What Undiagnosed Pain Patients Can Do To Find Answers

If you’re still traveling from doctor to doctor, hoping for a diagnosis, take heart: you’re not alone. Unfortunately, too many undiagnosed pain patients go years without figuring out what’s causing their condition or symptoms. If you’re one of these patients, there are things you can do to improve your chances.

Why are there so many undiagnosed pain patients? 

Consider the story of one 50-year-old Oregon woman who landed in the hospital 60 times over the course of 15 years because of her mysterious symptoms that included stomach pain, dizziness, and nausea. All those hospital visits, rounds of testing, and a never-ending parade of doctors, and still no diagnosis, reports Everyday Health.

While chronic pain is considered a disorder in itself, it’s also an umbrella term for the numerous conditions associated with it. Back pain, leg pain, pain from cancer or diabetes, fibromyalgia—each of these conditions are worlds within themselves, with different causes and responses to treatments.

Even if someone receives a diagnosis, sometimes that’s the starting point and not the end. Think of the wide world of often-painful autoimmune disorders, which are typically difficult to diagnose and highly individualized. One patient might find a special type of diet works wonders while another may need specialized treatments like acupuncture.

Even conditions that sound specific, like irritable bowel syndrome, can be catch-all disorders. IBS is characterized by digestive troubles, but patients often develop these troubles for various reasons, necessitating different treatments. Dr. David Clarke, author of the book They Can’t Find Anything Wrong! tells Everyday Health:

“It is enormously frustrating for a patient with real pain not to know the cause, and they may even question their own sanity.”

Should I visit a pain doctor or family doctor?

For many people with chronic pain, the family doctor is the first stop on the journey to find answers. About 63% of people with ongoing pain have visited their family doctor at some point for answers, according to the American Academy of Pain Medicine.

And while 45% of chronic pain patients have visited some type of specialist, only 15% have sought the advice of a pain doctor.

Family doctors frequently prescribe medication, whether over-the-counter or prescription. This approach may work for those with mild or moderate pain that you can’t manage on your own, according to WebMD. However, pain medication doesn’t always work and even if it does, it’s only a bandage. Medication doesn’t fix any underlying issues that may be causing the pain.

People with moderate to severe pain that is constant should consider visiting either a pain specialist or doctor specializing in the area of the body causing pain, such as a chiropractor for back pain. Pain doctors have the expertise to dive deeper into the underlying causes, and even begin to ferret out some of the lesser-known causes of chronic pain that are often invisible and difficult to detect.

For instance, lifestyle factors such as stress, weight, and physical activity can dramatically influence your experience of pain. The relentless suffering experienced by the Oregon woman from earlier in this article turned out to be caused by stress, says Clarke. He adds:

“In some patients, stress is responsible for 100% of the pain. In others, it is only a minor contributing factor.”

After Clarke worked with the Oregon woman, he soon learned the pain resulted from stress she felt from interacting with her emotionally abusive mother. Once the patient discussed the stress and figured out the dramatic impact it had upon her health, the symptoms stopped, Clarke said.

What you can do to get diagnosed

Unexpressed emotions and related stress are to blame for some cases of un-diagnosable chronic pain. Other times, the pain is from a very physical cause that just needs the right type of testing.

Public relations specialist Alyssa B. suffered from extreme neck pain that wouldn’t relent, no matter how many painkillers her doctors gave her, reports Everyday Health. Finally, after insisting to her doctors, she received an MRI and discovered four herniated discs. Doctors recommended surgery. Alyssa has opted to forgo that option for now and do the best she can with medication and physical therapy.

Alyssa’s story underscores the importance of finding the right doctor, being your own advocate, and not stopping until you find the answers you seek. The journey of all undiagnosed pain patients are different, but there are a few things you can do to increase the likelihood of finding answers.

1. Visit a pain specialist

Family doctors are excellent at what they do, but pain specialists offer a wealth of knowledge outside the scope of family medicine, Everyday Health says. Many family doctors receive only a few hours of education in pain, while pain specialists focus on the topic in school and in practice.

Experienced pain doctors have years of patient case studies to draw information from, increasing the likelihood that you’ll finally find the answers you’re looking for.

2. Keep a pain journal

A pain journal could be a critical resource in helping you and your medical team understand the condition you’re facing and identify the most helpful treatment options.

Track when you feel pain along with your daily stress levels, exercise activities, and food intake. Over time, you’ll be able to analyze this information and potentially identify pain triggers. Maybe you realize that the pain is stress-related after all. Or perhaps you see that a certain food sets it off.

With this information, you’ll develop the ability to tailor your lifestyle to reduce triggers and feel less pain.

3. Participate in your treatment

Studies show that patients who actively participate in feeling better, whether that’s by exercising or researching potential new treatments, have better health outcomes. The web offers an infinite source of information and also the ability to connect with others who, like you, may be having trouble finding a diagnosis or effective treatment.

Multiple applications for your cell phone also help with everything from developing mindfulness—which is beneficial for reducing pain regardless of source—to helping you sleep better.

In the search for answers, you’ll also need to be your own advocate. Demand advanced testing like an MRI if you feel you need one. Switch doctors if you feel yours doesn’t listen or have the time to fully investigate your health condition.

Become the boss of your health, patiently and persistently searching for answers, or at the very least, solutions. Because even if you aren’t able to fully understand your condition, you can still find ways to manage the pain it causes.

4. Become an informed patient online

This tip is among the most important. The amount of health information available to patients has never been greater, thanks to the Internet. Demand is equally high; one in 20 Google searches seeks health information, according to Google. Everyone from independent doctors’ offices to huge medical systems is making authoritative information readily available. That said, the Internet is still the Internet, and not all information is credible. Knowing the difference can help you avoid sites that make unsubstantiated claims.

Learning how to sort through online information is important for optimal health. Patients without high health literacy generally experience worse outcomes than more informed patients, according to the U.S. Department of Health and Human Services.

Here are a few ways you can become a more empowered patient.

Look for new partnerships that improve online health content for patients

Large medical systems like Mayo Clinic, and patient-centered websites like PainDoctor.com, are storehouses of information. These websites are goldmines for patients because the information is generally easy to read and credible.

At the other end are search engines like Google. These filter through the glut of information posted online to rate its usefulness, which includes measures like credibility. Google uses those usefulness ratings to order search engine results.

Now, these two sides are coming together to help a patient get better information. Mayo Clinic recently announced a partnership with Google that has already changed how web viewers see health information online.

When a patient searches for a medical condition in Google, a knowledge box appears on the right side of the screen. Mayo doctors are working with Google to review the information and ensure accuracy.

Searching for “low back pain,” for example, yields a box with an overview of the condition, prevalence rates to let patients know if it’s common or not, symptoms, and possible treatments. Mayo medical editor Dr. Phillip Hagen says:

“I certainly am sensitive to the need for accurate information, so if you take a site like Google, which is a first stop for a lot of people, I’d love it if they can get good, reliable information when they start.”

Credibility is key

Anyone with access to a computer can post information online, making it important for a patient to assess the credibility of information they’re reading.

One easy way to assess authoritativeness is to check out the URL of the website. Sites ending in .gov are great because that information is coming straight from a government agency, and is probably backed by the best experts around. If you’re accessing non-government based websites, make sure that they clearly link their information back to an authoritative source like a government site.

Extensions related to schools, such as .edu, are also generally good. However, be careful because sometimes students will write papers on topics that are posted on a school’s website, leaving the URL sounding official even though the information is not from a doctor or other health care professional.

Avoid this by looking at the URL a little more closely. Information published by individuals will often have a tilde (~) in it. These pages are generally less authoritative than content posted on a clearly branded university page. Also, some schools are not as credible as others, so try to stick to well-known institutions like Harvard or New York University.

Also take care when looking at non-profit sites with URLs ending in .org. Anybody can purchase a .org URL, so that alone does not mean the site is credible. Try to find well-known organizations with boards consisting of doctors. Sometimes smaller groups aren’t as credible or have ulterior motives that aren’t immediately apparent.

And if the information is coming from a person or business, make sure the person has appropriate degrees, like a medical degree or, for example, a registered dietician credential for information related to food.

Find simple information—it exists!

When searching for the latest information about whatever ails you, it’s easy to get sucked into the world of medical jargon. This somehow makes everything sound really scary and complicated.

And while some medical issues truly are complicated, they can always be distilled into easy-to-understand terms. Increasing numbers of health websites are taking it upon themselves to simplify health information for that very reason.

The effort is an important one. A study published in the Australian and New Zealand Journal of Public Health found that most Australians don’t find the information they need because the existing content is too complex.

Even on the simplest issues, like obesity, researchers found that 17 sites formally discussing the condition were difficult to understand. Difficult information makes ideas not only harder to comprehend. It also increases the likelihood that a patient will misinterpret key information, leading to health choices that aren’t in their best interest.

Researchers urged medical health websites to focus on simplicity to continue empowering patients in making good health choices. Mayo’s recently announced partnership with Google is a huge step in that direction.

The bottom line is, if you feel confused or overwhelmed, seek out another source of information. Plenty exists, so find the source that speaks to you.

Look for dates

New medical studies come out every day, and new information sometimes proves old information wrong or incomplete. Check for dates to make sure the information is as accurate as possible.

Ways to verify the date include looking at the bottom of the article or webpage. Many credible, online resources will post a “last updated” date at the bottom of their post or list a copyright date in the footer bar of the webpage.

Get help 

Suffering as an undiagnosed pain patient is a trial no one should suffer through. While these tips may not lead directly to your diagnosis, they could help your doctor see patterns or help you conduct better research online that leads to a diagnosis.

If you were one of those undiagnosed pain patients, what other tips helped you finally get the diagnosis you needed? To talk to a pain specialist, click here to find one in your area.