As Myositis patients encounter negative side effects or lack of results from pharmaceuticals, they often look for other options. Thanks to the increase of information and evidence about alternative and complementary options, many Myositis patients are turning to nutritional supplements, essential oils and other therapies for additional support when dealing with health. Some had been used for centuries but fell into disuse with the invention of modern medicine. We cannot recommend you use any of the following without consulting your doctor but want to share with you some of the information we have found to be recent topics of interest.
Studies have indicated that Curcumin (found in turmeric) might have anti-inflammatory properties and help the body fight against neurodegenerative diseases. I started taking Turmeric this week after my Physiatrist recommended it. He even asked me to make some notes to share with him. He is excited to see if it affects my Myositis. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3183139/
Most Myositis patients limit sun exposure due to the side effects of medicine and high risk of cancer if they have skin involvement. However, lack of sunlight can cause Vitamin D deficiency, which is detectable in blood work. Correct levels of Vitamin D help modulate the immune system. Some people have naturally low levels of Vitamin D with or without sun exposure. If you haven’t had levels checked, you might speak with your doctor. http://cdn.intechopen.com/pdfs-wm/26060.pdf
There is some evidence that patients suffering from peripheral neuropathy may benefit from B-Complex. Anecdotally, many patients report improvement in nerve pain upon prolonged use. The Mayo Clinic lists B deficiency as a possible cause of peripheral neuropathy. http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/basics/causes/con-20019948. More studies need to be done to prove its efficacy. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0012879/
Probiotics have long been understood to play an important role in gut health. https://www.gastro.org/patient-center/diet-medications/probiotics. As such, as people began making a connection between gut health and autoimmune disease, they also started to consider the usefulness of probiotics. Research is still being done, but there is some evidence they can help autoimmune diseases http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0009009. Skin conditions, like rosacea, have shown some improvement with probiotic use. https://www.aad.org/stories-and-news/news-releases/could-probiotics-be-the-next-big-thing-in-acne-and-rosacea-treatments
The subject of great debate, essential oils bring comfort to some and consternation to others. There is little scientific research to support their use, but anecdotally, people have had great successes. However, the medical community has been slow to accept their use. Personally, I have noticed an increase in the quality of my life. I have more relaxed muscles and physical comfort, digestion is supported and improved, alleviated pain, more restful sleep patterns, less occasional stress, as well as being able to enjoy the oils’ beautiful aromas which add to the comfortable ambiance of my house. Some of my favorite oils are Lavender, Frankincense, Peppermint, Copaiba, Chamomile, Rose and Orange. Here are a couple of studies that show some positive effects of essential oils.http://www.ncbi.nlm.nih.gov/pubmed/22517298. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032645/
Other Healing Techniques
Next time we will begin discussing alternative healing methods such as massage therapy, Acupuncture, Reiki, Tapping, yoga, guided meditation, CoQ10, Creatine, Tai Chi and Qi Gong.
Please remember that this article is not to be considered medical advice, and personal stories do not mean that you will experience similar results. The Food and Drug Administration (FDA) has not evaluated or approved these statements, please do your own research and consult with your doctor before starting any new regimen. These products are not intended to diagnose, treat, cure, or prevent any disease. You can contact Emily Filmore for questions about any of the remedies discussed here.
What alternative options have you tried? Did you experience success? Share your story at http://www.understandingmyositis.org/share/.
Originally printed on Myositis Support and Understanding here (2015). All Rights Reserved.