Archive for category Fatigue

[BLOG POST] Early warning signs of fatigue – Headway

Early warning signs of fatigue

Early warning signs of brain injury fatigue

“It’s like a switch is flipped”

Fatigue is a personal experience that is different for everyone. It may feel like overwhelming tiredness, which makes people unable to complete normal activities of daily living. It may also worsen the difficulties associated with a person’s brain injury, for example, forgetfulness, irritability, slurred speech, distractibility or dizziness.

Recognising the signs of fatigue as quickly as possible can be hugely beneficial, allowing people to take steps to rest and in many cases lessen its impact.

Our Brain Drain: Wake up to fatigue campaign showed that almost 90% of brain injury survivors’ lives are negatively affected by ‘pathological fatigue’, while three in four felt that they needed help to understand the effect that fatigue has on them.

We asked our followers on social media to share what fatigue means to them.

Physical signs

man with his head in his hands

Many people told us about the physical signs they experience when their fatigue worsens.

Chris Walsh says, “it shows in my face. My head feels like it will explode, I feel sick, anxious and disorientated.”

Beverley Roberts describes feeling more pain than normal when she’s fatigued. “I also start to walk off balance”, she says.

Other people reported their head and limbs feeling heavier, as well as problems with temperature regulation – feeling either too hot or too cold.

Communication problems

A change in speech was one of the more common responses, which may be caused by the fatigue exacerbating cognitive difficulties resulting from the brain injury.

Michelle Hickinbottom recalls:

I can’t think properly, my speech gets a bit disjointed and I’m not able to think about what I’m saying before I say it.

Steph Healy experiences similar difficulties, stating: “fatigue always starts with losing half of my vocabulary, I can’t recall the word for anything or I use the wrong word and then start stammering and getting confused”.

Sometimes it’s family members who notice the signs of fatigue before the survivor. Amba Kemp-McMahon describes how her husband loses the ability to remember words in conversation: “Luckily it’s usually just between ourselves, when in company he’ll force his brain to work harder, leading to exhaustion in private. I can see it in his face.”

Click here to read more about communication problems after brain injury.

Psychological effects

When people experience high levels of fatigue which stops them doing what they want to do, they may report feeling low and irritable. Before triggers are identified, many people feel fatigue is something they are unable to control and this can lead them to feel helpless or hopeless.

Mood changes were commonly highlighted as a sign of fatigue.

Dennis Grace states that he gets “irritable and snappy” and this is a feeling shared by many.

Feelings of frustration, despair and hopelessness were described by Jinnette Damaney, while Meggy Robertson recalls how “everything starts to feel grey and pointless”.

Read more about the emotional effects of brain injury here.

Recognising fatigue

Many people reported a struggle to recognise their fatigue or understand how quickly it develops.

Simon Patrice-Booth says:

I haven’t the capability of knowing, I only realise when my brain starts to shut down.

This is a feeling shared by Liz Clark, who explains: “my brain injury is as such that I don’t recognise it, it’s a constant battle and no amount of sleep can ever elevate or leave me feeling refreshed”.

Catherine Hammond describes how other people often notice the signs before she does: “my friends and family can see the change in my face, sometimes before I’ve even noticed it myself.

Probably because I want to plough through as I’m fed up of giving into it.

Describing fatigue

Sometimes it can be hard to put the early warning signs of fatigue into words. Here are a couple of the more imaginative ways used to describe it.

“I cannot regulate my emotional or energy output anymore, it’s like a switch is flipped and until the fuse burns out, I can’t stop” – Paul Graham.

“It’s like going from normal to drunk, from drunk to hungover in five minutes” – Jon D Heath

Fatigue can be a particularly debilitating effect of brain injury, and it is important to seek support to help manage it. You can find out more in our booklet Managing fatigue after brain injury, or contact our helpline on 0808 800 2244 or helpline@headway.org.uk to talk things through.

Source: https://www.headway.org.uk/about-brain-injury/individuals/brain-injury-and-me/early-warning-signs-of-fatigue/?fbclid=IwAR33DS5o599rf2igETalyIWmtE7cq3l8mFuEAquH6vN53BeOHY6hi739VG4

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[BOOK Chapter] Long-Lasting Mental Fatigue After Traumatic Brain Injury – A Major Problem Most Often Neglected Diagnostic Criteria, Assessment, Relation to Emotional and Cognitive Problems, Cellular Background, and Aspects on Treatment

By Birgitta Johansson and Lars Rönnbäck

1. Introduction

Fatigue after traumatic brain injury (TBI) is common, but often overlooked. But for people fighting their fatigue after brain injury day after day, fatigue is a major problem. This post-injury mental fatigue is characterized by limited energy reserves to accomplish ordinary daily activities. Persons who have not experienced this extreme exhaustion which may appear suddenly, and without previous warning during mental activity, do not understand the problem. This is especially difficult to understand as the fatigue may appear even after seemingly trivial mental activities which, for uninjured persons, are regarded as relaxing and pleasant, as reading a book or having a conversation with friends. A normal, well-functioning, brain performs mental activities simultaneously throughout the day, but after a brain injury, it takes greater energy levels to deal with cognitive and emotional situations.

In this chapter, we highlight mental fatigue after TBI. In the case of long-lasting mental fatigue, it could be the only factor that keeps people from returning to the full range of activities that they pursued prior to their injury with work, studies and social activities. We describe mental fatigue and suggest diagnostic criteria and we also give a theoretical explanation for this. At the end of the chapter, we discuss treatment strategies and give some examples of possible therapeutic alternatives which may alleviate the mental fatigue.

Normally, the brain works in an energy-efficient manner and prominent energy reserves are present. This is due to well-functioning ion channel and amino acid transport systems and other effective physiological processes. After brain injury, some of these systems are down-regulated, and when mental energy requirements are high the physiological processes do not function to their full capacity; these cease to function efficiently with a resultant energy loss. This may be an explanation as to why the mental fatigue appears.

1.1. When does mental fatigue occur?

Annually, about 100-300/100 000 individuals sustain a TBI, and most of the injuries are mild in severity [1]. A majority of patients recover within one to three months following mild TBI [23].

Fatigue is one of the most important long-lasting symptoms following TBI, and is most severe immediately after head injury. However it is difficult to arrive at any clear figure as to how common fatigue or, in particular, mental fatigue is. The reason for this is that different results have been obtained, and these are attributable to differences in definitions and differences in the methodology in the various studies. In follow-up studies, the frequency of prolonged fatigue varies from 16 up to 73 % [46]. There is no correlation between persistent fatigue and severity of the primary injury, age of the person at injury or time since injury [78]. For those suffering from fatigue 3 months after the accident the fatigue remained relatively stable during longer periods [9]. In particular, for those subjects who were suffering from the syndrome one year after the accident improvement in the fatigue was limited [10].

In the above reports, fatigue is discussed in terms of a single construct, i.e. not differentiated between the physical or mental aspects. In this chapter, we consider mental fatigue as a separate construct and we discuss its relationship to cognitive and emotional symptoms.

1.2. Mental fatigue is not a separate diagnostic entity

Mental fatigue is not an illness, rather it represents a mental sequel, probably due to a disturbance of higher brain functions, either physical or psychological in origin. It is included in, and defined within the diagnoses Mild cognitive impairment (F06.7), Neurasthenia (F48.0) and Posttraumatic brain syndrome (F07.2) [11].

1.3. Typical characteristics of mental fatigue

A typical characteristic of pathological mental fatigue after TBI is that the mental exhaustion becomes pronounced during sensory stimulation or when cognitive tasks are performed for extended periods without breaks. There is a drain of mental energy upon mental activity in situations in which there is an invasion of the senses with an overload of impressions, and in noisy and hectic environments. The person feels that their brain is overloaded after a tiny load. Another typical feature is a disproportionally long recovery time needed to restore the mental energy levels after being mentally exhausted. The mental fatigue is also dependent on the total activity level as well as the nature of the demands of daily activities. Fatigue often fluctuates during the day depending on the activities carried out. Thus, this fatigue is a dynamic process with variations in the mental energy level. The fatigue can appear very rapidly and, when it does, it is not possible for the affected person to continue the ongoing activity. Common associated symptoms include: impaired memory and concentration capacity, slowness of thinking, irritability, tearfulness, sound and light sensitivity, sensitivity to stress, sleep problems, lack of initiative and headache [12].

For many persons, this mental fatigue is the dominating factor which limits the person’s ability to lead a normal life with work and social activities. For most people, fatigue subsides after a period of time while, for others, this pathological fatigue persists for several months or years even after the brain injury has healed. Interestingly, however is that as many as 30% of family or friends interpreted fatigue as laziness [9].

Theories as to the mechanisms accounting for mental fatigue including our own theory, suggest that cognitive activities require more resources and are more energy-demanding after brain injury than usual [1314]. Thus, more extensive neural circuits are used in TBI victims compared to controls during a given mental activity [15]. This indicates an increased cerebral effort after brain injury.

Figure 1.
Schematic representation of recovery of mental energy after TBI. The green line represents a full recovery while the blue and red lines represent impaired recovery in terms of the mental energy levels. Persons whose recovery follows the blue line recover partially. On their return to work and daily activities, they are not able to manage and they become exhausted. Persons whose recovery follows the red line do not recover and are not able to return to work and daily activities.

 

Therapist Luann Jacobs describes mild TBI and the lack of energy and lack of endurance that many can experience. As they are able to do what is normal and what appears normal, they run the risk that their symptoms will be misunderstood [16].

“Mild brain injury is a real misnomer, as it conveys the idea that nothing much is a problem when quite the opposite is more often true. It is called “mild” because, in fact, the mildly brain injured can walk, talk, eat and dress independently, often times drive a car, shop, cook, go to school, or even work.

What the term fails to account for is the inherent limits of how often, for how long (endurance), and the all-important, how consistently (e.g., every day, once a week) these activities can be performed. Even more elusive is the concept of how many of these daily activities can be done sequentially in a given day as is normal in the lives of people who are not brain injured.

The fatigue they feel defies description, going far beyond and far deeper than anything a non-brain-injured person would consider profound exhaustion.”

Continue —-> Long-Lasting Mental Fatigue After Traumatic Brain Injury – A Major Problem Most Often Neglected Diagnostic Criteria, Assessment, Relation to Emotional and Cognitive Problems, Cellular Background, and Aspects on Treatment | IntechOpen

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[Abstract + References] Post-stroke fatigue: how it relates to motor fatigability and other modifiable factors in people with chronic stroke

Abstract

Post-stroke fatigue (PSF) is a common symptom associated with disability and decreased quality of life. Distinction can be made between perceived fatigue and fatigability. The first aim of this study was to evaluate the prevalence of perceived fatigue and fatigability amongst patients with chronic stroke and to explore how these two parameters relate. The second aim was to study the relationship between modifiable factors (sleep disorders, anxiety, depression and activities of daily living) and fatigue in this population. Sixty-two patients with chronic stroke (> 6 months) were included. Perceived fatigue was evaluated using the Fatigue Severity Scale (FSS). Motor fatigability was assessed with the percent change in meters walked from first to last minute of the 6-min Walk Test and an isometric muscular fatigability test. Subjects also completed self-report questionnaires assessing anxiety and depression (Hospital Anxiety and Depression Scale—HADS), sleep quality (Pittsburgh Sleep Quality Index—PSQI) and activity limitations (ACTIVLIM-stroke). Seventy-one percent of participants presented PSF. There was no correlation between the FSS and motor fatigability. FSS significantly correlated with HADS-Anxiety (ρ = 0.53, P < 0.001), HADS-depression (ρ = 0.63, P < 0.001), PSQI (ρ = 0.51, P < 0.001) and ACTIVLIM (ρ = − 0.30, P < 0.05). A linear regression model showed that the HADS-Depression, the PSQI and the ACTIVLIM explained 46% of the variance of the FSS. A high proportion of chronic stroke patients presents PSF, with no relation between their fatigue and fatigability. Perceived fatigue is associated with potentially modifiable factors: anxious and depressive symptoms, poor sleep quality and activity limitations.

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via Post-stroke fatigue: how it relates to motor fatigability and other modifiable factors in people with chronic stroke | SpringerLink

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[BLOG POST] Fatigue: Life on an empty tank

Until 2 years ago, I’ve lived my life thinking that I had a pretty good idea of what being tired meant. Being tired was associated with a big week at work, a late night out, a big workout, a bad night sleep, dealing with a stressful event and so on. Being tired was basically a normal physical response when i had put my body under the pump. A bit of quiet time, a bit of extra rest and sleep, a few minor changes in lifestyle and I’d usually bounce back pretty quickly and get back to my usual levels of energy. But what happens when being tired turns into fatigue?

I’ve thought long and hard about some sort of analogy that would draw an accurate picture of what the term fatigue now means for me. Since encephalitis “e” and its resulting brain injury, we have often use the whole energy tank comparison ie. where you start your day on a full tank, mine may only be half full…therefore, I have to choose where I’ll be investing my energy, as comes a point where I will most likely run out of energy. From there, I thought that the whole car analogy could work quite well with the point that I am trying to put across.

What happens if you constantly run your car on an empty tank? Well, you may be able to make it to your destination (or the petrol station) most days, but your chances of running out of fuel are also much greater than someone who is accustomed to run his car on a full tank right? If you’ve run out of fuel while driving before, you know first-hand what happens when the last drop is used. Your car pretty much goes in lock down mode and after a few 100 metres, it will come to quite an abrupt stop. Your car won’t keep moving forward because you so badly want to reach the next petrol station right? You might even see the petrol station 500 metres ahead, but that won’t get your car to it….well not without spending a huge amount of physical effort to get there anyway.

Well it’s a bit the same for me when my weird wonderful brain runs out of energy. Things start to shut down…sometimes gradually and sometimes pretty abruptly. One minute I might interact in a somewhat normal manner, and the next, whoosh things start to crumble one by one right in front of my eyes. Just like a car, my brain may give me warnings signs alerting me to the fact that my fuel light has now lit up, that my fuel is running low and that a pit stop will soon be required or else shut down mode will occur. Other times, it will go from 100 km/h to 0 km/h in a split second…as if the fuel tank was punctured and the fuel is now gushing out on the ground. The speed at which things start to crumble is usually determined by my initial state of fatigue, the time of the day and the environment where I find myself at when shut down mode kicks in. If I’m at a place with lots of people and noise, the brain has to work extra hard to process all the stimuli so even with a full tank the brain energy will drain out pretty quickly…like a car, the faster you go, the more fuel you use and the faster your gauge will start leaning towards E.

Another example is if you head out on a desert road, you’ll probably chose to put a canister full of petrol in your boot to make sure that you have a back up plan should you run out of fuel along the way. It’s a bit the same when chronic fatigue is part of your daily life. You have to plan your days always allowing for a little reserve of energy in case the unforeseen cramps in. Let’s make things clear though, a reserve is called a reserve for a legitimate reason. It is only to be used in case of emergency as once you start tipping into that reserve, this is energy that is taken away from tomorrow’s usual allowed amount. Once you use the fuel canister stored in your boot, it doesn’t replenish automatically does it? Well it’s the same with fatigue. Once you tip into your reserve, you’ll either have to tweak the rest of your day to consume less energy, get additional rest/sleep to recharge or if neither are possible, you simply have to accept that tomorrow’s energy tank may only be a quarter full instead of half full to start with. Tipping into your reserve can have a huge flow-on effect.

To further feed the car analogy, say that your car is undergoing repair…well I think it is safe to say that it will no longer be available for you to use for a certain period of time. As a result, you may need to catch a ride with someone to get you places. Well when energy is limited, you may also have to rely on other people to get you through a day. Sometime just a little, sometimes more heavily, it all depends on how good you’ve been at keeping up with your fatigue management plan. Relying on other people isn’t always easy, particularly when you are used to be your independent self. That being said, you soon realise that sometimes you gotta do what you gotta do to get you to where you need to be until you car is in operating mode again.

When you deal with chronic fatigue, choosing where and when to use your energy ALWAYS comes at a premium. To put it simply, you make choices based on what will bring you joy. Not everyone has the luxury to run their car on premium fuel, but if you chose to do so you’ll do it because you are trying to do what’s best for your engine right? I guess what I’m trying to say here is that no decisions are made blindly with chronic fatigue. When I plan to spend time with people that are dear to me, it most inevitably comes at a cost to me. It’s a cost that I’m willing to waiver but knowing that the quality time spent with a dear one is equally appreciated by both parties is a must. Once I start getting the vibe that the balance is off, I may try a few more times to make sure that my own perception isn’t biased, but eventually I’ll have to make decisions based on self care and maintaining my already fragile well-being. It’s rarely a win-win situation but the people who truly understands that the quality time spent together comes at a premium will eventually step up.

If your car runs out of petrol you generally have a couple of options available to you. You may be able to walk to the nearest petrol station, borrow a fuel canister to refill your car or you may have to call a friend/family/roadside assistance to come and help you out. You will eventually refill your car one way or another and off you’ll go again. You may get to your destination a bit late, have a bit of explaining to do, but generally that’s as bad as things will get.

That’s where the brain/car analogy stops unfortunately. The impact of a brain shutting down can be quite devastating and can include various effects. Your body may stop responding as it should and do lots of weird and wonderful things e.g.: loss of coordination, shaky hands, foggy brain, heart rate ramping up and down randomly, vision going blurry, speech slurring, feeling nauseous, struggling to control your body temperature, headache and hypersensitivity to noise or light to only name a few. From here on, you may get very confused, you may stop being able to make sense of what’s happening around you and you may get very emotional from losing all control over you body. You are aware of what’s happening, you experience every second of it, but not much can be done to slow or stop you from going down the slippery slope apart from seeking quiet place and resting. Unlike a car, you may not be able to hit the road again so quickly either. It may take days/weeks for you to replenish your energy tank sufficiently to recover enough to operate “normally”…or to whatever your new baseline might be.

I now know that fatigue is very different from being tired or normal levels of fatigue that we all experience from time to time. Fatigue is physical and mental exhaustion that is hard to shake off even with huge amount of sleep. Fatigue is that awful AWFUL feeling of emptiness right in the middle of your chest. Fatigue is struggling to get out and about your usual life in spite of all the motivation/good intention in the world. Fatigue is feeling like your 40 year old body is stuck in that of an elderly person (no offense to older readers here). Fatigue is like having to run a marathon going up and down a mountain range…in knee deep mud. You eventually see the finish line in the distance, but will no doubt need the help and encouragement of those you love the most to get though the 42.2km and to cross the finish line.

Lucky me, I love to run and I have never been one to choose the easy road so I know I will always find that little bit of extra motivation and determination to try to bounce back, to implement the right fatigue management measures to eventually win the battle over a set back and fatigue. Does it still suck? Absolutely. Do I still feel quite misunderstood by most people surrounding me? Absolutely. But I hope that I keep trying to be the best I can be, that I manage to offer my loved ones the best that I have to offer on any given day.

Everyone is different, but check out the following blog which provides some tips on fatigue management.

Read about the spoon theory which is another way to explain fatigue.

via Fatigue: Life on an empty tank

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[VIDEO] Traumatic Brain Injury: Understanding Fatigue – YouTube

The TBI Coach, Nathalie Kelly, explains cognitive fatigue in a way that everyone can understand. Brain fatigue is a huge debilitating issue for those with brain injuries and concusssions. See the full transcript below.

Hello my beautiful and courageous friends,

Do you find it hard to understand that at some moments someone with a TBI can appear to function pretty well, and a minute later they are stuttering and stumbling?

It’s called Cognitive Fatigue. Cognitive fatigue happens because the injured brain is working very hard . Since the old pathways are broken, your amazing brain is having to find new paths. when the brain is overloaded and it is like your brain switch being turned off. One minute you are there, and the next minute, it was too much, a fuse blew, and you are gone.

It can be so extreme of a contrast, that people get accused of faking their brain injury. That hurts!

The best explanation I have ever heard comes from Dr. Clark Elliott in his fabulous book “The Ghost in My Brain”. He came up with a great metaphor. It is as if we have 3 energy batteries, an A, B, C battery.

The most efficient battery is the A battery. For most people, it gets charged up each night with sleep,and lasts throughout the day. When the A battery gets used, we have to turn to our B battery. The B battery does not last as long and takes a lot longer to charge. When the B Battery runs down, we have to turn to our emergency battery, the C battery. The C battery should be for dire emergencies only. It only lasts a short while and it takes days to recharge. It’s kinda of like your laptop tells you you have 2% battery left. And then it shuts off and the screen goes black.

When you have a TBI, your A battery gets used up processing things that took no effort before. An enormous percentage of our brain’s energy goes toward processing vision. While it was no problem before, now Processing vision and sound, balance and motion, now takes most of your available energy. So your A batteries are always depleted.

You are now running on B batteries to do anything else, getting groceries, driving a car, going to work. They are not going to last long. And so you are dipping into the C batteries on a daily basis and not just during an emergency.

This is what it looks like when the C batteries are depleted. There will be days of sleep to pay for pushing it this far.

At the beginning of a brain injury when your brain is working really hard to find workarounds for the broken connections, you may be like this most of the time. Over time, as your brain slowly heals, your ability to process information improves and now your A battery has a little more capacity. As you get better you are tapping into you C battery less and less, perhaps only on rough days instead of everyday.

When you are fatigued, it is really important to sleep. That is the only way the batteries get charged again. And that is how our brain heals. New studies show that sleep is the process during which the brain dispels toxins so it can function at its best.

So, if someone you love has a Brain Injury and you can tell they are fatigued. What they need from you is an Immediate response. It takes less than a minute to go from one battery cell to the next, Take them out of the situation, the restaurant, the noise, and get them to quiet, dark, and rest ASAP. You do not want to linger. and You do not want to push the system into the C batteries.

Please share with our community your thoughts and experiences in the comment section below. What do you think of this A B C Battery metaphor? What helps you with cognitive fatigue?

Visit my website http://www.TheTBICoach.com for more helpful videos and tips and for my special report on 3 Things Everyone with a TBI Should Know.

via Traumatic Brain Injury: Understanding Fatigue – YouTube

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[Abstract] Post-stroke fatigue and daily activity patterns during outpatient rehabilitation: An experience sampling method study

Abstract

Objective

To advance our understanding of post-stroke fatigue by investigating its momentary and time-lagged relationship with daily activities

Design

Longitudinal observational study using the experience sampling method (ESM)

Setting

Outpatient rehabilitation care

Participants

Thirty individuals with stroke

Main outcome measures

ESM is a structured diary method that allows assessing real-time symptoms, behavior, and environment characteristics in the flow of daily life, thereby capturing moment-to-moment variations in fatigue and related factors. Using the mHealth mobile application PsyMateTM, individuals with stroke were followed during six consecutive days, and were prompted at 10 random moments daily to fill in a digital questionnaire about their momentary fatigue and current activity: type of activity, perceived effort and enjoyment, and physical activity levels.

Results

Based on all completed digital questionnaires (N = 1013), multilevel regression analyses showed that fatigue was significantly associated with type of activity and that fatigue was higher when participants had engaged in physical activity. Fatigue was also higher during activities perceived as more effortful and during less enjoyable activities. Time-lagged analyses showed that fatigue was also predicted by physical activity and perceived effort earlier during the day. Importantly, the relationship between these daily activity characteristics and fatigue differed substantially across individuals.

Conclusions

This study illustrates the need for ESM to design personalized rehabilitation programs and to capture fatigue and other patient reported outcomes in daily life.

Source: https://www.archives-pmr.org/article/S0003-9993(20)30026-5/fulltext?rss=yes

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[VIDEO] Managing Fatigue After A Brain Injury – YouTube

via Managing Fatigue After A Brain Injury – YouTube

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[BLOG POST] Five Reasons Fatigue Isn’t Like Normal Tiredness (Proving Most People Don’t Get It)

When you’re dealing with a chronic illness, there are a lot of things non-sick people say that are annoying. Things such as, “Aren’t you better yet?” Of course not. This is a chronic illness, not a you-have-it-for-a-week-and-then-it’s-over-with illness. You don’t say that, though. You smile and say, “unfortunately not.” Or friends and family might make a comment about how you’ve taken a lot of time off work lately, as if it was your life plan to become disabled. Or they might mention that you don’t go out much anymore…because clearly you prefer to stay in laid up in bed.

But the most jerkish thing people do is act like the fatigue you’re dealing with—the bone wearying, debilitating, sometimes disabling fatigue—is equivalent to how they felt when they ran a 10k that one time. “Just get more sleep,” they’ll tell you. Or, “You need to push through it. We all get tired.” If you weren’t so fatigued you’d punch the guy right in the face. But you are, so you smile and nod.

Even worse than thoughtless friends spouting this nonsense, is when you get the same thing from doctors. You’d think someone medically trained would be taught the difference between fatigue and normal tiredness, but they’re not. There aren’t even terms to differentiate the two, really. So for medical professionals and non-medical professionals alike, I’ve created a list of the top five reasons that fatigue and normal tiredness should not even be considered in the same sentence. (Other than that one, of course.) Feel free to share it with anyone who doesn’t get it.

5. Sleeping “cures” tiredness; it’s only mildly helpful for fatigue.

When you have chronic fatigue, the number one piece of advice you get from well-meaning non-sick people is to get more sleep. It makes sense. They reflect on their own life and think, “You know, when I feel tired, if I get a good night’s sleep I feel better. Sally should try that.” But that doesn’t work for Sally, and you know why? Because Sally has fucking lupus or Ehlers Danlos Syndrome or Rheumatoid Arthritis. Feeling tiredness in your muscles because you ran some extra errands today is resolved by getting a good eight hours of sleep, but do you know what is not cured by sleeping? Sjogren’s Syndrome. Multiple Sclerosis. Umm, cancer.

While it’s true that getting plenty of rest is good self-care that can reduce flares, it’s not a cure-all, and to suggest that it is is belittling. Especially considering that many people with chronic fatigue are often already sleeping much of the day. Some chronic illnesses sufferers can sleep for sixteen or twenty hours a day and still feel fatigued. Or even if they’re sleeping a normal eight hours, they may feel their worst in the morning, just when you’d predict they’d feel best if their issue was lack of sleep. And all of this ignores the fact that for some people…

4. Fatigue can actually keep you awake.

Sounds stupid, doesn’t it? After working hard all day, most people can lay their head on their pillow and be out within five minutes. Not the case with fatigue. I, myself, have a condition called lupus. It’s an autoimmune disorder, which means that my immune system literally attacks my body rather than outside invaders. It’s sort of like friendly fire in a war. My immune cells are like, “Sorry kidney! Didn’t mean to murder you when I was trying to take out that cold virus. My bad.”

So the fatigue I get stems from the fact that my body is working really hard against the onslaught from…my own body. This sort of fatigue can be so overwhelming that it’s uncomfortable. It’s almost like the tiredness equivalent of pain. It simply doesn’t feel the same as what you experience after doing a lot of cardio. It feels more like your entire life force has been sucked out of your body. It’s disconcerting.

You know that indescribable symptom you get when you have the flu? Not the runny nose or congestion. The feeling that you’re just “sick.” It’s like that feeling amplified. And that feeling is uncomfortable even if there’s not actual pain associated with it (which, with most chronic illnesses, there is anyway). This horrible feeling of fatigue can overcome you and actually make it difficult to fall asleep.

If this seems stupid and horribly counterproductive, you’re right! It feels that way to the sick person too. There’s nothing worse than being horribly fatigued, and yet not being able to fall asleep. That’s why a person with chronic fatigue will recoil at your advice to get more sleep. They’re trying and reminding them of their failure only makes them want to cut you.

3. Pushing through tiredness means you get extra work done; pushing through fatigue means you’re out of commission for a week.

This is probably the biggest pet peeve of the chronically ill: the suggestion that they should just suck it up and push through it. That is actually the worst single piece of advice you could give a chronically ill person, and this is why. People possessing average energy stores and bodies that aren’t falling apart can go for a day or week or even month where they’re not getting enough sleep. Sure they’ll feel crappy, but once they take a weekend to really rest, their body will be back to normal. For a healthy person, it might be totally reasonable to push through some tiredness to get extra work done.

Not so for chronically ill people. Being chronically ill is sort of like starting every day on three hours of sleep, regardless of how much sleep you’ve actually gotten. Strike that. It’s like starting the day on three hours of sleep plus you have the flu. A flu that might never go away or get better. (I’m a bundle of laughs at parties, let me tell you.) If a chronically ill person tries to “push through” their fatigue, they could actually make themselves substantively sicker. The immune system that was just sort of nibbling on their kidneys will now go on full attack, or the moderate pain they had in their joints will be turned up to eleven. And, as you can imagine, that increase of symptoms doesn’t just last during the period that they’re “pushing through” their fatigue. It can last for weeks because now they’ve actually made themselves sicker. Telling a chronically ill person to just suck it up and push through the fatigue is like telling a lung cancer patient to just have another five cigarettes. Go ahead! Suck that smoke through your throat hole. It won’t hurt you.

2. Tiredness is to fatigue as a pimple is to face herpes.

Hopefully this article has already made this clear, but fatigue is far far worse than being tired. Have you ever been so tired after a hard day’s work that you literally couldn’t talk? I haven’t, and I’ve worked very physical jobs. I used to set up stages and sound systems for concerts, lifting super heavy stuff in the heat for sixteen hours at a time. I’d be sore and I’d want to get in the hot tub at the end of the day, but I could always talk. Not so with lupus. Sometimes I am literally so fatigued that it is too much exertion to open my mouth and talk. If you knew me, you’d know what a personal tragedy this is. I am a talker. There is nothing I like more than shooting the shit. My husband wooed me by staying up until noon talking to me all night. On, like, fifteen occasions. That’s how much I love talking.

Recently I created a fatigue scale after I realized that doctors don’t have one. It is as follows:

Tiredness for me maxes out at around a 4. No matter how tired I am, I could always make myself run errands if I had to. When I’m fatigued, though, it’s not just that running errands is a bad idea (which it is). Sometimes I literally don’t have the strength, coordination, or mental capacity to do it. So for any non-sick person who’s never experienced fatigue beyond a four, your advice, while well meaning, is useless because you literally don’t get it.

1. Fatigue is a daily struggle; tiredness is a temporary inconvenience.

Finally, one of the worst things about struggling with chronic fatigue is that you don’t know if it’ll ever end. Most doctors don’t take complaints of fatigue seriously, and even when they do, there’s not much they can do for it anyway. We don’t have an opioid-equivalent fatigue reliever. We don’t even have a tylenol equivalent. When a non-sick person feels tired, they know that if they get a good night’s rest or take a vacation, they’ll feel better. There is no vacation from fatigue. You could fly to Aruba and you’d be just as debilitated.

That’s why the douchy “just get a good night’s sleep” comments sting so badly. If you had even half an understanding of what it’s like to live with this sort of fatigue, there’s no way you’d suggest that. Do you really think someone is this debilitated and they hadn’t even considered, umm, I don’t know, sleeping more. Of course they’ve tried sleeping more! They’re sick, not a moron.

So please. If you’re someone who’s lucky enough not to struggle with chronic fatigue, don’t be a douche. It’s really easy. Just treat the person you’re talking to with respect and assume they have as much common sense as you do.

 

via Five Reasons Fatigue Isn’t Like Normal Tiredness (Proving Most People Don’t Get It) — Miss•Treated

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[BLOG POST] Perfectly Imperfect For The Holidays – TBI Survivor Tips and Observations

By Bill Herrin

Living with a TBI is a reality all its own, and as I reiterate in many posts – it’s different for everyone, including how people around you act, react, overact, act up, or don’t react to you at all. With the Holidays now “officially” here, and Thanksgiving already passed – it’s the time of year that many people dread, and for many good reasons.

The way some people celebrate seems so perfectly “normal” from the outside – the whole family gets together, they have dinner together, or they open gifts, or they have a wonderful party…and that can happen, but from the outside it seems much more “perfect” than anything that we experience in our life. Why is that? Well, living with TBI overshadows a lot of our being, and it’s no wonder…it’s changed who we are in some ways.

It can change us immensely and visibly, or it can change us in a less obvious way – and sometimes, people don’t see what it’s done to a survivor at all. Either scenario can be very frustrating for the survivor of TBI, stroke, concussion, mild TBI, acquired brain injuries, etc.

Making The Holidays More Positive

On one hand, getting together with family and friends during the Holidays after TBI can be an annual test of wills due to lack of patience or empathy for one another, misread intentions, disagreements, or just a lack of understanding for each other.

On the other hand, all families, no matter how perfect things appear on the surface, can have similar issues. Yes, some actual families do get along great, and the Holidays are a positive experience for them – but don’t be dismayed, because (at the end of the day) we’re all perfectly imperfect people. Brain injury or no brain injury!

The point being made is plain and simple – although TBI survivors bear a load of issues in situations with people around, many times they still are left to shoulder the weight of inconsideration, improper actions, comments and more. Being the bigger person is hard to do (especially under the circumstances) but it’s worth the effort!

A Little Empathy Goes A Long Way…

Whether you’re reading this as a TBI Survivor, a caregiver, or as a friend or family member – it’s important to always work toward being empathetic toward each other.

As a survivor, knowing that everyone hasn’t experienced what you have been through is a good rule of thumb for overlooking things that could easily get under your skin. As a friend or family member, remember that you have no clue what it’s like to have a TBI is a good starting point, and overlooking things (that are said) can keep things on an even keel.

The same goes for a TBI survivor that fields negative comments or verbal jabs…working to focus on being together is the point! Enjoying each other’s company is a rarity and should be treated that way – as perfectly imperfect as any of us are.

Some Suggestions

Here are some suggestions to help make the Holidays less frustrating, and hopefully a better experience for a TBI Survivor (and their friends & family):

• Avoid alcoholic drinks (especially when using medications)

• Noise-canceling headphones or earplugs to bring noise levels down to a manageable level

• Bring someone with you that understands your needs when you go shopping, to a party, or for dinner at home (or elsewhere) with others

• Be careful to avoid sensory overload, and act accordingly at an event if necessary (retreat for a bit, leave early if needed, etc.)

• Be rested before any Holiday party, gathering, parade, etc. – if you know that a Holiday parade or program is going to be overwhelming, you may be better off skipping it altogether

• Do your Holiday shopping (along with a friend or family member, etc.) when crowds are at a minimum

• If blinking or bright holiday lights bother you, plan (in advance) to have sunglasses handy, or even a place that you can retreat to if necessary

• Unless you’re certain that a fireworks display is ok to attend, it may be best to skip it (New Year’s Eve, etc.)

• Movies, concerts, outdoor events with lots of lights can all cause issues for Survivors…base your decisions to go on previous experience when possible. If not, do you best to plan in advance on how you (with a friend or loved one) will have an action plan to deal with it

• Try to avoid situations that may overstimulate your senses. Noise, crowds, lights, etc. can trigger anxieties (fear, panic, etc.) and even fatigue – when your brain is overloaded by too many things going on at once

• Another good thing to keep in mind is to ask for assistance if you need it – taking on too much by yourself is asking for trouble, and if you have someone willing and able to help you, let them!

In closing…

In closing, if you’re a TBI Survivor – try to pace yourself during the holidays when there’s so much going on, and not get too overloaded with things to do, places to go, and people to see. As a friend, family member, or caregiver of a person with TBI – keep this in mind as well!

Helping advocate for a TBI Survivor is very important, and they will do much better with you as their “overload avoidance” point person (or team). Happy Holidays to all, and we’ll see you in 2020.

 

via Perfectly Imperfect For The Holidays – TBI Survivor Tips and Observations

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[ARTICLE] Follow-up after 5.5 years of treatment with methylphenidate for mental fatigue and cognitive function after a mild traumatic brain injury – Full Text

Objective: Prolonged mental fatigue and cognitive impairments are common after a mild traumatic brain injury (TBI). This sets limits for rehabilitation and for regaining the capacity for work and participation in social life.

Method: This follow-up study, over a period of approximately 5.5 years was designed to evaluate the effect and safety of methylphenidate treatment for mental fatigue after a mild TBI. A comparison was made between those who had continued, and those who had discontinued the treatment. The effect was also evaluated after a four-week treatment break.

Results: Significant improvement in mental fatigue, depression, and anxiety for the group treated with methylphenidate (p < .001) was found, while no significant change was found for the group without methylphenidate. The methylphenidate treatment group also improved their processing speed (p = .008). Withdrawal produced a pronounced and significant deterioration in mental fatigue, depression, and anxiety and a slower processing speed. This indicates that the methylphenidate effect is reversible if discontinued and that continued methylphenidate treatment can be a prerequisite for long-term improvement. The effect was found to be stable and safe over the years.

Conclusion: We suggest methylphenidate to be a possible treatment option for patients with post-TBI symptoms including mental fatigue and cognitive symptoms.

Introduction

Long-term mental fatigue and cognitive impairment are common after a mild, moderate or severe traumatic brain injury (TBI) and these can have a significant impact on work, well-being and quality of life (1). Fatigue and concentration deficits are acknowledged as being one of the most distressing and long-lasting symptoms following mild TBI (1). There is currently no approved treatment (2), although the most widely used research drug for cognitive impairments after TBI is methylphenidate (3). A few studies have used methylphenidate for mental fatigue after TBI with promising results including our own (4,5). Other clinical trials of drugs have reported improvements in mental fatigue ((−)-osu6162 (6)) or none ((−)-osu616, modafinil (79)).

In our feasibility study of methylphenidate (not placebo controlled) we reported decreased mental fatigue, improved processing speed and enhanced well-being with a “normal” dose of methylphenidate compared to no methylphenidate for people suffering from post-traumatic brain injury symptoms (4). We tested methylphenidate in two different dosages and found that the higher dose (20 mg three times/day) had the better effect compared to the lower dose. We also found methylphenidate to be well tolerated by 80% of the participants. Adverse events were reported as mild and the most commonly reported side-effects included restlessness, anxiety, headache, and increased heart rate; no dependence or misuse were detected (10). However, a careful monitoring for adverse effects is needed, as many patients with TBI are sensitive to psychotropic medications (11).

Participants who experienced a positive effect with methylphenidate were allowed to continue the treatment. We have reported the long-term positive effects on mental fatigue and processing speed after 6 months (12) and 2 years (13). No serious adverse events were reported (13)(Figure 1). In a 30-week double-blind-randomized placebo-controlled trial, Zhang et al. reported that methylphenidate decreased mental fatigue and improved cognitive function in the participants who had suffered a TBI. Moreover, social and rehabilitation capacity and well-being were improved (5). Other studies evaluating methylphenidate treatment after TBI have focused only on cognitive function reporting improved cognitive function with faster information processing speed and enhanced working memory and attention span (1421). A single dose of methylphenidate improved cognitive function and brain functionality compared to placebo in participants suffering from post-TBI symptoms (22,23). Most of these have been short-term studies covering a period between 1 day and 6 weeks and included participants suffering from mild or more severe brain injuries.

This clinical follow-up study was designed to evaluate the long-term effect and safety of methylphenidate treatment. We also evaluated the effect after a four-week treatment break and compared the subjective and objective effects with and without methylphenidate. Patients who had discontinued methylphenidate during this long-term study were also included in this follow-up, as it was our intention to compare the long-term effects on mental fatigue in patients with and without methylphenidate treatment.

[…]

 

Continue —->  Follow-up after 5.5 years of treatment with methylphenidate for mental fatigue and cognitive function after a mild traumatic brain injury: Brain Injury: Vol 0, No 0

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