If it still remains hard for the general medical profession to agree on what ME/CFS is, then how are we supposed to comprehend it when we have it ourselves. Furthermore, if we are the one experiencing the horrid, life altering experience, then how are those around us to understand our experience, or find ways to help.
This is why, in my opinion, it makes having this illness / condition / experience, or however you wish to frame it, a real tough situation to tackle, because there is just so much ambiguity, and even, in some cases, denial and judgement about the seriousness and reality of the actual bodily experience. This can and often does, lead to worsening cases of it when diagnosis is not swift, as in my case, and when information and support is not available at the outset. This lack of firm recognition can lead to further denial of the bodily experience, a tendency to, “battle on” and therefore, a deepening of the severity of ME/CFS and Fibromyalgia.
Action for M.E., a leading charity suggests: “Myalgic Encephalomyelitis (M.E.) is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems.
Defined by the World Health Organisation as neurological, M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.
Many people with M.E. experience persistent fatigue associated with what’s called post-exertional malaise (the body’s inability to recover after expending even small amounts of energy; sometimes also called ‘payback’) and chronic pain. However, M.E. is characterised by a range of additional symptoms.”
Of course, anyone who has had ME/CFS and Fibro, knows what it’s like, and probably feels that experiencing it first-hand for a day is likely the only way to best explain the magnitude of difficulty and disability it can cause. Throughout my journey I have felt it important to come to understand what it is, the cause, and why it’s happening. The main reason for my desire to know, is that this knowledge could only further aid my ability to get well again. Not everyone agrees on what ME/CFS is, as you soon come to recognise. In relation to various doctors I’ve seen, if they even happen to have some knowledge about the condition, end up having differing views on the matter!
However, after review of a few main theories, I can fit my symptoms into place and I have come to my own understandings of what I think is happening, which provides me with at least some control and the best strategy for recovery.
My feeling is always to aim for the best case scenario and I figure, even if I don’t quite reach my entire objective, I’ll know I’ve made the best attempt. This is how I view recovery, I believe full recovery is very possible. I must admit, it was hard to believe it when I was so unimaginably ill at the outset but I still had hope. As things become more and more improved, my belief in complete recovery just gets stronger each step of the way. Additionally, it helps that I have heard of it being done in many instances, as this is what I have chosen to surround myself with; exposure only to material of recovery stories, rather than negative defeatism.
I would say that in the beginning of my experience I would have said that ME/CFS and Fibromyalgia, was a neurological condition. It seems in lots of cases, as potentially with mine, there could have been damage to the central nervous system, (CNS) Hence the name, Myalgic Encephalomyelitis. However I don’t think it’s as simple as that. It may be the case, but there is more at play and although it’s clear that it largely affects the nervous system, it also causes abnormalities within the immune system, endocrine and cardiological systems. This is why, before I was diagnosed, I was sent round to nearly most of these hospital departments, without one conclusive diagnosis, although moderate signs in each camp that I had abnormalities.
Normally at the outset, after diagnosis or in the initial stages of ME/CFS you will want to research and become knowledgeable so you can start to help yourself. Reading about what the NHS has to say on the subject can be disheartening so I’d just skim enough to see what they are saying. Then you will come across specialists, GP’s in various countries, and various private clinics or alternative centres, who each have their idea, albeit, normally quite a similar idea about how to fix yourself.
What has seemed most relevant to me is the Hypothalamus / Adrenal Axis Irregularity Theory, teamed up with the Mitochondria Theory. For information on this you can look up, Dr. Smith and Dr. Mickel along with Dr Sarah Myhill, (for mitochondria) Her book is also a good read. I am sure that everyone’s case is slightly different and that is why you have to see what fits for you. What went wrong, may be one thing for you, or it could be a number of things. The road to healing, however, is often a much more of a similar process.
Additionally I like what Ashok Gupta, (of the Gupta Programme), is saying about the cause of ME/CFS. He suggests,
“There are so many different abnormalities in ME/CFS, which seem to point to the idea of a central abnormality which affects all systems in the body. I believe that the condition is caused by an abnormality in the brain, specifically around two brain structures, the “Amygdala” and the “Insula”.
He continues, “The Amygdala is the part of our brain that is responsible for the “fight or flight” response, or the stress response. It is also known as the response of the sympathetic nervous system to threats. It seems that this part of the brain gets stuck in a chronic state of hyper-arousal, quickly using up all the body’s store of energy. It also causes lots of secondary issues which contribute to a whole host of symptoms in the body such as brain fog, difficulty concentrating, muscle pain, and exhaustion.”
This explanation can be difficult for some suffers to accept, because of its correlations with the psychological domain. Although, it is widely given within mainstream healthcare and private clinics, that there is a co-morbid connection between anxiety and, or, depression, and ME/CFS and Fibro. This is potentially not the same as a pure case of anxiety and depression, not that this plays down the magnitude for people suffering with a mental health concern.
This theory can make it sound quite an easy situation to fix, although for those of us trying to recover, we know it is certainly not. However, in a recent talk I heard Mr Gupta giving, at the online, Abundant Energy Summit, he goes on to indicate that parts of the insula, including the limbic system can become damaged and inflamed because of this continual hyper-arousal. He suggests in most cases this can be reversible, which is good to know.
I believe, The Lightening Process, established by Phil Parker, also runs along a similar vein of thought, that there is a continual underlying stress response running. Alex Howard, of, The Optimum Health Clinic, whom I have also had the benefit of personal coaching with, equally suggests that there seems to be a maladative stress response which can play a major part in keeping up this chronic ill health experience.
In relation to my experience, although, in retrospect I had been becoming unwell for a period of months, there was a particular day when I remember just intuitively knowing that something had broken or damaged my nervous system. My eye balls were burning, along with a multitude of nasty neurological symptoms and an inability to calm myself down. I simply thought, “my nervous system has snapped”. I felt I had pushed myself way beyond what I felt was humanly possible for me. Yet I had responsibilities and things I had invested in so I felt I couldn’t just press the stop button. I wish I had, because no amount of, “soldiering on”, serves you or others in the long run.
I was reading up about nervous system disorders but sadly didn’t find out about ME/CFS and Fibro until I became quite considerably worse, another year and a half down the line. Ultimately my body called the shots in the end.
Back to the science bit. In relation to Fibromyalgia, you can be diagnosed with this as a stand alone case or in addition to ME/CFS. It’s often a subset to ME. See more information about this at the Diagnosis post. Generally the NHS suggests: “Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.”
I once read that true Fibromyalgia, is an allergy to adrenaline. When adrenaline runs through nerves that are tired and frayed, it causes pain, heat and burning. Maybe that is what is adding / causing the shaking so many of us experience after exercise, stress, and at night when the body is trying to restore.
I find the B12 and Magnesium supplements to be helpful with this. You can find out a little about the condition here.
It’s also common for people with ME/CFS to have POTS too. This is an occurence of an abnormal increase in heart rate after sitting or standing up. It typically causes dizziness, fainting, sweating and other symptoms.
I was tested through Cardiology for this, because I have suffered from abnormal heart rhythms at night and significantly increased heart rates on moving, although it’s intermittent. This failed to show up on the, “Tilt Test”, used to diagnose POTs. Although I did have a seizure, lucky me, which were more frequent in my initial stages. I later found out that if the body is particularly adrenal fatigued, (i.e. if the M.E. is severe, like mine was at the time, being largely bed bound), the heart can take more than the allotted twenty minutes to respond. Ironically, when my energy started to increase ever so slightly, I had more episodes of POTs.
Ella Woodward, at Deliciously Ella, where I get a lot of my awesomely healthy, yummy recipes, has also had POTs and as far as it seems has really moved into a winning circle with her health. Check out an informative website for POTs here.
Just remember, despite all of the jargon, the learning, the reading and the labels, which at some point seems necessary, you define your life and they way you perceive your reality can make the difference between peace or distress.