Step Into Shoes of Chronic Pain Sufferers
Some of the strongest people are not the ones bench pressing weights at the gym. They endure unimaginable pain day after day.
This is Chronic Pain
“On a scale of 0 to 10 can you tell me your level of pain today?”
“Pain scale?” replies Mrs. Martin. “It feels like someone is opening my skull with a dull serrated knife. Then they poke around for the remaining good piece of my brain and stick a fork in it.”
Unaffected by the graphic hyperbole, the nurse replies, “So, would you call that a 6 or 7?” Such responses are in Quora threads like the one entitled, “What do doctors think of patients who describe pain unconventionally?”
To those with chronic pain, “10” is insufficient. “Hurt” is also an understatement. Often, you feel like curling up into a ball to ignore the world around you and optimistically try to forget your own pain. A good day is measured by the ability to hold back tears. Chronic pain begins with your first step out of bed in the morning.
When mobile, just walking from a pharmacy aisle to the cashier feels like a hammer is pounding your head, neck, back, shoulder, hips, legs or feet. It’s the disappointment experienced when someone unintentionally drains you of the remaining 15 minutes you are able to stand.
On a pain scale of 0 to 10, a normal day is 7 to 8. Chronic pain is when your nerves send periodic jolts and twitches that are difficult to mask from puzzled onlookers. It is when, no matter how badly you tell others you feel, they share a “simple” solution with little to no medical qualification. Chronic pain is when the only thing you have to show after thousands of dollars of insurance premiums and copayments is a handicap placard. With chronic pain, your pain has pain.
No Relief in Sight
Now that we have an idea of what chronic pain is, what are doctors going to do about it? With an abundance of caution, very little, if anything, is done at first. Chronic pain sufferers may be told to take over-the-counter pain relievers (NSAID) and rest; exercise to the extent possible; use ice packs for up to 20 minutes. “These things frequently heal on their own.” But just what are “these things?”
You close your lids and it feels like your eyeballs are rotating 180° backwards. A physician suggests increasing the dosage of a particular NSAID as a “safe” recourse. At these high dosages, they help with pain but are far from total relief.
Pester physicians for the third time in as many months and some may take notice. A flurry of x-rays and MRIs that few doctors are capable of reading are ordered. You share the hope that radiologists can elucidate a diagnosis—a viable pain-reducing treatment, if not a cure. In the absence of such, sufferers can become pharmaceutical lab rats. The lethargy from muscle relaxers and sedatives that do not target specific ailments further decrease productivity.
Chronic pain takes motivation, willpower and ambition captive.
Chronic pain continues for years. During all this time you erroneously imagine doctors are researching cures between visits. In reality they have moved on to other patients.
Chronic pain takes motivation, willpower and ambition captive. Eventually, you acquiesce—stop trying to get back to your previous level of performance and settle on the basics. Exerting yourself 10 minutes too long one day can send you into a downward cycle for the next few days.
Your mornings have reached the point when you must chose whether to use your limited mobility to prepare breakfast or to get dressed—not both. Goals concede to incremental tasks—driving to the store; walking to the entrance; finding a motorized cart; conserving enough energy to get to the cashier and back to your vehicle—each is a carefully planned activity. Once you are home, bags need to brought in and food put away. Cooking a meal? That’s another day’s task.
Do you have a friend with chronic pain? Stop asking them how they feel. Let them know how much you love and appreciate them. Offer to perform small tasks that are large to them (big ones too). Wash their car. Drop off dinner. Fix their hair. Share a positive experience. Tell jokes. Don’t make the conversation about pain.
Shifting the Blame
Most doctors are ill-equipped to cure pain. They generally perform their own specialized procedure. It may be an injection, referral to a physical therapist, surgery, or prescribed drug of choice. From the physician’s perspective, (s)he has done all (s)he can. The majority of patients with chronic pain, just migrate from one doctor to the next as each recommends his own specialized procedure.
When the patient explains that the pain limits mobility, a physician assures her that she can lose weight to feel better. “Try some yoga.” Stretching routines are prescribed along with several costly physical therapy appointments.
The patient returns a few days later in more pain than before only to get chastised for not doing enough on her own. Responding to apparent stiffness, an MRI is ordered that lacks any actionable findings.
Unsatisfied with the lack of progress, the patient takes these results to her primary physician who immediately refers her to an osteopath. This doctor recommends walking for 20 minutes per day, topical ointments, ibuprofen, turmeric, glucosamine with chondroitin, flaxseed oil, and a half dozen other vitamins. A mild off-label drug may also be prescribed; though not curative, it can invoke a false sense of wellness or at least put you to sleep.
As the condition worsens, alternate prescriptions are offered and unremarkable x-rays are ordered. Months go by. The patient who is barely able to walk is referred to pain management. Based on the symptoms and range of movement, the surgeon tries cortisone injections. Other injection therapies are recommended.
“It’s hurting everywhere with different symptoms – tingling somewhere, sharp shooting pain in another place and cramping in yet another spot but [because] it is difficult to explain all this, I say “I am tired.'” – Lakshmi R.
From the beginning, this patient was blamed for her condition. Overconfidence and auto-pilot diagnosis can extend patient suffering much longer than is required. Is it too much ask for physicians to consult other professionals? Have they become so good at one treatment that they endeavor to fit all patients within the same mold?
A Physician’s Active Role
Arthritis, degenerative discs, facet joint syndrome, fibromyalgia, Ehlers-Danlos syndrome, certain diseases or trauma can cause chronic pain. Rare diseases are particularly challenging. It requires a heightened level of support when a patient is told that only 5 percent of the population has this condition and even fewer doctors have any experience treating it. In this group, we should also include chronic fatigue syndrome—a condition often belittled and measured by an able-bodied person’s circumstance. For these patients, keeping their heads upright or expressing a complete thought can be a challenge.
Perhaps we need to coin a new phrase: Patients deserve chronic cures.
Any healing must be prefaced with empathy followed by an accurate diagnosis. Patients appreciate doctors who systematically identify a cause in a timely fashion. Is the pain a result of a bone fracture, nerve impingement or inflammation? Is there an environmental trigger? Can a treatment be directed at the cause rather than the symptom?
It is not a good idea to form a dependency upon NSAIDs. They are “anti-androgenic,” meaning they disrupt male hormones, explained David M. Kristensen, study co-author and a senior scientist in the Department of Neurology at Copenhagen University Hospital. Ibuprofen had “the broadest endocrine-disturbing properties identified so far in men.” They can also damage vital organs.
Perhaps we need to coin a new phrase: Patients deserve chronic cures. Their pain doesn’t leave when they exit the exam room. It doesn’t end because they take ibuprofen. Patients cling to hope and look to doctors for victory over their embodied oppressors. In many cases a viable remedy is available, but yet to be matched to the ailment.
Will you be the one that makes a difference?
Watch a creative Facebook video by The Mighty painting red to yellow colors on patients describing their pain. Studies have found that some psychotherapy can be as effective as surgery for relieving chronic pain because psychological treatments for pain can alter how the brain processes pain sensations. Doctors are exploring virtual reality pain treatments with patients.
With high premiums and co-pays, many patients exhaust their funds by the time they finally reach the threshold of treatment. Can patients receive better health care? They deserve better. To the physicians we ask, will you be the one that makes a difference in the lives of these superheroes?