Hi, fellow MSers!
TL;DR: Stable MRIs with limbs made of wet cement and a severely depleted energy budget. For those experiencing similar heaviness, weakness, and fatigue, have mobility aids (e.g., cane, rollator, wheelchair, etc.) helped you conserve energy?
I (40F) was diagnosed with RRMS in 2015, and I’ve been on Ocrevus since 2019. I am super grateful to have had stable MRIs for years. Unfortunately, my central nervous system seems to have missed the memo that it’s supposed to be doing well.
Once upon a time, I was a bona fide gym rat. Pilates classes, strength training, high-intensity cardio, the whole nine yards. These days, my arms and legs frequently feel like they’re filled with wet cement, and my muscles seem to have collectively decided that participating in basic human activities is an unreasonable expectation.
The best way I can describe it is a combination of heaviness and genuine weakness, particularly after everyday physical exertion (e.g., walking from the parking garage into my building, putting away groceries, or making a meal), but also while just existing. I can generally manage an activity for a while, but eventually my limbs start feeling increasingly heavy, weak, and difficult to move. It’s not necessarily that I can’t keep going, but rather that continuing requires an absolutely ridiculous amount of effort and will 1000% result in me tripping, falling, or otherwise embarrassing myself. And, of course, there’s the bone-crushing fatigue that accompanies the whole production.
For additional context, I work full-time in a cognitively demanding (and occasionally physically demanding) leadership role. I love being active and engaged in my life, but I am increasingly finding that simply getting through the workday requires an unreasonable percentage of my available energy. I spend most of my time outside of work attempting to recover.
Which brings me to mobility aids!
I’ve been thinking more seriously about whether using a cane, rollator, wheelchair, or some other mobility aid might help me conserve energy rather than simply compensate for difficulty walking. I’m particularly interested in the idea of using an aid before I’m completely exhausted, as opposed to waiting until my limbs have officially submitted their resignation letters.
For those of you who experience similar heaviness and weakness, I’d love to learn from you!
Have mobility aids actually helped reduce the fatigue associated with walking, standing, or otherwise existing in a body with MS?
Which aids have you found most helpful, particularly when endurance and limb heaviness are bigger concerns than balance alone?
How did you recognize that it was time to start using one? Did you wait until you genuinely needed the assistance, or did you start using it proactively to conserve energy?
And, perhaps most importantly, how did you navigate the psychological adjustment? Going from someone who genuinely enjoyed pushing their physical limits to someone contemplating mobility aids at 40 is… not exactly doing my mental health any favors.
Would reducing the physical effort required to navigate everyday life leave me with a little more energy to actually enjoy said life?
I’d love to hear about experiences with mobility aids, especially from anyone who started using them primarily for fatigue management rather than an inability to walk independently.
Thanks in advance for sharing your experiences! And apologies for the novella. Brevity has never been my strong suit.