Fibromyalgia

Living a Life of Blessing and Hope

By Shannon Sonneveldt

Fibromyalgia: Living a Life of Blessing and Hope

Published by Shannon Sonneveldt

Copyright © 2013 by Shannon Sonneveldt

All rights reserved.

Contact Shannon through email: ShannonSonneveldt@gmail.com

Website: http://www.ShannonSonneveldt.com

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Cover Photography and Design by Alexis Lynn Photography and Design

http://alexislynndesigns.wix.com/design

All rights reserved.  Without limiting the rights under copyright reserved above, no part of this publication may be copied, reproduced in any format, by any means (electronic, mechanical, photocopying, recording, or otherwise) without prior written permission of both the copyright owner and publisher of this book. The scanning, uploading and distribution of this book through the Internet or any other means without prior written consent of the author is illegal and is punishable by law.

Published in the United States of America

DEDICATION

I have to start by thanking God for the many blessings he has brought into my life. For his love and faithfulness in helping me through my struggles and suffering to come out the other side with hope.

Then, as always, I have to offer thanks and love to my husband. Outside of Christ, he has been my biggest support and supporter through life’s ups and downs. He didn’t know when he promised in sickness and health, just what he was promising but has remained not only faithful to that promise but has provided me with both emotional and physical support, providing me with strength when I had none of my own. God knew what was in store and blessed me with the love of this wonderful man who heeded the call.

Thank you to everyone who shared your story with me. Through our stories and collective insights others may find hope and through that hope a life filled with blessings even through the pain. By sharing your stories you have helped others find the truth spoken in Proverbs 18:14 “The human spirit can endure a sick body, but who can bear it if the spirit is crushed.”

Table of Contents

Introduction

Fibromyalgia 101

Symptoms

Research

Resources/Additional Information

How It All Starts: Getting Hit by the Fibro Freight Train

Diagnosis Journey: The Revolving Door of Doctors

Resources

Moving Forward: From the Hamster Wheel to The Tight Rope

The Hamster Wheel

The Tightrope

A New Life Plan

Spirituality and Faith

Healthy Lifestyle

Understand Your Triggers

Moderating Activity Levels/Exercise

Stress and Relaxation Techniques

Diet

Sleep

Traditional and Alternative Treatments

Relationships

Resources/Additional Information

Living a Blessed Life and Blessing Others

Tips from Fellow Fibromyalgians

Resources/Additional Information

Thank You

About the Author

Additional Books by Shannon Sonneveldt

Experience Life in Poetry: Random Life Observations, Parenthood and Growing-up (Volume 1)

Experience Life in Poetry: Family, Friends and Romantic Relationships (Volume 2)

Experience Life in Poetry: Seeking, Accepting and Following God (Volume 3)

Introduction

The tough thing about life is it’s just so daily. – Mike Howerton, Glorious Mess

Imagine that you wake up one morning to your alarm clock, ready to go about your day as usual. You try to roll over to get out of bed when you are struck by such agonizing pain that you cry out. Your loved one comes into the room and asks what is wrong. You say you don’t know but that the pain is so awful you can’t move. You whisper because sound is magnified in your brain and even the normal sound of your own voice sends shooting pain through your head. Your loved one turns on the light, you immediately squeeze your eyes shut because the light also produces pain. Your loved one leans over you, takes a long look and on a sigh of exasperation says “You look fine. Suck it up and get a move on or we’ll be running late.”

Can you imagine it? Does it sound far fetched? For the millions of people, yes I said millions, diagnosed with Fibromyalgia they have lived far worse than what is depicted in this simplified scenario. A chronic condition that leaves millions of people with debilitating pain in a world full of people that don’t believe them, Fibromyalgia takes a toll physically, mentally and relationally. Often left with little information, few answers and little to no support those diagnosed with Fibromyalgia feel cut off from the ‘normal’ people in their world, a species alone and adrift – a Fibromyalgian.

As a Fibromyalgian, I am writing this book for those who want to understand us, but more importantly for those like me. I am writing it so you know you are not alone.  There are millions of us and we can work together for better understanding and support. Through each other we can educate ourselves and others on Fibromyalgia, what we experience, what treatment options have shown success and recent advances in research. Most importantly, we can help each other get from a life filled with pain and bitterness to a life of blessing and hope. One day at a time we can each get there if we support, encourage and educate each other.

Please know I am not a doctor, not licensed to practice in any state or country. I am not a medical researcher and don’t own stock in any pharmaceutical companies. I know and can share my story and the stories of those who have chosen to share theirs with me. I know the impact that Fibromyalgia (FM) has had on my health, my life and my relationships. I can share common factors I have seen across the stories that have been shared with me and that I have read. I can share resources where you can find additional information and current research being conducted around FM. This book is in no way intended to serve as medical advice but to present information on the condition and share stories of other Fibromyalgians for support and encouragement for the purpose of helping each of us get closer to a life filled with blessings and hope – because it is possible!

(Note: All resources and websites were available and live at the time this book was published.)

Fibromyalgia 101

Fairness does not determine truth. – Andy Stanley, How Good is Good Enough

For family and friends of a Fibromyalgian or those recently diagnosed or any who need or want a better understanding of what FM is, I have included some basics about the condition. There are a number of resources available that can provide additional information provided at the end of this chapter and throughout the book should you want to continue your education.

Symptoms

Fibromyalgia affects three to five percent of the general population. According to the American College of Rheumatology, Fibromyalgia affects more than 12.3 million people in the United States alone.  This includes men, women and children. Even with so many people diagnosed, there is a surprising lack of information about the causes of the condition – although recent strides in research are being made. The range of symptoms that a Fibromyalgian suffers from has created difficulties in finding answers and gaining acceptance for the condition in medical circles. While not all Fibromyalgians will experience every symptom listed below, the common or typical symptoms for Fibromyalgia include:

·   All over chronic pain

·   Fatigue

·   Sleep difficulties

·   Brain fog (otherwise known as Fibro Fog)

·   Morning stiffness

·   Muscle knots, cramping, weakness

·   Digestive disorders

·   Headaches/migraines

·   Balance problems

·   Itchy/burning skin

·   Numbness and tingling sensations in extremities

·   Chest pain

·   Swelling sensations

·   Sensitivity to loud sounds

·   Sensitivity to odors

·   Sensitivity to bright lights

·   Sensitivity to tastes

·   Dry, burning eyes

A research study published in 2012 showed that among the patients studied the average number of associated conditions diagnosed was five. This means that in addition to the diagnosis of Fibromyalgia, it is common for a Fibromyalgian to be diagnosed with an average of five additional conditions. Below are the conditions and the percentage of patients in the study that experienced each condition.

This is not an all-inclusive list of the additional conditions a Fibromyalgian might be diagnosed with but a reflection of those found in the 150 who took place in the study. For example, I have four of the conditions from this list plus multiple other conditions that include Sleep Disturbance/Chronic Multifactorial Fatigue, Reynauds, digestive disorders not identified on the chart, MitroValve Prolapse, and Apothous Ulcers. Others I spoke with had Fifth’s Disease, Chronic Fatigue Syndrome, a multitude of different sleep disorders ranging from insomnia to falling asleep unexpectedly, Myofacial Pain Syndrome, Myalgic Encephalomyelitis and more.

Research

There is not widespread agreement on the cause of Fibromyalgia, although research in the last few years has begun to provide some answers. As explained on the ProHealth website:

“There is little disagreement that onset (of Fibromyalgia) is usually triggered by some form of trauma. The trauma may be physical, in the form of an injury or illness, or it could be an emotional trauma that produces severe, prolonged stress.

Some research seems to indicate that some people have a genetic predisposition to Fibromyalgia, although the symptoms usually do not show up until triggered by one of these traumas.

One popular theory as to the cause of Fibromyalgia is that a trauma or significant stressor turns on an individual's "fight-or-flight" response. This response, designed to help us function in an emergency situation, usually only lasts a short time, then turns itself off.

But when the stress becomes prolonged, the fight-or-flight response gets stuck in the "on" position and the person's body remains in a state of high alert. Being in a constant state of high alert puts even more stress on the body. This results in, among other things, a loss of deep, restorative sleep, which in turn causes pain amplification throughout the body.

Regardless of what initially triggers the illness, research has shown that Fibromyalgia patients have very real physical abnormalities, including:

·   Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems Fibromyalgia patients experience.

·   High levels of "substance P," a central nervous system neurotransmitter involved in pain processing.

·   Low levels of nerve growth factor.

·   Low levels of somatomedin C, a hormone that promotes bone and muscle growth.

·   Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.

·   Low levels of phosphocreatine and adenosine, muscle-cell chemicals.”

Fibromyalgia research has increased over the last several years. Below is some of the research conducted in 2012 and 2013 as well as information about a study being conducted that should produce additional results in 2014. Research is ongoing and, regardless of the title of the articles, there has been no confirmation of cause or improved treatments. I provide the information below for your review of the direction of the research and any findings that have been outlined. The links are provided to all articles for those who want to learn more about the different articles, studies and research efforts taking place.

2014 Research Being Conducted

The article ‘Big Antiviral Trial Could Usher in New Treatment Era for Fibromyalgia’ outlines a research study that looks at the role of viruses and the immune system in FM.  The article references the research proposing an immune biomarker (see the article ‘Researchers Assert Inexpensive Biomarker for Fibromyalgia Found: Immune System Implicated’ referenced under the 2013 research section) and the research linking “small-fiber neuropathy (SFN) – possibly caused by immune dysregulation” (see the SFN research studies discussed in the 2013 research section). The placebo controlled, double-blinded multi-center antiviral trial was scheduled to start in October 2013 and end in early 2014. The study will test the theory of Dr. William Pridgen that “a nerve loving virus (herpes simplex viruses) takes up residence for life in nerves in the sensory ganglia found across the body. The study will combine the use of antivirals with an anti-inflammatory medicine that has antiviral properties. Pridgen proposes that the two drugs hit the virus at different stages of its life-cycle and will finally stop the virus from reactivating. In addition, the study will attempt to develop a diagnostic test for Fibromyalgia.” In a February 19, 2014 press release, it was announced that phase 2 trial results are expected to be ready before mid-year 2014. Review the article for more details on the study.

2013 Research Results

Several research articles and papers were published or reported on in 2013. While the research continues, we can find hope in the fact that similarities can be found across studies and new answers and directions for research continue to be found. I am encouraged that better treatments and potentially a cure for the condition may be found in the future.

Several research studies have found a connection between people with Fibromyalgia and small fiber neuropathy (SFN). “People with small-fiber neuropathy get faulty signals from tiny nerves all over the body, including internal organs, causing an odd constellation of symptoms from pain to sleep and digestive problems that overlap with symptoms of Fibromyalgia.” (New Research Sheds Light on Mysterious Fibromyalgia Pain). Another quote form this article that brings a smile to me as a Fibromyalgian is, “Neuroscientist Frank Rice and a team based at Albany Medical College also discovered that there are excessive nerve fibers lining the blood vessels of the skin of Fibromyalgia patients – removing any doubt that the condition is physically real.” Additional quotes of interest from the article discussing this research include:

·         “In recent years, scans of patients with Fibromyalgia have revealed brain changes associated with pain, but the new research suggests these are a symptom rather than the cause of the condition.”

·         “Rheumatologist Richard Chou says there is some preliminary evidence that the nerve damage is caused by the immune system. ‘We’re hoping someday we’ll be able to say exactly how your immune system is causing damage to the sensory nerves that results in Fibromyalgia pain.”

Another study that connected Fibromyalgia to SFN explained that the SFN found in Fibromyalgia patients is different from the “kind of SFN usually seen.” The authors of the study suggested “that the small nerve fiber problems they found in the skin probably extended to the nerve fibers associated with the muscles and joints, and that ion channel dysregulation probably caused both the small fiber problems and the neuron problems associated with central sensitization… In short, they believe the same general problem is causing the small nerve fiber problems in the skin, muscles and joints, as well as neuron problems in the brain and spinal cord.” (Small Nerve Fiber Neuropathy Commonly Found in Fibromyalgia). Other interesting notes form this article, include:

·         Study results suggest that “FM patients’ nervous systems were inordinately provoked by the initial pain signals and had trouble turning them off. This kind of continuing arousal can be seen in a number of instances in FM…: in contracting muscles that never completely relax in FM, in a heart rate that does not calm down during rest, and in a sympathetic nervous system activation that doesn’t stop…an event (infection, trauma) triggers a response (sickness behavior and/or pain) that should get ameliorated over time, but the return response, which should swing the system back to homeostasis, doesn’t kick in.”

·         The study also revealed that the subset of FM patients that also suffered from migraines (40% of the group) had it even worse during the study. “By the third pinprick their nervous system response had not only not habituated, but had significantly increased indicating that their pain response system was revving up when it should have been revving down… This inability to reduce the central nervous system response to pain signals turned out to be important as it was associated more than any other finding with reduced quality of life and increased pain levels at the FM tender points.”

Yet another article (Fibromyalgia Mystery Finally Solved!) reports research results claiming sensory nerve fibers as the main source of pain in Fibromyalgians. In this study, researchers focused on the skin from the hand. Researchers “took skin samples from the hands of Fibromyalgia patients and were surprised to find an extremely excessive amount of a particular type of nerve fiber called arteriole-venule (AV) shunts. Up until this point scientists had thought that these fibers were only responsible for regulating blood flow, and did not play any role in pain sensation, but now they’ve discovered that there is a direct link between these nerves and the widespread body pain that Fibromyalgia sufferers feel.” According to Neuroscientist Dr. Frank L. Rice, “[The] mismanaged blood flow could be the source of muscular pain and achiness, and the sense of fatigue which are thought to be due to a build-up of lactic acid and low levels of inflammation in Fibromyalgia patients. This, in turn, could contribute to the hyperactivity of the brain.”  This supports the research results from 2010 conducted by Dr. Rice and other scientists at Intidyn (Integrated Tissue Dynamics). A summary of the research was provided in the ‘Rational Biological Source of FM Pain in Skin’ article.

Finally, the article ‘Researchers Assert Inexpensive Biomarker for Fibromyalgia Found: Immune System Implicated’ explains that Ohio State University researchers assert they found a cheap and readily available biomarker for Fibromyalgia. The researchers used a process called “infrared micro-spectroscopy that analyses ‘spectra’ to determine the chemical composition of the tissue or the blood.” The results of the study indicate that increased levels of three compounds – tryptophan, kynrenine (KNN) and pyridine carboxylate – can identify FM patients. According to the article “the appearance of kynrenine suggested that rapid tryptophan breakdown is occurring in FM. Since tryptophan is the precursor to serotonin and melatonin, low tryptophan levels could translate into low serotonin and melatonin levels.” The article also stated that “if KNN does play a role in FM, the entire process could start with inflammation triggering IDO to break-down tryptophan, releasing KNN and quinolinic acid and other factors which then produce havoc.” The following was the conclusion drawn from the research, “We got really good evidence of a test that could be an important aid in the diagnosis of FM patients. We would like this to lead to an objective test for primary care doctors to us, which could produce a diagnosis as much as five years before it usually occurs.”

2012 Research

A research study posted on ProHealth.com revealed that patients with Fibromyalgia have a dysregulation disorder affecting protein molecules called chemokines and cytokines, produced by white blood cells. While Fibromyalgians have been classified to be hyperactive (or overactive) responders, the study showed that Fibromyalgians have immune production patterns which may make them more vulnerable to stress, thereby leading to chronic pain, severe fatigue, diffuse muscle tenderness, insomnia, and other unbearable symptoms long associated with Fibromyalgia. (Read the full article New Peer-Reviewed Research Identifies Diagnostic Biomarkers for Fibromyalgia at ProHealth.com)

The Fibromyalgia Network posts articles on the results of Fibromyalgia research being conducted around the world on their website. And in these articles the following has been reported:

·   A study conducted by Seong-Ho Kim, M.D. shows that alterations in the way the central nervous system works is not the only source of the chronic pain suffered by Fibromyalgians. The immune cells surrounding the nerve endings in the skin appear to be contributing to the pain as well. The research showed that the pain-producing chemicals secreted by the immune cells are present in high concentration for Fibromyalgians. These chemicals (cytokines) activate nearby nerve endings and make the skin hurt as well causing flu-like achiness everywhere. In order for someone to actually feel pain, transmissions from your skin, muscles and other tissues have to reach a level of consciousness in your brain. Otherwise, all sensations, including light touch, would hurt. That’s where your spinal cord comes in handy. The cord’s role is to filter out the less serious nerve signals traveling from your tissues to your brain and from your brain out to your tissues. In essence, your spinal cord works like a pain filter, but studies show it’s doing a poor job in Fibromyalgians. Dr. Kim’s team suspects that fibro patients have too many signals traveling down through the cord to the tiny nerves in the skin, causing the fibers to become over stimulated. This results in the secretion of pain-promoting cytokines mentioned earlier that irritate nearby nerve fibers. The irritated nerve fibers in the skin then start relaying signals back to the spinal cord, saying, “Ouch … help me out!” But the cord fails to filter the signals and the brain shoots more transmissions back to the tissues. This process leaves you with painful skin, even though it looks normal. The same situation likely occurs in your muscles to make them ache. (Read the full article Why head to Toe Pain article at the Fibromyalgia Network)

·   In the same article as the one just mentioned, research conducted by James Baraniuk, M.D. and Daniel Clauw, M.D. was referenced. Their study measured the levels of the bodies naturally produced opioid-like endorphins called enkephalins (the body’s natural pain killer) in both Fibromyalgians, patients with low-back pain and healthy or pain free individuals. The results showed that the concentration of this natural pain killer in Fibromyalgians was almost fourfold greater than the healthy group. The concentration for those with back pain was almost as high as that in the Fibromyalgians. The results of the study showed that the Fibromyalgian’s spinal cord is pouring out natural painkillers but that it’s inadequate to relieve the many areas that hurt. The team then measured the number of brain receptor sites that the natural pain killer targets to put out the pain and found that compared to healthy individuals Fibromyalgians had fewer receptors available to regulate the pain.  The conclusions drawn from these studies discussed in the article is that a Fibromyalgian’s body is trying to put out the pain by producing large amounts of opioid-like endorphins (e.g., enkephalins). But opioids don’t just relieve pain; they also activate immune cells to release cytokines to help heal injuries (usually a temporary process). Despite no signs of tissue destruction in fibro, the immune system seems to think there is. This means your body’s attempts to ease discomfort backfires (e.g., the pain-promoting cytokines win out over the opioids), leading to more rather than less pain. (Read the full article Why head to Toe Pain article at the Fibromyalgia Network)

·   Another article from the Fibromyalgia Network focuses on research around sensory overload in Fibromyalgians. This article looks at information from Daniel Clauw, M.D. and Michael Geisser, Ph.D. Dr. Clauw was quoted “This disease spares no area of the body, which only makes sense because we get sensory input from everywhere, including the eyes.” He believes that there is an alteration in the way the brain processes all sensory-related input, not just pain, in Fibromyalgians. Dr. Geisser’s study shows that the pain levels of Fibromyalgia are directly tied to these other annoying sensory symptoms. Patients with a greater number and severity of sensory symptoms (such as those highlighted above) tended to predict higher pain scores, a greater number of physical symptoms, and reduced functional capacity. In other words, the more your sensory symptoms become amplified, the worse your Fibromyalgia will become. (Read the full article Is Sensory Overload Part of Your Fibromyalgia? at the Fibromyalgia Network)

·   A 2012 research study by Nuray Akkaya, M.D. showed that the quality of sleep a Fibromyalgian experiences the night before will play a major role in the ability to navigate movements the next day. The study compared balance of Fibromyalgians and healthy individuals.  The fall risk computed for Fibromyalgians was double that of the health control group. Dr. Akkaya is quoted as saying “Postural performance (balance) was worse in the Fibromyalgia patients compared to the control subjects and it was related to the severity of fatigue and sleep quality in the last 24 hours. Fall risk was found to be related to lower-body strength and scores for the one-leg stance test.” However, the duration of fibro, rating of pain, overall function, and quality of sleep for the past week (not just the previous night) were NOT related to balance in the Fibromyalgia patients. (Read the full article Why Fibromyalgia is a Balancing Act at the Fibromyalgia Network)

I have referenced just some of the recent research and articles available. As research continues we Fibromyalgians can find hope in continued progress and answers that will make the diagnosis process (discussed later in this book) shorter and more accurate and treatment options (discussed later in this book) more effective.

“The path to quitting is permanently paved when someone allows quitting to become an option.” – Chad Williams in Seal of God

Resources/Additional Information

There is a ton of information on the Internet that will help educate you on what Fibromyalgia is, common symptoms and ongoing research. Some sites I have found to be most helpful and accurate are listed here for those who would like to continue their education.

·   Fibromyalgia Network - http://www.fmnetnews.com/

·   FibroCenter -  http://www.fibrocenter.com/index.aspx

·   National Fibromyalgia & Chronic Pain Association: http://www.fmcpaware.org/

·   National Fibromyalgia Association - http://fmaware.org/site/PageServer.html

·   ProHealth - http://www.prohealth.com/

·   Mayo Clinic Fibromyalgia - http://www.mayoclinic.com/health/fibromyalgia/DS00079

·   WebMD Fibromyalgia Health Center - http://www.webmd.com/fibromyalgia/default.htm

·   Additional FM Research and News - http://www.fmnetnews.com/category/breakthroughs

·   Heart Abnormalities in Chronic Fatigue Syndrome - http://chronicfatigue.about.com/od/symptoms/a/Heart-Abnormalities-In-Chronic-Fatigue-Syndrome.htm

·   Big Antiviral Trial Could Usher in New Treatment Era for Fibromyalgia - http://www.prohealth.com/library/print.cfm?libid=18809

·   Researchers Assert Inexpensive Biomarker for Fibromyalgia Found: Immune System Implicated - http://www.prohealth.com/library/print.cfm?libid=18347

·   New Research Sheds Light on Mysterious Fibromyalgia Pain - http://www.usatoday.com/story/news/nation/2013/12/15/fibromyalgia-research-breakthrough/3991063/

·   Small Nerve Fiber Neuropathy Commonly Found in Fibromyalgia - http://www.prohealth.com/library/print.cfm?libid=18616

·   Fibromyalgia Mystery Finally Solved! - http://guardianlv.com/2013/06/fibromyalgia-mystery-finally-solved/

·   Rational Biological Source of FM Pain in Skin - http://www.fmcpaware.org/rational-biological-source-of-fm-pain-in-skin.html

How It All Starts: Getting Hit by the Fibro Freight Train

I am worn out from sobbing. Every night tears drench my bed; my pillow is wet from weeping. – Psalm 6:6

As mentioned in the Fibro 101 chapter, it is generally agreed that Fibromyalgia is triggered by a traumatic event, occurs in people with a genetic predisposition to the condition or a combination of the two. Can you pinpoint the trigger for you?

In hindsight (truly what would we do or learn without hindsight!) I see I began having problems with those ‘associated’ conditions or diagnoses long before the Fibromyalgia symptoms began. I had migraines and digestive disorders first. Perhaps I am genetically predisposed and my trigger was pregnancy and the birth of my son – who knows for sure, but it’s a theory. It was a difficult (both physically and emotionally) and frightening pregnancy and delivery and my health seemed to continue to decline after his birth. If this was my trigger, I can’t regret or bemoan my situation, as he was and is a blessing worth any suffering I may have or must continue to endure.  While I declined, again in hindsight, I see the progression as symptoms were added to my list of complaints. This included several instances of driving to pick my son up from daycare and finding myself forgetting not only where I was going, but why and how to get there – and this was driving to a place I drove to twice a day five days a week. Other’s who have shared their stories also had fibro fog show up in this same method. This was my fibro fog in action. Again who knows really what caused the escalation of my symptoms, but perhaps it was my son’s ongoing health problems throughout his earlier years that was the prolonged stressor or trauma that finally resulted in my head first collision with the Fibro Freight train.

Many Fibromyalgians will understand. There comes that day where everything has become excruciating, you have so many symptoms and so many places that hurt in a way that is beyond description that you can’t put any of it into words, if you are even able to come up with a single coherent thought. I couldn’t get out of bed or off the couch. I couldn’t walk to the mailbox much less run up to 10 miles like I was accustomed to doing in addition to the many other activities and day to day chores I could no longer do. There wasn’t a part of my body that wasn’t in excruciating pain. I was constantly in tears. No one could touch me.  I couldn’t hug my son or my husband. The lightest touch to the arm felt like someone was cutting the limb off. Wearing clothes was an exercise in torture (I am confident in saying that everyone in my life was thankful and blessed that I endured the torture and didn’t walk around naked). I wasn’t sleeping. No matter how exhausted my mind and body were, sleep wouldn’t come. I couldn’t figure out how that was possible. If I managed to take a shower, I had to lie down and rest between each step of getting dressed – shower, rest, put clothes on, rest, brush hair, rest… you get the picture. The migraines and digestive problems were worse than ever. My senses, which had always been somewhat sensitive, were off the charts. I couldn’t stomach most smells, noise – even at normal levels – made my head want to explode, bright lights brought headaches, dizziness and nausea. I felt sick to my stomach all the time. The list goes on. And yet, on the outside, to most people, I looked fine. No major wounds or injuries to account for the pain and no way for me to prove to those around me just how much pain I was in when I had had no recent traumas, accidents or injuries to explain the ‘sudden’ development of these symptoms. Body meet freight train.

Other’s I’ve talked to have had similar situations. One can trace the start of her symptoms to suffering from Fifth’s disease. After the disease ran its course she was left in pain. She was achy and with especially tender hands and feet. She had stepped onto the tracks, waiting for the train.

Another can look back and see that after having surgery her symptoms began to appear slowly over a period of time. In less than a year and half this Fibromyalgian lost the ability to complete simple tasks. Tasks such as vacuuming and pushing a shopping cart became impossible. Too much pain after walking short distances, standing in line for more than five minutes along with a ‘bone breaking muscle fatigue’, an unrelenting, continual ache that radiated from the core of the body, low back pain and chest pains all severely limited activity and created a frightening reality that had to be lived each and every day. Body meet freight train.

Other’s trace the beginning to specific injuries such as fracturing a hip in a fall, accidents resulting in injury or trauma, neck or back problems, or child birth; but many are unable to put a finger on a specific event that triggered the start of their Fibromyalgia journey. Perhaps there was prolonged stress or perhaps it was genetic and their body triggered all on it’s own. Whatever the trigger was or is that started the journey, for myself and everyone I spoke with, it had the same end result. You guessed it – body meet freight train.

There’s no other way to say it, it sucks! But know you are not alone. There are others who have been there, who understand the darkness and suffering and who have made it out of the tunnel and back into the light. The journey wasn’t and isn’t easy, but with faith and support we can all make it to the other side.

When a train goes through a tunnel and it gets dark, you don’t throw away the ticket and jump off. You sit still and trust the engineer. – Corrie ten Boom

Diagnosis Journey: The Revolving Door of Doctors

Never doubt in the dark what God told you in the light. – Raymond Edman

How long was your diagnosis journey? The research I’ve done and the stories I’ve listened to indicate it is truly a journey. On average it takes between three and five years to get a diagnosis. This process is time consuming and frustrating and is marked by years of doctors and medical test after medical test while the Fibromyalgian continues to suffer from multiple life altering symptoms. This long and frustrating journey is in part due to the fact that the many FM symptoms mirror those of other conditions that must be ruled out before an FM diagnosis can be made. In addition, the process is complicated by the fact that most Fibromyalgians suffer from multiple conditions.

2013 News and a reason to hope!  Research has been done that discovered links between Fibromyalgia and many other conditions. Also reported, is that one research study conducted has determined there is a blood test that can now diagnose Fibromyalgia. These are all new studies and I’m sure will continue to be tested by others. There are links to these studies and additional research in the resources section below for those who are interested in learning more. So know that research is being done and there is hope for a faster, more definitive diagnosis as well as alternative treatment options. (See links at the end of this chapter for more information)

Another common factor among many Fibromyalgians on this journey is the frustration and anger that comes when dealing with many in the medical community who do not feel Fibromyalgia is a legitimate diagnosis or condition. This adds to the level of stress and exacerbates the condition during the stressful period of diagnosis. This in addition to the current nature of the diagnosis process leads to a phenomena I think of as the Revolving Door of Doctors. Specialist after specialist, doctor after doctor, either to run more tests, test for other possible diagnoses or changing doctors because of the lack of care and empathy, many Fibromyalgians find themselves spinning through this door for years.

While I ran into my share of doctors who believed I was a hypochondriac or that it was all in my head, I was fortunate to find a doctor who demonstrated what, to me at least, a doctor should be like: caring, empathetic, and a good listener – well and knowledgeable helps.  I had found a doctor that didn’t look at me like I was crazy when I would explain symptom after symptom after symptom and tell me it was all in my head or I was just depressed. A doctor that listened, looked at me and focused on what I was saying. It is unfortunate that I can say how rare, or perhaps more accurately how difficult, it can be to find a doctor like this. I know I was truly blessed the day I walked into her office. My doctor has seen me cry more than anyone, other than my husband. She has seen me in great pain and at the end of my rope and has never once made me feel like I was wasting her time, making things up or going crazy. I am not sure if she truly understands the gift she gave me when my husband and I walked into her office or how huge a blessing she was and is in my life, brought to me to help me through the darkest parts of the tunnel. She has never been afraid to think outside the box, refer me to a specialist or another doctor, or run any test that might help us determine what was wrong.

My journey included a revolving door of doctors, I feel like over time I saw just about every specialist there is – although I’m sure this is a slight exaggeration. I can’t even remember them all, but of those I do remember, I recall some more fondly than others. I believe all, or most, Fibromyalgians have at least one totally horrible experience with a doctor. For me the one that stands out the most and that I will never forget was a doctor who had decided I had MS but that before formally diagnosing me with the condition, wanted an MRI to confirm the diagnosis. I remember sitting in his office after an MRI came back normal. He came in, sat at the desk in the room and explained that the test was normal and since I was still experiencing pain, he would increase the dose of medicine he had prescribed and we’d try another MRI when I flared up. I don’t recall him looking at me once during that visit. A visit where I was in so much pain I could barely move and couldn’t stop the tears from flowing down my face. He didn’t ask, he didn’t see, he didn’t care. All I could think as I was leaving that appointment, was if I wasn’t suffering a flare with the amount of pain I was in, how much worse was it going to get?

My husband and I went back to my primary doctor who immediately scheduled a spinal tap to put to rest the question of whether or not I had MS and scheduled me with a different specialist (who turned out to be pretty great too – so he’s on my list of great doctors to call should I ever need him – though I pray to God I never have to).

Turns out, I did not have MS, I know how surprised you must be. While this was a relief it was also a let down. Other Fibromyalgians will understand. After suffering over a long period of time, with test after test coming back normal, you begin praying for just one to come back saying something is wrong. Something to confirm that it’s not all in your head, that you are not crazy. It’s hard for people to understand wanting test results to say you are sick, but when the alternative seems to be you’re making it up, this is exactly what you hope and pray for. After years of suffering, test after test saying you are fine, you start to doubt yourself. Maybe it is all in your head, maybe you do need to just suck it up and quit being a baby. Those are all thoughts I had and from other people’s stories I know I am not alone. Thankfully, I had the full support of a loving husband who saw my pain and of course the continued support of a very caring physician. I also, had the benefit of having some symptoms that were visible to others. I turned colors (that would be the Reynauds – and interesting phenomenon), I had sever digestive issues resulting in bleeding, I had hair loss and mouth sores. These were tangible, other people could see them so at least in this, even if not in the pain, I knew I wasn’t crazy. I was diagnosed with FM in 2007 though we continued testing to be sure nothing was missed. Particularly since some of the symptoms didn’t seem to fit nicely in the Fibromyalgia box, or at least what we knew of the box – of course this turns out to be because there was more going on than just FM, which again is common for Fibromyalgians. The additional problems may differ, but I have yet to meet someone with FM that only has FM.

Over the next three years I remained under the care of my primary doctor and a gastroenterologist. My digestive problems continued to cycle and escalate. After failing to get these symptoms under control for any length of time, we began to look into more intense treatments. Before beginning any of these regimens however, my doctor wanted to do a colonoscopy (can you feel the joy radiating through me as I type the word colonoscopy <read with sarcasm>) to confirm the problem. I had had this procedure several times (again feel the joy) over the years with mixed results. Thank God that the doctor, also one of the great ones, decided to be sure before beginning the intense treatment regimen on the table. As it turns out, there was no sign of an active Crohns or ulcerative colitis flare-up (the diagnosis we had been operating under for the last several years) causing the current problem. This, along with symptoms of hair loss and chronic mouth sores, sent me to the Mayo Clinic for continued evaluation and testing. It was something to behold, the number of tests they can put you through in a short period of time. Comfortable and fun, absolutely not. Productive and worth it, absolutely yes. Upon leaving the Mayo Clinic I had a list of conditions that covered all the symptoms I experienced, among them a confirmation (from every doctor I saw while there) that I was a Fibromyalgian – I was an official member of the club. I now had a list of diagnoses and could begin to focus on how to move forward now that I had some answers

My story is not so different from the many who have shared their stories with me, though everyone has some unique elements and experiences. One person’s diagnosis journey took 10 years and included testing for Muscular Dystrophy, Syphilis, bleeding disorders and other nerve disorders. Another’s journey was just over a year in duration but was filled with frustration and disappointment. In pain, unable to do the simplest of tasks she was treated by individuals in and out of the medical community as a ‘faker, exaggerator, someone who just wanted attention or had hypochondriac feelings.’ People in her life viewed her has lazy and had to face several trips to the emergency room where she had to deal with more uncooperative and uncaring doctors. It wasn’t until she too, went out of state to a clinic specializing in Fibromyalgia that she was treated kindly and with respect and accuracy and was able to find ways to move forward. (For more Fibromyalgian stories see the links below).

The diagnosis journey, is painful, frustrating and can be damaging to the individual and the relationships in their lives. Through the pain, the disbelief of others, the disintegration of relationships, it’s important to cling to hope, to have faith, to believe that you will make it through. Whether you are going through the diagnosis journey or have completed that journey and are trying to move forward, find hope in God’s promise:

And the Holy Spirit helps us in our distress. For we don’t even know what we should pray for, nor how we should pray. But the Holy Spirit prays for us with groanings that cannot be expressed in words. – Romans 8:26

When I didn’t know what to pray, what to ask for, what to hold on to, I found Him blessing me. He blessed me with a doctor who cared and listened, with the ability to travel to where I needed to be to complete my diagnosis journey, with a husband who stood beside me as my champion, my supporter, my friend and my love. As painful, and dark as the journey was, I can look back now and see the blessings I was given. If you look back, can you see your blessings? Seeing these blessings, no matter how small, is a step towards moving forward into a life filled with blessings and hope.

Resources

Find hope in the progress being made in research for diagnosing and treating Fibromyalgia. Below are a couple of links to some resent research for those interested in the full details.

·   The full research study that resulted in the FM test - http://www.biomedcentral.com/1472-6890/12/25

·   The FM/a Test – Information about the test to definitively and objectively diagnose Fibromyalgia including a questionnaire for you and your doctor to see if you qualify for the test - http://thefmtest.com/

·   Find more Fibromyalgian stories

o   FibroCenter: http://www.fibrocenter.com/fibromyalgia-stories-tips.aspx

o   National Fibromyalgia Association (including a gentleman able to return to triathlons!): http://fmaware.org/PageServer4311.html?pagename=community_patientStories

Moving Forward: From the Hamster Wheel to The Tight Rope

Faith came singing into my room, and other guests took flight. Grief, anxiety, fear and gloom, sped out into the night. I wondered that such peace could be, but faith said gently ‘Don’t you see that they can never live with me?’ – Elizabeth Cheney

You have the diagnosis, now what? Getting the diagnosis (well, all of them) is great, but what then? Then you have to learn how to move forward and live a full life with FM. There is no cure, but there are methods that have helped me and other Fibromyalgians to live a full and blessed life even with FM.

Once I had a diagnosis of FM, I began to research the condition and I also called a friend who had mentioned to me that she had Fibromyalgia. Reaching out to her was one of the best things I could have done. Talking to someone who understood, who could finish my sentence about the pain or other symptoms I was feeling was such a relief. I wasn’t alone and I wasn’t crazy. Someone else got it.

After talking to my friend, I remember researching Fibromyalgia and looking at the list of symptoms. I was amazed. I read the list of symptoms and it was like a checklist I could have written to take to the doctor about what I was experiencing:

·   Chronic muscle pain, muscle spasms or tightness – check

·   Insomnia – check

·   Tension or migraine headaches – check

·   Abdominal pain, bloating, nausea, and constipation alternating with diarrhea or other digestive problems – check

·   Jaw and facial tenderness – check

·   Sensitivity to one or more of the following: odors, noise, bright lights, cold – check, check , check and check

·   Numbness or tingling in the face, arms, hands, legs or feet – check

·   A feeling of swelling (without actual swelling) in the hands and feet – check

I could go on but you get the idea. It was amazing to me! I was so excited to finally have a name to go with what I had been experiencing –I wasn’t crazy and it wasn’t all in my head. I had validation.

Once the excitement over FINALLY having a diagnosis passed, it dawned on me that it wasn’t going away, there is no cure; I had to figure out how to move forward from here. I could choose self-pity, anger and bitterness or I could choose to find a way forward. And I didn’t just want a way forward, I wanted to live fully not just exist.

My husband and I attended an FM treatment clinic while at Mayo. Walking into that room, it was like walking into a wall of pain, desperation and discouragement. You could practically see the pain radiating from the Fibromyalgians in the room and feel the anxiousness of the loved ones there to support them. The clinic was the first step forward for both my husband and me. It provided me with additional information on how to live with FM. It was great because it gave me additional information and insight into FM as well as shedding light on lifestyle changes I needed to make. But it also allowed my husband to hear the information and gain the same insights. I specifically remember one exercise that was eye opening to both my husband and I. They had us all stand in a circle and took us through the exercises that we should/could be doing at home. My husband and I had enjoyed working out together and both enjoyed fairly intense workouts (yeah I know we were those crazy people). It was a shocker to see what was now considered exercise for me. It also sent off a light bulb in my head about why I would continually flare up. I’d have a good day and think, I need to exercise. That’s good. What was bad? I would try to exercise at the same level I did before the symptoms began while maintaining my work schedule, trying to cook and clean and do all the things I didn’t get done on my bad days. That’s bad. This experience helped my husband and I get on the same page and brought us closer to determining what we needed to change and how we would work together to make it happen. I am blessed to have such a supportive and loving husband patient enough to stand with me through the pain and all the changes. I was blessed to have had the opportunity to learn more about FM and the changes I needed to make in a way and an environment that made it real for me – because apparently I was pretty hard headed about making changes and this was the slap on the head I needed.

I had a choice in what I did with and how I perceived the information that I had FM and will have it for the rest of my life. I have to admit, I struggled in figuring out how to find a life after the diagnosis and while I made some progress before going to the Mayo Clinic I was far from having things under control and living what I felt was a blessed life.

The Hamster Wheel

Until the pain of our current situation becomes greater than the pain of change, we continue in our self-defeating ways. – Mike Howerton in Glorious Mess

I felt excitement at having a diagnosis and was thankful that it wasn’t something fatal. Then I began to realize that while not fatal, it was life altering and the fibro clinic confirmed this. My life as I had known it prior to becoming ill, was over. I would never be able to do the things I once could do or live the way I had enjoyed before this all began. But I’m stubborn and it took me a long time to get to a point where I accepted this fact – as I’ve mentioned sometimes you have to smack me over the head before I get the point or learn the lesson.

Like many other Fibromyalgians, I jumped onto the hamster wheel and ran and ran. Continuing the cycle that would throw me into major flare-ups and keep me in a constant state of pain. I would finally, against all odds and my own stubbornness, have a good day and think, hey I feel good today I can get so much done! I can work all day, workout on the elliptical machine (or run on the treadmill), play with my son, etc. All that activity would then spin me into a flare-up. So I would minimize my activity, rest, and recuperate. This is even after having gone through rounds of physical therapy that clearly outlined the best exercises, stretches and the importance of moderating activity levels. But in my stubborn brain, those tips were for when I was in a flare-up, for the really bad days. I’d use these and again, I would have another good day or feel even slightly better and overwork myself again. As I said, I’m stubborn and this hamster wheel cycle went on for years before I finally started to wise up.

I needed balance across all areas of my life. It was hard, and I realized while at the Fibromyalgia Clinic that what I had failed or been unable to do was accept the death of my past life and grieve that loss. I realize to some this may sound strange but I had to accept that my previous notion of my ‘normal’ life no longer existed and I needed to grieve the loss of the vision and plans I had for my life. I had to cycle through the stages of loss and grief before I could accept a new life, a blessed life. One that was different from what I led before but no less significant, perhaps filled with even greater blessings, or at least one where I was more attuned to the many blessings in my life.

The Tightrope

Waking up to who you are requires letting go of who you imagine yourself to be. – Alan Watts

So I grieved my loss, jumped out of my hamster wheel and on to the Fibromyalgia tightrope that I am becoming more skilled at walking each day. The thing I have learned about FM is that in terms of activity, if I do too much I will flare with significant pain. If I do too little, I flare into significant pain. I had no choice but to learn how to walk this tightrope if I had any hope of finding my new and blessed life. I had to find the level of activity that keeps me stable – I have pain every day, but on a good day the volume knob is set on low and it is manageable if I remember to stay on the tightrope and not fall off either side. As a side note, you will notice that I use the word activity. This includes any activity I do during the day: cleaning the house, working at my job, playing with my son, going for a walk, riding a bike. For me, words like exercise and workout are associated in my brain with my life pre-FM: running 10 miles, etc. in addition to my regular daily activities. Early in my acceptance of my limitations, I avoided using these words as they created a need in me to ‘workout’ at previous levels and brought back full force the longing for my previous life. Changing my language, and thought process (along with a lot of Bible study and learning to trust and put my faith in God particularly in my suffering) helped me make the adjustment in my thinking and my behavior. Strange perhaps but it worked for me.

Now I plan my days to incorporate an appropriate level of activity in all of it’s forms, so if I have a day where I am doing something with family (say going to the zoo) this is a day I’m not ‘exercising’ as walking around the zoo is my exercise. If I’m doing something with friends that requires more standing, moving, etc. that will impact what kind and amount of additional ‘exercise’ I do that day. By using the generic term activity, it helps me moderate and keeps me from jumping on the hamster wheel again thinking I have to workout every day in addition to any extra things I may have on my plate that day. It helps (but doesn’t eliminate) with my thinking I can do it all!

This balancing act isn’t just for the amount of activity in my day/life, but in all areas of my life. I have found that considering all areas of my life more holistically leads to fewer bad days and more good. I didn’t just need to look at my activity levels, but my life as a whole. I needed a new life plan.

A New Life Plan

All the knowledge in the world is useless if you don’t take the time to apply it. – Nelson Searcy in The Greatness Principle

Adjusting my thinking and behavior has been key to finding balance and living my life versus existing in a constant state of excruciating pain. However, it included more than just looking at my activity levels. I began to see real strides in how I felt each day when I began to look at my life holistically and introduced changes into each part of my life – I think of it not as treatment but as a new life plan. For me, managing the symptoms of Fibromyalgia and my other conditions is like the loose snow at the top of a mountain. If I let one symptom go, or leave one area of my life alone ignoring it, for too long, that snow begins to fall down the mountain. The longer I let it go, the more snow or symptoms join the first until eventually, I’m buried at the bottom of the mountain by the resulting avalanche. And finding my way out from under all that snow or pain, takes time and energy I would rather put into living.

Others that shared their stories had similar experiences. For each of us, taking pharmaceutical medication(s) didn’t seem to get us to the level of functioning we hoped for in our lives. We aren’t looking for that magic pill that would make us ‘normal’ again – although that would be wonderful. We were looking for answers and solutions that would ease the pain but also the multitude of other symptoms. Across the board from those that shared their stories with me, this was found only by making changes in all areas of their lives. This is not easy and I don’t want to make it sound as if it is. It is difficult to change and difficult to overcome the many challenges that Fibromyalgians face. When those who shared their stories with me were asked what some of the worst challenges they faced were, the most common challenges identified were:

·   Inability to perform at an acceptable level at work

·   Inability to do normal everyday tasks

·   Damage to and/or loss of personal relationships

·   Side effects of medications including significant weight gain

·   Lack of support from doctors and the medical community

Others who were able to attend a workshop or clinic on Fibromyalgia or who did in depth research found similar solutions that involved more lifestyle changes with less pharmaceutical intervention when possible. Changes that have made a huge impact in my life and in other Fibromyalgians who have followed this path to a life of blessing and hope are identified and discussed below.

Spirituality and Faith

Those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not faint. – Isaiah 40:31

This is a big one for me. I realize people have different belief systems. I will tell you, in case you haven’t already been able to tell, I am Christian. And maintaining a connection to God each day has been crucial in my personal treatment plan. I have seen God work in tangible ways in my life:

·   When I was pregnant my coworkers donated their time off to me ensuring that I received a full paycheck every month during all the months I was off during the pregnancy and after; that was God’s grace at work.

·   I suffer from fainting spells, and one night in the middle of the night I got up to use the restroom and got dizzy as I walked into the bathroom. The next thing I remember is waking up with my husband standing over me frantic. Two things about this, 1) I didn’t lock the bathroom door as I sometimes did (thank God) and 2) when I fainted I landed with my head in the small space between the toilet and the bathtub. Only God’s grace could have had me land so perfect when I was unconscious so as not to hit my head on either surface causing serious or permanent damage.

·   I was admitted into the hospital after a horrible ER experience. I was in excruciating pain. I cried out to God, but didn’t know what to pray, couldn’t form the words in my mind. But could, and did, continually repeat John 3:16 the only coherent thought I could grab hold of: “For God so loved the world that He gave His one and only son, that whosoever believeth in Him shall have everlasting life.” The shift change in the middle of the night, when the pain was at it’s worse, brought with it an angel. A nurse, who spent time with me, saw my pain and worked with the doctors until they agreed to help provide something to relieve that pain. She quietly checked on me, encouraging me and providing me with strength and encouragement. Those who have been in the hospital and in pain understand that the empathy and love shown by this nurse is not a given, but that night I truly believe she was an answer to a prayer that I couldn’t even utter.

But I called on your name, Lord, from deep within the well, and you heard me! You listened to my pleading; you heard my weeping! Yes, you came at my despairing cry and told me, “Do not fear.” – Lamentations 3:55-57

In a recent flare and subsequent time off from work, I realized something very important. In the stress and complications that had crept into my work and my life I had let my personal time with God go. I had spent no time with him and had been swallowed up by negativity and stress. He got my attention in a big way with a flare-up that had me on medical leave for almost three months and ultimately resignation from that job. Once I opened my heart to him again and began spending time praying and reading his word, I began to see improvement. Yes, I was actively doing the other items in my new life plan or on my treatment checklist, but without this one on one time with God, I firmly believe that progress would have been slower in coming. It is through my time with Him that I was able to truly let go of the negativity, focus on my many blessings, allow healing to take place and allow God to work in my life. It was during this time, that I felt Him urge me to share my story and the stories of others so that we would each know we are not alone, will never be alone in our struggles with FM and that even with FM our lives can be blessed and we can be a blessing to others.

It can be so difficult to get to a place of faith and trust when you are suffering. I remember before I was diagnosed, when it seemed like my life was made up only of suffering and pain, I struggled with understanding how a good God could allow me to continue to suffer (and yes, I was beyond thinking about others who could be suffering in this world – focused solely on my own need). If He had the ability to heal me, why was I continuing to suffer? I remember being so angry when I came across Bible verses about being joyful in my suffering (see Romans 5:3-4 and Peter 1:6-7). I thought you have got to be kidding me! I wanted to focus on verses like Psalm 6:2-3 “Have compassion on me, Lord, for I am weak. Heal me, Lord, for my body is in agony. I am sick at heart. How long, O Lord, until you restore me?” And yet, I wasn’t healed. But God did bring blessings into my life. He brought people into my life to support me, he provided for me to go to Mayo Clinic and access resources that many didn’t have. In so many ways he was with me. As I began to see some relief from the agony and continued in my study and worship, I came to understand that I had to be open to all of the Bible not just the verses that served my purpose. I saw no promise that I wouldn’t suffer, the exact opposite actually and that was hard to accept. But as I continue to open my heart and rely on Him, placing my trust and faith in Him, I see greater blessings in my life. Consider his promises:

·   Your heavenly Father already knows all your needs, and he will give you all you need from day to day if you live for Him and make the Kingdom of God your primary concern. So don’t worry about tomorrow, for tomorrow will bring it’s own worries. Today’s trouble is enough for today. – Matthew 6:32-34

·   And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. – Romans 8:28

·   The suffering you sent was good for me, for it taught me to pay attention to your principles. – Psalm 119:71

God will make all things work for good, even our suffering. As much as we would all love to be healed, God has the bigger picture and is using this time to bring us closer to him or to work on others. Mike Howerton said it perfectly in Glorious Mess when he wrote “Sometimes God is teaching us through a circumstance, and other times he’s using you to teach someone else. He’s working on you, but he’s also working through you.” I don’t know how God is using me but have faith that his purpose is greater than any I would come up with. And I know that I am a better person, a more Christ-like person than before my journey began (though I still have a very long way to go). That is my testimony. What is yours?

My Plan: Part of my new life plan is a focus on the spiritual, renewing attention to my spiritual needs which includes formal services, quiet study, conversations or meditation.

Your Plan: Determine if there is a lack of spiritual focus in your life? If so, create a plan to increase your focus. This can be meeting with others, going to services, reading the Bible, doing a study to help you focus.

Support: To help encourage and support each other a Facebook group has been created for those looking for support from others who find strength, hope and encouragement in and through Christ. Join us in the Christ Centered Encouragement and Support group. (http://on.fb.me/15aOrKT)

Healthy Lifestyle

This is a very broad category that encompasses so many things including:

·   Understanding triggers

·   Moderating activity levels (walking the tightrope)

·   Minimizing or using stress management and relaxation techniques

·   Evaluating eating habits

·   Regularly getting a decent night’s sleep

Understand Your Triggers

I began in my efforts to change my behavior by creating a way to keep track of everything. Seriously, I had a log where every day I tracked everything: everything I ate, all the activity I did (including number of hours worked, family activities, exercises, stretches), relaxation and stress management techniques used (or not), medications/supplements I took and how much of it – everything. This helped me begin to identify where there were patterns. What were the things I was doing that would result in an increase in symptoms? Sometimes there was an identifiable pattern or obvious stressor; sometimes I either couldn’t pinpoint the trigger or I just had a bad day. But doing this helped me to adjust my lifestyle in a way that eliminated those things that increased my symptoms and helped me identify my triggers, those things that when they occurred my symptoms became worse.

It’s extremely important to identify your specific triggers in order to determine what can be done to turn the symptoms around. The FibroCenter website, reports that in a survey conducted by the national Fibromyalgia Association, Fibromyalgians reported that the following factors aggravated their symptoms.

In addition, The Fibromyalgia Network website identifies the items below as common aggravating factors or triggers. Read the Aggravating Factors article for additional information.

·   Weather (especially cold climates and changes in barometric pressure)

·   Cold or drafty environments

·   Hormonal fluctuations

·   Poor quality sleep

·   Stress

·   Depression

·   Anxiety

·   Over exertion

My Plan: Most of the items in the lists above trigger me to some extent; however topping my list of triggers are weather changes/cold weather, lack of/poor quality sleep and stress.

Your Plan: Consider using a journal or other tool to track your days, specifically as they relate to the common triggers. When you have a bad day, consider what has been happening in your life recently and see if you can identify what your top triggers are. Use the information throughout the remainder of this book along with information you have/locate and your support network to develop strategies that may help eliminate the trigger or lessen the impact to you.

Resources/Additional Information: If you want more information from the sites mentioned above you can visit their websites at the links below. I am also happy to share the resources, tools and information I have gathered for those who are interested. Join the Christ Centered Encouragement and Support Facebook Group or message me on my Facebook page and I will direct you to these free tools/resources.

·   FibroCenter: http://www.fibrocenter.com/talking-about-fibromyalgia.aspx

·   Aggravating Factors article on the Fibromyalgia Network website:  http://www.fmnetnews.com/fibro-basics/symptoms/aggravating

Moderating Activity Levels/Exercise

Excellence is doing the best you can with what you’ve been given. – Nelson Searcy in The Greatness Principle

The Fibromyalgia Network reported on 2012 research that looked at different treatment methods and their effectiveness. One of the treatments included was exercise. The study showed that “patients engaged in regular aerobic exercise at least 20 minutes twice per week (44%) had reduced illness impact scores, better physical function, and less fatigue, anxiety and depression. Whereas patients who were less likely to exercise had a greater number of other associated conditions and higher scores for pain, fatigue, and sleep disruption.” The article was clear to point out that “it was difficult to know whether those who exercised were just more able to do so.” However, those who shared their stories with me, the stories I’ve read online as well as my own, indicate that there are definite benefits in maintaining moderate levels of activity and exercise. The article went on to say that “Staying fit is an important goal for maintaining overall health and function for anyone, with fibro or not. Surprisingly, milder movement therapies, such as tai chi and yoga, were not considered forms of exercise in this study” but as forms of alternative therapies.

I’ve already talked about adjusting my mindset regarding exercise and activity levels. For me, and others who shared their stories, some level of exercise has been instrumental in finding the life plan that allows me to live in a place of hope and blessing. I had to find the exercise methods that worked best for me and I had to start slowly. I was so flared up that I had to start with 5 minutes of low-level exercise and gradually increase until I could do 20-30 minutes or more. I tried to walk on the treadmill but had been a runner and couldn’t make myself go at a speed that wouldn’t flare me up. In my head, I had to go a certain speed to be ‘exercising’ – I told you I have to be smacked upside the head sometimes before I get it. I tried elliptical machines, but it was to hard on my body – though I know others who this is the exercise that works best for them. Of everything I tried, walking outside at my own speed and distance appropriate for how I feel that day and riding the recumbent bike we have in our home at the level and distance appropriate for any given day work best. I also saw great benefit from exercising in a therapy pool, but the inconvenience and distance for me to travel to use it ultimately outweighed the benefit. Others have told me they also find great benefit in water exercise as well as exercising at facilities like Curves.

I also continue with the physical therapy stretching exercises that have been provided to me. I complete these multiple times a day, increasing the frequency when I feel a flare coming and during flare ups. In an article published on the Fibromyalgia Network website, it is recommended that Fibromyalgians add at least two rest periods to their day, particularly on bad days or as you feel a flare starting, until you begin to feel better and stretch for five minutes of each day until you are able to be more active (Read the full Fibro Out of Control article).

Beyond that, I was blessed to be in a position and to work for an employer at the time that allowed me to reduce the number of hours I worked a week. As an accommodation, I was also able to get an adjusted work schedule that was very structured. For me this meant working a maximum of six hours a day in a three on, three off, three on schedule. So I would work for three hours, take three hours off to complete my exercise/physical therapy stretches, relaxation exercises and rest period, followed by three more hours of work.  For me, following a structured day (even on the weekends) helps me keep my symptoms in check. I allow for flexibility based on plans we may have, unexpected events and how I’m feeling that day, but the more erratic my schedule the more problems I have controlling my symptoms.

My Plan: Includes maintaining a moderate level of activity, including stretching and exercise in a regular daily structure that includes rest breaks.

Your Plan: Consider where you are now with your activity levels. Think about what is a have to do each day and determine if your activity levels are to high or low and contributing to your daily pain. Evaluate where you can make changes. If adding activity, go slowly until you know the impact it will have on you. Reach out to others for encouragement, support and advice as you make the changes.

Resources/Additional Information: To read the full article mentioned above or for more patient stories, go to the websites below. I am also happy to share the stretching exercises I have been given and worked into my day for those who are interested. Join the Christ Centered Encouragement and Support Facebook Group or message me on my Facebook page and I will direct you to these free tools/resources.

·   Fibromyalgia Treatments: Use and Benefits article (2012 research) on the Fibromyalgia Network website: http://www.fmnetnews.com/latest-news/fibromyalgia-treatments-use-benefits

·   Fibro Out of Control article on the Fibromyalgia Network website: http://www.fmnetnews.com/free-articles/article-samples/out-of-control

·   Fibromyalgian stories

o FibroCenter: http://www.fibrocenter.com/fibromyalgia-stories-tips.aspx#Tom

o National Fibromyalgia Association (including a gentleman able to return to triathlons!): http://fmaware.org/PageServer4311.html?pagename=community_patientStories

Stress and Relaxation Techniques

Everybody needs beauty as well as bread, places to play in and pray in, where nature may heal and give strength to body and soul. - John Muir

Stress, in it’s various forms, is on the list of stressors or triggers for Fibromyalgians. Reducing stress and learning how to relax are important for everyone’s health, but if it is a key trigger for you, as a Fibromyalgian, you need to determine how the stress can be reduced or eliminated or how you can manage that stress with relaxation techniques to keep your fibro symptoms from escalating and becoming debilitating.

Stress is one of my top three triggers. Prior to being diagnosed with Fibromyalgia and being forced to actually look at the amount and impact of stress in my life, I never really gave it a thought. Once I started looking, I realized I don’t deal well with stress. I’m a stuffer. I stuff it. My tendency is to stuff stress down internally and keep it there, continuing to build and build and build, increasing my pain until it is so bad I can barely function. I experimented with things that might help me relieve the stress including different relaxation exercises. I tried things from yoga to tai chi (I know the research mentioned earlier consider this alternative therapy but they were in my ‘to try’ box for reducing stress and anxiety so I’m covering them here) to breathing exercises until I found what worked for me.

While, according to the Fibromyalgia Treatments: Use and Benefits article, reports show that movement therapies such as tai chi and yoga help Fibromyalgians maintain function, they didn’t work for me. Yoga made my pain worse while Tai Chi helped me relax some. For me the breathing exercises seem to work the best while for others I know yoga does wonders. It truly does depend on you, your situation and what you enjoy. In this, we are each unique but can benefit in learning what others have tried so we can find out if it helps our own situation.

I use the relaxation/breathing exercises at bedtime to help me relax and get to sleep or to get back to sleep when I wake up during the night.  I also use these techniques when in pain. When I am in pain, I tend to do everything wrong. I curl up into myself, tense every muscle and rapidly breathe in and out (you know the kind where on TV and in movies they whip out a paper bag to keep you from hyperventilating – yep, that’s me). So my natural inclination is to do everything that is guaranteed to make the pain worse. These are situations where I am working to incorporate the breathing and other relaxation techniques. I will say, in case you haven’t already guessed, using stress management and relaxation techniques are still something I struggle with and when things start becoming hectic at work or as a family we begin to be overscheduled, this is one of the first things to fall off my radar and, ironically, one of the things that has an almost immediate impact to my health and pain levels.

My Plan: I use breathing exercises, Bible study and quiet time, support from family and support groups and sometimes tai chi to help when I am unable to eliminate a particular stress from my life.

Your Plan: Evaluate how you deal with stress. Is it a primary trigger for you, aggravating your fibro symptoms? Come up with some techniques you can try to reduce the stress and relax. Give them a try and determine which techniques work best for you and how and when you can incorporate them into your new life plan.

Resources/Additional Information: To read the full article mentioned above or for more patient stories, go to the websites below.

·         Fibromyalgia Treatments: Use and Benefits article (2012 research) on the Fibromyalgia Network website: http://www.fmnetnews.com/latest-news/fibromyalgia-treatments-use-benefits

·         Fibro Out of Control article on the Fibromyalgia Network website: http://www.fmnetnews.com/free-articles/article-samples/out-of-control

·         Fibromyalgian stories at FibroCenter: http://www.fibrocenter.com/fibromyalgia-stories-tips.aspx#Tom

Diet

Some people are willing to pay the price and it's the same with staying healthy or eating healthy. There's some discipline involved. There's some sacrifices. - Mike Ditka

What we put into our bodies impacts each of us. In Fibromyalgians, with our overactive senses and irregularities in the production and absorption of a variety of the body’s natural substances, what we put into our body becomes even more important. This includes the food we eat and beverages we drink. It also includes medications and supplements, which will be covered in the Traditional and Alternative Treatments section. The Fibro Out of Control article offers a couple of diet tips to Fibromyalgians:

·   Eat small amounts of protein throughout the day to provide energy and reduce sugar cravings

·   Minimize caffeine and foods loaded with processed sugar

·   Avoid Aspartame (Equal, NutraSweet, and many diet drinks)

In addition, to some of these general diet tips, I had a hard time truly identifying if there were foods that triggered any of my symptoms. So I began by adjusting to a healthier and more balanced diet. I knew I didn’t have food allergies, but I didn’t know if I was sensitive to anything that might be aggravating my symptoms, so I completed a cleanse (oh joy and fun) at the same time I underwent food sensitivity testing to determine for sure whether or not I was eating items that could be impacting my health. As it turns out, I have sensitivities to food items containing gluten and dairy – of course these are two of my very favorite things so I ate a lot of both! In the past, I had tried cutting out each of these, but never both at the same time which would be why I didn’t pick up on this pattern. Since I had completed the cleanse and was starting fresh, I cut these food items out of my diet. I have seen a definite improvement in some of my symptoms that makes this change well worth the sacrifice. In addition, in 2013 I cut aspartame out of my diet. It took a while for me to give this up because I was being obstinate – I didn’t want to give up that one more thing. Once I got over my mental block and mini-tantrum, I cut aspartame out of my diet and have seen significant improvement in how I feel and my productivity levels. I’ve known I should at least try to give this up for a very long time, but I had to get out of my own way on this one and I’m thankful I finally did!

There are many theories on different dietary items that may make a difference in severity of symptoms. You can research this online, find groups and pages on Facebook and gather opinions and advice from live and online support groups on other dietary tips that may help you. Some of this will be specific and unique to you, for example food sensitivities, and will require testing or trial and error on your part to determine what foods may aggravate your symptoms.

My Plan: I eliminated gluten and dairy from my diet, eat more balanced meals, eat small amounts of protein throughout the day and reduce the amount of caffeine I drink.

Your Plan: Consider your symptoms and what you may have eaten in the 48 hours prior to the aggravation of your symptoms. Use trial and error or have testing done to determine if there are links between items you are eating and the escalation of your symptoms. Do some research on diet tips and talk to others for ideas of items that may be causing problems and for support and encouragement as you make changes to your diet.  Support groups, either local or online, are great resources and places to get information and tips. Find links to some support groups in the Relationships section

Resources/Additional Information: To read the full article mentioned above, go to the website below.

·   Fibro Out of Control article on the Fibromyalgia Network website: http://www.fmnetnews.com/free-articles/article-samples/out-of-control

Sleep

The best cure for insomnia is to get a lot of sleep. - W. C. Fields

Source after source recommends getting a good night’s sleep. Easier said than done. For me and almost every other Fibromyalgian I know, this one is a huge factor. Poor sleep cycles will flare up almost every symptom I have which means I had to find a way to improve my sleep. I don’t sleep or find it very difficult to sleep no matter how exhausted my mind and body may be. I use the relaxation techniques to help and other good sleep hygiene practices and still struggle. I have found some all-natural supplements that truly help me sleep on a more regular basis. When I begin to go too long with no sleep, I work with my doctor on prescription medication options that can help me sleep and ‘reboot’ my system. While it is not ideal, for me it seems to be a necessary evil, at least occasionally, as the longer I go without sleep the more everything else flares-up. If it’s not caught early in the cycle, I will soon be buried under that avalanche mentioned earlier.

You will find information and links regarding prescription medications, all natural supplements and other alternative treatments that may assist with your sleep as well as other symptoms in the Traditional and Alternative Therapies section.

My Plan: I use relaxation techniques, good sleep hygiene techniques, supplements and when necessary prescription sleep medications.

Your Plan: Determine what your sleep issue is – too much or too little. Work with your doctor and support network to determine options and alternatives that may help you improve your sleep patterns and cycles.

Resources/Additional Information:  Locate a local or online support group using the links below. Join the Christ Centered Encouragement Facebook group for support and ideas as well as additional information on good sleep hygiene or contact me and I will direct you when possible to resources.

·         National Fibromyalgia Association - http://fmaware.org/site/PageServer.html (find local support groups)

Please note:  Most of the following are closed groups that you must request to join. Select the join button for your request to be reviewed. Some of the Facebook groups may require a group member invite you. Please reach out to me if you are unable to locate a group you are interested in joining and I will help where possible.

·         Christ Centered Encouragement and Support Facebook group – http://on.fb.me/15aOrKT

·         Fibromyalgia Network Facebook Page - https://www.facebook.com/home.php?ref=tn_tnmn#!/FibroNetwork

·         National Fibromyalgia & Chronic Pain Facebook Page: https://www.facebook.com/shannon.sonneveldt?ref=tn_tnmn#!/NFMCPA

·         Thriving Not Just Surviving – https://www.facebook.com/#!/groups/292361507558318/

·         United in Understanding Fibromyalgia, Lupus and RA - https://www.facebook.com/#!/groups/309177875865424/

·         Fibromyalgia: Raising Awareness One Day at a Time - https://www.facebook.com/home.php?ref=tn_tnmn#!/groups/265283016921807/

·         Paying it Forward - https://www.facebook.com/groups/145734398938109/

Traditional and Alternative Treatments

A heart at peace gives life to the body. – Proverbs 14:30

The majority of Fibromyalgians who shared their stories, use a combination of traditional and alternative treatment methods, myself included. The Fibromyalgia Treatments: Use & Benefits article presented on the Fibromyalgia Network website stated that “only 35% of Fibromyalgians were taking medications and that perhaps the low usage of these meds was due to their poor performance. The only benefit obtained from them was a slight improvement in physical function, but they did not reduce the key symptoms of pain, fatigue, or disrupted sleep.” In addition, the article states, “psychological approaches to pain management had been tried by 30% of the 150 patients, but did not produce improvements. Complementary or alternative therapies were being used regularly at least once a month for the past three months by almost half of the patients in the study which included naturopathy, osteopathy, physical therapy, massage, acupuncture, chiropractic treatment, and movement therapies such as tai chi. These treatments provided a significant decrease in anxiety.”

I, like many Fibromyalgians, have been on and off many medications over the years. I am not a doctor and different things work for different people and their situations so I will not make medication or supplement recommendations or go into different prescription medications available for treating Fibromyalgia or detail the large number of supplements that could be used to treat different symptoms. However, I will say I have been blessed to discover a combination of prescription medication and supplements that help me tremendously based on my needs (as determined by testing hormone, cortisol and other levels). There are many resources that identify different supplements that may help with specific symptoms.  Unless I am in a major flare-up, I rely much more on all-natural supplements than prescription medication now and have found more relief with fewer side effects.

In the Fibro Out-of-Control article by the Fibromyalgia Network, the following tests were identified as ones that may help determine the best treatment methods as you begin to flare-up. This is not an all-inclusive list but provides a place to start. The list includes:

·   Vitamins B1 and B6 blood levels

·   Carnitine (total and free blood levels)

·   Thyroid function: T3, T4 and, auto-antibodies (especially if the thyroid gland in the neck is tender or enlarged)

·   Adrenal function: measure saliva cortisol throughout the day

·   Lyme disease antibodies (especially with a history of a skin bite)

·   Look for infections: gums/teeth and other sources

I still take one prescription medication but have been able to replace the other medications with supplements – again this adjusts if I’m having a flare-up but as I recover from flare-ups, I am able to back off the prescription medications. The supplements have also helped me to sleep better more regularly without the groggy feeling that sleeping medications, both over the counter and prescription, tend to leave me with. I have found benefits in this approach though it may not be for everyone and you should consult with medical professionals before starting or stopping any medication regiment.

Additional alternative therapies that some Fibromyalgians have found helpful include acupuncture, physical therapy, massage, chiropractic services, warm water therapy, improvement of lower body function (perhaps with a walking program) and movement therapy. When money and time allows, I schedule a massage. This was something I loved prior to discovering I was a Fibromyalgian and didn’t think I would ever be able to enjoy it again as just the thought of someone touching me much less pushing into my muscles and nerves made me tense with pain. But I found someone who has worked with many Fibromyalgians and uses techniques that relax and provide relief without causing pain. If you can find someone who understands FM and the best way to work with you, I highly recommend it! I also use warm/hot water baths and showers to reduce stiffness and achiness. This is another common method for relief I have found across the stories shared with me.

My Plan: I use a combination of traditional and alternative therapies in my life plan. This includes prescription medications, supplements, warm water therapy and massage.

Your Plan: Work with your doctor, reach out to individuals in a support network, and/or do research on supplements that might work to treat your symptoms. Consider alternative therapies such as massage, movement therapies, acupuncture and more. Consider all your options and create a plan that works for you and work it into your life plan.

Resources/Additional Information:  Read the entire article referenced above as well as recent research published regarding the benefits of CoQ10 for treating certain Fibromyalgia symptoms and a list of different treatment options by going to the websites identified below.

·   Fibromyalgia Treatments: Use and Benefits article (2012 research) on the Fibromyalgia Network website - http://www.fmnetnews.com/latest-news/fibromyalgia-treatments-use-benefits

·   Fibro Out-of-Control article on the Fibromyalgia Network website - http://www.fmnetnews.com/free-articles/article-samples/out-of-control

·   CoQ10 may help treat Fibromyalgia symptoms: Enzyme abnormality resulting in a constant state of exhaustion in Fibromyalgia patients - http://www.fmnetnews.com/latest-news/no-power-to-your-punch

·   End Fatigue website, list of nutritional treatments, natural treatments, prescriptions medications and more for different symptoms associated with Fibromyalgia: http://www.endfatigue.com/tools-support/view-treatments.html

Relationships

Let go and let God. – Unknown

Admitting that I’m not God means I know I am powerless to change my past, control other people and to cope with my baggage. – Pastor Danny Crawford, Faith Church

Many Fibromyalgians, myself included, experience damaged, deteriorating or the end of relationships as a result of their condition. This can be due to the limitations that Fibromyalgians experience as a result of the condition, negative responses or disbelief of those close to them, believing that the Fibromyalgian is a hypochondriac, lazy or an attention seeker. Just like you will find doctors who believe there is nothing wrong with you and that it’s all in your head, you will have family and friends who don’t believe there is anything wrong with you or, more often, who don’t understand what’s wrong and why you can’t do the things you have always done. Family and friends who empathize as you are being diagnosed, who celebrate with you when you finally get the diagnosis may have an expiration date on their empathy. Not necessarily because they don’t care about you, but because they don’t or can’t fully understand what is wrong and the drastic impact FM will have on how you live your life. They may be unsure how they fit into your new life. If you have family or friends that struggle to understand what you are going through check out Love Letter to Normals by Claudia Marek and how she explained to family and friends what it’s like to have Fibromyalgia.

For all these reasons as well as the pain and ongoing symptoms, it becomes very easy for us to isolate ourselves from others. I have to say that I am very guilty of this. I have a tendency to hole up by myself when I am hurting or not feeling well. I don’t reach out to or talk to friends and family when things begin to flare-up. For a long time I was afraid to make any plans because what if I had a flare and had to cancel (repeatedly), what if I got to the outing or event and started hurting and needed to leave. I had a million excuses for why I couldn’t go out, why I couldn’t stay in touch and truth be told I still do. I fight this all the time. It’s especially easy for me because I work out of my home – great for helping to moderate my activity, not so great for maintaining relationships. It’s so much easier to just curl up and not risk disappointing anyone or having to explain what’s wrong. It’s easier. It’s not healthier. The more time alone, without support, without the interaction of others the more apt I am to focus on everything that is wrong with me instead of everything that is right. The more time I spend alone the more prone I am to falling into a depression as a result of the daily pain, anxiety and isolation. An example of how I still struggle with this, I recently suffered a major flare up resulting in a medical leave of absence from work. I was off work for over a month before anyone in my family knew that there was a problem or that I was having problems. I isolated myself. Now, not completely because over the last several years, God has blessed me with friends that support me through anything and everything and who can tell from just the tone of my voice when they call to check in (as they often do) that there is a problem. They knew immediately I was struggling and supported me in every way they could during my nearly 3 months of medical leave. So I thank God that he put them in my life, that they check on me and keep me from isolating myself and focusing on me instead of others and living life – which doesn’t stop just because I’m flaring-up. It’s still hard for me to remember to reach out for help and support, but I’m praying that I’m improving and that God will continue to put such wonderful friends in my life and will continue to build my support network. This includes online support networks that I recently stumbled upon and have found to be a wonderful place to find and give support to others who are going through the same or similar struggles.

A strong support network is so important. There are days I just need a hug, a smile, or someone to understand why I cry or feel like crying. Family and friends can provide some of this. Earlier I stated that one of the challenges is that as Fibromyalgians we have no visible disability that people can identify and empathize with. We look fine, so we should be fine. However, this isn’t completely true. I have found that the family and friends that offer true support and empathy can tell when I’m having a bad day. They hear it in my voice, see it in my eyes and the way I move a little slower or a little stiffer, alerting them and they offer support as appropriate. These are moments when in the midst of the pain, I find joy in the blessing of such wonderful family and friends. For these individuals I have found them more than willing to take their cue from me. I’m a toucher, I like to hug and touch. This is an aspect of FM that is difficult for me as there are many days where a simple touch or a hug is extremely painful. My family and friends make the openings for me and follow my lead based on whether or not to hug and if so how gently. Touch brings comfort, peace and love to my heart and these amazing people allow me to hold on to this gift by adjusting our interactions to meet my need, I thank God everyday for this gift.

As much as they support me, most of my family and friends can’t completely relate to what I feel or am experiencing. That doesn’t mean I dismiss them from my life. I have found if I continue to try and educate, in small doses, family and friends who want to offer support gradually understand how FM impacts my daily living and the impacts to our relationship and interactions. I don’t have to, nor do they want to be, beat over the head with how I feel everyday, what hurts and how much.  There is pain everyday, but it is not the focus of everyday. The ‘normal’ day is manageable; the days that are worse I adjust my plans and interaction to accommodate and keep from having major flares as much as possible. This includes telling those closest to me what I need that day and reaching out to those who can offer encouragement, support and advice because they have been there.

For the family and friends who choose to be a part of your new life and who want to support you below are some ways you can help:

·   Reinforce the positive lifestyle changes that are being made.

·   Try to avoid constantly asking how the Fibromyalgian is feeling. Fibromyalgia is a chronic condition bringing pain and challenges to every day. Rather than always focusing conversation on physical symptoms, encourage or begin discussions about activities and feelings.

·   Be available and listen when the Fibromyalgian needs to talk or explain what is going on. Understand that not only is the pain very real, but the sense of loss is as well for all the things that FM has taken away; help the Fibromyalgian focus on the positive changes and blessings that they still have without minimizing the pain or illness they are suffering.

·   Find activities you can do together and don’t allow the Fibromyalgian to isolate themselves. Time spent with family and friends could help serve as a distraction from the pain and other symptoms.

·   Don’t treat Fibromyalgians as invalids. They have a chronic illness but should be allowed their independence. What they need from you is your support and understanding both with the illness and the positive lifestyle changes they are making to better manage their health.

As much as the support of family and friends is important and makes a huge difference in my life, there is a level of support that I can only get from other Fibromyalgians. This is an invaluable support network. They know how I feel and what I am experiencing. I strongly encourage all Fibromyalgians to connect with a Fibromyalgia support group or network of some kind. If you have family or friends who also have FM you have a built in network of support.  If you don’t already know people with Fibromyalgia, you can look for a local support group (see the links in the resources section for sites that may help locate a local support group). If that doesn’t work for you, there are also some online support groups that work to help each other through both the good days and bad, offering encouragement, empathy and new solutions you may not have tried (you will find links to a couple of these groups in the resources section).

Resources/Additional Information

The resources identified below are to help you find support and resources from others who understand your struggles and pain. You will also find links and information about resources that can assist you in understanding Fibromyalgia, stay up on the latest research and advancement and help you build your new life plan.

·         Check out the other Fibromyalgia Facebook support groups (for some of these groups you have to specifically be invited to join– if you are unable to find a group you are interested in, reach out to me and I will assist where possible). Many of them have documents and files posted with additional information and resources for its members.

·   Christ Centered Encouragement and Support Facebook group – http://on.fb.me/15aOrKT

·   Fibromyalgia Network Facebook Page - https://www.facebook.com/home.php?ref=tn_tnmn#!/FibroNetwork

·   National Fibromyalgia & Chronic Pain Facebook Page: https://www.facebook.com/shannon.sonneveldt?ref=tn_tnmn#!/NFMCPA

·   Thriving Not Just Surviving – https://www.facebook.com/#!/groups/292361507558318/

·   United in Understanding Fibromyalgia, Lupus and RA - https://www.facebook.com/#!/groups/309177875865424/

·   Fibromyalgia: Raising Awareness One Day at a Time - https://www.facebook.com/home.php?ref=tn_tnmn#!/groups/265283016921807/

·   Paying it Forward - https://www.facebook.com/groups/145734398938109/

·         Love Letter to Normals: A way to explain to family and friends what it’s like to have Fibromyalgia - http://www.fibromyalgiatreatment.com/letter_to_normals.htm

·         FibroGuide - http://www.fibroguide.com/pages/index.aspx

A self-management program for people living with Fibromyalgia, this website provides an interactive guide that helps you understand, track and manage your Fibromyalgia symptoms.

·         Fibromyalgia Network - http://www.fmnetnews.com/

This network is a great resource for information and management resources for Fibromyalgia sufferers including breaking news, articles and more. This network also has a very active Facebook page offering you a chance to connect with others with FM. You can ask questions, share your experiences, be supported and support others.

·         FibroCenter -  http://www.fibrocenter.com/index.aspx

This site provides information about understanding your pain symptoms, facts about FM, getting a diagnosis and living with FM. You will also find patient stories on this site and the journey and testimonies of other FM patients.

·   National Fibromyalgia & Chronic Pain Association: http://www.fmcpaware.org/

This is a nonprofit organization providing a global community of support, advocacy, education and research for those suffering from Fibromyalgia and Chronic Pain.

·   National Fibromyalgia Association - http://fmaware.org/site/PageServer.html

This is the site for the National Fibromyalgia Association and includes research and facts about FM as well as information about communities and support groups.

·   Mayo Clinic Fibromyalgia - http://www.mayoclinic.com/health/fibromyalgia/DS00079

Mayo Clink offers a Fibromyalgia Clinic for those they diagnose with FM. This site provides information on symptoms, causes, risk factors, complications, tests and diagnosis, treatments and drugs, lifestyle and home remedies, alternative medicine and coping and support.

·   WebMD Fibromyalgia Health Center - http://www.webmd.com/fibromyalgia/default.htm

At WebMD’s Fibromyalgia’s Health Center you will find information on FM overview and facts, symptoms and types, diagnosis and tests, treatment and care, home remedies and finding help.

Living a Blessed Life and Blessing Others

It’s okay to not be okay, but it’s not okay to stay there. – Pastor Danny Crawford, Faith Church

This quote is one of my favorites, one that I’ve heard Pastor Danny use often and one that truly touched me. I have and am suffering, so are millions of other Fibromyalgians. I, we, can choose to stay in place of suffering, complaining about the unfairness of it all, becoming increasingly bitter and angry at our circumstances and those who have discounted and discarded us or we can choose to live a life of blessing and hope. Is it that easy? Yes and no. It’s a choice and it was easy for me to make the choice that this is what I wanted, blessing and hope; however, it wasn’t so easy to get there. It was a hard path to travel, but one I found I didn’t have to travel alone. I chose to fight to attain a life filled with blessing and the hope, the promise of something better. Some days it’s easier than others to live in this space and on the days it’s more difficult I need the support of family, friends, support networks and, most importantly, Jesus Christ my Lord and Savior.

Many other Fibromyalgians have made the same choice. Are we cured? No. Are we happy and blessed? Yes. Unbelievably, you will even find stories of Fibromyalgians online who make the radical statement that their life is better now than ever, different but better. Talk about a blessing! I could make this statement too. How? The following steps helped me get to a place of blessing and hope:

·   Through my struggles, I have come closer to the Lord.

By learning to obey Him, we find ourselves willing and able to bless others from a place of authentic concern and love. – Nelson Searcy in The Greatness Principle

·   I learned to focus on others rather than myself and my pain (though I can always do better at this) and help in any way I could.

Even when you can’t act, pray. Prayers truly make a difference. – Nelson Searcy in The Greatness Principle

·   I developed empathy for others suffering, regardless of the cause of the suffering, and ceased my tendency to make judgments about others on appearance (God had a lot of work to do on me and I am blessed to have learned at least some of my many lessons, it will be interesting to see what else He needs/wants me to learn).

The question “What is God teaching me through this?” might be the most important question we can ever ask. – Mike Howerton in Glorious Mess

·   I have learned to focus on my priorities in this life. By having to slow down and evaluate what I can and cannot do, I have been forced to assess and choose what is important enough for me to spend my limited energy on resulting in better relationships with my husband, my son and other family and friends.

Not all of us can do great things. But we can do small things with great love. – Mother Teresa

·   I have learned to forgive those who discounted or discarded me as a result of my illness. Their opinion is not my problem. My forgiveness of them didn’t change their opinions or attitudes but brought me peace and an understanding that their issues are not my issues and not worth stressing about or wasting my energy on. Through true forgiveness and education of those that truly wanted to understand, I was able to heal relationships. Healing these relationships helps me not only spiritually, but physically as well since this stress only aggravated my symptoms. Removing that bitterness and negativity from my life and spirit, lifted me up and released me.

Unforgiveness has a devastating way of eliminating new possibilities. – Brian Zahnd in Unconditional?: The call of Jesus to radical forgiveness

Jesus said, "Father, forgive them, for they do not know what they are doing." – Luke 23:34

An eye for an eye makes the whole world blind. – Mahatma Gandhi

Other’s who shared their stories found similar blessings through or as a result of their Fibromyalgia. The most common included:

·   Discovered an understanding by family of what FM involves

·   Found support and patience in my family and friends

·   Took the opportunity to share and teach others about Fibromyalgia – spreading the awareness and understanding

·   Developed empathy for others - understanding what it is like to live with undiagnosed pain and being misunderstood and those unable to perform simple tasks

·   Found a desire to help others who are suffering and be there to support them

I am only one; but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do. – Helen Keller

It’s important to find the balance in treatment or the life plan that works for you and your life while finding blessings in each day, even the hard ones. They are there, though sometimes it can be difficult to see them through the pain. I found myself journaling (admittedly sporadically depending on how I felt that day), but as I look back I can see the blessings in each day that I had forgotten or would normally overlook. A beautiful day, an unexpected call or support from a friend, time spent with my son or husband that brought me peace in the pain, all blessings that sustained me for that day and brought hope and love to my heart. It’s easy to forget the blessings we receive, but reading back through my journals it becomes apparent that God was always with me and blessed me repeatedly in a variety of ways and I am truly thankful not only for the blessings but also for the ability to look back and clearly see His hand in my life.

Small things done in great love will change the world. – Steve Sjogren

How wonderful is it that nobody need wait a single moment before starting to improve the world. – Anne Frank

As you begin to see the blessings in your life, find a way to be a blessing to others. God blesses those who bless others. Take the focus from yourself; use your experiences to help others or to simply offer encouragement. It may very well be the support you offer to a fellow Fibromyalgian. You will probably never know the significant impact you can have on others by sharing your story, listening to someone else’s, sharing tips and strategies about what is working for you or just encouraging someone through a bad day or rough patch. It means something and blesses someone’s life when you are able to do these things. Don’t ever underestimate what you can offer to others.

Sometimes an encouraging word may be all you have to offer someone in need. Don’t underestimate the power of this blessing. The right words spoken at the right time can bring peace and comfort in many difficult situations. – Nelson Searcy in The Greatness Principle

Tips from Fellow Fibromyalgians

Never give in – never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honor and good sense. – Winston Churchill

Hopefully, through the stories and experiences of other Fibromyalgians you are able to see that you are not alone in your struggle. There are millions of Fibromyalgians who have similar challenges to what you have faced or will face. Gain strength from their struggles; learn from the tragedies and triumphs of others. Below are tips for building a life of blessing and hope from fellow Fibromyalgians.

1.       Walk the tightrope. Be sure you are active, that you are exercising or finding a balance in your activity. Find the types and levels of exercise or activity that works best for you and don’t push yourself to match someone else’s workout or exercise routine. If you haven’t been active or exercised, be sure to start slowly, this may mean start with a 5 minute walk and increase until you can go farther or faster.

2.       Find a supportive and empathetic medical provider. Find a doctor that will work with you to find a balanced treatment plan that works to get your symptoms under control and manageable. If this isn’t possible for insurance, financial or other reasons, find a good support network of those who understand what you are going through and who can help you build a life plan that works for you.

3.       Learn good time management and prioritization skills. Know that you can’t do it all, as much as you would like to or wish to. Determine your priorities. What are the must do’s, good to do’s and just want to do’s for each day. With each of those lists, what takes first priority, then second, etc. Prioritize and then manage based on the day, be prepared to adjust plans for bad days.

4.       Remember you will have bad days so plan accordingly. Have a backup plan in place for those days that you wake up and can tell right off that it’s a bad FM day. What can you adjust to get in more stretches, a massage, relaxation exercises, or something else that helps ease the pain for you? What can be put off until another day?

5.       Get off the hamster wheel. Realize that your life has changed from what it once was. Mourn your loss and look at building your new life, perhaps into a better life, where you focus on those things truly important to you. Use your precious supply of energy on those things that touch your heart the most and that will mean the most to you and others. Find ways to make your life a blessing to others and in doing so you will create a blessed life for yourself.

6.       Learn to let go and relax. For those of us who always thought we could do it all and are now stressed because our bodies won’t let us. Learn what stress management and relaxation techniques work for you to help let go of old expectations when they creep up and life’s stresses that seem to be a part of everyday life.

7.       Start your day with a hot/warm shower or bath to loosen sore muscles and ease the aches. Take more than one a day on bad days as a natural way to help ease pain.

8.       Educate yourself on the condition, staying up on recent research and advancements and possible alternative treatments that may work to help provide relief from some of your symptoms.

9.       Build a support network of family, friends and/or other Fibromyalgians. Explore the support options available in your life, locally and online. Support groups are not one size fits all, so try different groups until you find the one that fits you.

10.   Don’t assume every problem is FM related. Know that you can get infections or develop other medical problems that are not related to your Fibromyalgia. When new symptoms present themselves, consult a medical professional to ensure there isn’t something else going on that can and should be treated.

11.   Plan your day and your activities so after a strenuous or stressful activity you are encouraged, uplifted or rested as a result of the next one. Build these positive and restful activities in throughout your day to help minimize stress and aggravation of your Fibromyalgia symptoms.

12.   If you suffer from sensitive, stiff or painful feet, wear shoes that provide additional cushion or support to minimize the effects of this symptom throughout the day.

13.    Take frequent breaks throughout the day to rest, stretch, and/or change positions.

14.   Find ways to lighten or ease everyday tasks. For example,

·         If you carry heavy items try using a cart to make the task easier. When you have to carry heavy items, use a fold up luggage cart to make your load lighter.

·         If you regularly carry a purse, think of minimizing the amount you carry in it to lighten the load or switching to a fanny pack or other method of carrying the items that may be easier on your body.

·         If you must complete housework, schedule it so you are not doing all tasks on the same day. Perhaps dust one day, vacuum another or split the work up and do one room each day.

15.   If weather changes are one of your triggers, consider planning indoor activities on those days to avoid having to go out. If you must go out, find ways to minimize the impact – for example, if it’s the cold that poses the problem, wear additional layers to help keep you warmer.

16.   Organize your home to make things easier for you based on your triggers. This may include organizing your home so frequently used items are within easy reach or keeping closets and drawers cleaned out and organized to avoid extra time and exertion searching for items.

Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand. – Isaiah 41:10

Resources/Additional Information

Find additional tips, stories and information at the websites below as well as with a local or online support group.

·   100 Tips for coping with Fibromyalgia & Insomnia - http://www.fms-help.com/tips.htm

·   Patient stories and tips -

o FibroCenter: http://www.fibrocenter.com/fibromyalgia-stories-tips.aspx#Tom

o National Fibromyalgia Association (including a gentleman able to return to triathlons!): http://fmaware.org/PageServer4311.html?pagename=community_patientStories

·   Fibromyalgia Resource Information - http://www.fibrofactpage.com/fibromyalgia-websites.html

Thank You

I hope you enjoyed Fibromyalgia: Living a Life of Blessing and Hope. If you have a moment, please help others enjoy this book too.

Lend it. This e-book is lending-enabled, so please, share it with a friend.

Review it. Help other readers choose what to read – tell them why you liked this book.

For additional discussion and support visit me at my website, on Facebook or email me.

Email at ShannonSonneveldt@gmail.com

Website: http://www.shannonsonneveldt.com

Facebook: https://www.facebook.com/ShannonSonneveldtAuthor/

Christ Centered Encouragement and Support Facebook Group: http://on.fb.me/15aOrKT

About the Author

I suffered from symptoms that went undiagnosed or misdiagnosed for years. After years of suffering and searching for answers, I was finally diagnosed with Fibromyalgia along with other associated conditions. With support from others, trial and error and a lot of prayer and faith in God, I was able to create a new life plan. This plan is a well-rounded, holistic plan that brought changes to almost every area of my life. With these changes, I feel better and live a more active and joyous life. My Fibromyalgia journey has blessed me with many new friends with their own Fibromyalgia journey and has strengthened my faith and trust in Christ. I am not cured, but have found a way to lead a balanced and blessed life filled with hope. I still need the support of family, friends and fellow Fibromyalgians for encouragement and advice, but have hope for what each new day will bring. I pray that every Fibromyalgian finds the support and encouragement they need to create their new life plan, a life filled with blessing and hope.

I live with my husband, son and two Scottie pups in Kansas. I love photography, traveling with family and friends – and reading and writing of course!

She love to connect with readers and other Fibromyalgians, so be sure to check out my website and join me on Facebook!

Contact me through email: ShannonSonneveldt@gmail.com

Website: http://www.ShannonSonneveldt.com

Facebook: https://www.facebook.com/ShannonSonneveldtAuthor/

Christ Centered Encouragement and Support Group: http://on.fb.me/15aOrKT

GoodReads: http://www.goodreads.com/shannonsonneveldt

Additional Books by Shannon Sonneveldt

I hope you will find further inspiration, support and humor in the books listed below.

A complete list of writings can be found on my website (http://www.ShannonSonneveldt.com).

Experience Life in Poetry: Random Life Observations, Parenthood and Growing-up (Volume 1)

This is volume one in the Experience Life in Poetry series, a series that reflects observations and emotions at any given moment in life from childhood to present time. Think of moments that stood out in time for you. Moments that made you laugh, made you cry, made you think or made you sigh. Hopefully, you will experience these same emotions through the poems in the book whether it’s wonder, laughter, understanding or something all together different. I hope it makes you think or makes you feel.

This volume contains more than 80 poems organized in the following topics:

·   Random Life Observations – these include random thoughts and observations experienced in life such as fishing (from the fish’s point of view), having a cold, nature, making memories, and more

·   Parenthood From the Parent’s Perspective – this section contains expressions of joys, struggles, frustrations and fears felt by parents everywhere

·   Growing-up From the Child’s Perspective – these include reflections on parents, peer pressure, high expectations, first loves and more

Enjoy your journey through life in poetry.

Available in paperback and Kindle formats at Amazon.com: http://www.amazon.com/dp/B00BMRT5SI

Experience Life in Poetry: Family, Friends and Romantic Relationships (Volume 2)

This is volume two in the Experience Life in Poetry series, a series that reflects observations and emotions at any given moment in life from childhood to present time. Think of moments that stood out in time for you. Moments that made you laugh, made you cry, made you think or made you sigh. Hopefully, you will experience these same emotions through the poems in the book whether it’s wonder, laughter, understanding or something altogether different. I hope it makes you think or makes you feel.

This volume contains approximately 90 poems organized in the following topics:

·   Family – these include thoughts, feelings and experiences with family members from parents (including step-parents), siblings, grandparents, and more

·   Friendship – these include reflections of what good friends mean to us throughout our life

·   Romantic Relationships – this section contains expressions of joys, struggles, frustrations and fears experienced as people enter into romantic relationships from the dream to the reality of forever or goodbye

Enjoy your journey through life in poetry.

Available in paperback and Kindle formats at Amazon.com: http://www.amazon.com/dp/B00BTHSAW8

Experience Life in Poetry: Seeking, Accepting and Following God (Volume 3)

This is volume three in the Experience Life in Poetry series, a series that reflects observations and emotions at any given moment in life. This volume reflects the ups and downs, fear and hope that come during the journey of seeking, accepting and following God.

The poems are a mixture of questions, challenges, insight and faith, a journey from seeking a relationship with Him to a life following Him. Everyone’s belief journey is different. Every journey has its ups and downs, its joys and missteps.

This volume contains poems, quotes and verses that you may relate to in your own journey towards belief.

Enjoy your journey through life in poetry!

Available in paperback and Kindle formats at Amazon.com:  http://www.amazon.com/dp/B00HP7JRI2

Table of Contents

Introduction

Fibromyalgia 101

Symptoms

Research

Resources/Additional Information

How It All Starts: Getting Hit by the Fibro Freight Train

Diagnosis Journey: The Revolving Door of Doctors

Resources

Moving Forward: From the Hamster Wheel to The Tight Rope

The Hamster Wheel

The Tightrope

A New Life Plan

Spirituality and Faith

Healthy Lifestyle

Understand Your Triggers

Moderating Activity Levels/Exercise

Stress and Relaxation Techniques

Diet

Sleep

Traditional and Alternative Treatments

Relationships

Living a Blessed Life and Blessing Others

Tips from Fellow Fibromyalgians

Thank You

About the Author

Additional Books by Shannon Sonneveldt

Experience Life in Poetry: Random Life Observations, Parenthood and Growing-up (Volume 1)

Experience Life in Poetry: Family, Friends and Romantic Relationships (Volume 2)

Experience Life in Poetry: Seeking, Accepting and Following God (Volume 3)

Fibro 101

Traditional and Alternative Treatments

Table of Contents

Introduction

Fibromyalgia 101

Symptoms

Research

Resources/Additional Information

How It All Starts: Getting Hit by the Fibro Freight Train

Diagnosis Journey: The Revolving Door of Doctors

Resources

Moving Forward: From the Hamster Wheel to The Tight Rope

The Hamster Wheel

The Tightrope

A New Life Plan

Spirituality and Faith

Healthy Lifestyle

Understand Your Triggers

Moderating Activity Levels/Exercise

Stress and Relaxation Techniques

Diet

Sleep

Traditional and Alternative Treatments

Relationships

Living a Blessed Life and Blessing Others

Tips from Fellow Fibromyalgians

Thank You

About the Author

Additional Books by Shannon Sonneveldt

Experience Life in Poetry: Random Life Observations, Parenthood and Growing-up (Volume 1)

Experience Life in Poetry: Family, Friends and Romantic Relationships (Volume 2)

Experience Life in Poetry: Seeking, Accepting and Following God (Volume 3)

Fibro 101

Traditional and Alternative Treatments