Question: Healthcare Question: I have fibromyalgia. I was diagnosed in 2000 when I was 23. I have been very lucky to have mostly avoided practitioners who don’t believe it’s a real disease, who think it’s all (and only) in my head. However I am really getting VERY sick of having pain clinics tell me to go to therapy and that they “can’t” develop a pain management plan that allows me to have as predictable a life as possible.

I HAVE gone to therapy—individual therapy, group therapy for trauma, and couple’s therapy. And I still have pain and fibromyalgia.

I take over $350 of supplements per month, cannabidiol, and low dose naltrexone (LDN). Before starting LDN, I was taking tramadol AND Ibuprofen. No one in my area who I’ve asked (hospice nurses, doctors, and therapists) knows of ANYONE who is practicing palliative care for patients who are chronically ill.

I do not have the spoons to be my own case manager and to do all the research. I’m exhausted.    

I DESERVE a decent quality of life. I DESERVE to have access to regular and appropriate pain management. I DESERVE to not have to take a drug test to get a prescription refill.

HOW do I GET IT? How do I find someone who practices palliative care for patients who are chronically ill?
P.S. My oldest daughter was diagnosed with juvenile fibromyalgia syndrome at age 11. My second daughter was diagnosed at 21. I ask this not just for myself. But for my children.

Reply: Hello C. First, let me thank you for writing and for so clearly articulating the human cost of several huge issues that our healthcare system needs to address including: 1) providing optimal care for people living with chronic pain; 2) providing optimal care for people living with fibromyalgia; and 3) integrating palliative care in all settings of care. To put these issues into perspective: about one in five people on the planet experience chronic pain;1 at least one in 50 lives with fibromyalgia;2 and nearly everyone at some point in their life will have an illness or condition that could benefit from a palliative care approach.3 Despite this, our system continues to struggle to support people with chronic pain,4, 5 recognize the impact of fibromyalgia,6 or deliver palliative care on anywhere near the level it should. Tragically, all three of these issues are equally pressing, and equally under-met, for children.7

            I wish there was an easy answer. I’ve given this quite a bit of thought and done some searching. Here is the best advice I can come up with at the moment. If any readers have other ideas or suggestions (or want to call me out on something I recommend that doesn’t work), please add to the comments below. This is a very important question that deserves a good answer. I’ve ordered my responses in general from easy and quick to slow and hard. I would also note that these considerations would also apply to people with another serious chronic illness or symptom who are struggling to find the care they deserve.

  1. Ask for a referral or second opinion: If it was always this easy I’m sure C wouldn’t have written to me, but sometimes your healthcare provider can refer you to a clinic that specializes in fibromyalgia, chronic pain, or palliative care and that can provide you with the support you need. Unfortunately, as noted by C, many parts of the country (and world) don’t have such specialists, or if they do, they may practice medicine in a way that doesn’t feel supportive to you.
  2. Talk to people at in-person or online support groups for your condition: Support groups can be a good way to learn more about your condition and, potentially, to learn about great healthcare providers. As with anything, you should take what you hear with a grain of salt as the best provider for one person may not be a good fit for you.
  3. Contact disease or other patient societies: Disease societies (e.g. National Fibromyalgia Association) may have additional information about your condition and links to find a provider. Be cautious as there are some fringe organizations who may create the appearance of a vetted society to push supplements or other agendas.
  4. Consider traveling to see an expert: If you are unable to get the care you deserve locally, it may be worthwhile to considering traveling to see an expert. This could be seeing someone at an academic or university-based clinic in your state, or could involve traveling to see someone in another state (or even country). If you make a good connection, you may be able to save some miles by: a) using telemedicine; b) seeing that specialist infrequently (e.g. annually) but having them work with your local team to carry out recommendations. There are some institutions (e.g. Mayo Clinic, National Institutes of Health) that even have special programs to try to diagnose your illness if you are still struggling to find a diagnosis.
  5. Reach out to some of the big names doing research on your illness: Depending on the illness you are dealing with, it may be worth your while to see who is doing meaningful clinical research in that area and send them an email. Pubmed and clinicaltrials.gov are two websites that may help you find an expert who is actively doing research. Many of these individuals have a personal interest in helping people with that condition and may also know, through professional networks, of providers to connect to in your region.
  6. Do your own research: As highlighted in other blogs throughout this website, there are helpful and less helpful ways to do your own research. That being said, the more you know about your condition, the more active you can be in shaping your care. I’ve had several patients who have brought new ideas to my attention that were worth pursuing. If you can develop a trusting relationship with your local doctor, you may even be able to get them to improve the care they provide you through conversations and suggestions.
  7. Advocate for change: Our healthcare system can use improvement. There are dozens of ways to advocate for change ranging from educating people in your community about your condition to lobbying congress. I know that this won’t solve C’s issue immediately but hopefully the community of healthcare advocates can work to make a better world of healthcare for C’s children (and grandchildren).

Citations

1.         Mills SEE, Nicolson KP, Smith BH. Chronic pain: a review of its epidemiology and associated factors in population-based studies. Br J Anaesth 2019;123:e273-e283.

2.         Marques AP, Santo A, Berssaneti AA, Matsutani LA, Yuan SLK. Prevalence of fibromyalgia: literature review update. Rev Bras Reumatol Engl Ed 2017;57:356-363.

3.         World Health Organization. WHO Definition of Palliative Care [online]. Available at: https://www.who.int/cancer/palliative/definition/en/. Accessed May 30, 2020.

4.         Collier R. Chronic pain associations struggle to raise awareness of “silent epidemic”. CMAJ 2018;190:E483-E484.

5.         Collier R. “Complainers, malingerers and drug-seekers” – the stigma of living with chronic pain. CMAJ 2018;190:E204-E205.

6.         Briones-Vozmediano E. The social construction of fibromyalgia as a health problem from the perspective of policies, professionals, and patients. Glob Health Action 2017;10:1275191.

7.         Friedrichsdorf SJ, Giordano J, Desai Dakoji K, Warmuth A, Daughtry C, Schulz CA. Chronic Pain in Children and Adolescents: Diagnosis and Treatment of Primary Pain Disorders in Head, Abdomen, Muscles and Joints. Children (Basel) 2016;3.

Image from Andrea Piacquadio.