This story is part of Pain in America, a nine-part series looking at some of the underlying causes of the opioid addiction crisis and how we treat pain.
When I had my first fibromyalgia “flare” in 2011, the succession of symptoms —pain in most of my body, along with cognitive and digestive issues — indicated there was a larger problem begging to be acknowledged that I had long left ignored.
First, though, I had to figure out how to articulate it correctly and know where to find appropriate care.
As the pain changed rapidly, I bopped in and out of emergency rooms for an entire summer with no answers or overall improvement. I experienced flank pain that was followed by a throb in my legs, before it morphed into chest pain, and then head sensitivity so severe I could not stand to lay on a pillow. I had raging anxiety, a foggy mind and continual stomach problems. All my test results were pristine.
As a 19-year-old in seemingly perfect clinical health, it was hard to get a diagnosis, let alone treatment. Instead, some doctors questioned how sick I really was. Some providers sent me for moonshot tests, just to rule everything out, and suggested I come back in a few months if there was no improvement. Others didn’t know what to tell me, other than to follow up with my primary care doctor. When I did, he wasn’t well-equipped to answer questions about pain. I saw no improvement that year.
It took me months from the flare’s onset to get on a treatment plan that worked to improve the quality of life — well after doctors suspected I may have had fibromyalgia and its constellation of other conditions, including irritable bowel syndrome, interstitial cystitis, anxiety and more.
Little did I know that finding a diagnosis and treatment for chronic pain is almost always a long process full of questions, trial and error.
The trouble with treatment and how it’s rarely an easy fix
Chronic pain is defined, clinically, as pain lasting for three months or longer, explained Sara Davin, a pain psychologist at the Cleveland Clinic. But unlike strep throat or a sprained ankle, there’s often no clear cause and treatment available to patients.
“It’s a complex, challenging field, with no one-size-fits-all treatment,” she said. “Provider and patient must accept multiple trials of different types of treatment, and must think outside the box.”
It’s also not always easy for patients to accept or understand that their problem may not have a clear treatment, or may not be curable.
“There’s a resistance there, sometimes — and a stigma, now with the opioid epidemic,” Davin said. “Patients can feel mistreated and misunderstood. They don’t know why they have been left behind and aren’t being prescribed.”
We have an expectation of getting prescriptions for relief of symptoms, but painkillers like opioids are not always the answer. They are often best left for severe or acute pain problems, like cancer or a leg fracture, said David A. Edwards, division chief of pain medicine at Vanderbilt University.
“There are several reasons for this. They can be dangerous, because they can stop you from breathing if you take too much. Another reason is that they can lose their benefit over time as your body becomes tolerant to them,” Edwards said.
According to David Walega, chief of the pain division at Northwestern University’s Feinberg School of Medicine, “you should be offered alternatives more” than opioids, “even though there are times when a short, monitored course of opioid analgesics is appropriate,” he said. This should be monitored closely by the prescriber, starting at a low dose.
Asking the right questions
The key to getting any treatment for chronic pain is knowing there’s no such thing as asking too many questions.
If your doctor chooses tests or another treatment over pain pills, ask what you’re being tested for or treated for and start doing research ― know what is being tried out, and why. There will be something new to research after each new appointment, even if you don’t stay with your first physician. You also shouldn’t be afraid to ask for a referral.
“We’ve got a big problem of primary care providers not having the training and experience to screen for, evaluate and treat chronic pain,” Walega said. “Patient that can ask, ‘Hey can I see a pain specialist for an evaluation?’ are ahead in their treatment. It’s not just a transfer of care, it usually gives the patient an opportunity to tell the whole story, rather than the primary care provider who has 7 to 10 minutes to solve every problem [they have].”
You can also request more testing. A specialist will also be able to perform a comprehensive evaluation that will take your other symptoms ― like migraines, IBS or whatever else ― into consideration as well.
Make sure your doctor is asking you the right questions, too. It’s crucial to find a provider or team of providers who hear you out, so feel empowered to leave a doctor who isn’t listening or offering unique advice.
Walega said a good provider will listen to you about what’s working and what isn’t, what you want to try and what you don’t. Make sure your provider takes your “background, goals, expectations and individual circumstances” into account as well, he explained.
“A provider should be instilling confidence in patient, making good eye contact, setting expectations, informed and shared decision making with the patient,” Walega said.
Learn everything you can about your chronic condition, and your doctor’s approach to treating pain. Edwards suggested asking your doctor if there is a source to the pain, and if that source can be determined, as well as what types of medication and non-medication treatments are available.
“You can ask, ‘Is the type of pain I have likely to go away with treatment or should I anticipate long-term treatment?’” he said. “‘What is plan A and plan B? What is the best thing that I can do between now and next visit? What can I do to manage this over my life?’”
Research on your own, before and after appointments. Check out hospital pages (like Mayo Clinic, Michigan Medicine, Johns Hopkins and Cleveland Clinic) for information about your condition, as well as research and expert-based sources like the National Institutes of Health.
When you have an appointment, ask your doctor to explain your condition, what can be done to treat it, and what reasonable expectations of improvement are for you. If your hospital system has a patient portal to communicate with your physician team, use it to ask questions and manage ongoing problems. (I use my patient portal, as a chronic pain patient, at least a few times a week.)
If you are prescribed a medication, make sure you know how it works to help your pain, as well as your dosage ― especially if it’s an opioid.
“You should ask if your dose of opioid is considered a high dose, as well as if you should have Narcan in your house,” Edwards said. “Narcan is the antidote to opioid overdose, and it can be used even if another person accidentally takes your opioid pills and overdoses.”
And don’t be afraid to get a second opinion if you don’t feel well-informed about your condition, or the treatment process. My first primary care doctor wasn’t the best-suited manager of my care, but my third one was.
Giving it time, trial and error
For me, it took two full years for my trial-and-error treatment to turn into healthy routines that stabilized my symptoms. It was agonizing.
It helps to be open-minded about the many potential treatments that may work for you to varying degrees. Walega said injections or ablation procedures can be extremely helpful for some forms of pain, as well as neuromodulation, which involves directly stimulating nerves (often using electrical impulses) to improve pain relief.
Edwards cites physical activity like walking and yoga, as well as ice, heat, massage, and even distraction as crucial strategies for managing pain.
“Formalized manual therapies can be extremely helpful, such as physical therapy — even in a warm pool, called aqua therapy — chiropractics, and acupuncture,” Edwards added.
Take care of your mental health, too.
“Pain is depressing and can cause stress, and depression and stress can make pain worse,” Edwards said.
Treat both mental and physical health conditions for the best results, and consider psychological wellness like cognitive behavior therapy, biofeedback, and mindfulness to holistically manage your condition in the long-term.
One of the most important things, for me, has been remembering that curing the pain is not the goal — even on good days, when my pain is minimal. Minding the journey and maintaining balance is the goal, which has ultimately led to far more manageable days than not.
There will be good days, and bad days, and you’ll make adjustments. Make sure you’re surrounding yourself with a supportive care team, supportive friends and family who can help you through the bad stretches. After time, hopefully those stretches get shorter and shorter.