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December 2014
Volume 3: Issue 4
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What I have to Say? By: Melissa Swanson
email: fibromodem@fibromodem.com blog: fibromodem.com Facebook page: www.facebook.com/FMawareness Twitter: @Fibromodem Shop at: cafepress.com/fibromodem
I want to offer my thanks to Simone for giving me the opportunity to edit the last 2 issues of Living Well. It has been a wonderful experience. I want to thank all of the wonderful Warriors who made it so easy for me by writing such amazing articles. In addition, my Pittsburgh bestie, Kate Strauss helped by proof reading this issue when my plate was too full. I will continue to contribute to this wonderful magazine and you can always find me at This is My Life ~ Surviving Fibromyalgia and my Facebook page: Fibro Warriors ~ Living Life
Guest Editor: Melissa Swanson FibroModem welcomes your feedback, comments and any appropriate contributions to further editions. If you wish to contact FibroModem, please use the email address: fibromodem@fibromodem.com Š Copyright FibroModem 2012-2014 The views and opinions expressed here are not necessarily those endorsed by FibroModem .
Advertisers Should you wish to advertise a product in this newsletter, please contact FibroModem at admin@fibromodem.com. You can view previous issues of LIVING WELL WITH FIBROMYALGIA by visiting FibroModem.com and clicking the link (in the right column) to the issue that you would like to view.
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This Issue 4 I am Fibromyalgia 5
Leaders Against Pain Action Network
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What Every Newbie Should Know
13 Newly Diagnosed? 15 Living Well When You Are Not Well 18 Accepting and Surviving Chronic Illness 19 Friends and Family: Maintaining Relationships After a Fibromyalgia Diagnosis 21 What Every Fibromyalgia ‘Newbie’ Should Know: Your Pain is REAL 22 Bunnies in Baskets 25 Tips on Travel
What I Have to Say And He Said
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Shelley lives in Texas with her husband and two children. She was diagnosed with fibromyalgia in 2011 and now spends her time trying to find humor in the sometimes ridiculous situations that she finds herself in as she battles illness and parenting at the same time.
By Shelley aka Chronic Mom
I know you’re new to this and I snuck up on you without your knowing. Now that you're stuck with me I thought I'd introduce myself...
HI, I'm Fibromyalgia. The first thing you need to know about me is that I'm invisible. No one else can see me, no one else can feel me, and only you can feel my strength and power. I take energy from you, I cause your muscles to ache, I make you so tired all you want to do is sleep, and then I prevent you from sleeping. I'm a sneaky illness, I crept towards you stealthy and silent so you wouldn't know I was coming. No one knows why I come, or why I stay, and doctors can't figure out what to do with me. Not even scientists can nail down where I come from. They try so hard to define me but I'm good at hiding. I’m so good at hiding I even have doctors convinced that I'm not there, but they just don't know where to look for me. You will have to go from doctor to doctor looking for one who is will even acknowledge my existence. Another thing you should know is that I like to mess with you. Some days I will almost disappear, and I'll let you live some of your life. I'll let you feel almost normal, and I'll get your hopes up that you can have some fun, but when you least expect it I will come roaring back to remind you that I will never leave. You will want to control me, but I control your body. You can't pretend you're normal and wish me away, I will always stay with you. You can take medication, you can exercise more, you can change your eating habits and I may diminish, but I will never completely go away. I am fibromyalgia and there is no cure. I am fibromyalgia and I am strong, sometimes I'm stronger than you. Sometimes I will fight so hard that you will feel beaten. I'll make it so you don't know how to go on. I'll make you feel worthless and unimportant. I'll make pain the only thing you can think about. I will push you down and I will dominate every portion of your life and I will never let go. But…I cannot take everything from you. I cannot take your heart. I cannot take
your joy. Though I will try my hardest I cannot force you to give up. Someday you might find a way to beat me, but you will never forget that I AM FIBROMYALGIA. 4
Melissa Swanson has fibromyalgia and won a scholarship to the National Fibromyalgia & Chronic Pain Association’s national training program, Leaders Against Pain, to learn how to effectively advocate for 110 million people with chronic pain illnesses in the United States.
NEW RICHMOND, Wisconsin, October 31, 2014 – Melissa Swanson of New Richmond just returned from the National Fibromyalgia & Chronic Pain Association’s Leaders Against Pain in Salt Lake City, Utah, from October 23-26, where she learned from leading experts skills to advocate on behalf of millions of people with chronic pain for faster diagnosis, better treatments, more research funding and ultimately a cure for these conditions. According to the Institute of Medicine’s congressionally mandated study, “Relieving Pain in America,” chronic pain affects an estimated one in four, or 110 million U.S. adults, which is more than the number affected by heart disease, diabetes, and cancer combined. “It was an honor for me to be one of 29 people chosen from across the country, to attend the Leaders Against Pain Conference. I was diagnosed with Fibromyalgia in 2010, and after many doctors appointments, I was also diagnosed with 16 comorbids that are common diagnoses along with fibromyalgia. It is my mission to help others who are struggling find medical and homeopathic treatments, exercise, diet, sleep, and life style changes to help them combat pain, fatigue and fogginess that affect our daily lives. Fibromyalgia’s symptoms have caused many of us to lose our jobs, friends, and family. There are too many people who do not know about Fibromyalgia and how it can affect the lives of those diagnosed, and their families. I plan on using the skills that I learned, to spread awareness, education, and support to those diagnosed and their families.” “In addition I have my blog where I write as Fibro Warriors~Living Life & my Facebook page where along with Celeste Cooper and Kate Strauss I am able to share the newest information in the medical research, legal rulings & regulations, offer support and positive affirmations. Swanson will be reaching out to members of the local community and state to help her create the change people in pain have desperately needed. To contact Swanson and to follow her work, please like the National Fibromyalgia & Chronic Pain Association’s Wisconsin Fibromyalgia & Chronic Pain Network Facebook Page, or contact her at swansonmjs@gmail.com.
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Leaders Against Pain teaches skills that address leading an effective support group, creating fibromyalgia and chronic pain awareness events, and working with policymakers to improve access to healthcare and mobilizing the state on important state and national policies that affect chronic pain patients. Upon completion of the training, participants join the Leaders Against Pain Action Network, which is a national working group of individuals across the country partnering to be the voice for millions on critical issues. For more information on the program visit leadersagainstpain.net. Dr. Lynn Webster, MD, conference speaker and immediate past President of the American Academy of Pain Medicine stated at the end of the conference, “We are just a seed. We cannot be it. We must disseminate the information learned here in our communities and create change together.”
About the National Fibromyalgia & Chronic Pain Association The National Fibromyalgia & Chronic Pain Association (NFMCPA) is a 501(c)3 nonprofit organization headquartered in Logan, Utah. The NFMCPA’s mission is to build a united patient and medical community that will execute advocacy programs regarding access to care, scientific research, diagnosis and treatment for people suffering with fibromyalgia and chronic pain. Fibromyalgia is a common and complex chronic pain disorder that affects about 10 million Americans and can be disabling. Researchers believe it is a central nervous system disorder. For more information: FMCPaware.org.
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Julie-Anne is an award-winning author and professional speaker who sits on the Governor’s Advisory Council on Mental Health. After finding her own way out of the darkness, she hopes to help others do the same. The incidents mentioned in this article are covered in depth in her autobiography, Fallen Angel Rising (written under pen name Bridgette C. Kent). For additional information on speaking engagements, blogs, quotes and contact information, see her website or Facebook page.
You cannot get angry enough, swear loud enough, or wish hard enough! You want your old life back. You want fibromyalgia to go away and leave you alone. That’s understandable. However, nothing you can say or do will turn back the clock and make this illness go away. The more time you spend focused on the life you once had, the longer it will take to build the life that you still can. It’s normal to feel sorry for yourself and, in some cases, to feel like you no longer have a purpose. Allow yourself a short time to grieve, but then it’s important to move on. If there are things you can no longer do thanks to fibro, stop to ask yourself why you did them in the first place. Look at what you hoped to accomplish by doing those things. Then, think about how you might accomplish the same objectives in a different way.
Educate Yourself. It’s not enough to read the pamphlet you were handed when you were diagnosed, to ask someone else what they experience, or to take your doctor at his or her word. Do whatever you can to understand this illness on a physiological level. You don’t have to be a doctor, or even a college graduate, to read books like “The Idiot’s Guide to Fibromyalgia,” or “Fibromyalgia for Dummies.” If you struggle with reading, or have difficulty focusing, get the audio versions and listen in the car. It really helps to have an understanding of what’s happening in your body, what you can expect, and what is the standard course of treatment. This also provides reassurance that this is not all in your head. Fibromyalgia is very real.
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Something more can always be done. Very few doctors are experts in fibromyalgia. Many doctors have not heard of treatment options that are available. If your doctor says there’s nothing more to try, or that it is a psychiatric issue, find a new doctor. Keep searching until you have the quality of life that you aspire to have. There is always something else to try. We all experience fibromyalgia differently. What works for one person does not necessarily work for another, and what hurts one person may help somebody else. It can be tempting to ask others what works for them, and then ask your doctor for the same treatment, but that’s not a logical way to approach this illness. Work with your doctor to map out the path you plan to follow. Decide where you will start, and what you will do if that doesn’t work. Trying to follow someone else’s path may cause you to miss steps might have helped sooner and/or with fewer side effects.
Be understanding of those who aren’t. People struggle to understand what they have not lived. When they hear that you’re exhausted or in pain, many people will compare this to their own experience. They say things like “well I’m tired too, but I push through.” They can’t understand that your fatigue isn’t like the “tired” they know; that, no matter how badly you want to push through, you just can’t. (Some doctors say that, to understand the fatigue of fibro, a normal person would have to stay awake for three straight days and then try to function.) People will compare your pain to pain they’ve experienced, but the odds are it’s not the same. There’s also a big difference between pain and chronic pain. To explain chronic pain, I use the analogy of lifting weights. When you start out, you lift the weight easily. After a number of repetitions, it gets harder. Eventually, you will no longer be able to lift those weights. You’ve reached the limits of your endurance. You may be able to lift something lighter, but you will have to recover before you can lift the original weight again. This is how it is with pain. The longer you endure it, the harder it becomes. Even though your pain may not increase from day-to-day, you’re not as capable of dealing with it on the fourth day as you were on the first. Most people have not experienced widespread pain for prolonged periods of time, and struggle to understand this aspect.
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Understanding our pain and fatigue is especially difficult for people when our symptoms come and go. (And they always come and go!) One day we’re running errands, cleaning the house, making dinner and enjoying a night out. The next day, when we can’t even manage a shower, it’s hard for people to believe. It’s easy to be angry when people don’t believe us, understand our illness or show compassion. We want to make them understand. Unfortunately, we can’t push information on people who don’t want to receive it. Attempting to do so only pushes them away. Turn your attention away from those who judge or make you feel “less than.” It’s okay to allow people to fade away. The stress of toxic relationships will only make your fibro symptoms worse. Focus on those who try to understand; those who ask questions and listen to your answers. Resist the urge to get defensive or downplay your situation. Communicate as honestly as possible. These are the people who will be important in your life for years to come.
You don’t have to go it alone. Thankfully, you live in the age of Social Media. Reach out to fibromyalgia support groups online, or locate one in your area. It helps to know others who share your struggles. A simple search for “fibromyalgia” on Facebook will bring up an array of pages and support groups. Chatting with others who share your challenges can offer reassurance, provide new perspectives, and form bonds that will last a lifetime. Be selective, however, of the groups in which you choose to participate. Some groups are 24/7 “pity parties,” and that only serves to make a difficult situation worse; to keep you feeling depressed, and hopeless. Look for groups that focus on positive outlooks and actionable steps. Seek out people who truly LIVE with fibromyalgia. When you do, you’ll see that this illness does not have to be the end of the life you had before fibromyalgia. It may just be the beginning of the amazing life you’re meant to lead. Be sure to join us! Just as I encourage you to find your new passion/purpose, fibromyalgia has given me one of mine. Meeting fibromites from around the country was lifechanging for me, so I now work to offer others the same opportunity. For details on the next opportunity, see www.fibrocruise.com or www.facebook.com/fibro-cruise-2015.
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Joshua David is a 34-year-old Boston resident and copywriter who was diagnosed with FMS and CFS at age 26. Joshua enjoys poetry, pottery and dog training. He can be found at Squidoo, his Wordpress website, Facebook, Twitter, and the Men with Fibro Community. With a beautiful wife whom he adores, a dog and cat, Joshua finds his hands, heart and days, full and satisfying.
So this issue is dedicated to you, the newbies…lucky you! I wish I had better news for you. But it’s not all that bad. In fact, after reading this issue, you might even feel a little better. So, my preliminary recommendation to you all is to read this issue cover to cover. There is a lot to be learned from those who have been coping with this for years now. Why learn it the hard way? My job is to discuss these issues as they pertain to men. I will do the same here. However I often I find what I say to be universal, at least at its core. So for the ladies who were caught in the snare of my captivating introduction, you are welcome to stay and continue reading. My first advice to those new to the field is to find a doctor with which you feel comfortable. This is no small task. It requires a lot of dedication, work, and patience. Trial and error is the name of this game. However, the fruits of your labor will reward you for years to come. It’s an investment; and, one with large payouts in the future. I had to see many, many doctors before finding one that satisfied my needs. Before I got sick, I was a distance runner, 7-12 miles a few times a week. I told one doctor I could not run anymore because of the intense pain. Her response? The reason I was experiencing pain and fatigue was because I had stopped running. Mind blowing! She was not the doctor for me. It took four more tries to find the right one. The second piece of advice depends on your circumstances. If you need to apply for disability, realize it’s going to be a lengthy process. Basically, no matter what your situation, they will deny, deny, deny. Get a lawyer from the beginning. Personally, I used Binder and Binder. You may have seen their commercials. I was very satisfied
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with the way they handled my case. Had it not been for them, I would still be on the deny list instead of receiving the small amount of benefits that I do each month. I spent over three years fighting the government on this. Binder and Binder reconciled everything within eight months. Their fee was more than fair and is worth the time they might possibly save you. Your doctors will be pivotal in the process as well. But having a specialty lawyer on your side can do nothing but good. If you have applied in the past and been denied, try again. There is new information coming out all the time about our affliction. The MTHFR test for instance seems to reveal a genetic link. No more “this is all in your head;” now, it can be proven that you have certain genetic markers indicating Fibromyalgia. Third, I would recommend some peer outreach. Join a forum, a support group, or see a therapist. It is crucial that you talk about this with someone, or mental implosion is a virtual certainty. Your body is broken. Your level of happiness often takes a massive hit. If you plan on going through this alone, you are doomed to a life of isolation. Isolation leads to a deeper and darker depression. You can’t afford this. Why put yourself through this? You don’t deserve it, and you aren’t proving anything by doing it yourself, except that you are indeed a newbie. If you have read any of my previous articles, you will see that I proudly admit that I see a therapist. I resisted this for a long time, because of my macho, male ego. Eventually, I gave in, and the results were incredible. I learned so many new coping skills, and how to reframe my thoughts so that I wasn’t constantly defeating myself. It’s one of the best decisions I ever made. Whichever route you choose, talk about your problems, and listen to what others have to say about how they have dealt with them. You are not alone. Don’t pretend to be. The last thing I would suggest is that as a newbie arm yourself with knowledge about your condition. Having peer support is important, but you are also going to have to deal with “normals,” whether they are friends, family or co-workers. You will often have to explain to them why you couldn’t make a family function, a Friday night out, or that overtime. From this point on, your life will be different. Some people will understand. Some will need your help to understand. You can’t do this if you don’t understand it yourself. A very simple explanation I often offer is, that when you hurt yourself, your body releases a chemical commensurate with how badly you are hurt. It’s a safety mechanism so you know what action to take. People who have fibromyalgia pump out that chemical all the time, for no reason. We experience real physical pain without cause. If they require further explanation, perhaps about the chronic fatigue portion of the disease, I explain that the body can only be in pain for so long, before it starts to tire out. But, you will need to learn all you can about your ailments, so can explain them to your crowd. Not only will having that knowledge help you to proceed, but educating the people in your own life will be easier. After all, you can’t be a newbie forever.
Are you a man with Fibro? Do you want to talk to other men with Fibro – about how they cope every day, what helps them, etc? Join the closed, private group For Fibro Men 12
Amy is the owner/author of The Fibro Fog, as well as the correlating Facebook page. Her blog has been voted as one of the top 15 Fibromyalgia blogs of 2014 by Healthline, and has received this honor for 3 consecutive years. The blog has also been certified for medical accuracy by an M.D. through Healthline. She also was featured in articles by Dr. Sanjay Gupta in both January and February of 2014. Amy presents a motivational seminar full of tips and tricks for living with a chronic pain illness. For more information about the seminar or to book her for a public speaking engagement, please see her blog. Amy is a 43 year old single mom to four now-grown children, and suffers from Fibromyalgia along with several other chronic conditions. She's getting ready to undertake the task of writing a book about the daily trials of living with chronic pain and fatigue illnesses.
After an in-depth exam and blood work, my rheumatologist asked me to meet him in his office. He came in, sat down, and handed me a brochure from the American Arthritis Foundation, entitled "Fibromyalgia". He said "Amy, you have Fibromyalgia, and this pamphlet will help explain it to you". He went on to discuss the disorder with me and the entire time I just kept thinking "Are you kidding me? This pain is REAL so I can't have *just* fibromyalgia". My head was swirling, and in all honest I was angry: Angry at him. I kept thinking that he was just too lazy to find out what was wrong with me. I thought that he must not believe me that I was in so much pain, and was so stinking tired. Even with the pamphlet from the American Arthritis Association in my hand, I thought that Fibromyalgia wasn't a real illness. I thought it was just a name pinned on hypochondriacs. Today, I want to tell you how wrong I was. Fibromyalgia IS real. You CAN be in that much pain, and so fatigued that it feels like an I.V. has been inserted into you, then put on reverse to suck every last drop of energy out of your body. It CAN be *just* fibromyalgia. Like the majority of non-sufferers out there, I had all of the wrong ideas about this very real, very chronic illness. As a newly diagnosed member of this Fibro family we have, I encourage you to grow some thick skin. When you start telling people what is wrong with you, you WILL encounter some that doubts your diagnosis. It may even be someone in your own family: maybe a spouse or a parent; a sibling, Aunt, Uncle, or cousin. You'll also have what-feels-like-a-million people telling you that such and such diet cured their great Aunt's cousin's sister-in-law on the mom's side, so you should try it. You'll have other people tell you that their best friend was diagnosed with it 15 years ago and after she rested enough, it went away. There will be some, who won't say anything out loud (if they have any tact at all to them anyway!) but will be thinking in their head that you're a hypochondriac, or that you're crazy and just need a good psychiatrist. As hard as it is, and I know it IS hard as I've cried many tears myself over it. Do NOT let these people get to you. Don't allow them to bring you down any further than you already are. Instead, think to yourself that they just aren't educated. They're just going off of what they've heard in the past because years ago when Fibro was first being diagnosed, these are the ideas that doctors had. 13
Fibro was put in a really bad limelight. Today though, in 2014, we know through research and studies that none of the symptoms of Fibro are in our head. Studies and tests have revealed that Fibro IS a real, debilitating condition that we have to live with for the rest of our lives. Research has come a long way with Fibro since it was first diagnosed, but unfortunately it still has a long way to go to uncover the exact cause and a concrete treatment plan that will work for everyone. Or better yet, a cure. Feeling overwhelmed when diagnosed is common. Take the time to really read and research this illness. Use the knowledge you gain to educate those around you about your condition. Knowing that you have a condition in which there isn't a cure may have you feeling angry. That is common. Fibromyalgia causes depression for a number of reasons; so if you're feeling sad or depressed, know that it's normal. Tell your doctor, and accept depression meds if your doctor feels that you'd benefit from them. The first time I told a doctor I was depressed, I felt ashamed. I was even more ashamed to go fill the prescription. Looking back, I think how silly that was of me. I couldn't help it though. Depression or any form of mental illness also carries an unfair stigma, just like Fibro does. Do not feel bad. You have an illness; it’s a REAL illness that causes depression. That isn't your fault, and it doesn't make you any less. The two biggest pieces of advice I can give you, is to pace yourself. If you don't, you'll end up in a flare. It's so hard to let go of the lives we're used to living. Busy, hustle and bustle, never-stop attitude. You have to accept, and that comes with time and education, that you have a new life now. You're going to hurt easier. You're going to fatigue a lot more quickly and the fatigue will last longer. You're going to feel sick. The pamphlet I'd received printed by the American Arthritis Association compared having Fibro, to having the flu every day of your life. No matter how hard we may want to, we have to slow down our lives. On days that you feel good, it's so tempting to just jump right in and try to make up for things you've let go on bad days. If you do though, you will end up in a flare and could possibly be down for a week or more. You truly must learn to pace yourself. The next piece of advice, is that you aren't alone. It may feel like it sometimes, but I promise you that you aren't. There are so many wonderful online Fibro pages and groups. Find one, and jump in. Make new friends that know where you're coming from. Friends that understand how you feel and will let you vent without rolling their eyes. Each and every one of us has felt exactly how you do, and we get it. We understand. Know that there are people out there doing their best to educate and advocate for those of us with Fibro and other chronic pain conditions. I'm confident that with enough education and advocacy, that one day our cure will be found. I live on that hope. Those of you who read my blog, or are a fan of my facebook page, know that I consider the word hope, as one of the most powerful words in the English vocabulary. Never ever give up hope, because without it, you'll have nothing. Much love and butterfly hugs,
Amy -The Fibro Frog
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LIVING WELL WHEN YOU ARE NOT WELL 9 Steps to Living a Good Life with Fibromyalgia Lori J.H. Katz, M.Ed. Just Breathe: Slow Deep Breathes Positive Solutions for Living with Chronic Illness A flurry of emotions arise when confronted with a life changing diagnosis, among them are fear, sadness, anger, frustration and grief. Each person handles these emotions in different ways and at varying points in the healing process. I learned early in my journey that there is more to being diagnosed with a chronic condition than taking medication and following a treatment plan. When diagnosed with a chronic condition there are changes that affect not only your physical body and mind, but also who you are, and how you live your life. This in turn affects your relationships. The feelings brought on during the early stages of an illness do not mean one should give up hope. Listed below are 9 things that I have learned about how to live well even when you are not well.
1. Allow yourself to feel whatever emotions arise. When first diagnosed, you may go through a mourning process similar to the process brought on by the death of a loved one. It is important to let the emotions surface. Grief “…is a natural response to a sudden, unexpected change in health…” “The onset of chronic pain or illness is a major life event.” (Toni Bernhard, J.D.: http://www.psychologytoday.com/node/96872 ) Old times never come back and I It’s ok to feel depressed, frustrated, scared, or angry about the life changes Fibromyalgia suppose it's just as well. What comes may bring. The key to accepting these back is a new morning every day in the year, and that's better. changes is to allow the feelings to surface. George E. Woodberry
2. Accept that your life has changed. Acceptance is the most important step to beginning to live a good life having fibromyalgia. Accepting who you are right now Jung chronic condition and all! No more looking back at what was or worrying about what is to come. Acceptance is your starting point! Acceptance doesn't mean giving up, as some may think. Acceptance involves learning to live one's life without allowing your diagnosis to take control. This doesn't mean that the medical conditions or the limitations it might impose disappear; it means you have to learn how to live your life in spite of these limitations. I am not what happened to me I am what I choose to become.
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3. Take control. Although it may feel like your life is dictated by your illness, you are still in control of your choices and of how you move forward in your life. Start by developing the ability to say no. For example, if you are being pressured into doing something that you know would cause a flare-up in your condition, refuse politely. Be aware that saying “no” is never easy. Those you associate with may not understand when you suddenly need to say “no “to social engagements or family obligations, but stay firm! Only you know how you feel. On the other hand you may decide to try something new even if you fear that it may send you into a flare-up. It's your choice to try despite what you think may will come of the action. You may be surprised at your ability to complete the task without pain or to you may learn or identify your pain triggers. 4. Throw perfectionism out the window. Prior to your diagnosis, you may have had the cleanest house or the prettiest garden on your block but when your body can no longer handle these or similar tasks, it's time to reprioritize. You can still have a clean house and a lovely garden, but it doesn't have to be the best on the block. Even if you are not ill, constantly striving for perfection adds a lot of undue stress. If you have a chronic condition, it is very important to avoid stressful situations and worry as they can worsen you symptoms. 5. Listen to your body, no matter what your head tells you. This is extremely important and can be a huge struggle. Finding the balance between what your head tells you to do and what your body will tolerate can take time. Be mindful of what your limits are, and the consequences of not adhering to them. This involves some trial and error. Paying attention to how you feel both physically and emotionally in various situations will help you to determine what is possible. If vacuuming the entire house left you bedridden for a couple of days, then you need to analyze whether or not it is something that you should be doing. Ask yourself: was it the act of vacuuming that caused the pain or was it just that I did too many rooms at once? If it is the act itself, then you may need to solicit help for this task. If you just did too much, then don't vacuum the whole house at once, divide the task up in a way that works for you. This same holds true in all aspects of your life, the food you eat, your sleep patterns, daily When you lose touch with your inner stillness, you lose touch with youractivities and relationships. You and only you know how your body and mind reacts to various self. When you lose touch with yoursituations. This awareness will be instrumental self, you lose yourself in the world. for you as you look towards a more fulfilling life. Eckhart Tolle
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6. Focus on what you CAN do. Learning that you have a condition that will be with you for the rest of your life can be devastating. It is not uncommon during the initial grief process to mourn the person you were before becoming sick. The words used to pop-up often. I used to exercise for hours at a time; I used to stay up until 2 a.m. I used to be able to eat anything I wanted without getting sick. It's time to throw used to out of the window and replace it with now I can. Maybe you can no longer work Let us not look back in anger or out how you did in the past, but there are likely forward in fear, but around in other options for exercise such as gentle yoga, awareness warm water exercise or walking. James Thurber 7. Get educated Learn as much as you can about your condition. Understanding common symptoms can alleviate some of the stress that comes from the unknown. There are national and local organizations that provide information and resources about Fibromyalgia such as the National Fibromyalgia and Chronic Pain Association (NFMCPA). Make it a habit to visit their websites to look for in-person or online support groups, classes or gatherings with others who have the same chronic condition. Knowing you are not alone is a very helpful support mechanism. If you are uncomfortable in a I find the great thing in this world group environment or feel that you want is not so much where we stand as additional support seeking psychotherapy is an in what direction we are moving. option. Look for a therapist who has experience Oliver Wendell Holmes treating people with Fibromyalgia. 8. Advocate for your cause Use every possible opportunity to educate interested people about your condition. This doesn't mean it's your only topic of conversation, but if someone is interested enough to ask you about it - seize the opportunity. It is helpful to educate those who are close to you about your condition and any limitations it has caused. Open communication about lifestyle changes can help to avoid misunderstandings in the future. 9. Be yourself The most important person through all this is YOU! Don't give up or give in, stay strong and be yourself!
Our health is our most precious asset we have at any given moment. Invest wisely! Leslie Sansone
These 9 steps are based solely on the lessons that I personally learned. I did not make these realizations overnight, or all at once. I believe trying to do so can be overwhelming. It is important for you to go at your own pace. Don’t avoid living a full life or trying new things, just find the best way to do things given your symptoms.
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Accepting and Surviving Chronic Illness Clarissa Shepherd
Author - Find Your Way: A Guide to Natural Healing
Acceptance is such a huge word for us. Any chronic illness is difficult to accept. However, one which takes over your entire being is most difficult. The first thing that I found so very hard beyond words to accept, was the fact that I had to resign from my management position. I kept taking my sick time and would try to go back for a few hours and just couldn't sit up to work. I had no choice but to quit, and that in itself, is difficult. We sometimes place our self-worth on what we did each day, and how much we accomplished that for so long, that the emotional part can be devastating. Then there's the acceptance of a life long illness with so many symptoms, too numerous to comprehend. Accepting having to see so many doctors, stay in bed , isolation and loneliness. All of this is deposited on to one person to bare. It’s a process of reminding yourself that this is not of your own making. It is not your fault that you're sick. Forgiving yourself is a huge step to acceptance. I found it very important and helpful to get on a good regiment of immune building supplements. After all, if our immune system was good, we wouldn't be sick. Equally important, is learning and practicing slow deep breathing each day. Slowly in the nose and slowly out the mouth. When we're ill, we tend to take shallow breaths, which don't allow proper oxygen, to get to our brain. This then causes more pain, fatigue, and brain fog. Always begin slowly: about 5 minutes and work up to 20 minutes. Listening to your body, resting, napping, etc., when you need to, is not giving into the illness. It’s taking care of you in your present situation. Pushing will only result in exacerbating your condition. If your car breaks down, won’t you take it to be fixed? It’s the same with our bodies. When you hear these voices of defeat speaking to you, tell yourself that you won’t be defeated by them. You're only learning to manoeuvre on a different path. Realizing this is not defeat, yet quite the opposite - it’s empowering. When we're stuck, we can't move forward. We miss the things right in front of us which could help us to add a better quality to our lives. You are strong, so allow this truth to pour over you. Know that living life in a different way is not giving in or giving up. Talking about it is a huge help. Getting those emotions out of how it makes you feel, to be in this place, at this time in your life, is essential to healing. This won't happen overnight, and will require you to retrain your mind to accept the new “you.” When you find yourself in that place of "I should try to work,” or “I should be able to do more," stop and say "I deserve to be treated better." It’s an ongoing process, so be gentle with yourself, even in how you accept yourself.
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Friends and Family: Maintaining Relationships After a Fibromyalgia Diagnosis Helen “Sue” Walker is President of the Richmond Fibromyalgia and Chronic Pain Association. Her journey with Fibromyalgia began nearly 20 years ago. Sue is a Human Resources professional, and also works as a support group leader and an advocate for people with Fibromyalgia and other chronic pain conditions. Sue published her first book, Taming the Fibromyalgia Dragon: Thoughts on Life With Fibromyalgia, in 2009, and is a contributing author for The Gratitude Book Project: Celebrating 365 Days of Gratitude! (2012 edition), as well as The Gratitude eBook Projects: My Favorite Summertime Memory!, My Favorite Christmas Memory! and A Celebration of Personal Heroes. Sue has three adult children and one granddaughter. She lives in Richmond Virginia, with her husband Jon and 3 beautiful rescued dogs, Maggie, Max, and Missy.
Firstly, none of the following applies to spouses/life partners. That’s a whole different level of relationship and too much to address in a few brief paragraphs. Friends—first, and most important, to have one, you must be one. In order to make and nurture lasting friendships, you must be someone that which others want to spend time. That doesn’t, however, mean you must be able to participate in any or all of the activities your friends enjoy. Real friendship is not dependent on activity it's only dependent on keeping in touch. All you need to prove that point is Facebook. There are many friends who have never met in “real life.” It's not necessary to a friendship that you always be able to physically participate. It is necessary to accept that communication devices work two ways. You don’t have to wait for your friends to contact you—everybody is busy—if you want to talk, then call, email, or text your friends, and ask them what’s going on. Thanks to electronic methods of keeping in touch, there is really no excuse for not checking in with the people you care about, no matter how much fibromyalgia is kicking your butt on any given day. When you talk with your friends, keep the conversation centered on ideas, interests, and activities – the common ground that brought you together to begin with. Spare them the details of your latest test results, or your latest mysterious symptom. Find a support group (in-person, or on-line) for that instead. With your non-support-group friends, talk about the things you have always talked about, whether it's school, careers, family, or politics, it doesn't matter what the topic is, as long as it's not about you and your fibromyalgia. It's not that they don't care—if they're really your friends they do care, but that doesn't mean they want to hear every detail. Plan conversational topics ahead of time to avoid falling into the trap of discussing your health for hours on end. When you're spending time with a friend, consider ahead of time what shared interests or common ground you can talk about. Example: If you, or they, have just had a baby, you might talk about how fast kids grow, and how you just found the cutest little shoes you've ever seen. In terms of what not to talk about, think of it this way - when you're discussing babies, you don't share the lurid details of the contents of the diaper you just changed. 19
A lot of family relationships can be maintained in the same manner as friendships. However, there are some differences. Family members often have a sense of "entitlement" to your personal information. It's important to remember that their feeling of entitlement does not obligate you to satisfy their curiosity. It's not only OK, it's often desirable to keep the details of your condition to yourself. If you have a supportive family, you can measure how much fibromyalgia-related information they can assimilate by their reaction to anything you choose to share. Watch their faces. If their eyes are glazing over, or they’re squirming, as if they are seeking an escape, change the subject—preferably to what's going on in their life. On the other hand, if they seem too interested in the details of your health, to the point where you feel it's invasive, you might invoke your own version of a tried and true "Dear Abby" line, "Now why on earth would you want to know that?" There is a fine line between enough information and too much. How much is too much will vary, depending on personalities and relationships. In the end, only you can make that decision, but in making it, you might consider the following:
Did they ask about your health? (It doesn't count if they only said "How are you?") If you started talking about your health, did they seem interested? (or did they look trapped?)
If the answer to either of those questions is "No," you may have crossed that fine, invisible line into the land of "Too Much Information." Maintaining relationships can be tricky under the best of circumstances. With a chronic medical condition, it’s far trickier than normal – but with a little care and consideration, it can be done.
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What Every Fibromyalgia ‘Newbie’ Should Know:
Your Pain is REAL Nicole Casper is 36 years old. She lives in Coon Rapids, MN with her wonderful boyfriend, 2 dogs and 2 cats, and her 16 year old daughter. She was diagnosed with Fibro just over a year ago. Nicole is a full-time Investigator and Lead Security Officer.
My Mother has Fibromyalgia. I didn’t understand it nor did I understand how important it is to VALIDATE it. That is, until I was diagnosed myself - at the same age Mom was when she was diagnosed. I am grateful that she is still here, and I have been able to apologize to her for not learning about Fibromyalgia – but it doesn’t change the regret. My entire family’s life has been shaped by Fibromyalgia - yet none of us understood WHY! Mom has suffered with Fibro for over 20 years; I am still in my first year. The woman rarely complains - despite the aches, pains and evil sidekicks of Fibromyalgia. Not to mention the other medical afflictions she has been burdened with – from a rare kidney disease to pancreatitis – the list goes on. What does my family’s experience have to do with your pain? Everything. You are feeling what you feel - the pain, the depression, the confusion, the anxiety, the doubt, the guilt – and it IS all REAL. We all have naysayers in our lives - but we don’t have to let them shape our future. It is okay to let go of anyone who doubts you. Do not continue to live with ones who shame you. Fibromyalgia sufferers are unique and each of us has to find our way – and it is ESSENTIAL to have positive supporters in our corner. I am lucky - because of Mom’s suffering, I have someone in my corner automatically. She gets it – she LIVES it. I am blessed with a patient, quiet man, who loves me and listens. He doesn’t always know what to say, and he certainly is not a mind reader but he supports me and is willing to give me what I need (once I tell him what it is). But that doesn’t mean this journey is perfect – there are plenty of others who don’t understand, or who want to offer their warped solutions. I choose to live a quiet life, I am beginning to learn boundaries – saying no to friends is hard, but sometimes necessary. You have Fibromyalgia - it does NOT have you. Be confident in who you are and what you feel – do not succumb to self-doubt that is forced upon you by others. Your pain IS real.
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BUNNIES IN BASKETS Nancy is a writer & national advocate for the chronic pain & pet therapy community. Nancy lives in Franklin Lakes, New Jersey with her husband & has two grown children. She has written for or been the subject of more than a dozen magazine publications such as Arthritis Today & Pain Pathways, with regard to living with chronic pain. Nancy is a member of Leaders Against Pain, a branch of the National Fibromyalgia & Chronic Pain Association. Nancy has designed & developed her own comprehensive website dedicated to chronic pain & pet therapy where she is in touch with thousands of individuals worldwide who suffer in chronic pain. She has a blog & also a Facebook page which keeps current her endeavors related to chronic pain & bunny therapy. Her new rabbit Muffin & she are a very active therapy team, visiting the elderly & working with children who have cancer & other disabilities.
Imagine being a successful human resources executive, homemaker, and mother of two beautiful toddlers - hurtling through life, when a virus strikes. Suddenly you find yourself living with the chronic, unrelenting pain of Fibromyalgia, as well as a connective tissue disease. Your life as you knew it had changed forever - seemingly overnight. What does it feel like when you finally hear the words “You have Fibromyalgia”? While for some people, a diagnosis of fibromyalgia comes quickly, for most people; the diagnosis is often made after a long journey of three or more years to all types of doctors. The finality of hearing you have fibromyalgia may be frightening, confusing, and overwhelming all at the same time. But the good news is today there are many different treatment options available for treating fibromyalgia and other chronic pain syndromes. The prognosis is, of course, better if your diagnosis is made sooner than later. Probably the most important first step in ensuring the success of your treatment plan is to find a qualified, empathetic doctor who recognizes fibromyalgia and is willing to treat all the symptoms that accompany the disease. Many individuals not only experience the chronic fatigue and unrelenting, often debilitating, widespread body pain which are the hallmarks of fibromyalgia, but they may also be coping with a myriad of other symptoms that include headaches, cognitive impairment referred to as “fibrofog”, irritable bowel, depression, and sleep disturbances. It is also very important to understand that you will probably need a combination of therapies to help lessen your symptoms, and initially it may feel like trial and error, so be patient. And please understand that what works for one fibromyalgia patient may not work for another. From a pharmaceutical standpoint, there are many different treatment options, all of which seem to provide some relief for some but not others. Many individuals have partial success taking Lyrica or Neurontin (central nervous systems medications) for their fibromyalgia and other individuals seem to get relief from the SSRI’s like Prozac, Sevella and Zoloft and Cymbalta. Quite often patients will also benefit from medications that increase restorative sleep like Ambien, Restoril, or over the counter sleep aids.
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The newest medication on the horizon, that that shows great promise, is a drug called Naltrexone. Naltrexone is an opiate antagonist better known for its use in assisting individuals to come off of their opiates. But, recent compelling research done at Stanford University shows that in extremely small doses, Naltrexone offers great pain relief for fibromyalgia and other chronic pain patients. Low dose Naltrexone works in a completely different manner in the brain than previous medications. If you go to the news page of my very comprehensive chronic pain website, you can see the results of the recent study done at Stanford University on Naltrexone. While visiting my website, you will also find loads of information on the holistic and alternative treatments effective in relieving some of the pain of fibromyalgia, accompanied by links to studies showing the efficacy of those treatments. These therapies include chiropractic care, massage therapy, acupuncture, water therapy, vitamin therapy, mind and bodywork therapies such as yoga, tai chi, biofeedback, and diet changes. Quite often patients experience significant relief of muscle soreness, irritable bowel and fibro fog when they limit their intake of gluten (which causes inflammation), and sugar and carbohydrates, which cause yeast overgrowth. Yeast overgrowth can translates into muscle achiness. Artificial sweeteners and MSG should also be limited in our diet. They are both excitotoxins, which are known to increase the amount of nerve impulses sent from the brain, and we already know that fibromyalgia patients experience heightened nerve sensitivity so it makes sense that having something in our diet, which increases those excitotoxins that our brain already produces, doesn’t make sense. Last but not least, I would like to mention the therapeutic benefits of AAT, animal assisted therapy. A formal study about it and its benefits for fibromyalgia is also linked to my website, but here is my personal experience which I think will delight and hopefully inspire you all. By a stroke of fate or perhaps luck, after trying just about every mainstream and holistic treatment available - refusing to give up in my search for pain relief, I stumbled accidentally on the most effective treatment for my pain: my 9-pound, soft, cuddly Red Satin Rabbit. In the middle of a blizzard I bought the world’s luckiest but unluckiest bunny. Unlucky because he was born with an immune disease similar to mine. Lucky because we found each other. Because my husband was allergic to cats and dogs, our Australian bearded dragon named Sunny failed to meet the full criteria for a family pet. We all needed something warm and fuzzy like a rabbit. If only I had known all that my snow bunny and I would come to mean to each other. At only 9 months old, Bunnyboy developed a severe jaw abscess. We were told that he wouldn’t survive more than a few months. Well, that wasn’t good enough. I went into the same fighter mode for Bunnyboy that I had used for myself. Bunnyboy underwent surgery, despite the fact that rabbits are prey animals designed by nature to be frail, and they can succumb quickly to anesthesia and pain. Bunnyboy thrived after the surgery and continued to become a cherished member of our family, binkying around the house with a zest for life that I both fed off of and admired. (Binkying is a rabbit’s unique, adorable way of frolicking to say “I’m so happy!!)
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Bunnyboy became the mascot for my children’s sports teams and the live exhibit for more than one science fair. He travelled in the car everywhere with me, and filled the void that I felt over not being able to have more children. He became my third child. When Bunnyboy’s abscess returned a few years later, Dr Cheryl Welch, his veterinarian told us about a new, seemingly more effective treatment for these highly resistant abscesses that was being used experimentally at the world famous Animal Medical Center in New York. So of course, I rushed Bunnyboy right into NY and he underwent surgery where the physician implanted absorbable antibiotic beads into the site of the infection after removing the abscess. The beads would release slowly over three months to combat the infection long term. Sadly the infection had already settled into Bunnyboy’s hocks, but, with proper cleaning and bandage changes, as well as daily penicillin injections that became a family act of love, our resilient bunny recovered from those infections as well. But, while Bunnyboy struggled to hop around the house - bandages and all, something wonderful happened. His fierce determination helped me not to feel so broken and taught me that it was ok not to be able to do everything I used to do. Several years after Bunnyboy’s miraculous recovery, I developed a bone infection in my jaw. I was on Enbrel, an immunosuppressant that posed a great risk for me with regards to even the smallest infection, let alone a serious bone infection. Amazingly, the surgery to clean out the infection also involved the use of similar antibiotic beads that had been used on Bunnyboy. The beads had just recently been approved for the use in oral surgery for humans. Without the absorbable antibiotic beads, my outcome could have been very different. So you see, Bunnyboy helped save my life literally and figuratively. He became MY AVENUE to overcome pain. I was so busy caring for his many ails that I had little time to focus on my own. For those of us suffering with chronic pain, getting a pet may sound like a lot of extra work and energy that we just don’t have to give anymore. But what Bunnyboy taught me was that the extra work of caring for a pet is not a chore: you are actually on the receiving end of pet therapy. Pets make us walk to let them out or take them for a walk, or in my case to chase them around the house like a Nascar driver. They make us stretch to clean their litter pan, brush their silky fur, or snuggle. They stand at our feet and wiggle their little noses or binky across the carpet looking to play, which requires exercise on our part. What better therapy for fibromyalgia? Pets also teach us about the importance of love and affection: that unconditional love really does heal, where medical science fails, prolongs and improves the quality of our lives. When I realized how happy Bunnyboy made my family and me, I knew he could have the same effect on others. He became a formal therapy animal for a short time before he died at nine years old peacefully in my arms of nothing more than old age. May you too, find the best therapy or blend of therapies that can help relieve some of your pain and other fibromyalgia symptoms!! Please don’t forget to visit my website and be on the lookout for my memoir called Bunnyboy: One Woman’s Triumph Over Chronic Pain Through the World’s Luckiest, Unluckiest Rabbit. 24
Kate Strauss is from Southwestern PA. Kate was recently chosen as the Fibro Warrior of the week by Counting Spoons. Visit to learn about her life as an Fibromite.
It’s almost that time of year when travelling is a necessary part of our lives. Travelling with Fibromyalgia is not impossible. It is not always easy but with proper planning you can still make those very important visits with family & friends. Preparation for Your Trip: 1. Choose your destination knowing the fact that you have fibromyalgia in mind. Consider staying in one place. 2. Make sure you plan activities that will not be taxing on your physical health. 3. Schedule down time. 4. Don't feel you need to participate in every activity just because your traveling companions do. 5. Make arrangements in advance for mobility aids if needed. 6. If traveling on a plane, book aisle seats so that you can get up if necessary. 7. Bring items from home that will make for a comfortable trip, keeping in mind that you need to keep your luggage light. If you are staying in a hotel, be aware of their amenities so that you don't have to bring personal items that they will already provide. 8. Create a playlist of relaxing music or meditation to listen to during travel times. This will distract you from worrying about your fibro symptoms. 9. Pack comfortable clothes. 10. Pack protein filled snacks to keep your energy up. 11. Pack enough medication plus a couple of extra days in case you get stuck. 12. Have your doctor write a list of health issues and medication to bring along with you, in case you need to seek medical care on your trip. 13. Use a pre-set packing list prepared in case of “fibro fog” during time needed for packing. During your Trip: 1. 2. 3. 4.
Keep moving. Regular, light exercise will help to avoid flares. Listen to your body. If traveling by car, break up travel time by stopping to stretch every 1-2 hours. Say “no”. If you are in pain, it's ok to forgo a planned excursion. If you are with family and friends, hopefully they will understand and either reschedule or continue without you. 5. Plan for regularly scheduled meals, as well as bedtime and wake up time. 6. Pace yourself. Vacations are supposed to be enjoyable. After your Trip: 1. If possible, plan for a “light” week so that you can ease back into regular life slowly. 2. Also if possible, have a friend or pay someone to stock your fridge before you return so that you don't have to worry about going to the grocery store right away. 3. Don't feel that you have to unpack immediately. Relax, get in to comfortable clothes, drink some water and then once you are feeling more rested, you can tackle the unpacking. 4. Sorting through mail and voicemails can generally wait one more day. If that is a possibility for you, please hold off. It could be the difference between having a flare and not having one. 25
Sources: everydayhealth.com, lifescript.com, healthywomen.org, myrestoredhealth.com