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Fibromyalgia is a very real condi-tion. The core symptom is chronicwidespread pain accompanied byareas of tenderness, sleep problems,and fatigue. Tenderness is common-ly felt throughout the body in peo-ple with fibromyalgia. “Tenderpoints” are painful lumps thatdevelop in tight bands of muscle,and form when the muscle con-tracts and doesn’t fully release.These tender points are used as oneof the tools to classify patients withfibromyalgia.

Fibromyalgia is most commonlyclassified using the followingother criteria:

� Presence of widespread pain forat least three months

� Pain on the right, left sides ofthe body

� Pain above, below the waist� Pain in the neck, back or shoulders

� Pain at the tender points

Individuals with fibromyalgiamay have a range of about 20possible symptoms. Along withpain, sleep problems are a keypart of fibromyalgia: from 70-90% of people with fibromyalgia

have trouble getting enoughrestorative sleep, and feel verytired all the time. Thesesymptoms were reported by astudy of 293 patients withdiagnosed fibromyalgia.

These problems with pain andsleep disruption can touch all areasof your life. Fibromyalgia causeyou to feel anxious or depressed.When you are in some pain almostconstantly and short of sleep, it isnot easy to stay positive and dowhat is necessary to take charge ofyour fibromyalgia. In this booklet,you will meet two women whohave managed to do just that.Joyce and Lynn combined havemore than 50 years of experienceliving with fibromyalgia betweenthem. As you will learn from thesetwo inspiring women, there is a lotyou can do to make living withfibromyalgia easier.

Why treat fibromyalgia? Someone like Joyce, who has hadfibromyalgia for almost 20 years,would say it’s important to treatfibromyalgia “to keep it fromtaking over your life.” Persistentpain from fibromyalgia can have anegative impact on your quality of

What is fibromyalgia, really?


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life. It can affect your sleeppatterns, relationships, your abilityto enjoy your usual recreationaland social activities, your postureand mobility, and your mentalwell-being. Mood symptoms mayoccur because of the unwantedchanges that fibromyalgia canimpose in your life.

The invisible illnessAs well, it may be natural tobecome frustrated and unhappywhen you have an illness thatisn’t always easily recognized byothers—especially if you don’tknow what’s causing your symp-toms. Joyce’s experience is notuncommon.

“I went through a lot of anxietybefore they discovered what I had. I was so relieved to find out thatthere is a name for what I wasgoing through. You can go to workwith your makeup on and alldressed up, and be in the mostawful pain. People just don’tbelieve you, because you look fine.”

When you feel you are facing anenemy that no one can see but you,it is time to reach out. You can workeffectively with your doctor (andother health care providers) to man-age fibromyalgia. Knowing a bitabout fibromyalgia and how todescribe your symptoms to yourdoctor will help you collaborate inyour own care, so you can get thebest possible results from yourtreatment.

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Muscular Pain

Fatigue

Insomnia

Joint Pain

Headache

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Leg Cramps

Nervousness

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Mem

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Concentration

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100% 96%86%

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56% 52% 46% 42% 41%32%

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Partner with your doctor tomanage fibromyalgiaIf you are experiencing symptomsof fibromyalgia, make an appoint-ment to be assessed by yourphysician. It is best to act now.Here’s why:

� It can take time and persistenceto identify and diagnosefibromyalgia.

� Although it cannot be diagnosedwith a blood test or X-ray, it is avery real physiological condition.

� Prompt diagnosis and multi -disciplinary therapy translateinto better overall results. Thatmakes it even more importantthat you see your physicianpromptly.

Getting a formal medical diagnosisis an important step. It confirmswhat you knew all along: that yoursymptoms are caused by a real con-dition—they aren’t “just all in yourhead.” However, management ofyour symptoms will require youractive participation throughout theprocess. Medical treatment is onlyone important tool in living wellwith fibromyalgia. Don’t stop there.

Reach out for answersRemember that there are manypeople out there living withfibromyalgia who understand, and

who will help you in your searchfor remedies that work for you.Lynn Cooper is one of those people,and she has a whole network ofsupport with her. In 2002, sixteenyears after beginning her battlewith fibromyalgia, Lynn helpedestablish the Canadian PainCoalition and is currently presi-dent. “We’re the voice of the sixmillion Canadians who live with alltypes of pain,” she says proudly;it’s a partnership of people thatincludes patient groups, health pro-fessionals, and pain researchers.

Lynn would like to see individualsnewly diagnosed with fibromyalgiagain faster access to clear informa-tion about how to manage theirsymptoms—and not have to huntand peck over many years as shedid. The Canadian Pain Coalitionwebsite is a great source of infor-mation, and can help you connectwith others living with conditionssuch as fibromyalgia.

Joyce also stresses the benefits ofeducation and support. She took ashort pain management course forpeople with fibromyalgia. “It washugely helpful. A doctor and anurse explained what we mightexperience, and how to getthrough it. Everyone attendinghad fibromyalgia. Just talking to


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one another helped a great deal. I learned so much.” The CanadianPain Coalition at www.canadian-paincoalition.ca can help you findpain management clinics, supportgroups, educational courses, andeven online and video resourcesyou can use at home.

Fibromyalgia can be managedHelp for fibromyalgia may comein many forms and from manysources: those who are managingtheir symptoms most successfullyend up using a wide variety oftreatments. What works for oneindividual may not work foranother. Be sure to explore allyour options. Your efforts will payoff, according to Lynn. “At first,you may spend a lot of time try-ing to find the modalities thatwork for you. Once you identifythose treatments and begin usingthem, it frees you up to get mov-ing forward with your life.”

Treatments include: � disease-specific measures � drug therapy � non-drug therapy (e.g., cogni tivebehaviour therapy, acupuncture,massage)

� lifestyle changes (such asadopting healthy nutrition andexercise habits)

What can you do?A lot, Lynn says. It’s all in yourattitude. “Some people withfibromyalgia never shift out oftheir ‘acute’ mode of thinking.They’re waiting for someone orsomething to fix it. When youfinally accept that there is no sin-gle remedy, you change how youdeal with the problem. You’re nolonger searching for a cure.Instead you are looking to man-age the symptoms and changeyour lifestyle to accommodatethose symptoms.” By acceptingthe realities of fibromyalgia andpersisting with a range of man-agement techniques, Lynn hasbeen able to take charge of herlife with fibromyalgia.

Live well. Lifestyle changes such aseating healthy and getting enoughexercise can go a long way towardhelping you feel better.

Keep moving. In addition to help-ing maintain mobility and musclestrength, exercise is well known topromote the release of your body’sown painkillers, endorphins. Trygoing for a walk or a swim.Swimming is helpful for peoplewith pain because it is a gentle,low-impact exercise that is easy onsore muscles, joints, and bones.Yoga is often used by people with


long-term pain conditions; itsbreathing techniques promotemuscle relaxation. As well, a vari-ety of gentle exercise programshave been especially developed forpeople with pain.

Check your attitude. Although liv-ing with pain and fatigue can bringyou down, it’s important to remainpositive. If you find yourself feelingdiscouraged, it’s important to talkto someone. Feeling down for morethan a day or two can interfere withyour ability to manage your symp-toms and gain control over yourfibromyalgia. You may want to joina fibromyalgia support group, or trycognitive behavioural training tolearn how you can reframe yournegative thoughts. Just confiding insomeone who understands mayhelp you feel better.

Live by the Three Ps. There aremany coping mechanisms peoplewith fibromyalgia use to stayengaged and active. Lynn says,“Over the years, I’ve developed a lotof coping mechanisms. I live my lifeby what I call the Three Ps: pacing,prioritizing, and planning. Thatmeans not overdoing it, choosingwhat’s most important when youcan’t do it all, and making plansbased on your own experience ofhow your pain levels change during

the day or in relation to specificactivities. (Keeping a pain diary fora few weeks can help you—andyour doctor—recognize how variousactivities affect your symptoms.)Lynn says: “Living by the Three Psmay seem difficult at first, but itbecomes second nature if you real-ly work at it.”

Feeling misunderstood?It doesn’t seem fair that you haveto deal not only with your symp-toms, but also with the attitudesof others. But remember that untilrecently even the medical estab-lishment didn’t have a clearunderstanding of fibromyalgia. Soyou may need to educate yourfamily, friends, co-workers, andyour employer about fibromyalgia.Offering them an information pam-phlet such as the one provided bythe Canadian Pain Coalition willhelp others better understand whatyou’re experiencing.

Medication treatment optionsLYRICA is the first medicationapproved in Canada specificallyfor the management of pain asso-ciated with fibromyalgia in adults.Other indications of LYRICA (pre-gabalin) include management ofneuropathic pain associated withdiabetic peripheral neuropathyand postherpetic neuralgia in


adults. LYRICA may also be usefulin the management of centralneuropathic pain in adults.

Other medications include drugsfrom various classes of anti-depressants, such as the serotoninnoradrenaline reuptake inhibitor(SNRI) duloxetine, which justreceived approval for manage-ment of pain associated withfibromyalgia. A tricyclic antide-pressant amitriptyline, weak opi-oid pain relievers such as tra-madol, and an antiepileptic calledgabapentin may also be used,although they are not approvedfor fibromyalgia.

What are the goals oftreatment?Experts who treat fibromyalgiaconsider it to be a manageabledisease. Many people who workwith their physicians to take con-trol over their condition and makelifestyle changes as needed mayfind themselves largely able to

return to their previous activities.Much of your recovery dependson your investment in the processof feeling better.

When it comes to medications, it’simportant to have realistic expec-tations. Pain is often measuredusing a pain scale, which allowspatients to rate the intensity oftheir pain each day by selecting anumber from 0 (no pain) to 10(worst possible pain).

In a 2008 study of fibromyalgiapatients, LYRICA produced an aver-age two-point reduction in pain ona scale of 0 to 10. This represents animportant improvement in patients’well-being, and may allow manypeople to return to some of theirusual activities. Restorative sleepwas also significantly improved.Participants in the study had a sig-nificant improvement in pain levelsafter taking LYRICA and this bene-fit lasted throughout the 14-weekstudy. In the long term, it’s impor-

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No pain Worst possible pain

NUMERICAL PAIN SCALE

0 1 2 3 4 5 6 7 8 9 10


tant to continue your drug therapy.If you find you’re experiencing painafter you have started treatment,talk to your doctor to make sureyou are taking the optimal thera-peutic dose of your medication.

Get the best from your medicalappointment You can set yourself up for suc-cess by being prepared for yourmedical appointments. If youhave been keeping a pain diary,share it with your doctor. Don’t go in with a long list ofproblems; choose two or threeissues to discuss.

Here are a few ideas:� Which symptoms bother youmost, and how do they affectyour life?

� Are there sources of stress inyour life that may be makingyour symptoms worse?

� How intense is your pain mostdays, on a scale of 0–10 (with 0being no pain and 10 being theworst possible pain)? (seeNumerical Pain Scale onprevious page)

� Plan to see your doctorregularly to reassess your levelof pain management and todiscuss the effectiveness ofyour treatment.

Work with your doctor on a rou-tine basis, not just when you arein need. That will allow you totalk about all your concerns overseveral visits.

You can do it!Your life is about more thanfibromyalgia. Moving beyondyour pain is a learning process, asJoyce and Lynn will tell you. Theyget the last word.

Joyce: “In trying to find relief,you do learn a lot about yourcondition. I probably feel the bestnow that I’ve felt for a long time.I’m still sore, but I think a lot of itis accepting it and moving on andtrying to make the best of whatyou can. And when you come outof the black hole fibro can putyou in and you get through thisprocess, you see life with a differ-ent perspective.”

Lynn: “Learn about the conditionthat’s causing your pain and thevarious coping strategies, and trythem out in your own life. That ishow I was able to create a life formyself that is productive and pos-itive. I feel I have a good qualityof life because I’m very engagedin how I manage my life withpain.”


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