One day in October 1998, I had difficulty coming out of bed. That year had been pretty busy, with two big performance projects, building a house and my different jobs as a dance teacher. In the spring, I was pretty tired and sometimes wished I could take time off, but that didn’t worry me.
When I later got really unwell, I couldn’t keep my balance and had to hold on to the wall for support. I was also extremely tired. I entered into a period of extreme fatigue, muscle cramps and fasciculations, extreme night sweats, and proprioceptive and cognitive malfunctioning (brain fog). My blood sugar was generally low and sometimes very low, causing me to faint. I lost weight and became constantly alert on eating enough to keep at least a healthy minimum of flesh on my bones. Also, when exercising my body went into a state of hypertension and my immune system reacted in various ways, one of which was recurring herpes zoster. I experienced the symptoms as mainly neuro-muscular.
Without much testing, my family doctor came forward with the idea this was chronic fatigue syndrome (ME/CVS) and he advised against seeking help from a specialist at the hospital, because they wouldn’t find anything and it would just be frustrating.
Over the next 22 years, my health and functioning fluctuated. I saw a neurologist, a cardiologist and my general practitioner. No one found anything alarming and I was sent to see psychologists on more than one occasion. A constant was always the ongoing muscle pains and cramps and the post-exertion malaises, which took a turn for the worse in mid-2016, after a few modest hikes in the Alps. Also a new symptom came on: panic attacks; mostly at night and generally unrelated to my state of mind. I then sought help from a specialist in ME/CVS. He diagnosed chronic Lyme disease, that he treated with antibiotics and disulfiram.
After the disulfiram treatment I got gradually worse. My muscles ached all the time and any movement caused extreme fatigue and fasciculations. I experienced heart palpitations, anxiety and more weight loss. My blood sugar continued to be unstable. In November 2020, I had gotten so bad I couldn’t stand up longer than a few minutes and I ended up on the emergency ward with a dangerously low serum potassium. This led to meeting a consultant who was willing and capable to look further. She first thought of Gitelman’s diesase. Tests for that were negative. By some chance (a colleague had followed a course on primary aldosteronism, or “PA”), she ordered an ARR test and from there on it was pretty straight to the salt-loading test, and the CT scan, and then the diagnosis of PA. The CT showed bilateral adenomas/hyperplasia. Assessment of the CT took a long time, and where I live there is an extremely long waiting list for AVS, which is done only when the CT results point to the possibility of a surgical cure. I have been referred to a more specialized hospital and I am now awaiting AVS and hopefully surgery there. I did not have any genetic testing, but both of my parents have had heart attacks.
All through the time from my first visit to the ER and the diagnosis, which was a year, I took ± 60 mmol of potassium chloride daily. This was the first time in many years that the muscle pains got considerably less bad and I was able to build up a tiny bit of strength. The tiredness hasn’t subsided (yet), brain fog comes and goes with the tiredness.
Since the CT scan and diagnosis, I have been taking spironolactone (50 mg/day) for three months now. I don’t respond well to it. It increases the muscle cramps so after the AVS I will switch to eplerenone. My blood sugar seems a lot better and I have put on quite a bit of weight. Monitoring is done through regular potassium, sodium, and creatinine testing. I am not taking any potassium supplements now, but I am on a low sodium diet.
As I am between the diagnosis and AVS test, and possible surgery (I will provide another update after my AVS testing is completed), I am now taking time to reflect. The impact of having lived for 23 years without a proper diagnosis and with huge resistance when seeking help is enormous. Physically obviously, but mentally and emotionally just as much. I was a professional dancer and taught in higher dance education around the world. And I knew and trusted my body. I lost not only my job but the thing I loved doing most, my language in the world. I lived with and within a body I couldn’t trust to do what I wanted or needed. Psychologists repeatedly offered the suggestion of a hidden trauma or pattern of ‘thinking myself tired’ thus implying I was responsible somehow for the pain. So, my mindset became one of being ‘guilty’ and having to solve this with diligence and therapy. I tried hard and harder without physical success. All this therapy did also do me some good and I found ground in being a human being without any achievements to please my ego. I managed to retrain (as a Cranio-sacral therapist) and work a little bit. I am still a wife, mother, and friend. In the past year and a half, I have consulted with two specialists who not only seek answers and treatment but approach me as a knowledgeable human being, and acknowledge the impact of this process on my mind and psyche. They both listen and give me control of the process wherever possible. Their attitude made me realize my body isn’t the only thing to heal. My relation to the medical world also needs to heal, as does my mindset towards physical challenges and, last but not least, my soul.