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.........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.
Fibromyalgia produces widespread pain, disturbed sleep, and exhaustion from head to toe. Fibromyalgia means pain in the muscles, ligaments, and tendons—the soft fibrous tissues of the body. Although the muscles hurt everywhere, they are not the only cause of the pain. Instead, the diffuse, body-wide symptoms are greatly magnified by malfunctions in the way the nervous system processes pain.
Regional muscle pain not related to arthritis or the nervous system also occurs in the majority of people with fibromyalgia. Patients describe this as firm knots in the belly of muscles, often causing restricted movement and radiating pain. These muscle nodules are myofascial trigger points and some researchers suspect that these painful areas overlap with the tender points used to diagnose fibromyalgia.
The symptoms of fibromyalgia are unpredictable and most patients are frustrated by their physical limitations and inability to make plans. You may feel as though you have to "push yourself" to get things done.
Most patients with fibromyalgia say that their muscles feel like they have been pulled or overworked, and sometimes they twitch or cramp. Even the skin may feel badly sunburned. To help your family and friends relate to your fibromyalgia symptoms, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply.
Given that the symptoms may be similar to a viral flu, experts in the field of fibromyalgia and chronic fatigue syndrome believe that these two illnesses may be one and the same. Gulf War syndrome also overlaps with these two conditions.
Pain - Fibromyalgia pain has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, stabbing, or intense burning. Quite often, the pain and stiffness are worse in the morning, and muscle groups that are used repetitively may hurt more. In addition, the severity of regional pains (particularly those in the head, neck, shoulders and lower back) are a strong predictor of a person's overall pain rating. The muscles in these painful areas can feel tight, knotted and rope-like. Pressing on the firm, knotted region hurts and often causes the pain to shoot to other muscles when a myofascial trigger point is present.
Fatigue - This symptom can be one of the most incapacitating for people with fibromyalgia. Patients may feel as though their arms and legs are weighted down by concrete blocks and their bodies may be so drained of energy that every task is an effort.
Memory and Concentration - Difficulty concentrating and retaining new information may seriously interfere with everyday mental tasks. This symptom is referred to as "fibro fog" and may hinder job opportunities. In particular, fibromyalgia patients have serious difficulty retaining new information if they are distracted.
Sleep Disorders - Patients report trouble falling asleep and more importantly staying asleep, but the unrefreshing quality is what makes the disorder much worse than insomnia. Repeat arousals prevent patients from reaching deep, restorative sleep. As a result, the night is spent in "quasi-sleep" and patients wake up feeling as though they have been run over by a Mack truck. An overnight sleep study will likely show repeat arousals with bursts of awake-like brain activity occurring throughout the night, but a specific sleep disorder may not be identified.
Exercise Difficulties - Moderate intensity exercise activates a powerful pain-relieving system in healthy people, but it makes the pain of fibromyalgia worse. This is why initiating an exercise program may make you achy and tired. However, if you do not exercise on a regular basis, the performance of normal daily living activities will start to cause more pain. Rather than give in to the increased pain sensitivity related to exercise, patients are advised to do mild exercise in short intervals (such as five minutes at a time) to keep the muscles fit while not over-taxing them. A study in Sweden revealed that half of the fibromyalgia patients found it impossible or difficult to climb stairs and a majority of patients could not run. Just standing for five minutes was extremely taxing to one-fourth of the patients.
Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain and bloating, abdominal gas, and nausea represent symptoms commonly found in roughly 40 to 70 percent of fibromyalgia patients
Chronic Headaches - Recurrent migraine or tension headaches are experienced by 50 to 70 percent of fibromyalgia patients. Most headaches are rated as severe, occur at least two times per week, and often have a migraine component. Referred pain from myofascial trigger points in the shoulder, neck, and head muscles are suspected to be responsible for most tension-type headache and also play a role in migraines.
Jaw Pain - Temporomandibular joint dysfunction causes tremendous jaw-related face and head pain and affects one-quarter of fibromyalgia patients. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.
Other Common Symptoms - Non-cardiac chest pain, acid reflux, irregular heart beat or palpitations, shortness of breath, numbness and tingling sensations, the feeling of swollen extremities, chemical sensitivities, nasal congestion, premenstrual syndrome and painful periods, irritable bladder, interstitial cystitis, vulvodynia (vulvar pain), difficulty focusing eyes, dry or burning eyes and mouth, dizziness or feeling faint, profuse sweating, muscle weakness and balance issues can occur. Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, some foods, and often the medications that they are prescribed.
Aggravating Factors - Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, and over-exertion can all contribute to fibromyalgia symptom flare-ups.
A Letter To: Normals :
Having FMS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident , most people do not understand even a little about FMS/MSP and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me.... - Please understand that being sick doesnt mean Im not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably dont seem like much fun to be with, but Im 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 Ive been sick for years. I cant 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. It doesnt mean that Im not in a lot of pain, or extremely tired, or that Im getting better, or any of those things. Please, dont say , "Oh, your 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 for ten minutes doesnt necessarily mean that I can stand up for twenty minutes ,or an hour. And, just because I manage to stand up for thirty minutes yesterday doesnt mean that I can do the same today. With a lot of disease youre either paralyzed, or you can move. With this one it gets more confusing. -Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what FMS/MPS does to you. -Please understand that FMS variable. It's quite possible (for me, its 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 then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally. -Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression (wouldnt you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. -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 cant be put off of forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive. -If you want to suggest a cure to me, don't .It's not because I don't appreciate the thought, and it's not because I dont 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 FMS/MPS 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 FMS/MPS, if something worked we would know. -If after reading that, you still want to suggest a cure, then do it, but dont expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you . ...and, as much as it's possible, I need you to understand me. From Fibrohugs (the site where I found this letter): We would like to state that this "Letter to Normals" be used to help other people with FMS as long as proper credit is given to Bek Oberin (Bek wrote the Open Letter To Those Without CFIDS). This letter was modified (with permission) and published by Paula Payne in 1996 to become the "Letter to Normals"
