What I Wish My Family Knew about My Chronic Pain

After three decades of chronic foot and ankle pain, forced opioid tapers, and family misunderstandings, I often think amputation may be my only choice.

I dream of amputation. I mentioned this to my pain management specialist once and he laughed, thinking I was joking. But I wasn’t. I literally fantasize about getting into car accidents that will require my right foot to be amputated.

I was born with bad feet. They started hurting when I turned 12 years old. To get technical, I had extra bones that were loosely attached to my navicular bones (these are bones everyone has that are located at the top inner side of the foot above the arch) in both feet and I had severe pronation (that’s how your foot naturally rolls and moves inward as you walk). So, every time I walked, my posterior tibial tendon—one of the key tendons involved in calf movement and arch support—would rub against the accessory navicular bone and irritate it.

Chronic pain is something that 100 million people grapple with every day, with a higher prevalence among women. (Image: iStock; this image does not depict the author.)

Surgery Upon Surgery

By the time I was about 30, the tendon was starting to shred so I had an operation on my left foot by supposedly the best foot and ankle surgeon in the Washington, DC, area. I later learned from a renowned foot/ankle surgeon that this procedure fails in 50% of adult patients and sadly, I fell into that category.

The same surgeon performed a more aggressive surgery on my right foot called a triple arthrodesis to fuse three joints in my foot/ankle, and thus, make them immobile and, ideally, unable to cause pain. One of the screws was put in at the incorrect angle causing an odd twist in my foot that required foot/ankle reconstruction surgery a year later. As a result, my pain was just redistributed to other areas of my foot; before the procedure, the pain had been localized to one spot.

As my feet caused more pain, I became less active and started gaining weight, a devilish challenge for many people suffering from chronic illness. I finally consulted a pain management specialist when I hit 40 years old, 150 pounds and 5 feet tall.

My combined foot surgeries, including repair of a triple ankle fracture that I unfortunately incurred during a horseback-riding accident earlier in life, have left me with severe arthritis in both feet that only compounds my regular foot pain.

And there’s something that I believe nobody understands about chronic pain, that it has a domino effect on the rest of your body.  If I have aches and pains from arthritis in my wrists, or when my feet are bothering me, all other pain is magnified.  Almost every night while getting ready for bed, I share with my husband, “I’m hurting a lot, everywhere.”

Trying to Manage with Medication and More

I’ve tried everything from mental health therapy to physical therapy and acupuncture, from high doses of morphine (an opioid) and gabapentin (an anti-convulsant that sometimes helps with nerve pain) to duloxetine (an anti-depressant that also is used to help relieve nerve pain)and anti-inflammatory meds, as well as traditional arthritis medications. Nothing helps me except for opioids. But as political pressure has grown to stem the opioid crisis, many states have limited opioid dispensing, my dosages have been cut back severely and my pain has spiked unbearably.(See related article on how to avoid health insurance claim woes.)

I have since joined chronic pain support groups online, looking for any practical solution. One man read my short introduction and shared with me via private message that he, too, had undergone a triple arthrodesis that failed to heal his foot problems. He said actually elected to have his foot amputated and he suggested I consider the same course of action. The idea was mouth-watering but also intimidating.  How would people react to seeing a metal foot?  What would my husband think?  How would my life change?  Would it cause more pain? (Foot pain has also been linked to fibromyalgia.)

The truth is, I would be a great candidate for an ankle replacement surgery but sadly, I have found that insurance companies tend not to cover that option unless you’re at least 50 years old. I’m not sure why and I find it entirely frustrating.

For now, I’m on a small dose of hydrocodone/acetaminophen (Vicodin) that I have to carefully manage to ensure I have three half-pills daily because my insurance doesn’t cover extended-release (ER) medication. If I take my son to the zoo or stand on a long supermarket check-out line, I’m screwed because there’s no extra for breakthrough pain.

My pain management specialist won’t increase my dosage despite my having been on twice that amount previously. He says he can’t justify to the state that, despite my documentation of foot deformities, I am in enough pain to increase my dose back to what it was. He probably thinks I am just a whiny patient.

He did explain, however, that if I or someone in my household were to take my entire month’s worth of prescribed opioids in a suicide attempt, he would have to justify to the state why he prescribed that amount in the first place. The problem is that there’s no way for my doctor, or me, to measure my pain. It’s incredibly frustrating.

If Only My Family and Friends Really Understood

Even more upsetting has been the struggle for family and friends to understand my foot pain. For decades, I’ve argued with my father when on family outings. He refuses to drop me off at the door of our destination so I don’t have to walk through a parking lot and has called me an addict more than once. I have explained that I don’t get any enjoyment, buzz, high, or even feel tired from the medication – my body is used to it after three years – but he doesn’t believe me. That part is crushing. To have my parents think I’m an ADDICT is devastating. I try to explain that I am not addicted but rather physically dependent on opioids for my minimal quality of life. They, and many, don’t understand the difference. (Read more about addiction compared to physical dependence.)

Nobody seems to understand that my feet have a limited number of steps per day before I’m incapacitated by pain. In addition to battles with my father, I have had to turn down friends who invite me on local shopping trips. Leisurely walking through even one big store isn’t an option for me.

I’d like my family and friends to understand that I don’t want to have pain. I don’t like that it controls everything I do. I want them to know that I’m constantly worried about not having enough medication to control my pain and that having a handicap parking sticker is not “awesome.” I’d rather have zero pain and park far away and walk for the exercise. But I CAN’T. And, that losing weight is a huge challenge for me because I’m not a swimmer and I can’t do any kind of exercise that requires me to be on my feet.

I wish they could understand. I don’t enjoy complaining about my hurting. I’d love to exercise. I’d love to go hiking in the woods. I’d love to wander around the mall. I’d give anything to be pain-free. Anything. Well, almost anything, as I’m not 100% sold on cutting off my foot - just yet. 

 

Editor's Note: The author shared with PPM that she was recently diagnosed with Complex Regional Pain Syndrome (CRPS/RSD). Read how she is coping with the coronavirus pandemic and parenting under lockdown.

Updated on: 04/09/20
Continue Reading:
Fibromyalgia: Why Do My Feet Hurt?
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