Updated: Apr 23, 2020
"Fibromyalgia affects 2-4 % of the population and has no known cure” https://www.sciencedaily.com/releases/2019/06/190620100043.htm
Unfortunately, fibromyalgia is a painful chronic condition or disorder that has no known point of origin or cure. Essentially, treatment involves a juggling act of managing symptoms, reducing or preventing flares, and pain control. Also, an important factor in the juggling act that is often neglected is self-monitoring. Self-monitoring involves the internal observations of one’s symptoms, pain level, energy and fatigue and being aware of one’s condition at all times, despite the current activity. In my opinion, self-monitoring is very important in maintaining one’s pain level. However, I have difficulty in staying tuned to my current status as I often get engrossed in my activities. This leads to me overdoing it and pushing myself into a pain state that is difficult to bring under control easily.
Personally, I find that prior preparation and planning that involves forethought must occur before any large activity or task that I am considering doing. This forethought involves what I refer to as the energy equals pain formula, “if I do this activity this x amount of energy I will need equals y amount of pain later. My problem and the reason why self-monitoring is so difficult for me is that my energy level is hard to determine because my fatigue can instantly smother me. Then, I can do something and feel the pain hit me after the activity pretty severely. So much for planning, now I am planning to take a nap!
Similarly, and more eloquently Christine Miserandino coined the phrase “fibromyalgia spoon theory”, to describe the issue of conserving energy by equating energy into units of spoons. https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#1
Miserandino utilized the spoon theory in an effort to illustrate what coping with a chronic illness is like on a daily basis. For example, consider that you are suffering from an invisible chronic illness when you start the day you have a set allotment of spoons, each activity costs a certain amount of spoons. As you go through the day you use so many spoons with every task. You can only do so much until you have no spoons left. When you have no spoons left you have no energy and your body experiences more pain if you demand more activities than spoons will allow you to do.
Christine Miserandino was diagnosed with Lupus, which is an autoimmune disease that is very similar to fibromyalgia, so much so, it is often very difficult for physicians to distinguish between the two in terms of diagnosis. The spoon theory is a very popular concept in the invisible illness world, so much so it led to the reference “spoonie” being adopted by those who are diagnosed with similar illnesses. https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#2 It is easier to think about having a battery life that is rechargeable, but your battery never charges well enough! Miserandino wrote an article “But you don’t look sick” about the spoon theory, which you can download here for free if you like https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf.
Fibromyalgia may not be able to be curable at this time. However, there are several treatments available in combination with self-care, and self-monitoring, designed to work holistically. Essentially, by treating symptoms, such as minimizing pain, quelling nausea, and alleviate fatigue. Self-monitoring and mindfulness are essential in enhancing and maintaining a better quality of life for those with fibromyalgia. This was confirmed through a United Kingdom beta project “Fibromyalgia Self-Management Education Group Program”. https://doi.org/10.1093/rheumatology/kez106.051.This program was delivered by occupational therapists who provided a detailed self-management educational program delivered to individuals who were diagnosed with fibromyalgia over the course of six weeks with a 2.5 hour information session. The syllabus for this program involved training and education in the following aspects:
Dealing with cognition issues
The study concluded that the participants found that the program was “highly acceptable and beneficial”https://academic.oup.com/rheumatology/article/58/Supplement_3/kez106.051/5444527. The patients further reported that families of those diagnosed with fibromyalgia and physicians would also benefit from the training.
Personally, I will be undertaking some training in self regulating and or self monitoring, when I do I will let you all know how it goes. I am currently researching any providers for training for fibro. fighters. IF anyone has any information they would like to share, please send me an email or comment. I would appreciate it.
In the next blog Part 3 Medication and Treatment , we will be discussing medication for fibromyalgia. Stay in touch with my disorder’ ed life…