Living with chronic pain can lead to feelings of loss in many areas of life, including home, work, school, and recreation. Below are suggestions or ways to cope with loss and live a more satisfying life.
- Accept your condition One of the most important steps you can take involves accepting that you may always have pain or other symptoms. Acceptance does not mean giving up hope, but instead reaching a point where you refuse to let symptoms dictate your activities. You can make a conscience effort to stop focusing on losses and situations you cannot change, and strive to enjoy life in spite of pain or symptoms.
- Recognize your loss Many people dealing with chronic pain or illness do not consider the changes that have occurred in their lives to be losses. Recognize that a chronic condition can affect what you are able to do. However, try not to exaggerate the impact of your symptoms.
- Express your feelings Acknowledge your grief and the feelings you have toward your loss. Share your feelings with family members and friends. Try writing your thoughts and feelings in a journal.
- Consider professional help If feelings of loss or grief are overwhelming, debilitating or persist for more than a few months, talk with your health care provider. Seeking professional help is not an admission of defeat, but a positive act toward controlling your reactions.
- Try to maintain a positive attitude A negative attitude can intensify your symptoms and increase troubling emotions. A positive outlook improves your ability to face the upsetting emotions that chronic symptoms can produce. When you experience troubling emotions, stop and evaluate your thoughts. Try to replace negative thoughts with rational, positive ones.
- Focus on your abilities, not your limitations Try not to compare your current situation with the way things used to be. This can produce "all-or-nothing thinking"--the idea that, if you cannot do something exactly as before, you can no longer do it at all. Instead, modify or change your activites when necessary. For example, if symptoms prevent you from playing 18 holes of golf, play nine holes and perhaps ride a golf cart. Or, if you can no longer work 40 hours a week, consider reducing your hours or finding a different job.
- Develop your sense of purpose and meaning Do things that you find personally rewarding and meaningful. For example, volunteer work or helping someone in need can boost your sense of self-worth and remind you that you make a difference.
- Use your mind Engage in activities that are mentally stimulating. Play games, take a class, or artistic pursuits.
- Use your faith Many people rely on their faith to help them face feelings of grief and loss.
- Be patient Allow time to process and deal with the thoughts and feelings surrounding loss and to adopt new habits and ways of thinking. Also remember that it may take time before you notice the benefits of exercise or other new coping activities.
Living with a chronic condition can be stressful and lead to feelings of loss and grief. Adopting healthy approaches to your feelings can help make your life more enjoyable and satisfying.
Sleep hygiene is a term used to define proper sleep habits that result in normal, quality nighttime sleep and daytime alertness. The goal here is to maintain a regular sleep-and wake pattern, seven days a week. This means that you need to implement the same routine during the week and on weekends, so that you sleep between seven and a half and eight hours per night. Often fibromyalgia sufferers have difficulty sleeping even a few hours within a 24-hour period, whereas others are so exhausted that they sleep all day long and then are wide awake at night. Either way, going to sleep and getting up at the same time every day is important.
The following are ways you can increase good sleep hygiene:
- Attempt to do regular exercises every day. Exercise warms your body and decreased body temperatures are a sign to go to sleep, be sure you don't exercise close to the time you are going to bed.
- Avoid taking naps during the daytime. If you must take a nap, do not sleep for more than 30 minutes total. Rest periods or Power Naps, when you sit or lie down for 10 minutes without falling asleep, may help to restore your energy when you become tired throughout the day.
- Establish a routine of going to bed and waking up at the same time every day. This will help make your body perform better.
- When you go to bed, it should be for rest, sleep, or intimacy only. Avoid watching TV in bed or discussing stressful subjects before you go to sleep.
- If you have trouble falling asleep, do not drink caffeinated tea or coffee, eat chocolate, or smoke cigarettes. All of these things are stimulants that can prevent you from getting deep, quality sleep.
- Alcohol can also fragment your sleep. Although you may have heard that it will help you get to sleep, the problem begins when the body starts to metabolize the alcohol. This will cause you to fall asleep and then wake up throughout the night.
- Avoid unnecessary medications with alertness side effects. Discuss whether an herbal sleep aid such as Calms Forte is appropriate or if a prescription for sleeping pills is right for you with your health care professional.
- Reduce environmental factors that might prevent you from falling asleep or that arouse you from sleep:
- Get into a position that is comfortable for you to fall asleep
- Make sure your bed is comfortable (Add various thickness of padding if necessary to adjust the hardness of the mattress to your liking)
- Make sure your pillows are comfortable and use extra pillows to prop up areas that are especially sore. Consider using a water-filled pillow that can help support your neck.
- Make sure the room is not too hot or cold. Avoid extreme temperatures.
- Protect the room from external noises and bright light. Disconnect the phone and use earplugs or eye shades if necessary.
- Decorate your bedroom to make it relaxing. Use neutral colors and get rid of clutter such as computers, exercise machines etc. The sleep environment should be pleasant and relaxing.
- Some people need complete silence to fall asleep, others find white noise soothing. Examples of white noise include a fan, a waterfall, or humming of a machine. People with Fibromyalgia are very sensitive to light; black out shades may help reduce outside light.
- Hide your bedroom clock for your view. If you wake up during the night, don't look at the time. If you know what time it is, you might feel anxious about how many more hours until you can get up or how little time there is left for sleeping.
- Avoid eating a meal right before bedtime. Do not go to bed too full or too hungry. Be careful of what you eat in the evening. Certain foods can cause heart-burn or gas that can disrupt sleep. It might be helpful to drink a glass of milk or eat a small portion of turkey or other foods that contain the amino acid tryptophan, which can help induce sleep.
- If possible, make sure that you are not the person responsible for taking care of children or pets when you are trying to go to sleep. To know that someone else is taking care of these responsibilities will help you feel more relaxed.
- Establish a bedtime routine:
- Avoid emotionally upsetting conversations and activities before trying to go to sleep.
- Take care of health related activities, such as washing your face, brushing your teeth, and taking your medications.
- Do something relaxing to calm your mind and body, such as relaxation or meditation practices or reading something light and entertaining. Listen to soft music with your eyes shut.
- If you cannot fall asleep after 20 minutes, get out of bed and do something besides trying to fall asleep. Concentrate on the pleasant feeling of relaxing. Don't expose yourself to bright light while you are up because this will wake you up instead of helping you fall asleep.
- When you get up in the morning, make sure you expose yourself to a lot of sunlight before 9am. Light exposure helps maintain your circadian rhythms. You do not have to sunbathe, just get out into the sunlight.
In a survey conducted by the National Fibromyalgia Association, 99 percent of the respondents who were currently disabled because of fibromyalgia, said that they would return to work immediately if they could find some relief for their pain.
If it has become impossible for you to maintain work on a consistent basis, you can may want to consider applying for Social Security Disability. The reality however, is that the disability process is a taxing one and for someone with fibromyalgia it can be arduous at best. Many find the process too exasperating and give up only to find themselves living a financial nightmare.
In the majority of fibromyalgia cases, the individual can continue to work, but in some situations disability is not a choice but rather a necessity. Understand that disability does not have to be a permanent situation. If you are concerned about being able to work, first consider trying these options:
- Cut back the number of hours you work
- Get permission to work from home
- Talk to your employer about setting up an area where you can lie down and rest during the day
- Work the hours of the day that you usually feel best
- If necessary, find a different job that is not as stressful, demanding or is closer to home
It is important to note that the Social Security Administration has determined that fibromyalgia "can constitute medically determinable impairments within the meaning of the statute." Or in other words, a person with fibromyalgia can be found disabled if it is proven that they meet the accepted medical standards for disability. Social Security Disability Insurance is just that--insurance coverage for wage earners who have worked 5 years out of 10 years before they became unable to work.
Social Security disability benefits range between $350 and $1,800 per month, and access to Medicare begins after 24 months of benefit payments. The onset of disease is usually not the onset of disability. To qualify, you have to meet Social Security's qualifications, which are determined by five questions.
- Are you working? If you are working and your earnings average more than $800 a month, you cannot be considered for disability. However, this is not a hard and fast rule and there are exceptions
- Is your condition "severe"? You condition must interfere with basic work-related activities for your claim to be considered disabling.
- Is your condition found in the list of disabling impairments, and if not is it sufficiently severe? (The listing is contained in the booklet "Disability Evaluation Under Social Security." The office of Medical Evaluation is the source of all Social Security information pertaining to medical issues. The address to obtain a copy of the booklet is:
Office of Medical Evalation
Office of Disability, SSA
6401 Security Boulevard
Baltimore, MD 21235
The list of disabling impairments is maintained by Social Security. Certain impairments are considered severe that they automatically qualify you as disabled. Fibromyalgia is not on the list, and must be decided based upon medical and vocational (or work related) considerations. Those rules are not easy to find because they take concepts from a wide body of regulations, case law, and vocational evidence.
4. Can you do the work you did in the last 15 years? If your condition is severe, but not at the same or equal severity as impairment on the list, it must be determined whether it interferes with your ability to do the work you idid in the last 15 years. If it does not, your claim may be denied. There are rules that incorporate age, education, and past work experience, which may affect the entire situation.
5. Can you do other work? If you cannot do the work you did in the past, you will be evaluated to see whether you are able to adjust to other work. To be disabled you must be unable to perform an unskilled, sit-down job on a full-time, regualar basis. If you cannot adjust to other work, your claim will be approved.
Studies such as the occupational environment study by George Waylonis, M.D. are useful in looking at the types of work activities that cause problems for people with fibromyalgia. When applying for disability you are placing yourself in a stressful situation. Be prepared to feel frustrated and exhausted by the process. If you recognize that this is going to be a long difficult course, in the beginning you can mentally and physically prepare yourself for the ordeal.
How To Win Your Case?
You can do many things to help ensure that you win your disability case. To get through the process, be sure that you have the involvement of a well-informed, supportive, health-care professional, a knowledgeable attorney, and family members who are willing to assist you and to see that you are mentally prepared to be persistent throughout the process. You do not win your case proving that you have fibromyalgia, but rather that you are physically incapable of performing your past job functions and all other types of work. One of the more vital points that you need to prove is that your illness prevents you form regular work attendance.
75% of all disability applications will initially be denied benefits. Half of those denied will give up and not appeal the denial. 53% percent of the applicants who persevere to a hearing before an administrative judge will obtain benefits.
Keep in mind:
- The Social Security Administration has determined that fibromyalgia "can constitute medically determinable impairments within the meaning of the statute."
- Several kinds of disability programs exist, including state worker's compensation, private pension disability, public pension plans, and Social Security Disability Insurance (SSDI)
- To qualify for Social Security Disability Insurance, you have to meet social security's qualifications.
- When applying for disability you must be committed to being patient and to seeing the process through.
- As soon as you know that you are not capable of working any time in the next 12 months and that you have a valid disability case, you should contact the Social Security Administration (the SSA nationwide number is 1-800-772-1213) and request an application to apply for disability. You can also apply online.
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Fibromyalgia is a chronic disorder characterized by widespread pain and exquisite pain sensitivity that may produce high levels of suffering and greatly diminish your quality of life.
Fibromyalgia is real. For those who have experienced chronic widespread pain and nagging fatigue, along with a variety of other "fibro" symptoms, there is no debate over its existence. Fibromyalgia is a condition that involves chronic pain amplification caused by neuroendocrine abnormalties. What is that? Neuroendocrine abnormalties refers to neurological and hormonol/chemical irregularities that cause disordered sensory processing, resulting in pain and a constellation of symptoms.
The name fibromyalgia comes from the latin words fibro, my, and algia, which tranlated mean fribrous tissues, muscles, and pain. Together they describe the main symptom of fibromyalgia: painful muscles, tendons, and ligaments. However, widespread pain throughout the soft tissues of the body is only one of the symptoms that are a part of this syndrome. Chronic pain is also accompanied by fatigue, disordered sleep, stiffness, numbness, cognitive difficulties, anxiety, muscle weakness, and sensitivity to light and sound.
Fibromyalgia is classified as a syndrome because it is a collection of symptoms and overlapping conditions. Because it can mimic other illnesses or coexist with other diseases such as lupus, rheumatoid arthritis, or even cancer, fibromyalgia is difficult to diagnose. The chief complaint is constant pain, above and below the waist and on both sides of the body. You may feel like you have the constant flu and are completely out of energy. The pain can be described as stabbing, burning, tingling, aching or even cramping. Many people with fibromyalgia experience congnitive difficulties, making it tricky for them to verbally express their thoughts. Fibro Fog can cause you to lose your train of thought and makes you feel like your thinking is foggy.
The following is a list of symptoms and overlapping conditions. Although each person does not necessarily have all the symptoms, individuals often experience many of the symptoms at one time or another.
- Bodywide Muscle and Joint Pain
- Fatigue
- Altered Sleep
- Stiffness
- Dizziness (Balance Problems)
- Sensitivity fo Environmental Factors (light, sound, smells, temperature)
- Temporomandibular Dysfunction
- Chronic Fatigue Syndrome
- Headaches
- Migraines
- Anxiety/Panic Attacks
- Irritable Bowel Syndrome
- Paresthesia (Numbness and Tingling)
- Allergies and Chemical Sensitivities
- Restless Leg Syndrome
- Dry Mouth and Eyes
- Skin Rashes and Irritations
- Conginitive Impairments
- Vulvodynia
- Endometriosis
- Interstitial Cystitis
- Painful Periods
- Carpal Tunnel Syndrome
- Depression
- Ringing in Ears
- Irritable Bladder
Because fibromyalgia will cause you to experience multiple symptoms that come and go at random, at times it becomes difficult to lead a routine life. The intensity can also vary from mild ro extreme. It can be frustrating to feel less pain one day and more pain the next.
The basis of diagnoses:
- Widespread pain on the left and right side of the body, above and below the waist, as well as axial skeletal pain (such as neck, front or back chest, and lower back)
- Pain in 11 of 18 tender points.
Therefore, if you have a history of widespread pain for more than three months and health-care professionals finds 11 or more tender points upon a physical examination, a diagnosis of fibromyalgia can be made.
Tender points are areas of muscle or other soft tissues that are extremely sensitive to pressure stimulation. People with fibromyalgia experience pain in at least 11 or more tender points. For now, tender points have been found to be very consistent sites for diagnosing individuals with fibromyalgia.
During a diagnosis the health-care professional will press firmly on 18 (a total of 9 pairs of) designated tender points located:
- The left or right side of the back of the neck, directly below the hairline
- The left or right side of the front of the neck, above the collarbone
- The left or right side of the chest, right below the collarbone
- The left or right side of the upper back, near where the neck and shoulder join
- The left or right side of the spine in the upper back between the shoulder blades
- The inside of either arm, where it bends at the elbow
- The left or right side of the lower back, right below the waist
- Either side of the buttocks right under the hipbones
- On the fat pad over the kneecaps
If 11 or more tender points are reported painful, the health-care professional may make a fibromyalgia diagnosis.
Millions of people are dealing with fibromyalgia on a daily basis. Fibromyalgia affects men, women, and children of all ages, races and economic levels. Currently, we do not know the exact cause or have a cure for fibromyalgia, however, there are ways to help improve the quality of life for those that have this syndrome. There is hope.
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