Hello Family, Friends, and Anyone Wishing to Know Me!

How do I explain this to you my family and friends? This is very difficult to do as myillness is "unseen." So allow me to begin by thanking you for taking the time out ofyour day to spend some time with me and get to know me better. A person's time istheir most valuable asset and yours is appreciated.

Pibromyalgia is a chronic condition characterized by widespread pain in muscles,ligaments and tendons, as well as fatigue and multiple tender points - places on yourbody where slight pressure causes pain. Myofascial pain syndrome is a chronic form ofmuscle pain. The pain of Myofascial pain syndrome centers around sensitive points inyour muscles called trigger points. The trigger points in your muscles can be painfulwhen touched. And the pain can spread throughout the affected muscle.

I want to talk to you about fibromyalgia (FM) and Chronic Myofas .ial PainSyndrome (MPS). Many have never heard of these conditions and for those ho have,many are misinformed. Because of this, judgments are made that may not b correct.So I ask you to keep an open mind as I try to explain who I am and ho FM hasassaulted not only my life but those whom I love as well. I cannot sh w you aphysically open wound to show how much pain I'm in. If I could you would take onelook at that, tell me to sit right down, get me a pillow, offer me something to eat ordrink and have that concerned and understanding look on your faces. How ver withFibromyalgia, you will hear from many people that they would rather have a brokenleg any day than suffer the kind of pain these disorders inflict. Tome, a bro cen leg iseven a poor example to compare suffering to these disorders and an insult to those ofus with those disorders.

You see, I suffer from a disease that you cannot see; a disease that there is no cure forand that keeps the medical community baffled at how to treat and battle this demon,who's attacks are relentless. My pain works silently, stealing my joy and replacing itwith tears. On the outside we look alike, you and I; you won't see my scares as youwould a person who, say, had suffered a serious accident. You won't see my pain inthe way you would a person undergoing chemo for cancer; however, my pain is just asreal and just as debilitating. In many ways my pain may be more destructive becausepeople can't see it and do not understand.

You must see with your ears and your heart what your eyes cannot see. You mustlisten carefully to what I am telling you. What I describe to you may not make muchsense to you, and may be difficult for you to understand. You don't have to fullyunderstand my world and you most likely won't. However, hear my pain; listen forred flags, any danger signals, where you may need to help with added assistance. I liketo call it "sending in the troops." Anytime I do not seem in touch with reality.

Please don't get angry at my seemingly lack of interest in doing things; I punish myselfenough I assure you. My tears are shed many times when no one is around. Myembarrassment is covered by a joke or laughter, but inside I want to die. You 'will hear

many things from me that to you seem as easily resolvable. You may 'wonder why Imake the same 'wrong" decisions over and over again. "Why haven't I learned by thistime? Why can't I see the senselessness of my behavior? I may seem to be getting mylife together and them bottom out all over again.

Please understand the difference between 'happy" and 'healthy". When you've got theflu you probably feel miserable with it, but I've been sick for years. I can't be miserableall the time, in fact I work hard at not being miserable. So if you're talking to me and Isound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I maybe sicker than ever. Please, don't say, "Oh, you're sounding betted" I am not soundingbetter, I am sounding happy.

What is happening here? Am I lazy, stupid, etc? Nope. My physical brain andbody are just different from yours. I experience life differently now than before theFM. I feel different now than the person I was before FM. Most of my "friends" aregone; even members of my own family have abandoned me. I have been accused of"playing games" for another's sympathy. I have been called unreliable because I amforced to cancel plans I made at the last minute because of the burning and pain inmy legs or arms and shoulders. The pain can be so intense that I cannot put myclothes on and I am left in my tears as I miss out on yet another activity I used to loveand once participated in with enthusiasm. Do r experience mood swings? If I amhurting I may be angry, sad, depressed, or any of the hundred moods in the world. I'llnever know what mood I will wake up with? I may want to cry on yourshoulder when I'm in Fibro Flair. You may wonder what you said or did that mademe this way. Well you did nothing it's the Fibromyalgia and all its underlining factorscausing this.

While the most predominant symptoms of fibromyalgia include widespread pain andpersistent fatigue, the resulting cognitive impairment of this condition may be its mostmaddening. Commonly referred to as fibro fog, this symptom is a conglomeration ofcognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia,not a psychological one. Just as no two individuals experience fibromyalgia in thesame way, fibro fog also has a varying range of indications, including: Mentalconfusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or payattention, and Language lapses.

This is why I feel like a child at times. Just the other day I put the egg's I bought atthe store in the pantry, on the shelf, instead of in the refrigerator. When I talk topeople, many times I lose my train of thought in mid sentence or forget the simplestword needed to explain or describe something. Please try to understand how it feels to"lose" the keys, only to find them in the freezer. As I try to maintain my dignity theDemon assaults me at every turn.

Occurring at the deepest level of the sleep cycle, individuals with fibromyalgiatypically lack sufficient restorative sleep. We know that at the deeper levels of sleep,called delta wave sleep, a person's mind conducts internal housekeeping. During delta

wave sleep, newly acquired information is assimilated and integrated into the brain.The inability to get sufficient delta wave sleep impairs the ability to recall informationand operate at a normal level of mental efficiency.

Sleep, when I do get some, it is restless and I wake often because of the pain thesheets have on my legs or because I twitch uncontrollably. I walk through many of mydays in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.Just because I can do a thing one day, that doesn't mean I will be able to do the samething the next day or next week I may be able to take that walk after dinner on awarm July evening; the next day or even the in the next hour I may not be able towalk to the fridge to get a cold drink because my muscles have begun to cramp andlock up or spasm uncontrollably. There are those who say "but you did thatyesterday!" "What is your problem today?" The hurt I experience at those words scarsme so deeply that I have let my family and friends down again; and still they don'tunderstand. I have a physical illness and it isn't my fault and I didn't ask for it Idon't want it and I don't deserve it.

On a brighter side I want you to know that I still have my sense of humor. If you takethe time to spend with me you will see that. I love to tell that joke to make another'sface light up and smile at my wit. I am fun to be with if you will spend the time withme on my own playing field; I want nothing more than to be a part of your life. Ihave found that I can be a strong friend in many ways. I am your friend. I amhonored I am to have you in my life.

All I ask is that you become educated about fibromyalgia. I am someone in your lifethat suffers from fibromyalgia. You may think you know everything there is to knowabout it, but there is more information out there than you think It is morecomplicated then you think, and it is more life changing then you think Lend ahelping hand. If you want to be helpful to someone with fibromyalgia, just ask whatyou can do. Be flexible with invitations and plans that you have made. Understandthat sometimes the pain of fibromyalgia is overwhelming. Be active; accompany themto a doctor's appointment and take an active interest in their treatment. You can takenotes at the doctor's office and then review your notes together at home. Don't takethings personally. Some people with fibromyalgia suffer from sudden mood changes.Try not to take these mood swingspersonally as they are part of the syndrome.

So you see, you and I are not that much different. I too have hopes, dreams, goals andthis demon. Do you have an unseen demon that assaults you and no one else can see?Have you had to fight a fight that crushes you and brings you to your knees? I will beby your side, win or lose, I promise you that; I will be there in ways that I Can.I willgive all I can as I can, I promise you that. But I have to do this thing my way. Pleaseunderstand that I am in such a fight myself and I know that I have little hope of acure or effective treatments, at least right now. Thank you for spending your timewith me today.

I Need You To Please Understand Me.