There is the expression about walking in someone else's shoes for a day. A research article by Shippee prompted me to think about the lives of clients and patients living with chronic pain. With chronic pain conditions like fibromyalgia, IBS, back, knee or shoulder pain life can, understandably, develop into a constant search for pain relief. But this can cause disruption in other areas of their lives, as this article explores.
The Complex Nature of Fibromyalgia Treatment - No Time for Life
Some time ago I gave a presentation to a fibromyalgia support group. As part of my presentation I offered to spend some time with members of the group, all had fibromyalgia from more than one year.
The comment of one person from the group stood out and gave me pause for thought.
"I'd love to have some of your kinesiology treatment, but I don't have the time".
She proceeded to detail the appointments for her chronic pain treatment each week. She didn't have any free days - sometimes she could have two appointments about her fibromyalgia in one day.
I was stunned. I'm sure I'd get exhausted going to all those appointments and I don't have fibromyalgia that has fatigue has one of its symptoms.
What's involved in having chronic pain treatment?
Ø time taken to travel all the various clinicians or groups,
Ø the effort to get ready,
Ø listening to all the instructions,
Ø listening to all the information from various clinicians (with "fibro fog"),
Ø how to put any self-care suggestions into effect,
Ø the energy needed for a patient just to be present,
Ø let alone be involved in treatment.
I don't know about you, but I know if I didn't feel well I'm not too good at communicating, thinking or remembering?
Therefore the question to consider, is fibromyalgia treatments really helping?
I think we would all agree, yes it's really important to have treatment for your chronic pain to find ways to improve not just your pain but to make your life easier and happier?
But to do endless treatments as this person has to live with?
Is this something we should, as practitioners, clinicians and doctors be taking into consideration?
Three Important Definitions Concerning Chronic Pain Treatment.
Firstly, Patient Workload.
As in my fibromyalgia story above, patients' time and energy, with treatments, including taking medications, self-care and life in general outside treatment, such as family and work and social responsibility constitute patient workload. All of which happen in life regardless of our health.
Secondly, Patient Capacity.
This is really the ability of a patient to not just handle, but also understand all the implications and information they are presented with, to be able to afford financially and have social support. Most important is their medical literacy, patient attitudes and beliefs.
Thirdly, Cumulative Complexity.
Balancing these two; the patient workload - how much they're expected to do and, the patient capacity - their ability to put into action the advice and treatment and medication they are given. Therefore the ability of a patient, the person actually having chronic pain, to balance treatment and life can be challenging, often worsening over time. Or as my fibromyalgia person said, adding one more treatment - however promising - would add more complexity to the already "burden of fibromyalgia".
"To those people who have fibromyalgia or clinicians treating fibromyalgia patients what we need to do is to see if we can understand the complexity from their point of view."
Many of us say that we are leading incredibly busy lives and getting stressed and anxious but in comparison we are fit and healthy. It would be difficult to walk in their shoes!
This diagram from Shipee shows changes over time as everything, not just their chronic pain but more recently, with any other chronic diseases.
Other Chronic Health Issues Add to Chronic Pain Problems
Many areas of this website repeat the message that the number of people living with chronic pain is increasing. In fact it's starting to just be part of this patient workload. Many older people, say over 50, are also developing hypertension and diabetes that can lead to permanent chronic illness, polypharmacy (taking heaps of medications) together with social and work responsibilities.
Also from my more recent experience, the amount of anxiety people are suffering is also growing. Again often treated with medicines such as antidepressants and sleeping tablets.
We need to begin recognising, we being medical, ancillary and complimentary therapists, that general health by means of lifestyle factors must be included in treatment protocols. In fact shouldn't they be the very first line of treatment?
These pictures show how well tomatoes can grown if they are given good nutrition, water, staked and cared for, unlike the failed crop where we didn't get any vegetables to eat. This illustrates the importance of good nutrition to us as humans. Good nutrition can keep us well and healthy and prevent illness.
The First Step to Health and Wellness to Reduce Chronic Pain
Healthier lifestyle, or lack of good nutrition and movement can be one of the reasons for chronic pain developing in the first place. Therefore it is likely, in an effort to reduce complexity of their lives, patients will turn to quick easy food and no movement.
"Fast Food and Little Movement is Becoming the Popular Lifestyle "
But lifestyle is key to making changes - the first step to health and wellness.
I found this intriguing rehab suggestion online, by a hip or knee replacement surgeon. He explains the necessary rehab needed after surgery.
Ø As soon as possible walk for 20 minutes, twice a day.
Ø Increase that to 30 minutes, twice a day.
Ø Continue to increase to walking about two hours a day.
This, even for me who enjoys walking, is a lot to do! And I would suggest that after the immediate acute pain has receded rarely do patients have the "capacity" to just focus on such a rehab "workload"
As with many of my articles, they are here to inform. At the same time they generally provide more questions than answers.
Consideration of Patient Workload and Patient Capacity by Chronic Pain Specialists
To pain clinicians:
"We have to get a worldview - that's to look outside our own specialties."
Ø See the patient’s perspective.
Ø Always check their workload.
Ø Always assess their capacity.
The latter two can be more important than assessing their range of movement or pain levels. As clinicians we can help balance a patient's workload and their capacity and begin to reduce or turn around the cumulative complexity, that patient feel and experience but don't know what to do about it - except react in a unhelpful manner.
To chronic pain patients:
If you are patient with chronic pain you need to be forthright or make sure that doctors are actually listening to your life, both the workload of illness you have, and your ability to follow or understand their treatments.
Finally think about your lifestyle and what you can do to be more healthy start with something small.
Natural Pain Solutions Provides Self-Help Skills for Pain Relief
References
Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a
functional, patient-centred model of patient complexity can improve research and
practice. J Clinic Epidemiol. 2012 Oct,65(10):1041-51.
Jean Jordan
Want to find simple effective ways to reduce your chronic pain without increasing your stress and overwhelm? This is where I can help! Ideas can be found in the articles on my website. You can sign-up to regular updates or spend time using some of the collection of self-help techniques. After over 20 years of having my own pain clinics pain clinics I started natural pain solutions to reach more people, rather than one person at a time. Therefore when I completed my postgraduate pain management studies I wanted to spread the word about holistic self-help techniques that people can use at home. Learn more about me here.