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| The Fatigue Monster |
Perhaps the most common symptom of multiple sclerosis is fatigue.
Recently I had bone-deep fatigue and a dull oppressive headache. I ended up sleeping for about 5 hours that afternoon, mostly to get rid of the headache, even though I'd slept a solid 10 good hours the night before. Go figure. Following the nap, I was awake, but my day's plans were shot, and my headache was still a little annoying feather in the back of my head.
I try not to let this get me down, but when it happens day in and day out, it's hard to beat the MS blues. Fortunately, my fatigue periods don't usually stretch beyond 1, maybe 2 days. I have total sympathy for those with fatigue that goes on for days at a stretch. But still, another beautiful spring day has blown past me and I didn't get outside once to enjoy it. And that sucks.
The fatigue itself is like being tired, but you feel it in every single cell and pore. You feel it in your hair follicles. You feel it in the roots of your teeth. Not pain. Just dead weight, like everything is heavy, even the air I'm breathing. Taking a few steps across the room and I think, hmmm, maybe I need to sit down. I break out in a sweat. Everything is hard. Seeing. Listening to two sounds at once. Putting on socks. Answering the phone that is already in your hand. Getting a glass of water so you can take your meds.
Coffee doesn't fix this, by the way. If anything, coffee can increase fatigue because it contributes to dehydration. If you've had an extreme caffeine crash, then this comes close to defining what it feels like to have MS fatigue, though the latter doesn't go away like a caffeine crash does. It persists and there's no way to know what's causing it. At least you know with a caffeine crash that you had too much caffeine and can modulate accordingly. With MS fatigue, there's no warning.
For me, the fatigue is more cognitive or emotional than physical (though it leads to feelings of physical exhaustion). For many, the fatigue is much more in line with muscular issues. Legs and feet drag after a time. I know my feet are dull and sore after a night at the lab, and my calf and toe muscles get rigid and bark back when I'm on my feet for long periods. It's not the shoes, people.
So what exactly is fatigue?
It's not the same as sleepiness or drowsiness. One can be fatigued and not be able to sleep. Fatigue is related to lack of energy, both physical and mental. It can be caused by a number of things, some of them obvious. It's normal to be fatigued after physical activity, stress, poor sleep or even boredom or being sedentary. However, people with chronic illnesses often suffer from fatigue even after eating well, exercising, managing stress well and getting quality sleep.
What causes fatigue in MSers? Lots of theories abound:
1. MS is an autoimmune disorder. That means the immune system is not working normally. In the MSers immune system, there are excessive levels of chemical messengers called cytokines which move constantly between cells. In healthy people, cytokines kick into overdrive when they have a virus, in example. For MSers, the cytokines are like this ALL THE TIME. Perhaps it's the constant activity of cytokines that leads to a general, overall fatigue. Cytokines burn a lot of fuel. Maybe MSers are running out of gas because of them.
2. Parts of the brain affected by MS often rely on other functional parts of the brain to compensate. It's cool to know that our brain has backup systems in place to keep things moving (more or less). But it's like you're on a road trip and your car dies, so you rent a car. Fine, a little hiccup and you are on your way, right? But it's gonna cost you to rent that car. It's the same with the compensatory systems in the nervous system. They can do the work, but the price is that they will expend much more energy to do the same work.
3. Similarly, the reduction in signal transmission in the brain can mean that fatigue is caused by everything slowing down to keep pace with less-than-optimal brain function.
One thing I'd like to put out there is that fatigue for MSers is not caused by diet! This is not a metabolic disorder. So please, if your impulse is to tell an MSer all they need to do is eat Paleo or vegan or whatever, resist the urge. Not only are you giving bad and perhaps dangerous advice (naturopaths absolutely hate it when MSers go on restrictive diets!!!), but you are putting out the suggestion that it's the MSer's fault for eating this or that food. That's not how MS works, peeps.
Some of the best treatments for fatigue, fortunately, are nonpharmacological. I say fortunately because MSers often have to take dozens of pills every single day to stay functional. (I take 22 pills a day, some of them prescription, some of them supplements; I know people who take 3 dozen or more on a schedule.) Keep in mind, yet others are taking regular injections to combat their MS, on top of all the meds.
Regular exercise is helpful, though the challenge is having enough energy and motivation to do so. I have had days where I'm fastwalking and I see a park bench and want to just go and lay down and take a nap. And I mean, the drive is
extremely strong; my eyes are heavy, my muscles are floppy and I feel like I've hit a wall, even though my legs are moving, my heart is pumping and my lungs are breathing a nice meditative sequence.
Figuring out when one's energy is highest during the day is helpful. I know for me that I begin to feel like I'm fully awake and energy between 4 and 5pm. Yes, it takes me ALL DAY to feel alert! I'm a night person, and having this circadian rhythm suits me in my overnight lab job. But during the day, it's really really hard to find the energy necessary to get certain things done when fatigue is lurking right around the corner. Napping is a good way to get a quick recharge, and doing the things that require the most energy during your most energetic time makes for some good personal planning.
Also, saying "no" to requests and saying "yes" to built-in rest periods helps. I usually block out my morning until 9am because I'm a slow riser and it makes no sense to try to get anything productive done before then, so I enjoy my morning and take my time getting ready. Blocking out time for meditation (and naps) and things like walks and yoga and even small meals are good ways to take rest periods seriously.
Staying cool is important for many with MS. Heat sensitivity means that people who live in humid and/or hot climates rarely go outside. The heat wave is a literal phenomenon they feel pass right through their bodies, and it wipes out pretty much all the energy and motivation to do anything. Air conditioning, hydration and the use of cooling devices (spray misters, cooling vests, cooling towelettes) are required in order to be active in these environments.
There are pharmacological helps for fatigue as well, and I do use one: modafinil (or Provigil®). It's a wakefulness medication prescribed to narcoleptics and people with shift-work disorder and circadian rhythm disorders. It's not something a person can usually get off-label unless they also have these conditions, and it's expensive and considered a controlled substance, but it has saved my life. It is not a stimulant, mind you. It simply helps the wakefulness center in your brain work more efficiently. Armodafinil (or Nuvigil®) is its newer counterpart.
Some simpler and less expensive pharmacological approaches include:
Aspirin: Two 325-mg aspirins taken twice a day have been shown to reduce MS fatigue. I'm not sure how this works, but if you can tolerate that much aspirin, it might be useful to go this route. Please check with your doctor first, though.
Amantadine Symmetrel®: This is an antiviral drug that some MSers use to treat fatigue. It has a few side effects but those who use it regularly say it has really helped them to beat their fatigue.
Still others will use stimulants to address their fatigue, such as Adderall and Ritalin. And some antidepressants (especially SSRIs like Prozac) have been shown to help MSers battle fatigue. Again, these are all better left as part of a discussion between you and your MS team (neuro and pharmacist and naturopath and therapist and PCP). More drugs mean more chance for side effects. And it's worth noting a couple of things when it comes to pharmacology and MS:
1. Often the medications you are taking for other issues can interact together or individually lead to problems with fatigue. Definitely talk with both your doctor and your pharmacist about ways to change up medicines if they, indeed, can be the likely source of your fatigue.
2. Abusing legal or illegal drugs, alcohol, energy drinks/supplements and even caffeine can also lead to terrible fatigue. Don't self medicate and do try to avoid developing these habits as they can only make your symptoms and your condition worse.
Supplements can also boost an MSer's energy levels. These can be anything from vitamins to herbs to nutritional supplements, and it is up to the MSer to work out what will benefit them most. Like with any pharmaceutical medication, supplements can have their own side effects and risks. I do a ton of research before starting a new supplement and also talk with my naturopath from time to time. Some primary care physicians and MS neuros are hip to supplements; some aren't. A good book to cross-reference if you are thinking about going the supplement route is
Prescription for Nutritional Healing by Phyllis A. Balch, CNC. Here are a baker's dozen* to look into:
1. Coenzyme Q10 (with or without NADH)
2. Vitamin B12 (or even a good B-complex vitamin)
3. Acetyl-L-Carnitine
4. Magnesium
5. Gingko Biloba
6. Eleuthero
7. Astralagus Root
8. Essential Fatty Acids
9. Iron and Vitamin C on an empty stomach
10. Vitamin D
11. Potassium gluconate
12. Zinc
13. Alpha Lipoic Acid
*These products has not been evaluated by the FDA and are not intended to diagnose, treat, cure, or prevent any disease.
So there's the scoop on fatigue. It's real and it can wreak havoc on a person's otherwise busy, demanding life. Remember, MSers are generally younger, so having to deal with fatigue while parenting and/working to pay the bills and/or caring for elderly family members and/or giving time and skills to the community can make it really hard to get things done. If you have a friend with MS and they have to back out of commitments because of fatigue, try not to judge them. They are just trying to take care of themselves.
Amy has lived with MS for more than twenty years and is now bringing that experience, as well as her great sense of humor and sharp mind, to a new nonproft, MS Softserve. MS Softserve is a customizable, interactive online learning environment for people trying to make sense of their MS in a way that's empowering to the user. MS Software received the first grant ever awarded by the National MS Society. It makes sense that Amy should want to build MS Softserve, as she works as a consultant and guest speaker to help healthcare professionals better understand the patient experience and to be a stronger link in the patient-to-doctor communications chain that is health literacy. Amy has worked tirelessly with pharmaceutical companies, physician organizations, nurse educators to find ways to improve the lives of patients with MS. She's also the lively and likeable host of the radio program, MSLOL (Multiple Sclerosis Life of Learning) Radio and companion to the Two MS Chicks Radio program (now known as MS Chick and Ms. Diagnosed).
Stuart's work appeals to the journalist in me! He runs the highly informative radio program, MS Views & News, where he interviews all kinds of doctors and experts about specific issues related to MS, with Deanna Kirkpatrick as his sidekick. Stu's is a major nonprofit multimedia effort, which includes the MSBlog, a major website hub, a weekly newsletter and a YouTube page. Stuart was diagnosed with MS fifteen years ago, his efforts to develop these useful, informative educational media programs came after he was unable to locate the kinds of resources he needed on the internet. He also serves as a patient advocate for the pharmaceutical company, Biogen Idec, which produces several of the major DMTs for MS: Tysabri, Avonex, Rituxan and Tecfidera. Perhaps the greatest favor he does for the MS community is to ask the hard questions and to challenge or expose "snake oil salesmen" as well as those who would spread misinformation and build false hopes in the millions of patients with MS.
