In order to be diagnosed with Fibromyalgia a person has to experiance pain in at least 11 of the 18 areas of the body specified in the Copenhagen Declaration in 1992. (Journal of Musculoskeletal pain, vol.1 no.3/4, 1993)
The further definition requires that the tender points must be in all four quadrants of the body. These areas include the upper right and left of the body and the lower right and left parts of the body.
In all cases of diagnosis, hypersensitivity is present upon these areas.They are tender and can be painful when pressed upon and are found equally in pairs in these quadrants.
Myofascia is a thin almost translucent film that wraps around muscle tissue. This is the tissue that holds all digestive systems , reproductive systems, and all other muscles together. When these areas are aggravated they become sensative and they tend to respond with pain. They usually become aggravated due to stress either by emotional issues , illness, injuries ect. This is where the term Myofascial Pain Syndrome or MPS stems from. According to DR. Devin Starlanyl,"It appears that this calification" or tightening causes more than double trouble. When the myofascial tissues become thickened and lose their elasticity, the neurotransmitters' ablility to send and recieve messages between the mind and body is damaged and the communication between the mind and body is disrupted. Myofascia,then,may well be the key to what is wrong with people suffering with FMS/MPS."This tightening can be very painful and is considered a "Flare". Flares are usually triggered by many issues. They can be stress related or activity related or even mood related. Depressive states, too many physical activities, and sudden dramatics to ones body can cause a flare and can last a short while or go into weeks of uncomfortable pain. People who suffer such feelings explain them as tingles, aches, shooting pain, knife like stabs and cramping. It is also not uncommon for one to feel extreme exhaustion from these episodes. Experiencing the fatigue can often be just as debilitating as the pain itself.
Signs of oncoming flares can be dizziness, fatigue, weakened muscle strength, achiness, slurred speech, concentration issues and disturbed and misguided direction.
When feeling that you are in a flare always remember to try and relax as much as you can, avoiding as much activity and stress as much as possible. These things can and will prolong the flare .
A good source of researching these subjects came from the book Fibromyalgia & Chronic Myofascial Pain Syndrome / A Survival Manual Written by Devin Starlanyl MD. and Mary Ellen Copeland MS.,MA
This book is one I highly suggest to anyone looking for a great resorce on the subjects of FMS, MPS, CFS and chronic pain in general.
.(understanding)
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A little about me. . . .
Diagnosed in 2000 with FMS.
Diagnosed again in 2001 with FMS, MPS, CFIDS, leaky gut syndrome, and IBS.
Born in March 1973
Married 8 years to my Husband, have a son and live in Michigan.
First Diagnosis after horrible delivery with my son born in 1999.
10 year sufferer of FMS.
My description of my life with chronic illness. . . .
In the simplest of words I want to say cheated , robbed, debilitating, crippled, my life stolen from me and anything else you can think of that explains the death of your old life as a human being on this earth. In other ways I can say I found a new life , with more meaning. A life that has humbled me, teaching me new ways to adapt to what has been changed .
I have watched myself go from walking miles to walking only minutes. I have seen my face change from vibrant to stressed and my body from youthful to aged in a matter of a couple years. I have seen myself go from running up flights of stairs to crawling up them and scooting down them on my rear end. At times I wonder , am I 31 or am I 71?
I question my future. . . Will I still be walking or in a wheel chair? I use a cane on bad days , but will it become a way of life for me later? Will I be able to go to my son's football games shouting from the stands , or will I be on the sidelines watching in uncomfortable pain?
People who do not understand this illness can not possibly understand what goes on in our thoughts daily. The questions , the concerns , the worries. No matter what we are told about taking it one day at a time and how we need to relax and make the most of our life , no matter how often we hear this , it still doesn't seem to leave our focus. It is what we think of when we wake up and what we think of when we go to bed at night. It is in our thoughts allot because we feel the pain and fatigue all the time. We wake up feeling it , we focus our meals around it , we socialize based upon how we feel for the day and how much we can handle activity wise, we take meds or don't take meds depending on what we are going thru . . . all these things affect every aspect of our lives. It is an indescribable feeling. Even those who have this illness know the unpredictability of it. We never know how we are going to feel from one hour to the next . It all depends on what "IT" wants to do.
Once in a while we find ourselves having a day that is so blissful. . . no pain . . no fatigue, everything is like a dream. We forget our limits in that moment and live the day out like we are totally normal. Then just as quick as it has come , it leaves and our bodies respond to all the activity we brought upon it on the good day. In spite of how gloomy this all sounds , I have found peace with it. I do have bad days as most all have with this , but yet in the midst of it all , I have learned how to manage it some and how to live with it. I have no choice but to live with it. I do not want to become a statistic to the suicide trend that Fibro had become to many. I don't want to give up and let it dissolve my life either . I am not ready to give into it all yet. I am not ready to accept that I am disabled due to it . I am not going to let it take my dignity and rule my life. It has to a certain degree , but it cannot have it all.
I am still my own person , my own woman wanting to have some control yet of my body . I want freedom to make choices on my own whether or not I can or cannot go to the store , walk to the park with my son , go to a family function , work , talk on the phone. All these things can be robbed completely from me but I won't let Fibro take what is left of me. I have no control on to what degree the Fibro wants to attack me. It can bring me to my knees , but it will not defeat me. I will not let it take from me my as a whole, my dreams, and my independence. I need to hang onto what little bit I have and fight it all with the will power I have. I am too young to suffer this way and say , ok you have me. I may have to suffer , I may cry , I may struggle , I may yell and feel robbed , I may complain and I might try to find a cause of it all , but yet , I am still here with it , living , breathing and I am still alive. I have a purpose and am trying to find a reason for it all , a meaning for why it has selected me. I know I am not alone and there are others who feel as I do. If I focus on the what if's , why me , and what will become of me . I am only wasting my time in finding meaning to it all.
I will never find the purpose for it , but I know that God knows His reasoning. I am thankful for this illness in a way because it has changed me in so many ways that are positive that I had never expected. I have found peace in knowing that thru this illness , I can use it to help change the way people treat those with chronic illness. I have an opportunity to help change the world's thinking and help spread awareness and hope. If anything I can say about all of this is that I have been humbled as a person , sensitive to others needs. The desire to find all the answers has been instilled and the wanting to help others cope ...This has been my therapy. Trusting the Lord with every aspect of my life and finally learning to let go and let Him take over. Knowing that I don't have all the answers and trusting that some day I will see the true reasons why. Until then , I would be selfish in just sitting and complaining and not doing anything with it. I think in all our lives with Fibro and chronic illness in general, we find this to be true. We have a bond that no one can even understand. I have great supportive friends, supportive Husband and family , yet I know they cannot possibly really know what it is like to feel like you have the flu everyday . They don't know what it is like to hurt and ache all the time. Their headaches are our good days. I am grateful to the people in my life who have made a difference and do support me though. They help me keep going. With my faith in God , my family and friends, life with their burden may seem much lighter. It is important to find support. Some aren't as fortunate and have no one in their lives , but finding a support group or support network is the best way to cope when you feel you have no one. The groups develop friendships that last a lifetime and the much needed support to handle life's tough days.
How to Find Support . . .
The best way to find support is to find your local Fibromyalgia Chapter in your area of living. If that is not a possibility , there are many support groups online ready to assist you with any support you need. There are groups available that help with questions you may have regarding your feelings , emotions and conditions. There are groups that cover medical info and spiritual needs also concerning this illness. There you will find many helpful individuals who can help answer the tough questions. Remember, they too suffer , so there is a deep understanding for how you are feeling both physically and mentally. It is very easy to bond with your online sponsers and friends. There is also great opertunitys to meet some of them in person. I have met a wonderful fellow Fibro friend through the Fibro site @About.com. Wendy lives only an hour from me and even though we don't see each other much , we do keep contact thru e~mails , phone or by Instant Messenger. This helps you stay focused and feel that there is someone who truelly understands your current needs. It is helpful to develope these types of friendships because they help you keep going . Their influence helps you stay possitive. Just by knowing that they feel what you do makes all the difference in the world! THANK YOU WENDY, YOU ARE TRUELLY A SPECIAL PERSON. XOXOX
Here's a hint to find a support group, find a search engine . . . my personal favorite www.dogpile.com This one is huge! Type in Fibromyalgia. You will get a ton of info. Find some websites and look for groups. You will find alot of info along the way. It is very easy to get side tracked. Happy researching!
HOW ABOUT A GOOD LAUGH TO LIGHTEN THE LOAD . . .?
NINETEEN GOOD THINGS ABOUT CFIDS
What's so wonderful about CFIDS? Not much you probably think. But there's a
lot of stuff going on in my life that I'd never even dreamed of BC (Before
CFIDS). Let me tell you about some of these dubious joys. (Then they will take
me away under restraint).
Good Thing Number 1: I have entered several contests and have a good chance of
winning e.g. Cognitive Dysfunction Poster Child. (First prize is a 5-year
membership in Medicine of the Month Club. I don't remember what second prize is,
which increases my chance of winning.
Good Thing Number 2: I have saved money on books. When my brain is "down" I
am able to read the very same book I read last week without recalling the ending.
Good Thing Number 3: I am a cheap date. I don't consume alcoholic beverages or
eat fancy desserts (sugar being a no-no). Such a deal!
Good Thing Number 4: I have found myself to be precocious. My parents are in
their seventies and are just beginning to complain of symptoms I've had for
years (in more advanced stages, no less): short term memory impairment, energy
depletion, and difficulty getting around, to name a few.
Good Thing Number 5: I can fool people. I can be sick without even looking
sick. Ha Ha, joke's on them.
Good Thing Number 6: When I have a relatively good day, it feels wonderful.
"Normals" have to have a much more wonderful day to think it's wonderful.
Good Thing Number 7: I've made new friends! I am on a first name basis with
doctors, their staff, pharmacists and insurance company claims clerk.
Good Thing Number 8: I have something legitimate to complain about. You know
those people who "have it all" and complain anyway? I have no respect for them;
I have a genuine problem, and even the press (and to a lesser extent, the CDC)
acknowledges its authenticity now.
Good Thing Number 9: When asked by the insurance person at a doctor's office
if I've met my insurance deductible for the year, I can say "yes!" even if it's
only January 7!
Good Thing Number 10: I've been studying CFIDS in great depth since I got it
(or it got me) in late 1984. Never before have I been such an expert on
anything.
Good Thing Number 11: I never make the bed anymore because chances are I'll be
back in it before long.
Good Thing Number 12: I am easy to find. Although I sometimes venture as far
as my office or a store, I'm generally home.
Good Thing Number 13: Let's skip 13: I'm not superstitious, but why take
chances?
Good Thing Number 14: People keep asking how I am, how I'm doing, etc. I love
attention.
Good Thing Number 15: I have actually heard doctors say " I don't know". This
has not been known to occur among members of the general population.
Good Thing Number 16: I have acquired a lounging/sleeping wardrobe. Pretty
funky.
Good Thing Number 17: No batteries, assemble, or special equipment are
required. This CFIDS thing just runs on its own.
Good Thing Number 18: Dysequilibrium saves money on amusement park admissions.
The same sensations are produced at no cost whatsoever.
Good Thing Number 19: Due to short-term memory impairment, I can hide my own
Easter eggs.
A friend of mine sent this to me and I had to share it . I know it may seem harsh to some , but to most of us , it is really cute and REALISTIC! I have no idea who wrote this but I am glad they did. Thanks for sharing the laugh, Guy and to the person responsible for this wonderful portrayal. . . THANK YOU! You have to be able to laugh about it at times. Laughter keeps us going and sharing the laughter makes the roads traveled a bit smoother!
The FRIENDSHIP we share is like no other,and the gift of LOVE sustains.
To each of you I share my life, and with GOD HE'LL HEAL OUR PAIN.
Thru these TRIALS things seem TOUGH, but through it all we'll be .
The way our HEART holds our desires,and someday WE WILL BELIEVE!
JUNE ,13TH ,YEAR 2001
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