One of the most frustrating things about FM is that while you look fine - alert, normal complexion, no fever, weight normal or even gaining, etc, you are tired ALL the time, often even exhausted just from getting out of bed and dressed. You are in pain, sometimes so bad you don’t even tolerate rough or tight clothing.

People see you and have certain expectations, that you cannot live up to, and they make you feel like you are letting them down because you are not able to do what they want. Others will be frustrated, disappointed in you, hurt, even angry. They will say you’re just faking, lazy, a wimp, making excuses, or are a hypochondriac.

So how do you deal with this? The only way to effect how others see you is through education. Talk to your Dr., ask him for pamphlets that explain your condition. Join both local and online support groups. They will have a wealth of information, including printable explanations for your family, friends and employers.

I recommend Fibromyalgia-CFS, a support group on Yahoo. It can be found at this URL:

www.health.groups.yahoo.com/group/Fibromyalgia-CFS

Here is one of the files, a letter actually written by me:

Hello _______, I am writing you because your name was supplied as being a close family member and part of the support network of one of our fibromyalgia patient members. We send out this information as a service to you, so that you can better understand what your loved one is going through. This e-mail is a little long, but please read through the whole thing. My name is Sage. An FM patient myself, I became disabled by the pain, fatigue and mental fog over three years ago. I have since become active in the advocacy for FM patients, being a registered advocate with the National Arthritis Foundation, The American Rheumatology Foundation, and the National Fibromyalgia Foundations. I also co-own and manage a support group online with over 1440 members who are FM patients. Prior to developing FM, I was a successful residential contractor, with 12 full time employees. Being a hands on kind of person, I was on the job from well before sun up till the wee hours of the morning. For years, I thought that the aches, pains, and fatigue, the constant upset stomach were just the natural result of long hours and high stress. As the symptoms became worse, I began searching for answers from the medical profession. After several years I was finally diagnosed with fibromyalgia, chronic fatigue immune dysfunction syndrome, Irritable bowel syndrome, restless leg syndrome, Reynauds phenomenon, and recurrent seizure disorder. As the fatigue and mental fog grew worse, I was forced to give up my business and work for other contractors, then eventually to give up contracting in favor of a less physically demanding job traffic control flagging. almost three years ago I was forced to accept that I could no longer safely do this either. Now I have to fill the need to contribute when I have the energy and clear headedness to function online, sporadic as that might be. I live on welfare, while I pursue a Social Security Disability claim. I have copied fliers and websites into an e-mail friendly form (with all necessary permissions) from nationally recognized organizations dedicated to education about and advocacy for FM. Here is the information I wrote you about. Copied from Dr Nye's web page: Fibromyalgia -- A Guide for Patients David Nye, MD Neurology Dept., Midelfort Clinic, Eau Claire, Wisconsin Last Updated December 3, 1998 What is fibromyalgia? Fibromyalgia is a common and disabling disorder affecting 2-4% of the population, women more often than men. Despite the condition's frequency, the diagnosis is often missed. Patients with fibromyalgia usually ache all over, sleep poorly, are stiff on waking, and are tired all day. They are prone to headaches, memory and concentration problems, dizziness, numbness and tingling, itching, fluid retention, crampy abdominal or pelvic pain and diarrhea, and several other symptoms. There are no diagnostic lab or x-ray abnormalities, but a physician can confirm the diagnosis by finding tender points in characteristic locations. Fibromyalgia often runs in families, suggesting an inherited predisposition. It may lie dormant until triggered by an infection, injury, stress, or sleep disturbance. It is closely related to the chronic fatigue and irritable bowel syndromes and to migraines. Some have suggested that these are all just different facets of the same underlying disorder. -------------------------------------------------------------------------------- What causes it? Fibromyalgia was once thought to be an inflammatory condition and later a psychiatric one, but neither of these causes now appears likely. No good evidence of inflammation or arthritis has been found. When depression and anxiety occur they are more often the result than the cause of fibromyalgia. Patients with fibromyalgia are no more likely to be depressed than patients with other chronic painful disorders like rheumatoid arthritis. Spinal fluid levels four times normal of the pain neurotransmitter substance P suggests that the pain is not imaginary. We still do not know exactly what causes fibromyalgia, but we know much more than we did a few years ago. Several good theories have been proposed and much scientific data gathered. One leading theory links fibromyalgia with an abnormality of deep sleep. Fibromyalgia patients often note that not getting enough sleep or even just staying up an hour late makes their fibromyalgia symptoms worse the next day. Abnormal brain waveforms have been found in deep sleep in many patients with fibromyalgia. Fibromyalgia-like symptoms and tender points can be produced in normal volunteers by depriving them of deep sleep for a few days. Low levels of growth hormone, important in maintaining good muscle and other soft tissue health, have been found in-patients with fibromyalgia. This hormone is produced almost exclusively in deep sleep, and its production is increased by exercise. Daily exercise has been found to be an important part of treatment of fibromyalgia along with steps taken to improve sleep. Fibromyalgia is also associated with certain immune system changes. These do not appear to be of the autoimmune kind seen in disorders like multiple sclerosis or rheumatoid arthritis, but rather the immune system appears as if fighting a virus. No virus has been convincingly demonstrated, and the fact that fibromyalgia does not appear to be contagious (for example, it is no more common in spouses of affected patients than in the general population) argues against an infectious cause. Experimental disturbance of deep sleep in normal volunteers causes similar immune system changes, suggesting that the immune system changes may be secondary to the sleep disorder. Levels of certain cytokines, a class of immune system hormones, are elevated in fibromyalgia. When these same cytokines are given to patients to treat other disorders, fibromyalgia-like side effects are common. Taken together, these findings suggest that fibromyalgia symptoms may be caused by elevated levels of certain cytokines produced by an immune system that is not functioning normally because of a chronic sleep disorder. This explanation is by no means proven, and several other good theories exist. Neurotransmitter and endocrine changes occur in fibromyalgia, particularly involving serotonin and the pituitary-adrenal axis, but as these same changes can also be produced by experimental deep sleep deprivation, they are probably secondary rather than primary. They may account for some fibromyalgia symptoms, however. Depression and migraine headaches are associated with low serotonin levels, for example, and often respond to medications that boost serotonin. -------------------------------------------------------------------------------- How is it treated? With: Medication to improve deep sleep. Regular sleep hours and an adequate amount of sleep. Daily gentle aerobic exercise and stretching. Avoidance of overexertion and stress. Treatment of any coexisting sleep disorders. Patient education. Medication by itself is of little value in treating fibromyalgia. Successful treatment demands the patient's active involvement in treatment as well as lifestyle changes. Each of the six parts of treatment above is important. If any one is omitted, the chance of significant improvement is considerably reduced. -------------------------------------------------------------------------------- Medications A number of medications have been used to improve sleep in fibromyalgia. The oldest of these is amitriptyline (Elavil), a medication first used to treat depression. Amitriptyline and related medications probably work by improving the quality and depth of deep sleep rather than by any effect on mood. Although it seems to work as well as any of the other medications, amitriptyline causes frequent bothersome side effects such as weight gain, dry mouth, daytime tiredness, and trouble concentrating more often than other medications with durations of action more appropriate for sleep, so I usually try these other medications first. They include trazodone (Desyrel), diphenhydramine (Benadryl), cyclobenzaprine (Flexeril), alprazolam (Xanax), and carisoprodol (Soma). Medication is started at a low dose and gradually increased until you sleep well at night and feel good during the day, encounter unacceptable side effects, or reach the prescribed maximum dose. Starting low and slow helps minimize initial side effects such as dizziness, nausea, and morning grogginess. By two to four weeks, most patients find that the side effects are settling down and the fibromyalgia symptoms are starting to improve. It often takes a lot of fiddling with the dose to get it exactly right. It may be necessary to try several medications in succession or sometimes in combination. Some patients find that certain of these medications cause stimulation rather than sedation, as if one has had too many cups of coffee. When this "paradoxical effect" occurs it will be necessary to switch to another medication. Some medications may become less effective over time and the dose may then need to be increased slightly. Most patients will need to continue medication indefinitely, although sometimes the dose can be reduced once a good response to treatment has been achieved. Some patients report that they find various herbal and other "alternative" remedies helpful. While I can't recommend such treatments because they haven't been adequately studied for efficacy or long term harm, I don't discourage patients from using them if they find them helpful. I would encourage you to try treatments for which there is scientific proof of efficacy first, though. Most alternative treatments appear to be of no use or have no more than a placebo effect and are simply a waste of money. -------------------------------------------------------------------------------- Regular sleep Patients with fibromyalgia must try to get to bed by the same time every night and get an adequate amount of sleep. Staying up just one hour late may cause an exacerbation that lasts for several days. Many patients with fibromyalgia are worse with the change to or from Daylight Savings time. To avoid this problem, try to make the switch in fifteen-minute increments every few days instead of by one hour over one night. I have had little success getting patients truly feeling well who work shifts that prevent them from having a consistent bedtime or require that they sleep during the day. -------------------------------------------------------------------------------- Exercise Both daily gentle aerobic exercise and stretching exercises are important. While patients who try to do too much exercise too soon or of the wrong type will make themselves temporarily worse, most patients who don't begin a daily aerobic exercise regimen will never notice much improvement. Aerobic exercise is exercise that gets your heart rate up to the aerobic target heart rate for the duration of the exercise period. It is very important to count your pulse and not just guess. If your pulse is too low or too high, you may be just wasting your time or even causing harm. Heart rates are measured in beats per minute. It is accurate enough for our purposes just to take your pulse for 6 seconds and multiply by 10. Your aerobic target heart rate is calculated from the following formula: (220 - age - rhr) x .6 + rhr where age is your age in years and rhr your resting heart rate, determined by taking your pulse when you wake up but before getting out of bed. Good places to feel your pulse are at the side of your neck and just up from your wrist crease on the thumb side. If you are exercising hard enough you should be able to feel your heart beating and can just count that. For most people, the aerobic target heart rate is at about the point where they can no longer sing but can still talk comfortably. Exercise seems not to work through conditioning of muscles but rather through a direct, possibly hormonal effect on pain and sleep, which explains why you don't need to exercise painful muscles for the pain in them to decrease. Daily exercise is essential. Patients who have been exercising regularly and then miss a day usually find that their fibromyalgia symptoms are worse for the next day or two. If you are only exercising every other day you may never notice any benefit. It may take trying several different kinds of exercise before finding one or more types that agree with you. Popular kinds include walking, a water exercise program, regular or exercise bicycles, other exercise equipment, and gentle aerobic dance. Jogging, vigorous aerobic dance, and weight lifting are too strenuous for most patients. If your pain is mainly in your legs or back, exercise just your arms with light weights (soup cans work well) or try exercising in the water. You may need to cut back on exercise on days that you are feeling worse but try to still do some. While many patients may get a lot of exercise at work, doing housework, or in their yard, it is rarely the helpful kind. Effective exercise must result in a sustained elevation of the heart rate, and these incidental kinds of exercise are usually stop-and-go and may instead increase your pain. You need to set aside a time later in the day specifically for exercise. Start out with just 3- 5 minutes of exercise and gradually increase as tolerated, shooting for twenty to thirty minutes. Take a few minutes to stretch your muscles, then start out slowly, increasing to full speed after a minute or two. Slow down again for the last minute or two and repeat the stretches. Here are five recommended stretches, each done for 20 seconds a side. They should be gentle and painless. Hold onto a tree or wall for support for #s 3-5: Shrug your shoulders in a circular motion. Reach your arm over your head and bend to the opposite side. Bend forward with your legs straight. Pull your foot towards your buttock with your hand while standing on the other leg. With your feet flat on the ground and one foot ahead of the other, lean forward, bending just the front knee. Exercise is most effective if done in the late afternoon or early evening. If you absolutely can't do it then, exercising earlier in the day is better than not exercising at all, but you will probably need to exercise longer for the same effect. Don't exercise just before bed as this may interfere with sleep. Some patients find that exercise provides an immediate benefit, making them feel more alert and comfortable for several hours. If you experience this effect, you may want to try exercising on awakening and at noon as well. Some patients for whom this works may eventually not need medication. Stretching exercises such as those described above are often very helpful to decrease muscle stiffness and pain. When fibromyalgia patients have been immobile for long periods, for example in bed at night or on long car rides, their muscles tend to get stiff and painful. Stretching exercises and heat can be particularly helpful at these times. Massage may also be very beneficial. Many patients find that weekly massages greatly help the pain and stiffness, but unfortunately insurance usually does not cover massage therapy. -------------------------------------------------------------------------------- Avoid overexertion and stress Too much physical activity of the wrong kind will make you feel worse. Rather than doing housecleaning, yard work, or other physical activity all on one day, break up the task so that you do a half-hour or an hour every day until it is done. While it is difficult to learn to do this, it is essential that you be able to sense when you have reached your limit and stop. By pacing yourself, you will be more productive overall. You need to be able to say no to family and friends when you are not up to some outing or other activity. Don't take on extra responsibilities if you can avoid it. Stress also worsens fibromyalgia symptoms. If you have ongoing problems with depression or anxiety, consider seeking help for them from your family doctor or a psychiatrist. Anxiety and depression may arise as symptoms of fibromyalgia and in turn cause insomnia, leading to worsening of the underlying problem. Relaxation techniques or a chronic pain program can also help lower your stress level and are of proven benefit in treating fibromyalgia. -------------------------------------------------------------------------------- Treat other sleep disorders Several other sleep disorders besides insomnia may aggravate fibromyalgia. Almost half of men with fibromyalgia and some women have obstructive sleep apnea. In this condition the patient snores loudly and has periodic pauses in breathing after which he starts breathing again with a snort. Periodic limb movements of sleep is a condition in which patients jerk or kick every 30 to 90 seconds for long periods during the night and is also frequent in FMS. Patients may be completely unaware of either of these conditions until the spouse complains. Not only will it be difficult to get fibromyalgia symptoms to improve without treating other sleep disorders, but if sleep apnea is left untreated it may lead to injury or even premature death. Be sure to tell your physician about these problems if you notice them. Other common sources of repeated sleep disturbance are a spouse's snoring and young children. If the spouse drinks alcohol in the evenings or is overweight, avoidance of alcohol after supper or weight loss may eliminate snoring. Avoiding sleeping on the back will often help. At the very least, the patient can wear earplugs. Children are harder to put off but fortunately most soon outgrow their need for care at night. Patients who make the effort to learn as much as possible about this disorder usually do better than those who don't. I recommend that you keep this handout handy and re-read it periodically. Fibromyalgia sufferers often elicit less sympathy and support than they deserve from family, friends, and employers because of the lack of outward evidence of disease. Many have been told by physicians that there is nothing wrong with them or that it is "all in your head" which can be very demoralizing. For these reasons, and just because it is good to know that you are not alone, attending a support group can be valuable. There are local support groups in most areas now. Two large national support organizations produce good newsletters and can help you find a local support group or physician: Fibromyalgia Network PO Box 31750 Tucson, AZ. 85751-1750 info line: (520) 290-5508 fax: (520) 290-5550. For those of you with Internet access, a good place for on-line information and support is FIBROM-L, an email list devoted to fibromyalgia. To subscribe, send an email with the message sub FIBROM-L <your name> [example: sub FIBROM-L John Doe] to LISTSERV@MITVMA.MIT.EDU or go to http://www.fibrom-l.org. Be aware that there is much misinformation on the Internet and even in some books on fibromyalgia. Of the several good books available for fibromyalgia patients, two of the best in my opinion are: The Fibromyalgia Help Book by Jenny Fransen RN and I. Jon Russell MD, Ph.D., Smith House Press (1-888-220-5402 to order). Comprehensive and scientifically accurate with lots of useful references yet easily readable. Dr. Russell is a FMS researcher and editor of the Journal of Musculoskeletal Pain. Jenny Fransen is a nurse clinician with special expertise in FMS. The Fibromyalgia Survivor by Mark Pellegrino MD, Anadem Press (1-800-633- 0055 to order). Lots of valuable practical advice. Dr. Pellegrino, a physiatrist and FMS researcher who himself has FMS, has written several other books about FMS, all good. _________________________________________________________________________ National Fibromyalgia Association Handout on Fibromyalgia What is Fibromyalgia? Fibromyalgia (FM) is an increasingly recognized chronic pain illness which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle and hands, but any body part can be involved. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time. Who is affected? It is estimated that approximately 3-6% of the U.S. population has FM. Although a higher percentage of women are affected, it does strike men, women and children of all ages and races. Because of its debilitating nature, Fibromyalgia has a serious impact on patients' family, friends, and employers, as well as society at large. What are the symptoms? FM is characterized by the presence of multiple tender points and a constellation of symptoms. Pain The pain of FM is profound, widespread and chronic. It knows no boundaries, migrating to all parts of the body and varying in intensity. FM pain has been described as deep muscular aching, throbbing, twitching, stabbing and shooting pain that defines the very existence of the Fibromyalgia patient. Neurological complaints such as numbness, tingling and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors which affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress. Fatigue In today's world many people complain of fatigue; however, the fatigue of FM is much more than being tired. It is an all-encompassing exhaustion that interferes with even the simplest daily activities. It feels like every drop of energy has been drained from the body, which at times can leave the patient with a limited ability to function both mentally and physically. Sleep Problems Many Fibromyalgia patients have an associated sleep disorder which prevents them from getting deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the stage 4 deep sleep of FM patients. During sleep, individuals with FM are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep. Other symptoms Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Reynaud’s Syndrome, neurological symptoms and impaired coordination. How is it diagnosed? Currently there are no laboratory tests available for diagnosing Fibromyalgia. Doctors must rely on patient histories, self-reported symptoms, a physical examination and an accurate manual tender point examination. This exam is based on the standardized ACR criteria. Proper implementation of the exam determines the presence of multiple tender points at characteristic locations. It is estimated that it takes an average of five years for a FM patient to get an accurate diagnosis. Many doctors are still not adequately informed or educated about FM. Laboratory tests often prove negative and many FM symptoms overlap with the symptoms of other conditions, thus leading to extensive investigative costs and frustration for both the doctor and patient. Another essential point that must be considered is that the presence of other diseases, such as rheumatoid arthritis or lupus, does not rule out a FM diagnosis. Fibromyalgia is not a diagnosis of exclusion and must be diagnosed by its own characteristic features. To receive a diagnosis of FM, the patient must meet the following diagnostic criteria: Widespread pain in all four quadrants of the body for a minimum duration of three months Tenderness or pain in at least 11 of the 18 specified tender points when pressure is applied (see figure above) What causes FM? While the underlying cause or causes of FM still remain a mystery, new research findings continue to bring us closer to understanding the basic mechanisms of Fibromyalgia. Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function. Recent studies show that genetic factors may predispose individuals to a genetic susceptibility to FM. For some, the onset of FM is slow; however, in a large percentage of patients the onset is triggered by an illness or injury that causes trauma to the body. These events may act to incite an undetected physiological problem already present. Exciting new research has also begun in the areas of brain imaging and neurosurgery. Continued work will look at the hypothesis that FM is caused by an interpretative defect in the central nervous system that brings about abnormal pain perception. Medical researchers have just begun to untangle the truths about this life-altering disease. How is FM treated? One of the most important factors in improving the symptoms of FM is for the patient to recognize the need for lifestyle adaptation. Most people are resistant to change because it implies adjustment, discomfort and effort. However, in the case of FM, change can bring about recognizable improvement in function and quality of life. Becoming educated about FM gives the patient more potential for improvement. An empathetic physician who is knowledgeable about the diagnosis and treatment of FM and who will listen to and work with the patient is an important component of treatment. It may be a family practitioner, an internist or a specialist (rheumatologist or neurologist, for example). Conventional medical intervention may be only part of a potential treatment program. Alternative treatments, nutrition, relaxation techniques and exercise play an important role in FM treatment as well. Each patient should, along with the healthcare practitioner, establish a multifaceted and individualized approach that works for them. Pain Management Over-the-counter pain medications, such as acetaminophen or ibuprofen, may be helpful in relieving pain. The physician may decide to prescribe one of the newer non-narcotic pain relievers (e.g. tramadol) or low doses of antidepressants (e.g. tricyclic antidepressants, serotonin reuptake inhibitors) or benzodiazepines. Patients must remember that antidepressants are "serotonin builders" and can be prescribed at low levels to help improve sleep and relieve pain. If the patient is experiencing depression, higher levels of these or other medications may need to be prescribed. Another beneficial pain therapy, which works well on localized areas of pain, is lidocaine injections into the patient's tender points. An important aspect of pain management is a regular program of gentle exercise and stretching, which helps maintain muscle tone and reduces pain and stiffness. Sleep Management Improved sleep can be obtained by implementing a healthy sleep regimen, which includes going to bed and getting up at the same time every day, making sure that the sleeping environment is conducive to sleep (i.e. quiet, free from distractions, a comfortable room temperature, a supportive bed), avoiding caffeine, sugar and alcohol before bed, doing some type of light exercise during the day, avoiding eating immediately before bedtime and practicing relaxation exercises as you fall to sleep. When necessary, there are new sleep medications that can be prescribed, some of which can be especially helpful if the patient's sleep is disturbed by restless legs or periodic limb movement disorder. Psychological Support Learning to live with a chronic illness often challenges an individual emotionally. The FM patient needs to develop a program that provides emotional support and increases communication with family and friends. Many communities throughout the United States and abroad have organized Fibromyalgia support groups. These groups often provide important information and have guest speakers who discuss subjects of particular interest to the FM patient. Counseling sessions with a trained professional may help improve communication and understanding about the illness and help to build healthier relationships within the patient's family. Other Treatments Complementary therapies can be very beneficial. These include: physical therapy, therapeutic massage, myofascial release therapy, water therapy, light aerobics, acupressure, application of heat or cold, acupuncture, yoga, relaxation exercises, breathing techniques, aromatherapy, cognitive therapy, biofeedback, herbs, nutritional supplements, and osteopathic or chiropractic manipulation. What is the prognosis? Better than ever before! The efforts of individuals, support groups, organizations and medical professionals to help improve the quality of life for people with FM are starting to pay off. Better ways to diagnose and treat FM are on the horizon. The symptoms of FM can vary in severity and often wax and wane, but most patients do not tend to improve over time. However, by actively seeking new information, talking to others who have FM, re-evaluating daily priorities, making lifestyle changes, and working hard to keep a hopeful attitude, the FM sufferer can become the FM survivor! _________________________________________________________________________ Copied from a friends web page, who also suffers from an invisable Illness. the origin of this essay is unknown. It does, however, very accurately describe the choices that those with chronic pain and fatigue conditions must make on a daily basis. A realistic explanation of how FM patients must order their day and what it costs them to get through each day The Spoon Theory My best friend Jenni 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 this time, with a 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. Jenni 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 “Jenni, 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 choice, 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 Jenni 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, “Jenni, 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 “Jenni, 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". © 2003 by Butyoudontlooksick.com _________________________________________________________________________ Symptom List. This list of FM symptoms has been gathered from surveys filled out by 1448 FM patients. Note, there are several commonly co-occurring conditions that accompany FM in many patients. Indeed, most patients have been diagnosed with at least three of these. Some of the symptoms listed below are primary to the co-occurring conditions and only secondary to FM. A list of these secondary co-occurring conditions will follow the symptom list. burning sensations light headedness feeling 'spaced out' disequilibrium tinnitus (ringing in the ears) difficulty in moving your tongue to speak severe muscle weakness susceptibility to muscle, tendon, ligament injury intolerance to bright lights intolerance to alcohol intolerance to sound extreme sensitivity to medications and their side-effects alteration of taste, smell, and hearing insomnia sleep disturbances headaches frequent unusual nightmares and disturbing dreams inability to achieve stage 4 restorative sleep morning stiffness in the muscles and joints restless leg syndrome muscle spasms muscle quakiness and shivering during/after activity or exercise sleep paralysis (related to stage 4 sleep deprivation) changes in visual acuity numb or tingling feelings excessively restless sleep (restless legs, twitching, etc.) attention deficit disorder spatial disorientation calculation difficulties memory disturbance - long term memory memory disturbance - short term memory communication difficulties (problems speaking, confusing words) depression - clinical depression - situational anxiety and panic attacks personality changes, usually for the worse emotional instability (mood swings) recurrent flu-like illness recurrent sore throats, red and injected painful lymph nodes under the arms and neck muscle and joint aches with tender and trigger points night fever night sweats severe nasal and other allergies irritable bowel syndrome (IBS)- diarrhea, constipation, flatulence, nausea, bloating weight loss weight gain heart palpitations mitral valve prolapse severe PMS yeast infections - not just vaginal, but systemic as well rashes and itching uncomfortable or frequent urination interstitial bladder cystitis chest pains (non-cardiac) temporomandibular joint dysfunction (in the jaw) hair loss cold hands and feet dry eyes and mouth watery eyes severe and debilitating fatigue widespread pain Numbness in the limbs, not painful like pins & needles painful swelling in the hands, legs, feet, neck “growing pains” start in childhood and teens, continue into adulthood widespread body pain during/after physical exertion tremors in extremities Commonly co-occurring conditions: Chronic Migraine Irritable Bowel Syndrome Multiple Chemical Sensitivities Reynaud's Phenominon Restless Leg Syndrome Various sleep Disorders (in addition to the primary FM stage four Alpha-Delta wave Dysfunction) Mitral Valve Prolapse GERD's Lowered seizure Threshold (Recurrent Seizure Disorder) Myofascial Pain Syndrome

I hope that this will serve to help you better understand the challenges faced by not only your loved one with FM, but also by everyone who loves and is loved by them. I would also like to point you towards two online support groups, one for FM patients, and one for those who love them. The first is

www.health.groups.yahoo.com/group/Fibromyalgia-CFS/

for FM patients. The second is

www.health.groups.yahoo.com/group/fibromyalgiaandcfsfamilyroom/

for the family and friends who care enough about them to want to learn more about how to better cope with caring for and about someone with this devastating illness. Thank you for taking the time to read this, it is my hope that you will find it of some help.

Sincerely, Sage

I hope some of you find this to be of help. Please feel free to post questions, I will do my best to address them in the order received.