Round 2&3….

I feel a bit like a commentator at a sporting event, except this is helping me process what is happening and a lot of people have asked for updates. This is easier than replying individually.

After a relatively quiet morning – I even managed a game of chess – it came roaring back, just as I had feared.

This time it was slightly less intense than last night, but not by much. At one point I found myself lying face down on the floor with ice-cold packets of peas wedged between my thighs, cushions under my knees and the dog keeping me company. If anyone had walked in, they would have assumed I had completely lost the plot.

The nerve pain was still brutal.

To cut a long story short, my doctor prescribed a medication that combines tramadol (an opioid) with paracetamol. I have a bad history with morphine after suffering withdrawal symptoms following my knee reconstruction, so I was reluctant to take it. But I did.

Before giving in, I tried just about everything else: ibuprofen, Optalgin, Acamol, Voltaren gel and plenty of massage gun therapy. Nothing really touched the pain. At its peak I would put it at around 7–8 out of 10.

Eventually I took the opioid.

For the first half hour I felt incredibly relaxed. I was laughing, joking and clearly feeling the effects. Unfortunately, the pain then started to creep back. Thankfully, about an hour later things settled down and have remained relatively calm since.

The pain hasn’t gone away completely. It feels like it is lurking just beneath the surface. Every now and then I get a twinge and wonder whether another attack is about to begin.

Pain is supposed to be a secondary symptom of PSP.

Right now, it feels pretty primary.

Some people have suggested injections, but because the pain is not confined to one specific point and instead spreads across much of my upper left leg, the doctors do not think that approach would be useful at this stage.

What makes this so difficult is its unpredictability. The pain can become intense without warning and then disappear almost as quickly as it arrived. It is impossible to trust your own body when it behaves like that.

Out of curiosity, I asked two AI systems to compare my description from last night’s post against recognised pain scales. Both suggested the description was consistent with some of the most severe forms of pain reported in medicine, including conditions such as trigeminal neuralgia and cluster headaches.

Whether those comparisons are accurate or not, I can only say that the pain felt explosive. It was unlike anything I have ever experienced before.

For now, the medication seems to be helping. I hope I can use it sparingly and avoid the problems that opioids can bring.

More than anything, I hope this settles down and allows me to return to the familiar day-to-day challenges of PSP: the wheelchair, the balance problems, the choking management and all the other things that have become part of normal life.

Never thought I would say this, but right now I would happily swap this nerve pain for a boring PSP day.

And one final thought.

I have read plenty of articles describing pain as a secondary symptom of PSP.

Not today.

Not to me.