When you’re first diagnosed with a complex condition like CRPS (or any chronic illness), it’s easy to feel lost in a maze of referrals, test results, waiting lists, and unanswered questions. Medical appointments quickly become a full-time job, and figuring out who does what—and why—can be overwhelming. This post is here to help you find your footing.

START WITH SUPPORT: BEHAVIORAL HEALTH SERVICES & PATIENT COORDINATORS

Most health insurance plans offer free one-on-one help through Behavioral Health Services or Medical Case Managers. Sometimes they go by names like Patient Coordinators or Health Navigators. These professionals can walk you through the healthcare system, help manage appointments, answer benefit questions, and even advocate for your care.

If you haven’t been offered one, ask your insurance provider directly. They are an incredibly helpful resource—especially when you’re feeling too fatigued or mentally drained to make all the calls yourself.

YOU'LL NEED A PAIN DOCTOR

If you have CRPS or chronic pain, a pain management doctor is a must. They are the specialists most experienced in prescribing the medications that may help reduce symptoms. That said, no medication works the same for everyone, and many of us remain in pain despite trying multiple options.

Be aware that pain medications often come with significant side effects, and not every provider is comfortable prescribing them. This makes having a pain specialist even more important—they’re the most equipped to monitor and manage your treatment plan safely.

DON'T NEGLECT MENTAL HEALTH: THERAPISTS, PSYCHIATRISTS & COUNSELORS

Chronic pain doesn’t just affect your body—it deeply affects your mental and emotional well-being. Everyone with this condition—and their families—can benefit from regular emotional support. Whether it’s a therapist, counselor, or psychiatrist, having someone outside your inner circle to talk to can make a major difference.

Depression and anxiety are common and expected. If you find yourself crying in bed, feeling hopeless, or constantly overwhelmed, you need help—and that’s okay. Getting mental health support isn’t a weakness. It’s one of the strongest moves you can make for your healing journey. Managing your emotional health is one of the best ways to lessen flare-ups and build resilience.

SPECIALISTS & TESTS: COME PREPARED

You’ll likely see a long list of specialists:

• Rheumatologist

• Neurologist

• Primary care physician

• Radiologists for MRIs, CT scans

• Labs for blood tests

• Electrophysiologists for EMGs

• Nuclear medicine specialists for three-phase bone scans

• Gastroenterologist – Focuses on digestion and gut health

These appointments are time-consuming and expensive. It’s crucial to go in prepared. Write down your symptoms, list your current medications, and bring a clear list of questions to ask each doctor. This not only saves time but ensures you don’t forget anything important during a stressful visit.

(We’ll provide a link soon to help you prepare for your appointments.)

BE PREPARED FOR DISAPPOINTMENT

CRPS is rare, and many providers have never seen a case before. Even the best doctors may not know what to do.

You’ll also encounter long wait times, delayed referrals, dismissive attitudes, or vague answers. It can be devastating. These moments can crush your spirit—but they can also create space for self-care. Use the waiting time to focus on your mental health, stress reduction, and nutrition—each one of these plays a vital role in reducing flares and strengthening your body.

YOU'RE NOT ALONE

There’s no perfect map through the system. But there are others who’ve walked this path before you. Lean on their experiences. Ask for help. And remember—you don’t have to figure everything out all at once. One step at a time.