How many symptoms does a person who suffers from Myalgic Encephalomyelitis /Chronic Fatigue Syndrome have? Answer multiple by definition of diagnosis.
Do they change in severity? Do they ever alleviate? Do old symptoms return and new symptoms arrive? I bet the answer to most, if not all of these questions is YES, YES, YES!
When I first became unwell the only way I could make sense of all the various symptoms was to monitor them. I produced my own paper chart and evaluated the multiple complex symptoms I was experiencing. This was a way of separating what I was experiencing and to stop me from despair. No one else suggested this as I, like many others was very much on my own with regard to care and treatment.
Some of my symptoms back then included repeated episodes of Post Exertional Neuro-immune Exhaustion (PENE), the feeling of being poisoned, cognitive problems, muscle pain, dehydration, emotional liability (hormones) and the constant bone crushing exhaustion I felt from morning to night.
Most of the above symptoms have now departed, are controlled or are accepted for the time being. Life, I believe is not static and will always change, this philosophy is what I accept not that the current symptoms will be with me until the end. Through management techniques such as diet, activity, supplements, medication, stress reduction and mindful acceptance; I have found methods to apply on a daily basis with a commitment to do this until I regain good health.
A good approach to start to manage multiple symptoms is first to separate and divide these symptoms to find out their source. For example feeling poisoned may originate from the small intestine and a fermenting gut. Muscle pain may come from over activity, nutrient deficiency or dysfunction detoxification pathways. Cognitive problems may come from a compromised blood brain barrier, allergy or stress.
Once a person has identified the symptoms they can then apply techniques to manage them. At this stage I like to hone in on just two or three symptoms and monitor those I have chosen over a given time period.
It is whilst using this method that I found that my main health related ME/CFS symptoms dwell within the gut, the immune system and how I manage my activity. I have even found that I can do more activity than I once thought and this has been a revelation in terms of quality of life. Focusing on gut problems has allowed me to listen more to my body for advice, take information regarding nutrition and apply this advice to inform what I eat, don’t eat and when I eat.
The immune system is the most challenging area for me in regard to treatment. Many of the immune aspects of ME/CFS I also share with others who have ME/CFS. For example I do not have a functional innate immune response, I have an over responsive adaptive immune response and I do not suffer the same symptoms I once did when presented with a common cold or other trivial bugs.
Monitoring symptoms, in my opinion, is a must when dealing with chronic ill health. Listening to your body is not an easy task when it feels like a system overload. But with practice the body can afford us vital information and with our easy access to information we can often find remedies, treatments and cures to apply.
I no longer use a paper system and keep an electronic diary, which I helped develop. I use this system on monthly cycles concentrating on one or two areas until I am happy that I have the techniques to deal with each symptom. If someone had come along and said here take this white pill, it will cure you. I would not have learned a thing about listening to my body, nutrition, and acceptance or how to grow spiritually and emotionally.
I will continue to monitor symptoms and activity until I feel no need to do it. And in the future if something new should knock at the door I will have the skills to apply a method to learn from the signs and symptoms and apply solutions with patience.