may fibromyalgia newsletter

8/14/2019 May Fibromyalgia Newsletter

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NOW lets turn this around. YOUARE NOT ALONE! We have allgone through this in one way oranother. All Fibromites suffer from

the Why dont they understandme? Syndrome. Ya know what?You now have a new family. TheFibromite Community is yours. Weinstantly accept you. Once you arediagnosed with FM, and I mean atthe very moment you are diag-nosed, you are accepted. All youhave to do is let us know who youare. This very group, FibroFriends-Forever, accepts you whole heart-edly. We accept you, understandyou, and are here for you.I have some good news for you.We are going to be making somechanges with our group. We willcontinue with the newsletters. We

will be adding on to our email out-reach. We will also be starting alocal monthly support group andthose of you out of town will stillbe able to attend. How? Wellwe are going to work it so thatthere are a couple options. Onewill be to call in and it will be like aconference call so you can partici-pate in the meeting. The other willbe via the computer with an in-stant message service. The localsupport group wont start until

September. It is something to lookforward to. I am planning it outwith a couple other people. Theother email outreach projects will

come over the summer. Look formore emails and a new website.We are also going to plan an eventfor next years Awareness Day.May 12, 2009. Watch your news-letters for information.So, are you still feeling alone? Isure hope not. But, if you are go-ing through a rough patch, youhave my email address and myphone number. I can even put youin contact with another groupmember if you like.

Remember: You are never alone.

{{{ YOU }}}

points." Levels of substance P aresignificantly higher in people withfibromyalgia. Twenty-four adultswith this condition were randomlyassigned to either a massage-therapy or relaxation group. Sub-

jects in the massage group re-ceived 30-minute massages twicea week for five weeks. The ses-sions combined several types of

bodywork, such as Swedish mas-sage, shiatsu and Trager work.The routine consisted of moderatepressure and stroking of the head,neck, shoulders, back, arms,hands, legs and feet. Participantsin the relaxation-therapy groupmet for a half-hour twice weeklyfor five weeks and were giveninstructions on progressive musclerelaxation while lying quietly onthe massage table.The State TraitAnxiety Inventory was used beforeand after sessions on the first andlast days of the study to measurehow subjects felt at that time. Boththe massage and the relaxation

group showed a decrease in anxi-ety and depressed mood immedi-ately after sessions on the firstand last days of this study. Morelong-term effects were also evalu-ated. The Center for Epidemiologi-cal Studies Depression Scale wasused to measure depressivesymptoms. Subjects wore a mo-tion recorder at night to record

activity during sleep and kept a logof the time they went to bed andawoke. A physician assessedparticipants' illness, medicationuse, tender points and pain; andsaliva samples were taken beforethe first and last sessions tomeasure levels of substance P.The results revealed that, over thecourse of the study, the massagegroup, as compared with the re-laxation group, experienced de-creased depression; improvedsleep; decreased pain, fatigue andstiffness; improved physician as-sessments; decreased tenderpoints; and a reduced level of

substance P. According to thestudy's authors, these findings"highlight the clinical significanceof using massage therapy as acomplementary treatment." -Source:Touch Research Insti-tute. Authors: Tiffany Field, Ph.D.,Miguel Diego, Christy Cullen,Maria Hernandez-Reif, Ph.D.,William Sunshine and Steven

Douglas. Originally published inthe Journal of Clinical Rheumatol-ogy, April 2002, Vol. 8, No. 2, pp.72-76.

After receiving massage twiceweekly for five weeks, fi-bromyalgia patients experi-enced improved mood andsleep, and their levels of sub-stance P, a neurotransmitter inthe pain fiber system, de-creased, along with the num-ber of tender spots throughouttheir bodies, according to re-

cent research. The study,"Fibromyalgia Pain and Sub-stance P Decrease and SleepImproves After Massage Ther-apy," was conducted by Tif-fany Field, Ph.D., MiguelDiego, Christy Cullen, MariaHernandez-Reif, Ph.D., Wil-liam Sunshine and StevenDouglas of the Touch Re-search Institute at the Univer-sity of Miami. According to theAmerican College of Rheuma-tology, fibromyalgia is definedas "widespread chronic mus-culoskeletal pain of unknowncause and multiple tender

Y o u a r e n o t a l o n e ! ! !

P a g e 3V o l u m e 1 , I s s u e 3

It is so IRONIC. Those of us withFM are always feeling alone andmisunderstood. Yet there aremore than 6-9 million people in

the U.S. suffering along with us.Isnt that crazy? It is because ofWHAT we suffer from. FM is mis-understood, not us personally.Every chance I get I talk to peopleabout FM and other pain disor-ders. Every conversation leads tothis or that person having orknowing someone with FM.So, then, why is it we feel so alonewhen there are so many outthere? Why is it so hard for others(the norms) to relate to us? Whycant we get our friends and familyto understand or accept that wetruly are suffering even though welook fine? (FM: The Invisible Dis-

ease)One of our new Fibro Friends gotme to thinking about this.(Welcome Leah) I hadnt thoughtabout it quite in this way, until sheand I were talking one evening.How many of us have lost a part ofthe relationships we have withthose who do not understand FM?The majority of us have. It can bedepressing and cause quite a bitof anxiety. Two symptoms I can dowithout.

Massage Improves Sleep, Decreases Pain &Substance P in Fibromyalgia Patients

Body Care

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strong role in the development of FM.I see a vicious cycle here. Stress leadsto sleep disorders which leads to poorsleep, which in turn leads to beingvulnerable to stress. For me when Ihave gone through high stress, or Ihave gotten really upset, this triggersme into a flare-up. Are you a middle-aged woman with high stress thatdoesnt sleep at night??? LOL!!! Ok,I just had to put that out there...I meanreally?!?!What about other chronic pain condi-

tions? Rheumatoid Arthritis, Lupus,Ankylosing Spondylitis, Chronic Fa-tigue, Gulf War Syndrome, and the listgoes on. These all increase the risk ofdeveloping FMS. (Fibromyalgia Syn-drome)Do any of these risk factors make anysense to you? These may or may notbe risk factors that pertain to yourdeveloping FM and there isnt muchwe can do to even change these riskfactors if they did pertain to us. Onething we can do is make a consciouseffort to manage what we can. Ifstress is going to cause a flare, thenwork effectively to change what iscausing the stress, or to change how

you are reacting to the stress. Learn tomanage your health, manage yourtriggers, manage your life. Dontworry, I know it is easier said thendone. That is why I am here. To helpwhere I possibly can. Even if it is justto send out this newsletter. A big partof this management is being part of acommunity and that, my Fibro Friend,you are already doing. So, as I run outof space, I would love to hear fromyou. Shoot me an email. Send meyour story, a moment, something tovent or share.

What makes one person more sus-ceptible to FM than another? Wait,let me rephrase that question...WHYME?!?Well, lets look at the risk factorshere. First of all, statistics show thatthere are 6-9 million people in theUS suffering with FM. Why the 3million spread you ask. Well, hereis my theory. I believe there is sucha huge spread because there are somany people who start out seekingmedical treatment for all the symp-

toms that they are suffering from,but because of the frustration fromignorant, unsympathetic doctors andthe lack of support these people re-ceive from their own family, theygive up. They are told that they arefine. After all, the tests say theyare fine. So, that is my theory ofthe large gap in numbers. Ok, letsmove on.Out of all these FM sufferers, 9 outof 10 of them are women. Being awoman is a risk factor. Women aremore prone to develop FM duringmenopause, but studies suggest thatthat the majority of cases have theironset between the ages of 20 and 50.

So, being a middle-aged woman iseven more of a risk factor.There is some research that showswomen closely related to a FM suf-ferer are more likely to develop FMthemselves. This indicates a geneticdefect that predisposes some peoplefrom the beginning.The next risk factors indicated aresleep disorders and stress. Someresearchers say that sleep disordersare the root of FM. Studies havesuggested that chronic stress plays a

PO Box 1082

Porterville, CA 93258

Phone: 559-756-0894

E-mail: [email protected] URL: myspace.com/ fibrofriendsforever

Fibro Friends Forever has been created for

Fibromyalgia and Pain Management Aware-

ness. Its mission is to help those with FM &

chronic pain disorders to change, grow and

become stronger. Our goal is to make every-

one aware of the issues that face those with

fibromyalgia (chronic pain) on a daily basis.

Education is the key to our health. Along with

informational services, we provide email sup-

port group services. Soon to include a

monthly, interactive support group meeting.

P A I N M A N A G E M E N T

S U P P O R T

R i s k f a c t o r s f o r f m

change, grow and become strong

All material in this newsletter is provided forinformation only and may not be construedas medical advice or instruction. No actionor inaction should be taken based solely onthe contents of this newsletter. Insteadreaders should consult their physician orother qualified health professionals on anymatter relating to their health and well-being. Readers who fail to consult withappropriate health authorities assume therisk of any injuries. The publisher is notresponsible for errors or omissions.

Q & AQ - Have you heard ofusing Ribose in treating some FMsymptoms?

A - I have recently done some dig -ging around about Ribose. What Ihave found so far is that it i s used toboost energy and rel ieve some ofthe achiness that FM patients sufferfrom. I know that supp lemental Ri-

bose is used by some athletes tohelp with their recovery time afterintense exerci se. It relieves thefatigue, soreness and stiffness that isexperienced. If you are consideringtrying it, just check wi th your doc,and do some further reading .Thanks for the question.

Email your questions to:[email protected]


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In 1993, May 12 was designated as the International Awareness Day for Chronic Immunological and Neurological Diseases(CIND) by Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neuro-logical Diseases), to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of theInternational Red Cross. Nightingale contracted a paralyzing, CIND-like illness in her mid-thirties and spent the last 50 years ofher life virtually bedridden. Despite her illness, she managed to found the worlds first School of Nursing.

The National Fibromyalgia Association (NFA) joined the Awareness Day effort in 1997 and has led the call for increased recogni-tion of fibromyalgia each May 12. The NFA collaborates with fibromyalgia support groups and patient advocates around the worldto coordinate innovative national and international events in honor of Awareness Day. Awareness Day activities are designed toincrease awareness of chronic pain illnesses including fibromyalgia, as well as to assist patients and organizations in educatingthe general public, healthcare professionals, government officials, and legislative bodies.

Each May 12 the NFA encourages the FM community to approach their local and state government officials to request a procla-

mation declaring May 12 International Fibromyalgia Awareness Day. To simplify the process, the NFA provides a proclamationtemplate that is easy to customize.

Additionally, the NFA creates an annual campaign and provides materials to assist support group leaders and advocates in coor-dinating their own local events. Over the years, participation in Awareness Day events has increased and gained momentumthrough grassroots efforts of support group and patient advocates around the world. Heres a look back at our most recent cam-paigns:

2007 National Fibromyalgia Awareness Day Campaign: Fibromyalgia in Focus

The NFA and Trillusion Media, makers of the groundbreaking documentary film Living with Fibromyalgia, partnered to coordi-nate screenings of the film across the country. The NFA created Awareness Day packets for support group leaders and advo-cates, including a DVD of the film, movie flyers, postcard invitations, press release templates, and a guide to coordinating theirown Focus on Fibromyalgia event. The campaign was extremely successful, with 135 packets purchased from groups in 40

states as well as in Canada, England, and India. As a result, the film was shown in big-screen theaters, homes, community cen-ters, hospitals, and university facilities, taking FM awareness to a whole new level.

2006 National Fibromyalgia Awareness Day Campaign: But You Dont Look Sick! The Invisible Pain of Fibromyalgia

To highlight one of the main challenges faced by people with fibromyalgiathe difficulty in convincing family, friends, employers,and even physicians that they are indeed sickthe NFA designed a poster of actual FM patients that illustrates how healthy sickpeople can appear to be. We also asked advocates around the world to share their stories with local media. This resulted in nu-merous newspaper articles and radio interviews spotlighting the actual experiences of FM patients.

2005 National Fibromyalgia Awareness Day Campaign: Be Aware! Be Active!The Be Aware! Be Active! campaign sought to raise awareness of the physically debilitating effects of fibromyalgia while pro-moting the benefits of moderate, gradual physical activity for people with FM and other chronic pain conditions. The NFA part-nered with YMCAs and Curves sites across the country to hold special events to educate FM patients and the community on thebenefits of exercise. The campaign also supported and highlighted the advocacy efforts of fibromyalgia and other chronic pain

illness support groups nationwide. The NFA commissioned the design of a special cranberry-colored wristband to commemoratethe campaign; everyone purchasing a wristband was asked to pledge to be aware and be active.

2004 National Fibromyalgia Awareness Day Campaign: Appetite for AwarenessAs part of the Appetite for Awareness program, local fibromyalgia groups hosted awareness events at restaurants in their com-munity. The restaurants provided space for the groups to set up information tables, and also donated a percentage of the day'sproceeds to the local group and the NFA. Families and friends dined together and shared information and support for people withfibromyalgia.

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