist and ankle wraps, the program has something to fit individual needs. For more information, see the MSAA website at https://mymsaa.org/msaa-help/cooling/.
*Please note the program eligibility requirements within the application.
Although the summer season has not officially come to an end, it’s that time of year again that reminds us to try to soak up what’s left of the summer sun. Though it may feel like the height of the summer season is passing, the heat may linger and stay well into September/early October as it has in the past. When this occurs we get to recapture the remnants of summer joys. If you like this season be sure to get out and embrace what’s left, because when you start seeing school supplies and Halloween decorations displayed while browsing in stores you know fall is just around the corner. Although for some the end to summer is a sad occasion, for others, especially those affected by the heat, it is a time well appreciated. So while it is not quite yet the official end of summer, time reminds us that seasons change, so enjoy what this season brings!
For many individuals with MS, the summer can be a difficult time. The heat and humidity may cause MS symptoms to flare and become agitated because of heat affecting one’s body temperature. For some who experience a worsening of symptoms in warm environments, this may actually be an example of a pseudoexacerbation. A pseudoexacerbation is a temporary worsening of MS symptoms, without the presence of actual myelin damage or inflammation. Other than heat, individuals may experience this as a result of other illnesses or infection. It is important to take note and be aware of what symptoms you are experiencing, how long they occur, and your environment surroundings. If you find yourself heat-sensitive, try to avoid warmer settings. Stay in air conditioned places, do outdoor activities either early in the day or after sunset when the temperature is cooler, and wear lighter weight clothing when needed. If you have concerns about or are experiencing new symptoms it is important to be aware of your activity and surroundings, especially during these warm summer months!
For more information on pseudoexacerbation, see the MSAA brochure, Understanding and Treating MS Relapses, https://mymsaa.org/publications/understanding-treating-relapses.