I am very much behind with my content, especially here on my blog. I have been updating about my progress with my chronic fatigue (or Fred, as I affectionately call it!) over on my YouTube channel. Today though, I thought I might do a summary blog post of all that has happened since I last updated.
Since my last blog about searching for answers for my chronic fatigue, there has been a lot of positive progress. Importantly, I managed to get a face-to-face appointment with my new GP here in Devon. I did what you kind folx suggested, and wrote a document, summarising what has been happening with my health. I sent this ahead of my appointment and also took it with me. My new GP contacted me to say he was grateful for the additional info. He also advised that he would make our appointment a double appointment, to give us adequate time to talk.
Discussing My Chronic Fatigue with My GP
I met with my new GP on the 1st of October last year (2021). I was nervous because so far my experiences getting help with my unexplained chronic fatigue and health issues have not been positive. When health care professionals find nothing wrong with you, it leads you to question yourself. It is also incredibly frustrating when so many health care professionals use my mental health history or my being transgender as an explanation for my ill-health and chronic fatigue.
My new GP is a much-needed breath of fresh air, it is a relief to say. In our appointment, it was clear from his thorough and useful explanations, that he was taking my symptoms seriously.
I found his knowledge of the nervous system really insightful, he spent lots of time explaining how the nervous system works and how it can get overloaded and cause chronic fatigue. This is the first time in a long time, that I have felt truly heard and understood.
A Provisional Diagnosis of ME/CFS
After a lengthy conversation, my GP told me what I had been fearful of hearing. What I am experiencing could well be Myalgic Encephalomyelitis or chronic fatigue syndrome (ME/CFS). Many of my symptoms, the way they present, and the length of time they have been presenting, all point to ME/CFS.
My GP also reassured me that it was extremely doubtful that my hypothyroidism was causing my ongoing ill-health. I have had my thyroid hormones thoroughly investigated. However, he said he wanted to run some more tests, just to double check.
My GP recommended a ton of other blood tests, repeating some I’d had done previously, as well as new ones. He also agreed that my most worrying symptoms, my heart pounding, and palpitations, needed extra investigation, especially with my family history. My mum had angina and other heart problems which contributed to her death, and my dad died from an inherited type of cardiomyopathy.
More Tests to Rule Out Underlying Causes For Chronic Fatigue
The following months have been full of various tests. I have had a full fatigue blood panel, Lyme disease tests, more thyroid hormone tests, cortisol checks, you name it, it’s been checked! A 24-hour urine test has also been done, as well as a 24-hour blood pressure monitor test.
I do have hypothyroidism, but the tests have confirmed it is managed and stable with levothyroxine, and there is no secondary issue affecting it or my health. The blood pressure test showed I have high blood pressure, and I am now on medication for that. Other than that, everything else has come back negative.
Most recently, I had an ECG and a 7-day heart monitor test. The results showed that I do have ectopic beats and that my heart rate is high. Neither of these is a concern, but it feels good to have this validated as not being my imagination! The results were followed up with a heart echo, to check the structures of my heart. This test also came back clear, showing my heart as healthy. I will now be screened a few times a year, mainly because there is a possibility of inheriting my dad’s type of cardiomyopathy.
Finding No Explanation for my Chronic Fatigue In My Test Results
It is a strange feeling, to have all these tests come back negative. Normally, of course, this would be a good thing. However, what this means is that my GP is right about the fact that all my symptoms are caused by ME/CFS. With there being no cure for ME/CFS, and the prognosis being very hit and miss, something being wrong that could have been fixed, would have been preferable. Acceptance of the fact that I have a serious, long-term disability, is a work in progress for me.
Next Steps
The next step now is to get an official diagnosis and find ways to manage my chronic fatigue and other symptoms. I am not sure who gives the official diagnosis, whether it’s my GP or an ME/CFS specialist. We do have an ME/CFS service nearby, so I’m presuming my GP will refer me there. I hope this is the case because I really would like some support with the physical, practical, and psychological elements of this illness.
I’m hoping that expert knowledge and advice may help me to better manage my symptoms. I also need some help to work through the ton of fear and sadness that this illness is bringing up.  I am currently trying to get a follow-up appointment with my GP to discuss all of this. However, like those in the UK will know, getting a GP appointment these days is like winning the lottery.
Learning to Manage My ME/CFS Symptoms
In the meantime, I have been learning everything I can about ME/CFS. In the last 4 months since seeing my GP, I have done a ton of research. I have connected with some wonderful support groups on Facebook, and begun to make sense of this illness. I’ve also been experimenting with techniques to manage my chronic fatigue, such as pacing.
I have also been making enormous changes to the way I live my life, to allow me the rest I need. This has not been an easy adjustment. I am incredibly ambitious and driven, and I have, I realize now, a tendency to do too much!
In a recent video, I spoke about reading, Laziness Does Not Exist by Dr. Devon Price. This incredible book has completely changed the way I view my productivity. It has also helped me to accept the need to slow down and have a desire to do so.
Understanding The Causes of ME/CFS
I have also been exploring theories as to what causes ME/CFS and reflecting on why this might have happened to me.
Thanks to another fantastic book Decode Your Fatigue by Alex Howard, I’m coming to realize that I have underestimated the effect of all I have been through in my life. I have been so focused on managing and improving my mental health, that I neglected the impact of psychological trauma on my body.
More Chronic Illness Updates and Reflections Coming Soon!
I want to talk about all these things individually, these helpful books, my experiments with pacing, and my reflections on the role of trauma, in another blog. There is much to be said and many more reflections and realizations happening every day and these deserve a dedicated blog. I’ve made a start on those, and I will have them uploaded as soon as possible.
A huge thank you to everyone who has sent recommendations, suggestions, experiences, and kind words, you have helped so much, and it is good to not feel alone!
Hello! My name is Finn and I have a passion for creating honest content, that inspires personal growth and promotes well-being.
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[…] I mentioned in my previous blog update, I have now had all of the tests needed to rule out other conditions. All of those tests have come […]