Reader Stories: Mornings With Multiple Sclerosis

If you don't hop out of bed full of energy, you are not alone...

Don't feel like this day
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Mornings for people with multiple sclerosis (MS) can be a special challenge. While many people over the age of 9 would not classify themselves as "morning people," those with MS often wake up with a cornucopia of MS symptoms that slow them down much more than the people who simply need a cup of coffee to jumpstart their day.

When you wake up in the morning, do a little inventory of how you feel. Start form the top and work your way down.

Hold your hands up to see if there is any noticeable tremor. Focus in on your feet and legs to determine if the paresthesia - numbness and tingling - has begun. During this time, you can also evaluate your level of grogginess or "fuzzy-headedness" to see how the morning is going to go. Of course, any weird twinges should be logged in, as well.

Perhaps mornings are okay for you. Maybe you start off with a mild headache and some MS fatigue already on board, but the rest of my MS symptoms wait a few hours before popping up. Of course morning is a time that's often full of stressors, such as lost shoes, arguing kids and running late for whatever reason, which accelerates the process. Morning stress might make you more likely to get tingly feet, a headache to the point of nausea or cognitive dysfunction problems that may cause you to look for something in the same place 10 times in 5 minutes, or forgetting what you are doing over and over again.

Maybe your mornings used to be full of energy and plans for the day. Now that you're no longer the morning person you once were, you might feel a little sad. Mornings might make you feel a bit more fragile or tentative, as you could be worrying about what might upset the delicate balance and wake up your symptoms.

Are morning easier than the rest of your day? Do you feel eager to jump out of bed an face the day? Or would you rather pull the covers up over your head? These experiences are different from person to person. Here are some quotes from patients just like you:

"Once out of bed it takes some time until my stiff leg muscles listen to me. Then I sort of stagger off to the bathroom. After a shower and breakfast I feel pretty good most of the time. But come noon my batteries are empty. Afternoon and evenings are for quiet things. I have gotten used to that rhythm and it's OK. The first half of the day is definitively my best part."

"My mornings are HORRIBLE. I am 32 weeks pregnant also and not sleeping well due to serious spasticity of both legs. By the time I get out of bed - I have NO balance dressed.and can’t bend my knees. I shower immediately and then I am totally too tired to even get  It is pathetic!"

"My dog gets me up to feed her breakfast about 5:30 am and I like it - she helps me to get going in the morning. I start the day with gentle stretching. Often, my morning depends on how well I slept the night before. Morning is my best time of the day."

"Mornings are always best for me. I consider myself a morning person, while my wife is definitely not, God bless her! I wake up and do an all systems check. Then I take my meds and head to the shower. After my shower, my pills have had a chance to kick in and I get dressed and walk our two dogs. At this point my wife wakes up groggily and takes a shower. When I get back from walking the dogs sometimes I am already tired, other times that walk and fresh air is just what I needed to kickstart my morning. Then we are off to work. My energy kinda wears off in the afternoon, but after I see my wife after work I feel better and can enjoy my evening relaxing with her and our kids. I pray that tomorrow I will feel as good as I did today!"

"Mornings - I think for me it is the best part of the day (which doesn’t mean much). I wake up and start my coffee, take my pills and wait for the tingling to subside, which is taking longer and longer. My energy level is stronger in the morning. By mid-afternoon I am falling asleep sitting up even with my medicine. I will not let these things stop me from living, though."

"It’s so comforting to hear that others that feel the way I do. Sometimes I wonder if my symptoms of fatigue and fog are in my mind and I need to push harder to come out of it, until I try to get cleaned up and dressed then I become so weak that I can’t stand up. I know the less I move the more muscles I lose."

"Two days ago I felt fine when I woke up. I had my usual 2 cups of coffee and then started to get the 'my head is too heavy to hold up' feeling. I ate breakfast, thinking that might help a bit, but it didn’t. I just sat down on the couch and fell over. Maybe more sleep is what I needed. Sometimes I even go into the bathroom and lay on the ceramic tile just to place my face on the cold floor. I stay there for a few minutes and then I feel more energized. It might sound odd, but it works."

"I have experienced a hard time sleeping in the middle of the night, so I lay in bed after my husband leaves in the morning and get a couple of hours of sleep. It takes me awhile to get going because my back often hurts. My balance is not good and it is at its worst when I get up. After about 30 minutes, my walking improves, although I still use a walker."

"I have had to get up early for three days in a row and find that I seem to function better when I rise early. I may try that for a few days. I am retired so there is usually nowhere I have to go early. The other things I do each morning is test my ability to drive. I have lost function in my right leg, so before I back out of the garage I check to see if I can effectively move my foot from the gas pedal to the brake and back. Losing the ability to drive is one of my greatest fears."

"Is it normal to wake up almost every morning with a headache?"

"If I’m going to have what I call a ‘school bus day’ (which is when I feel as though a school bus has driven over me and the amount of energy it would take to even scratch my head is prohibitive), I will know as soon as I wake up. In these cases I don’t actually wake up in the true sense of the word. Thankfully, these days are only monthly usually unless I’m under a lot of stress, there are significant changes in the weather in a short time, or I have an infection of some sort in my body that makes my MS flare up. Normally, I’m not a morning person, but I do think that cognitively I am better off in the mornings. If I am able to push myself out of bed to get on with the day, and not stay there, depressed and dejected, mornings are fine. However, it is a constant struggle however."

"I have struggled with fibromyalgia, chronic fatigue syndrome and chronic Epstein Barr Virus for years. Then last Fall I was diagnosed with MS. Last year I was experiencing horrible fatigue where I was unable to move. I started taking Ribose and it worked miracles. After 3 days of taking it, my fatigue improved tremendously. I no longer collapse from exhaustion on a daily basis. I still get sluggish but I very rarely have such fatigue that I can’t move. I highly recommend the Vitamin Shoppe’s Ribose because it does not contain sugar. Anyone experiencing severe fatigue should try it."

"I can usually tell first thing in the morning how my day will go. If I wake up with a 'fuzzy brain' I know it will be a long day. On good days, my 'fuzzy brain' comes early afternoon. I have found meditation CDs to be really helpful with fatigue. It seems to give my body a little break so that I can get through the rest of the day."

"I used to be a morning person and I miss that! Now I am sleepy and tired and fuzzy-headed. Sometimes it lasts until noon. Sometimes I have to take an extra nap. It often seems like I ‘rest’ about 3/4 of the day and then find some energy at the end of the day!"

"I’ve never been much of a morning person. My MS has made my mornings much worse than they were. Having worked for the federal government for 27 years, I was used to getting up at 5 o’clock in the morning to go to work now going to bed still roughly the same time I wake up about 7 am. I take my injection in the morning and drift back off to sleep until about 9 o’clock, then I get up either eat a breakfast or drink an Ensure-type beverage. I get a few good hours where I’m really fine until after lunch. By the time I finish lunch my vision is starting to go and my fatigue is growing fast and I just really don’t feel like doing anything. I will rest until dinner time then after dinner I will be good for another couple hours of light activities. I used to be able to go all day long, get up at five go to work get home, ride my bicycle, do all the fun things that everybody else does, but unfortunately MS has taken the joy of most of those activities away from me. But at least I woke up today - a lot of people didn’t get the chance."

"Mornings are met with getting out of bed and loosening up my leg muscles on my way downstairs to get my cup of tea. After about 10 minutes I’m ready to start my day. Mornings are my best, as far as energy. My job has me walking most of the day and I’ve learned to pace myself, which makes tasks so much easier. Evenings are for rest and recharging. I rarely do anything at night during the work week. I’m learning to listen to my body and when it tells me it needs rest."

"The morning is when I feel best. Somedays I look in the mirror when I get up feeling tired and achey, and tell myself this is a good as your going to feel today. But every day I fight on. Going to the gym in the morning has help greatly physically AND mentally. 25 years of fighting MS now and I am definitely taking my lumps lately. I may be going down, but I'm going down swinging."

"Most mornings are ok – there is an occasional morning that I will wake up unable to walk because of balance issues. But there are many days I cannot make it even through the day with two Provigil. I try to fight my body and not give in. Sometimes I have no choice but to just let the bed take me over and I will sleep for 10 or 12 hours, or take more than one 2-hour nap during the day."

"Used to love sex in the morning, now sex at all would be nice. Working with a trainer at the gym 2 hours a day 3 days a week seem to have a huge improvement over my daily elliptical at home. Stretching a lot and doing exercises to strengthen my legs really helps. Hope my balance improves."

"I usually do pretty good in the morning and can keep the momentum through the afternoon. In the evening, stick a fork in me, I’m done! I drag home and collapse in my recliner in front of the TV. Then the fatigue catches up with me and I can tell I pushed too hard to keep going. Of course, next the restless leg syndrome kicks in and I can’t even sit still and rest without moving my legs. Last Sunday was totally different. I was extremely tired all day. Don’t know why. Just another day in paradise with MS.

"What I can’t figure out is do I give into MS fatigue or fight it? When my daughter was small, I fought it, but the whole time I was awake I felt horrible. Now I get her off to school and sleep until 11:00 (yet still waking up with my negative thinking all the same!). I see my nervous system as a 'detour' zone with all those orange signs and black arrows! My M.S. makes my nerves do so much extra work to get from point A to point B, no wonder I’m so tired!"

"If I get a good night of sleep, I'm usually better. If it was a bad night of sleep then forget it. it will take me up to 3 hours to get motivated. I take my Amantadine every morning. I think its helping, but who knows? I still feel like crap."

"Early morning hours are the best for me. Even though I wake up still tired, it’s the only time of the day that I can anything done. Normally, within a 'few' short hours I’m done for the rest of the day. I never get a full nights rest and once awake seldom go back to sleep. My legs and back ache due to stretching so just getting up is hard enough. I don’t nap but I do lay down to read and watch TV. Most day are 'good,' but I am still learning moderation is the key and always try to save a little energy for the unexpected."

"My mornings are slow to start, 7:30 coffee and meds and if I can afford Provigil, within an hour I’m moving. A warm shower stretching while in the heat seems to help, and and if it’s a good day I’ll accomplish a couple of things before I need to rest and recoup, by afternoon I’m down. After resting a couple of hours (not always sleeping, my muscles just need to lay down) another dose of caffeine and pain med’s and I usually have another hour or so of productivity. Pacing myself is key, slow and steady wins the race."

"Recently mornings have become my nightmare. I hate mornings. I have found that my feet muscles become very stiff over the night. When I get out of bed and place my feet on the floor to stand the pain is teeth clenching. They are so sore. I walk around to get to places like the bathroom, open the blinds and go and put the kettle on. I feel like my feet have no muscles and are walking on concrete."

"I then get a headache from the dizziness to the point that I am feeling sick. Most of my mornings are using most of my energy and my plans for the day seem to fade. I take my medication with coffee. This is the only time of the day that I drink coffee. I then look out my window to check the weather, wondering whether it’s good day to venture outdoors. Then I sit on the couch to eat breakfast and the thought of going outdoors has faded away. Then I am ready for another sleep by 11am."

"It is so amazing to hear all the people who have experienced what I am feeling. I usually get told that I just don’t exercise enough or need to lose weight and my neurologist keeps pushing sleep apnea for the explanation for my severe fatigue. Mornings are my best time – usually Monday and maybe Tuesday. The rest of the day is downhill and by night I am useless. The rest of the week is a disaster – constant headaches, nausea to the point of throwing up and I just feel like I can’t keep my eyes open. Provigil did nothing. The office I work in wants to keep the temperature at at least 72 degrees and I have severe heat intolerance. I am so frustrated because no one seems to get it and I just have so few good days anymore. I am useless in the summer."

"Mornings for me are the best. I do wake with the usual slight headache, sometime moderate headache but overall mornings are my favorite. I can usually tell if it’s going to be a decent day after getting out of bed with less or no balance issues first thing. My balance is my first sign and then the extreme fatigue. I have tried pacing myself so that the afternoons are not so bad but I end up just getting less accomplished because after a 4- or 5-hour day I am DONE."

"Don’t want to depress you guys, but my mornings are like a waking nightmare. After a disturbing night's sleep, I wake up to a hungover feeling, which takes hours to lift. Only after watching TV through my good vision eye for awhile and drinking several cups of coffee, I  stagger up and stretch, still only at 70 percent. I need a power nap in the afternoon, then feel loads better. I miss the energy filled mornings."

"I love mornings because I at least wake up, but getting out of bed begins my 'rock climbing.' I think it's one of the most difficult parts of my day. I used to run and be full of energy, but now getting up is like an exam that I was ready for but still struggled on."

"Mornings are usually my best time once I get up and get my bearings, I deal with vertigo also. The walls are my friend in the morning because I, like many of you, deal with muscle issues and balance/gait issues and 'the fog' feeling. For the most part, if I can get out of that 'fog,' my mornings are good. Headaches in the morning for me a very common; many times it’s just a nagging headache, if I can get it to go away the day is pretty good. I hate to say it, but it is really like a terrible hangover that can take sometimes take hours to get out of, and I haven’t drank in over 20 years! We bought a new Serta adjustable bed with a massage feature - it has helped some, but sleep has always been an issue. Many times when I finally get to sleep it is time to get up. I take Provigil twice a day but still about 1-2 pm my energy level is pretty zapped out in the afternoon. It is such a help to see and understand that other MSers go through similar situations. One recent change in the morning that I have experienced is my hands are almost locked in position from the night and takes sometime to get them to loosen up."

The Bottom Line

It seems like most of us have some problems getting going in the morning, and once we do, we often have pretty limited energy in the early day. It is important to observe your energy levels, so that you can when possible plan accordingly, when possible.

If you are in control of your schedule and workload, do the things that require the most energy and brain power during your high-functioning times and do the more mundane things when your brain is on autopilot. Even if you don't have this degree of control, try to be gentle with yourselves during the times of lowest energy.

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