What is Fatigue?
Article by Khal Sadiq.
Fatigue is a personal experience that is different for everyone. For some it may feel like overwhelming tiredness, which makes them unable to complete normal activities of daily living.
People may say they feel exhausted, lacking in energy, weak, unable to motivate themselves, or sleepy. For others it may worsen difficulties associated with their injury, for example, forgetfulness, irritability, slurred speech, distractibility or dizziness.
Fatigue often makes resuming previous roles and daily activities more difficult and can contribute to people becoming socially isolated.
Therefore, fatigue may affect:
- what we think (for example, “I shouldn’t feel like this, I’m useless”)
- how we feel (for example, frustrated, unable to cope, irritable)
- what we do (for example, avoiding activities, or increasing effort)
I have had bouts of fatigue on/off for over 10 years, primarily physical fatigue and since my TBI I’ve discovered a new level of fatigue.
The underlying causes for fatigue following brain injury are still poorly understood, but many people experience fatigue.
I am having bouts of insomnia on top of everything else, this leads me onto mental fatigue which is different to physical. Trying to explain this to people has been challenging as not everyone gets it, that too can be exhausting. My energy levels diminish very quickly as we are using more of the brain.
Neuro-fatigue, as I have discovered is a debilitating consequence of a brain injury as it affects everything we do, both physically and mentally.
I realised quite soon that I wasn’t the same person after surgery and was doing all I could to get back to then. Despite putting all my strategies into place, it wasn’t working, and I knew I had changed.
At first, I was trying everything to try and push my recovery so that I would overcome the fatigue. But I realised that all the strategies I had learnt before in coping, pacing myself I was not doing and become angry at the fact I knew what to do but wasn’t doing it. It takes time to build up your energy levels and that pacing is vital in order to build stamina. So, taking breaks between tasks is essential.
Signals that the battery is running low
At some point during the day a brain injured person may get noticeable signals that their battery is running low.
Signs of fatigue can be, a tense look, a pale or greyish pallor, glazed eyes, irritability and, ironically, too much activity. (the person may become restless, more distracted or more talkative and make an increased number of mistakes.) For example, I notice that I am tired, making more mistakes or losing concentration. These are all signs that let you know that the bottom of the battery is in sight. It's time to take a rest so that the battery can charge again.
My new baseline = knackered
Fatigue is part and parcel of most brain injuries, so my constant tiredness is something I have come to expect.
Oh yes, I have Familial Mediterranean Fever
Familial Mediterranean Fever is not something you catch off a Greek cruise.
Familial Mediterranean fever (FMF) is considered a rare disease worldwide, it is an inherited condition characterised by episodes (flares) of painful inflammation of the abdominal lining (peritonitis); the lining surrounding the lungs (pleurisy); and the joints (arthralgia and occasionally arthritis). I take opioid medication for the worst flares.
Other symptoms that may occur include inflammation of the lining surrounding the heart (pericarditis), inflammation of the testis (orchitis), benign, recurrent inflammation of the membrane that surrounds the brain and spinal cord (meningitis), headaches and amyloidosis.
These flares are often accompanied by fever, and sometimes, a characteristic ankle rash. The first episode usually occurs during childhood or the teenage years. In some cases, the first episode occurs much later in life. Between episodes, people often do not have any symptoms. FMF usually is inherited in an autosomal recessive manner, caused by mutations in the MEFV gene. Treatment for FMF aims to control symptoms and often involves the use of a medication called colchicine. Without treatment, FMF can lead to kidney failure due to a build-up of certain protein deposits (amyloidosis).
Has TBI affected my pain threshold and FMF?
I have had several flares, since my MVD and I have found the pain worse than I remembered. Doing basic things around the house I found exhausting and severely painful. I was not able to exercise; my sleep pattern was terrible, and I was constantly exhausted from doing nothing.
I followed up with my G.P and he looked at the bigger picture of why I was always fatigued. My G.P. ran a few different things at the same time. We did a sleep study to ensure my fatigue was not related to sleep apnoea that was all good, but my quality and quantity of sleep was poor.
My bloods were normal, apart form my Vitamin D which was not existent. Vitamin D is an extremely important vitamin that has powerful effects on several systems throughout your body.
8 signs of possible vitamin D deficiency:
- Getting Sick or Infected
- Often Fatigue and Tiredness
- Bone and Back Pain
- Impaired Wound Healing
- Bone Loss
- Hair Loss
- Muscle Pain
The bottom line…………
Vitamin D deficiency is incredibly common, and most people are unaware of it. That is because the symptoms are often subtle and non-specific, Fortunately, a vitamin D deficiency is usually easy to fix.
You can either increase your sun exposure, eat more vitamin-D-rich foods, such as fatty fish or fortified dairy products. Fixing your deficiency is simple, easy and can have big benefits for your health. So, my fix was easy, I started taking a high dose supplement of Vitamin D and saw improvements.
My G.P advised that fatigue is common and can be disabling for people with TBI, My G.P concluded my TBI had affected my pain threshold and that my fatigue was related to both my FMF and TBI. I was trying too hard and doing too much to get back to the old me and was getting overloaded, thus resulting in mental fatigue and flares causing chronic pain.
I found that fatigue can just spring up on you for no reason even when you are not doing anything physical. My mental fatigue was adding to my physical fatigue. From my past pain management programs, I have learnt strategies of how to cope, pace and manage and then after my TBI did not implement them as I thought they wouldn’t work in this case. I was wrong.
I have read that people with chronic pain are at substantially increased risk of depression, anxiety, physical de-conditioning, poor self-esteem, social isolation and relationship breakdown.
Their reduced physical function and mobility can lead to loss of independence, and they may not be diagnosed and treated for social anxieties that may have contributed to, or result from, their condition.
I try diligently to use these “skills” in order to reduce my pain, manage my fatigue and improve my quality of life.
About Khal Sadiq
The author of this honest, revealing article, Khal Sadiq, is a survivor of brain surgery. He has a reputation for being too witty for his own good, but is always one to rely on for a job well done. He uses speed and strength of character to get results. Khal is a big fan of Arsenal, but not so much of broccoli.