It's been a while since being around here... after getting over my frustrations with doctors, I realized I needed to set up with a new neuro and a new PCP. These are two very daunting tasks for me as it's a challenge to find doctor's I can trust to listen to me as I explain my body to them. I have lucked out and am happy with my new neuro and my new PCP... both are very thorough and follow through well. They're also very forthright with the information with me and I find that refreshing.
Several different kinds of fatigue occur in people with MS. For example, people who have bladder dysfunction (producing night-time awakenings) or those with nocturnal spasms, may be sleep deprived and suffer from fatigue as a result. People who are depressed may also suffer fatigue. Those who need to expend considerable effort just to accomplish daily tasks (e.g., dressing, brushing teeth, bathing, preparing meals) may suffer from considerable fatigue as a result. Chronic fatigue is one of my worst symptoms living with MS. And when I say fatigue I am not referring to a sleepy and tired feeling. More like you get plenty of hard sleep even 10 or 12 hours and wake up feeling like you had been running a marathon all night! It goes much deeper than your normal fatigue it is a complete feeling of duress. It is being forcibly confined to even making simple movements without it requiring an extreme amount of effort taken from the reserves you no longer have. Although this is not always outwardly apparent whether hidden, disguised or masked it is simply unbearable at times, this complete, whole body burnout. It is at times as bad as having a migraine coursing through your bloodstream. An unexplained and relentless pain follows interwoven with it as though it were on some path to defeating you.
There is another kind of fatigue that affects us with MS. Researchers are beginning to outline the characteristics of this so-called 'MS fatigue' that make it completely different from fatigue experienced by persons without MS.
* 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/extreme cold
* Comes on more easily and suddenly
* Is much 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. Considering the above triggers how does one function and accomplish anything daily when they are prone to this beast simply by waking up? Force seems to be my only answer so far.
And that's how I get through most of my days... by force. Then I crash. Oh for the days when rest came easy and sleep meant waking refreshed!
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| Lovelace Scientific Resources |
With that said, the neuro suggested me for an Oral Drug study which provided tons of new tests, MRI's, labwork etc... and again, for the third time O-Bands were confirmed on these tests as well as his labs and my PCP's. But I'm in the midst of a couple of MS flares that are increasingly annoying: the frozen vocal chord (causing the silent aspiration), severe MS fatigue (despite 150 mg of Nuvigil) and a lot of confusion and forgetfulness moreso lately than ever before. I had been experiencing my usual spasticity but that seems to have subsided after two weeks on this new oral drug study with ONO-4641.
The fatigue has been devastating though. I fall asleep at my laptop, oversleep appointments, miss church, don't have energy to be inspired to shower up, and tire out trying to push the shopping cart! How to feel even older at 55 than old already feels! I feel like one of Mudd's women from the old Star Trek episode, gotta pop the pill to get my spunk and get up and go.
Overall though it's nice to have an oral med that appears to be helping without much side affects. Tomorrow we do a check up and see how it goes. Hopefully the results will continue to be positive.
Here's a copy of a post I like very much describing Chronic MS Fatigue... it says it so much better than I could... What I want folks to understand is that everyone can feel this way, but everyone who does, doesn't because they have MS and because of that they cannot know the depth of the fatigue we experience!
This blog is outstanding about MS and sharing a great deal about the disease's damages!
What Makes MS Chronic Fatigue Different?
Several different kinds of fatigue occur in people with MS. For example, people who have bladder dysfunction (producing night-time awakenings) or those with nocturnal spasms, may be sleep deprived and suffer from fatigue as a result. People who are depressed may also suffer fatigue. Those who need to expend considerable effort just to accomplish daily tasks (e.g., dressing, brushing teeth, bathing, preparing meals) may suffer from considerable fatigue as a result. Chronic fatigue is one of my worst symptoms living with MS. And when I say fatigue I am not referring to a sleepy and tired feeling. More like you get plenty of hard sleep even 10 or 12 hours and wake up feeling like you had been running a marathon all night! It goes much deeper than your normal fatigue it is a complete feeling of duress. It is being forcibly confined to even making simple movements without it requiring an extreme amount of effort taken from the reserves you no longer have. Although this is not always outwardly apparent whether hidden, disguised or masked it is simply unbearable at times, this complete, whole body burnout. It is at times as bad as having a migraine coursing through your bloodstream. An unexplained and relentless pain follows interwoven with it as though it were on some path to defeating you.
There is another kind of fatigue that affects us with MS. Researchers are beginning to outline the characteristics of this so-called 'MS fatigue' that make it completely different from fatigue experienced by persons without MS.
* 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/extreme cold
* Comes on more easily and suddenly
* Is much 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. Considering the above triggers how does one function and accomplish anything daily when they are prone to this beast simply by waking up? Force seems to be my only answer so far.
And that's how I get through most of my days... by force. Then I crash. Oh for the days when rest came easy and sleep meant waking refreshed!
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