I’m just sick and tired. There, I’ve admitted it out loud. Although I thought by saying those words, I might find some relief from my guilt of feeling so darned sick and tired!
Fatigue and MS seem to go hand in hand, like Amos and Andy, only not so entertaining. This past relapse has helped me gain a better understanding of the symptom of fatigue because it has been kicking my butt! I thought today’s blog would be an excellent opportunity for me to discuss my understanding of fatigue in MS and also review some of the literature I’ve read.
When I was first diagnosed with Multiple Sclerosis in 2003, I had a plethora of symptoms, one of which I had little understanding of was why I felt so tired all the time. For a long time, I just chalked the fatigue up to being fat and lazy and living an unhealthy lifestyle with too much stress…that seemed to work for me because little else could explain my lack of drive to get out of bed some days. I also was aware I had bouts of depressive symptoms, so I “clinically” diagnosed myself as having a behavioral defect that kept me from tapping into my well of energy. It seemed easier for me to feel guilty about being defective or lazy than to grasp the notion there may be a physical component to my tiredness. And guilt was far more acceptable than trying to make sense out a neurological explanation and convey this meaningfully to my coworkers and friends.
Most of the literature out there will give you an estimate that 80% of people diagnosed with MS will complain of fatigue and many will present fatigue as their primary symptom that disrupts their daily lives. However, most of the literature is inconclusive as to why this symptom is so predominant and there is little actual research study available to explain its occurrence.
There are many “theories” about why fatigue occurs so frequently in MS, but little conclusion. What IS known is fatigue in MS is very different from the average person’s complaint of feeling tired. MS fatigue tends to carry a pattern of symptomology atypical to what a normal person might feel from simply being “tired”:
*Generally occurs on a daily basis
*May occur early in the morning, even after a restful night's sleep
*Tends to worsen as the day progresses
*Tends to be aggravated by heat and humidity
*Comes on more easily and suddenly
*Is generally more severe than normal fatigue
*Is more likely to interfere with daily responsibilities
MS fatigue is further differentiated in the literature and has been given a fancier name than “lazy” by neurologists. They call it MS lassitude, which clinically means a state of feeling weariness, diminished energy, or listlessness brought on by disease…you can quote me on this one next time you’re trying to explain why you feel so damned tired to your family or friends! Just say you suffer from MS lassitude. It’s sure to impress them.
Because Multiple Sclerosis comes with such a wide array of neurological symptoms, it is very difficult to tease out the basic cause of fatigue in MS and I believe this is why no one can conclusively tell us why we feel so tired…or at least why 80% of those of us with MS are fatigued! There are so many possible causes and researchers tend to focus most of their energies on the area of sleep disorders in MS:
These include painful muscle spasms from spasticity, the need to make frequent trips to the bathroom (called “nocturia”), or involuntary twitching and kicking called “periodic limb movements in sleep,” or PLMS.
Smaller numbers of people with MS have difficulty swallowing during sleep or suffer from sleep apnea—temporary pauses in breathing, often accompanied by gasping, choking, or violent snoring.
MS symptoms and the sleep problems that tangle up with them are many and diverse. Some are directly related to symptoms; some may be caused by the location of MS lesions (areas of damage) within the brain. Others may stem from stress.
Whatever the cause, one thing remains constant…feeling tired! There are several pharmaceutical treatments (i.e., drugs) on the market and I have heard from others with MS, the drugs can be quite effective. Medications like Amantidine and Provigil tend to boost energy levels. And then there are the basic stimulants like Adderal, Cylert, and Ritalin, which I am told have helped some with their fatigue. There are also multiple medications available to treat spasticity, nocturia, and PLMS or Restless Leg Syndrome.
I have a filled bottle of Amantidine in my personal arsenal pharmacy and have never taken one of the pills. Why? Because a little knowledge is a dangerous thing. I researched all the possible side effects from the medication, deciding at the time, I’d rather just feel tired than risk one more drug induced symptom! I settled on a dose of anti-depressant called, Wellbutrin, which seemed like a good choice in treating several symptoms at once. Not only does it seem to “boost” my energy (Itake a higher one time dose in the a.m.) at the beginning of my day, but it also provides some mental clarity…I know this because I tested it via theory of NOT taking it for a period of time. And, those underlying demons of depressive symptoms get a knock on the head, too.
If you choose to treat your fatigue, treatment options are best discussed with your neurologist and tailored to fit your individual needs. Until this last relapse, I felt uncomfortably “comfortable” with my fatigue and was able to make lifestyle changes to accommodate my needs. Now I may have to reevaluate these goals and needs because fatigue is substantially interfering with my life and my guilt factor is resurfacing.
There are several resources out there if you’d like to read online about MS fatigue, the National MS Society being one of them at:
http://www.nationalmssociety.org/Sourcebook-Fatigue.asp
I have to go lie back down now…I’m pooped!
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