Oxycodone, Hydrocodone, Mexiletine, Neurontin, Cymbalta, Lamictal, Lyrica, Percocet……. were just a few of the medications I had tried to get rid of my chronic foot pain. The lists of potential side effects were miles long, which totally freaked me out. Anxious people typically do not like to take medication because they are too worried about the side effects of all medications, even those prescribed for anxiety.
But, what to do?
One uneventful morning, 25 years ago, I climbed out of bed like I had done approximately 11, 000 times before, I took my first steps and felt a stabbing pain near my left heel. The pain would gradually resolve itself after walking around a bit, but it came back every single morning. I was 6 months pregnant at the time, so maybe the weight gain had triggered muscle strain.
The baby was delivered, but the pain hung around, like a straggly stray cat, needing a home. Diagnosed with plantar fasciitis not long thereafter, my sports doc recommended a Physical Therapist (PT) for light stretching and massage. My PT, Monsieur Rémy, seemed nice until he pulled out the PT version of a jackhammer. I wish I would have turned around and walked out of his office. Feining hearing loss to my intuitive inner voice, I stayed.
He pounded away for 10 minutes on each foot and then told me to go home and apply ice 3 times a day, take some anti-inflammatories and see him in a week. That night onward, I felt an intense burning sensation on the soles of both feet. This was my new normal. I just did not know it yet. I wondered if I had been some sort of fire walker in a past life – the loser that failed to reach an altered state of consciousness and actually got 3rd-degree burns.
There were also vascular changes, meaning that circulation seemed to have been impacted, as well. Now not only my feet burned but they were also painfully cold to the touch.
I fired Monsieur Rémy and would have given him a REALLY bad rating on Yelp, but this was 25 years ago, in a time and place where home computers were a dream of the future.
This episode marked the first day of a life with chronic foot pain. Athletic by nature, my days pre-Rémy were filled with walking, biking, hiking, rock climbing, tennis, racquetball, skiing, etc. I felt so grateful to have the Alps in my back yard, waiting to be discovered and explored. Thinking back, those years were magically sacred – like heaven on earth.
How in the world did I find myself walking down into the fiery path to the pits of hell? What had I done wrong to deserve this?
Before road construction started on my feet, I could have never imagined a life without being active and adventuresome. During many of my solitary hikes in the mountains, I would think of friends who had life-changing falls and accidents – “Jeez, if that ever happened to me, I wouldn’t be able to deal.” I convinced myself. In fact, I used to think that if ever my ability to stand or walk with ease was taken away, I would have no other choice but to end my life. It was an unimaginable scenario.
Spoiler Alert: I am still here. And I don’t plan on dying anytime soon.
In 1995, we moved to California. After seeing dozens of physicians who were unable to diagnose my foot woes, I stumbled upon a pain medicine physician who finally validated my pain and me as a person. Unlike the many doctors I had seen in the past, he assured me that I was not hysterical, crazy or hypochondriacal. With a diagnosis of small fiber neuropathy, he promised to work with me until we found a way of managing my pain, with the goal of living the best life possible….with pain (“with pain” was implied, but I ignored that part.)
“With your help, I’m going to beat this thing!” I told him with determination in my voice.
Much later, I learned that chronic pain is not “beaten.” It is managed. It took me years and years for me to grasp this concept.
I tried every medication known to man for chronic pain. But the side effects made me hate every single drug I tried. Oxycodone was the last resort medication that I stayed with for a year before I said, “F*ck this!” Oxycodone made me sleepy, irrational, emotional and zombie-like.
The upside was that I was so out of it that I decided to haul my ass over to the YMCA every day and started to use the treadmill. 1 minute the first week, 2 minutes the second week, and so on and so forth. Even though the side effects sucked, the Oxy dampened my pain and anxiety enough for me to build up tolerance and strength, enabling me to walk more or less comfortably for 30 MINUTES! When I hit the 30-minute mark, I unilaterally decided that enough was enough. I stopped the Oxy cold turkey (not a very smart idea). Since my body was definitely dependent on the medication, I started having withdrawal symptoms and was admitted to Stanford’s inpatient pain unit for 2 weeks, which was the BEST EXPERIENCE EVER.
At the time, I hated every second of my being there because I had no control, but I was given medications to ease and shorten the effects of withdrawal. Forced to attend pain management classes, I learned more about the dynamics of chronic pain, which finally made sense to me.
For example, pain is created by the brain. After 3-6 months, persistent or chronic pain is less about tissue damage than the sensitivity of the nervous system, so it stands to reason that treating chronic pain involves retraining the brain and the nervous system. Medication can help, but it is not the only answer. Active therapies which reduce stress and examine negative thoughts and behaviors can wind the nervous system down.
At Stanford, I was exposed to new pain management techniques, including Cognitive Behavioral Therapy (CBT), mindfulness, art therapy, etc. And the learning continues even today. Living with chronic pain is a process. There have been highs and lows, but mostly, I stay in the neutral zone and continue to stay as active as possible. Now that I understand my pain, I am still less anxious about moving, and therefore experience pain differently, most of the time.
Trusting people to help me get physically stronger and more mobile is unbelievably difficult. It’s as if I have PTSD and expect the worse to happen. It’s still not easy and fear is a constant companion. Old patterns die hard, but I am overall much happier, functional and confident.
Now, if you ask Yohan about my stay at Stanford, he’ll say, “Oh, you mean when my mom spent 2 weeks in the psych ward?” Don’t believe him. I was in the Pain Unit, which just so happens to be on the same floor, parallel to the psych unit. The difference? While I could come and go as I please, the people on the other side were confined to their rooms and the doors entering and exiting that ward were locked. But in all honesty, that was probably one of the only differences 🙂
I sure do miss hiking and biking in the Alps, but I’ve come to enjoy the world in which I live. Small miracles happen every day. You just have open your eyes and take notice.
I created this short presentation, based on my own 25-year journey with chronic pain. Much of the information and sources found in the below presentation can be found on the American Chronic Pain Association website: http://www.theacpa.org
Dr. Steven Scherer’s excellent article entitled, “Why Does Peripheral Neuropathy Cause Pain?” is a great read: https://www.cmtausa.org/membership/free-info-kit/download-info/managing-neuropathic-pain/
What’s the difference between Acute and Chronic Pain?
-Lasts several days to several months
-Has a distinct beginning and end
-Cause is known
-Pain that continues when it should not
-Pain that lasts for more than 3-6 months
Chronic pain is classified as:
-nociceptive (due to ongoing tissue injury),
-neuropathic (resulting from damage to the brain, spinal cord, or peripheral nerves), or
-a mixture of these, combined with negative psychosocial effects.
Treatments for Chronic Pain?
Treatment must be:
Active: The individual engages in learning and making positive changes to increase function and reduce pain. Education of the patient and family should be a primary emphasis in the treatment of chronic pain.
Multidisciplinary– involvement of several health care providers (physician, psychologist, physical therapist, occupational therapist) providing coordinating services and team communication.
Whole Body Focused: The focus of treatment is not only on the injury or illness but on the psychological and social aspects, as well. This means that many treatment approaches are coordinated and goal-oriented.
Education: Understand your injury and chronic pain
Therapeutic exercise: can be classified to include 1) range-of-motion exercises; 2) stretching; 3) strength training; and 4) cardiovascular conditioning.
Please consult with a health care professional BEFORE starting any exercise regime!
Here are some examples:
-Yoga: breath control, simple meditation, and the adoption of specific bodily postures
-Pilates: breath, core strength and stabilization, flexibility and posture
-Tai Chi / Qi Gong: self-paced systems of gentle physical exercise and stretching
-Feldenkrais: Gentle movements to increase your ease and range of motion, improve your flexibility and coordination
As long as your doctor is okay with the activity you choose, remain as active as possible. Don’t stop moving!
Creative activities release endorphins, the body’s natural pain killers
-Art & Music – stimulate the healing process. Reduces stress and releases neurotransmitters that can decrease the experience of pain.
-Laughter: releases endorphins, increasing the ability to ignore pain.
-treats the patient as a “whole” and not an injured body part
-helps people cope with the emotional and mental distress they have been experiencing
-is not meant to “cure” the patient, but rather provide strategies to function and thrive with pain
Cognitive Behavioral Therapy (CBT)
-short term and goal oriented
–explores the relationship between thought patterns, emotion, actions, and pain. Key CBT skills include learning to identify the negative thoughts/behaviors that serve to worsen pain, and establishing different thought patterns that serve to reduce distress, calm the nervous system, reduce pain, and lead to better health choices.CBT can also be used to treat depression, anxiety, insomnia, addiction, etc
-Mindfulness Based Stress Reduction (MBSR)- decreases attention to pain and pain-related distress, thereby dampening pain processing the nervous system. For a complete description, please read about the work of Jonn Kabat-Zinn: https://www.mindfulnesscds.com/
-Guided Imagery: uses the imagination to take the mind to a relaxing place, such as the beach or the forest
-Biofeedback: uses feedback from sensors and a computer to give information about the body’s stress response and then teaches the patient to control the stress response
-Hypnosis: a state of deep relaxation that involves selective focusing, receptive concentration, and minimal motor functioning
-Social Support: reach out to friends, new communities, providers
-Mental Health Therapists: social workers, psychologists, M/F counselors, psychopharmocologists, etc
-Heat and Cold
-Ultrasound therapy: ultrasonic waves or sound waves of a high frequency to stimulate tissues in the body
-Taping (KT Tape)
-Acupuncture: Needling along one of the 361 classical acupuncture points on these meridians is believed to restore the balance between Yin and Yang
1)Non-opioids: Aspirin (ASA), nonsteroidal anti-inflammatories (NSAIDs), and acetaminophen ((Maximum daily dosage of 3000 mg)
2) Opioids: Examples of opioids include but are not limited to morphine, codeine, hydrocodone, oxycodone, and methadone. Tramadol and tapentadol are not true opioids biochemically but work similarly to opioids primarily on the same receptors.
3) Adjuvant analgesics: Medications originally used to treat conditions other than pain but may also be used to help relieve specific pain problems; examples include some antidepressants and anticonvulsants.
4) Other: Medications with no direct pain-relieving properties may also be prescribed as part of a pain management plan. These include medications to treat insomnia, anxiety, depression, and muscle spasms.
– Not regulated by FDA
– Can have unwanted side effects
-Interactions with other medications
-Research not definitive
-Low levels of Vitamin D are associated with chronic pain and fatigue
-Supplements – BE CAREFUL
-Never take more than 10X the RDA of any vitamin, especially B6 – neurotoxic effects.
-American Botanical Council website: http://abc.herbalgram.org
Programs to Help Those in Need of Medication
-Over 475 public and private patient assistance programs offering access to over 2,500 brand name and generic medications for free or at a low cost. Pharmaceutical companies offer nearly 200 of these programs. Visit the website of the pharmaceutical company that makes your medicine.
-The Partnership for Prescription Assistance: https://www.pparx.org
-GoodRX: (www.GoodRx.com) gathers current prices and discounts to help you find the lowest cost pharmacy for your prescriptions. The average GoodRx customer saves $276 a year on their prescriptions.
GoodRx is 100% free. No personal information required.
Opioids: Controversial for Chronic Pain
– Problem of tolerance
-loss of benefit with time
-escalating usage despite decreasing function and increasing side-effects in some individuals
-the possibility of developing addiction
-Can affect breathing and lead to respiratory depression and even death
-some antidepressants appear to strengthen the system that inhibits pain transmission
-antidepressants that increase norepinephrine seem to have better pain relieving capabilities than those that increase serotonin
-reduce anxiety, help sleep, not addictive
Tricyclic Anti-depressants (Elavil): Side effects include drowsiness, dry mouth
-*Mixed serotonin and norepinephrine reuptake inhibitors or SNRIs (Cymbalta, Effexor) – Reportedly best for chronic pain
Antiepileptic (Anticonvulsant) Drugs
–Neurontin, Lyrica, Tegretol
Leads to less firing of the nerve and hence less capability of the nerve to trigger pain.
Salycitates– mild anti-inflammatory effects
– Aspercream or Sportscream
Counter-Irritants– stimulate nerve endings in the skin to cause feelings of cold, warmth, or itching. This produces a paradoxical pain-relieving effect by producing less severe pain to counter a more intense one- menthol, camphor, eucalyptus oil, turpentine oil, *capsaicin
NSAID –Voltaren gel
Lidocaine Patches- blocks transmission of nerve messages. It acts as an anesthetic, an agent that reduces sensation or numbs pain
Low-Dose Naltrexone or LDN (opioid antagonist: blocks the action of narcotics)
-low side-effect profile
-helps with nerve and muscle pain
-cannot be taken with opioids
Medical Marijuana- Controversial
I am not a doctor….not even close. But, I do have personal experience with chronic pain. I have not given an exhaustive list of all pain management medications or strategies, only those I have tried or done research on. I do know however that a multidisciplinary and active approach to pain is a must: Eating a well-balanced diet, sleeping enough, learning coping skills, reducing stress, getting support, using your mind to reduce your pain. It takes work, but with patience, the right attitude and determination, a meaningful and joyful life can be had in the midst of unyielding pain.
As always spoken with heart, soul and knowledge. Bless you my dear.
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A good learning read Elizabeth! Well written too. This may sound crazy but I’m with Yohan!
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Ahhhhh, you are both nuts! Thanks for commenting and I appreciate your reading my blog. Xoxo!
Elizabeth- thanks for tackling such a complex subject – the topic chose me when I damaged the “descending tracts” in my spinal cord (traumatic injury spinal cord injury) , then developed late onset CMT. I rarely talk about it. Simply put – PAIN HURTS! After years of agony I have tenuous “management” and lead a full and vibrant life! I tried everything- including extreme treatments like fentanyl patch, intravenous lidocaine, Ziconotide (injected via epidural) , and even Ketamine. I had and have incredible access to pain specialists (including mental health) that never gave up. I was told early on that such pain was difficult to treat – code for you are screwed! One wise person told me that “distraction” is the best pain medicine for pain. – they were right! Nights remain tough. I now take a simple regime of opioid medication around the clock – likely for ever. I respect the meds – and must be an outlier – 5 years in – very little tolerance – same relatively small dose. No cravings. Not perfect but takes the edge off. When I tell people that I take opioids including some friends that are doctors they get “that 👀 look” I call “opioid hysteria” . If I was diabetic and took insulin- no one would think twice. So far I have not spit my teeth out or robbed a bank to support my “habit” 🙃. I say all of this as an advocate worried about “access” to pain meds and compassionate care. These drugs and greater pain control have allowed me to get my life back – including back to work, adaptive snow ski, cycle, swim and even room to repair my relationships. Many medical pundants – including the Mayo Clinic say they are not effective for chronic pain and should not be used. I am only a sample of one- and recognize the societal impact of addiction. Yet, I have to think there are many more like me . As such where appropriate I will use my voice to speak up and be an advocate for those that suffer from chronic pain – just like you! Well said!
Thanks for such a comprehensive response and thoughtful commentary. I too worry about the access to narcotic medications, especially for those who need them and use them responsibly. I used small doses of Norco for years and years, not for pain, but for the extra boost of energy it gave me. It never really helped my pain, but had off label benefits. By all means, if opioid meds help your pain, I’m all for their use. Like you say, everyone reacts differently to medication. I do worry about those with CMT who have breathing difficulties as opioids can depress breathing, apparently even at low doses. THat being said, if you and your physician discuss the risks and benefits and they minimize the pain, enabling you to live life fully, why not take them? No one should have to go live life with constant, excrutiating pain. I remember being in the ER one evening for a stomach issue. I never liked to admit that I took Norco daily. But, I chanced it. 2 docs asked me for my list of medications. When I said I took Norco for an energy boost, they laughed at me, explaining that in ALL their years of being doctors, never had they heard such a thing. Why would I lie? If taking a small amount of Norco helped with maintaining a wakeful state throughout the day, and my physician and I knew the risks and advantages, why the ridicule? Not everyone reacts in the exact same way. Here again, why not respect differences and be open to patient experiences? Not everyone can be lumped into one category.
Benjy, thanks for the honesty and additional information. I enjoy reading your commentary and profound wisdom.
Right there with you. Pain all the time even with meds. Never completely goes away.
Hello Elizabeth I am very delighted to have come here. I have published one post on this subject and that is the reason which made me to come here. I should thank WP for that.
Your experience had made you expertise in the field of pain. But I can understand how much trouble and Pain you had to undergo.
I agree fully the content of your blog and happy that ultimately you are on the right path. You are now able to advice people on that. I would of course refer you on this. Thanks.
Please do read my blog on the front page now and contribute your thoughts on that.
Wishing YOU very Good Health Always
Chronic neck pain and annoying back pain. Seeing a pain specialist in nov 11 to have steroids injections into my muscle and then hopefully all the muscles relax from the drug physical therapy in my bones back to where they belong, the back pain is clearly a side effect of the Parkinson’s disease -stooped posture puts pressure on it. I notice it most trying to walk Up and down my road which is fairly flat. Oddly enough the few times I’ve done more rugged terrain which has not been very often not far the increased full body motion seems to loosen things up and not hurt so much. Cycling is problematic too. Hard to swing my leg over the top tube once I do actually get going my balance is off. Really screwed up my bike handling Skills. So ski season is coming for I fear I can’t get up again if I fall. Please excuse the rather sloppy pros but my typing skills are still missing rely on Siri to understand my voice impressions speech recognition. Oh it is a drag growing old I certainly miss those younger days speed hiking up the Vermont Hillsides with a beautiful young woman or two