Forget summer struggles; winter is the worst season for my MS
This year's 'snowmageddon,' ice storms, and brutal cold have been a hardship
I’ve noticed a lot of people with multiple sclerosis (MS) report that their disease worsens in the summer months, with fatigue and heat intolerance as common complaints. Not me. I seem to thrive in warmer weather, and I enjoy going outside for the heat.
Instead, I struggle in the winter, and this year’s winter in Kansas City, Missouri, has felt particularly rough. We usually have what we consider milder weather, but these past months have brought us “snowmageddon,” ice storms, and frigid cold.
I have a long list of worsening symptoms that I attribute to my MS and the cold, including lack of energy and motivation, poor sleep, irritable mood, pain, and respiratory illnesses.
My medication — the disease-modifying therapy fingolimod (also known by its brand name Gilenya) — weakens my immune system, according to a 2020 article in Current Opinion in Neurology. I’ve been on the same medication for over five years and haven’t had problems with infections. This year’s been different.
Illness, pain, and worries about falls
I’ve had COVID-19 and two acute respiratory infections this year, requiring three rounds of antibiotics. I hadn’t taken antibiotics in the past five years until recently.
I estimate that I was sick for a total of six weeks in the past three months. I went to work, came home, and lay on the couch all evening until bedtime. I was just exhausted. These illnesses also affected vacations and holiday celebrations, which was frustrating.
I blame some of my lack of energy and motivation on being sick and inactive for an extended period of time. Once I felt better, bad weather arrived. I normally get daily exercise from walking my dogs, but unfortunately, we’ve been cooped up all winter.
I have balance issues because of MS, so the sidewalks must be completely clear of ice and snow before I get out to walk the dogs, as I’m afraid of falling. This caution further delays me in getting out after bad weather, since the snow and ice can take a while before it melts completely.
I have new onset pain in the front of my legs, mainly in the thighs. It occurs only at night, usually starts about 2:30-3:30 a.m., and wakes me up. The pain resolves when I get out of bed. I’m not sure what’s causing it or what type it is, but I wonder if it has something to do with my recent inactivity.
In fact, I’ll attribute my irritable mood to a lack of quality sleep, inability to get outdoors, and reduced hours of sunlight.
I think the winter season is hard for many people with or without MS. February is almost over — hooray! And I’m looking forward to spring, warmer weather, and feeling better.
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, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Bryan
I have very similar experiences. Summer sun and warm weather usually brings about a period of symptom free joy, but winter is a struggle. I have more episodes that last longer and recur more frequently. It is to the point that I am seriously considering a move to a more temperate climate.
Mary
AMEN! Same for me!!! While terribly hot weather bothers me, normal heat makes me feel so much better. The winter cold is brutal to me and makes me cry! Everyone else here is too warm, I have to wear layers and I'm still wayyy cold and it makes my symptoms worse. I am in N. Arkansas, not far from you in MO so I know exactly what you are talking about with this winter we had!
Ivy joy pineda
I ve diagnose with ms 2 years ago untill now i dont really understand but im wlling to listen to some story, may God bless us all and be healed
Joel Shearon
I agree. Winter is worse for me. I was diagnosed 17 years ago and I have PPMS. My challenge is muscle cramps. My muscles do not like to be cold.
I now slept better than I used to because I turned the heat warmer and I now wear a stocking cap to bed.
Lisa
In the winter my MS situation is way way worse. More pain, exhaustion and fear of ice and snow. Finally someone similar to me.
Mark Mander
Thanks Leigh, as I was beginning to think it was only me that had a rougher winter this year. I have had MS for 10 years and it seems now winters get tougher. I get that same pain as you do in the front of my legs everyday. I have yet to figure out a cause other than loose wiring somewhere! This winter I had what I thought was a significant relapse...only to hear those words the no person with MS wants to hear, "You have disease progression and we need to change up your DMT to a stronger drug". So on top of this we had snow twice a week this winter. Not being able to do the snow clean up, as I usually am able to do, brings that extra bit of stress. Asking for help and watching someone else do what I normally like to do, was hard. On the bright side, Spring is around the corner and the snow will go. I have a new normal and am now taking a pill instead of a needle for my DMT. I am inspired by you and the many of us with MS who have learned than when things happen we pick ourselves up and continue to move forward.
Rob M.
In the winter i have the routine of walking indoors
(in my house). The point is keep moving, fight atrophy. For safety's sake, if you are feeling weak. use a walker.
Ellen Lerner
I stopped MS meds about five years ago. I see no difference without them. I have a mild case of MS and it doesn’t seem to make a difference whether cold in winter or hot in summer. Winter is more difficult in general due to wearing heavier and warmer clothing, and I too feel less motivated and less energetic. I am also this March going to be 77. Time flies unfortunately
Alison Ridley
I too hate the winter but love the summer and the heat -I did the Tasmanian university course on ms ad it is accepted it is a 50/50 split so I am not worried and love my carribbean holidays!!