As a veteran patient who has been living with chronic pain for 12+ years, the question I get most often whenever I post about living with chronic pain is: How do I describe my chronic pain to my doctor? How do I convey the seriousness of what I’m living through?
I’ve done my best to answer this for you from my perspective as a patient in Taiwan coping with a healthcare system that is not in my native language. Today’s post provides some words you can add to your vocabulary for your appointments while also providing some additional tips to help you find your voice.
Finding My Voice To Navigate My Appointments
When I first started down this road in 2009, I found it difficult to explain to my doctors what was happening to me. I didn’t have the vocabulary to explain my pain, nor did I know about the different kinds of pain I was experiencing until I was years into my health journey.
Having that information when all of this started would’ve been immensely helpful to me and to my medical team. That is why I have decided to write about it today. Perhaps this post will reach new patients in Taiwan and Asia who are struggling to explain what they are going through.
Being able to describe your pain accurately to a medical professional is a task that many patients grapple with. For years, I struggled to describe the different types of pain I was experiencing first with axial spondyloarthritis also known as Ankylosing Spondylitis.
When I got my fibromyalgia and MECFS diagnoses and then my IBS diagnosis, I experienced a whole new level of pain and suddenly found myself floundering to find words to describe the new pain I was experiencing. It was overwhelming.
Manage My Pain PRO
In 2015, I decided to experiment with a health app called Manage My Pain PRO. While I don’t use this app as much anymore, I found it immensely helpful as a new patient who was still struggling to find her voice in healthcare appointments.
Manage My Pain PRO lets you take control of your pain vocabulary by guiding you through a 60-second per day reminder that helps you track your pain and activity. The information you provide to the app is then analyzed and then collated into helpful charts and graphs that are visual guides for your doctor to work with. It also helps to summarize your pain entries into unique reports that clearly lay out information that your doctor can use to help you.
Here’s an example of a chart I was able to show my medical team. It helped them learn that the pain I was experiencing was widespread. It also showed them what time the pain was happening. (It’s almost constant for me.)
That app empowered me, and while the doctor I was seeing in 2015 was a dud with a lot of gender bias and pre-conceived ideas of what he thought I needed to hear, I eventually learned how to talk about my pain to start advocating for myself.
By the way, I left that doc because he was awful. It’s also important to recognize when your doctor-patient relationship isn’t working for you, but that’s another post!
Understanding your pain diagnosis and why doctors need more education on pain management
I’ve yet to meet patients who are happy with their pain management care in Taiwan. The most common complaint I hear is that doctors aren’t listening to their patients and patients aren’t feeling heard or validated.
Many medical professionals are struggling to catch up with pain as a disabling prognosis. There are countless studies that show that pain can continue for a long time after illness or injury. In these cases, pain evolves into its own disease and becomes its own prognosis. (This is what happened to me with fibromyalgia.)
Under prolonged chronic pain, our nerves become hyper sensitive to pain signals and begin amplifying them.
It is well known that doctors do not receive enough hours in medical school to learn how to treat pain properly. It is also fairly well known that veterinarians learn more about how to treat animals in pain than medical doctors do for their patients!
In case you’re thinking I haven’t provided anything more recent than a link to an article from 2009, here are a few other references that show the lack of training involved with medical students in regards to treating their patients in pain:
Pain medicine was mostly incorporated into medical courses such as anaesthesia or pharmacology, rather than presented as a dedicated pain medicine module. Ninety-six percent of medical schools in the UK and USA, and nearly 80% of medical schools in Europe had no compulsory dedicated teaching in pain medicine. On average, the median number of hours of pain content in the entire curriculum was 20 in Canada (2009), 20 in Australia and New Zealand (2018), 13 in the UK (2011), 12 in Europe (2012/2013), and 11 in the USA (2009).Dec 2018 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6251835/
AMA Journal of Ethics: A recent editorial by John D. Loeser, MD, former president and founding member of the IASP, identified “inadequate education of primary care providers about pain and how to treat it” as one of five major crises in pain management today . To effectively address this problem, basic pain education should be made a mandatory and integral part of medical school curricula in developed and developing countries alike. A small but growing number of such educational efforts are taking place, mostly in developed countriesAMA Journal of Ethics: https://journalofethics.ama-assn.org/article/undergraduate-medical-education-pain-management-across-globe/2013-05
Medical Trainees’ Experiences of Treating People With Chronic Pain: A Lost Opportunity for Medical Education – Evidence suggests that physicians’ opinions about patients with chronic pain become progressively negative over the course of medical training, leading to decline in empathy for these patients.May 2018: https://journals.lww.com/academicmedicine/fulltext/2018/05000/medical_trainees__experiences_of_treating_people.43.aspx
I realize that all of this sounds dismal, especially if you’re reading this and you’re in pain right now. But I’ve got you! Let’s learn more simple tools we can use at our appointments to ensure our voices are heard and we’re giving medical professionals the right info to treat us.
And if they’re not listening to you, well, I’m sure you know the drill. It’s time to find another doctor.
Remember, YOU are the expert in terms of what YOU are living with. Your voice matters. Only YOU can advocate for yourself so let’s learn how to do that.
Being able to precisely describe your pain is a very hard conversation to have. Most patients don’t know there are various types of pain. They often aren’t aware that these various types of pain are very different to each other. Here’s a basic breakdown for my readers.
The five most common types of pain are:
Acute pain is pain that happens with an injury or illness. It lasts for a short time. Sometimes it can last a few minutes, and sometimes it can last longer if it’s related to an injury, illness, or surgery. Acute pain typically subsides after the injury or illness subsides. However, if the injury doesn’t heal correctly, it can lead to chronic pain.
Chronic pain is defined as pain that is constant or intermittent and lasts longer than three months.
Chronic pain usually occurs with a health condition such as arthritis or fibromyalgia, but there are many reasons for chronic pain. A good example is migraine and headache pain. Headaches and migraine are considered chronic because they continue over months and years, even when pain isn’t always present. Migraine, for example, holds second place among the world’s causes of disability.
This is where the Manage My Pain PRO app helped immensely. How ridiculous that I had to learn this from an app, which is why I’m mentioning it now. No doctor ever thought to explain to me that pain can be constant or intermittent. Once I realized when my pain was happening and how often it was happening, that really helped me to start narrowing in on my pain vocabulary. (I’ve provided a helpful vocabulary chart in this article. You’ll also notice words embedded into this article’s banner.)
Neuropathic pain stems from damage to the nerves or other parts of the nervous system. This type of pain is distinct. It’s usually described as stabbing, burning and shooting pain or it feels like pins and needles. I’ve also noticed sensitivity to touch with this type of pain, and I experience feeling hot and cold. Neuropathic pain is a common type of chronic pain and it comes and goes. Sometimes, it’s so severe that it prevents patients from being able to do everyday activities. This type of pain also interferes with movement which can lead to mobility issues.
Nociceptive pain is caused by damage to body tissue which is often caused by an external injury. Examples of this type of pain include hitting your elbow, twisting your ankle, or scraping your knee. It’s often experienced in joints, muscles, bones, skin, and tendons. This type of pain can be both acute pain and chronic pain.
Radicular pain is a specific type of pain that radiates from the back and leg. It’s called radiculopathy. It’s commonly known as sciatica because the sciatic nerve is affected. This happens when the spinal nerve gets inflamed or compressed, resulting in tingling, numbness, and weakness. This type of pain can be felt deep in the leg and it’s a steady pain. Walking, sitting, and other activities make this type of pain worse.
Describing Your Pain – Tell Me About Your Pain
For patients who are battling invisible pain due to examples such as fibromyalgia, CRPS, RSD, diabetic neuropathy, or chronic pain after cancer treatment, being able to convey where your pain is located, how often it happens, and the depth of discomfort it causes is key.
Your doctor can read your medical charts and refer to reports and lab results, but it doesn’t amount to much if your doctor doesn’t understand what you are experiencing or have an idea of your perception of pain. This is why it’s essential that you communicate this to your pain management provider as accurately as possible.
If you scroll back to that chart I posted about locations of pain from Manage My Pain PRO, this is the type of thing I take to every appointment to ensure that my doctor is getting all the information I can provide him with.
Tell Me About Your Pain
Your doctor should already know the cause of your pain based on your medical records. S/He will know the cause of your pain is either from an injury or a disease. Your doctor’s goal should be to eliminate or minimize your pain symptoms so you can start living your life again.
Timing is Key
Don’t assume that your doctor knows or remembers how long you’ve been in pain. If you’ve been experiencing pain for a year, a month, or a decade, your doctor needs to be reminded and remind them regularly. I have brought up these questions at every single appointment since 2015.
- I’ve been in pain for ______.
- My pain frequency is: (constant) (intermittent)
- My pain lasts for ______ before it subsides.
- My pain occurs when I am doing ______.
- What makes your pain worse?
- What helps to lessen your pain once it has started? (List medications, coping techniques, and anything else that you’ve noticed takes an edge off your pain.)
- Likewise, jot down what makes your pain worse. Include treatments and actions that increase your levels of pain.
Describe Where It Hurts
Most doctors will hand you a chart of a human body showing the front and back part of the body. They’ll ask you to circle or color where you are experiencing pain so they know where you are hurting.
Then there are pain charts. I personally hate it when doctors pull out that damn chart because pain is subjective. Nevertheless, it’s important to try and give your doctor an idea of the level of pain you’re experiencing. Think about where your pain falls on this scale most of the time. That is the number you should give to your doctor unless you experience extreme pain fluctuations. That will give your doctor an idea of what you’re experiencing daily.
“My Pain Feels Like…”
Most of the time, patients experience one or two consistent pain “feelings” but some can experience a range of sensations.
The most common pain types are:
- Sharp stabbing pain
- Extreme heat/burning sensation or extreme cold
- Throbbing, “swollen,” inflamed tissue
- Sensitivity to touch
- Numbness, tingling, pins and needles
See my Pin above for further adjectives to describe your pain.
Last But Not Least! Create a Pain Journal
I encourage patients to document a week of pain before they meet with their doctor. By documenting it, you can provide an easy overview of your week. Then your doctor can spend their time focusing on treatment rather than going over Q&A to get what they need from you. Additionally, addressing all of this in advance ensures your doctor has the most up-to-date information about your daily levels of pain.
I hope today’s post has given you some tools to work with. Now let’s start educating our doctors on what we’re going through, get them to acknowledge the disabling impacts that their patients are experiencing, and focusing on finding adjustments and treatments that work for pain patients.
We are all looking for someone who can help us find a better quality of life with chronic pain in the absence of a cure. If you have questions, I’d love to hear from you in the comments section!