What

Crystal Ball – What’s Today Going to be Like?

I am normally left wondering what is coming next — sometimes it’s the big picture of life and the direction of this world, but often it can be on a microscale where I wonder how my day is going to go with my MS.  There are always surprises in store on the large and small scale and wouldn’t it be nice if we had a crystal ball and a way to forecast some things? I would especially like to know whether it’s going to be a good day or not for me and my fatigue.

Researchers for Highmark Blue Cross Blue Shield (Pennsylvania) recently announced they completed a pilot program for people with Multiple Sclerosis to see if there might be a way to predict what kind of day they might actually have.  The study was looking at how fatigue creates a waste in productivity and decrease in the quality of life, and I’m pretty sure also how much it costs to manage. The pilot program had 100 people with MS monitor their daily activities and the events around them, through the use of a sensor worn on the body and also writing a in a daily journal.

In a press release from  Highmark, “We want to see if those symptoms are actually not as unpredictable as once thought,” said Highmark vice president Paul Puopolo, who oversees the company’s Business Innovation and Development department that launched the pilot. “Highmark is the only organization approaching fatigue from a lifestyle-based process. This is a program that could change lives. It would be a forecast, not a cure, and it wouldn’t be a 100 percent sure thing. But if it works, it could give those with MS just a little more control of their lives and their disease.”

Fatigue is a common complaint of those with MS. People with MS often experience a sudden onset of feeling overwhelmingly tired and/or having severe muscle fatigue. This can be debilitating, making it difficult for those with MS to manage everyday life in terms of work, family and social activities.

“Any indicators or predictors that emerge from the pilot could help people with MS forecast when they could be affected by their symptoms,” said Puopolo. “It would give them the chance to proactively plan around potential fatigue spells, have a higher degree of control and plan their most important activities for what would be anticipated to be successful days.”

It should be interesting to see if they find a pattern with fatigue and daily activities and environmental factors.  Especially if it backs up what I already know from my personal experience.  The following things accelerate my fatigue: lack of sleep, exposure to heat (any kind), stress, mowing the lawn,  and more often than not, nothing.  It would be great to know if there is a pattern to my fatigue and if there were ways to slow its effects.  I haven’t needed a monitor or diary to tell me that I am fatigued and I have been paying attention, trying to pick out a pattern on my own.

I would love to know when I am going to have a “successful day” so I can make the most of it – usually I don’t know until the end of the day how my fatigue has influenced my activities, and that is only if I find I am still standing. Success for me is often measured just by getting to the end of the day without a prolonged rest.  If this study shows merit, perhaps they will share the crystal ball with the rest of us.

Be well,

Laura

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Comments

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  • Jessica Petroff
    4 years ago

    Sharon B,

    I also have issues with hypersensitivity as well, so you’re not alone. Some days are worse than others. I hate to shop, but now, I have found that I have to try everything on to make sure it won’t drive me crazy. I have also found a line of nice cotton shirts/t-shirts at Kohl’s that do not have tags (Sanoma).

    I’m interested in seeing how much further they’ll go with this research with the fatigue. I’m with you Laura, sometimes there is no prediction or no “set off” to my fatigue, but have definite triggers as well. Not sleeping well, heat, stress and overstimulation (e.g. loud noises, too many conversations going on at time, florescent lighting). Let’s just say parties aren’t my thing anymore and it’s very rare that I can go to a restaurant.

    All be well….good article!

    Jessica

  • Sharon B
    4 years ago

    There is always talk about fatigue, but I have a question about hypersensitivity. I have times when I am overly sensitive to almost everything in my daily environment. Lights, loud noises, tags in clothes and even my wedding rings and earrings that I wear all the time. I feel like I want to jump out of my skin at times. I have cut off tags in clothes on days like this. Does anyone else have this problem? Thank you in advance for any information you can provide.

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