From http://www.fmscommunity.org/lettertonormals.htm
There are the things I would like you to understand before you judge me...
Please know that being sick doesn't mean I'm not human. I may spend most of my day flat on my back and I might not seem like great company, but I'm still me stuck inside this body. I worry about school, work, family and friends and I'd still like to hear about yours.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable but it will pass. I've been sick for for so long that I can't afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I'm happy, it does not mean that I am well. I may be in pain and 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 mean that I can stand ten minutes, or an hour. It's likely 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, but with Fibromyalgia 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, and the next I'll struggle to reach 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 worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or 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, 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 every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.
If you read this and still want to suggest a cure, submit it in writing but don't expect me to rush out and try it. If it is something new, with merit, I'll discuss it with my doctor.
Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.
I depend on you - people who are not sick for many things but most importantly, I need you to understand me.
Taken with permission from http://www.fmscommunity.org/lettertonormals.htm
Links to pages about fibromyalgia:
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Fibromyalgia
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What is fibro?
Fibromyalgia is defined by chronic widespread muscular pain and symptoms such as fatigue, sleep disturbances, stiffness, cognitive and memory problems, and symptoms of depression and anxiety. More localized pain conditions often occur in patients with fibromyalgia, including migraine or tension headaches, temporomandibular disorder, irritable bowel syndrome, gastroesophageal reflux disorder, irritable bladder, and pelvic pain syndromes. The symptoms of fibromyalgia and associated conditions can vary in intensity and wax and wane over time. Stress often worsens these symptoms.
What causes fibro?
Researchers have been unable to determine the exact cause of fibromyalgia; however, there are a number of theories as to the possible cause.
Neurochemical Imbalances:
It is believed that there is a faulty regulation of two neurochemicals of the central nervous system, namely substance P and serotonin. Substance P is a chemical that is responsible for amplifying pain signals in the body. Research has shown that some people with fibromyalgia have up to three times the normal level of substance P compared to someone who does not have fibromyalgia. This may lead to errors in pain processing. An example is when something that should not be painful, such as a hug or pat on the back, is perceived by your body as being painful. It's not that you cannot tolerate pain, but rather that your body is sensing more pain than it actually should be.
Serotonin is a chemical that is important for mood, sleep and pain. Researchers believe that serotonin is either in lower than normal amounts or is not being used properly by the body in people with fibromyalgia.
Autonomic Nervous System Stress Response (HPA axis):
The autonomic nervous system is that mechanism in the body that helps regulate all the "automatic functions," such as heart rate, breathing, blood pressure and digestion. The autonomic nervous system also is responsible for controlling the stress response, often referred to as our "fight or flight" response.
During a time of stress, the body secretes chemicals, such as adrenaline and cortisol, which help you remain alert in a time of stress to be able to deal with the stressor or escape it. Think of a time when you have been faced with a stressor. How did your body respond to that stress? Did you have an increased heart rate, fast and shallow breathing or did you forget' to breathe? Were your palms sweaty or did your stomach feel nauseous? These are just a few of the symptoms that can occur under a time of stress.
Researchers have found that people with fibromyalgia either tend to run at a slightly higher than normal level of stress or may take a little longer to recover from a stressful event. You may not feel as though you are in a stressful situation. Dealing with chronic pain and fatigue on a daily basis, however, certainly is stressful. This ongoing stress can lead to changes in the brain that alter the way pain signals are processed, leading to increased sensitivity. Symptoms from stress can exaggerate the fibromyalgia symptoms. That is why stress management is a very important key in managing fibromyalgia symptoms.
Sleep Problems:
Proper sleep is necessary to provide healing of the body as well as mental clarity and physical endurance. There are two very important types of sleep called NREM and REM. NREM stands for non-rapid eye movement sleep, or non-dream sleep, and is important for physical recovery of the body. There are several stages of NREM sleep with the deeper stages numbered 3 and 4, also known as delta sleep. REM sleep stands for rapid eye movement sleep, which is when dreams occur, and is important for our mental recovery.
About 90% of people with fibromyalgia do not get into the deep restorative NREM sleep stages 3 and 4. It is during this "delta" sleep that the body secretes a growth hormone called somatomedin C. This chemical is important in adults because it is responsible for directing the repair of muscles. People normally experience micro muscle trauma just from moving around during the day. Muscle is normally restored with the help of somatomedin C secreted in the proper amounts. Your body secretes adequate amounts of growth hormone by getting into the deep stages of sleep. Imagine never getting enough somatomedin C to repair the daily micro muscle trauma caused by daily life.
Genetics:
Researchers are continuing to study the possible role genetics may play in fibromyalgia.
What is a spoonie?
