Symptom Management

I have multiple sclerosis and I am a MS-certified nurse. This puts me in a unique position to be able to share my experiences from both sides of an MS diagnosis. In fact, it was my diagnosis that led me to make the decision to use my nurse training to help others with MS.
 
A couple of years after I received my nursing degree, I was working in an inner city clinic in Houston. I worked 60 hours a week, often with no air conditioning. I was also a musician on the worship team of our church, so many hours were taken up with rehearsal and leading worship. Out of nowhere, I had a major health event that left me essentially bedridden for about three months. Looking back, I now believe it was the first manifestation of my MS.
 
I recovered, more or less completely, from that incident. But during the next 19 years, I had similar unexplained episodes: left eye pain and dimmed vision; falls and balance problems; incredible fatigue; heat sensitivity and more. My symptoms would last for weeks or even months at a time. Finally, in 1994, I sought help from my ophthalmologist. It looked like I had optic neuritis, so he sent me to the Brigham and Women's Hospital in Boston, where I was finally diagnosed with MS.
 
My diagnosis came just months after the first disease-modifying therapy became available. Because it appeared that I had been living with MS for nearly two decades and was still walking unaided, it was assumed that I had a more benign form of the condition and did not need a DMT. I have since learned that was not the case and disease-modifying therapy is a must! Fatigue was the main symptom that dogged me for the next few years, but no available medications seemed to alleviate it much. In fact, the medications interfered with my sleep, which only added to the fatigue.
 
We all know what it is like to take on an intense project around the house and be so exhausted that you fall into bed and sleep soundly. MS fatigue is nothing like that! It can hit suddenly and is more intense than anything I have ever experienced as a result of hard work or long hours. Worst of all, it is often not relieved by resting. I tell my husband that the “starch has gone out of my spine” when it becomes hard to hold myself upright. Or I will say the fatigue is “knuckle dragging” – so intense it is hard to stay standing or even move. MS fatigue, especially when piled atop normal fatigue, can be extremely disabling.
 
For me, intense fatigue often comes with mental fogginess and difficulty finding words. My balance becomes shaky, and my vision is no longer crisp or bright. The bladder doesn’t empty as easily or fully as it normally does. I often wake during the night with hip pain telling me that spasticity is once again a problem.
 
This kind of intense fatigue can often make us think we are having a relapse. That is not always the case. I personally have found that I am often dehydrated or overheated when this happens, and rehydrating, especially with very cold beverages (with chopped ice, or in a slushy consistency) is often immediately helpful. Likewise, if it has an overheating component, I will put on a cooling vest or collar and that can minimize the intensity of both the fatigue and mental fogginess, and it will allow me to continue what I am doing.
 
What I have found to be helpful to combat fatigue:
 
• Cue your significant other or a family member to intervene if they see you slipping into this intense fatigue. Remember that mental fog often accompanies fatigue and we may not recognize it in the moment. Another person’s observations can cue us to cool off, take a drink, or stop a task that is not essential.
 
• Try rest, cooling, and hydration to manage fatigue. If that doesn’t help, ask your neurologist if there is a medication that would be effective in fighting your fatigue.
 
• Remember, some symptom-management drugs can contribute to fatigue and mental fog, such as medications for spasticity, nerve pain, and bladder control. Current medicines to manage fatigue have the potential to mess with our sleep patterns which may lead you to ask your doctor for something to help you sleep. Be very cautious of falling into a vicious cycle of medications designed to keep you awake and alert during the day and sleep at night.
 
• When I was working full time, I took medication for fatigue only on days when a heavy load was scheduled at work. I did not take it on days when I was in the office or meetings most of the day. Also, I did not take it on my days off, as you can build up a tolerance to many of these medications, and over time, they can become less effective.
 
• If you frequently have trouble making it through work, it may be time to disclose that you have MS and might need some energy conservation measures as accommodations. For me, some of those accommodations were grouping my patient load in a more densely populated area. This cut my driving time between patients, and my driving mileage went from 90 miles a day down to 10. It also meant working more in the office with A/C than in homes with none.
 
• Posture is important! I honestly feel better when I force myself to sit upright. I breathe better and feel more alert.
 
• Exercising, even when I am fatigued, is therapeutic. Getting the body moving and the mind active can greatly reduce the effect of fatigue for me.
 
MS Focus: The Multiple Sclerosis Foundation helped me to turn my life around and take control of my MS with the MS Focus Cruise for a Cause®. The high quality of education there was eye-opening for me, and it empowered me to learn as much as I could about how to manage MS. That first cruise got me energized to give back. I found the Multiple Sclerosis Certified Nurse program and became one of these nurses in 2003. My world has expanded, health has improved, and life has greater meaning as this journey continues. I’m happy to share my experiences, from both sides now, and hope these tips will be useful for you in managing your MS fatigue.