Healing from Fibromyalgia: Step 1 - Getting a Diagnosis

What is Fibromyalgia? To those who do not suffer from this curious illness, understanding its symptoms, treatments, and effects on a person's life can be very difficult. Debate within the medical community still persists as to the existence of fibromyalgia as an actual disease or condition. Characterized by widespread pain, unbearable fatigue, cognitive impairment (brain fog), and poor sleep, fibromyalgia is often considered the 'wastebasket' disease of the medical community. Considering that fibromyalgia can not be diagnosed using any form of medical testing (blood test, X Ray, etc) many doctors use the diagnosis of fibromyalgia as a catch-all for an explanation of their patient's symptoms. But to those of us who truly suffer from the debilitating syndrome, actually getting a proper diagnosis is incredibly difficult.

As previously stated, fibromyalgia can not be diagnosed through any sort of medical testing. In fact, the current way to diagnose fibromyalgia is through an arbitrary 'tender point test' along side a patient survey. In order to receive the diagnosis of 'fibromyalgia', a patient must respond to 11 of the 18 tender points in all four quadrants of the body (left/right, top/bottom). These 18 tender points are depicted in the graph below:

 

The tender point test and criteria for diagnosis was created in  1990 by the American College of Rheumatology, and, sadly, is still in use today. * There are many problems in the use of this test as the primary means of diagnosis. First of all, in order to meet the diagnosis of fibromyalgia, a patient must have had persistent wide spread pain symptoms for a minimum of three months. * Meaning, one must suffer and live in agonizing, full - body pain for MONTHS before a doctor will even consider to give a diagnosis of fibromyalgia. Not only must one suffer through months of pain, they must also suffer through months of randomized testing in order to rule out any other possible illness or disease which shares similar symptoms. If anyone has lived with fibromyalgia or chronic widespread pain, they may understand the extent of suffering and hopelessness that one faces while being shuffled from doctor to doctor, going through a wide array of tests, only to continue waiting for any information that may provide an explanation as to why they are in so much pain.

Not only is the tender point test subjective, but is it highly unpredictable depending on the severity of the symptoms and the competence of the doctor. Symptoms of fibromyalgia vary from day to day; therefore, multiple tender points may not register on one day, but be very evident on the next. When I was diagnosed with fibromyalgia in 2010, I was experiencing so much widespread pain that I could not differentiate between the pain I felt in the 'tender points' vs the pain I was feeling through out the rest of my body. To me, everything was painful, and the act of applying pressure to one specific area made no difference to the pain I was already experiencing. 

Since the tender point test is unpredictable and subjective, in 2010 "a group of rheumatologists acting on behalf of the American College of Rheumatology (ACR) published new preliminary criteria on how doctors should diagnose fibromyalgia." * This preliminary criteria includes a patient survey, or 'symptom checklist', that acts as a backup to the tender point test. The symptom checklist is just as subjective as the tender point test. The idea behind the symptom survey, I'm assuming, is to provide further validation to the diagnosis of a patient with fibromyalia. As a person who has completed both tests and lives with fibromyalgia, I (obviously) find both to be extremely faulty and possibly ineffective in providing suffering people with proper medical care. However, until fibromyalgia can be diagnosed through a more effective test, like a blood test, patients suffering from chronic pain are forced to live with a flawed system. 

Unfortunately, in order to begin healing from symptoms of fibromyalgia, one needs a diagnosis. Receiving a diagnosis provides patients with some sense of understanding and allows each person to begin taking steps toward finding treatments. Armed with a diagnosis, any patient with fibromyalgia can now venture to arm themselves with knowledge of their condition and begin to regain a sense of hope for improved health. 

If you or someone you know is experiencing symptoms of fibromyalgia, consider consulting a rheumatologist. Most cases of fibromyalgia are diagnosed under the umbrella of being a rheumatic syndrome, therefore many of the most knowledgeable doctors of fibromyalgia are found in the rheumatology department.

An example of the symptom survey can be found at the link below:
 http://www.surveymonkey.com/s/HXZYTBM

Until Next Time,
Feast From Within



Further information regarding diagnosing fibromyalgia:

1. http://www.fmnetnews.com/fibro-basics/diagnosis
2. http://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia-symptoms/art-20045401?pg=1

What happens when the medical system fails

As I write this blog post I am , yet again, preparing myself to embark on a journey with another doctor. Many of those living with a chronic illness can understand this journey far too well. Moving from doctor to doctor in desperate search for a cure, we are continually faced with the harsh realities of our medical system. I can only write from the perspective of an American who has to deal with the American medical system, but I am sure that many of the hardships I have faced in search of treatments are transferable across nations.

Growing up in America, I viewed doctors as saviors, people who knew all the answers and were able to cure any disease. The only illnesses I ever thought of as 'incurable' were illnesses like cancer and HIV, boy was my world about to be rocked. When I first became ill in 2009, my symptoms looked like those of just a common virus. Typical aches, pains, nausea, fatigue, etc. The usual blood tests were drawn and I was cleared by my primary care doctor for mono or any other 'common' viral illness. Leaving the doctor's office I was sure that with rest and fluids I would be back to normal in a week or two, the truth is much different. As weeks passed, my symptoms persisted and continued to get worse. My glands began to swell up to the size of a golf ball and the fatigue became unbearable. At this time I was still attempting to struggle through my college classes, but I knew something was wrong. Once again I went back to the doctor to get more blood tests, but still the same diagnosis. No mono, no serious viral illness, and I would be better in two weeks. Somehow, even with my glands swollen to the size of golf balls, doctors were turning me away - telling me I was going to be fine, and dismissing any or all of my concerns.

Months went by, my glands didn't go down, and my tonsils were 3x the size of normal. I kept thinking that as long as I rested and got enough fluids I was going to be O.K. I mean, the doctors kept telling me I was fine, that my blood tests were 'normal', so I should get better, right? Not right. Because of my faith in doctors and my false belief that they know best, I kept pushing my body, and struggling to get to classes. But enough became enough, it had been almost 4months with persistent and worsening symptoms, and I felt myself slipping away. I began to become incredibly worried. Something was wrong, and I wasn't getting any better. I couldn't make it to my classes because I was too weak to even get out of bed and I was failing out of college, this is when I decided to withdraw and move back home. I was weak, constantly feverish, swollen all over, and had no appetite. I felt like I was dying. There were some days that I was sure my death was imminent and rushed myself to the ER or to the local Urgent Care, only to be turned away - being told that it was some common viral illness. Was I going crazy?! How could trained, medical doctors turn away a patient who was obviously so very sick?!

After I withdrew from college and moved home to the care of my family, our desecrate search for an answer continued. I saw an ENT and was tested for multiple cancers (lymphoma, leukemia, etc) TWO endocrinologists ( one of which was crazy enough to tell me [whilst I was in a wheelchair] that all I needed to do was masturbate in order to get my hormones regulated!!!) an immunologist, an integrative MD, a rheumatologist at the Cleveland Clinic, and an infectious disease specialist at the Cleveland Clinic. Literally, every. single. doctor I went to told me the same thing, "It's just a virus, you will be fine two weeks or so." WHAT?! Are you kidding me?!! By this point, I had been bedridden for months, losing weight fast, and basically waiting to diet. Nothing and no one would help me. I was so weak that I was visiting doctors in a wheel chair, yet they seemed to think that this mysterious virus I had really wasn't doing me much harm, and that I would be better soon. What a farce.

What I had essentially learned from my experiences in the medical system, is that doctors don't know as much as we think they do. When it comes to treating illness, most doctors will just prescribe antibiotics and hopefully the symptoms magically disappear. Now, there are things that doctors do which are wonderful. Just thinking about leaps we have made in surgical procedures is amazing. But for the most part, the majority of illnesses are misunderstood. Doctors usually just treat symptoms, not causes. Prescriptions are handed out to cover up symptoms, such as high blood pressure, anxiety, pain, etc but the root cause of the illness continues to persist. My experiences in the medical system lead me to believe that 1) doctors usually don't really listen to their patients, and 2) hospitals are businesses, and business like money; therefore, patients aren't treated as people, but as dollar signs.

I was continually turned away, continually dismissed, and continually told that I was 'fine' when I obviously wasn't. The extent of my hopelessness was consuming, and I truly began to believe I was crazy. If highly trained doctors couldn't tell me what was wrong with me, or help me get better, then I was doomed to either die, or be sick forever. I had exhausted all options in the medical system, so I began searching elsewhere.

Que in alternative treatments. Cognitive therapy, acupuncture, nutrition, and chiropractic treatments offered me the ray of hope I was so desperately searching for. First, let me note, I was diagnoses and prescribed Cymbalta by a Psychiatrist in 2010 - which acted as a springboard for health due to my new found ability to manage pain. My prescription to cymbalta and my experience in alternative medicine allowed me to heal myself. The philosophy of alternative and holistic medicine is that the human body is capable of healing itself, or regaining it's healthy equilibrium, when it is cared for properly. The practitioners I began seeing in the alternative medicine world took their time trying to truly understand me. For the first time in over a year I felt people were beginning to take my illness seriously. They were giving me hope for a brighter future, a sense of hope that was lost through my experience with the traditional medical system. And that's what happens when the medical system fails. Patients are forced to look within themselves, to find alternative treatments, and to learn how to understand the needs of their own body.

In the next few days I will be embarking on a journey with a naturopathic doctor, one whom I hope will help to shed even more light on what is going on in my body. I may have lost my faith in the medical system, but I have gained faith in the power of my body to heal itself.

If you are searching for alternative doctors in your area, look into finding a licensed naturopath or integrative medicine practitioner.

Until the next time,
Feast From Within

Re-defining Success with a Chronic Illness

Many days I spend time wondering if I'm working hard enough, if there is more I can be doing, if I need to be more proactive about my health, or if my health will prohibit me from achieving my goals. Before I got sick, I spent my teenage years being active in athletics, community service, and after school group activities. I was the stereotypical overachiever who wanted to be involved in any and every group possible. Back then, success meant being the 'best' and winning awards. My entire self-worth was derived from the success I felt from the outward accomplishments I could achieve. To me, the more recognition I got, the more successful and worthy I felt. But my idea of success was radically changed once I became ill.

It has been five years since I first fell ill in 2009, and I still struggle with my definition of success daily. My old paradigms of material gain and outward recognition still color my perception of how successful I feel. My emotions usually fluctuate between feeling like I'm not working hard enough, to worrying that  I will never amount to anything in my life. Recently I have realized that my current definition of success is detrimental to my personal outlook, and quite frankly it is a result of poor self-worth and self-image. In my definition of success, I'm using all of the outward accomplishments I can achieve as a filler for a lack of inner self-worth and self-love.

Self-worth/self-love is an inherently hard concept to cultivate in any individual, regardless of chronic illness; however, I have found that living with a chronic illness makes self-love even harder. It shines a harsh light on our vulnerabilities, insecurities, and true feelings about ourselves. For example, I have spent my whole life defining my success and self-worth through the eyes of others, and I only felt that I was worthy of love if I could accomplish something and get attention. And, now, living with a chronic illness I am FORCED to redefine success and how I view myself.

Living with fibromyalgia, I can not accomplish as many outward goals as others. I can't compete in physical activities, run a marathon, go back packing through Europe, etc. I have to make sure I get enough sleep, eat the correct diet, take my medication, have time to rest through out the day, and most often I have to depend on others for support. It kills me to think that there are things in this world that I may not ever be able to achieve or places I may never be able to visit, but I am slowly learning that not achieving those things is o.k. In my mind, I'm only worthy if I have traveled the world, been on adventures, made a lot of money, and achieved acclaim in my career. It drives me crazy that I still live near my hometown, that I haven't seen as much of the world as I want to, and that I haven't made an extreme headway in my career. There is something in me that believes if I do not accomplish these Type- A goals, my life will be worth nothing, or that no one will value me, or that I am wasting my life due to my chronic illness. And yes, there are things in life that my chronic illness will not allow me to do - but I'm starting to realize that all of those limiting beliefs t are bullshit.

Think about it, why are we all striving for success and acclaim? In one way or another, most of us are trying to fill a void that wasn't tended to as children. We are trying to fill that hole with material things, cars, jobs, money, etc. just because we don't believe we are incapable of seeing our inherent worthiness. We are trying to cover up our insecurities, because somewhere, deep down, most of us don't believe we are worthy of love unless we are able to accomplish something. Each day is a struggle for me to understand that I am worthy, not because I accomplish something, but I am worthy merely for just being me.

Sometimes I get lost in this world. It is hard living with a chronic illness. Each day is frustrating and painful and the fear that I am missing out on life can be incredibly heartbreaking. I believe that each person deserves to experience the full potential of their lives, and quite often, living with a chronic illness can make someone feel like their life has been taken away from them. But, on those days when my self-doubt is at its worst, I just have to stop and remember what I have and what I am capable of doing. I may not be able to do everything that everyone else can do, but I can still do a lot. I have come a long way from being bedridden. I'm fortunate enough that I have gotten a hold on my chronic illness, to the extent that I can work, I have traveled abroad once, and I am able to walk and enjoy life again.

Each day it is important to remember that we define our own success. Success is different for everyone, and it is never a replacement for self-worth. Being mindful of how we view ourselves, how we view success, and what we say to ourselves in our own heads can be incredibly enlightening if we just take the time to slow down and be mindful of our thoughts. Don't even compare your life journey to that of another. Each of us is inherently worthy to be alive and to be loved just by being us. We all have our own paths and our own parts to play in life, and the journey can take some amazing turns. Five years ago I thought I was going to die and that I was never going to be healthy again, but now I am grateful to say that I live a very blessed life with many opportunities to accomplish some of my goals - and so can you.

While this blog post might seem like I have rambled on about success, self-love, and self-worth, all I want you to take away from this is that our idea of material gain as success is usually bullshit. That we ARE worthy of being loved even though we are sick, and that there is always the possibility of things getting better. Never give up, and never let anyone define your success but you.

Until Next Time,
Feast From Within
xoxo

Book Review: The Anti-Inflammation Diet and Recipe Book

On my quest for the perfect diet that will optimize my body's ability to heal, I have come across many books that promise such results. Of course, most fall short in conveying adequate information about how the body functions with regards to nutrition, and many others are just jam packed with difficult recipes which seem better suited for a chef (which I am not). However, I was pleasantly surprised by what I found in the Anti-Inflammation Diet and Recipe Book. 

Written by Jessica K. Black N.D, trained at the National College of Naturopathic Medicine in Portland, Oregon, the book does approached inflammation through a holistic and nutritional approach. Increased inflammation in the body results in many chronic health conditions such as heart disease, chronic pain syndromes, and diabetes. And, according to the book, "seven of every ten Americans who die each year, die of a chronic disease." (pg. 39) Therefore, in my journey to optimal health and wellness, I decided to embark on learning more about this Anti-Inflammation Diet 'revolution'. 

The Anti-Inflammation diet itself stresses what seems to be an obvious approach to eating habits; no sugar, alcohol, or caffeine. Avoid possible food sensitives like gluten and dairy, but focus on eating plenty of fruits, veggies, and grains. Food habits like these are not revolutionary, but following such a diet in our over caffeinated and sugared culture is quite difficult. The diet itself can be broken down into a simple format depicted in this Anti-Inflammation Food Pyramid created by Dr. Andrew Weil.

The diet is helpful in living a healthy life and preventing chronic diseases, but it should be stated that each person has an individual biochemistry - meaning that not all diets are created as a one size fits all. And diet alone will not 'cure' every ailment. However, the information provided in this book was helpful in understanding the effects of inflammation of the body. What I enjoyed the most about the Anti-Inflammation Diet and Recipe Book is the Jessica Black added helpful charts for example meal plans as well as a substitutions chart for cooking without food such as wheat, eggs, butter, etc. Each substitution chart provides helpful alternatives in baking if one is cutting out dairy or gluten. For example, if you are trying to make a recipe that calls for milk, you can substitute the milk for any alternative such as almond milk, soy milk, coconut milk, etc. These charts are essential in simplifying the baking process and making it much easier to learn how to cook healthy, nutrient packed meals. 

Overall, I found the recipes in the book to be some of the most useful I have ever come across. They do not seem as intimidating as many other health food recipes I have tried in the past and many use simple ingredients that can be found in your kitchen or cupboard. In conclusion, I would have liked more of an in depth coverage of the properties of an Anti-Inflammation Diet and how nutrition plays a role in impacting our overall health and vitality, but the usefulness of the recipes in the back, as well as the sample meal plans and charts, saves this book from being passable. 

Finding a diet that fits your unique biochemistry and body is difficult and can often be a long journey. I do not follow the Anti-Inflammation Diety strickly because I find that I personally require more sources of protein in order to function properly, but I have committed to cutting out sources of cane sugar for my food sources. 

I do hope that this information is helpful to all of my readers out there! I will continue to dedicate my time to researching new, healthy ways to empower the body to heal itself. 

For more information about Jessica Black N.D. please visit her website at the following link:

http://drjessicablack.com/

Until next time, 

Feast From Within 

Personal Stories: Triumph Over Chronic Fatigue Syndrome

                                                                       Photo credit: Satish Kumar / The National
                                                      Alice Haine (right) with her personal trainer Emma White (left) in Dubai 

               The story of Alice Haine is one many of those with chronic illness or Fibromyalgia can relate to. of triumph. A year ago she was suffering from a range of debilitating symptoms that effectively stopped her life dead on the tracks. Unable to get out of bed or work full time, Haine was struggling to understand what was going on in her body. A mother of two living in the UAE, Haine was terrified that the life she had enjoyed as a wife, mother, and editor at The National- would be drastically limited by illness. In September of 2013, Haine was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. So, what was she to do next?

            With diagnosis in hand, Haine sought out to find treatments that would restore her heath. Researching online and joining support groups, she was devastated to see that many others with the same illness had spend years of their life restricted to a wheel chair or relying of care-givers. But Haine seemingly refused to accept that as her fate, and "just 10 weeks after [her] devastating diagnosis; however, [she] returned to full-time work. And today, 11 months on, [she] is almost fully recovered. So, how did [she] do it?' * 


          Haine credits her recovering to an fairly unknown treatment plan called, "Dynamic Neural Retraining System (DNRS) – a Canadian programme that remaps the brain away from a constant cycle of illness and back to full health over a period of six months...The programme was launched in 2009 by Annie Hopper, a counsellor and psychotherapist from Toronto, after she recovered from multiple chemical sensitivity (MCS). Using her professional experience and the latest research in neuroscience, she concluded that she was suffering from a limbic-system disorder where the brain is locked into a permanent trauma loop (or state of fight or flight), which makes it see everything around it as some form of threat." *   

What is the lymbic system and what role does it play in Dynamic Neural Retraining System?

              According to Haine's own article published at The National, "the limbic system is a complex set of structures in the brain that’s largely responsible for how we interpret sensory input. Several factors can impair its function, from exposure to chemicals, a virus, an emotional or physical trauma or accumulated stress. Once the system is damaged, it causes cross-wiring of the neuronal circuits in the brain and, as a result, distorted sensory perceptions."

              So, the theory is, if one can effectively train the brain to direct a positive focus away from pain and illness, then the patient can essentially re-wire the focus of the lymbic system. This theory, neuroplasticity, is revolutionary in the field of brain science. Neuroplasticity states that the brain is not a static system, but rather it is dynamic and always changing. It has plasticity. The  Dynamic Neural Retraining System utilizes this theory to create new, healthy pathways in the brain. Essentially, the sufferer of chronic illness would think themselves well.

              The program is completed in six months and is taught through a 14 hr DVD package. Each patient is directed to focus on positive brain training exercises for one hour each day. "To date, the DNRS programme has only treated 3,000 people – some on courses hosted by Hopper in North America and more than 1,800 through the 14-hour DVD that she created to reach those farther away."  More information about Hopper's program can be found at the her website http://www.dnrsystem.com/

             Treatments for fibromyalgia and any other chronic illness are often alternative in nature, due to the fact that the illness itself is still widely misunderstood by 'western' doctors. I, myself, have not yet tried the DNRS system and remain skeptical in nature. The power of the brain is truly astounding and I do believe that many people can will themselves into good health through the power of effective positive thinking. However, new 'miracle' treatments should always be taken under advisement before one makes an investment. Understanding how our body works is key in understanding how to heal, and the more we know the more answers we can unlock. Studying the function of the lymbic system and the power of the brain in rewiring old, negative thought patterns is a worth while endeavor and I will continue to do my own research into the topic. The most effective treatments for any illness usually involve an integrative approach to health. An approach that integrates 'western' and holistic medicine practices. Haine herself states that " the DNRS wasn't my only treatment"  But she does believe that, "The most important step in [her] recovery was being diagnosed, [and] the next was believing [she] could get better. There’s no one-stop solution for ­everybody, but treating both the brain and the physical symptoms was the key to [her] recovery."

           If you are interested in learning more about DNRS please follow the links above or below. In my upcoming posts I will be looking deeper into the program myself and learning more about the theories of neuroplasticity. 

Until next time,

Feast From Within

Sources:

For more information about the DNRS program, http://www.dnrsystem.com/Read more: http://www.thenational.ae/arts-lifestyle/well-being/the-road-to-recovery-a-first-hand-account-of-beating-chronic-fatigue-syndrome#page1#ixzz39XVr48CP
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