How I Got A Female Mystery Illness

It's perfectly normal that when you feel ill you go to see a doctor. And since doctors have to spend many years at university or medical school studying human ailments, you are entitled to fully expect a correct diagnosis of what exactly is wrong with you. However, as I now know very much to my own cost in suffering, it does not always work out that way.

It was sometime in March 2020, when I was working as a professional, live performance musician, that my whole world suddenly fell apart. I had spent the whole day resting so as to be fresh for my evening performance at a well-known local restaurant. At about seven-thirty it was time to leave my apartment and walk into town with my guitar strapped to my back.

Within ten minutes I had arrived at the location and set about getting myself organised. I set up my microphone stand and my amplifier, then I sat down on my small portable seat and plugged in my semi-accoustic guitar. It was time to begin my performance.

For the first fifteen minutes, it all went well. The audience was highly appreciative and gave me lots of appreciative applause. At this point, I decided to have a few minutes break, to stand up and stretch my arms and legs for the purpose of triggering blood circulation. What actually happened next left me totally dumbfounded.

As hard as I tried, I could not actually stand up. My body was firmly glued to my seat. I didn't feel any pain or discomfort, I just could not rise! My hips were totally devoid of any power. So I took off my guitar and placed it on the guitar stand on my left-hand side. Then I placed both of my hands palm down on the sides of the seat and with all my might I pushed my arms downwards. At the same time, I tried to use my body to rise. Ever so slowly, I felt myself move in an upwards direction. As I did so, what happened next shocked me.

I felt the most excruciating pain in my hips, lower back, knees, and shoulders. And it felt like all of my joints were very abrasively grinding in their movement. Once upright, the pain eased significantly and I walked a few paces in a small circle. After five minutes I sat back down and picked up my guitar to start playing again.

For the rest of the evening, every time I tried to stand up again, I had to go through the same performance of physical gymnastics and pain. All I knew was that something was radically wrong with my body. I just did not have a clue what it was.

When I got home the same thing happened when I sat down to eat, and later when I went to bed. At this point, I decided to go to see my doctor immediately the very next morning. When I woke up, I could hardly get out of bed to stand up and walk. By this time the pain was off the scale. And so as soon as I finished my breakfast I went to see my doctor.

My doctor was a middle-aged female, and as I walked into her office she looked in worse condition than I was. Before I could say a word she started to complain that she couldn't take much more of the job and was so tired of listening to all of her patients' complaints. Eventually, she let me speak.

After I told her what the symptoms were she just brushed it off as old age ailments and told me to go back home and take some Paracetamol (Tylenol).

Now I did not for one moment believe that this was just a case of some old age aches and pains, this felt like something more serious. However, I did exactly as she advised, unsurprisingly, all to no avail.

At this point, Covid was unleashed upon the whole world and the country went into lockdown. By Government order, nobody was allowed to leave their house except in the case of an emergency. And anybody who was seen outside was subject to immediate arrest and an instant fine of 600 euros.

Since the paracetamol was plainly not working, I once again made my way to my doctor's surgery and asked to see a doctor. The receptionist gave me an appointment and sent me upstairs to see a middle-aged, male doctor. When I explained my problem and how the paracetamol was not working, this doctor became very rude and aggressive with me. He told me in no uncertain terms that my problem was not an emergency and to get out before he called the police!

I went back downstairs and spoke with the receptionist about what had happened she advised me to make go back home and make a telephone appointment for the next day. So I creaked and groaned my way back home and as I did so I got stopped by the police who refused to listen to my reason for being out (a reason which was specifically allowed by the Government) and threatened me with arrest and a fine. He then let me go but followed me home to make sure that I did not disobey his order. Once home, I made that telephone call. I was given an appointment for the next day.

The very next morning, just before I set off for the doctor's surgery once more, I got a call to cancel my appointment. They told me to phone again the next day for a new appointment. I put the phone down and broke down and wept with the pain of the condition and the frustration of it all. It was a horrendous thing to get through, not least of all since I was all alone as my wife was back in her country, Japan, to be with her family.

Eventually, I got another appointment. When I went to the surgery, all masked up for fear of catching Covid, the receptionist kept me at the front door and ordered me to sit in the street and wait until the doctor arrived for work.

Now there was only one door to get in and out of the building, and the bench I had to sit on was right opposite it. Nobody else passed me to go in. Then suddenly, after half an hour of waiting, in great discomfort, the receptionist came back to the front door and told me I could go in and wait outside the doctor's room upstairs.

I sat outside that room, with the door closed, for about twenty minutes, waiting to see the doctor go in. Suddenly the door opened and I was called in. So he had in fact been in there all along. The fact of the matter was that he was afraid to see me due to Covid. I could actually see the fear written all over his aging face. He refused to let me all the way in or to sit down. He told me to keep my distance and demanded in an unfriendly tone what I wanted.

After hearing me out he prescribed a stronger painkiller, Tramadol, which he said was for terminally ill cancer patients in a great deal of pain. En route to the pharmacy, once again I was accosted by the police and threatened with arrest and a hefty fine.

Incredibly, even the Tramadol was only partly effective. In fact, I ended up taking Tramadol and Paracetamol! When I told my wife who I called on Skype, she was appalled. She told me that I must not take the tramadol as it had been misprescribed. Now I have to tell you, she does know quite a lot as she works in a private hospital with people with serious health problems. Anyway, my wife really did impress me with all of her next moves.

First, she asked me to tell her in great detail what my symptoms were. Then she rang off and came back ten minutes later telling me that I had something called PMR. She had simply entered my details into Google and came up with the answer. And Tramadol and Paracetamol were almost useless in treating the condition.

My wife's next move stunned me. She booked me on one of the last flights out of Spain to Tokyo via Germany. That cost a small fortune I can tell you. The trip almost did not happen as Germany closed its doors to foreigners even landing. However, as I was dis-embarking simply to get on another airplane to Japan, they allowed me to board the flight from Spain to Frankfurt.

Then, in Germany, the news came through that Japan had also closed its doors to foreigners. I was told that I could board the plane, but there was a very high chance I would be sent all the way back to Spain!

Finally, after landing in Tokyo, I had to go through six hours of tests and questioning before they would let me stay. Fortunately, as I was married to a Japanese national, I had the automatic right to enter the country. But I was told that I must not leave the airport for twenty four hours. This meant having to sleep in the front passenger seat of my wife's car, in the carpark. What was more was that I still had to go into three weeks of quarantine, staying at a local hotel. By the time my head hit the hotel room pillow, thirty or so hours later, I had been over sixty hours in chronic pain and without sleep!

Three weeks later, we left the hotel and went to live in a small apartment. Immediately my wife got me an appointment with a lovely doctor in Funabashi. As soon as this doctor saw me walk and try to sit he said "Just from seeing how you move, I would say you have got PMR and possibly GCA." A simple blood test proved that both he and my lovely wife were absolutely right in their diagnosis. The next thing he did really blew me away. He put me on a high dose of steroids and the effect was truly amazing. Within a matter of hours all of the pain finally, totally disappeared, as if it had never existed.

Of course, steroids can cause their own set of problems with side effects. For example, you can get what is called a 'Moonface.' Also, it can raise your blood sugar, which was what happened to me, and so I had to go on insulin injections to avoid diabetes. In time, I was stepped down with the steroids and I was put on a Japanese wonder drug called Actemera. That is a very expensive treatment, though the Japanese Government covers 70 percent of the cost.

So here I am, three years later, and the PMR/GCA remains in remission. But what exactly is PMR/GCA?

Well PMR, (Polymyalgya Rheumatica) is statistically, a predominantly Northern European, Elderly, Female problem. It is somewhat ironic that it is a condition that is not that common in Japan, yet they spotted it immediately.

Nobody knows exactly what causes it, but is a condition whereby your hip, neck, and shoulder joints become inflamed. Muscle stiffness is the main symptom, sometimes accompanied by high temperature and sweating. And this seems to be due to the fact that your body is attacking itself to fight off some sort of phantom attack on your body. Your immune system is pre-programmed to attack any sort of invasive virus, only in this case, there is nothing to attack, and so it attacks itself.

GCA, or Giant Cell Arthritis, is far more dangerous as it is an attack on your blood vessels. And GCA can cause you to lose your sight. The symptoms are lumps in your temples and possibly lockjaw and head pains.

If you are in any doubt about any of these symptoms, go and see a doctor immediately. Don't leave it until it is too late.