I’m Tired Again, and I’m Sure You’ve Been There
Are you tired? Really tired? Me, too. Most of us with multiple sclerosis are.
How many is most? A small new study of 44 people with one of the progressive forms of MS found that the answer is a little over 86%. (I’m surprised the number isn’t higher.) They used words like “tired,” “exhausted,” “wiped out,” and having “little or no energy” to describe their fatigue.
Half of patients reported feeling tired all the time. More than 90% reported being fatigued at least once a day. For slightly more than 38% of the small group surveyed, fatigue was the most troubling MS symptom.
The second and third most frequently mentioned symptoms were trouble walking and muscle weakness. I’d list the same two symptoms after fatigue, in the same order. I have no doubt they are the reason for some of the fatigue I feel every day, some days more and some days less.
Fatigue can lead to isolation
Fatigue definitely has put a crimp in social activities for the people in this study. Some described themselves as “homebodies,” too tired to socialize much. They also reported depression and anxiety, which they attributed to their fatigue.
The mean age of those surveyed is 52.5, they’ve been diagnosed with MS for about 15 years, and nearly 80% are unemployed and/or receiving disability. I suspect that younger and less disabled people with MS would report a much lower degree of fatigue impact.
For the most part, I think I do pretty well for a 71-year-old who’s lived with MS for about 40 years. I’m much less disabled than those in this survey, but even so, there are plenty of times when I’m too tired to go out and socialize or invite friends over. I’m ready to hit the sack by 9 or 10 o’clock most nights, and some days, I’ve been too tired to write this column. But I think exercise in the gym and swimming have helped me stay less tired than I might be otherwise. Cutting back on this exercise due to COVID-19 restrictions has proven to me that I’m right about needing to stay in shape.
What can you do about MS fatigue?
Professor Gavin Giovannoni, who writes at the Barts-MS Blog, suggests that we need to understand the physiology of MS to create a plan to deal with our fatigue. Giovannoni noted that, “MS fatigue relates to (1) active inflammation and (2) the consequences of the damage that inflammation causes. If we acknowledge this then we are half-way towards treating and preventing MS-related fatigue, i.e. treating MS early (before too much damage occurs) and effectively (NEDA [no evidence of disease activity] and beyond).”
He said this is why people treated with highly effective disease-modifying therapies (DMTs), such as Ocrevus (ocrelizumab) and Lemtrada (alemtuzumab), regularly report improvements in their fatigue and brain fog. That’s been the case with me.
But beating fatigue is much more complicated than just being treated with a DMT, Giovannoni said. It “needs a systematic approach to be treated and managed correctly.”
He said to “be careful, or at least wary when your neurologist simply wants to reach for the prescription pad to get you out of the consultation room as quickly as possible. Like other MS-related problems, an holistic and systematic approach is needed to manage and treat MS-related fatigue correctly.”
Diet, exercise, and importantly, the amount of sleep you get all play a role in handling fatigue. To some extent, all of these are in your control.
What’s been your experience with fatigue? If you’re not too tired right now, drop a comment below and let us know.
You’re invited to visit my personal blog a www.themswire.com.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Kathleen Fulghum
Cannot stress enough the importance of exercise with MS. What a difference since I've not had my 2 or 3 swims a week. Stretching exercise and Theraband work help, but in the pool I don't have to fight gravity. Thank you, Ed Tobias, for your most informative blogs.
Ed Tobias
Thank YOU, Kathleen, for taking the time to comment. I absolutely agree about exercise.But, I prefer the gym to the pool and COVID has removed my willingness to use a gym, even the private one in my community, until who knows when.
I guess I need to order some Therabands for myself. It'll be better than nothing.
Ed
Laura Spoor
On days, off days - can't see a pattern! What I eat, how much I sleep, how much I exercise - nothing is clear! Some days are just crummy; other days are fine; but most days are in between. When the fatigue hits, there's just not much you can do but rest!
Ed Tobias
Laura,
Over many years the one constant is that exercise helps lessen my fatigue. I think, but I'm not sure, that my Lemtrada treatments have also helped. But, you're right There are on and off days, no matter what.
Ed
Louise
CBD has made an astonishing difference to my fatigue level. It also got rid of my brain fog and has given me more stamina. My spasms are probably 90% improved.
(I’ve been in a wheelchair for 15 years).
Ed Tobias
Hi Louise,
Thanks for your comments. I've tried CBD and also the combination of CBD and THC and have found it relaxes me, but it doesn't help my fatigue. Since it isn't covered by insurance its benefits weren't worth its expense.
Ed
John Soper
Each day is different, outside events can create stress, ie the partner, the kids, your work, your car and my MS etc etc.
You have MS... get on with it and enjoy it.
Life is very short, make the most of it.
Regards
John Soper
Ed Tobias
Agreed, John.
Ed
Zoe
Hi Ed,
Thanks for sharing this one!
Im now 27 years and got diagnosed at the age of 18
Fatigue is also the biggest symptom for me.
But diet, exercise and enough sleep are such great, positive influences to minimalize - as much as in your power -the amount of fatigue a day.
Sometimes i get unmotivated beacause of the amount of fatigue there is in every day life. Columns like these help me to get motivated again! Right now i just got dressed for a run ;)
Wishing you the best and keep on making the most/best out of your life!
Kind regards,
Zoe from the Netherlands
Ed Tobias
Hi Zoe,
Thanks very much for your comments. My philosophy is that instead of hiding from the storm it's better to learn to dance in the rain. It's one of the things that's kept me going. (My two grand-kids also help)!
By the way, my wife and I love the Netherlands. Although we've only been to Amsterdam, we loved the city and we thought the people were some of the most friendly we've found anywhere that we've traveled. We hope we can return someday to see more of your country.
I hope you enjoyed your run.
Ed
KEMI OKORIE
Hi Zoe,
Thanks for sharing. My daughter, 20+, recently got diagnosed and chronic fatigue seems to be a major issue with her. Experiences electric shocks when on her feet (tried to encourage her to wash up her dishes ), hypokalaemia and little or no appetite. I stumbled on this website while looking for a suitable diet for her.
Please share some of the struggles you experienced as a young person after being diagnosed and what helped.
Thanks.
Best wishes,
Frances mum
Zoe
Hello mum of Frances,
My biggest struggle, mostly around 20 - 24 years, was to figure out how to change my daily activities. With this 'new' life. And by that i mean, not having tons of energy a day anymore. And not having the freedom anymore of not having to think about what i can and cant do on a daily basis.
That was hard. What i really did, just experimenting! What would happen if i just go for a walk when im tired? What if i try to make a simple meal when im tired? Things like that. Trying to figure out what works for me and what doesn't
With diet i really mean, a way of living. Drinking water, eating vegetables at (almost) every meal, fruits, small meals instead of huge portions. eating fish, and less meat. Its something i created over the last 5 years to build a healthy basis and try to get energy out of this food.
Maybe tomatojuice helps for your daughter. theres a lot of kalium in it!
Best wishes,
Zoe
zoe
Hi kemi okorie,
Not sure if the comment i replyd a few minutes ago came through.
What i wanted to say to you and your daughter:
My biggest struggle was to figure out how to create a new way of living. With that i mean, with the new amount of energy i had in a day. I was used to have tons of energy and doing all types of activities. that was hard. but i just tried and tried! One day i tried to walk even when tired, the other day i tried cooking even when tired. that kind of simple daily things. it helped me to figure out what works and what doesnt.
Maybe tomatojuice helps for your daughter. it contains a lot of kalium.
About the diet. I would say its not a diet, but a new way of eating. like drinking water, eating a lot of vegetables and fresh meals. It helps me to create an healthy basis!
Best wishes,
Zoe
Zoe
Hi Ed,
Instead of hiding from the storm, learn to dance in the rain. That's such an uplifiting sentence! How fun to have your grand-kids to also help you pursue in that.
Im glad you and your wife have experienced the Netherlands in such a good way! Maybe if you ever have the opportunity to come back again, go to Zeeland! Thats in the south of the country. divided in a couple of islands. There is a lot of beach, nature and dunes.
Kind regards,
Zoe
Ed Tobias
Zoe,
Beach and dunes. That's like where I live, right on the Atlantic ocean in Maryland. With beauty like the ocean it's easy to be uplifted.
Rest regards,
Ed
Leanne Broughton
I am tired but my fatigue was worse the first 10 years after diagnosis. Am I just used to it or is it because I have less responsilities. Early in my MS I worked near full time, had 2 school aged children, a house and a dog, oh and a husband to take care of. Now I am 60 yrs old, retired, kids grown. Thank goodness I no longer have all those jobs. I sleep in, I exercise and dont eat junk food. If only I could walk better. We cant have everything.
Ed Tobias
Hi Leanne,
No job, no kids in the house, no husband sleeping in, exercising and not eating junk. Seems as if you have at least half a dozen reasons for feeling less tired!
Ed
Monique
I am 58 years old and I had always took a lot of pride in being able to accomplish a lot in a short period of time. I was diagnosed with MS 1.5 years ago. In the last 3 months I have experienced fatigue on a regular basis. When I exercise afterwards I’m so wiped out that I don’t do it again for another week. Today I cleaned my furniture. Laid down for 3 hours. Took the dog for a 2 mile walk. Now at 9pm I’m in bed. I can not finish the dishes. I have no energy to get my clothes ready for work tomorrow morning. My next ocrevus treatment is on the 15th of this month. I’m hoping afterwards my energy levels will increase. I get these treatments every 6 months
Ed Tobias
Hi Monique,
I hope your Ocrevus treatments help. A lot of people report good results with that DMT.
Fatigue is certainly something that many people with MS live with. There are some meds that can help treat the symptom and I think that a multi-vitamin has also helped me. But, wow. If you can go for a two mile walk you're miles ahead of me, even if it wipes you out. :-).
Ed
Julie DelMarcelle
Thanks to all of you for your experiences. My husband was diagnosed with MS 6 years ago at age 58, though he has had symptoms for over 10 years. Chronic fatigue and walking difficulty, affect him all of the time. He recently started taking Dalfamprodine to improve his walking, and is helps immensely! He does find that it keeps him awake, so he doesn’t take the second dose in the evening. He has been on Ocrevus for the past 4 years, and unfortunately, he is not feeling the decreased symptoms after infusion, that he was getting. His most major challenges are vision problems with one eye crossing to the middle, chronic fatigue, right side weakness and walking difficulties. He goes to the gym 3-4 times a week, and has found High Intensity Interval Training to be very helpful. His sister who also has MS, is an avid runner. Exercise definitely makes a difference and helps keep his spirits up. He also stopped gluten, and eats organic everything, and very little processed foods. Keep on keeping on, everyone!
Ed Tobias
Hi Julie,
Thanks for shining all of that. It sounds like both your husband and his sister believe that life isn't about hiding from the storm, it's about learning to dance in the rain. I hope they both continue to do well.
Ed