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Living with Fibromyalgia: What Helps MeBy Kathy Gamble, RNPage eleven - Living with Fibromyalgia: What Helps MeWhen I was diagnosed with fibromyalgia, it felt like the laststraw in my world coming apart. My divorce had been final themonth before, and the year had already been filled with otheremotional traumas. While I was grateful that the diagnosisexplained the aches and the fatigue I had experienced forseveral months, having a chronic illness felt like one moreloss.My doctor reviewed with me a short list of options fortreatment of fibromyalgia that included medications as wellas other treatments such as heat, massage and stretching.He also advised staying as active as possible and suggestedsomething I found amusing: “Eliminate unnecessary stressin your life.”I was taking only over-the-counter pain medications and didnot want to start more medications yet. I preferred to see howI could manage on my own first. I was still working full-timeas a nurse and I rarely missed work due to my symptoms.Most days I did okay, so I thought I would just continue onas I always had. I functioned at 75 on the CFS & FibromyalgiaRating Scale - www.cfidsselfhelp.org.Looking for AnswersHowever, in my secondyear with fibromyalgia, myhealth declined. I wouldcome home from work andcollapse in bed, unable andunwilling to move. Eachmorning brought anotherstruggle to get out of bed,and I would drag throughwork. This daily grind ofdragging myself out of bed,struggling through the dayand then collapsing whenI got home did not seem tobe much of a life. I was tooexhausted to do anythingelse that had been helpful to me before - all I wanted to dowas rest!But I knew I couldn’t keep on like this, so I started to look formore answers. The thought that there might be other waysto manage this condition motivated me to look for moreinformation on fibromyalgia. Usually if one is ready to learn,the teachers appear and I found this to be true for me in thiscase.One teacher was a book by Stacie L. Bigelow titled Fibromyalgia:Simple Relief Through Movement. The author comparedthe muscles of a person with fibromyalgia to wet concrete.She stated that if muscles aren’t moved frequently, they canstiffen and set, just like real concrete does. She explainedhow movement can assist with feeling better from the painof fibromyalgia. (Ed this book is available at http://www.fibromyalgiashop.co.uk/ for £10.79 )I found this book to be extraordinarily helpful. It distinguishedbetween “movement” and “activity” on the one hand and“exercise”. I learned that I would feel worse if I stayed in oneposition for too long. I began to pay attention to how longI was sitting in a meeting, working at a computer, or evenlying down and resting. I found that a change in position,moving around, or walking briefly, meant less soreness andstiffness.Self-Help and GuaifenesinShortly after reading the book, I started exploring the About.com section on Chronic Fatigue Syndrome and fibromyalgia.This is where I found out about the CFIDS Self-Help course,now called the CFIDS & Fibromyalgia Self-Help course.The course was described as a “blending of CognitiveBehavioural Therapy with group support and principles ofself-management”. The description was appealing to me,because it seemed consistent with what I was graduallylearning: that I was the best manager of my condition andcould learn what was helpful and what was harmful to me.I signed up.I found in the class that there were other people like meacross the US and in other countries. Plus, there seemed tobe hope, as specific behaviours were identified that couldhelp to manage the symptoms. The course textbook alonewould have been a benefit, but to have a group that workedthrough the chapters together was even better.I also continued to explore the CFS/FMS section of About.com.It was here that I first read about the guaifenesin protocol, andpeople who claimed wonderful responses to this treatment. Ichecked out the linked websites: www.fibromyalgiatreatment.com andwww.guiadoc.com. I was intrigued, so I orderedthe source book, What Your Doctor May Not Tell You AboutFibromyalgia, by Dr. Paul St. Amand. .(Ed this book is availableat http://www.fibromyalgiashop.co.uk/ for £14.95 )I started the guaifenesin protocol on my own, as I am a nurseand since I had taken guaifenesin previously for coughs. Afteronly a few days, I noticed that I had some energy again. Myenergy kept improving for the first month or so, and I didn’tseem to have any of the expected worsening symptoms. Butthen I experienced the first of several “reversal cycles,” inwhich my symptoms worsened and I felt as bad as beforestarting the treatment. But these have faded over time and Icredit guaifenesin with helping to improve my quality of life.What Works for MeIn the three years since being diagnosed with fibromyalgia, Ihave encountered various treatments, activities, and learningexperiences. I do have to admit that I really wanted somethingto “cure” my fibromyalgia. I wanted to get rid of this condition,like taking an antibiotic for an infection.The Fibromyalgia Magazine. Year 12 Issue 6 April 2012. www.ukfibromyalgia.com
I know now there is no single panacea for treating thiscondition. But I have discovered ways of being and copingthat have worked for me in managing my health withfibromyalgia. Here is what I have learned so far, what I havefound helps me:Resting - I rest when I need it, and also when I think I don’tneed it. When I listen to my body, it tells me when I need torest. I do much better when I listen and respond appropriatelythan when I ignore what I am trying to tell myself. I had tolearn to rest, as I was used to using my time “productively.” Ihad to learn to stop and rest, and use the self-help course’sdefinition of rest: lying down with eyes closed in a quietenvironment. Being on the phone or watching TV while lyingdown did not qualify as rest.Sleeping well at night - My outlook on life improvesdramatically when I have had a good night’s sleep. In contrast,if I am awake all night or even part of the night, the next dayis difficult. To help me sleep better, I had to quit staying uplate, eliminate stressful evening activities (like being on thephone), and identify what could help me get a good night’ssleep. This includes going to bed by 10 p.m., taking 20 to30 minutes for reading or prayer, and using medications, asdescribed in the next section.Taking medication as needed - Besides the dailyGuaifenesin, I also take Ibuprofen (Advil, Motrin) during theday as needed, and a dose of Naproxen (Aleve) at night. Ialso have a prescription for a muscle relaxant that I take onlyat night which usually helps me with sleep. Sometimes I willadd in an Excedrin PM tablet to help with sleep.Using low heat - Either a heating pad or an electric blanket,depending on how much and where I ache. If I turn the heatup past low, I start to feel worse. A warm bath also helps!Avoiding certain foods - I read the Sugarbusters book, TheZone, and the dietary guidelines in the book on guaifenesin.While I don’t adhere to all their principles, I do feel betterwhen I keep to the guidelines than when I don’t, particularlyin avoiding foods with white sugar.Moving/activity - I feel better if I take “walk breaks” at workor have some sort of change in position if I have been sittingfor more than 30 minutes. As mentioned earlier, I learnedthis from reading Stacie Bigelow’s book. Mild stretching in themornings or in the evenings also helps to decrease some ofthe aches and soreness, particularly in my lower back.Being aware of how I feel - Denying my pain and not payingattention to myself and how I feel can lead to my feelingworse, so I have learned to adjust and do what helps me. Atthe same time, it doesn’t help me to ruminate on how bad Ifeel, because then I feel worse and notice the pain more.Limiting social activities and having a quiet home life -Being around a lot of people is hard on me, and I have thatsituation every day at work. So when I get home, I usually letthe answering machine take the calls, and I keep to myselfwith just me and my children. It helps me to be at home inquiet surroundings and to be peaceful.Planning for work - It helps me to have some control overmy work hours. Having to be at work very early or stayinglate is hard on me but manageable one or two times a week,as long as I plan for how I will make up for it on other days.Also, I have learned that I am more effective if I set a limitednumber of priorities for each day. Otherwise, the details canoverwhelm me.Reframing - I don’t have control over what happens in myday, but I am working on determining how I will react to whathappens. Sometimes that means choosing not to react ornot to respond. For example, I get a lot of emails at workthat contain new assignments or requests for information.Some are rather demanding. If I responded immediately toevery one of them, I would spend time and energy on thingsthat may be better handled another way. Now I choosewhether to respond immediately or answer later when I havehad an opportunity to think it through or talk with othersfirst. Sometimes I choose not to answer at all, and that hashelped me on several occasions. I have either followed upwith a phone or a conversation in person to explain. Thesestrategies have often kept me from reacting negatively touninvited demands.Scheduling in recovery time - By scheduling planned timeto rest, I can help defray some of the excesses as they comeup. For example, if I have to stay late at work one day, thenI may leave early the following day. Likewise, when I havecompany during holidays, I set aside days before or afterwhen I can have time by myself to rest. By planning for andscheduling my needed recovery time in advance, I am morelikely to stick to it. This strategy helps me decrease additionalpain or flares from overdoing.Seeking help from outside sources - When life becomestoo much for me, I seek help from outside sources. I haveparticipated in some online and in-person 12 step groups,and I entered counselling. Both have been extraordinarilyhelpful. Also, allowing and requesting help from othershas been helpful. Sometimes this has resulted in positivedevelopment for others, as well as decreasing my burdentremendously.Praying/meditation - I have found that particularly in timesof increased symptoms, simply to be quiet and reflect or praycan have a very calming effect.Scheduling massages - It may be painful at the time, but Iusually feel better afterwards.Utilizing aromatherapy - Particularly lavender and some ofthe citrus scents, either in candles that I burn or in lotions.Page twelve - Living with Fibromyalgia: What Helps MeThe Fibromyalgia Magazine. Year 12 Issue 6 April 2012. www.ukfibromyalgia.com
Page 1: Year 12 Issue 6 April 2012SEVEN TYP
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