The Character of Pain

I’ve been in nearly constant pain for the last 21 years. Exceptions include sleeping, twilight anesthesia (surgery) when I’m not conscious of pain, and the “2 Seconds Without Pain” that used to allow a few moments of “old-normal” pain-free feeling. Those “2 seconds” no longer occur.

The quality or characteristic of pain has slowly changed over the last few years. I would say that I have overall less pain than a decade ago. But there’s still constant pain that often reaches 7/10, even 8/10 by evening depending on the day’s activities.

I /think/ the change of my pain characteristics may be due to weekly infusions of SCIG (subcutaneous immunoglobulin) therapy. The theory is that the small fiber nerves damaged by chemotherapy have healed somewhat. This is what has been suggested to me.

Here are some examples of pain then and now:

!0 years ago I wouldn’t walk more than 10 feet before needing to get off my feet due to pain. Maybe I could force myself to walk up to 20 or 30 feet but I’d pay a lot for that effort.

Now I can force myself to walk 50 or 100 feet before requiring to get off my feet. This is a surprising and pleasing change. I don’t do that effort very often but it has been done when expedient.

Better pain management, SCIG therapy, and years post-chemo-assault are the only reasons that I can think of for why my pain has changed. AFAIK there have not been additional assaults to my nerves.

So I’m still in pain throughout the day ranging from a low of 3/10 in the early morning, to 5/10 to 7/10 from late morning to afternoon, and 6/10 to occasionally 8/10 from late morning to evening. But I can handle it. It’s a different kind of pain.

That’s the thing that I can’t easily describe — how pain has changed.

For example my “Lighting bolts of pain” still occur but I’m so very used to them that nearly as soon as one occurs it’s gone. My wife perceives my “lightning bolts” as what a newborn will sometimes exhibit for no apparent reason, a whole-body sudden jerk, hands outstretched.

The lightning bolt hasn’t really changed. It’s my reaction to it that has changed.

The knife jabs (like a knife pushed through the top of my toe) is probably the worse pain I feel. But the good news is that they only last less than a second. My reaction to it starts and finishes after the pain subsides. So I jump — but right away go about whatever I was doing. No problem!

The second worse pain is also the most common pain I feel. That pain feels like the bottom of my foot was hit really hard by a rubber hammer. In case you don’t know the head of a good rubber hammer is actually pretty hard, and it’s heavy. So a hit would bruise any part of your body that it hits.

If I were to stay in bed all day then I wouldn’t have the “rubber hammer hit” pain. In fact just standing on my feet for more than a few seconds will start the hits. Before covid, when I attended church I always took my electric wheelchair. I could, in fact, from the handicap parking walk into the sanctuary, sit in the back, very few steps. But the problem is that people would want to greet and talk with you. They have no trouble standing on their feet for hours, whatever, but my feet begin to hurt badly in a few seconds. So it was better to take my wheelchair. When someone wanted to greet or talk with me, I would be sitting.

Standing, walking, anytime I am upright on my feet, they hurt more and more. Lightning pain and knife jab pain subsides immediately. But “rubber hammer hit” pain is cumulative. By the end of the day the pain is horrible, 7/10 easily, and often 8/10,

I try to do as much as I can staying off my feet but that’s difficult. Every day is a challenge to manage my pain by counting the time on my feet. I try to plan out every step but most often there are more steps required than planned. By the end of the day, when one of my last tasks is to brush my teeth. By that time it’s so difficult to get on my feet again to brush.

On a standard pain scale, 7-8 is considered severe, and that it “Interferes with basic needs”.

For me, my way of thinking, the “pain faces” don’t mean anything. But the text that appears below the scale I can process. I guess that’s partly why I never say 9/10 or 10/10 — “urgent care” isn’t required. But 7/10 and 8/10 “Interferes with basic needs” applies almost every evening.

Ed