These suggestions are provided to help Physicians assist patients in managing their symptoms while we continue to search for better treatments and a cure.
Physical Therapy in a warm therapy pool. This allows patients who are unable to exercise on land to move more freely without or with less pain. This is highly advocated by those patients who have access to it.
Heat / Cold applications help with pain and inflammation. Easy to use everyday articles found helpful are microwaveable heating pads, and other heat that is controlled to prevent burns in those who also have Neuropathy.
Chair Yoga, gentle exercise program, stretching, walking, water aerobics, Weighted pads, blankets
Topicals including capsaicin, lidocaine, Voltaren, and other OTC medications.
Vagus Nerve—Irritation of this nerve has been found to exacerbate several symptoms of Fibromyalgia. Focusing on calming this nerve has been helpful at relieving symptoms and is a target of integrative pain therapies.
Anti-Inflammatory Diet helps to eliminate the pain of inflammation. The Mediterranean Diet has been cited as one of the healthiest diets.
Pre-Diabetes is one of several risk factors for Small Fiber Neuropathy. Others may include alcohol and autoimmune disease such as Sarcoidosis and Sjögren’s syndrome.
The gluten connection—Some patients have found relief from eliminating gluten. Other considerations are avoiding wheat that has been treated with chemicals to hasten processing, and looking toward organic production.
Mononucleosis / Epstein Barr—the debate continues on the relationship of viruses and Fibromyalgia. Long Covid has recently brought attention to chronic fatigue and Fibromyalgia- like symptoms. Research toward Long Covid is currently one of our best potential avenues for learning more about Fibromyalgia.
Occupational Therapy—we can still do what we’ve always done—but differently. Occupational Therapy can focus on strengthening muscles, improving mobility, and using mobility aids.
Sleep disturbances—exacerbate pain and brain fog. Sleep aids can include adequate pain management, melatonin, relaxation exercises, positive thoughts, microwaveable heating pads (that cool automatically), room-darkening window covers, appropriate mattress, proper diet, eliminating screen time, and avoiding exercise, alcohol, or stimulants before bed.
Facebook Groups:
FibroNY is a Facebook page of research, resources, inspiration and encouragement for patients created by Sue Shipe. http://www.facebook.com/FibroNY
“What Works for Fibromyalgia” and “Fed Up With Fatigue” are Facebook groups, created and moderated by Donna Gregory (previous award-winning journalist) that have several thousand followers and are helpful to many patients. Here patients can discuss issues such as side-effects of medications, share what works, and learn about recent research, new products, and clinical trials. With few active support groups meeting in person, these groups provide valuable support.
Comfortable clothing and supportive footwear. Many patients suffer with Allydonia. Touching sheets or tags in clothing, or seams in socks, that might normally cause irritation, can cause pain.
Heated steering wheels in cars can be especially helpful for those with Raynaud’s phenomenon or Disease. Heated seats can help with back pain.
Sunscreen and products for sensitive skin. Sunglasses and glare avoidance. Some medications react to the sun, and some patients are sensitive to UV.
Physical Therapy including Myofascial Release, Cranial Sacral, Gentle Massage, Yoga as tolerated, exercise as tolerated
Integrative Pain Management: to include both traditional and complementary therapies
Functional Medicine— Functional medicine is a systems biology–based approach that focuses on identifying and addressing the root cause of disease. Each symptom or differential diagnosis may be one of many contributing to an individual’s illness. www.ifm.org
Energy Medicine:
Barbara Brennan is the author of Hands of Light. A former NASA scientist, her books and teaching are an important adjunct modality. https://en.wikipedia.org/wiki/Barbara_Brennan
Reiki is a gentle non-invasive therapy many find helpful. It is sometimes additional training for nurses and other healthcare professionals, and requested in hospitals.
Spero Clinic—The Spero Clinic, located in Arkansas, is experiencing positive results with many illnesses resistant to traditional treatment. These illnesses include CRPS, POTS, Ehlers-Danlos Syndrome, neuropathy, dysautonomia, and gastropheresis. Dr. Katinka van der Merwe, DC, is the founder of Spero Clinic which takes patients from all around the world. Her book, Taming the Beast: A Guide to Conquering Fibromyalgia, is a resource for both Physicians and patients. https://thesperoclinic.com
Assistive devices can improve quality of life for daily activities such as yard work, reaching for articles, putting on shoes or socks, opening cans, keeping extremities warm, and assisting balance. Many of these are available on Amazon.
Trekking Poles may offer better assistance than canes for walking on occasions where pain and balance issues are present.
Braces and compression socks and gloves can be helpful with pain and edema.
Medications: Three medications have been approved for use for Fibromyalgia: Lyrica, Cymbalta, and Savella. While helpful, many patients are unable to tolerate their side effects.
Low-Dose Naltrexone is being used to treat Fibromyalgia. It’s important to “start low and go slow” with this medication, with many patients beginning with 1 mg. Daily. This is not covered by insurance, and must be obtained through a compounding pharmacy. The cost of complementary therapies that are helpful but not covered by insurance makes access unequal.
Medical Cannabis is being used by many patients in states where its use is legal and approved for chronic pain and Irritable Bowel Syndrome. Much research is needed to ensure safety. This needs to be covered by insurance as it not not accessible to many due to cost. — https://bedrocan.com/fibromyalgia-and-medicinal-cannabis-an-update/
Any use of marijuana linked to higher risk of heart attack and stroke, study says | CNN: https://www.cnn.com/2024/02/28/health/marijuana-heart-attack-stroke-study-wellness/index.html
Supplements often used by Fibromyalgia patients:
Vitamin D3
Vitamin B
Magnesium
Omega 3
Patients need guidance on which supplements are safe and effective, and do not interfere with their medications. Patients should always be required to include supplements with their medication lists.
Counseling. While Depression and Anxiety may be associated with Fibromyalgia, it is debatable whether it is caused by Fibromyalgia, or the fear of loss of abilities to live a normal life. Young women fear being unable to bear or raise a child. Many work until they no longer can due to pain, fatigue, and bring fog. The burden on the Social Security Disability system, and family systems, will greatly improve with better understanding of this syndrome, early diagnosis, appropriate pain management, and more research toward finding the causes and preventing them.
Myofascial Release is a gentle therapeutic practice, frequently offered by physical therapists or massage therapists specially trained in myofascial release. Many patients have found great therapeutic results with therapists knowledgeable about Fibromyalgia sensitivities and trained in this technique. For more information about John Barnes and Myofascial Release, please see https://www.myofascialrelease.com/about/
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