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My thoughts

25 tips to get the best treatment

3/29/2022

 
My article originally published December 30, 2019 in National Pain Report. Edited March 16, 2023
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 25 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.  Any treatments should be a shared-decision.
  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.
  6. Confirm your doctor is up-to-date with the latest pain science, and treatments.  They should be able to correctly answer the questions from my pain quiz.
  7. Reduce your reliance on doctors and use of the medical system as your self-management skills grow.
 
 
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-management.  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.

Beware of supplements

3/19/2022

 
Updated 12/30/22

Did you know?
  • The FDA doesn't regulate supplements.
  • China is the main supplier of supplement ingredients.
  • Products labeled natural aren’t necessarily safer.
  • Some CBD products are being marketed with unproven medical claims and are of unknown quality.

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
  • Dietary Supplements: What You Need to Know
  • 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
  • Cannabis is no better than a placebo for treating pain – new research
  • Cannabis For Smart Consumers: What The Industry Does Not Want You To Know​
  • Labeling Accuracy of Cannabidiol Extracts Sold Online
  • Medical Cannibis for Chronic Pain (my blog post)

what goals have you set recently?

3/12/2022

 
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 the 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. 

Celebrate!
While it's natural to celebrate big goals, be sure to celebrate milestones along the way, as well as smaller victories. These celebrations keep us motivated along the way and help instill confidence.

Resource
  • Goal Setting for Pain Rehabilitation​

Hurt doesn't always mean harm

3/10/2022

 
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

calm the mind. calm the body.

3/1/2022

 
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
 

    Author

    Tom Bowen is a chronic pain patient who turned into an advocate, educator, and collaborator.

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