ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
A Fibromyalgia Patient's Ten Strategies For Healing
Wednesday 7 January 2015
A Fibromyalgia Patient’s Ten Strategies for Healing
(Darden has been working on her fibromyalgia/ME/CFS for years and has made substantial progress. In this post she outlines what’s helped.
Dr. [Jacob] Teitelbaum recently asserted that his patients receive the most help from alternative medical practices. It’s interesting, in that vein, that all the things that have significantly benefited Darden come from the alternative medical field, few are paid for by insurance companies, and several involve adjustments we can all make.
At the end we present a poll asking what your experiences with Darden’s suggestions are. Please note that fibromyalgia and chronic fatigue syndrome are complex disorders that usually benefit from multidimensional approaches to treatment; i.e. single treatments will probably most like score at their best in the moderately beneficial levels – it’s the combination of treatments that’s the key.
Please note as well that Darden is a patient not a doctor who is relaying her experience. Check with your doctor before making changes to your treatment protocols)
I am weary of reading about studies on the cause of fibromyalgia pain. Theories about altered pain perception, disordered sleep and immune dysregulation, etc might be interesting to a medical scientist but they are not particularly helpful for a person suffering from fibromyalgia.
What is needed is a list of strategies that are helpful for patients keeping in mind that each person is unique and what might help one person may not help another. There are no absolutes when it comes to health and this is particular true of complex conditions such as fibromyalgia and chronic fatigue syndrome.
My suggestions are based on my personal experience of living with fibromyalgia pain for twelve years and ultimately finding treatments that resulted in significant reversal of my symptoms, communicating with others from my blog “Fibro Friends” for the past seven years, and sharing information with other patients I met at a fibromyalgia clinic where I spent three months.
1. Rest & Pacing
Most fibromyalgia patients report improvement from symptoms from resting and not “over doing” it physically. This is easier said than done because the threshold of activities that one can “get away with” varies from day to day and set backs occur after the fact. Nonetheless learning to pace one’s activities and adhering to a schedule of activity interspersed with rest is a good strategy. I personally adhere to a strict bedtime and meal schedule and take a short nap every afternoon after lunch.
2. Avoid Drugs
Impaired detoxification is common in persons with fibromyalgia and avoidance of stimulants, depressants, pharmaceutical drugs and toxic chemicals can make a big difference in feeling better. This includes alcohol, caffeine, sugar, pain relievers and additives in processed food. Unfortunately many physicians prescribe drugs for pain, depression and sleep, which become less effective with time and in the long run make a patient worse. Particularly dangerous are the drugs Lyrica and Neurotin, which cause cognitive impairments and have severe withdrawal symptoms.
3. Treat Small Intestine Bacterial Overgrowth (SIBO)
Many Persons with fibromyalgia have gastrointestinal issues or Irritable Bowel Syndrome caused by an overgrowth of bacteria in the small intestine. SIBO creates a condition of toxemia that overwhelms the liver’s detoxification capacity and leads to nutritional deficiencies and is a major cause of fibromyalgia pain. It is diagnosed with a breath test that measures hydrogen and methane gas and is treated with specific antibiotics, diet and prokenetic drugs to stimulate gut motility. For more information on this disorder click here and read my post.
4. Gentle Physical Therapies
Traditional deep tissue massage is often too strong for fibromyalgia patients but more gentle forms of physical therapy can be helpful. I recommend BowenWork and Feldenkrais training. Both therapies are very gentle and remarkably effective methods of relieving pain and improving physical function. Bowen Work stimulates healing through subtle moves that release tension in specific areas of the body and Feldenkrais addresses patterns of movement and posture that can cause pain. For more information and to locate a practitioner go to: email@example.com and www.feldenkrais.com.
Warm showers finishing or alternating with brief cold showers can take the edge of fibromyalgia muscle pain and help with circulation. When I was sick with fibro I took 4-5 showers a day and when I had a bad night I would get up in the middle of the night and take an additional shower. It was especially helpful for me take a shower before bedtime, a practice I still maintain. Whole body cryotherapy in a cryosauna is also very effective at relieving symptoms. I do not recommend hot baths and saunas as they can aggravate symptoms.
6. Chiropractic Adjustments
Many fibromyalgia patients benefit from regular chiropractic adjustments that provide some relief from muscle and nerve pain.
7. Low Histamine Diet
Studies show that many people with fibromyalgia have problems with mast cell activation and are particularly sensitive to histamine. Avoiding foods with high levels of histamine can make a big difference and prevent fibro flares as well as migraine headaches. These foods include alcohol, black tea, fermented foods, cured and aged meats and cheeses, tomatoes, pineapples and citrus fruit.
The supplement industry is rife with claims of various supplements for Fibromyalgia Syndrome. There are only three supplements that I know of that are truly beneficial for fibromaylgia patients. They are magnesium, which helps with constipation and tense muscles, malic acid found in apple cider vinegar, which can help reduce small intestinal bacterial overgrowth, and ginger root, which helps digestion and is also a potent antihistamine that can help sleep.
Lying on the ground outside or on a basement floor that lies directly above the ground can help with severe episodes of pain or “fibro flares”. The contact with the electromagnetic force emanating from the ground has a calming effect. I do not recommend “Earthing” pads or products, which claim to have the same effect but can become agitating if used long term.
Exercise is a tricky and sometimes impossible activity for persons with fibromyalgia depending on the severity of the condition. Overdoing it can result in a flare-up of symptoms and compound pain and exhaustion so one needs to try to stay withing one’s threshold of tolerance. Stretching is particularly bad for the adhersions that build up in the connective tissues in fibromyalgia however mild exercise and movement such as walking, Tai Chi or QiGong well within the limits of one’s capacity for exertion can be beneficial. Wearing compresion garments while exercising may be helpful. I also highly recommend The Miracle Ball Method, a program of “unexercises” developed by Elaine Petrone to heal chronic pain. www.elainepetrone.com
10. Oral Systemic Balance
Many persons with fibromyalgia have TMJ symptoms and breathing difficulties. Specially designed oral appliances fabricated and adjusted by dentists can improve breathing, restore balance to the nervous system, improve posture and relieve TMJ and body pain. The therapy is very expensive and time consuming however I believe that it addresses a key source of stress for those suffering from both Chronic Fatigue and Fibromyalgia Syndromes. For more information go here and read my post.
The above, with a questionnaire and many comments, originally appeared here.
blog comments powered by Disqus