Fibro Friends

Be kind for everyone you meet is carrying a great burden. - Philo

Courage

Courage doesn't always roar.

Sometimes courage is the quiet voice at the end of the day singing

"I will try again tomorrow".  -  Mary Anne Radamacher 

HOPE

I occasionally receive negative comments on my blog from persons with CFS and FMS. This happens most often when I attempt to connect with others in on line support groups. I understand that this is part of presenting material on the Internet but nevertheless it is disturbing. The fact is there are many people with CFS and FMS that are resistant to hearing about avenues of healing that they are not familiar with and suspicious about stories of recovery. Some cannot understand the complexities of the topics I write about and want a simple explanation for their condition. Some have even questioned my motives for writing about the treatments that have helped me and the validity of my experience. This is sad indeed yet I try to not take it personally. I know that these responses stem from fear and suffering that is part of the CFS and FMS experience.

Persons with Chronic Fatigue and Fibromyalgia are victims of a medical system that does not understand and does not know how to treat their disorders. Most have spent an inordinate amount of time and money seeking medical help with no positive outcomes. They have been beat up by doctors who invalidated their symptoms, dismissing them as psychosomatic, and they've been strung along by others who bombarded them with drugs or claimed they could help but didn't. They've tried so many things that did not work that they have given up hope of ever living some kind of normal life.  

The most difficult thing about my personal health search was dealing with the disappointment of failed treatments. For the 5 or 6 therapies that made a significant contribution towards my recovery there were 50 or 60 that didn't help at all. To get an idea of just a few of the therapies that I tried unsuccessfully read my post "What Didn't Work" fibrofriends.typepad.com/fibro_friends/2009/07/what-didnt-work.html. Every time I started a new treatment or therapy I was hopeful that it would help. When I got to the point where I knew this was not the case I was devastated but I did not give up trying. In retrospect I realize that I learned something from each of these experiences which ultimately helped me solve the puzzle of my health condition. 

One of the most pivotal experiences of my health search was spending three months at the Fibromyalgia Relief Center in South Lake Tahoe, California in 2007. This was the first time I had the opportunity to talk with others who had similar health problems. This group of people was so determined to get better that they were willing to travel long distances, to be away from their homes and families for weeks at a time and to invest a considerable amount of money. I was impressed by their optimism, their faith and their courage. In almost every case I heard the same story. They wanted to get well to give back to others and to fully participate in the lives of their children and grandchildren. Although many of us experienced improvements from the treatments at Tahoe, for the majority the relief was short term. Over the months after my stay I heard from one person after another whose health relapsed. Some were so devastated by this and set back by the financial losses that they gave up trying additional therapies. Meanwhile I had made the first significant breakthrough in my recovery with Oral Systemic Balance. My motivation to start my blog was twofold: First to expose the truth about the "Whitcomb method" through first hand reports from patients who were at Tahoe, and second to share information about therapies that were beneficial for myself and others. 

The suffering for persons with chronic fatigue and fibromyalgia syndromes is off the charts and presents a spiritual challenge. How can one feel at peace when one is thoroughly exhausted, cannot sleep and is in chronic pain? How can one feel safe in a body that is dysfunctional at every level? How can one endure this state day in and day out, year in and year out with no relief in sight? How does one maintain the will to live in these circumstances? The answer is simple: by faith, hope and love. This may be easy to say but try living it. My illness required every scrap of courage, patience and intelligence I could muster and a lot of support from family and friends. There were long periods where I wondered if I could make it through the next hour, let alone the next day. It was at these times that I reached out for emotional support often spending an hour every day on the phone with my best friend who sent me a charm with "H O P E" inscribed on it, which I put on my key chain. Her support and that of so many others was unflinching. Their message was clear: "Don't give up!". 

Some say that it is a miracle that my health has improved so much. I say the miracle is that my spirit endured through years and years of unbelievable physical hardship. I got better because of my perseverance, my financial capacity to explore every lead, and ultimately because of revolutionary medical treatments that reversed my condition. We are living in an exciting time where breakthroughs are being made in the treatment of chronic health conditions. It may be years before the mainstream or "alternative" medical communities embrace these but people suffering today don't have time to wait. As I approach the finish line of my recovery I am not giving up on others out there. I want to shout from the top of the mountains: "Don't give up! You can get better! There is hope!"

 

Blog Responses

I have received some positive feedback on my blog.  I thought it would be nice to share some of these comments in a separate blog post. I will add additional ones as I receive them. I appreciate the support for my efforts on the blog and the valuable information and feedback I receive from others. My Fibro Friends are my best allies in the quest for better health. We truly benefit from our shared experiences and support.

 

Darden,  I would first like to credit you on your phenomenal job with all of your blog posts. You are a great writer with the insight and personal experience to really make a difference. Every one who views your articles should feel truly blessed that you have taken your hard earned knowledge and have provided it here for all of us to learn and benefit from. Through my own experiences with naturopathic medicine I have found much of what you've written to be consistent and very much on point. I've been to local Adrenal and Thyroid specialist, traditional ND's, non traditional ND's, Fibro and Fatigue Centers, and various others who take the alternative or naturopathic approach. I would first like to state that the naturopathic approach should be implemented as a standard of first measure in preventative medicine, versus the "alternative" title for which it is most famous. People often seek this naturopathic approach once the allopathic field has failed them. I however believe that people with FMS or CFS have gone under the radar for so long that it is virtually impossible to revive them through ND medicine alone. We enter into a phase in which we are still chasing "symptom trails", rather than the actual causes. For some people if you actually correct the symptom through ND medicine instead of masking it through drugs, they do get well. Although it can be helpful to address various imbalances in the body I have found for me that it is not the end of the road. I have learned a wealth of information through undergoing naturopathic therapies and have found that one of the keys to successful treatment is self education and being proactive in ones own personal health regime. This approach teaches empowerment and personal attestation to the complexities of ones own health state. It teaches that the patient is essentially the best Doctor while owning the power in knowledge of self. This area of medicine actually encourages personal exploration as opposed to handing ones life over to a total stranger and leaving it up to them. Naturopathic approach promotes body awareness and the essential foundations of keeping ourselves in good health. I can say that although the array of methods that were available to me weren't successful in treating FMS and CFS, I became an informed and educated person in which have provided me with the skills to take charge of my health in so many different areas. I have learned to extract lessons out of each experience and be grateful for that. There are two key statements that stood out to me in your post. "If nothing else pursuing these therapies gave me hope. Not trying something was for me equivalent to giving up." And, The naturopathic folks and the mavericks on the the edge of medicine had the most chance of helping because they paid attention to the clues." Anybody reading this post will most likely experience this with their ND. It is extremely helpful to have an advocate that can present a totally different health model in which for many will be life altering. Naturopathic Doctors are good at providing insight into various conditions that you would never have gotten with an allopathic physician. They are extremely helpful in working with you to teach and educate important lifestyle modifications and health advice. While I have not found my experiences with them to be a cure, it has be an enlightening and helpful journey. I have found the greatest improvement with FMS and CFS was in undergoing OSB (Oral Systemic Balance) and LENS (Low Energy Neurofeedback System). Since experiencing these therapies I have gained a new found quality of life that would have never dreamed possible before. I continue to see improved results with each waking day and would encourage any body reading this post to seriously consider looking into these break through therapies. Darden, I would encourage you to remain sound in your advancements by continuing to produce this invaluable information to people who truly need it. Every time I view your articles I take myself back to a time before meeting you. Each time I smile in thinking that had this information been hand written from an experienced person years ago for me to read I would not only have a new friend in walking this journey but a clarified perspective and a solid path to hope. I think of all the people whom are not only suffering with the conditions of CFS & FMS, but the added confusion and battle for clean information that they are neglected of. It is a discouraging and complicated terrain to navigate alone. It is not an easy task in being forced to question against the very Doctors, friends and family members that they have once entrusted their lives with. This blog is not for everybody. It is for those who are seekers and believers. It is for those whom are not willing to accept a defeated fate in which they have been told. You are making a difference! I am forever grateful for that =). -  Tim Luker

Thank you for all the time and effort you have put into your blog...your knowledge has helped so many of us!  - Robin Frost Storms

I will continue reading your blog and referring my fibro friends to it. It is such a conscise and thorough overview of the whole subject of the search for solutions for fibro - you really capture the total experience in a very readable form.  - Wendy Bellinger 

Brave, persistent, well-researched and tried with full commitment! I salute you, Darden! Thank you for all your life's work! - Wendy Bellinger in response to "Biofeedback Therapies" post. 

Your blog post "Hope" is beautiful!  The themes of honesty, tenacity and integlligence that are such a part of you are woven into this piece you've written.  Without your unrelenting belief that somehow, somewhere, somebody could help you get better, I worry your life woud've been completely overtaken by pain & despair (as it is for so many who suffer without the hope of recovery).  You are a pioneer, marking the way ahead with courage and experience that show that you can really recover and lead a satisfying, meaningful life.  Hope & love are what drive the machinery of tenacity and courage.  Without support and some undying sense that there's got to be something out there that could make it better, there's no reason to keep going.  This is the message that everyone must hear in order to gird their loins and prepare for the long, arduous journey of putting one foot in front of the other to reach the top of the mountain.  I am very proud of you and happy to play a supportive role in this amazing journey you are on.  May this blog find it's way into the hearts and minds of others who are suffering so that their lives (and the lives of all those who love them) may be spared the intolerable suffering that you've been through.       Aimee Rhodes, LMHC, LENS practitioner

I have kept your article on the desktop of my computer. The day I feel depressed and lost, it is when I make it a point to open your article. This surely encourages me in a positive manner to do well and reminds me that I am not the only one facing the problem, there are many others like me. Thank you a ton for writing such a wonderful piece of information.

 

Dear Darden,

I am currently recovering from Fibromyalgia. As you know, it is somewhat uncommon for men to reveal their suffering from what is generally considered a woman's disease. Unfortunately for those numerous men who refuse to come out of their shells, they will never heal  but die a dreadful death. Not me. I suspect that there are as many men and women who suffer from this illness but seldom have it discovered until it is so far gone that other illnesses become their undoing. Again, not me.

I started researching the subject after being diagnosed in 1994 when I was condemned by a rheumatologist to a lifetime of suffering from what had become intractable pain. I was forced to retire on a paltry disability pension in 1999. In the last 3 years before starting to heal, I could barely dress myself since even my skin was hurting so much one could barely touch me. Just the gentle rubbing of cloth on skin was painful beyond belief.

As a computer "geek" I began to search for relief from natural products. I must have gone through thousands of dollars of products promising relief from the arthritic pain in my joints, which was the worst of them all. Finally, in March 2009, I took one product called Vital-3 that clicked with me. It is described as a: "patented liquid formulation of Biologically Active Peptide Fragments of Collagen Type II-n-1 (the principal structural protein in cartilage and ligaments), Vital 3 Joint Solution travels directly to the source of discomfort to work with your body’s natural systems for joint building and defense."

Well, that did it for me. My uneducated and highly speculative theory is that the body's collagen is being destroyed faster than it can be repaired, and, of course, the Central Nervous System sends pain signals from this malfunction to the brain. Hence, pain is felt everywhere...

I learned that nutrition would also help and I had accumulated a number of books on food and healing. So I stopped eating processed foods, especially store bought cookies and pastries, beverages and canned goods. I stopped eating tubfuls of ice cream every week, multiple chocolate bars every day, drinking soft drinks at the rate of 3 or 4 every day. I had already started drinking distilled water in 2003, but this had only a minor impact because of my poor nutrition. I had all of my mercury amalgams taken out by a sympathetic dentist in 2002, I think, having found out that I could be mercury poisoned. It helped a bit.

In March 2009 I weighed 230 pounds, wearing a size 44 pants, at 62 years of age, a far cry from my 135 pounds, 29 pant size at age 35. I had shrunk from a height of 5 ft 11 1/2 inches to 5 ft 8 inches. I was then taking 500 mg of morphine, 3 other pain management prescription drugs, and over a dozen other drugs for an increasing number of opportunistic illnesses. Even with all of those pain killers, I was still in crisis pain all of the time. It was a non stop flare up with no respite. After taking the Vital-3 potion for one week, the pain began to dramatically subside. I told my doctor I wanted off of all the medications. So I started with the morphine. By August 2010, I was nearly drug free, only taking testosterone and thyroid pills (Andriol and Synthroid).

By January 2010, my weight had reduced to 205 pounds. By the beginning of April 2010 I was down to 197 pounds and began a 6 week exercise program under a personal trainer. He taught me everything I needed to know to keep going. I now weigh 174 pounds (end of April 2011) and am in better physical shape than even at my best when I was at University. I have gained somewhere between 25 to 30 pounds of muscle but still struggle with some occasional debilitating pain that I do not mention to anyone. I exercise vigourously 3 times a week to get the full benefit from Human Growth Hormone release into my blood. My doctor now only sees me every 3 months instead of every two weeks and still thinks I will relapse. My only response is "Over my dead body."

The city I live in, Ottawa, Ontario, Canada, fluoridates its water. I have learned of the impact of fluoride substances on human health and have tried to eliminate the ingestion of every source of fluoride substances I can find. I have started a group, working with the FAN to fight fluoridation in my City. In the last year, I have started cooking all of my food only in distilled water, lightly steaming my vegetables according to their ability to remain "crunchy" with each vegetable's minimum amount of steaming. I eat plenty fresh fruits (cleaning them of pesticides before eating their skin, or pealing them if necessary) and vegetables daily, 2 or 3 lean beef meals a week, some poultry, wild fresh water fish, cold water salmon, and a little bit of corn pasta.

I take truckloads of Vitamin D-3 in the winter time, halving it in the summer time, Omega-3 oils, Astaxanthin and other beneficial vitamins and supplements that continue to work for me. That's my success story up til now, but it;'s not over yet. I have a long way to go until I am healed. Fibromyalgia took a long time to nearly kill me, and it will certainly not be fully healed in such a short time, if only because of the residual fluoride left in my bones and elsewhere. However, I am determined to heal fully of die trying. I believe that i will succeed. It takes tremendous will power, but that's how I was able to get this far.

I have attached two pictures of me so you can see the before and after of my ordeal. The big me is the 230 pound sick me, the smaller me is the new healing me.

Continue on your path as I will on mine and we shall be healed by God's grace and mercy. May God bless you for your work in helping other Fibromyalgia victims.

Richard Hudon, Ottawa, Ontario, Canada

Myths and Misconceptions - The Mind Body Connection

As a person living for years with a chronic undiagnosed health disorder I encountered many myths and misconceptions about health and illness. The first is the view shared by the majority of mainstream physicians that if the diagnosis of a particular health condition cannot be determined by medical tests and evaluation then the cause must be psychosomatic in other words originating from mental or emotional factors. I think nearly every person with Chronic Fatigue and Fibromyalgia Syndromes has experienced a physician who made this assessment about them. The patient presents a diverse set of symptoms and complaints including things like fatigue, insomnia, headaches, muscle pain and cognitive problems for which there is no definitive diagnosis so he or she is either a hypochondriac or suffering from stress. This happened to me in 1973 when at the age of nineteen I became debilitated with fatigue and headaches. After extensive medical tests failed to find the cause my doctors reached the conclusion that my symptoms were due to the stress of being a college student. Although I was sure this was not the case it was a traumatic experience for me to continually assert my position. For some reason it is difficult for doctors to admit the limitations of their knowledge and profession. Instead of simply stating that they do not know what is wrong with a patient or that they cannot help them, they conclude or infer that the cause of the patients’ complaints is psychological even though they have no evidence that this it the case. This is a default opinion that shifts the blame onto the patients and is extremely invalidating.

Another major misconception about health is the view that a patient’s attitude can affect the physical outcome of a treatment. I have pursued dozens of therapies and treatments in my quest for resolving my health problems the majority of which were not effective. (See my post “What Didn’t Work” http://fibrofriends.typepad.com/fibro_friends/2009/07/what-didnt-work.html ). I approached each treatment with optimism and hope. The breakthrough treatments that worked for me (Wilson’s Syndrome protocol, Oral Systemic Balance and LENS neurofeedback) did so because they specifically addressed the cause of my health problems. Their success was based on the efficacy of the treatment and the skill of the practitioner facilitating that treatment, not my attitude.

The “placebo effect” is another area of medicine surrounded in myths and misconceptions. A placebo is a substance (sometimes referred to as a sugar or dummy pill) or procedure that is objectively without specific activity for the condition treated. When given to a patient who is told it will improve his or her condition and the patient’s condition improves the response is attributed to the patient’s belief or expectations of getting better. Skeptics and many mainstream health professionals attribute the results of alternative medicine including acupuncture and chiropractic to the placebo effect. Since the underlying mechanisms for which many alternative health treatments work are not fully understood it is easy to dismiss their validity with this argument. 

The placebo effect began in 1955 after an anesthesiologist named Henry Beecher wrote a paper called “The Powerful Placebo” that tried to explain the fact that in his clinical trials some patients got well when given a dummy pill or sham treatment. Beecher’s methodology would not be accepted today but since that time there have been plenty of studies that corroborate his theory. The placebo effect however remains controversial and was challenged in a systematic review of clinical trials in 2001 by two Danish researchers who showed no evidence that it exists.  Other factors that could explain a patient’s improvement from a placebo include the body’s innate ability to heal itself and the natural fluctuation of symptoms.  The placebo effect seems to be observed predominately in relieving subjective conditions such as pain, anxiety, depression and sexual dysfunction.

A study published in the March-April 2005 issue of Psychosomatic Medicine found that patients with Chronic Fatigue Syndrome respond at a lower rate to placebos than patients with other diseases. The researchers led by Dr. Hyong Jin Cho a professor of psychiatry at King’s College London found the results disappointing and unexpected because they suspected that the symptoms of chronic fatigue syndrome were at least partly attributable to psychosomatic causes. Whatever one thinks about the placebo effect, this study helps dispel a common myth about the disease’s origin.

Another myth that continues to be perpetuated about Chronic Fatigue Syndrome and Fibromyalgia is that these conditions are most common in "type A" high achieving, driven persons. The truth is that CFS and FMS sometimes referred to as "invisible illnesses" occur across all segments of the population and all personality types. However it takes a person with very high self esteem and integrity to continually assert themselves in an environment where medical professionals dismiss their symptoms or label them psychosomatic. So although it may appear that CFS and FMS are more common in high achieving persons, this observation is skewed by the fact that these individuals are the most likely to persist in their assertion that they are indeed ill and have a greater ability to bring their conditions to the attention of the medical establishment and the public at large. 

The idea that a person’s mind or attitude can cure or affect the outcome of a disease is not in my opinion or experience true. Anyone suffering from a serious illness such as diabetes, cancer, AIDS or chronic fatigue syndrome understands first hand the flawed logic and naiveté of this point of view. This is not to say that stress management and relaxation techniques aren’t effective tools in coping with chronic illness. I have benefited greatly from biofeedback skills, meditation and exercise as a means of mediating the stress I was under physically. However these tools did not cure me of my condition. 

It is true that strong emotions trigger physiological responses in the human body both positive and negative. As a musician I have personal experience with both performance anxiety as well as “peak experiences” when the music transcended to a higher level. In both cases I felt that my illness was temporarily suspended or overwhelmed by the physical effects of my emotions. However once the event was over and I returned to my relaxed “normal” state, the symptoms of my illness returned. Hypothetically I can see how a patient who is listened to, comforted and cared for will feel more relaxed which would provide an optimal situation for healing. This however is not true for Chronic Fatigue and Fibromyalgia Syndromes, which are serious systemic diseases that can only improve with treatments that specifically address their causes. 

What is particularly frustrating for CFS/FMS patients is how completely unrelated their moods and mental states can be to their physical state. I experienced countless days when I felt peaceful and optimistic that were followed by nights of hell.  Likewise I experienced stressful times in my personal life that coincided with periods of better health and sleep. For me living with Chronic Fatigue Syndrome was an experience of living mind “over” body. It was discouraging and exhausting dealing with the fluctuating symptoms of fatigue, pain and insomnia yet I made a point of keeping a good attitude. When I felt like I was losing hope I leaned on friends and family. My best strategy of coping was to accomplish positive things even if they were small every day and to continue to look forward. Fortunately I recovered but that was not the result of my positive attitude. It was the result of my tenacity and ability to explore treatments that might improve my health and ultimately stumbling upon those that did.

It is appealing to think that the mind can control symptoms and disease. People want to believe this because it gives them a sense of control and security. But this attitude is a grave disservice to those suffering from serious illness and it hampers the search for their causes as well as finding effective treatments.

P.S. An important book published just recently on this subject is “Bright-Sided, How the Relentless Promotion of Positive Thinking Has Undermined America” by Barbara Ehrenreich.

 

Memories of Tahoe

One year after my extended stay in South Lake Tahoe the memories still permeate my consciousness. Like snapshots in a photo album I flash on scenes: driving down Lake Tahoe Boulevard past Izzy’s Burger Spa, walking through Aspen trees on the trail to Fallen Leaf Lake, sitting on the deck of my house listening to Stellar Blue Jays cackling in the tall Jeffrey pine trees and gazing at the Sierras from the top of Twin Peaks. And then there are the memories of people: sitting in a circle with other patients at the Fibromyalgia Relief Center laughing at the simplest comments, sharing at the deepest levels and feeling unconditional support and acceptance for each of our situations. There are also special memories of playing music with Unity at the Lake’s “One Voice”, blending my voice in harmony with others in a common purpose infused with spirit.

I think of these memories, which were apart from my usual life as a wife, mother, piano teacher, and lonely person struggling with my health. In Tahoe I had an opportunity to make new friendships, explore a beautiful place, and create a life on my own. It was a time of determined optimism about my health and my spirituality reinforced by the support of others on a similar path.

It has taken awhile for me to accept that the health treatment that I pursued in Tahoe was flawed, that the relief from symptoms was temporary not only for myself but for most of the other people I met there. Our soaring optimism and highest hopes evaporated for each of us as our symptoms returned once we went home. I have pursued countless therapies that were dead ends but this one was particularly disappointing because the commitment was greater and the hopes so much grander. In retrospect I feel naïve to have been taken in by Doc Whitcomb and to have not done my research more thoroughly before embarking on such an adventure. And yet I cannot dismiss the experience altogether. The people I met and the place is etched in my memory and is a part of who I am today.

My quest for better health continues now on the most encouraging path yet as I experience recovery through Oral Systemic Balance. It’s a slow, steady process that requires a lot of patience but the quality of my life is definitely improving. I remain cautiously optimistic because there are no guarantees in this life. I am only sure that love survives and when one door closes another opens. The Tahoe door closed slowly with a mixture of sadness and longing like my memories of the sun setting over Mt. Tallac.