I love this metaphor about who's driving the car - you or your pain..

Things you can control - Focus on these

• Understanding how pain works
• Changing how you think and feel about pain, and how you respond to it
• Accepting the pain
• Not being afraid of the pain
• Being aware of what you listen to, read, and watch to avoid negativity and drama
• Being kind to yourself and others
• Taking active responsibility for your care
• Not verbally expressing or complaining about the pain
• Not wallowing in the pain
• Not placing blame for the pain
• Staying away from people who only want to complain about pain
• Not sharing your pain with others
• Reducing stress
• Eating right
• Moving more and increasing your activity level
• Moderating what you do
• Modifying what you do
• Being grateful – focus on what you have, not what you’ve lost
• Developing better sleep habits
• Preparing for a flare in advance so it doesn’t overwhelm you

 
Things you can’t control - Don’t focus on these

• Pain
• Imaging test results
• Past medical interventions
• Past painful experiences
• What other people say or do
• Weather
• Cultural and family norms
• Socio-economic background
• Demographics (sex, age, ethnicity, etc.)
• Genetic make-up

Chronic pain appointments can be difficult for both doctors and patients. 

For patients, doctor visits can be intimidating and create anxiety.  We want validation of our pain, empathy, answers, and support.  
 
For doctors, chronic pain patients can be more challenging to treat than other patients.  We can be demanding of their time, attention, and patience.
 
While they genuinely want to help, doctors often have limited training (typically only 11 hours of pain education in medical school); limited time (typically only 15-20 minutes per appointment); limited options due to government, health system, and insurance guidelines; and limited internal resources to treat chronic pain patients.
 
So how do you make the most of your appointment time and get the best treatment when you visit the doctor?
 
Below are 23 suggestions to help maximize the patient-doctor experience (thanks to the many ideas provided by members of the Chronic Pain Champions – No Whining Allowed Facebook support group):
 
 
In general

1. Don’t bring any bad experiences you may have had with other doctors in the past to your appointment.  You don’t want to muddy a new doctor relationship.
2. Go with a stated purpose but don’t go with any pre-conceived expectation about getting a certain treatment or continuing a specific treatment, like opioid therapy, or a specific diagnostic test, like an MRI.  Unfortunately, there isn’t an easy answer for chronic pain.  It’s not like prescribing an antibiotic that will cure an infection.  Most chronic pain doesn’t have a cure.  You may not be able to be fixed.
3. Let your doctor determine the best course of action.  That is why you’re there.  To get the help you need, not necessarily the help you think you need.  Be open to any suggested treatment recommendations.
4. Ask your doctor about arranging recurrent appointments (quarterly, etc.) just for pain management as well as scheduling extra time, if needed, for those appointments.
5. If you’re seeing the doctor about other medical conditions unrelated to your regular chronic pain, don’t talk about pain.  Keep it for your regular pain visits.

 
 
Before the appointment

1. Make a prioritized list of topics/questions you want to cover at the appointment.  That way you won’t forget things and you’ll stay on topic.  You might also want to practice going over the list and what you want to say to help capitalize on your discussion time at the appointment. 
2. Draft an alphabetical list of medications (including over-the-counter medications/supplements).  Include the medication name, the dose (such as 5MG), how many pills you take and how often you take them, as well as the name of the doctor who prescribed them.  Include any allergies on this list.  Download this free template.
3. Put together a medical summary of major health events, medical conditions, surgeries, and special treatments related to your pain condition.  Make it easy to read and keep it short, one- or two-pages so the doctor can get a quick snapshot of your history. Download this free template.
4. Arrange for a family member or other trusted support person to go with you to the appointment to be a second set of ears and take notes.

 
 
At the appointment

1. Arrive early with your insurance card and payment method.
2. Bring your prescription list.  Give this list to the nurse at the beginning of each appointment to help them reconcile your medicines.
3. Bring copies of your prioritized list of topics you want to cover at the appointment.  Share with your doctor and support person at the beginning of your visit. 
4. If visiting a new provider, also bring your medical summary and any relevant x rays, CT scans, MRIs, ultrasounds along with their radiological reports.
5. If you heard something you think might be helpful in your diagnosis or treatment, take time before your appointment to look at evidence-based scientific research that may support it (try searching on Google Scholar) and bring a copy of the research with you to share with your doctor. Be prepared to talk about it.  Don’t say you Googled some information.
6. Stay non-emotional, calm, and factual.  No drama, whining or catastrophizing about the pain.  And don’t get angry or be rude.  
7. Talk to your doctor about what is happening in your life and how your chronic pain is affecting it.  Pain isn’t just a number on a pain chart.  It’s a biological, psychological, and social experience.  Talk about your emotions, your ability to work, your relationships, and your ability to do daily activities.
8. Be specific when describing your pain symptoms.  Tell the doctor when the pain started and how it started, what kind of pain you’ve been feeling (aching, dull, throbbing, sharp, burning, radiating, pins and needles, electrical, numb, etc.),  how often you experience the pain, where the pain is located (lower back, head, etc.), what you’ve done to help reduce the pain (ice, heat, analgesics, etc.), and how successful those treatments have been.
9. Talk to your doctor about treatment goals.  Once pain becomes chronic, the goal of treatment is often increasing functional ability and quality of life, not pain elimination.
10. Talk to the doctor about the psychosocial components of pain and recommended treatment.  Opioid pain medicines and other medical interventions aren’t always the best or only treatment options.  Explore comprehensive multidisciplinary pain management and rehabilitation.  Ask about other treatments.  If there isn’t a cure, how can you manage the pain?
11. Clarify and confirm.  Ask questions if you don’t understand something.  Repeat what you heard to make sure you heard it correctly.
12. Be respectful.  Listen to what the doctor says and do what they recommend, even if they may involve behavioral changes or other treatments you may have already tried or don’t think are valuable.  If you want them to listen and respond to you, you need to do the same to them.
13. Be patient as a patient.  It may take several doctor visits and/or different treatments before you recognize improvement.
14. Be grateful.  Thank the doctor.

 
 
Bottom line
To get the best treatment from your doctor, be prepared, calm, engaged, insightful, and open to self-care.  It’s harder for doctors to treat patients who are negative or expect the doctor to fix all their problems.
 
I hope you find these tips helpful.

Did you know?

• The FDA does not regulate supplements.
• China is the main supplier of supplement ingredients.
• More than 50% of the U.S. adults take supplements.
• Products labeled natural aren’t necessarily safer.

Editor’s note: This article was written based on my experience and what I have researched about the topic.  Everyone is different. The decision to use supplements should be a decision between doctor and patient.
 
As part of the week-long Mayo Clinic fibromyalgia program I attended in 2016, I met with a pharmacist to review the lengthy list of prescription medicines, over-the-counter medicines, and supplements I was taking at the time. My medicine cabinet looked like a GNC store.
 
I was instructed to bring the actual bottles with me to the appointment, so I packed the bottles into a gym bag (yes, I was taking a lot of medicines and supplements) and went to see her.
 
I was surprised as she read each bottle, making comments and recommendations about each pill – including product quality, labeling issues, ingredient safety, and dosing.  
 
When the appointment ended, my medicine and supplement list was much shorter with her recommending stopping most of the supplements and my gym bag much lighter – throwing away the pills I was going to stop taking.
 
Limited oversight
Unlike prescription or over-the-counter drugs, which must be approved by the Federal Drug Agency (FDA) before they can be marketed, the FDA doesn’t review supplements for safety and effectiveness before they are sold.
 
We don’t know where the products are made, how they are made, what is in them, and if the dosage is appropriate.
 
Safety is left up to the manufacturers and distributors of the supplements.  
 
Bottom line
You assume all risks when using supplements.  While some may be valuable, many aren’t.
 
Learn more

• American Roulette — Contaminated Dietary Supplements
• Natural supplements can be dangerously contaminated, or not even have the specified ingredients
• Hundreds of Dietary Supplements Are Tainted with Prescription Drugs
• Dr. Pieter Cohen Explains Dietary Supplements and Regulations
• What You Need to Know (And What We’re Working to Find Out) About Products Containing Cannabis or Cannabis-derived Compounds, Including CBD
• Labeling Accuracy of Cannabidiol Extracts Sold Online

Chronic pain can make it easy to feel overwhelmed, reduce our activity levels, and become isolated.  Goals help restore a sense of order, build self-efficacy and sense of control, improve mood, and provide direction by helping with planning daily activities.
 
One of the tools we learned at the Mayo Clinic Pain Rehabilitation Center was goal setting to help us plan our days and keep us on track. We set goals each day. They didn't have to be massive, but they had to be SMART - specific, measurable, achievable, relevant, and time-bound.
​

• Specific – What do you want to do?  What action will you take?
• Measurable – How will you track progress and know when you’ve reached the finish line.
• Achievable – Is it something you can do? Do you have the necessary skills and resources?
• Relevant – Why is it important to you?
• Time-bound – When do you want to accomplish it?

Some SMART goal examples:

• Increase my step count by end of week to 5,000 steps a day.
• Do deep breathing for three minutes three times each day for next week.
• Read three articles about cognitive behavioral therapy by end of the week.
• Plan a social event to visit in-person with friends and family this week.
• Lose 4 to 8 pounds of weight in the next 30 days.
• Volunteer 10 hours a week at the community center for the next month.

 
Did you notice none of the goal examples included pain reduction?
Our focus should be on reducing stress, improving our quality of life and increasing functional ability and activity, not pain reduction. Focusing on pain reduction is an easy trap to fall into - leading to frustration and depression.  Just as the homepage of my website says - we can live well, despite the pain. 

Pain is the body’s alarm system.  It’s designed to protect us from danger just like a home security system or a smoke detector.  It’s the body’s normal response to acute tissue damage or injury and heals in normally 3-6 months.
 
But what happens when pain doesn’t go away?
 
Once pain persists beyond the normal healing time, it becomes chronic - losing its warning function and becomes its own disease/condition.  It’s an abnormal response (with or without obvious pathology). 
 
Although all pain hurts, not all pain indicates damage. We know what to expect from our pain by the very nature of it being chronic or ongoing.  It’s not like getting burnt, twisting an ankle, or getting stung by a bee that needs protection until the injury has heals.  Of course, any unexpected new pain should be investigated.
 
Learn more

• Central Sensitization Syndrome (CSS) (22:19)
• Understanding pain & what to do about it in less than 5 minutes (5:00)
• A Tale of Two Nails
• How your brain creates pain – and what we can do about it
• Tame the Beast – It's time to rethink persistent pain (5:00)
• Are You Missing Two-Thirds of Your Potential Pain Treatment Plan?
• The Truth About Managing Chronic Pain (w/Dr. Rachel Zoffness) - ZDoggMD (1:39)
• Pain-related fear is more disabling than pain itself: evidence on the role of pain-related fear in chronic back pain disability
• Fear-Avoidance Beliefs and Chronic Pain

Pain, stress, and tension are closely related. Muscles tighten and put pressure on nerves resulting in even more pain.

It’s possible to activate your body’s natural relaxation response to help reduce the tension using mind-body tools like:

• Deep breathing (also called diaphragmatic breathing, abdominal breathing, and belly breathing) – easy to learn and can be done anywhere.
• Yoga and tai chi – can be modified, if needed, to accommodate individual needs, like chair yoga or tai-chi chih (a simplified version of tai chi).
• Mindfulness and meditation – require you to redirect your attention.
• Passive muscle relaxation – mentally relax your muscles from head to toe.
• Progressive muscle relaxation – actively tense and relax your muscles from head to toe.

Helpful videos

• Deep Breathing Exercises for Beginners
• Breathe to Heal | Max Strom | TEDxCapeMay (18:32)
• Mindfulness
• ​Passive Muscle Relaxation to Manage Anxiety and Stress (12:40)
• Progressive Muscle Relaxation to Manage Anxiety and Stress (15:00)
• ​Tai Chi Chih - Joy Through Movement (50:08)
• Yoga For Chronic Pain | Yoga With Adriene (25:33)

Free Apps

• Bellybio
• Breath2Relax
• Mindfulness Bell
• ​The Breathing App

 
FIND MORE TOOLS AND APPS
 

Pain rehabilitation goes beyond medicine and medical interventions – and crosses different disciplines. It doesn’t just focus on removing the pain.  It focuses on the patient and how they can play a role in their own pain management.
 
It’s a proven approach based on the biopsychosocial model of medicine – benefiting patients while reducing costs and reliance on the medical system.  
 
In addition to their general efficacy, these types of programs using interdisciplinary chronic pain rehabilitation can be effective at weaning patients off opioid therapy with long-term improvements in pain, mood, and function.
 
I was fortunate to be able to attend the 3-week interdisciplinary Mayo Clinic Pain Rehabilitation Center – not just once, but twice.  It was both a game-changer and lifesaver for me.  I highly recommend the program to anyone interested in taking an active role in managing their own care.  Read about my Mayo experience in this article.
 
More programs like this are needed to shift the current reliance on biomedical therapy towards a greater reliance on provider-supported patient self-management and true biopsychosocial treatment.
 
Availability is important but so is accessibility. These programs aren't cheap, and insurance can be hesitant the pay the price tag. What payors need to remember is that these programs are cost-effective with a 68% reduction in medical cost spending.
 
Find links to programs in the U.S. and around the globe.
 
What to look for in a program
A pain rehabilitation program should focus on you as a person, not just your pain.  

Interdisciplinary pain rehabilitation programs that take place in the same facility with health care providers working together with open communication and shared objectives are the gold standard of comprehensive care outperforming medical pain services and less coordinated multidisciplinary programs.
 
A comprehensive pain rehabilitation program typically includes:

• Medication management – To find the right combination of medicines and taper/stop any unnecessary medications along with better monitoring of patients who are prescribed opioids.
• Pain education – To help patients better understand the purpose of pain and how best to respond to it – reducing any fears that pain is a symptom of a serious health issue, and that activity will cause more damage.
• Lifestyle changes – To improve diet and sleep.
• Psychosocial intervention – To change self-limiting thoughts and provide coping skills using acceptance commitment therapy and cognitive behavioral therapy.
• Physical therapy/exercise – To build strength and endurance.
• Occupational therapy – To modify and moderate daily activities.
• Relaxation training – To reduce stress on the mind and body – easing the pain experience.
• Family therapy – To teach loved ones how to help/not help those in pain – encouraging self-efficacy and reducing pain behavior.

 
Learn more about pain rehabilitation

• Interdisciplinary Rehabilitation Programs in Chronic Pain Management
• Interdisciplinary Chronic Pain Management: Past, Present, and Future
• Focused Review of Interdisciplinary Pain Rehabilitation Programs for Chronic Pain Management
• Interdisciplinary Chronic Pain Management: International Perspectives
• Interdisciplinary Chronic Pain Management: Overview and Lessons from the Public Sector
• Chronic pain affects the whole person – a phenomenological study
• IASP Pain Management Center – a series of chapters
• The Resurrection of Interdisciplinary Pain Rehabilitation: Outcomes Across a Veterans Affairs Collaborative
• A Call for Saving Interdisciplinary Pain Management

 
Learn more about the Mayo Clinic Pain Rehabilitation Center (PRC)

• Program information
• My experience at the PRC
• Dr. Christopher Sletten explains pain, central sensitization syndrome, and what they do at the PRC (22:19)
• Dr. Jeannie Sperry explains how the PRC can help those suffering with chronic pain (9:44)

Pro golfers use visualization when they play. They picture the precise shot they want to hit before taking the club back – the trajectory, shape, roll and finish. This puts a positive image in the mind; the body then makes the motions needed to turn the image into reality.

We can do the same with our pain.

We can visualize a different way to view our pain and respond to it. We can visualize living well despite the pain. And we can visualize the pain leaving our bodies or the pain taking a smaller role in our lives.

Try these exercises

• Audio Meditation - Visualize your Pain​ (9:54)
• Guided Imagery for Pain Relief (9:55)
• Guided Imagery Practice For Pain (9:43)

Find links to these and other self-management tools.

I was recently honored to be a guest on the Compass Opioid Stewardship Program podcast hosted by Dr. Rachael Duncan, PharmD. and Dr. Don Stader.

I'm so grateful for the opportunity and blessed to be able to share my story with clinicians. I'm also thankful for the generosity of Dr. Stader. You'll find out what he offered me at the end of the podcast. It brought me to tears.

You can listen to the podcast episode on Apple, Spotify, and Libsyn via the links below:

• Apple
• Spotify
• Libsyn

Check out the entire podcast series. 

Learn more about the Compass Opioid Stewardship Program.
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