Managing fatigue following spinal cord injury

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By Jennifer Pisarek

This is a summary of a paper published by researchers from the Department of Occupational Science and Therapy, ICORD, and the British Columbia Paraplegic Association from Vancouver, Canada in the journal Disability and Rehabilitation. Original article: Hammel et al. (2009). Managing fatigue following spinal cord injury: a qualitative exploration. Disability and Rehabilitation, 31(17), 1437-1445.

Fatigue is a common and tiresome obstacle for individuals with spinal cord injuries. It is much more than just a physical condition; fatigue can have a significant impact on the emotional and mental state as well. Clearly, fatigue has negative implications on quality of life, happiness and general well-being. In the case of patients with SCI, fatigue is a problem that may not resolve over time and may in fact become worse. A fatigue management program can help individuals cope.

This paper investigates the contributors to fatigue following spinal cord injury, as well as identifying the ideal components of a fatigue management program and the factors that determine its success.

What was the most important finding?

Researchers found many ways to address the multidimensional nature of fatigue in SCI. To help with the physical aspect of fatigue, strategies to enhance efficiency and decreased energy expenditure were beneficial. These often included modifying daily activities in keeping with capabilities, incorporating additional rest, ensuring adequate nutritional intake, and increasing the use of assistive equipment. For the emotional and mental component of fatigue, the study found that developing greater understanding and acceptance of capabilities and limitations was helpful, and maintaining participation in meaningful and rewarding activities was equally beneficial.

Successful fatigue management programmes were found to increase the quality of life for people with SCI. The programs helped individuals accomplish their priorities, provided an enhanced sense of control and motivation, reduced pain and helplessness, and enhanced personal relationships strained by fatigue.

What are some things we need to consider?

The investigation used focus groups to produce descriptive data, obtaining results by collectively interviewing groups of individuals. While this type of research is efficient in exploring a relatively unknown field, its findings are not conclusive and cannot be used to make firm generalizations about the population of interest. Therefore, further research is needed to quantify the information discovered in this study, to recommend a final course of action in fatigue management.

What does this mean for people with SCI?

By implementing some of the strategies suggested by this study, people with SCI may be able to manage their fatigue more effectively. Through addressing this issue and helping to improve their health and well-being, individuals will be able to reap many positive benefits such as an increased sense of control and quality of life.

Posted in Adaptation, fatigue, Research Studies, SCI | Tagged , ,

12 thoughts on “Managing fatigue following spinal cord injury

  1. I have Transverse Myelitis and fatigue is a major result. I would like to know the cause of the fatigue. I appreciate that the above article focuses on coping but why is fatigue more prevalent in spinal chord injuries?

    • Hi Dave, thanks for your comment. We asked Dr. Susan Forwell (one of the authors of the paper) to reply to your question:

      Thank you for your question about fatigue. Sometimes the cause of fatigue is very clear when there is infection or a trauma. And this can happen to people with and without spinal cord injuries. People who have a spinal cord injury have a number of other issues that may contribute to the overall fatigue experience. For example: night time sleep may be disturbed and there may for increased difficulty getting a deep good quality sleep; if experiencing depression, fatigue is a well-known symptom; infections such of urinary tract infections can magnify fatigue; and using extra energy to get around may all contribute to fatigue. There are other things that are not well understood but may also contribute to fatigue including autonomic dysreflexia, spasticity, stress, and anxiety. We don’t have all the answers about fatigue in spinal cord injuries but we continue to work on it and recognize that it is an important issues for those that have fatigue.
      Susan Forwell, PhD, OT(C), FCAOT
      Associate Professor

      You may also be interested in this other paper on the same topic:
      Hammell, K.W., Miller, W., Forwell, S.J., Forman, B & Jacobson, B. Fatigue and spinal cord injury: a qualitative analysis. Spinal Cord. 47(1) 2009: 44-49.

      • I’ve been living with spinal cord injury for 36 years and I’m now in my 50s. I think the fatigue has many layers to it. For post-menopausal SCI women such as myself, you have several contributing factors going on at once; hormonal changes, loss of muscle strength (so important to an SCI person’s independence), bone density decline and the potential for osteoarthritis. And this is on top of still having to put your body through something it has not evolved to do – cope with everyday activities (physically, psychologically and emotionally) with only a fraction (to a greater or lesser extent) of the resources available to the non-disabled person. Age + disability has, I think, a greater impact on fatigue levels than one would imagine if looked at separately

        • I agree with Libby Webber! I have been living with my SCI for 46 years and have been extremely active most of my life; however, ten years ago things started to change as fatigue became an increasing problem. I was in sports at a high level, I worked at various jobs since I was 16 years old and my current employment for 26 years. I am married with one son, we own our home and have a cottage. I believe I am a hyperactive person.
          There is little to no info on women with SCI, age & fatigue, post-menopausal. I agree that fatigue has layers. I don’t suffer all the time but it’s depressing as I haven’t found any real solution only evidence this requires more research.

  2. I had a SCI, a spinal contusion, and am very blessed to be walking and living a pretty close to normal life now 2 1/2 years after….I am trying to live as active and healthy lifestyle as possible but I am really frustrated with the fact that with only very light physical activity over a short period of time that it takes me on average 4 days to recover from it. Do you have any suggestions other than mentioned above on coping and improving my energy levels and recovery time from workouts. I am open to ANY suggestions, be they medicinal, herbal, therapeutic, lifestyle, dietary or any other means. Thank you for your time.

    • Hi Darrin,
      Here is a response from Dr. Susan Forwell:

      Very pleased that you are getting on with things and leading an active, healthy life. After such a trauma, this is sometimes very hard to do.
      I understand your frustration with limited energy and that this gets in the way of even minimal physical activity. As you might suspect, ‘the what to do?’ is not straight-forward and has many facets to consider.
      The first thing you want to do is check that there is no other condition that may be causing your limited energy like low iron, poor sleep, depression and anxiety, for example. There are lots of things that can zap energy, so it is advisable to consult your family doctor about this. If there does not seem to be any other issues, then check your medications. It is possible that some medications that you might be taking have side-effects that cause day-time sleepiness or drowsiness. Your pharmacist can help you assess this. Once this is taken care of, and you still have fatigue you should consult your occupational therapist who will be able to provide you with a number of strategies related to conserving energy, being ergonomically efficient, and doing an analysis of your rest-activity expenditure.
      I hope some of these suggestions are helpful and allow to you to continue to live a healthy active life.

  3. Hi everyone. I do not have a spinal cord injury but I do have arthrogryposis and autoimmune psoriatic spondylitis. Fatigue has been a daily issue for me. It’s an overwhelming exhaustion that is multi factorial….I have learned to somewhat adapt but one of the most frustrating aspects of this type of fatigue is that friends and family typically do not understand and, because of that, it puts more stress on me because I feel like I have to either push through the fatigue and/or appear as “normal” as possible even though I am completely exhausted. The Spoon Theory (google it) is a wonderful way of explaining to friends and family exactly what you experience daily. I encourage anyone to google it and use it to illustrate your daily fatigue.

    Some things that help me deal with fatigue —
    1) frequent naps .. It helps me to pace myself throughout the day. There are days I can sleep for 24 hours (no joke) and there are days my naps consist of just resting my body and reading a magazine; 2) if I know I have a busy day ahead of me (and my version of busy sometimes is just a doctor appointment) I can guarantee some level of fatigue will occur and I need to prepare for that……I won’t be making dinner by myself that night or I won’t make plans with someone knowing the likelihood of keeping them is has been compromised by my “busy” day…In other words, I will never tell a friend I will meet her for lunch after I’ve been sitting in a doctor’s office for two hours that morning, etc. I try to avoid telling people I have to cancel due to fatigue. 3) adderall…my doc put me on this amphetamine and I will say it helps here and there. I try not to become dependent on it and use it for days I know will be long.

    I’m sorry those of us who deal with fatigue are doing so but there are ways of adapting and you just need to find what works for you. I start my day with a certain number of “spoons” and I try to not spend more spoons than I have.

  4. Hi I have Sci L1 from burst fracture and cauda equine syndrome I can walk and live a fairly busy life but I get extremely achy and tired when driving for ant extended period and moving things like fridges etc my legs are really weak and backs of thighs ache even after a nights sleep in the morning I find it difficult and tiring to walk around the house even
    My right calf is atrophied and I have numb backside with no muscle tone when lying on back in bed I have aching sensation in backside so have difficulty starting to sleep I also use catheters and practice manual evacuation

  5. Hey guys,
    My husband has a T4 ASIA D sci that’s 370 days old. Can fatigue cause light bladder leakage? He self-cathetirizes (<- never typed that word before!). I'm trying to find patterns in his bladder leakage, that is, for example, does it leak when he is fatigued etc.

  6. Hi I had spinal cord surgery on my neck
    I’ve improved every day by going back to the gym
    My muscles are stronger apart from legs which are always tired and heavy
    I am finding excessive day time sleepiness the most problematic at present
    Also after being asleep at night it’s as though the nerves havnt been stimulated in sleep

    The best I feel is working out at the gym

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