Tagged with: disability pain perceptions
Growing up I experienced cramps of such intensity in both of my legs that I would break into sobs because of the strength of the pain. In most cases, a hurting and weeping four-year-old does not have the expressiveness or coherence to say anything beyond “It hurts.” I did not have sufficient words to explain anything about the pain I was experiencing.
When the Doctor said “You had a Charlie Horse”, I thought who is Charlie? And where is his horse? I did not connect or understand that “Charlie Horse” was a label for my muscle pain. When I was old enough to start asking questions, none of the doctors or therapists could fully explain the cause of my leg pains. The hypothesis was that the pain was a result of involuntary contractions (spasms) of specific muscles. Most often the pain occurred in my calves and hamstrings. The spasms could occur at any time. When I would wake up with the leg pains, my parents would use massage and passive stretching to provide relief. Thankfully, the experience of this specific pain was often short-lived.
As I get older and my experience with Spastic Cerebral Palsy evolves, I have had to become more versed in complex topics, such as pain, that I wish I had no need to know. Pain can be insidious. I have felt the “pins and needles” sensations of nerve pain, the burning, and the electrical shock sensation. I have been hyper-sensitive to touch and palpitation. I had to learn to distinguish between muscle pain and nerve pain by the amount of time (duration) the pain lasted and whether or not I felt an ache or a burning sensation.
My experience with muscle pain has most often been of short duration. I feel an ache, a dull but persistent kind of pain that lasts a few hours or a couple of days. My experience with nerve pain is often as a sharp and burning sensation that can last for a few hours or last weeks at a time without going away. There are times when medical intervention (e.g. medications) can alleviate the discomfort to a degree and times when there is no level of relief.
There are days when I feel like the child who woke up in the middle of the night. I can remember wanting “Charlie and his Horse” to come and make the pain in my legs disappear. When one experiences re-occurring pain, the age of the person does not matter at all. The person just wants the pain to stop. The person may want to understand why they hurt, the cause of the pain, and how to make the pain go away, but first and foremost, they need the pain to stop.
Doctors, therapists, trainers, and other fitness professionals only witness reactions to pain or hear accounts about it. They do not feel it directly. Yet these skilled and capable professionals are taught to ask about the location, quality, and the intensity of the pain. As skilled and proficient as I always try to be about the description and details about my pain, there are points when I fail.
The intensity of my pain can vary. The pain can start in one spot and end in another or travel. I cringe at the question, “What does your pain feel like?”
The first thought that goes through my mind is “How do I explain the feeling of chronic burning?” Will the words burning, searing, throbbing, or steady burning, convey the message? Has the professional ever felt like their skin was on fire?
Tools that Doctors and other professionals use to assess and diagnose pain are constantly improving. The American Chronic Pain Association offers a number of resources which may be useful including a quiz on nerve pain, pain scales, brochures on pain management and understanding nerve pain, and a searchable database of resources.[i]
I would have loved to have a conversation with my Doctor about “Charlie and his Horse” when I was younger, so that I was more engaged, and had a better understanding of what a muscle spasm was. In my adulthood, I am learning to have a better understanding of pain and related symptoms beforehand. Is there a way to teach people about pain prior to dealing with searing or throbbing pain or steady burning?
Muscle relaxants and exercises are often the prescribed way of managing pain. I wonder if there are ways to introduce the concepts of pain and how to recognize and deal with pain in a preventative context for children, who turn into adults who must manage their own version of “Charlie and his Horse” and pain?