Sick and Tired of Being Sick and Tired: MS Fatigue

If I had a dollar for every time someone told me to "just get more rest," I'd finally be able to afford the nap I actually need. Spoiler: I'd still wake up and feel like I've ran a marathon in my sleep.

MS fatigue isn't normal tiredness. It's the kind of exhaustion that laughs at caffeine, sneers at motivation, and makes you question if gravity somehow got heavier overnight. It's waking up already drained, dragging yourself through the day on fumes, and wondering if "napping" can be considered a full-time job.

And for the record: when someone pipes up with "Oh, I have trouble sleeping too," I tend to want to rage. No. No Brenda, NO — this isn't the same. This isn't a bad night's sleep or being wiped out after a long shift. This is your brain and nervous system running like a cracked-out speedster, burning through battery power while everyone else is still sipping their first coffee. I have days where I wake up, hop in the shower and just washing my hair can end with me with crawling back into bed before passing out on the shower floor.

With Multiple Sclerosis, damage to the brain and spinal cord means nerve signals have to find detours, work twice as hard, or keep hitting roadblocks (Read: MS Society UK - Causes of Fatigue). The result: your nervous system is basically forced to run on "high battery drain" mode — every thought, every step, every blink takes more energy than it should. According to researchers, this includes issues like axonal demyelination which triggers conduction failures and inefficiencies in signal transmission (Read: PubMed - Fatigue in multiple sclerosis).

In plain English: your body is burning through energy faster than a crack-head blows through a dime bag — and you have no choice in the matter.

Why It's Different

With Multiple Sclerosis, damage (scar tissue/lesions) on the brain and spinal cord means nerve signals have to find detours, work twice as hard, or keep hitting roadblocks (Read: MS Society UK - Causes of Fatigue). The result: your nervous system is basically forced to run on "high battery drain" mode — every thought, every step, every blink takes more energy than it should. 

According to researchers, this includes issues like axonal demyelination which triggers conduction failures and inefficiencies in signal transmission (Read: PubMed - Fatigue in multiple sclerosis).

In plain English: your body is burning through energy faster than a crack-head blows through a dime bag — and you have no choice in the matter.

Testing Plot Twists

My primary care doc and psych thought that going through a cognitive test to see if there was anything else going on, besides the MS that could have been causing some of the issues I was having. What a treat that test was.

Apparently having one chronic condition wasn't enough and I caught the ADHD diagnosis out of that test. Which turned out to be a good thing for me, more on that later.

My primary doc sent to have pharmacogenetic testing done since I'm allergic to so many meds. That test can be a game changer, especially for people like us with MS that are trying to treat symptoms with various medications. I learned that a few medications I'd been taking for years did absolutely nothing because I metabolize them too fast for them to work. 

It's worth asking your doctor about having that test done so you can be put on meds that will actually work for you. The only downside is, it's an expensive test if you don't have decent insurance. But well worth it to get medications that are a better fit for your body. 

The Medication Carousel

For the fatigue, at first I asked for and  tried Modafinil (Provigil). It's the supposed magic pill for fatigue. And I'll admit, it did something — my brain felt sharper, clearer even. I could think better. But my body? Still dragging like a Windows 95 update on dial-up.

Due to my ADHD diagnosis, my psych recommended switching the Modafinil to Adderall (generic: amphetamine).  We started with a slow-release version that gave me a solid morning almost human functionality until mid-day, then crash-and-burn city. Eventually, I got a second prescription for quick-release tablets to supplement on the rough days to take as needed.

Is it a cure? Nope. Does it help? Yeah, for me it does. Everyone's different, but it at least takes the edge off the constant "I need a nap" energy.

So... What Actually Works?

Here's what I've found helps somewhat — none of it wipes it out completely, but taking control in these areas helps the fatigue monster shriek a little quieter. 

Pacing

You have to pace yourself. Seriously. MS fatigue punishes anyone who thinks they can "push through." It's like playing chicken with your own body, and spoiler: your body always wins. Pacing means learning to do things in chunks — breaking tasks into smaller, manageable pieces and spacing them out through the day or even across multiple days.

I use what I call the "one-and-done" rule: if I do one major thing (laundry, errands, phone calls), I'm done pretending to be productive. Planning your day around energy instead of time helps you survive without hitting that brick wall of exhaustion that takes a full day to recover from. The sooner you accept that your energy budget resets slower than your phone battery, the better you'll function long-term.

Resting

Rest is not laziness — it's damage control. With MS, your body isn't just tired; it's working overtime to send signals through damaged wiring. Every simple movement or thought takes more effort because those signals have to reroute around areas of demyelination. That constant inefficiency burns through energy fast, which is why "just resting" can make the difference between functioning and face-planting.

Real rest means stopping before you crash, not after. That's the hardest part. I've learned to take short breaks between tasks — lie down for 20 minutes, close my eyes, zone out with quiet music, or do absolutely nothing. It helps prevent the full-body shutdown later. And yes, sometimes naps happen — planned or not. If your body demands it, listen. You can't out-stubborn neurological fatigue even though we all know you're going to try to anyway.

Setting Expectations (with Yourself)

You're chronically ill. It's not going to get fixed. That's a gut punch, but it's the truth. You have to accept that the version of you before MS is gone. Mourn it, miss it, whatever you need — then adjust.

It's okay to be slower, to cancel plans, to not get everything done. That's not weakness; it's realism. The biggest mental shift for me was realizing that life isn't about bouncing back — it's about adapting. You're broken, and that's okay. You can still live well, just differently. The moment you stop comparing yourself to your pre-MS self is the moment things start feeling a little lighter, even if your body isn't.

Setting Expectations (with Others)

This one takes guts and isn't easy for most. People don't understand fatigue, especially invisible fatigue. They'll look at you and say, "You don't look tired," as if that means you're not. Most of the time they go right to the "Oh I slept like crap last night too" as if it's the same thing. Setting expectations with family, friends, or your boss means teaching them that MS fatigue isn't negotiable — it's not a bad attitude, it's biology.

Be upfront: explain that some days you'll have energy and others you won't. Tell them flaking out isn't a choice; it's survival. If they care, they'll get it. If they don't, well… that's useful information too. I've found honesty works better than pretending to be fine until you crash in a puddle of regret and sweat.

Medication

There's no miracle pill for MS fatigue — and if someone claims there is, they're probably trying to sell you vitamins. For most of us, medication is about finding a balance between mental alertness and physical energy.

Common options include Modafinil (Provigil) or Armodafinil (Nuvigil) for wakefulness, or stimulants like Adderall or Ritalin, which can help with focus and energy. Results vary wildly. Some people swear by them; others get little to no benefit or can't tolerate the side effects. It's trial, error, and more trial.

And since everyone's biochemistry is unique, what works for one person might do nothing for another. It's the ultimate "your mileage may vary" scenario. For me, Modafinil helped my brain fog but not my body. Adderall helped me move but sometimes made me crash harder later. It's about trade-offs — finding the setup that lets you live your life with fewer "why did I even get out of bed?" days.

Exercise

Yeah, I know — "exercise helps" is the last thing anyone with MS fatigue wants to hear. But here's the thing: done right, it actually does. We're not talking about training for a marathon or crushing gym goals — we're talking about small, consistent movement that keeps your body from seizing up and your energy from flat-lining completely.

Regular light exercise — things like stretching, short walks, gentle yoga, or even basic resistance bands — can improve endurance over time and help your body use oxygen more efficiently. The key word is moderation. Overdo it, and you'll crash hard. Under-do it, and you stiffen up like the Tin Man in winter.

For me, it's about picking days and times when I usually have enough energy to handle it. Ten minutes of movement is still progress. You don't have to sweat buckets to benefit — you just have to keep things from rusting shut. 

Nutrition / Diet

You don't have to eat like a wellness influencer, but what you eat does affect how you feel. For me, smaller, balanced meals keep my blood sugar steady, which helps avoid those post-meal crashes that make you want to face-plant into your plate.

Staying hydrated (even though it won't cure fatigue) and avoiding super heavy, salty, or sugary meals helps too. Think "fuel efficiency," not "strict diet."

Stop eating like a dumpster raccoon and make some healther choices. There are a number of great recipe books and websites with recipes designed for and by people with MS.

Sleep Quality

Sleep problems are the silent co-conspirator of fatigue. Even if you're technically "asleep," crappy sleep architecture can leave you wiped. MS itself messes with normal sleep cycles, and medications can make it worse.

Setting a consistent sleep routine, avoiding screens before bed (I know, boo). And if you're having issues at night (spaciticity, disco legs, cramping, overactive bladder, etc) mention them to your doctor and maybe those issue could be addressed and improve your ability to sleep decently. 

Mental Load Management

Fatigue isn't just physical. Mental strain drains the tank too. I've learned to schedule high-focus tasks when I'm freshest (usually early mornings), then shift to easier, low-demand stuff later in the day.

Even decision-making burns energy — so make fewer choices where you can. Pre-plan meals, automate tasks, or just say "no" more often. Delegation is self-care, not laziness.

Assistive Tools & Technology

Sometimes the smartest move is letting tech do the heavy lifting. Voice-to-text, smart home controls, ergonomic tools, grabbers, or even just sitting to do chores — all small things that save you energy for what actually matters. Call it outsmarting your limitations.

Looking Ahead

Clinical trials for MS fatigue are always in motion, and a few are showing real promise. One worth noting is a low-dose Ketamine trial that found participants experienced less fatigue for several weeks after a single infusion. Another larger phase 2 study, the INKLING-MS trial, is now underway to confirm those results.

If you like keeping tabs on current research, Gregory MS is an excellent site that tracks MS-related clinical trials and research from around the world. You can also follow them on Bluesky at gregory-ms.com for ongoing updates about studies like these and other emerging fatigue treatments.

Final Thoughts

MS fatigue isn't weakness, and it sure as hell isn't something you can "push through." It's your nervous system doing the absolute most just to keep the lights on. Every movement, thought, and blink costs energy you don't have to spare.

Doing your best might just mean getting your pants on for the day — and that's fine. Unless you have company coming over. Then just cancel those plans now. You know you want to, and honestly, you probably need to.

The point is: stop measuring your worth by what you used to do. Fatigue management isn't about hustling harder — it's about surviving smarter. Some days you'll feel semi-functional, and other days you'll be a human houseplant. Either way, you're doing just fine.