Fibro Friends

Personal Update

Dear Fibro Friends,

Over the past year and a half I have continued my search for effective therapies to help persons with chronic fatigue and fibromyalgia syndromes. You can trace this search by reading my blog posts on specific therapies and subjects, however I feel that now is a good time to write a summary of my recent health "adventures".

I spent the majority of last year exploring various forms of energy medicine that employ electricity to stimulate healing. The science behind these therapies is based on the principle that all living beings are primarily energetic and governed by electrical impulses. Specific frequencies and amplitudes of electricity have been found to promote healing at the cellular level and provide the catalyst for restoring balance in damaged molecular systems of the body. The field of modern energy medicine, which includes low level laser, microcurrent, pulsed electromagnetic field, and static electric field therapies is developing rapidly and provides effective nonpharmalogical treatments for many chronic conditions.

After reaching a plateau in my improvements with LENS (Low Energy Neurofeedback System) I started using NeuroField, a pulsed electromagnetic field therapy developed by Dr. Nicholas Dogris, which is used in conjunction with LENS treatments. This therapy involved commuting once a week for five months to Orinda, California to work with a wonderful therapist named Dr. Candia Smith. I made progress in my sense of well being, emotional stability and energy, however these combined treatments failed to improve my sleep or muscle condition. For more information on this and on energy medicine in general read my post "Energy Medicine of the Future". http://fibrofriends.typepad.com/fibro_friends/2011/03/energy-medicine-of-the-future.html 

In the spring of 2011 I was contacted  by Justin Brost who manufactures a static electrical field technology called the Energetic Fitness System. The unique aspect about this form of energy medicine is that rather than employing specific digital frequencies determined by a therapist to treat different conditions, the energy field creates analog harmonic frequency patterns that are rapidly changing and different for each person, theoretically providing the frequencies each person needs to heal and balance their body. Brost's business is located in Bellingham, Washington about and hour and a half drive north of Seattle. I traveled to Bellingham, Washington ten times to try this technology out and then purchased my own unit. Although I initially had a very good response to EFS over time I became reactive to it and it was no longer therapeutic. For more information on this read my post "The Energetic Fitness System" http://fibrofriends.typepad.com/fibro_friends/2011/07/energetic-fitness-system.html 

Then during the summer of 2011 I traveled twice to Portland, Oregon to try Frequency Specific Microcurrent with its developer Dr. Carolyn McMaken. McMaken uses specific frequencies that treat people with fibromaylgia caused by cervical spinal trauma. She insisted that I did not have any kind of fibromyalgia since my muscle pain is triggered almost entirely by physical exertion. McMaken treated me for a number of other conditions including concussion, liver toxicity, parasympathetic nervous system toxicity, and DOMS (Delayed Onset Muscle Soreness). Although I initially had a good response to FSM the effects were not long lasting. McMaken referred me to a neurogist in Durango, Colorado named Dr. Catherine Willner who uses FSM in her practice. Willner tried some additional FSM frequencies on me that were not helpful. For more on this read my post "Frequency Specific Microcurrent" http://fibrofriends.typepad.com/fibro_friends/2012/01/freq.html.

Although none of the forms of energy medicine that I explored resolved my remaining symptoms, I feel that my overall health is better than before I used them. There are many anecdotal accounts of healing in persons with chronic illness using these technologies and they are all safe so I encourage others to give them a try. My personal opinion is that these therapies are excellent for treating acute inflammation and muscular and skeletal injuries, however they are not as effective in resolving long term systemic conditions such as chronic fatigue and fibromyalgia syndromes.

In October of 2011 I discovered by chance how beneficial female hormone replacement therapy is for my particular situation. After eight years of taking Activella, a combination of a plant based estradial and progestin, I decided to decrease my dose by one half. One week later my muscle condition and sleep became dramatically worse and this persisted for two weeks until I figured out the connection. A week after I went back on my regular dose, my symptoms improved to the point where they were before the decrease in hormone replacement. I spent several months researching the possible connection between female hormone levels and fibromyagia. To read about this and the conclusions I reached read my post "Hormone Replacement Therapy - An Effective Adjunct Therapy forFibromyalgia".  http://fibrofriends.typepad.com/fibro_friends/2012/02/hormone-replacement-therapy-an-effective-adjunct-treatment-for-fibromyalgia-and-chronic-fatigue-synd.html  

At the recommendation of Dr. Willner I went through a series of tests at Swedish Neuro Sciences in Seattle, Washington to assess my muscle condition. About half the doctors I have consulted think that my muscle pain is a form of fibromyalgia while the other half insist that I don't have fibromyalgia. My personal opinion is that I do have fibromyalgia but because of all the improvements in other areas of my health due to the therapies I have pursued, specifically Oral Systemic Balance and LENS neurofeedback, I do not present myself as the typical fibromyalgia patient (no fatigue, brain fog or all body pain). I was willing to undergo this rather lengthy process of testing which involved blood tests, EMG muscle and nerve testing, and MRI and muscle biopsy to see if anything would turn up. Laboratory tests showed no sign of muscle disease however there was evidence of an old injury and nerve reinnervation. To read more about my personal understanding of the muscle dysfunction that I have and which I think is common to many people with FMS read my post: "Fibromyalgia - a Perspective on Muscle Dysfunction and Effective Treatments".  http://fibrofriends.typepad.com/fibro_friends/2011/10/f.html 

Most recently I embarked on a new therapy which appears at least in this early stage to be the missing piece of the puzzle for resolving my remaining health issues. I am working with a scientist who has developed a technology called Human Probiotics which reinstates beneficial human sourced probiotics or "vitamins" that are no longer produced by a person's microflora. The reintroduction of these microbes into a person's gastrointestional tract or gut repairs the immune system and "turns the genes back on" correcting methylation problems and restoring serotonin levels. The therapy involves monthly trips to the Boston area. So far my response has been excellent with consistently better sleep, muscle function and less reactivity to foods. I am optimistic that I am on the last stretch of recovery for which I  am extremely grateful. The therapy is a process and only time will tell how successful it will be for me as well as a few others I know who are also pursuing this. Stay tuned for a future post on this subject. The best way to do this is to subscribe to my blog which you can do by clicking "Subscribe to this blog's feed" which appears at the bottom of the "Categories" column on the left hand side of my blog: http://www.fibrofriends.typepad.com.  

Everyday I think about those suffering with chronic illness and how much courage and faith this takes. The support and friendship I recieve from my "fibro friends" is immeasurable and inspires me to move forward in my search for solutions to difficult health issues. It is my firm belief that chronic fatigue and fibromyagia syndromes are totally reversible conditions and that the treatments to do that have already been discovered, we just have to find them! To that end I continue to dedicate my personal search and this blog.

Sincerely yours, Darden

Hormone Replacement Therapy - An effective adjunct treatment for Fibromyalgia?

Fibromyalgia Syndrome occurs most often in women who are perimenopausal or postmenopausal. This suggests that decreasing female reproductive hormone levels may be involved in the development of fibromaylgia. Hormone replacement therapy or HRT involves the supplementation of the female hormones estrogen and progesterone for the relief of menopausal symptoms including hot flashes and vaginal dryness. There are few studies on the effectiveness of HRT taken by persons with fibromyalgia however many women including myself have experienced an improvement in symptoms when taking female hormones.

Both Chronic Fatigue and Fibromyalgia Syndromes are stress response related disorders that produce abnormalities and disruptions in the endocrine system and specifically to what is referred to as the Hypothalamus-Pituitary-Adrenal (HPA) axis. This results in decreased cortisol production and adrenal exhaustion. For more on this read my post "Adrenal Exhaustion" http://fibrofriends.typepad.com/fibro_friends/2008/10/adrenal-fatigue.html . I suspect that these abnormalities also result in a deficiency of estrogen that is a major contributor to many symptoms associated with fibromyalgia. 

One reason why hormone replacement therapy may help with fibromyalgia symptoms is that magnesium utilization is increased by the presence of estrogen. Magnesium is critical for hundreds of enzymatic reactions in the human body. Adequate amounts of it are necessary for proper ATP synthesis and muscle functioning and a deficiency of magnesium can result in muscle soreness and tension, poor sleep, tension and migraine headaches, anxiety, hyperactivity, and constipation - all symptoms common to fibromyalgia syndrome. Scientific studies also support that estrogens are good for skeletal muscle function and strength and that female hormonal decrease is associated with a greater incidence of muscle injury and a delay in recovering from these injuries. 

There are a variety of female hormonal supplements and methods of applications including pill form, patch, cream and vaginal preparations. Estrogen is usually prescribed along with progesterone unless a woman no longer has a uterus because supplementing with estrogen alone can increase the risk of uterine cancer. Sources of estrogen include conjugated equine estrogens obtained from pregnant mares' urine, synthetic estradiol, or plant based estradiol obtained from soy or yams. Sources for progesterone include some type of synthetic progesterone or progestin, or micronized progestrone from plant sources. Standard HRT contains various combinations of these hormones.

Bioidentical hormone replacement therapy (BHRT) is a term referring to the use of un-patentable plant derived hormones that have the same molecular structure as the hormones in the human body. Supplements often contains the three forms of estrogen that naturally occur in the body - estriol, estrone and estradiol plus micronized or "natural" progesterone. They are typically prescribed by naturopathic and "alternative" physicians who use saliva tests to measure hormone levels and then customize formulas prepared by a compounding pharmacy for individual patients. Hormones are often prepared in transdermal creams that are applied to the skin and labia thus go directly into the bloodstream and bypassing the liver. BHRT is considered by some to be a safer alternative to standard HRT however there have been no clinical trials comparing the effectiveness or relative safety of bioidentical versus nonbioidentical compounds. 

In 2002 the use of HRT declined after a study initiated by The Women's Health Initiative was discontinued because researchers found that women taking HRT in the form of Premarin (conjugated equine strogen plus progestin) had a greater incidence of coronary heart disease, breast cancer, stroke, and pulmonary embolism along with a decreased risk of colorectol cancer and fewer fractures. The study which began in 1991 was part of a 15-year project sponsored by the National Institutes of Health on health issues for older women. Later data suggested that the risk of menopause hormones was considerably less for younger women and that certain women who used only estrogen had a reduced risk for breast cancer and heart attacks. As a result of the study long term use of HRT is no longer recommended for post menopausal women and HRT is typically only prescribed for short term relief of menopausal symptoms at low doses. 

During the ten years leading up to menopause when I had chronic fatigue I suffered from severe night sweats. Several alternative health practitioners prescribed "natural" or bioidentical progesterone for me but this only intensified my symptoms. At the onset of menopause my health deteriorated dramatically and I started having fibromyalgia like symptoms in my muscles. Working with a naturopathic physician and results from a saliva female hormone test I tried Biodentical Hormone Replacement Therapies but this failed to relieve my menopausal symptoms and increased my night sweats. I was recommended a form of HRT by my nurse practitioner called Activella, which is a combination of 1 mg. plant based estrodial and .5 mg. progestin. I tolerated this formula quite well with no adverse effects and my hot flashes and vaginal dryness went away within a week. 

When I began taking Activella my health condition was at an all time low. I was happy to not have to deal with menopausal symptoms on top of everything else and I did not notice any improvement in any other symptoms. Several years later I began to make breakthroughs in my health with therapies that I have discussed in this blog, specifically Oral Systemic Balance, Wilson's Syndrome protocol, and LENS neurofeedback. After eight years of taking Activella I thought that it might be a good idea to decrease my HRT since I was well past the menopausal period for which HRT is currently recommended. My naturopathic physician was concerned by the results of a saliva hormonal test that showed very elevated levels of estradial. At the recommendation of my nurse practitioner I started to skip taking Activella one day a week. During that time I had flares in my fibromyalgia around once a week but I did not suspect this had anything to do with skipping one day of my HRT. Then I decreased my dose in half, taking a half tablet of Activella each day. I did not experience a return of hot flashes which I interpreted as a good sign however after a week I experienced a flare in my fibromyalgia that lasted not just for a few days but continued for two weeks and was the worst setback in muscle pain and disturbed sleep with heat at night in many years. After two disabling weeks I suspected that the decrease in HRT might have something to do with my relapse. I went back on my regular dose of Activella and a week later my intense symptoms went away. 

The experience of decreasing the amount of HRT I take made me realize how important female hormones are to my health situation. As an experiment I tried increasing the Activella by one-half each day to see if this could provide any further benefits but I experienced symptoms of taking too much estrogen - sore breasts. I also experimented with taking additional progesterone both synthetic progestin which was not helpful and bioidentical progesterone which once again produced heat at night. Curious about the efficacy of various laboratory tests I did blood tests for estradiol and progesterone which were low when I was on the half dose of Activella. I also did a 24 hour urine hormone profile considered by some to be the gold standard of hormone testing which measured extremely high levels of estrogens, which is normal for persons taking oral estrogen. The laboratory also measured other forms of estrogens, which according to the laboratory physician did not indicate a potential risk for cancer. 

I have come to the conclusion for myself that taking HRT in the form of Activella is very helpful for my health. Since my "experiment" I have stayed regular with my dose and my fibromyalgia symptoms are better. Unfortunately because of the current reluctance in the medical community to prescribe HRT because of risk factors found in the Women's Health Initiative, many women with chronic fatigue and fibromyalgia may be discouraged to try a therapy that may benefit their condition. I personally think that the testing of hormones using saliva, blood or urine should not be the determining factor in deciding the correct dose of hormones, rather HRT should be adjusted to the symptoms of the patient. In regards to large studies, it is important to remember that all postmenopausal women like all people are medically not the same. Individual women will respond differently to various forms of HRT and need to find out for themselves which type is beneficial for their health. I have many friends who continue to take HRT well into their 60's and 70's and would not consider stopping because of how it contributes to their quality of life. I suspect that for many women with fibromyalgia and chronic fatigue syndrome this is also true.