Complex Cases: When Multiple Diagnoses Make Managing Pain Difficult

By Mariah Leach

Managing a chronic pain condition can be a full-time job. In addition to living with symptoms on a daily basis, individuals living with pain must find providers, understand health insurance, attend appointments, pick up prescriptions, make phone calls, pay bills, and more. But if managing pain and seeking health care is complicated and time-consuming for someone with a single diagnosis, what is it like for those living with multiple conditions?

Christin Veasley found herself in this situation after being diagnosed with multiple pain conditions, including neck, shoulder, and back pain stemming from a crash, as well as vulvodynia.

“Day-to-day life is a lot less predictable,” she shares. “I never really know which condition may be more severe on any given day.”

The impact of managing multiple conditions is also cumulative, which can make coping with her health even more challenging. “It takes a lot of physical and mental stamina to fight against all of this and stay positive and hopeful,” she admits.

Veasley’s pain inspired her to co-found the Chronic Pain Research Alliance, which advocates for individuals—predominantly women—living with chronic overlapping pain conditions (COPCs). Individuals with COPCs have two or more from a list of 10 pain disorders, including vulvodynia, irritable bowel syndrome (IBS), interstitial cystitis/painful bladder syndrome, fibromyalgia, endometriosis, migraine, lower back pain, and more.

The complexity of multiple conditions

According to the Chronic Pain Research Alliance, individuals with COPCs can experience significant delays in accurate diagnosis and effective treatment, which can have serious consequences for their health. Additionally, those trying to manage multiple conditions often face the effects of a fragmented health care system. For example, a woman diagnosed with vulvodynia, IBS, and migraine may need to find, schedule, and consult separately with a gynecologist, gastroenterologist, and neurologist.

To make matters worse, it can be incredibly difficult to get multiple specialists to communicate with one another. “It’s uncommon for one medical professional to manage a person’s complete health care,” Veasley explains. “This means the patient takes on that role, communicating with each doctor and relaying treatment plans and medical advice.” Putting the onus of communication on the individual living with pain can sometimes lead to confusion, and patients can be left without a clear treatment path if they receive conflicting treatment recommendations from different specialists.

This fragmentation presents a challenge to providers, too. David Nagel, MD, specializes in physical medicine and rehabilitation, and has worked closely with people living with chronic pain for more than 35 years. He has experienced the United States’ “broken” health care system and is all too familiar with the artificial barriers that make it more difficult for doctors to care for people.

As an example, Nagel shares that 82% of doctors work in corporate settings, as opposed to 18% when he first began practice in the 1980s. “They have to follow the rules that the institution creates,” he says. “They may have a patient that has multiple needs, but they are only given 10 minutes to see them. In some institutions, they are only allowed to deal with one problem at a time.” Doctors in private practice, like Nagel, don’t have those constraints.

Chronic pain is too often misunderstood and stigmatized, both by the public and by health care providers. This bias can make it even more difficult for people with multiple diagnoses to manage their conditions, especially if they already face other disparities due to factors like race, ethnicity, gender, sexual orientation, age, or size. Experiencing socioeconomic challenges or living in a medically underserved area can make it even more problematic to coordinate and afford a multidisciplinary care team.

Come prepared

So, what can individuals living with multiple diagnoses do to improve their chances of receiving quality care and effective treatment? Do their research. “Find out what experience [a potential specialist] has with complex disabilities,” Nagel suggests. “Getting care is going to cost you time, energy, and money, so you have the right to know what you’re getting into, and doctors have a responsibility to provide this information.”

Once you find a doctor you think is likely to be helpful, prepare for your appointment by making a list of questions and identifying your most urgent concerns. It can also be useful to present a new doctor with a single-page document summarizing your medical history. “You want to provide a succinct presentation of why you are there, and prioritize your biggest needs,” Nagel advises. “Realize that you might need to come back more than once.” It can also be helpful to bring a friend or family member to serve as an advocate, to help you remember what is said during the appointment, and to make sure all your questions are answered.

Nagel also suggests keeping copies of your medical records. Medical practices won’t hold on to your information forever, and those dealing with multiple diagnoses over a lifetime may need to be proactive to make sure their full medical history is preserved. It’s important to read through these records, both to better understand your treatment and to ensure that the information is correct and unbiased.

Unfortunately, some doctors may include statements that could bias other doctors and be harmful to your future care. But you have a right to have inaccurate statements in your medical records changed. Nagel suggests contacting the administrator of that doctor’s practice to point out the information you disagree with and why. “Even if the doctor won’t agree to change your record, you can ask to add your side of the issue to your chart.”

Veasley also recommends educating yourself about your conditions and the possible treatment options, as well as trusting yourself and your instincts. “Keep seeking care until you are heard and believed,” she says.