Written by: Bonnie Feldman, DDS, MBA, Anna Simon, Ellen M. Martin
Obtaining appropriate diagnosis, effective treatment, and quality care for autoimmune and chronic conditions can be quite challenging. If you have experienced such struggles, then you are not alone. Statistics show that more than 50 million adults in the US suffer from autoimmune diseases… so why does it remain so difficult to find the right resources and management options for these conditions?
We believe sharing information directly with patients (or people who suspect they have autoimmunity issues) is one way to help. At Your Autoimmunity Connection, our goal is to shed light upon the current state of autoimmune diseases – from patient stories to updated statistics and emerging research – in order to move us all towards tackling this invisible epidemic.
This month, we shine our spotlight on fibromyalgia. Read on to become connected with available statistics, research initiatives, supportive patient communities, and other resources. And check out our Facebook page and forum for more autoimmune-related updates!
What is fibromyalgia?
Fibromyalgia is a chronic disorder characterized by widespread but elusive musculoskeletal pain and tenderness to touch. Symptoms may come and go or move around from one part of the body to another. Additional symptoms include fatigue, sleep, mood, and memory issues. Causes are unclear; the disease is neither a classic autoimmune or inflammatory reaction, nor is it a joint or muscle disorder, but may rather be a neurological hypersensitivity condition (Central Pain Amplification disorder).
While the cause is unknown, potential triggers include genetics, infections, physical or psychological trauma, and stress. Fibromyalgia is also four times more common in women, and is more likely in patients with pre-existing osteoarthritis, rheumatoid arthritis, or lupus. Similarly, patients with fibromyalgia are at higher risk for certain other conditions, such as IBS, interstitial cystitis and migraines.
Not very long ago, fibromyalgia was controversial and many physicians dismissed patients, especially women, as merely “psychosomatic”. This has changed for the better; however, because there are no diagnostic blood or imaging tests for fibromyalgia, diagnosis is based on the patient’s description of symptoms and the physician’s observation of tenderness to pressure. Therefore, it is very tough to diagnose. A diagnosis of fibromyalgia usually requires that widespread pain persists for over three months, and other conditions that could cause this pain must be ruled out.
Currently, there is no cure for fibromyalgia, but medications and self-care can help tame and control symptoms. Medications prescribed include pain relievers, antidepressants, and anti-seizure drugs. Therapy, stress reduction, sleep improvement, exercise, movement therapy, and a healthy diet can help manage symptoms as well.
What do the statistics show?
According to the National Fibromyalgia Association, about 10 million Americans and roughly 3-6% of people worldwide have fibromyalgia.
- Fibromyalgia is about 4 times more common in women than men.
- Diagnosis is most often between the ages of 20-50, although the disease affects people of all ages.
- Genetics has been shown to influence the risk, that is, there are family patterns that suggest inheritance, although no genes have yet been identified.
Connecting you with resources
Whether you are living with fibromyalgia, have a loved one who is, or are generally interested, the good news is that a wide array of resources are available to educate the public and guide patients in their journeys toward restoring optimal wellbeing. As Your Autoimmunity Connection, we seek valuable resources, from comprehensive reviews to research publications, clinical trial openings, patient support groups, and more to share with you.
Brush up on the basics or dive deeper
With both genetic and environmental influences contributing to onset, pinpointing precise causes of fibromyalgia can be challenging. The following resources will guide you through risk factors, possible causes, treatment options, lifestyle modifications, potential health complications, and more.
- Women are at higher risk than men.
- Fibromyalgia is more common in those who have a relative with the condition.
- Having a rheumatic disease such as osteoarthritis, rheumatoid arthritis, or lupus may increase risk.
- Antidepressants that act on norepinephrine and serotonin pathways, e.g., duloxetine and milnacipram, or trycyclics like amitriptyline and cyclobenzaprine.
- Anti-seizure drugs: pregabalin and gabapentin.
- Pain relievers: NSAIDS do not relieve fibromyalgia pain, but do treat pain triggers such as arthritis in patients that have comorbid conditions. Opioids are strongly not recommended.
- GABA or benzodiazepine sleep medicines are also not recommended.
- Therapy or counseling.
- Stress relief methods, including meditation.
- Getting ample sleep, and therapy for sleep disorders.
- Exercising on a regular basis.
- Eating healthy foods: other than a balanced diet high in vegetables, fruit, and protein, observing what you eat may help identify trigger foods. Try these food hacks here!
Become an expert on all things fibromyalgia:
- National Fibromyalgia Association:
- Learn about what fibromyalgia is and find support communities.
- Mayo Clinic:
- Read about common symptoms, causes, diagnosis, and treatment options.
- American College of Rheumatology:
- This site offers a good overview of the disease with fast facts and easy-to-navigate information.
- National Fibromyalgia & Chronic Pain Association
- Delve deeper into the history and science behind fibromyalgia.
Strengthen your support system
There is strength in numbers! Beyond connecting patients to resources, we believe it is incredibly important to connect patients with one another. Whether you have already developed a wide circle of support, are in need of a community, or are looking for an opportunity to voice your experiences or offer advice to others, the following groups may provide you with solidarity and support:
- National Fibromyalgia Association:
- Join their community, discover fibromyalgia-related events, and more.
- Living with Fibro:
- This is an online forum where you can connect with other patients.
- National Fibromyalgia & Chronic Pain Association:
- Search for support groups by state.
- Fibromyalgia Forums
- This volunteer-driven support site is a place to provide fibromyalgia help, exchange information, provide moral support, and share information and helpful tips.
- Fibromyalgia support groups on Facebook:
Hope for a cure: fibromyalgia research
We’ve picked out a few of our favorite research resources – so you can follow recent findings, become informed of future directions, and tap into your potential for involvement as a patient:
- Scleroderma Research Foundation: Funded research
- Look at the different research projects this organization is currently funding.
- Fibromyalgia News Today: News and columns
- Explore studies, columns, current experimental treatments.
- WebMD: News features
- Check out WebMD’s articles on fibromyalgia.
- Medical News Today: Fibromyalgia research
- The latest fibromyalgia research from prestigious universities and journals throughout the world.
All in all, we hope that shining the spotlight on fibromyalgia this month connects you with beneficial resources and information, but we would like to emphasize the need to take a holistic approach in tackling the autoimmune/chronic disease epidemic. By looking at all autoimmune and chronic diseases together, we can move away from the fragmented statistics that hide the magnitude of the problem and towards concerted action in reshaping research, diagnosis, and treatment.
Get acquainted with Your Autoimmunity Connection
- Check out our blog at www.drbonnie360.com for all things autoimmune – from updates in research to possible lifestyle modifications, patient stories, and more.
- Find us on Facebook here, or join our Facebook Forum to connect with patients across all autoimmune diseases.
- Read our patient guide on How to Achieve Your Optimal Wellbeing
- Take a look at our Guide to Movement Therapy
- Check out our other spotlights here