MS Lassitude Fatigue

Anyone with MS deals with others who think they know what is going on and try to relate. These people mean well but it can be a real struggle for the one with MS. When it comes to MS fatigue, comments like "I get really tired too" can be discouraging. The other day I read a blog post about fatigue and it made me think of doing a poem of sorts about the differences of 'being tired' vs MS fatigue. I'll have to save that for another day. Today however I would like to share the National MS Society's definition of lassitude fatigue. This is different from what I might call 'secondary fatigue' which would be fatigue brought on for a reason (like maybe your legs are hurting really bad during the night and you are unable to get sleep; as a result you are fatigued the next day).

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Lassitude fatigue:

• 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 easily and suddenly
• Is generally more severe than normal fatigue
• Is more likely to interfere with daily responsibilities

MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment.

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Some days I may start off pretty good but then all the sudden my body starts buzzing or vibrating inside and I know fatigue will hit within the half hour or so and hit HARD.  Like thousands of pounds of bricks are attached to my body and I am sinking into the floor. I recently heard a man describe it like this. Everyone experiences 'fatigue' whether they have MS or not. Someone without MS will relate your MS fatigue to the fatigue THEY have but that is like comparing an atomic bomb with a firecracker. Yeah, they both explode, however there is a huge difference in the impact.

I'll return some day soon with a little poem.

"Secondary" MS Symptoms

According to the National MS Society, a 'secondary symptom' is: "the complications that can arise as a result of the primary symptoms." This recent "pseudo exacerbation" has given me the most 'secondary' symptoms to date.

A major primary symptom this time around has been the loss of normal function of my right side ... my face, my arm, my hand, my hip, my leg, my foot. Because my right side it not working correctly the rest of my body has had to make adjustments. As a result, my foot, leg, hip and back have been hurting. And then a few days ago my neck really started hurting.

I have not yet used a cane for walking but seriously was considering it this time around - and even more so once I discovered my whole body was messing up. Maybe if I had used a cane I would not have strained things so much? Maybe there is someone reading this that can give me the answer to that question? Thoughts? Ideas? Suggestions?

I am set to see my neurologist again this coming fall, Lord willing. I plan to talk to her about a physical therapist for times like this and also to teach me about using a cane (how, when, and what kind would suit me).

Exacerbation, flare, relapse: the real deal or just a "pseudo"?

It took  me several years to learn the difference between a real exacerbation (aka flare or relapse) and a "pseudo" exacerbation. In case you are in the dark, here you go [according the the National MS Society]:

Exacerbation
The appearance of new symptoms or the aggravation of old ones, lasting at least twenty-four hours (synonymous with attack, relapse, flare-up, or worsening); usually associated with inflammation and demyelination in the brain or spinal cord.

Pseudo-exacerbation
A temporary aggravation of disease symptoms, resulting from an elevation in body temperature or other stressor (e.g., an infection, severe fatigue, constipation), that disappears once the stressor is removed. A pseudo-exacerbation involves symptom flare-up rather than new disease activity or progression.

My thoughts: I believe stress and lack of sleep should be added to the "pseudo stressor" list. I guess lack of sleep could be lumped in with 'severe fatigue' however now that I have MS I see fatigue in a whole new way. There is a huge difference between 'lack of sleep' (aka tired or even extremely tired) and 'severe fatigue'. I can still function when I am tired or even extremely tired but I cannot function when I have what I would consider severe fatigue. I can hardly close my mouth to stop from drooling when I'm sitting on the couch trying to look alive.

Here are some good resources that better explain this topic. If you know of any others, please share.

This is a podcast where doctors discuss the differences between an exacerbation and a pseudo-exacerbation.

This is a PDF chart with guidance from one clinic about what to do when you think you're having an exacerbation.