Written by Larry Kellerman
“Few things a doctor does are more important than relieving pain. . . pain is soul destroying. No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained” (Marcia Angell).
Yes, pain is soul destroying. I watched that with my wife, who suffered from the intense neuropathic pain that accompanies multiple system atrophy (MSA) for many patients. From the start of symptoms until her last breath chronic pain was her defining symptom. When a doctor would ask what her pain level was on the scale her response was typically “Higher than 10, more like 12 or 13.” When a body is fighting that level of pain the physical and emotional stress become overwhelming.
I bring this up because of a recent series of communications with a good friend of an MSA patient. She recently became re-acquainted with her friend after being absent for several years. During the conversations they shared her friend told her about the pain she was suffering and the lack of any medication to touch it. By the end of our first conversation I had shared with her the link to the MSA Coalition’s newly updated “MSA-What You Need to Know” booklet and a short summary of my wife Colleen’s experiences.
After the phone call my curiosity was piqued; what if any new developments in pain management for MSA patients might be found through an internet search? One of the first articles I found was a 2015 article “Pain in multiple system atrophy and progressive supranuclear palsy compared to Parkinson’s disease” (Kass-Illiya et.al., 2015). The article reported the results of a small sample-size study (102 patients total) of which the aim was “to evaluate pain intensity, location, and associated symptoms in atypical parkinsonian disorders compared to PD.”
The findings were striking for the PD and MSA patients. Of the 65 PD patients 89% reported pain as did 81% of the 21 MSA patients. Even more startling – 100% (14) of the MSA-P (Parkinson’s) patients reported pain, while just 43% of the MSA-C (Cerebellar) reported the same. Location of the pain in the MSA patients was from the neck down, with the legs receiving the most reports. In other words pain is an undesirable companion on many an MSA journey.
This past Saturday evening I received an email from that friend. The MSA patient had passed away the previous day and she just wanted to say “Thanks” for sharing. The message read in part “I’m very sad because I will miss her very much. But I’m relieved that she is now out of pain.”
I started this post with a quote from Marcia Angell. Part of that quote is “…pain is soul destroying. No patient should have to endure intense pain unnecessarily.” There could well be 80% of America’s MSA patients (~20,000) who would resoundingly say “and that’s an understatement.”
Written by Larry Kellerman, MSA Coalition Board of Directors & Support Line Volunteer