Self-management of fatigue: More than “taking it easy”

Pretty much everyone with multiple sclerosis has felt MS-related fatigue. You know what I am talking about – not the tiredness that people complain about after a late night or a day of holiday shopping, but bone-crushing weariness that makes you doubt whether you can continue to function for even an hour more, much less until the end of the day. For me, fatigue is often accompanied by nausea and a headache, not to mention a worsening of sensory symptoms, such as tingling feet and the MS hug. With all of that going on, cognitive function goes out the window, adding to the frustration of the whole terrible situation.
 
I attended a session on self-management of fatigue a few weeks ago at ECTRIMS 2013, presented by Dr. Marcia Finlayson, an expert in occupational therapy. She said that she has heard people describe fatigue as a “constant heaviness, like walking in cement” and as “debilitating,” “scary” and “discouraging.”
 
However, she also offered some insight into what people with MS-related fatigue could do to actively fight their fatigue. While you may have heard well-meaning people offer the advice to “rest more” or “cut back on stress” to deal with fatigue, there is much more to successfully making any headway against this symptom. Self-management is defined as a dynamic process of day-to-day management of a chronic condition, in this case, fatigue.
 
There are several different components to successful self-management of fatigue. Today, I’d like to explore the physical steps you can take to manage fatigue, and then next week I’ll look at the emotional and environmental factors.
 
Medical management of fatigue:
  • You need to monitor your fatigue, so that you know if there is something triggering or exacerbating your fatigue. Being aware of your fatigue levels over time will also help you know if any of the measures that you are taking are helping your fatigue.
  • Of course, you should seek help when you are having relapses – see your doctor for any new or worsening symptoms lasting more than 24-48 hours. Your doctor may want to give you a course of Solu-medrol or other medication to shorten the duration of your relapse.
  • Take any medication that your doctor has prescribed. There are some medications that help reduce fatigue directly. Other medications may help secondary fatigue by alleviating symptoms that are interfering with sleep.
Role management:
  • You may have to give up some roles – for instance, it may be too much to continue to coach the soccer team or to actively manage high-pressure projects at work.
  • Part of role management may also involve finding new roles or shifting responsibilities within roles. You may need to find other ways to be involved in your child’s activities or take on different duties at work.
These are just a few things I’ve learned. Check back next week to learn more about emotional and environmental aspects of fatigue. And, share your tips for managing fatigue in the comments section below.
Tags Research, Symptoms      16 Appreciate this
| Reply
Julie

Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.

    30 Comments

  • Duane7   Oct 25, 2013 12:08 PM
    I have taken on the european pattern of living. The afternoon nap has become integral to my survival. By breaking up my day I live better and I'm much more productive.
  • Joanne   Oct 25, 2013 12:23 PM
    10 minute naps can do a lot! Know when you "hit the wall" and take a short nap instead of pushing through..
  • Lisa   Oct 25, 2013 1:15 PM
    Even though try to only rest 20 minutes and even though I set my alarm, my naps turn into sleeping for a couple hours, or I just trudge through the day. Not sure which is worse
  • Aliya   Oct 25, 2013 1:17 PM
    I've been taking medication to keep going throughout the day. Also, light exercise, surprisingly, keeps me awake.
  • Diane   Oct 25, 2013 1:18 PM
    Sleep is critical for me...getting to bed by 10 every night as well as at least a half-hour nap everyday. Exercise is also important for building stamina levels.
  • Bobo   Oct 25, 2013 2:03 PM
    To nap or not, that is my question. If I nap for 10 or 15 minutes, I am groggy for rest of day. If I distract myself with light exercise or a short walk outside, I seem to move past the fatigue, back to alert status. Once in a while I will nap until I awaken on my own, and wonder of wonders, alert status is there. So do whatever works for the individual, on that particular day. MS is truely the whatever affliction-no set description or course of treatments. Cheers.
  • Mary L Hinze-Joyce   Oct 25, 2013 2:08 PM
    You have described my MS fatigue related symptoms to a T. I now have a better way to describe them than before. Thank you, thank you, thank you!
  • Sonda   Oct 25, 2013 2:15 PM
    I take medication for my ms fatigue, but I also have autoimmune hepatitis, so I have liver fatigue as well. I get a full 8-9 hours of sleep, with a sleep aid, and usually lay down on for at least 30 minutes midday. Getting hot or too warm drains me, so I avoid that as much as possible. I try to pace myself throughout the day, especially if I am committed to be out in the evening.
  • James   Oct 25, 2013 2:45 PM
    I take medication for fatigue and it only last about 6 hours and I only get a 30 day supply Without it I can sleep for days at a time And if I nap then my day is done I wont want to get up and once I'm finely awake I don't want to sleep So I'm stuck in limbo land Not to mention my stress level is severe which I been working on for well over a year
  • SLIM13   Oct 25, 2013 2:50 PM
    My PRIMARY SYMPTOMS OF MY MS Is DEBILITATING FATIGUE!! IT IS TERRIBLY DEBILITATING AND ITS VERY HARD TO FUNCTION !!! I describe it as a feeling after CHEMOTHERAPY, which I have had for Breast Cancer back in 1998! My Mom had Breast Cancer and Died of Ovarian Cancer as well as my Aunt! I do have the BRCA1 GENE MUTATION SO I HAVE TO MONITER MY BLOODWORK SEVERAL TIMES A YEAR! MY OTHER DEBILITATING SYMPTON IS CHRANIAL, CHRONIC, THEY CALLTHEM SUICIDE HEADACHES BECAUSE THEY ARE SOOO PAINFUL AND DEBILITATING WHERE YOU CAN NOT FUNCTION! I AM ON SOCIAL SECURITY DISABILITY SINCE 2008 AND IT IS VERY DEPRESSING NOT BEING ABLE W
  • SLIM13   Oct 25, 2013 3:11 PM
    Sorry ,IT POSTED BY ITSELF! I WAS SAYING THAT NOT BEING ABLE TO WORK IS EXTREMELY DEPRESSING FOR ME, BUT I CANNOT COMMIT TO WORKING BECAUSE EACH DAY I FEEL DIFFERENT AND I NEVER KNOW HOW I WILL FEEL!! I AM 45 YEARS OLD NOW AND SINCE THE DIAGNOSIS OF BREAST CANCER AT AGE 29 , WHEN MY MOM WAS DYING OF OVARIAN CANCER IT HAS BEEN FIGHTING BATTLES CONSTANTLY!! BUT, I MUST SAY I AM 15 YEARS OUT SINCE THE BC DIAGNOSIS AND TO THIS DAY I HAVE HAD 17 SURGERIES, INCLUDING THE BIRTH OF MY SON AT AGE 39, WITH ONLY 1 OVARY AND NO OTHER HELP!! MY SON IS 6 YEARS OLD NOW AND HE IS A MIRACLE CHILD!!! I COULD AND MAY WRITE A BOOK ABOUT MY LIFE EXPERIENCES, BECAUSE AS ALL MY DOCS SAY , I HAVE LIVED LIVES FOR AT LEAST 7-13 PEOPLE!!! BUT I AM A SURVIVOR, A WARRIOR, LIKE MY MOM WAS!! SHE BATTLED FOR 10YEARS WITH THE BC AND THEN THE OVARIAN CANCER, WHICH SHE BATTLED LIKE A TRUE FIGHTER/ WARRIOR FOR 4 YEARS!! ANYHOW, I WOULD LOVE TO TELL MY STORY!! MY PHONE # IS 305-849-1296.. AND MY E-MAIL IS emilywallach@gmail.com!! Please get in touch with me!!! Sincerely,
    Slim13
  • Carrie   Oct 25, 2013 3:29 PM
    I suffer not only from M.S. but also Fibromyalgia and seizures and a couple of other issues. So I understand the fatigue. I take it one day at a time and try exercising like walks with my pup and I live for a nap in the afternoons when I can. Not to mention I am usually out cold every night really early.
  • Erica   Oct 25, 2013 3:54 PM
    I also suffer from fatigue. I try to rest as much as possible however it never seems to be enough. I have my parents living with us. US I mean Myself, My husband, our daughters (3), and my parents. My mom is home all day as well as my two oldest daughters. Howerver, my mom likes to tell me I need to suck it up. I should be excersing or be more active because I am to young to be that tired. I wish for one day she could experience the pain, the tiredness, and cognitive fog.
  • Giovanni   Oct 25, 2013 3:54 PM
    Only another patient will understand the meaning of those words, that's a really difficult symptom to manage, it can happen anytime, any given moment, specially in my city, where's always hot and humid!, a real nightmare!
  • Heather   Oct 25, 2013 4:41 PM
    I'm a mom with PPMS and three children. They are young, but old enough to take on some responsibilities. Everyone chipping in is a necessity in our home. I've re-organized our kitchen to facilitate this. I have a paper goods (plates, spoons, bowl, cups) out on our pass through counter. They can get them themselves and dispose of them with no dishes to wash. We have a basket of healthy snacks pre-prepared in our pantry for easy access for little hands. I'm working on organizing other areas of our house to let them be as independent as possible, minimizing the need for my assistance every five minutes. The kids are proud of themselves and get lots of positive reinforcement and I am learning/creating energy conservation strategies that allow me to have greater success throughout the entire day.
  • Heather   Oct 25, 2013 4:43 PM
    ....and I take medication, as well as make time for an afternoon nap in my schedule.
  • Avatar
    bbawake  Oct 25, 2013 4:48 PM
    I have had to learn to say no to so many things.. I have enjoyed different activities, like writing a blog (bbawakeblogs.com) having one visitor a day for 45 min, playing around with Pintrest, excercising.. taking naps once or twice a day. Not worrying about being tired and not worrying about being not as productive seems also to help me.. I just try to 'roll' with it.. or 'lay' with it.. :)
  • Wendy   Oct 25, 2013 11:22 PM
    I need help with this. I have MS and CRPS. I suffer from really chronic fatigue. But, my neurologist doesn't want to treat it. I work full time and I fall asleep right when I get home from work. I also fine myself dozing off at work. I wonder how long it will be before this becomes a problem. I also see a pain management doctor, but that is for my CRPS and it is work comp related, so he is not supposed to talk about my MS. I am thinking I should probably see a new neurologist. My life is wasting away, sleeping all of my life away, expect when I am at work. On weekends, I sleep a lot. I sleep sitting up. I wake up early and fall right back to sleep. I take Rebif for my MS and I am very good about taking my medication. But, I take other medications for my CRPS also. I sure could use some good advice on fatigue.
  • Avatar
    mud909  Oct 25, 2013 11:43 PM
    Fatigue for me is a tricky balancing act. I keep busy enough to stay alert, but trying not to over do it where I become badly fatigued. Naps are just part of my daily routine. I have to move after 12 years from my house this week. The balancing this next week will be on a razors edge.
  • lynn   Oct 26, 2013 12:31 AM
    My daughter was diagnosed with MS in January 2013. Physically you wouldn't know she has it, her lesions are on the part of the brain that controls short term memory and also suffers from fatigue, some of you talk about medications you take. If you don't mind, may I ask what kind of meds you have tried ? My daughter was given Adderall to help her, but stop taking it, said it makes her feel like she is on speed and suppresses her appetite.
  • Brie   Oct 26, 2013 8:12 AM
    Ever since I started acupuncture treatments for fertility, I found that a wonderful side effect was more energy! I will definitely make acupuncture a part of my health maintenance plan! If you decide to try it, please know that it took a couple months! It's not immediate, but worth it in the long run!
  • Vio   Oct 26, 2013 10:40 AM
    The most helpful for me is Tai Chi (taoist.org). It helps to fight fatigue and other symptoms too. I recommend it heartily.
  • April   Oct 26, 2013 12:15 PM
    I've had MS for 13 years, I chase around a 7 year old & my house is always 'busy' with children playing, I have found that juicing 1-2 times a day along side a paleo based diet, yoga & running keeps me from experiencing fatigue. I will say when I was on meds (for 10 years) I felt far worse & experienced all kind of ms symptoms. In response to the accupuncture IT WORKS!!! I had memory problems & fatigue years ago & about 8 sessions (going once a week) solved the problem. to all those who suffer from MS please research eating for your blood type & find a nutritionist that can come up with a personal meal plan for you cut the 'bad dairy, grain & processed food out of your diet, it takes time for your body to reheal itself but I truly believe from my own life experience you can! WATCH THIS VIDEO!!!
    http://www.mnn.com/food/healthy-eating/blogs/recovering-from-multiple-sclerosis-with-nutrition
  • E. Fisher   Oct 26, 2013 1:57 PM
    I have been living with MS for years, and chronic fatigue has been one of the most frustrating symptoms. I am on medication, but I have also made several lifestyle changes that had helped tremendously. I wake up early and go to bed at the same time every day. This helped me figure out how to best plan out my day. Although not always easy, I try to exercise every other day. I recently went on a gluten-free diet, and my afternoon brain fog, has been greatly reduced. I now have many nap-free days. I know there are many other things I can try, but I know that it is best to make changes
    slowly.
  • Avatar
    yogadeb  Oct 26, 2013 5:19 PM
    Just came across this quote and I think its something to keep in mind when trying to balance fatigue with things we feel obligated to do:

    "Brave is never comfortable. Sometimes the bravest thing I do is saying no." ~ @BreneBrown #EWLive13 #livestream
  • Melissa Wilson   Oct 27, 2013 1:47 AM
    Is there any type medicine to help with fatigue that doesnt cause a HORRIBLE dry mouth???
  • Avatar
    Mamadi  Nov 2, 2013 11:18 PM
    I, too have been struggling with the symptoms of my MS including extreme fatigue and brain fog. I have been known to lose my balance and fall or bounce off of walls. I have cut back my hours at work, but refuse to retire onto disability because I love my work and continuing to work helps me keep my life in perspective. I have been fortunate in that my husband, colleagues and supervisors all know that I have MS and have been incredibly supportive of my continued employment. My neurologist has prescribed a medication to help with my focus and fatigue. It's not a total cure, but it helps. As for exercise, my balance is so bad that I have trouble walking, let alone exercising. Any ideas on exercise that can be done holding on to a wall or counter or using a cane?
  • Justina   Nov 5, 2013 1:55 PM
    My mom has MS and I was just diagnosed with lupus and stopping to rest when you have to and knowing that things will likely take longer when you travel (especially across time zones) has become vital for us.
  • Sharon   Jan 15, 2014 10:52 AM
    MS has been life changing not only finding out last year but shortly after I lost my job, I am in my sixties so have retired, I am looking for that job that will understand my special needs. Between the constant fatigue an horrible balance an bouncing off walls it's hard from moment to moment. The only way I have survived is the most wonderful understanding husband that I love an adore. Between God an family I am surviving.
  • Mary Birkett   Oct 2, 2016 2:45 PM
    I often feel ready to give up. Soon I will be a grandparent. How can I take that new role on and have enough energy to enjoy this new baby.