Patient Perspectives on Pain
In preparing to write this overview of neuropathic pain, the author initiated conversations with several of her patients to elicit descriptions of how their individual pain symptoms feel and how it has affected their lives. Their responses follow.
▪ From a 34-year-old man with T10 paraplegia:
“You know, you'd have to have a complete injury not to feel pain. Not all quads and paras have complete injuries; we do have pain. The worst pain kind of starts like a pressure, like from an overworked muscle. Then it progresses into a burning, like a heat you can't make stop. It gets to the point where—honestly, doc—you don't want to live anymore.
“You know, you get a few days of bad weather and the pain starts up, and you're stuck in bed 3 or 4 days, it's rough.
“I haven't had a full night's sleep since 1997. [Motor vehicle accident in 1997 caused spinal cord injury.]
“Don't forget to tell your readers that chronic pain destroys relationships. It can destroy friendships and social life. Friends call to ask me to go down the shore and sit on the beach; I can't do that! Fifteen minutes in the car and I have to turn around and go back so I can lie down.” [Patient has symptoms of autonomic dysfunction, such as sweating and tachycardia, that are the cause.]
▪ From a 53-year-old man with type 1 diabetes mellitus:
“The pain in my hands is so bad sometimes, it feels like my hands are stuffed too tightly into the skin and they are going to explode. It keeps me awake at night. And my feet don't feel like feet. Half the time they are numb blocks, and the other half they're burning.
“My family is going to Europe this summer, and I decided to stay home. I just can't sit that long on a plane without being in extreme pain.
“I guess you can tell that my mood is affected by this.” [Nonetheless, this patient refuses antidepressant therapy on the grounds that he already takes too many medications.]
▪ From a 56-year-old woman with chronic progressive multiple sclerosis:
“I know you doctors try to help us, but you can't know how it feels. When I try to move sometimes, it's like someone is jabbing me with a hot poker. My muscles jump, and it feels like the nerves are being shocked. You know, this is just miserable.
“I hate to let my daughter see me when I'm in pain, because I look and feel like a witch. I think it scares her, and that's why she doesn't come to visit me very often. I miss being able to watch her grow up.” [The patient has lived in a nursing facility for more than 10 years; she is wheelchair bound and unable to perform self-care.]