Please post any letters or information you might come across that would help explain our illnesses to family and friends.

Thanks! Sharon

MY NAME IS FIBROMYALGIA by Terri Been

Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!

I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day. Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of they will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out...the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.

The Thief of Many Lives I am constantly on the prowl in search of new victims. I do not discriminate--health care workers, teachers, students, airline personnel, teens, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you.

Just when you are at the peak of your endeavors, climbing that career ladder or building your family and home, I will find you. There is nothing that you have in your life today that I am not capable of destroying tomorrow, your career, your education, your goals, your dreams, your family, and your life. I will have it all. I will strip you of your ability to function at any level above minimal, and from this day on you will refer to that minimal as a "good day."

I have the ability to create an invalid out of you overnight, and I will. It will take a marathon effort for you just to get out of bed. At a cellular level your immune system will be in a constant war battling itself and unnamed viruses which will painfully be replicating in your brain. I promise you despair along with isolation and losses far beyond what you can ever imagine.

Your mind will be in a constant "fogged" state, your expression will be unable to express, and your eyes will have a noticeable "glazed over/drugged out" look. You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond your ability now. Your mouth may feel like it is full of marbles when you try to speak, as your tongue twists and nothing you try to say comes out right. Who would believe your level of education when you can't even string enough words together to make a complete sentence ... or one that makes any sense.

I promise you, at any unsuspecting time, severe abdominal pain, nausea, vomiting and diarrhea along with a host of gastro-intestinal disorders. I will make you weak and lifeless as one could be without being confirmed dead. You will be house-bound or in bed for several years if not the rest of your life. As part of incapacitating you, I will make your heart race and your head pound; your throat will constantly be sore and your lymph glands will swell. That will all seem trivial after I inflame and spasm muscles throughout your body. Crushing a grape may take too much energy or be too painful now.

On those nights that I allow you to sleep, you will awaken drenched with sweat and throbbing with pain. Perhaps I might even throw in a little seizure activity. On those nights that I do not allow sleep to occur, I will torture you with thoughts of death.... Not suicide, but death. Simply because you have not come to realize that this is your new life, and that you are not living.

I have also done a few things that you may not be aware of yet. I placed some lesions on your brain (have you noticed how you have difficulty with balance and memory yet?) and have permanently turned your immune system on high. I have shorted out your nervous system so that you have intermittent numbness and tingling which might resemble an electrical current zapping you from time to time.

Now I have you, I have taken over your body and mind. I have stolen your life but left you alive, not very functional, but by clinical definition you are still alive.

Your family will not be able to give you all the constant care that you need on a daily basis. As for your friends, well, they're still on that ladder climbing up. I'll find them soon. By now you must have learned the definition of isolation, if for no other reason just so that you do not have to explain how you feel to others because they won't understand anyway. Isolation will save you all that energy.

Your health insurance has already been or will shortly be discontinued as you lost your job from not being able to "keep up." Perhaps you got caught dozing off or called in sick one too many times. Now that you are no longer employable or insurable when you seek medical care, any doctor who figures me out will diagnose you and say that what you have is presently not curable.

Now it is time for you to seek out medical care, nation-, if not world-wide. You will give more blood samples and have more examinations than you ever imagined existed. Then you can take the results to dozens of doctors in search of a diagnosis. One that is valid and accepted by the

medical community and insurance companies. One that does not label you as depressed or say that "it is all in your head!!!" Most doctors will suggest a vacation, weight loss diet, new or increased love life, help with the children, or change of scenery as the "cure," mainly because you look like the picture of health. This is my mask of deception.

You will pray for a positive word from current research. Research which you will soon learn is quite limited due to lack of funding and government support. You will learn new vocabulary which contains words like: T-Cells, Cytokines, Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Seratonin, Cerebral lesions, and Immune Dysfunction are among a few. However the most important words that you will need to know and fight for the most are Social Security Disability and Medicare.

At one point I may give you a false sense of recovery or remission. let me assure you, I'll be back, as you are my prisoner and that makes me your keeper. I have placed the lives of millions of people nationwide in limbo. I would consider this an epidemic, wouldn't you?

Eventually I will bring the government, health care workers, and society to its knees in search of unraveling my complexities, which are crippling humanity. I leave it up to you, my victims, and your caretakers, to educate the public and let them know that I am very real and that you are very sick.

I AM CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME

© Kathleen Houghton, Director, CFIDS Network of Alaska, 1996

These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on .... it applies to everything. That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro, if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.

Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you - people who are not sick - for many things.

But most importantly, I need you to understand me.

*Even though the following is regarding Lupus, it is pertinent for FM, CFS, etc.... ___________________________

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

AUTHOR: Christine Miserandino

I have taken on the first example and am sending it to all I know for the awareness day, early tho

kind regards

Connie

If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

I dont jave any great writing to share, but thank you to those who did. I sent one of these to my family & friends. maybe one day I wont feel so guilty for feeling ill.

My goodness Sharon, that is the most amazing explanation of Fibromyalgia!!!! I wish I could print it off and use as a hand out!

Cheers to you!

Jen

Thank you so much! I just emailed my husband the last one about fibro!!

Hello Family, Friends, and Anyone Wishing to Know Me, Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person's time is their most valuable asset and yours is appreciated. I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS) and Chronic Fatigue Syndrome (CFS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well. You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, which attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can't see it and do not understand.... Please don't get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to cry.... Most of my "friends" are gone; even members of my own family have made me feel sad in there incomprehension. I have been accused of "playing games" for another's sympathy. I have been told it is all in my head. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my back, neck or hands is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. I feel like a child at times... Just the other day I could not find my wallet, I searched the house and the car and even went into work because there was a large amount of money in which needed to go to the bank. When I finally found it in the dirty clothes hamper I had had such a panic attack I continued to cry for another hour. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to lose the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand. Sleep, when I do get some, is restless and I wake often because of the pain in my back or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity. And just because I can do a thing one day, that doesn't mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say but you did that yesterday what is your problem today? Or "think positive and you will feel better" or my all-time favorite "get tough, exercise to build strength" (no one seems to understand that will just harm me more)... The hurt I experience at those words scars me so deeply I feel I have let my family down again; and still they don't understand. On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life. So you see, you and I are not that much different. I too have hopes, dreams, goals and this 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 be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand. Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you. Please understand!

Copyright of www.fibrohugs.com Written by Ronald J. Waller (edited by Bree Smith)

Sharon, I CAN'T tell you how much these hit home, Very Good writing!!! MANY THANKS!!!!!! Andrea

All, Thanks. I am in tears reading these. I get so tired of hearing, What is wrong with you that it was nice to hear some of these letters. I actually made my husband read one of them. Thanks so much, Shalome

I want to thank Sharon for posting these letters. FINALLY, a way to explain to my family and friends how debilitating this illness really is. I've been in denial for years. My best friend who moved away has FM and she said, "I know you have a lot of the symptoms". It took almost three years before something "better" happened with my doctor. I'm scared and worried about my future, and I thank you for this message board.

jadgeb

Cant stop crying.

Thank you for sharing these letters with all of us. Have felt so alone. Just today began to try to reach out for support from others and have learned so much. Just knowing that someone somewhere does understand what its like helps so much.

thank you. thank you.

site and this thread. It is so refreshing to read the posts and to know that what they say is what I am feeling, I am normal but my ilness isn't. Thank you thank you thank you.
[This Message was Edited on 05/07/2008]

I tell people that it is like I am in menopause, getting chemotherapy and have beginning of Alzheimer's at the same time.

Tina

I have FM & CFS. 4 Years ago my GP thought I had MS and sent me to Mayo Clinic to see a specialist in this field. I was told it was not MS. Just prior to that appt. I was so dizzy at work, passed out and on the floor out of it for sometime. Ambulance came and took me to the ER. Brain scan was done and I was told I have 2 lesions on right side. One 6cm and the other one 2 cm. Of course, I had no idea where these came from and the ER doc just told me he would send the report to my GP. Over the last 4 years, especially lately in the last 6 months I have become much worse with balance and have fallen several times. I have gotten so dizzy and passed out in my home where I am alone. Often I feel it coming on and crawl into bed before I fall. I am also a Type II diabetic, but sugar has not been the cause of dizziness or passing out. I have numbness in both hands throughout the day. Have pains lately that are severe deep like arthritis in my right foot and right knee to the point I can barely walk. My left side will have aches in knee and foot, but not as bad as the right. My vision gives me fits. I still work when able cause I need insurance and money to pay mortgage. Many days I cannot drive to work 35 miles one way. The other day got 1/2 way there and had to turn around and get in bed as I was so fuzzy. At work there are days I cannot read right and it drives me half crazy. I've been on Lyrica for about 7-8 months. Also on antidepressant for depression. Lyrica really helped with depression, but I don't feel it has done a thing for the FM pain wise. Strong pain meds and OTC pain relief drugs are not helping. I am 58 and feel so old some days and it is scary. What ever it is you may know about these brain lesions I would be interested in hearing about............My best to you......Thanks

HI I would like to keep in touch with somebody maybewith the same problems I tend to keep too my self even with my family they just do not getI Have beengoing on 20 .I HAQVE F1955IBO Asthma Arthrista ectBut IAm bored (edited to remove email address per rules)

how do you go on with Memopose fibo chronic faicineitague arithis and ect help any soloY husband bought us a hot tud which help out ousome ousome BEST GIFT EVER IT IS THE NEW SOFT TUB THERAPTUDS BRENDAL

What a well written article! Thank you so much for sharing that. I sent that to all of my friends and family.

Everything I read in this thread just blew me away! I found this site as I was waiting on dinner to finish and all I could do was cry. I know no one else who has FMS/CFS and most of the time feel very alone. While my family is aware of the conditions, I often feel that there is not much real understanding. I especially liked the statement "I give a piece of myself in every sense of the word when I do anything." That is so true! Everything we do does cost us something. thanks so much! I'm looking forward to browsing around.

Sherry, Tears come to my eyes and linger on the edge for I have cried too many tears for my son who has CfS.I read your letter oh how perfectly written on this disease no one really seems to understand.Unless you have CFS no one can really relate how tiring it is to awake if your even able to have some sleep to an nother day of what next.My son who is going on 38 yet has suffered for years He gets so tired and angry that doctors ask the same questions over and over. Their clueless to this illness yet it is hard to help when its just plan and simple your sick and they don't know how to fix the immune system.The health care don't really understand the anguish one suffers.Mercy,no this disease has no mercy.Thank you very much for this heart felt and plain truth of how your rob of life.I shall share this letter with my son.Yet he will say so what is going to be done?Am hoping he will not feel so isolated. God Bless, A mom who understands yet feels sorrow for anyone with CFS.

For years, I've told peole I had Chronic Fatigue Syndrome only to have them look at me blankly (they'd never heard of it) or for them to say something like" oh, I feel tired often too." So, I now no longer use this name. I use the name that is used in the rest of the world: myalgic encephalomyelitus or ME. I now say something like : " I have a chronic illnes called ME; it affects all my body systems and has many symptoms similar to MS. Like MS, it causes brain lesions in many people. It also affects my cardiac function and my central nervous system so that, like MS patients, I get pain, numbness, and tingling."

I am finding that this type of explanation makes peole much more undertsandng of the fact that I have something serious. MS is an illness that most people have heard of; by comparing it to ME (accurately using the same symptoms) I help people realize that ME is also serious.

This will be VERY helpful for my boyfriend. He wants to learn more about FM/CFS/ME! Thank you!

I found a book by Starlanyl (1999) helpful. It's called "The Fibromyalgia Advocate". There are letters designed for just about anyone you can think of by someone that understands what we experience because she has FMS and MPS. I hope this helps!!

I like what you wrote from the FM point of view. Good writing!!

My name is Debbie and I am a caregiver and I am going to have to quit my job my boss does not understand how some days I can do everything great and then I have to call off. I have been there almost 8years and I love the lady I care for but I do everythingshower, hair, housework, meals,insulin shots,playing cards, helping with puzzles and there is not another caregiver to take my place,I am getting scared I hurt so much all the time... I also lost my son a year ago he was 19 and my very best friend, he would even bring me coffee in bed when I couldnt get up . I take pain pills and sleeping pills. My husband and my other son are great.I have had this FM since 1999 after being rearended while sitting in my car. I keep trying to keep my faith,The pain is getting the best of me.

To my darling husband,

Please understand that I am going through a horrible ordeal. I feel terrible about inflicting my illness on you. I know that you're affected by my changes, and I wish it were otherwise. I don't want to be ill.

I fell guilt about my inability to shoulder former responsibilities at work and home, dumping more on you. I wish I could do more or know in advance what I will be capable of each day. I worry that you think I'm lazy or trying to dodge responsibilities I dislike, but that's not it. Sometimes I just can't and other times I know it would be a mistake to use up all my energy on a minor thing and then have to give up something more important.

I want to know that I can trust you and that you will be available to listen and try to understand. And I'll try to understand that you can't always be available.

At times my feelings are irrational. My moods are erratic, and I get angry for no apparent reason, or way out of proportion to the trigger. This is part of my illness, and I'll try to keep it under control. I don't mean to direct the anger and frustration at you but I will sometimes fail. If my mood swings become too hard to take and you feel ready to explode, please tell me so, gently. Maybe one of us can leave the scene, and we can talk about it later when we're both calmer.

Sometimes I need to talk about these irrational feelings. Just listen, okay? Please don't tell me how to feel or how not to feel. You can't fix my feelings. Please don't judge them: just accept and acknowledge them. When you say such things as, "Your illness must be terribly frustrating for you," I feel understood and comforted. But don't tell me you know how I feel.

You don't and you can't no one can know exactly what this is like for me. And when I cry, don’t try to make me stop. Please let me cry I'll feel better later .I know I complain a lot. It helps to relieve tension. If my complaining strains your tolerance, please tell me so. I won't like hearing it and may not handle it well, but I really do understand that you need to distance yourself from my complaints.

I need to work at making clear requests so that you'll know what I need. It's not you job to mind read it's my responsibility to ask for what I want. This is difficult for me; it's easier for me to meet others' needs than to admit my own and ask for that they be met.

Don't try to talk me out of my symptoms ore remind me that they're not as bad as they could be or not as bad as they were. I know I need to stay hopeful, but if you take an optimistic role when I fell pessimistic, I fell as if you don't understand me and won't validate my feelings.

Don't give up your whole life for me. Please continue to do the things that are important

I gave this letter to him 2 yrs ago, and posted here on the message boards. I just printed it out again and will give it to him again, as he is getting frustraded with me since my car accident on 02/12/08. Since then I have been in so much pain, In a horribly flare, with Lupus flare, and multiple infections.

Thanks, Cin

Those are such awesome ways to explain fibro. I have printed them off and will give to family. So many people think you are just being lazy. I hear... "well you just need to make up your mind to get over it." Believe me, I don't want to feel this way. I have good days and when I have bad days, they are really bad. I was finally able to convince my dr to give me something to help on the bad days. Lyrica helps some, but on those days when you have "extra" pain and aches....I just need something. No one understands the fatigue and fibrofog. I just try to hang in there and come to this board and read encouraging messages from others. Thanks for the wonderful articles! Keep up the GREAT work.

I just received an E-mail from my son from a state business newspaper. It states that Lilly has justy come out stating that Cymbalta has been OK'd for FM treatment. He know I would be interested in it.

The letter to you husband, (already I have forgotten you name) hit home with me. I read parts to him just now. Never achknowledged any part of it except the portion ion anger, etc. he said maybe both of us should remember that. I said "NO, this is ab out FM. Remember that."

Why can't we win sometimes in trying to explain this awful condition?? My son and daughter do - other son doesn't take the time. Hubby just thinks of himself and his problems and granted, they are many. I am the caregiver for him and I begrudge gthe times when he gets angry over some stupid thing and I cry.

Thanks so much for letting me vent - you learned nothing from me but I learned a lot from you.

oh, the info my son sent does agree what many believe - a connection between brain and spine and feeling pain worse than other people do.

Gentle HUGS TO ALL.

Lilac

Thank you so much Sharon! I just had a discussion with my Mom and tried to explain what having these illnesses is like. I told her that the only people that could truly understand is others that have them. These letters you posted made me cry. I wish I could hand them out to everyone I ever see.

this is kevin carolineangel is my wife she has fibro. i just read some of the stories in the message board and it help me alot.thanks alot fron kevin
[This Message was Edited on 06/28/2008]

This is so well written. My partner was diagnosed with FM 3 months ago and is on 125 amyltriptolene, 1900 Gabapentin and 6 percs and still cries in pain. We couldnt get in to see another specialist for 2 months and she is at wits end. Do you have any medicine advise as we are going to see her current doctor in 1 week and something needs to change

I am new here, and that was put in a way just loved. Sheila

it is cortisol/too much of it. I have had CRPS/FIBRO for 21 years and now I am cured. I don't have thay anymore, now they have "CONCEDED" to Addison's/Cushing's. This was only after I diagnosed myself and insisted it be changed. They fought me everystep of the way - now I have pituitary tumors. They intentionally misdiagnosed me and deceived me. Please, help yourself. If you mention "Cortisol", they will immediately dismiss you. Try it. There is a cure for Fibro/CRPS, I am living proof and I have all 21 years of my "nightmare" documented/photos/recordings/original medical records

Thank you, Thank you, Thank you Sharon!

The letters explaining Fibromyalgia are exactly how I feel! You really hit the nail on the head. I have been trying to explain this to my husband for years, but he still doesn't understand. Maybe by reading some of these letters, he will now understand. My boss thinks it's a made up disease, but I know he will never read this. He thinks I'm just a complainer. Right now I'm struggling with depression. I just went off Cymbalta and Celexa, and I'm about to start Effexor. I hope it works. Nothing else has so far.

Thanks again. Keep up the good work.

Sue C.

I just had my husband highlight and print out the four, most informative explanations of what havoc fibro wreaks on our lives. Now, I need to try and figure out a way to get my husband and my own mother to sit down and read at least one of them!

The writing is perfect and it covers everything, from the guilt, the self blame, the pain to the isolation and loss we experience.

I have no doubt that it would be nearly impossible for anyone who did not have this DD to truly understand it. But for once in my life since this has taken over, I would give anything if just one person would at least try.

Thanks so much for this, to all who contributed. It says everything I needed said, only so much more eloquently. I notice on the second page here there is someone who posted that we CAN get better, we just have to want to. I wonder if they bothered to read what was posted here or not? Heck, it may have been one of my relatives who posted that! LOL!

I am just learning to cope with this illness..helped me a lot.

Dear Sharon,

My internist just told me I probably have fibro and then sent me to a rheumatologist.

She said that I probably have fibro, and then an autoimmune disease or more, and that the 25 vials of blood they proceeded to take would tell her which one(s) I have.

Your description(s) of fibro and lupus helped me to understand what I have been feeling. There were times when I thought that maybe I was losing my mind.

It was only after more than a year of constantly telling my internist how I felt that he proceeded to check my tender points. This is when he lowered the boom with one word, Fibromyalgia!

From doing research online I am finding out that I am not alone.

It would be wonderful if I could get my family to read the info posted on this message board. Maybe then they will truly be able to understand who I have become in the recent years. Many times I have had to push myself almost beyond the breaking point to do something that I had told them I would do.

Even my husband can't understand that I don't have "tomorrow" to do something, because tomorrow I may not feel as good as I do today.

I thank God that I found this website, and then the message board. Otherwise, I still would be trying to figure it out all on my own. And sometimes that just isn't possible because I can't think straight for many minutes at a time.

Great!! I sent it to a friend with FM.
[This Message was Edited on 08/01/2008]

I found a great book that explains it well. It is called "Parting the Fog". It does an amazing job of explaining a lot of fibromyalgia. It also has places where you can insert your own story at the end of each chapter. You can find this book on Amazon or in some bookstores. It is excellent!

Sharon, I absolutely GET your question - it is one of the biggest things in my life to be able to explain my illness to family and friends ["normals"].

This site had an article by Dr. Pelligrino called "Fibromyalgia - Ultimately a Disease of Amplified Pain"

Here is the link:
http://www.prohealth.com//library/showArticle.cfm?libid=13702

If your family/friends have just a slight bit of medical knowledge, they can understand this article.

For more depth, there is a Mayo Clinic article that Dr Pelligrino is referancing in his write up called something like "Sensory Processing Disorder"

Maybe that will help - one thing is just to get people thinking in different ways about pain, since "PAIN IS ALLWAYS AND ONLY IN THE BRAIN" - so it is both real and not really real... and requires some thought to wrap one's head around.

There are many spouses, friends, and family members of FM and/or CFS/ME patients who think the pain and suffering we endure is an attempt for their attention. Often times they don't realize that we suffer from a disease that is invisible; a disease that there is no cure for, and one that many in medical community are still unaware of. The pain is relentless, stealing our joy and replacing it with tears of sorrow, pain and frustration. On the outside we look like everyone else, but on the inside are the scars no one sees.

Yes, It's Real

Researchers have found evidence of distinct neurological abnormalities within the brain of CFS/ME patients. Other researchers have found elevated levels of spinal fluid substance P, a pain amplifier; along with lower levels of serotonin (a chemical messenger that transmits nerve signals between nerve cells), and low production of cortisol in FM patients. The American Medical Association (AMA), the World Health Organization (WHO), and the National Institutes of Health (NIH) are among those who have accepted FM and CFS/ME as legitimate physical conditions and as major causes of disability. This should prove without a shadow of a doubt that FM and CFS/ME are real, physical medical conditions, not a figment of our imaginations.

Background

FM and CFS/ME effect the person physically, emotionally, psychologically, spiritually and socially. The once energetic person is now replaced by a person dragging themselves through the day in agony. The once fun-loving person is now living in the depths of despair and depression. The person who once felt valued now feels as if life has passed them by. Even the most devout begin to question why they must endure such pain, fatigue and misery. But the worst part of all is the misunderstanding, mistrust, and general ambivalence towards our pain and suffering. Our lives as we knew them are over. We are no longer able to have fruitful careers, manage our homes, or even take care of our children properly. Now the simplest activities are fraught with pain and agony.

Currently

Before we became ill we were organized perfectionists who were incredibly productive. Everything in our lives had its place; it kills us that it's not that way now. People with FM and CFS/ME live their days moment to moment, not able to plan for tomorrow let alone next week. We never know when a sudden flare will send us into a world of pain and agony. Many times we can't even think of the words we need to finish a sentence, making us seem demented or deranged in the eyes of others.

When was the last time you were in agony, yet unable to find a comfortable position? Or when was the last time the medicine you took made you so sick you couldn't leave the bathroom? People who live day to day with a chronic illness such as FM or CFS/ME need your help and support in order to cope with their condition. We need to know you care about us, and that you support us emotionally and physically. Deep inside every person with FM and CFS/ME is someone screaming to be loved, helped, supported and understood. Your loved one with FM and/or CFS/ME needs you now more than ever. Please don't let them down!

I've lived with FM and CFS/ME for 30 years. I wrote this letter for the visitors to my website (one devoted to information and resources for people with FM and CFS/ME), to give them a voice. I hope it helps you.

Best Wishes,

Misty Roberts

This is my first day on the message boards. I can't begin to tell you how much this site is helping me. I was recently diagnosed with FM. At first I thought maybe my doc had made a mistake because I had so many different symptoms. But after reading many of these posts I am certain he was correct. I am almost in tears because I felt so many times I was in this alone. I have never known anyone with this disease or knew much about it. I am getting a crash course now. I have printed off your description of FM and am making copies for my friends and family. None of them have any idea what I am experiencing. My daughter was so uninformed she said she thought it was one of those disease that was "all in your head". Now I know I am not crazy. My doc had already told me that but you understand. Can anyone tell me how to print just 1 message or send the link for 1 message to a family member? I am so glad I found this site. I will definitely be back.

[This Message was Edited on 10/13/2008]

First of all - a big thank you for describing what I could not. I have printed this out to give to my family, friends and co-workers - I think it gives some insite to what is happening with me. Just was diagnosed Oct 29, 08. I guess I am still trying to deal with the whole overwhelming process.

Thanks again. Daisy

But jealouse to.

Hi my name is Abby I'm a 18 year old girl. And I have FM & CFS & SLE

It had been 3 years of wondering why I felt so bad all the time after test after test hospital after hospital doctor after doctor. I finally knew what was wrong my doctor came into the room and Said, "I'm going to tell you something I'm sure you have waited a long time to hear, We know whats wrong and know how to teat it but it's going to be hard at times, but there is no worry we are going to keep trying." I was told that I had Fibromyalgia, Chronic fatguie syndrom and Systemic Lupus. I cried if front of the doctor and my mom just held me and cried. We knew it was going to be hard. even know it's hard what kills me the most is I can't go to school full time due to this. I am losing hope on my dream of becoming a Orchestra Director and Composer. It's really good to know I'm not alone. Thanks everyone my deepest blessings.
Abby

Sharon -

I have been reading your information and am appreciative that you share so much of yourself.

I am new to the boards but was diagnosed seven years ago and have been very active in reasearching every possible way to help myself.

I am fortunate that I had a doctor who knew immediately what was wrong and I also have a very understanding family.

I will post more about my experiences as we go along and will share information that I have found that helps me.

i have moved no one understands or tries to..... feel very alone

[This Message was Edited on 10/27/2008]

If you just want to send one of the messages, I would copy and paste into an email for your recipient.

To print, just copy and paste the message into word, save the document and send to your printer.

Hello everyone,

I posted this on a few groups on Facebook, and a few people found it helpful!

I wrote this a month before my 4 year anniversary as I felt like I needed to...I just wanted to share it with you.
N.B. the comparison I make here to abusive relationships is not to belittle anyone going through that experience. It's just my feelings and my perceptions to do with my illness.


For four years I’ve been suffering with Myalgic encephalomyelitis (M.E.) and for four years I’ve been trying to describe it to non-sufferers. I’ve compared it to a permanent flu, to a never-ending marathon, to insomnia with eventual pointless sleep.
Now that it’s been part of me for so long, I realised how I could get the point across. I’ve not only been living with it, I’ve been battling with it.
The only thing I can think to compare to, is living with an abusive and unpredictable partner.

He tells me what I spend my day doing.
He makes me cancel on friends, and cancel appointments.
He decides whether I can read a book, or listen to music.
He gives me false hope; lets me think that I can achieve an unprecedented step forward, then pulls me back down to his level.
He tells me what I can eat and drink.
He’s indecisive, sometimes he lets me do something then changes his mind midway.
He plays tricks on me, and punishes me when I read his mood incorrectly.
He makes me feel sick in the same day that he let me be happy.
He controls how long I sleep, or if I’m allowed to sleep at all.
He makes me feel weak, when inside I know I'm strong.
He makes me feel pain for no reason.
He makes me afraid of what will happen if I defy him.
He knows I dream of leaving him, and reminds me that I’m foolish for doing so.

But what I don’t let him know, is that I will one day be free of him, and that his power over me will slowly diminish.

M.E. is a hugely complicated illness, and like abusive people, each form has it’s own tricks and tortures. It lets you appear capable and healthy but inside you’re constantly physically and mentally exhausted. Remember, next time you see a sufferer, that in energy terms, he or she may have just climbed a mountain. But all they’ve done is sat and smiled at you. That’s what M.E. does.
It fools the body into thinking that it’s just run a marathon, climbed a mountain, built a house, gone a week without sleep, but all it’s actually done is made lunch.
When a sufferer tells you he or she is a little tired, they sometimes mean is they are so exhausted they could weep. It’s a trickster, that sleep won’t stop. Whether it’s got you in a weak or strong hold, it’s still powerful.
So please, when you see your sufferer friend, remember that they are fighting a constant battle with their oppressor. If you can’t imagine it yourself, don’t try. Just support them. They’ll need it.

Hello,

Well, heres what happened with me. I spent about 20 years dealing with CFS, Add, Ibs, Anxiousness and at times Acid reflux. It came and went for many years but as time passed I reached a point where I had to deal with it all daily. During all those years I was searching for answers as to what the ROOT of the problem might be to all this suffering. I spent mega bucks on tests medications and natural remedies all to come up empty handed but eventually found what I needed to get me out of this horrible situation. I had heard about a condition called Leaky Gut and started researching it. I found out that by having a compromised Gut you could end up with food intolerance which lead to inflammation in the entire body, gut and throat....creating acid reflux. I found ThinkRite system that believed in Leaky Gut and offered blood testing for food intolerance and I took their blood test. It came out positive finding I had several foods of which I was intolerant to. I removed the offending foods and after about 6 months all of my aliments left including my CFS (of which was my worst aliment). I found that the intolerant foods were causing inflammation in my system because with a Leaky Gut whole food particles escape through your gut lining and weather it is a healthy food or not the immune system notify the brain that a foreign invader has entered the blood stream undigested. Even healthy foods undigested entering the bloodstream are deemed as a poison because it has not been properly prepared and broken down for the body to use it for nutrition. There is much more to be said about this condition and the info can be found with this company but in a nutshell....after all of these years of suffering....the pain is gone...not sort of gone but ALL gone....and to prove that the testing was for real all I have to do is go back and eat the foods that came up positive and the symptoms come right back within a few days. I now feel great!...Hope this helps.

FM/CFS Network has a very helpful newsletter and e-letters that give good suggestions. There is a membership fee, but I just treat it as a medical expense. I'd give you the tips, but...I can't remember them!

Hello to all,

Some of these letters are great, but the majority of them appear to address mainly dealing with fibromyalgia.

Does anyone have tips/advice for explaining what it's like to live with ME/CFS? I'm trying to put it in a letter as concisely as possible.

Thanks,

Dan

...for more suggestions on letters explaining what it's like to have ME/CFS...

???

This is really excellent, Sharon. Thank you!

and this is a great one.
I will send this explaination to my family. It hits it right on the head.
Oh, sorry, who needs more pain LOL.

Barbara

This is a wonderful topic, Sharon..thank you! My husband has always told me he understands, but I know he really doesn't. These letters will help tremendously..I am going to give them to all my family members and my friends.

Sandy

I have just been diagnosed with this disease!!! THIS WAS SO PERFECT! It made it so easy for me to explain it to my family!!! Thank you so much. I was in a car accident in December 2007 while I was 10 weeks pregnant. There was a chance i might have miscarried. Thankfully he is here and 7 months old and healthy. With this message its like you read my mind THANK YOU THANK YOU THANK YOU!!

Kristen Knight!!

Hello,
This is what I tell people who ask about what FMS is:
I tell them it's like having the bad case of the flu without the vomiting and bowel problems. You just fill achy and/or in pain. But it's a daily thing. With the Cronic Fatigue I explain that it's like having a chargable battery inside but no matter what you do it never seems to fully charge. Once you've used that energy, that's it. It takes a long while to build just a little bit of the juice back up again, and it never gets full.

Most people get the idea. When they don't, like some of my old co-workers I just tell them that I have a disorder that you may not understand so don't tease me and put me down, just respect me for the work I do, and I am only human.

I have been told I have epstein barr syndrome along with CFS I an new and accidently found this website and I am so glad that I did. I have been sick for almost 25 yrs now I turned 50 In January.I am always tired so tired I wake up feeling like I haven;t slept but now that I have read so many post on here I don't feel so all alone. The reason I said i was frustrated is after being referred out to a Infectious Disease specialist and my hubby went with me to see her she says I am well. That most people have CFS and they are just fine. I will not die from it and just stop worrying so much about it get into physical theraphy and get stronger cause you are not sick. I left there feeling so let down and now my husband feels like I just need to go to theaphy and get back some strength and I will be well and wants me to stop using being tired as an excuse not to do things...like i wake up most mornings at 3 a.m. and can't sleep by the time it is time to cook dinner i am just to tired sometimes and weak to do it and now i think he thinks i am just lazy and dont want to do the things i need to do. Please any posts that anyone could post that I could let him read and maybe understand that I am sick and have a Chronic disease that there is no cure for he will understand it better. The doctor told him he was a smart man by saying that i needed to get out more and walk farther and exercise.
I am at a lose for what to do..
Thanks for listening
Pam

FM is a silent and slow killer. It starts to work inside slowly to take away all your hopes and dreams. This debilitating condition challenges our will to survive. I don't know if I want to live like this anymore. I don't see any point in suffering so much for so many years and not knowing if I will ever get better...

I haven't been diagnosed but feel so like I am defective because all these other moms run around and work and I don't work I used to part time but that was just too much and then even running around with my kids just fatigues me so much that I have to say just go away and I feel really bad but feel so tired and ill. I'll sit on my bed and do things with the kids on bad days with my heating pad or cold pack just to interact with them but they want the run around the yard play football baseball and I used to be able to do that. The medications wellbutrin and clonapin help because it seems everything stresses me out. I let my kids go over other kids houses because its overwhelming its just a terrible feeling. and yes people in your family not my husband or kids but inlaws or brothers feel its your lazy lack of motivation. I have alot of enthusiasm but it feels it gets zapped..just like that. What can I tell my Obgyn to have her test me or help treat me? I am 38 and my body feels like 60....

I've wondered sometimes if it's worth it to try to explain CFS to people. I feel like I've been misunderstood whether I try to explain it or not. So, why use up precious energy trying to explain?

Nevertheless, there are people who are truly interested and they are willing to listen. What a great gift of compassion?!

I think it's important to try to help people understand and educate them to the illness if at all possible. It may help the next person they meet with a concealed illness. We have to speak up when the opportunity arises so that people understand there's more than one or two of us with "this stuff".

Sometimes I tell people that just like every one has a thumb most people with CFS share 3 or 4 main symptoms (fatigue, body ache, cognitive disturbances, and usually frequent headaches), then like each us has a thumbprint that is unique we each have symptoms that come in unique combinations (chronic sore throats, low-grade fever, gastrointestinal problems, sensitivity to extreme heat or cold, etc.). The main thing is trying to explain what chronic fatigue FEELS like, and trying to help people understand that they may feel tired, too, but ours is CHRONIC and it affects our lives everyday.

If people want to understand they will, if they don't have compassion in their hearts they will simply turn away. The only thing we can do is work together to help people understand this is real. There are hundreds of thousands of us in the world living with this. It's highly unlikely that we are ALL faking a devastating illness.

You might want to view the Centers for Disease Control website to see the criteria required for a diagnosis of CFS/ME or fibromyalgia. Most ordinary bloodwork will come back normal.

I had no luck getting a diagnosis from my family doctor or a rheumatologist. I found a D.O. (Doctor of Osteopathy) through a now-defunct CFIDS support group and finally got a diagnosis after more than 2 years of ME/CFS, FMS etc.

I have been ill since '99 and have had some remissions in symptoms with the nutritional and other treatments offered by my D.O.

Best wishes to you in your search for answers.

I'm sending a major shout out of appreciation to all those who wrote in with definitions of this dd. I made copies to give to several friends and family members. It has actually made a slight difference in the way a few people treat me now. Thank you forever, Lisa

Have you seen the spoon theory online? Look it up and read the story. I printed and emailed it to everyone in family who needed it. "But you don't look sick....."

the sad thing is I think I have had this for many years before diagnoses,Id get symptoms that didnt see to go together.My husband and family didnt understand,since I did not look sick,I was lazy or depression,of coursee I"m sure you know that.My lower back and hips are hurting and my right knee hardly lets me walk.Then my hubbies sister and her two daughters got it,now he believes,wspecially since I think he has it too.forgive my typing.I hope you get all the help you need.Sno

Hi my name is carole, I have had fibro since 1997, and suffered pain and too many other symptoms to go into here. I never gave up on finding an answer for me, because I just could not get get through my head that I would spend the rest of my life this way. I ordered the supplements, read all the books, took all the meds, did what the doctors said to do, and you all know how much good that all has done. On one of my health news letters I found a link to a site that went into some ideas about CFS/FM that I had not understood before. It was simple and no constant ordering of supplements or complicated things that never work anyway. It's called TheME/CFS&FMS Advanced Recovery Programme. Maybe not for every one but after six months I can now say I have control of my symptoms. Having the tools to help myself is such a great thing because I am an independent person and at 68 years old I am still going strong and want to keep it that way.

I have had many of these symptoms for many years.
I know most of my family think I am lazy .And now being distant because I don't spend the time with them like I used to. They don't understand I am not the same person I used to be...
Even writing this is hard I am forever hitting the wrong keys on this keyboard, I know which ones I want to hit but my fingers hit the one next to it, so I have to take extra time to backspace and redo. Even this is exhausting and frustrating.
Anyway I hope reading some of your blogs will explain what I'm going through .

Thank you,
Jean

My rheumatologist thinks I have Fibro and sent me back to my general doc.. He wants to be safe and send me to a Neurologist to make sure it's not MS or something similar.

This is so scary!

Helped me years ago, edited to suit my needs .
IF I could get close ones to read it.

Hi,
If you go to the NFA website, www.fmaware.org, click on Community and get professional information. This website is chock-full of info regarding explanations for FM. Also, WebMD and Mayo Clinic are also excellent resources.
Good luck and Good Health,
Sharon

Hi.. I'm new around here. I was standing outside on the porch looking for comfort in my Bible because I couldn't sit or lay down the pains so bad.. I came into the computer to sit for a minute because I couldn't stand any longer and I found this site. I'm glad I signed up. For the last month and a half the fibro has been at it's worst. I look at my 13 month old son and wonder how I'm going to keep up with him... I'm so tired of asking my husband for help with seemingly small tasks and trying to explain to people, and even myself... I just want to be normal. Heck, I'd take semi-normal.. I just need the pain to stop for a while... or at least tone down. Anyway.. I don't mean to ramble. Your post made me cry and I wanted to thank someone.. just for understanding.

WOW!! I am new here also and suffering from fibro. These posts are amazing........I will definately be printing these and giving them because it is so difficult to explain about this terrible fibro and ALL of it's symptoms, there are so many issues to this evilness. Thank you so much again and God Bless you all. Love, Jacquelina

I was recently diagnosed with FM, and from the minute I read this, I couldn't help but cry. I try so hard not to complain about the pain, some days are easier than others. My husband says he understands (God bless him, he is patient), but you never know what it is like until it is you that is going through it. I find myself everyday becoming more and more depressed. I can't work because it hurts to badly, and I hate laying around the house all day watching the dishes not being done, not being able to play with my dogs, or even give my wonderful husband who is in the Air Force a massage after he's had a long hard day. I haven't found anyone who understands, and apparently I'm moody???? I sometimes don't even realize I'm doing this... OH the wonderful FM symtoms!!! Trying to find ways to deal :(

Even though I've explained FM several times, it's always good to find new ways. Especially when you have to explain it to the same person several times over. My mother always says she understands, then follows it up with "but everyone feels like that when they're starting menopause." So, I guess I've been "starting" menopause for the 15 years (I'm 44 now). On the other hand, when I started the fight for disability, my husband gave the explanation his best shot (he's not very good at it) when his grandmother asked what was going on. That was probably a good thing. She thought I didn't like their family and wasn't coming to the family events all the time because of that.

Terri,
Thank you so much for the perfect explanation to what we have. I hope you don't mind, but I copied and pasted your letter and emailed it to all my family and close friends. I also printed a copy and gave it to my b/f. Hopefully after they read it they will understand a little better.
Thanks again,
Patti

wonderful if anyone cares for you or honestly takes you seriously

can ya tell Im a little bitter??

Hi cockatoomom, i really envy you,,i wish i had someone in mylife who loved me enough to find out about FMS and try to help and support me. guess i'm feeling really depressed and alone right now. Debbie

Hi cockatoomom, i really envy you,,i wish i had someone in mylife who loved me enough to find out about FMS and try to help and support me. guess i'm feeling really depressed and alone right now. Debbie

for the fibro introduction letters.

Thee

Please check out the following video site: ABC News Network interviewed a doctor in regards to CFS:

http://abcnews.go.com/video/playerindex?id=8664151

Microwave Sickness may eventually explain FM and CFS. You might want to check this thread out - lots of information on the possible connection and mechanisms of connection...

http://www.prohealth.com/blog/boardDetail.cfm?id=6203&setboard=Health&CFID=98803207&CFTOKEN=21897955

I also found this link...

Do you have Microwave/EMR Sickness?

http://www.energystore.biz/index_files/microwavesickness.htm

[This Message was Edited on 10/19/2009]

Thank you so much for this! It really helps me to explain. I have printed it off and I am going to have all of my family read it and sign the bottom showing that they read it.

Julie

fms-help.com/trying.htm

google the spoon theory

and so you dont look sick

God Bless
LaDonna:)

I'm a physician that came down with cfs in 2006. I've done extensive research on this. Unfortunately, as a medical community, we still don't know the exact cause and treatment of this devastated syndrome.

The main factor with this syndrome is hypersensitivity of the brain (feeling wired and subsequent fatigue). The brain needs to be "calmed" down. Therefore, the treatment needs to base on this concept. Dr. Paul Chaney, a well-known physician to all cfs sufferers, was the first to recognize this. The medicine that is best to accomplish this is benzodiazepine. Dr. Chaney recommends Klonopin. I take sustained released alprazolam (Zanax). The dosage varies depending on the severity of the illness.

I realize that benzodiazepines are considered as potentially addictive and therefore portray as a "stay away" medicine, especially by physicians. This is very unfortunate - Do we consider anticonvulsant medicine as addictive for patients with seizures or insulin as addictive for diabetics. Based on my own experience, this class of medicince, saved me. It doesn't cure the illness. But it helps me to be functional. I'm actually able to taper the dose through the years. Hopefully, some day I don't need it at all. But for now, until there's a cure, this is most effective.

I hope that you can find a physician in your area that's willing to do this. You may have to print the article from Dr. Paul Cheney to help convince your doctor (http://www.dfwcfids.org/medical/klonopin.html).

I will share more with my experience periodically.

cfs106

I just read through all of the descriptions everyone posted here, and I'm crying. What great explanations!

I'm wondering though if anyone has any advice for talking to children. The letters here all seem a little too much for me to use to explain my condition to my children (age 9, 11, and 14). I was just diagnosed a few days ago, and I haven't been able to talk to my kids about this yet. For a while now I've been using the explanation that I'm "not feeling well" or "not feeling up to it", and I know that they've had a hard time with it because they can't "see" what's wrong with mom, and I haven't been able to do so much that I was before. I'm divorced, so I don't have another adult in the house to pick up the slack, and my condition has effected everyone. Now that I have a diagnosis, I'd like to try to explain to them, but I keep coming up empty for an explanation.

The best description I have ever heard is found through a ABC new cast. The link: http://abcnews.go.com/video/playerIndex?id=8664151

The very first letter on here I copied off. I made 2 copies, one for each of my 2 coffee friends, hoping that I could explain it. The next day after the one had read it, she wouldn't speak to me and that has been 5-6 yrs. ago. She still won't speak - I guess she thinks that my illness is all in my head. I use a cane most of the time and a walker with a seat sometimes at home.

My sweetheart of 59 1/2 yrs. passed away in May and my crying is mostly from lonliness and longing for him. i know he is in a better place but i still miss him. I'm alone now with my cat, Maggie.

My lady pastor also goes along with this friend and h ardly speaks. I have been going to a daily coffee for about 30-some yrs. The gal and pastor are both in it. I have days when no one will listen to me or talk to me ---why? because they have been informed thtat is is all in may head. my kids don't say that awful word----"fibro".

My hands tingle now, my skin hurt so much before i went to bed last evening, my back hurts so much, I can't remember names like I used to which is embarassing when trhying to tell someone something. Sometimes my scalp hurts, my toes go to sleep and tingle,----all those things that all of you above have written about.

But today rather set me to thinking. One of our dear friends has children that mine grew up with. the youngest, 47, got severaly ill last Sat., was transferred to Chicago with bile duct cancer, a rare one with only 2 in 100,000 cancer cases occuring. He had surgery today, and it was found that it consumed the liver. Prognosis~~~~~~3 mon. to 1 yr.
Things can always be worse that mine.

Gentle Hugs,

Lilac

The following letter is from the website fibromyalgiaexperiment.com

I really like it and I'm hoping Sarakastic will join our community at fibrofreelife.com. Hope you like it.

"If I hesitate when you ask me to perform a simple task like going shopping with you, there is a reason. If you ask me to go do something social and I say no there is probably a reason. It’s not that I don’t like you, it just costs too much. I’m not even talking about monetary amounts. It just upsets the careful balance of my life in a very real way.

First off, spending times in large crowds is rarely fun for me. I have to wear shoes, that hurts. Then I have to stand up for a long time, that hurts. This means that the next day I’ll probably be really sick, maybe even too sick to work. Then I’ll have to spend the rest of the weekend trying to catch up on work which will just make the fiber flare angrier. So thank you for asking, but please understand if I say no.

Sincerely,

Sarakastic"