I have lived with for decades. First, my episodic migraine evolved to chronic intractable migraine then I developed shingles and resulting post-herpetic neuralgia as well as small fiber polyneuropathy. Along this journey, I have learned lessons as a pain patient that are informed by my training as a physician.
1. First - decide that you want to do something about your pain and seek the best care possible. For years I suffered with near-daily headaches tinkering with over-the-counter regimens and dietary changes before deciding to seek professional help. I had to decide that the current situation was unacceptable. I called around to headache specialists at top institutions and asked for recommendations on where to seek care and eventually sought care at a specialty headache clinic. This specialty clinic offered interventions not available at my local primary care office.
2. Be organized. Come to all appointments with a list of all your medications and dosages. Bring a list of all the treatments you have tried and their effect. Often the newer and pricier treatments have insurance requirements and if the doctors know what you’ve tried and failed in the past they can pursue the next steps you qualify for.
3. Consider a pain specialist who does interventions and not just prescriptions. Some pain specialists only do interventions and others only prescribe. Some do both. I have found interventions such as field blocks, nerve blocks, epidurals, and radio-frequency ablations helpful. They have allowed me to rely less on and live a better life.
4. Consider approaches as long as they don’t break the bank and don’t interfere with traditional approaches. I tried acupuncture and take supplements for example.
5. Consider allied health approaches. I tried physical and osteopathic approaches. While physical therapy doesn’t help the nerve pain it helps with the muscle pain resulting from unbalanced movement and spasms from the nerve pain. Even if not in a formal physical therapy program some form of gentle movement such as yoga, walking, or exercise biking is beneficial.
6. Consider mental approaches. or acceptance-commitment therapy has proven efficacy. The help of a health psychologist specializing in pain was hugely helpful for me. Learning to live your life with the involvement of pain that may not go away is tough to navigate on your own.
7. Consider . A tool that is free and always with you, it can greatly lessen pain. MBSR programs exist at many medical centers and online and online apps such as Calm, Headspace, and Insight Timer make it easy.
Once you decide to do something about your pain, become an active, organized advocate for yourself. Work in with your health care team to come up with a pain plan that works.