I am looking for a letter that speaks of having fibro and goes on to put a voice to fibro. I have a friend who really could use it to better understand what her daughter is going through.

I sure hope someone can help. I read it on this site about 1 year ago.

Thanks,

Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibro though they might have wished they could on really awful days. I can't control how often I feel good or how often I feel terrible. If you want to read articles about fibro I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibro and that I have it. This may sound simple, but when you hear about some of the symptoms I don't want you to think I am making this up.

Fibro is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Sometimes I can take a lot of medication and still not feel any better. That's just the way it goes.

There's no cure for fibro, it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better, because I suffer from chronic pain and fatigue for which there is no cure. I can have good days, weeks, or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I may get more irritable before these flares, and suddenly get more sensitive to noise, or just collapse from deadening fatigue. Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen, because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry.

Fibromayalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it is jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have them for pain. Sometimes it just hurts all over.

Besides pain we have muscle stiffness, which is worse in the mornings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may ask you to pull me up. I'm creaky and I'm clutzy. I trip over things no one can see, and I bump into the person I'm walking with and I drop things and spill things because my finders are stiff or my coordination is off. I just don't seem to connect the way I shoud. Hand-eye coordiation; it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall.

Because I feel badly most of the time I am always pushing myself and sometimes I push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special, but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms, are invisible but they are there.

Another symptom I have is problems with memory and concentration, which is called fibrofog. Short-term memory is the worst! I am constantly looking for things I have no idea where I put, I walk into rooms and have no idea why. Casualties are my keys, which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things I'm still liable to forget them. Don't worry, this is normal for fibros - most of us are fightened that we are getting Alzheimer's.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. To noise, especially certain sounds like the television, or shrill noises. Too bright lights, to fluorescent lights. To smells like fish or some chemicals, or fragrance or perfume. I also have a problem with heat and with cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They strees me out and make my pain worse, and I get exhausted. Sometimes I just need to get away from something, I just don't know how to say it. I know that sometimes this means I will have to go outside, or out to the car, or home to sit alone, and that's really all right. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just best to let me be.

I have problmes sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours. I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemicals in my brain can make me depressed, as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm so grateful. I can't always admit it at the time, but I'm admitting it now.

I have other symptoms like irritable bowel and pelvic pain that will take their toll on our physical intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It is very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you. I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not show it always, I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

Here is another;

Letter to my "Normal" friends and family

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 that 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.

Here is another open letter;

http://www.fms-help.com/healthy.htm

Cindy