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Living Well with MS: Battling Fatigue

Living Well with MS: Battling Fatigue

Somebody zapped my energy and I just can’t seem to get going.  Does that happen to you?  There’s no good reason for it like having little kids to keep up with or being sick.  I’m just tired, so very tired lately.

One of my most disabling symptoms in the first years after the MS diagnosis was fatigue.  I could get up in the morning, feel normal, and crash shortly after noon.  That presented a challenge as my workday, teaching music lessons, would begin close to 3:00 pm.

My husband (my boyfriend at the time) was sweet enough to give me an alarm clock to keep specifically near the couch as that was where I would crash.  I used that alarm clock regularly for months upon months every day.  When I talked to my neurologist and MS nurse about the fatigue, I was prescribed a medication and was told that coffee helped a number of people with MS fatigue.  I gave both a try with some success, but not always total success.

Fatigue

After I switched disease-modifying treatments in 2009, I realized that I hadn’t been fatigued.  I was no longer feeling the powerful urge to be a lump and do absolutely nothing.  As the drug I switched to was prescribed for my RA, I wondered if the fatigue was really RA-related rather MS-related.  Either way, fatigue is fatigue and it’s no fun.

The treatment I use for RA, Rituxan, has been studied for use in MS.  The trials in relapsing-remitting MS had positive results but the drug company chose to proceed in ongoing trials with a very closely related medication instead.  Since starting Rituxan, my RA has improved to the point that now I know what remission is and my MS has become quite stable.


Rituxan is a monoclonal antibody therapy which targets CD20+ B-cells and basically causes them to self-destruct.  It is given by intravenous (IV) infusion with treatment rounds separated by several months.  For me, as the effects of the therapy begin to wear off, I notice subtle symptoms returning.

The last couple of weeks, my toe joints have been a bit stiff.  During the past few days, the smaller joints in my fingers have complained with a whimper but not a full out cry.  Perhaps that’s why I’m so tired…the fatigue is returning because it’s getting closer to time for another round of treatment.

Yesterday, I slept several hours during the middle of the day, not all at once as I kept trying to wake up fully and do something productive.  It just didn’t work.  Today has been much the same.

Fatigue makes me feel like a heavy lump which can’t think straight and doesn’t want to do much of anything.  Do you know what I mean?

Perhaps I should rally myself to GET UP and go take a shower.  That might help; as I skipped it yesterday, I’ll certainly smell better.  It should also make me feel better.  Then I’ll go have some coffee.  It’s a little too late in the day to take Nuvigil as that would keep me up tonight when I want to go to sleep and insomnia is definitely not something I want to trigger.  Been there, done that before.

So, that’s it.  Decision made.  I will get cleaned up, drink some coffee, and find something to eat for lunch.  Sounds like a plan.

What do you do when you get fatigued?  Do you ever talk to yourself to get motivated to do something, or is that just me?  Please share your story.

Lisa Emrich | Follow me on Facebook |Follow me on Twitter | Follow me on Pinterest

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

  • JimUrb65
    8 months ago

    I had the last 2 days off from work, thought I could get some things done around the house… but I tried coffee, going for a walk, taking my awake meds. But I just couldn’t get any mojo going at all. No energy, can’t focus, mind can’t land on 1 thing. I just don’t know, it is. Struggle even to type tho without falling asleep. I haven’t done a thing all day long. TIRED

  • lanas42
    7 years ago

    I know exactly what your saying. Feel like i ran into a brick wall and can’t go any further.So i just try to sleep for a little while. Then i get up, wash my face, have a cup of coffee (if it’s still early in the day) or a soda.Sometimes i put a cold wash cloth on my forehead or around my neck. That helps!!

  • Deb Padovano
    7 years ago

    I do not have MS but my 30 year old daughter does. I constantly worry that she is not able to rest when she gets tired. Due to her responsibilities and demands of friends she is not able to just go to sleep when she is tired. She often comes to my home and will lay in my bed and just crash. I try to tell her that her MS has to come first and taking care of herself has to be number one. She has never been the kind of person to be so tired and she is fighting it tooth and nail. I learn so much reading other MS patient’s stories and I want to say thank you for sharing them….xxxooo

  • Lisa Emrich moderator author
    7 years ago

    Hi Deb,

    Sounds like your daughter has a very supportive mother. It is difficult to learn how to listen to your body and give it what it needs. With MS, it is sometimes hard to predict just when you need/want to crash. She obviously feels comfortable enough to do that at your house.

    If your daughter feels that the tiredness and fatigue is overwhelming, she should definitely talk to her neurologist about what she can do to help alleviate some of that. Sometimes, a medication may be the answer; other times, working with a physical therapist may be very helpful. It depends upon the type of fatigue.

    I hope that you and your daughter continue to do well. Thank you for sharing.
    Lisa

  • ydress
    7 years ago

    Hi Deb,
    For starters Deb you are a wonderful mother being involved with your daughters illness. It’s not easy to be diagnosed with chronic illness that has no cure for the rest of your life. When I was first diagnosed I was in denial for many years and maybe still am after 9 years. I know what your daughter is going through she is so young. I was the same kind of person like her.

    I had my own high end fashion consulting business for 15 years, working with demanding Fortune 500 families, We decided to open a retail store so I could ease my way out of bing on call for my clients. Unfortunately my clients did not make it easy for me to leave, so I was running my stores, buying 3 different markets, woman, men, maternity and designer kids. traveling, buying, merchandising, Windows, dealing with employees and still styling my demanding clients away from the store.

    I was married at 37 to wonderful I dated for 10 years before we married, at 39 opened store which created stress on my relationship ( advise never work with your husband), at 40 I gave birth to my son and at 43 I was diagnosed with MS. Needless to say it was overwhelming being a wife, mother, career mom and now dealing with illness.

    When I was first diagnosed, you are in denial. I’ve had this illness for 9 years and I am still in denial praying it will not get worse however it does!

    MS was my wake up call, it took the first year to start letting the work thing go. Not an easy thing to do, when you are used to being such an independent woman.

    The first three years my health was my full time job, I took such great care of myself and learned the Art of Relaxing (that was very hard for an A personality) Doing this for myself I was able to go off all 12 pills I was taking and daily injections. I have been so grateful the next 5 years, I was MS free and medication free, you still have your ups and downs because of MS but I had no new lesions.

    Unfortunately June of 2012 last year my MS has reared it’s ugly head again June 2012 with 3 separate episodes in under 6 months. I’m struggling now with severe fatigue for the past year, that only allows me to do very little or nothing at all. All the new medications I’m taking has not been easy on my body. I hate the way my body looks now after gaining 20 pounds with severe fatigue. This round of relapsing MS has taken a toll on my marriage, son and my mental state.

    If I could give your daughter one word of advise, she needs to put her health first no matter what. Working causes stress and stress will make MS worse. I loved what I did for a living, being a top fashion stylist was not work for me. Yes I will admit I was a perfectionist and workaholic. For people with A personalities this will be the hardest thing for them to implement. It must be done in order for this illness NOT to get WORSE and believe me, it does.

    You can never prepare yourself when this illness flares up and the amount of drugs it takes to ease the pain however if you learn the ART of RELAXING every time an MS struggle will be mentally and physically easier to handle.

    Just be there like you have and try not to tell her your opinion unless she asks, being there making meals and giving lots of hugs goes a long way. Always ask her what does she want or what she wants you to do for her.
    NEVER ask her how she is feeling, she will tell you when she is ready. I can’t stand that when people ask me that. Better to just let her have some kind of control over her illness with the people who love her most, ask her what she wants or what can I do. When a doctor tells you your health will be a struggle for the rest of your life, it’s very hard to listen other people that have no idea what we go through make suggestions. There are some great books on MS, what not to say that can really help.

    Good Luck you very Good Mom
    Yvette

  • ydress
    7 years ago

    I have been dealing with severe fatigue for the last 10 months however it really started in Jan 2012. I was diagnosed 9 years ago at the age of 43. I’ve been lucky enough to be MS medication free for last 5 years. My day would consist of daily Bikram yoga 2 doors down from my home and working out at Crunch gym 1/2 block away 2-3X week.

    In june of 2012 I had an episode on my ride side, it effected my head, neck, arm, hand and fingers. I was put on a 3 day steroid infusion, it helped a lot however I still had constant numbness in my right hand and a few fingers. When it gets unbearable I take a Xanax.
    Xanax seems to relieve all my numbness, unfortunately it adds to my tiredness.
    July 2012 till the end of the year all I could do is sleep and lay around watching TV. I would have to force myself to do anything and I felt very disconnected with my life. I have a husband of 16 years together for 26 years and a 12 year old son. Needless to say, with all this severe fatigue, I started getting down on myself, feeling useless around my own home and having no one who really knew what I was going through to talk too.

    After 2 MRI within 4 months and a 3 day steroid infusion later I was told I have a total of 3 new lesions, the one on my C2 right side, 1 lesion on my brain and 1 lesion on my C5 spine.

    One thing I did 9 years ago before I was diagnosed with MS, I stopped drinking alcohol just to set a better example for my son and within 5 months I was diagnosed with MS.

    I believe the severe fatigue came from getting all the lesion so close together, my body just couldn’t take it. Even my MS doctor said she has never seen this type of fatigue before. I was put on 75mg of Venlafaxine. That did not help with any of my symptoms, so I decided to start drinking red wine instead of popping so many Xanax a day. It really helped at first.

    Jan 2013 I was preparing dinner, nothing felt out of place mentally or physically only tiredness. I had to force myself to walk to our neighborhood market 1 block away and make dinner. I was drinking red wine while cooking, after I finished preparing the meal I went back into my room to lay down. This is where things got foggy. I don’t remember much my husband and mom had to fill me in. My husband came home with my son and walked him to Karate around the corner, he felt there was something different about me, he asked if there was something wrong, I said no just tired. When he returned from walking our son, he sensed something was really off with me. He asked again, I said I was fine. He pretended to leave by opening and closing the front door, then walked back to our bedroom. I apparently had a handful of Xanax and took them all. When he asked me what did I take, I threw the empty prescription bottle containing 40 or so pills. He immediately called an ambulance and the last think I remember is laying on my bed seeing, 2 policemen, 2 firemen and 2 paramedics.
    I was taken to the ER and woke up the next day in anther facility that was holding me up to 72 hours, to make sure I would not harm myself. I have never wanted to harm myself or end my life, I’m not that kind of person. I was able to talk to the doctor and the only conclusion he could come up with is the combination of Venlafaxine and red wine was the culprit. I was released in less than 24 hours, needless to say I have not drank on this drug since this has happened. My MS doctor kept me on the 75mg of Venlafaxine and recommend a psychiatrist to help out with the dosage of drugs to take for fatigue and depression. He specifically works with people that have MS, because medication works differently for patients with MS. This doctor started me on 100mg of Wellbutrin and every two weeks he had me up the dosage 50mg. I was no longer depressed and felt connected to my life, I was so grateful however still severally fatigued. I’m now taking 250mg and my doctor wants me to start taking 300mg however anther incident happen to me leading me back to the ER.

    The last week on a Saturday, we took our son to his baseball game. The first hour of the game I started getting a severe pain in my stomach. I have never had a pain like this before, I told my husband and he said should I take you to the hospital. I said no I will be fine and 30 minutes later it went away. By the end of my son’s winning game, he started feeling sick with a sore throat and lost his voice by the time we got home. Two hours had passed and I started getting that same pain I had in my stomach but in my chest. I thought it would go away like the stomach pain. My husband got home and we started watching a movie and 30 minutes into it, the pains got so severe I was having problems breathing, I stood up the pain got worse, it was so bad bad I was heaving over and crying. At this point my husband drove me to the ER. I had him go back home after I got check in, to be with our sick son. 10 hours later 2 EKG’s, 2C-scans, 2 blood tests and a sonogram, they could not figure out what caused this pain, so they let me go home at midnight. What a nightmare this year has started out to be for me.

    I’m still battling severe fatigue everyday for almost a year now. I have put on 20 extra pounds, I know makes me more lethargic however with so many meds and lack of movement it’s hard to get motivated. I was once a very motivated person staying healthy and working out everyday for 5 years. I have to force myself to go for a walk.

    I live close to the beach in Crissy Fields located in SF. You would think the view alone and nice weather we get would get me motivated to get out of my house. I forced myself to to go this morning after my son left for school. I walked from my house in the Marina, to the golden gate bridge and back. It’s around 5 miles however you would think the fresh air and long slow walk would motivate me to do other things however it never does. I was back home laying on my bed.

    Severe fatigued has taken over my life and I have not been put on any medication for strictly fatigue. The Wellbutrin at a higher dosage helps. I know my doctor will start me on Adrenal in a month also I will be starting the new drug BG-12. It’s hard for me to believe my life was very different 10 months ago and for 5 years I was medication free. Now it’s one drug after the next, UGH!

    I think if you have someone with MS, that can walk & talk with you everyday that would help with the weight problem, which I’m sure would help with the fatigue. I wish I knew someone that lived in my neighborhood to walk and talk with. All my friends work or have too many kids to tend to.

    We all suffer differently, I still feel with all that has been happening to me, everything happens for a reason, I just have not figured out what that reason is YET.

    Stay well my tired friends, I hope there is a cure for all of us soon. I will continue to have Faith and enjoy my down time.
    Thank you for taking the time to read my story.
    Yvette

  • Lisa Emrich moderator author
    7 years ago

    Yvette,

    Thank you for sharing your story. You have been through a lot in the past year or so. While reading your story, I kept wondering if the drugs you mention truly match what you say they were prescribed for. Example, xanax is not used to treat numbness, but anxiety. Venlafaxine (Effexor) is a powerful anti-depressant. Wellbutrin is also an anti-depressant which works differently. (I take wellbutrin and have found it to be very helpful.)

    There are other medications which are typically tried to combat different symptoms related to MS. Definitely talk to your doctor and ask about all your options. Then discuss why one choice is better than another for YOU.

    I hope that the rest of this year is better than the beginning. Springtime is here finally on the East Coast. Being able to comfortably get outside is very nice. I imagine that the weather is also beautiful in San Francisco.

    Please take care of yourself. Be well.
    Lisa

  • ydress
    7 years ago

    Thank You Lisa I enjoyed reading your comments. the effexor and Wellbutrin combined together have worked to get rid of my depression. Xanax since I do not drink anymore helps with an over worried day and also helps with my numbness in my right hand. I’m still in bed getting emails handled and the numbness in my right hand is bothering me. I normally don’t have to xanax until the evening. Today it started up right away, however I do not want to sleep my day away so I’m going to ear breakfast first and see how I feel. The weather is bight and sunny outside and I have no motivation to go outside. I did try to get a friend to walk with me today however she was too busy.

    I was also told by my doctors that people with MS depression and severe fatigue can not take the amount they give to people without Chronic illness. I think my doctors wanted to handle my depression, which they did with the mix of the V & W thinking that would remedy the severe fatigue. Now that it has not, my doctors are now going to work on my fatigue on my next week’s visit. It’s hard when you have this illness, it takes so long to figure out what combination of medication is going to work for your body since everyone is different.

    Happy to hear you are finally getting better weather in the East Coast, I would never survive, I’m so spoiled with our West Coast weather, never too hot and no snow unless you drive to Lake Tahoe. Hope you are doing well and I will keep everyone posted on how my fatigued is resolved.
    Again thank you for listening
    Yvette

  • CeliaB
    7 years ago

    Overwhelming fatigue goes hand-in-hand with my RRMS. Vitamin B12 deficiency has the similar symptoms as MS, so I have started getting a the injection. I use Neuribion Ampoulles which contain: B1 100mg, B6 100mg & B12 1000mg. Although the physical effects of MS stays the same (numbness, heavy legs, balance etc.), my mental alertness is greatly improved. It really helps. My doctor prescribed the Vitamin B injection once a week for four weeks, then once every two weeks for 6 weeks and then once a month. I also found out that my Iron was “chronically low”, maybe that also affects my endurance/energy levels. Try to eat a balanced diet and listen to your body. When you need to rest, REST. Thank you for sharing. CeliaB.

  • Lisa Emrich moderator author
    7 years ago

    Celia, That’s very interesting what you share about vitamin B12 deficiency. Have you noticed a difference with the injections? Also, your suggestion to rest when you need to rest is excellent! Sometimes it’s hard to learn to listen to your body.
    Lisa

  • Nick
    7 years ago

    It helps me to read these comments. I am sorry that y’all are suffering through these symptoms but it helps me to know I am not alone. I am overweight and my last neurologist just kept telling me to lose weight and the fatigue will get better. What he never could understand is that the fatigue makes it nearly impossible to be as active as I need to be. I struggle because sometimes my legs get so heavy that I am not sure I can keep walking around and I have not done anything to explain the feeling. I try so hard to convince my self I can do more but I can’t do it all. Sometimes in the middle of the day I just have to nap, it isn’t that I want to I don’t really have a choice. I have been lucky so far and I have been able to hold out until a less inconvinient time to get that rest but I am afraid I am just going to fall asleep one day and it is going to cost me my job. I have to see my neurologist at the end of the month and I am going to ask about Ritalin because I have heard it helps. I know losing weight would probably help with the energy but I don’t know how to make that happen.

  • Lisa Emrich moderator author
    7 years ago

    Nick, you are absolutely NOT alone! I know what you mean about a doctor just wanting you to lose weight. Before I was diagnosed with MS, I had a doctor who was pushing me to lose weight and was attributing my weak legs to being out of shape. She was partially correct.

    A couple of years ago, I made an effort to lose weight and found that record keeping really helped. I used an app on my phone to record what I ate and I weighed in weekly to document any changes. I didn’t really change much of what I did besides making slightly better food choices and lost 40 pounds in 6 months. If you haven’t tried journaling, it might help. Just sharing my experience.

    I hope that your fatigue improves. It’s a tough battle to face sometimes.
    Lisa

  • Sharon
    7 years ago

    Interesting to read what you all had to say. The one thing I learned is that MS is very personal in its symptoms. I have been taking Ampyra and along with improving my walking it has made the fatigue more tolerable. What it really does is make me more alert although I do still get tired. I don’t sleep in the middle of the day anymore, I just feel the need to rest. I drink coffee in the a.m. but take my caffeine cold after 11am….diet coke.
    I also make sure that I don’t pack my day with too much to do. I take it easy on myself. When my kids were young I didn’t have that option but now I do so I build rest time into my day.
    The fatigue in quite debilitating.

  • Lisa Emrich moderator author
    7 years ago

    Sharon, I love my diet coke too. I have heard other people report that Ampyra helped their fatigue as well. I’m glad that it works double-duty for you. Maybe others will chime in with their experience.
    Lisa

  • Cheryl passarelli
    7 years ago

    Aww Sharon. I concur with your attitude. Do what you can. And be happy with it. I’m glad your fatigue is better.. I’m at a feeling totally alive place. Everything feels good. I just hope by the walk 4/13 Portland. I feel this good. I think it’s a natural high. Fundraising is a lot of work. And I’m loving every minute of it. And I do most of it at my own convince of my own home.
    Feel better

  • Kathy
    7 years ago

    I am suffering from fatigue right now. By the end of my 8 hour work day, I feel almost like I’ve been drugged. I too feel useless at times and do not want to be a burden to my husband. He is so good to me and recognizes when I do not feel good. Currently I do not take anything for my fatigue, just trying to suck it up and ride it out until I see my doctor on April 30th.

  • Lisa Emrich moderator author
    7 years ago

    Kathy, that’s wonderful that your husband understands and supports you. You are very lucky. I’m very fortunate that I don’t have to go to a 40-hour/week job. Being a freelance musician/writer has given me a bit more freedom to listen to my body and rest when necessary. Working from home has helped tremendously.
    Lisa

  • Nicole Lemelle
    7 years ago

    Fatigue pretty much calls the shots in my life. I take Ritalin for it.

  • Lisa Emrich moderator author
    7 years ago

    Hi Nicole,
    Does the Ritalin really work? I’ve only tried Provigil/Nuvigil and caffeine for fatigue. I’ve wondered about other drug options.
    Lisa

  • Cheryl passarelli
    7 years ago

    Hi Lisa. I was taking provagil in the 90’s. maybe I became immune, it just didnt do it.. Now I take Ritalin . I like it quite well. But you get IV of it? I only had pills maybe I misread. Gotta check. :). . But yes Ritalin is good deal. I read your story. Sounds like mine. Fatigue is so frustrating. I can’t walk to much anymore. When I try to even lift my legs to get up ugg. They are stuck. I feel like a lead blob when I’m like this. Feeling useless. But that’s just my mind. It’s a hard one to get over. Fight fight fight. I’m fatigued just fighting MS on a daily basis. Lol.
    I’d rather be productive, but I except what I have, if I try to push myself it just exhausts me more later. Frustration again. I’m very proud you do so much knowing how you feel.. And fatigue is a rough one.
    I’m glad my parents taught me strength. Patience and positivity.. It’s working to keep me moving.
    I will never give up.. Coffee is my best friend. And five hour energy works real good..zoom zoom. I wish there were more answers . But that is why we walk. To learn more. I’m proud to be rolling in the MS walk year (4). Lets create a world free from MS.!, hope I see you at the walk! I really hope for sunshine:). Now back to my fundraising…..
    Cheryl 🙂

  • Lisa Emrich moderator author
    7 years ago

    Thanks, Cheryl. Absolutely never give up! I haven’t used Ritalin, but instead the disease-modifying biologic drug I get by infusion is Rituxan. It is prescribed for rheumatoid arthritis. My parents also taught me persistence, patience, and strength. These characteristics have served me well in facing MS.
    Lisa

  • sharon
    7 years ago

    Fatigue certainly is something I can relate too. Also having MS
    it seems about 2pm I start to fade. Even though I have taken Nuvigil at about 6am, which is supposed to be a once daily tablet. My job allows me to sit regurally during my shift. (8hrs) However once I get home, I am pretty much done. Right now I have to do some things, because I am getting ready to move. Telling myself, I have to do something doesent always work. However, what most intrigues me is your use of Rituxan. It will soon be 4 years since my husband passed away from Non Hodgekins Lymphoma. His first course of treatment included Rituxan, to target the B cells. I was unaware of other uses. This is also used for RA? I wish you well and continued good results.

  • Lisa Emrich moderator author
    7 years ago

    I’m sorry to hear that your husband died, even with treatment. Rituxan has been a great drug for me and the infusion nurses talk about how it has changed outcomes in Non-Hodgkins lymphoma. It is also used to treat leukemia, myeloma, and several autoimmune diseases, such as RA, Sjogren’s syndrome, Wegener’s Granulomatosis, type 1 diabetes, and more. The “next generation” B-cell depleting drug which is being studied in MS is ocrelizumab. I hope that the trials are successful.
    Lisa

  • Anita Eicher-Pack
    7 years ago

    I know exactly of what you are speaking… that absolutely overwhelming feeling of tiredness, regardless the amount of sleep and even though I haven’t been doing much of anything to make me feel that way. When it goes on for just a few days, it’s a bit frustrating but I keep telling myself that I just need to keep resting & it will get better. When it goes on for weeks on end, it begins to get depressing. Even though I know it’s a part of MS, I begin to feel that other people must think I’m lazy, and I also feel like I am a burden. Not only am I not getting things done at home, I am relying on my family to do more, even though my husband works long days. It is hard to emotionally accept that I am no longer contributing. Instead, I am yet another something that needs to be taken care of. Each time it feels as though the fatigue will never end, but eventually it does and I can once again at least share in the household chores. I know that there will likely come a day when the fatigue does not end, and will be my existence for the remainder of my days. I do not look forward to this, and will find myself on yet another journey, learning to accept my new reality. I firmly believe that unless a person has experienced this type of fatigue for themselves, there is no way they can imagine how totally consuming it is. If I had a choice, I would definitely choose to have energy and be productive. Life in the fatigue zone is depressing, and that is not where I want to live.

    Thank you for the article. I can definitely relate.

  • lanas42
    7 years ago

    Thank you for saying all that. I feel exactly the same way. The depression bother’s me a lot too. I am on Paxil but all it does is make me hungry and more tired. I can’t keep going like this!!!

  • Lisa Emrich moderator author
    7 years ago

    Anita,
    I think you hit the nail on the head. Unless a person has experienced this type of fatigue, then there is absolutely no way they can truly understand what it does to you, physically, mentally, and emotionally. I’ve been in the fatigue zone for periods of time, and fatigue free for even longer periods of time. Like you, I would choose no fatigue. 😉
    Lisa

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