|
Getting your Trinity Audio player ready...
|
I often hear about secondary symptoms. In research papers, in clinic appointments, in the way doctors talk about conditions like mine, there is a clear hierarchy: primary symptoms are the real story, the direct consequences of the disease itself. Secondary symptoms are the downstream effects, the knock-on consequences, the also-rans. Less direct. Less central. Somehow, less.
Pain is one of those symptoms. Acknowledged in the literature, certainly, but rarely given the weight that patients themselves experience it. I am not convinced that distinction holds up in real life. And this weekend gave me a useful reminder of why.
My legs have been in significant pain, with some swelling in my hands and feet: a combination of the wheelchair, reduced muscle use, rigidity, and various neurological processes I only partially understand. The usual remedies were applied. It is easing now. But pain does not arrive with a footnote explaining why it should matter less.
The timing was not ideal. The past two days coincided with a Jewish festival followed immediately by Shabbat: no phone, no computer, no real distraction. Add insomnia and a wheelchair to that combination and it made for a long weekend.
In PSP, the primary symptoms are well documented: postural instability, vertical gaze palsy, axial rigidity, freezing, cognitive slowing. These arise directly from tau protein accumulation damaging specific neurons. They attract the research funding. They dominate the literature.
Pain is classified as secondary. Not caused directly by the neurodegeneration itself, but by its consequences: rigidity, immobility, abnormal posture, a body that no longer cooperates as it once did.
Not this weekend. Not me.
This pattern is not unique to PSP. In multiple sclerosis, fatigue affects around eighty percent of patients and many describe it as their most disabling symptom. Classified as secondary. Underrecognised and undertreated for years, until patient-reported research forced clinicians to ask what people were actually experiencing rather than what appeared on a scan. In Parkinson’s disease, pain has long been ranked by patients among the most burdensome symptoms, consistently underemphasised in research focused on the primary motor features. Cancer patients say much the same about fatigue and anxiety. Anyone who has sat with any of these will confirm that the word secondary does not begin to capture the experience.
Medicine traces symptoms back to origin points. Patients experience them differently. What matters at two in the morning is rarely whether something is primary or secondary. What matters is whether you can sit still, sleep, or get through the next hour.
PSP has given me rigidity, stiffness, balance problems, freezing, and what I can only describe as wires that shut down without warning. None of those have hurt in the conventional sense. Frightening, relentless, cumulative. Primary symptoms, every one of them. Duly noted.
Two days of acute leg pain reordered my priorities rather quickly.
Pain does not care about causal pathways. It arrives and demands attention. Secondary is a useful word in a research paper. It feels considerably less useful when you are awake at two in the morning during Shabbat with a hot water bottle, trying to negotiate with your own nervous system.
What pain demands is effort. Unglamorous, repetitive, grinding effort: another painkiller, another stretch, another application of heat, until eventually, slowly, things begin to ease.
Primary or secondary. Direct or downstream. The body does not experience a hierarchy between them.
Pain is pain. The classification belongs in the literature. The rest of us will be over here, slowly and stubbornly getting comfortable on our own terms.
Secondary symptoms. Somehow less important.
I will let you know when I find one that is.
