Managing pain is an essential part of living with spondylitis, yet many people with the condition are treated like drug seekers when they request or take drugs for pain relief. The terms “drug seeker” and “drug seeking” are used in the medical profession to describe people who try to acquire prescription medications for inappropriate use.

MySpondylitisTeam members often express their frustration with professionals and other people who perceive them as drug misusers and who do not seem to understand the difficulties of dealing with chronic pain.

“Can anyone tell me how to explain to my children that I am not a drug addict because I have to take hydrocortisone to ease the pain in my body? I have had five back surgeries, a knee replacement, and a hip replacement,” one member said. “I suffer from chronic pain every day and night.”

“Tonight I’m in severe pain to the point I want to go to the ER, but when/if you go there they think you are a drug seeker,” a member wrote. Another member described a similar experience with their primary care physician (PCP). “My PCP actually wrote ‘drug-seeking behavior’ in my chart, and now if I go to the ER they see that and refuse to give anything for pain,” they said.

The good news is that you and your health care provider can likely both engage in better communication around your experience of spondylitis pain so that you can each leave the appointment feeling more confident in the decisions made.

Spondylitis and Chronic Pain

Spondylitis, including ankylosing spondylitis (AS) and nonradiographic axial spondyloarthritis (nr-axSpA), is a type of inflammatory back pain. Spondylitis is a musculoskeletal condition that can be difficult to diagnose and is associated with chronic low back pain, spinal stiffness, impaired mobility, constipation, and reduced quality of life.

Organs such as the intestine, skin, and eyes can also be affected by spondylitis. The condition is associated with inflammatory bowel disease, psoriasis, uveitis (eye inflammation), and dactylitis (swollen joints in fingers and toes). People with spondylitis may have a higher risk for painful secondary osteoarthritis. The peripheral nervous system may also be affected and cause neuropathic pain (nerve pain in the hands and feet that causes uncomfortable tingling or numbness).

Although there is not yet a cure for spondylitis, symptoms are typically managed with exercise, physical therapy, or nonsteroidal anti-inflammatory drugs (NSAIDs), such as Naprosyn (naproxen) or indomethacin, sold as Indocin and Tivorbex. If NSAID drugs are not effective, biologic drugs, such as TNF inhibitors or IL-17 inhibitors, may be used to target proteins that are associated with dysfunction in the immune system.

Pain and other symptoms may also be managed with the medications sulfasalazine, methotrexate, or corticosteroids. The treatment of pain, however, does not slow the progression of the disease or prevent permanent damage to joints or vertebrae.

The Trouble With Pain Management and Controlled Substances

Prescription drugs such as opioids, opiates, antidepressants, anxiolytics (anti-anxiety medication), benzodiazepines (muscle relaxers), and other psychoactive drugs are sometimes prescribed for spondylitis when acute pain persists.

These drugs are controlled substances that have a high risk for substance abuse and other serious side effects. Chronic opioid use can lead to dependency, withdrawal symptoms, or overdose. In fact, the opioid overdose epidemic has been deemed a public health crisis by the Centers for Disease Control and Prevention.

Many prescribers are wary of opioid medications such as fentanyl, methadone, Vicodin (hydrocodone), or OxyContin (oxycodone), as well as other non-opioid drugs that have a risk for misuse.

One MySpondylitisTeam member expressed their concerns about legitimate access to pain medicine in light of drug abuse, noting that since the U.S. Food and Drug Administration “has cracked down due to the opioid epidemic, those of us who are REALLY in pain cannot get pain medication.”

Another member wrote about their issues with pain control. “They took my morphine away two years ago because of the opiate crisis,” they said. “I had no crisis other than pain, and I did not ever abuse my opiates.”

“Pain is difficult, and doctors and pharmacies make me feel like a drug addict just to get pain meds,” another member shared.

Talking To Your Doctor About Pain Relief

Open and honest communication with clinicians about pain is essential for people with spondylitis. It’s all too common for people with pain to feel they are not taken seriously by health care providers. MySpondylitisTeam members are familiar with this experience.

“Has anyone ever had a doctor — a so-called professional — look at you like you are crazy? Or some kind of drug seeker?” a member asked. “THAT, my friends, was one of the hardest, most depressing times in my journey — to be doubted while pain is literally killing you.”

Another member expressed a similar situation. “I went to the ER with the worst pain in my life,” they said. “The doctor and nurse both thought I was drug seeking only, treated me like s---, and just let me lay there in pain all day. Worst experience of my life.”

“I’ve had several appointments over the last few days, having a recent diagnosis. I feel like I am being looked upon as a drug seeker,” wrote a member. “Makes me wonder if some of the doctors understand what this pain is like.”

You shouldn’t have to suffer. However, with the right approach, you can communicate more effectively with your health care team about your very real pain management needs.

Tips for Better Communication About Pain

You can prepare for a conversation about treatment options for pain before you have your next doctor’s appointment. Start by taking notes on how pain affects you, and bring a list of topics you would like to discuss about your care. Here are some tips for effective communication:

• When discussing your pain on a scale of 1 to 10, be honest. Don’t minimize your pain.
• Tell your doctor exactly how pain limits your daily activities and physical or emotional well-being.
• Let your doctor know what your goals are with a treatment plan, such as getting back to work or being able to exercise.
• Discuss complementary therapies for pain, such as acupuncture, medical marijuana, or biofeedback.

A MySpondylitisTeam member had these encouraging words: “It took me 14 years to get a diagnosis. I was looked at as a drug seeker (which I wasn’t). I got diagnosed last year. Thankfully, I finally have doctors who understand AS!”

Talk to your rheumatologist or primary care doctor about referrals for outpatient clinical practices that specialize in multidisciplinary pain management for people with chronic pain. You may want to request follow-up visits to monitor ongoing issues with pain. Your health care provider can also provide referrals for mental health treatment if pain is causing stress, anxiety, or depression.

“Advocate for yourself,” a member urged. “I am so thankful that I have found a conservative but understanding pain management doctor! They are out there. You just have to find the right one who truly cares.”

Talk With Others Who Understand

MySpondylitisTeam is the social network for people with spondylitis and their loved ones. On MySpondylitisTeam, more than 69,000 members come together to ask questions, give advice, and share their stories with others who understand life with spondylitis.

Have you ever been treated like a drug seeker when trying to manage your pain? Share your experience in the comments below, or start a conversation by posting on MySpondylitisTeam.