Fatigue & MS: It’s Different

Fatigue & MS: It’s Different

People living with MS understand the following statements all too well:

“If you just try harder.”

“You’re just depressed- once you get that under control you’ll feel better.”

“If you lose some weight that would help.”

“If you gain some weight, that might help.”

“Of course you are – I have days like that, too – but I push through and you can, too.”

Reader FavoriteThese are just a few examples of usually well-meaning people encouraging us to cure our own MS fatigue and get back to the activities of daily life. If only it were that simple. About 80% of people with Multiple Sclerosis list fatigue as one of their worst symptoms, yet it seems to be among the least understood. Because we ‘look so good,’ it is difficult for others to comprehend the continuous assault going on inside our central nervous system. Fatigue can’t be measured or touched and it takes a good deal of energy to explain it to those who don’t have MS.

Many people with MS refer those who don’t understand our particular fatigue to the Spoon Theory, written about living with a chronic disease, by Christine Miserandino.

The spoon theory proposes that we begin the day with so many spoons and once we use them up, they are gone for the day- we have to choose what we do each day and pace ourselves so that we have something in reserve at the end of the day.

Recently I saw a reference to a different yet similar explanation of fatigue – if healthy people begin the day with a tank full of gas in their vehicle, people with MS get perhaps only a gallon or two to get where they need to go on any given day. Our tank hits empty long before others’ fuel supply.

My fatigue comes with physical activity – I can be mentally engaged all day long, just don’t require me to get up and move because this is when the exhaustion hits hard and fast. My central nervous system isn’t wired like a healthy person, and the signals are constantly corrupted and move slower. Due to balance issues, my body is always fighting to keep me up right, but in exchange my energy reserve is used much more than a healthy person. My body is in a constant battle almost all the time when I move and that is the main source of my fatigue. It is different for each and every one else as to what brings on their fatigue.

What seems to be the same for all of us, though, is the inability of those close to us to really understand why we have to stop. MS blogger Trevis Gleason calls this the ‘lay down or fall down’ option, and rightly so. If needed, our body will stop us if we aren’t smart enough to do it ourself. As we learn to live with our MS, we also have to learn to be smarter about pushing through when we should be hitting the brakes, but getting those around us to understand can be hard or even feel impossible. It is a tough lesson to learn and it took me a while, but I am no longer cajoled or prodded into pushing when I just don’t have it to give. I hope you have learned to slow down when necessary and not push until your MS becomes the boss and stops you in your tracks.

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (48)
  • LyndseyC
    1 year ago

    I still don’t understand the fatigue thing! I know I have it, though for me it’s specific and localised, then I can go again after a little rest. 20 minutes is my limit without my crutch and extremely frustrating…..

  • gmc
    2 years ago

    Someone may have already posted this, but I’ll not read all comments to see. I finally found a way to describe my fatigue to my husband. My fuel tank is empty, but the gauge is broken so I have NO warning. It just ends.

  • DonnaFA moderator
    2 years ago

    Hi gmc, thanks for sharing that brilliant tip! It puts the experience completely in his frame of reference! -All Best, Donna (MultipleSclerosis.net team)

  • Mariella
    2 years ago

    Thank you Laura. Many years with it, and 1st time I get to hear about the “Spoon Theory” and the fuel tank example. I liked both. That is how it literally is. No one can compare their regular life exhaustion with ours. 🙁

  • irma
    3 years ago

    Hi Laura,

    I don’t know if I have fatigue. When I’m still, I feel like I need air, or when I’m having a conversation with my friends. I’ve been diagnosed with MS since 2003. Is that fatigue or shorten of breath? I feel like had I ran a marathon. I noticed that it is more problem than before.

  • Laura Kolaczkowski author
    3 years ago

    Irma, MS fatigue comes in all styles and is associated with the central nervous system. What you describe sounds to me more like a physical problem, but please remember I am in no way a medical expert of any type, One thing that immediately comes to mind is I wonder how active you are regularly – I know when I sit around more (and sometimes it can’t be helped!) it is harder to get up and move and sometimes even breath. Our lungs need a good workout just like all our other muscles to stay fit. Please be sure to talk to your doctor about this shortness of breath. There are too many things that could cause it, including heart problems. be proactive about your health and get it checked, ok? best, Laura

  • Isalady
    3 years ago

    Fatigue hits me when I get hot. I explain it as if I am the witch in the wizard of oz and someone just threw a bucket of water on me. First my lower back muscles give so I can’t stand upright, then my legs starting at the thighs give out and I can’t stand at all. If I am lucky enough to be near an object to sit on, I can usually “recharge my battery” enough to get somewhere comfortable but a time or two I have had to literally crawl or just lay on the floor/ground until I have enough energy to rise again. I’ve learned the warning signs and that I HAVE to listen to my body. But I overheard a “friend” say…”oh, she is just being dramatic” when I said I had to sit down before I fall down.

  • Sue
    4 years ago

    I really feel for all of you who suffer from MS fatigue. I don’t seem to have this issue now, but what I do have is the inability to move quickly in the a.m. It seems like no matter what time I wake up I rarely can get anywhere when I want to. Makes it hard to get to work on time, etc. I just am very slow in the morning (and just a few years ago I was dropping my high school daughter off at school by 7am and heading to work every day). Anyone else dealing with this?

  • itasara
    2 years ago

    Sue, I feel as you do. I don’t have fatigue usually but have a hard time getting going. I know the difference from being tired and having fatigue. Actually I’m a night person but like you I can mentally be engaged til 3 am from whenever I get up but doing things like going exercising etc. I just don’t feel like doing it.I’m a procrastinator most of the time. I’ve pretty much been that way a good part of my life even before I ever knew I had MS which was at age 57 the first major sx ( 11 yrs. ago.) I did go through a period of from when my first child was born till my last child is born when I did exercise go running and doing all those things. Before that, growing up I was never a physical person I hated gym at school and I didn’t move that quickly and was not much of a sports enthusiast. I was more the musical-art type. And after I stopped exercising when I got our first computer which was more mental exercise rather than physical, I just didn’t do as much but I had no idea then that I never have MS; Who knows I might of had MS all along and didn’t know it. I managed to get through school, high school, college, but it was never easy for me to get up in the morning ever. I worked for about three years when I graduated and I was married my last year of college; I was grateful that I did not have to go to work after that. Mentally I wanted to but I Preferred to stay home and do other things including eventually raising my family.

  • itasara
    2 years ago

    I relate to you, sue. I don’t think I have a lot of fatigue although some days I know the difference between being tired and having fatigue. But I do have difficulty getting moving in the morning getting myself going and I’ve never been a “physical “person even before Avery knew I had MS and I didn’t know that until I was 57

  • Mary K.
    3 years ago

    I suffer from fatigue and I understand the waking up part. For me it’s almost like slow motion, I’m awake my brain and body aren’t talking to each other or the messages aren’t getting where they need to be fast enough. If this make sense to you? This is what has worked for me. Before I go to sleep, I move every part of my body from head to toes, as way to make sure my brain and body are commenting with each other in real time. Waking up before I get out of bed I do the same thing starting with the toes moving up ward to my head once every part is working then I get out of bed. Moving slowly at first making sure everything was work together. I’m not saying it will work for you, because, I’m not you we are all different it may work for you. Hope you understand what I’m trying to say.

  • cdexter
    4 years ago

    I do not have M.S butmy husband does….I really need some help from another prospective….While I know what he goes through cant be easy i also know we have 4 little girls and I cant do it alone so what is the answer I dont want to be insensative but I need his help even if just a little bit each day?

  • Laura Kolaczkowski author
    4 years ago

    That’s a great question and let me try to offer some ideas, but since I don’t know his particular physical condition, it is hard to be more specific. Here is a list of thoughts I have, in no particular order-

    Did he do more to help before his diagnosis? in other words has he always been this way and it hasn’t changed or is this new? Either way, it is a point to discuss with his doctors.
    the problem might be fatigue but could also come from depression.

    Are you able to clearly tell him what you need help with? I know I expect my husband to be psychic at times and just ‘know’ what I need him to do. That just leaves me frustrated and him clueless.

    Even if he is confined to not moving much, he can still spend time with his girls and give you some help. Simple things like playing a board game or reading to them would shift the responsibility of them from you to him for a short while. We know it’s easier to fix a meal in the kitchen by ourselves than with children underfoot.

    Is he open to talking with you about all of this? If so, maybe you two can get a family member or a sitter to come and give some quiet time that you two can go out – even for a walk around the block – to talk. See if perhaps between the two of you you can come up with a list of things that need to get done and identify what he is able to do.

    You are not being insensitive to him – you are important in this picture too and your girls need you. It is hard to prioritize yourself, but please find a way to make you #1 – d you have an older neighbor girl who would be able to come and assist as a mother’s help a few times a week? How about family – would someone come stay with the girls while you go to the library or the corner coffee shop for a break? It’s important you find ways to have small times for yourself.

    I hope you find a way to reach him and get some small changes done. You are wise to be looking for answers now rather than let anger build up. Good luck and best wishes, Laura

  • Kathy
    5 years ago

    This is a good way to describe MS Fatigue. I have come up with another way to describe what MS Fatigue is like and how it affects those of us with MS.

    I say that our Fatigue levels are sort of like a light switch. Normal people have dimmer switches on their Fatigue but those of us with MS have ON/OFF switches for our Fatigue levels. When normal people get fatigued it is gradual, but when someone with MS starts to feel fatigued it happens rapidly and hits us hard! At the first sign of fatigue MSers have to rest ASAP or else we’re going to pay for it later by having to rest much longer than we normally would. Trying to work through the fatigue makes it that much harder to overcome for us. If I get to the point where I have to rest, It’s already too late for me. It is so frustrating because I still want to be able to do things, but my body just won’t let me. It’s like having a computer that isn’t plugged in. Yes is is capable of doing a lot of things and processing a lot of data, but if it doesn’t have any power then it is useless.

  • itasara
    2 years ago

    Sorry my thumb hit the wrong button and bingo I didn’t get to finish what I was saying. I have a rather Nightingale type of circadian rhythm him but I’ve never been and never ever even when I was four years old or less. I’ve just never been napper and in the rare instance that I do fall asleep which is in the middle of doing something it’s because I’m tired not because I have fatigue. There is a difference.

  • itasara
    2 years ago

    I definitely do not have that kind of fatigue as I described in another post about. I do get fatigue now and then and it doesn’t just switch on or switch off it’s just there when it is. But it’s probably more mild than many MS people have.I Wirly nap although I can fall asleep once in a while watching TV and working at my computer but I also stay up late and get up late so I have a rather my third

  • Laura Kolaczkowski author
    5 years ago

    Kathy, that’s another great way to explain. I’m like you and push a bit too far and hit that off switch with a vengeance. Actually it’s not quite an off but a whole power grid blackout. thanks for sharing, Laura

  • Kim
    5 years ago

    I usually explain my MS fatigue this way….I never know when I’m going to run out of energy, and I don’t get any advanced warning. It’s like I fall off of a cliff, and I don’t see the cliff coming. This is still difficult for my husband to understand, and we’ve been married for 23 years. (I had MS when we met.) I’ll get involved in a project around the house, and just have to quit, because I can’t continue. The spirit is willing, but the body isn’t.

  • Laura Kolaczkowski author
    5 years ago

    I’m like you – I am a great starter, It is just that finishing that is tough. I don’t know how to get people to understand the fatigue – they either get it or they don’t.

  • Marilou Hatler
    5 years ago

    I love the phrase “lay down or fall down”. We have to know when to put on the brakes. My son recently moved to Virginia. He wanted us to go on a tour in Washington DC at the Museum of Natural History. This was so exciting for me, since I live in Montana, but I knew it would be too much walking for me. My son looked at me with that face “oh what are we going to do with mom”. He ask me if I would be ok. I told him “no I will not be ok, that is too far for me to walk”. My daughter (my support) said they will likely have wheelchairs there for people who need them. My son said they will. We left and did have to walk a long ways then we found a wheelchair. I was so relieved. But after a while I heard my family talking under their breath that one was getting tired of pushing me and another would take turns because they were tired too. I mentioned it to my daughter and she said “you are not exactly light you know”. This really made me feel bad. I just wanted to go home (my son’s) and take a nap. Humiliated and tired.

  • Kaye
    2 years ago

    Marilyn,
    Please don’t feel humiliated! It is okay and “normal”, for want of a better word, to feel fatigue. You told your son you thought he trip would be too much for you. The wheelchair idea was great, but you family probably did not realize the commitment they were making. I think otherwise parties can learn from this. My family and friends, and I now know what it means when I say I can’t do something and we look for alternatives. But it was a hard lesson for all of us. Again, please don’t humiliated for having an illness.

  • skcullers
    4 years ago

    I love my scooter for trips. There are light weight ones you can take everywhere. They even fit in the trunk of s car. I have the Amigo 3 travel mate. Breaks down like the baby strollers in the 70s.

  • Laura Kolaczkowski author
    5 years ago

    My family pushed me in a wheelchair around Disney World last year for several days – it was difficult for all of us. I’m not exactly light, either. Yes, I know it is difficult, but try not to allow them to put you in that position again – you know your limits.

  • ydress
    5 years ago

    i can relate to everything everyone wrote. I have had MS going on 10 years. My son was only 3 years old and now he is 12 and does not understand, no matter how I try to explain to him how tired I am. He is so cute, he says, Mom go for a walk you will feel better. If only that was true. I rarely leave my house, my husband does everything for our son, he runs the business end our our retail store and even cooks healthy meals, just about every night for all of us. Quite frankly I don’t know how he does it however I do remember the days I could keep up and more.

    Fatigue has been a tough one for me the past year. I had 3 episodes in less than 6 months, 2 steroid infusions, now going from no medication for 5 years to so many every morning ( I’m up to 12 pills first thing in the morning) Caffeine makes me nausea however I will drink it everyday so I can go to my son’s evening baseball games. I no longer go out with my husband, too tired and during the day he is busy trying to get work done before he has to pick up our son from school or camps during the summer. I don’t like to drive on so many drugs.

    I don’t think anyone in my family really understands the level of fatigue that comes over me for days, months and this is the first time it’s lasted 1 year. I think this is the first time I am scared of this illness. I do what I can, I try my best to ignore judgment. I have learned to be alone all day long and so tired in the early evenings I can’t do much but type on my computer or text, which my husband makes fun of, he will say who are you tap tap taping too? I’m so sensitive to just about everything my husband and son say to me. They are so close because of my illness, I tend to feel left out and jealous. I hate feeling upset around them or even talking to them, I never know what to say. Fatigue has been hard on my family and harder on me. It’s not easy to stay positive however I am not that kind of person to give up. I always know in my heart there will be better day and days filled with struggle. I have given up on explaining my fatigue to anyone and tend not to put myself around people when I am fatigued because I come off as a quite, ignoring kind of person, which I am not.
    I just want this numbness in my right hand to go away, it’s driving me crazy.
    All I have to say is it could be a lot worse so I am Grateful!
    xo

  • skcullers
    4 years ago

    Medicare now covers psychologists. Great help.

  • Laura Kolaczkowski author
    5 years ago

    Ydress, I hear you loud and clear on so many points about the fatigue leaving you behind. I’m sorry you are in that place right now – here’s hoping there are better days ahead. With all that you have shared with us, I would really like it if you talked to someone better equipped to give tips and advice than I might be. NMSS has great people on the phones 24/7 who might be able to help you develop techniques to continue the positive attitude you have shown here. AndI hope the numbness goes away – I have a right ankle/foot combo that does the same thing and it drives me nuts! best, Laura

    PS yes, it could always be worse but this is what you are dealing with in this moment, and so it is equally important.

  • ydress
    5 years ago

    Thank you Laura for your kind words. I know it’s not easy for any of us struggling with MS, even though we all go through different experiences they are all pretty much the same, except for the ones that loose site and walking. I can’t even manage what those MS friends of our go through.
    I have a MS appointment today, UCSF in SF has build a new building for MS, it’s very nice and they even have a calming room. Today I am not looking forward to with all this numbness, I know it will be more poisons pumped into my body, Ugh! Your ankle/foot situation sounds worse than my hand. I text and type on my laptop everyday, the only thing that give me pleasure during my fatigue downtime. I will be very disappointed it I can no longer do these calming things for me.

    Happy 2013 Fourth of July to all my MS friends and community!
    Sending health and happiness you way. xox
    ydress

  • Lisa
    5 years ago

    I use to explain that my fatigue was like when marathon runners hitting “the wall” at 20 miles-BIG MISTAKE!! Because marathon runners would and could continue, but I couldn’t! The spoon theory was too much to explain, so I have been going with the gas tank explanation. It has been helpful, but I still get nasty remarks from some people, even my husband! If I do too much, he tells me “I told you so!” But if I don’t do everything that I need to do, he gets upset! Can’t win either way!!!!

  • ydress
    5 years ago

    Your husband needs to read this article and stop being that way, it only causes you stress and that causes our illness to get worse. Men can be so insensitive to what a woman needs let alone one with MS. I’m having a hard time with that one myself. I sent this article to my husband to read to my 12 year old son and I have not heard anything from either of them. I was moved with the words my brother in law sent me after reading this article and the one about infusion. I’m assuming when you have to live with a person with MS your empathy wears thin, so perhaps not really acknowledging it in words is there way of thing everything will be just fine.
    Yes I too feel like this is a no win situation.
    Good Luck
    Ydress

  • Laura Kolaczkowski author
    5 years ago

    Thanks, everyone, for your thoughtful comments. It is frustrating at times to want to go but not having the full tank to get through. It sounds like everyone is smart and finding ways to make it through each day at a time. Best to all, Laura

  • EU
    5 years ago

    The Spoon Theory is a thoughtful way to remind others of how fatigue can set in unexpectedly for those with Multiple Sclerosis and other debilitating diseases. Simple tasks can become monumental, and the unpredictability of the fatigue is the worst part.

    Rochelle Denning
    Founder, http://easyundies.net

  • Neva
    5 years ago

    When my husband is sick and complains about how tired he is, I always say something like, “Well, now you know how I feel every day!” He always replies, “Wow! I didn’t realize! However, when he is well, all of the “enlightenment” goes away.

    However, because I fatigue so easily, he has ended up having to do almost everything for me, and he doesn’t complain, so I am really blessed!

  • candyman
    5 years ago

    Nice article, well put. I appreciate hearing/reading how others use comparisons and analogies to describe their MS Fatigue. Explaining my MS fatigue to someone is one of the more difficult things I deal with since being diagnosed. It’s as frustrating as the actual disease is. I was 32 and wanted to be able to quickly explain why I was tired or just not up for doing something. I tailored my explanation to my audience making it easily understood and to avoid too many follow up questions. When you have MS it’s exhausting trying to explain why you’re tired when you’re tired. I simply described my fatigue to be very similar to how you feel after drinking/partying in the sun all afternoon. You’re drained and groggy. Stress and heat are my kryptonite. Chasing after my 2 little ones for even just a few minutes as well. It’s the head on a swivel parenting style, ensuring they’re ok and not putting themselves in harm’s way or causing trouble that can zap any energy reserve I may have had. I know it’s different for everyone, just know your limits and plan ahead. I am extremely lucky and thankful to have a wife who knows what I’m capable of. We were married just 6 months, she was 4 months pregnant with our first when I was diagnosed. About the same time my wife was laid-off from the company we both worked for. Whoever said the first year of marriage was the toughest wasn’t joking. 5 and half years later we’re still together and getting stronger everyday.

  • dkr55
    5 years ago

    Another huge difference for me, is that it isn’t simply a matter of doing so much and running out of energy sooner than one might without MS. I have more and bigger fluctuations, regardless of how much or how little I do to expend my energy. Some days, I just wake up with no energy, for no particular reason. Some days I can move along through the day with a reasonable amount of activity, then another day, I will just hit the wall in the middle of it. It is quite erratic. No predicting it or accounting for it.

  • Katie Siepierski
    5 years ago

    That’s exactly how I am. I know within 20 minutes of waking up if I’m going to have a “good” day physically. Some days, I have absolutely zero energy and all day long my body feels like I just woke up, can’t make a fist, super weak, achey, etc. Some days, I wake up and actually feel AWAKE and I want to take my 2 year old sonfor a walk, go to the park, go grocery shopping, organize the shed, clean the house, make a big elaborate dinner with brownies for dessert! Ha, but 90% of the time I get stopped around mid afternoon and I just can’t continue. Or if I can, then I pass out before it’s even dark out yet, or I pay for it the next day and I can’t do anything. I never have any idea how I am going to feel the next day and that’s a hard pill to swallow (no pun intended) in itself.

  • ydress
    5 years ago

    I can definitely relate to what you are saying. I know it’s even worse when you have more than yourself to take care of. My son was 3 when I was diagnosed however 9 years later severe fatigue is getting the best of me.

    Just saw my doctor yesterday and I have to get anther MRI, if there is any indication of a new lesion, I will have to endure anther 3 day steroid infusion which I have already 2 this year and 3 episodes in less than 6 months. This is why I am severely fatigued. I’m not on anything to slow down the progression of this illness however I was signed up yesterday to start the BG-12 treatment. It takes 2 months to work and your sick until your body can handle the medicine. What else is new, meds, infusions, caffeine, MRI’s all make me feel nausea.

    You are not alone in what I now call my MS MOTHR SUCKER with a F 😀 HA
    xox

  • ScarlettOH
    5 years ago

    You’re right, dkr55. For me too, there’s no predicting energy or reserves. I wake up some mornings feeling like something the cat wouldn’t bother to drag out, and on those days there’s no point in giving things the old college try. No rhyme or reason. I can be pretty sure, though, that even if I start out fairly well, the wall-hitting time will come long before I’m ready.

  • Sonya
    5 years ago

    Laura,
    I have been out of town & am just now playing “catch-up”. I enjoyed the article, as always, & had never heard this term. It certainly describes how my daily energy is provided. This has been the most difficult thing for me to learn, rest when my body says rest. After 6 years, I am learning, & I do listen.
    The fatigue seems much greater for me in the heat of summer, with the amount of humidity in the area I live. I do all my outdoor chores very early, & always wear a cooling wrap around my neck.
    Take care~
    Sonya

  • carrie7426
    5 years ago

    I often liken the fatigue to trying to get somewhere and walking through water to get anywhere/anything… in flippers.

  • Carol
    2 months ago

    That’s remarkable. I feel like that sometimes with my fatigue. Other times, it is like so many others that were mentioned. It varies, so I never know what that particular day will be like.

  • Ferretdancer
    5 years ago

    At the start of the day I don’t know many “spoons” I have to use…

  • dskotsrose
    5 years ago

    dealing with fatigue every day is common for me now and i just deal with it as most meds for pain or the fatigue just make me feel foggy and bother my stomach so like many others i just deal with it…. my dad never understood why i am always tired. he had a minor stork this past feb and now is starting to understand as he tells me he just does not have the energy he use to he is 83. i know if i eat right and get sleep i feel better but with pain all the time or most of it sleep is not always doable. i just keep telling myself just get one thing done today and you will be ok somedays i do some days i dont but i carry on and deal. giving up has never been an option and i think anytime naps are good….

  • ScarlettOH
    5 years ago

    Yup, there’s really no explaining this to those who haven’t experienced it. I simply hit the wall much faster than I used to, and then it’s time to pack it in. I’ve learned that trying to push past my fatigue is futile. It doesn’t matter how much more (or even how little more) I’d planned to accomplish, how many more stops I’d planned on my errand run, or what I had in mind to cook, when it’s over it’s over.

    This is complicated for me because I’m getting quite old, so I don’t know how much effect that has, but somehow this seems different. To me it seems more like recuperating from major surgery. One minute you feel fine, then expend a tiny bit more energy than you actually have and you’re stopped in your tracks. So yes, I’m old, but I’m not decrepit quite yet. But I am wiped out more than I want to admit.

  • Sonya
    5 years ago

    ScarrlettOH,
    Great way to describe this terrible fatigue & the effects it has on our days! Even though I know my family is supportive of me, I don’t think they fully understand the whole fatigue part of MS. Saying your tired, has a whole new meaning when you have MS…& yes I know that feeling of when it’s over, it’s over.
    Best of luck to you~
    Sonya

  • synapticmisfire
    5 years ago

    Very well put. When I first experienced catastrophic fatigue, I tried “mind over matter” to “power thru it.” It quickly became very clear that this strategy only makes things worse. I liken it to a car with a low battery – if you crank it too much, it will completely die. The next day, the battery will have built up enough of a charge to still crank, but for a much shorter period. The moral: don’t crank yourself till you’re all used up because you’ll regret it later. I’m very lucky to have a wife who, after 12 years of dealing with this, understands it almost better than I do and orders me to rest when I overdo it.

  • DianeG
    5 years ago

    I agree with you. I’ve likened the fatigue to a battery in a flashlight (same example as your car battery!) It’s really nice to have people around you who truly understand this struggle. My family is sort of divided about it; some think I can do something if I really want to do it but there are others who get it that I just can’t do ___ (whatever I’m being asked to do.)

  • Christie Germans
    5 years ago

    It’s hard but I try to slow down. Resting right before big events or a big day seems to help a lot. Or, allowing myself to rest/snooze on a Sunday! Hope you’re well. Best, Christie

  • Denise
    5 years ago

    yeah, imagine how tired you would be if your blood didn’t flow properly back to your heart and filled your brain and spinal cord then drained slowly through small collateral veins…. FIX CCSVI in MS.

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