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Fatigue - don’t let it get you down

September 22nd, 2014

Fatigue is common after stroke, with 50 percent of survivors in one study saying tiredness was their main problem twelve months on.

The cause of fatigue after stroke remains unclear but one simple explanation is that cognitive, physical and sensory changes after stroke mean everything takes more effort. There’s also the theory the neuroplasticity involved in recovery is a physical process, which is actually fatiguing.

Fatigue can present as a feeling of weariness, tiredness or a lack of energy that is not improved by rest. It can be physical, mental or psychological. Symptoms of fatigue can include headache, dizziness, blurred vision, increased pain, aching muscles and reduced coordination and balance. Other symptoms include ‘brain fog’, impaired memory and decision-making, moodiness or irritability, anxiety and depression or low motivation.

Despite fatigue being so prevalent after stroke, it isn’t always discussed until it becomes problematic. Knowing about fatigue is essential to recognise its impact on daily life and to identify strategies to minimise the effects.

Maree was completely unprepared: “I didn’t know about post-stroke fatigue and so it was totally unexpected. It may have been mentioned in hospital and probably was in literature given to me at the time, however nothing and no-one seemed to emphasise the fact it can be such extreme tiredness.”

Heather’s experience of education around fatigue was different, but still difficult to navigate. “My occupational therapist made a big deal of it when I was returning to work. Which was both helpful in that people knew what to expect and harmful in that I wasn’t as badly affected by it as everyone expected me to be. So even when I was happy to push limits other people were reluctant to let me.”

For some stroke survivors fatigue improves over time, whilst for others it can be persistent and debilitating. “My fatigue still gets me down. It is still present, and has never really waned or improved dramatically. I have learned to live with it, but wish other normal people would understand how quickly I can tire” John said.

Some things that can help include:

Take care of yourself. Eat a healthy diet and drink adequate amounts of water. Get adequate sleep, go to bed at the same time each night and switch off electronic devices at least an hour before bed. And avoid drinking too much alcohol. Heather says “I’m four years post stroke now. I still need more sleep than other people and I don’t always wake up ‘awake’. Sitting down to watch telly or read a book on the weekend will usually result in an impromptu nap.”

Listen to your body and know your limits. Plan regular rest breaks and recognise any patterns of fatigue. Do tasks in a way that uses less energy, like sitting down to get dressed. Break larger tasks into several smaller tasks. Most importantly, prioritise the tasks that are most important to you. Heather’s advice is to “Plan and be aware. Remember everything takes energy and now you’ve got to conserve it. Get into a stable routine, but make space for naps as well. You can push through it but you’ll pay for it later. Be especially vigilant for things like clumsiness which can be indications you’ve pushed too far.”

Get some exercise. Move your body to stimulate good endorphins. Build up stamina and strength slowly and sensibly. John says it helps to “Establish a routine and try to stick to it. Remember to exercise, and don’t sit around all day, even if you feel like it.”

Ask for advice and support. Talk to your doctor, especially about your medications, as some can contribute to fatigue. Talk about it with supportive friends, family and other stroke survivors who have been through it.

Finally, take up some of those offers of help: you don’t have to do everything yourself. Heather’s learnt a lot about fatigue since her stroke. “I do have to watch out if it’s a stressful week at work, I find that can trigger a fatigue hit, also things like colds and sunburn that put pressure on the immune system can trigger it too. Also remember it accumulates unless dealt with. Don’t just ignore it.”

Maree’s best tip? “Accepting it, first of all. Fatigue certainly has a way of making you slow down, allowing your body to heal and ultimately that’s a good thing.”

If you need advice or have any questions about fatigue please call us on StrokeLine 1800 STROKE (1800 787 653).

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Fatigue after stroke

June 11th, 2014

Fatigue is one of the most common challenges reported by many stroke survivors. Recovering from a stroke, participating in rehabilitation, learning new ways of doing things and adjusting to life after stroke can be exhausting.

Fatigue can present as a feeling of weariness, tiredness, or lack of energy that does not always go away when you rest. People may feel fatigued – in body or mind. Post stroke fatigue can be described as physical, mental or psychological. Some stroke survivors experience all three. With physical fatigue, your muscles may tire easily and your endurance may be much lower. You might notice this when climbing stairs or carrying bags of groceries in from the car. With mental fatigue, it may be difficult to concentrate for as long as before and being exposed to loud noises or crowded environments may exhaust you. Psychological fatigue can also occur due to the emotional changes, depression and anxiety that can be experienced after stroke. In severe cases, you might not feel like getting out of bed in the morning and completing daily activities might be extremely challenging.

Stroke survivors and care-givers need to be patient and recognize that fatigue may be a long-term issue. For some stroke survivors fatigue improves significantly over time, whilst for others it can be debilitating. This may mean that you are unable to return to work full time and while you may look “ok” on the outside, the impact of fatigue may tell a very different story. Sometimes this can be difficult for friends and family to understand and also frustrating for stroke survivors.

Fatigue can cause a range of symptoms including:

Chronic tiredness or sleepiness

Headache or “brain fog”

Dizziness

Sore, aching or weak muscles

Reduced quality of walking and poor balance

Slowed reflexes and responses

Impaired decision-making and judgement

Moodiness or irritability

Impaired coordination

Loss of appetite

Reduced immune system

Blurry vision

Increased pain

Memory problems

Poor concentration

Reduced ability to pay attention

Overwhelm, anxiety or depression

Feeling out of control or helpless

Low motivation.

Here are some suggestions which may help with your fatigue:

Listen to your body and know your limits. Notice what activities increase your fatigue and spread them out throughout the day or across the week.

Plan regular rest breaks during each day. Rest may mean sitting down in silence, stopping for a drink of water, doing some deep breathing, listening to some relaxing music or having a lie down.

Break one large task into several smaller tasks. For example, you may choose to vacuum one room at a time and spread the task across the week.

Get to know any patterns to your fatigue. Plan activities for when you have the most energy. Keeping a fatigue diary can be helpful.

Do tasks in a way that uses the least amount of energy. For example, sit down on a shower chair to shower or get dressed seated on the edge of the bed. This uses less energy than standing. This strategy is called energy conservation.

Prioritise – on days when you feel tired only do the tasks which are most important to you. Some tasks may have to wait.

Have a good sleep routine. Try going to bed at the same time each night and switch off electronic devices at least an hour before bed.

Eat a healthy diet filled with fresh vegetables and fruit to fuel your body and promote healing. Drink adequate amounts of water to stay hydrated. You may need to eat regular snacks throughout the day. Low kilojoule diets, low carbohydrate diets or high energy foods that are nutritionally poor don’t provide the body with enough fuel or nutrients to function at its best. Quick fix foods, such as chocolate bars or caffeinated drinks, only offer a temporary energy boost that quickly wears off and worsens fatigue.

Even if you feel tired it’s important to do some exercise or physical activity in your day. This will help stimulate the good endorphins and help with mood. Talk to your physiotherapist about an appropriate exercise program. Build up stamina and strength slowly and sensibly.

Talk to your doctor about your medications. Some medications, especially those with a sedating effect, can increase fatigue.

Avoid drinking excessive amounts of alcohol. Drinking will increase your fatigue and can also exacerbate any impairments you have as a result of the stroke, such as impaired balance. Alcohol slows the nervous system and disturbs sleep patterns. Other drugs, such as cigarettes and caffeine, stimulate the nervous system and can cause insomnia.

Ask for help! You don’t have to do everything yourself. You may decide to arrange a cleaner so you have more time to spend with your children.

Celebrate your success and be kind to yourself. Lower your expectations of yourself while you are adjusting to life after stroke and your new “normal”. Surround yourself with supportive friends, family and other stroke survivors who have been or are going through a similar situation.

“Fatigue has always been present and each new major challenge in my life seems to set me back in a major way fatigue-wise. I no longer sleep every afternoon like I did in the first 6 months but need to take chunks of time out of my day to decompress and days out of my week to rest.” Karen Bayly – stroke survivor.

If you are struggling with fatigue after stroke please speak to your doctor or rehabilitation team. An occupational therapist can work with you to minimise the impact of fatigue on your daily life and discuss appropriate strategies. You might be tempted to dismiss how you are feeling or stoically carry on regardless. However, if you do ignore fatigue, it can lead to more serious problems in the future and you will not be giving yourself the best opportunity to recover. Remember you are not alone. You can also call StrokeLine on 1800 STROKE (787 653) to discuss or to request a copy of our fact sheet on fatigue.

Fatigue Fact Sheet

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Managing fatigue

May 17th, 2012

Tai Chi Group

Look at the symptoms and triggers of fatigue, and some strategies to minimise and manage it

Fatigue is a common and very disabling symptom experienced by people with Acquired Brain Injury (ABI) or neurological conditions. Some people describe an overwhelming sense of general fatigue that can occur at any time of the day. It happens without warning, and the person needs to rest immediately before the symptoms get worse.

Fatigue is also a problem among carers as they find themselves managing increased workloads and greater responsibilities. Members of the rehabilitation team understand our position and can recommend coping strategies and support services such as respite care. Consult with your GP or a trusted team member before your own health is affected.

What is fatigue?

The fatigue associated with brain injury or neuromuscular damage often appears more suddenly, lasts longer, and takes longer to recover from than ordinary fatigue. Make no mistake; it is real and not a case of mind over matter.

What causes fatigue?

Fatigue can occur for no apparent reason or after relatively mild exertion. It may be caused by physical activity, but is just as likely to occur as a result of mental activity.

Planning the week’s errands, organising a work schedule, calculating a weekly budget or simply reading, can be very draining. We all experience this to some extent, but for the person with a brain injury, it happens more easily and much more frequently.

Fatigue can be managed with good planning and rest periods, but first carers and the family member affected need to acknowledge that it is real.

Symptoms

The following symptoms may all suggest fatigue:

• Withdrawal
• Loss of appetite
• Shortness of breath
• Slower movement and speech
• Short answers, quieter voice, dull tone of voice
• Irritability, anxiety, crying episodes
• Increased forgetfulness
• Lack of motivation to plan for each day
• Lack of interest in things the person normally considers important (e.g. appearance, grooming)

Fatigue also intensifies symptoms experienced because of ABI or neurological condition, such as

• Poor vision
• Slurred speech
• Difficulty finding words
• Poor concentration
• Cramps or weak muscles
• Poor coordination or balance

The next step is to work out what triggers it and what factors make the symptoms worse, such as holding a demanding conversation for more than 10 minutes or watching a film with a complicated plot. You can then work together to develop strategies to conserve energy.

Managing fatigue

Contingency plans: Fatigue may occur at the least convenient times – on public transport or during a meeting. You need to negotiate ways of coping when this happens. You can use specific strategies or call in extra support. Work out contingency plans with your family member. Your physiotherapist can help with suggestions.
Assess your environment: Provide an environment that is easy to move around and work in. Think about how and where things are stored; bench heights, entrances, types of furnishing and lighting. For example some people may find fluorescent lighting or dim lighting more tiring.
Assess best hour: Some people function best in the mornings, so complete demanding tasks then. Others function better in the afternoon or the evening. Organise your routine accordingly.
Schedule rest periods: make a daily or weekly schedule, and include regular rest periods. “Rest” means do nothing at all.
Use aids: Use mechanical aids to conserve energy for when it really counts. One man spared his legs extra effort by using his wheelchair to get from his house to the car, then from the car to the church, before walking his daughter, the bride, down the aisle.
Break it down: Break down activities into a series of smaller tasks. This provides opportunities to rest while allowing the person to complete the task. Encourage sensible shortcuts.
Set priorities: Focus on things that must be done and let others go.
Medication highs and lows: Be aware of changes throughout the day that relate to medication. Is the person better or worse immediately after taking heir tablets? Plan their activities around those times.
Sleep: Encourage a regular sleeping pattern. Some people may also need a regular nap – or two – during the day.
Fitness: Your family member should maintain fitness within their individual ability, that is, enough exercise to stay fit, but never to the point of causing tension, overtiredness or cramps.
Weight: Maintaining a healthy weight helps. If your family member’s condition affects their ability to eat, consult a dietician and speech pathologist to ensure they have a nutritious diet that is easy to manage.
Weather: Hot weather can also increase fatigue. Plan around this.
Seek support: Ask for advice. In particular, an occupational therapist can visit your home and advise on an energy – conserving plan.

For more information, talk to your doctor or condition – specific support organisation.

Thank you to The Brain Injury Association of Queensland for the article in Synapse Bridge Magazine the official journal of BIAQ. This article was first reproduced with the permission of BrainLink, from their excellent brain injury resource available for free download www.brainlink.org.au.

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