And now let's hear what the experts have to say! (Print this out and have it ready for the next person who tells you it's "ALL IN YOUR HEAD"
IS FIBROMYALGIA REAL??? WHAT A RESEARCHER HAS TO SAY: Ordinary touches multiply into severe pain for fibromyalgia patients By Eric Benjamin Lowe
Imagine living every day in excruciating pain. The millions of Americans who suffer from fibromyalgia must cope with this as well as the doubts of many who dismiss it as a made-up illness invented by a troubled mind.
But researchers at UF and elsewhere are beginning to piece together clues that reveal the physical basis of the puzzling syndrome that causes severe fatigue and aches, and has defied easy diagnosis.
UF scientists have found an abnormal central nervous system reaction in those with fibromyalgia-the body magnifies ordinary repetitive stimulation into an experience of crippling pain.
"This is particularly important because it has been unclear if fibromyalgia was just an imagined illness or a real syndrome," said Roland Staud, M.D., an associate professor of medicine at UF's College of Medicine who also is affiliated with the UF Brain Institute. "We now have good evidence that shows that it's not a psychological abnormality, but that there is a neurological abnormality present."
Staud, who presented his research findings at the annual meeting of the American College of Rheumatology last November, recently was awarded a National Institutes of Health grant worth nearly $800,000 to continue his studies for the next four years. Donald Price, Ph.D., a professor of oral and maxillofacial surgery in the College of Dentistry, and Charles Vierck, Ph.D., a professor of neuroscience, are collaborating on the research. Their goal is to develop a better understanding of the condition, with an eye toward improving diagnostic tests and treatments.
An estimated 3.7 million people in the United States - primarily women who are diagnosed during their 30s and 40s - have fibromyalgia, according to the NIH. A chronic illness with no known cure, its cause also is not known. Researchers have theorized that an injury to the central nervous system or an infectious agent might be responsible for triggering it in people who have inherited susceptibility. Symptoms include persistent and widespread musculoskeletal pain, fatigue and tenderness in the neck, spine, shoulders and hips.
Staud and colleagues found the central nervous system abnormality by conducting a series of repetitive stimulation tests on people with the syndrome as well as healthy research participants. The tests involved repeatedly placing warm plates on their hands and arms. The healthy participants felt the sensation but did not report it as pain.
For those with fibromyalgia, however, the sensation would magnify with each repetition into an experience of crippling and unbearable pain.
"When a sensation signal reaches the spinal cord, the signal can be omitted, changed or augmented," Staud said. "If it is augmented, then something that is innocuous, such as pressure on the skin, can then be perceived as a painful stimulus."
Jessica LeMay, one of Staud's patients, has been battling fibromyalgia since 1993. The 30-year-old Lake City resident said the pain starts in one area and usually spreads, sometimes becoming overwhelming.
"I imagine if someone had taken a baseball bat and beaten me with it, that's got to be what it feels like," she said. "Depending on the day, I'll just move out of the way if someone tries to touch me."
LeMay said many people dismiss her condition, not understanding the "huge difference" between her severe fatigue and the healthy person's occasional tiredness.
"When this fatigue would come about, it's almost like a weight being dropped on you, and you can't function anymore," she said.
LeMay said she is hopeful that Staud's research will lead to more effective treatment for fibromyalgia patients and better understanding by the general public.
"In our society, you either get better or you die, and fibromyalgia patients don't do that," she said. "We don't fit in the mold, so people don't know what to do with us."
This index forecasts the potential for weather-related aches and pains, especially in people with chronic health conditions (such as migraines or arthritis) that might make them sensitive to changes in weather conditions. "10" represents the highest risk of weather-related aches and pains. "1" represents the lowest risk.
The Aches & Pains Index is calculated using barometric pressure, absolute humidity, chance of precipitation, temperature and wind. Areas of quiet, dry weather during warmer times of the year are generally associated with lower levels of aches and pains. Approaching areas of low pressure or strong frontal systems, both leading to stormy weather, may cause higher levels of aches and pains.
The scale for the Aches & Pains Index is: Very High (9, 10), High (7, 8), Moderate (5, 6), Low (3, 4), Minimal (1, 2)
For more information about the relationship between weather and well-being, see Aches & Pains 101.
Chance of Precipitation
Precipitation includes not only rain, but also snow, sleet, hail or any other form of water that reaches the ground. It is considered a factor in aches and pains because rainy weather accompanies changes in barometric pressure and humidity. For those who are sensitive to hot weather, rain can cool the atmosphere and may bring some relief.
Humidity Change
Humidity is the amount of water vapor in the air. An increase in absolute humidity (the amount of water vapor per unit of air), especially in the summer, is commonly associated with an increased potential for aches and pains. Some research also finds a correlation between dry, cold air and migraine headaches.
The four levels of the Humidity Change scale are: Steady, Slight, Moderate, Significant
Temperature Change
Rapidly rising or falling temperatures are a hallmark of big weather changes, indicating underlying shifts in barometric pressure. Extremes in temperature, not just changing temperatures, can also affect the potential for feeling aches and pains. Low temperatures may trigger migraine headaches, exacerbate circulatory conditions and contribute to arthritic joint stiffness. Cold weather has also been associated with an increase in asthma-related hospital admissions.
The four levels of the Temperature Change scale are: Steady, Slight, Moderate, Significant
For more about weather conditions and health, see Aches & Pains 101.
Weather is considered a possible influence on a wide variety of health conditions. In some cases, such as migraine headaches, weather may bring on an episode. In other cases, weather factors may make existing pain worse.
Here are some health conditions commonly associated with weather-influenced aches and pains:
Arthritis Arthritis is pain and stiffness in joints or connective tissues. Particular types include rheumatoid arthritis, osteoarthritis, gout and many others.
Several studies over the past 20 years have found no correlation between arthritis pain and weather conditions. One researcher, a Stanford psychologist, said that because people naturally look for patterns, subjects mistakenly associated their pain with weather conditions. However, a study in 1960 at the University of Pennsylvania and a later Dutch experiment did find connections between increased arthritis pain and certain weather conditions.
Weather factors that may impact arthritis pain include dramatic changes in barometric pressure and humidity. Cold weather can increase stiffness in muscles and joints.
Fibromyalgia Fibromyalgia Syndrome (also called FMS) is a chronic condition of fatigue accompanied by pain and tenderness in muscles, tendons and other connective tissues. Fibromyalgia occurs mainly in women. Stress, activity level and weather are considered possible influences on the condition. A 1981 survey reported that more than 90% of fibromyalgia patients believed "cold and humid" weather, in particular, made them feel worse. Changes in barometric pressure may also affect those with FMS.
Migraines Migraines are headaches caused by constriction or dilation of the blood vessels in the brain. Pain generally occurs on one side of the face or head. Sufferers sometimes feel nausea and sensitivity to light or sound. Triggers include stress, hormonal fluctuations, certain types of food and weather.
According to research by the New England Center for Headache, as many as half of all migraines are triggered by weather. Many migraine sufferers single out cold, dry weather as the culprit, though almost any weather change can be a problem. Some doctors suggest that patients keep a detailed headache journal, so they can anticipate weather changes and take preventative medication, if necessary.
Sinus headaches Sinuses are the air cavities in the bones around your nasal passages. When sinuses become clogged or infected, the resulting pressure can cause a headache. Symptoms include pain in the front of the head and around the eyes, yellow or green nasal discharge and perhaps a fever. It's believed that barometric pressure changes may bring on headaches, if the sinus cavities are slow to equalize air pressure. Damp, cold weather can intensify sinus pain.
A recent study suggests that most people who think they are suffering from sinus headaches may actually have migraines -- especially in cases where weather is an obvious trigger. Since symptoms of both types of headaches can vary, visit your doctor for a proper diagnosis.
Multiple Sclerosis Multiple Sclerosis (or MS) is a chronic neurological disease marked by loss of coordination or balance, blurred vision, slurred speech, extreme fatigue and a host of other problems. The symptoms, which can come and go unpredictably, result from a breakdown of the covering that protects nerve fibers in the central nervous system. Some people with MS report that their symptoms get worse in hot weather or when they become overheated. Cold weather may also cause discomfort in some MS patients.
Raynaud's phenomenon Raynaud's phenomenon is a condition in which blood vessel spasms disrupt blood circulation to the fingers or toes. The phenomenon, which turns one or several digits pale or bluish, can last minutes or hours, but generally does not cause tissue damage. Pain is uncommon, but there may be partial, temporary paralysis in the affected area. Emotional reactions and cold weather are two known triggers.
Asthma Asthma is breathing difficulty brought on by constriction of the lung's airway passages. Research has shown a correlation between cool, dry weather and increased asthma-related hospital admissions. Spring and summer can also bring on asthma attacks, because of increased pollen and pollution in the air. Wind is also a factor, since it can transport those irritants over long distances. Visit the weather.com Allergies and Air Quality sections for pollen reports and pollution forecasts for your area.
The American Academy of Pain Medicine, The American Pain Society and the American Society of Addiction Medicine
Consensus Document
BACKGROUND
Clear terminology is necessary for effective communication regarding medical issues. Scientists, clinicians, regulators and the lay public use disparate definitions of terms related to addiction. These disparities contribute to a misunderstanding of the nature of addiction and the risk of addiction, especially in situations in which opioids are used, or are being considered for use, to manage pain. Confusion regarding the treatment of pain results in unnecessary suffering, economic burdens to society, and inappropriate adverse actions against patients and professionals.
Many medications, including opioids, play important roles in the treatment of pain. Opioids, however, often have their utilization limited by concerns regarding misuse, addiction and possible diversion for non-medical uses.
Many medications used in medical practice produce dependence, and some may lead to addiction in vulnerable individuals. The latter medications appear to stimulate brain reward mechanisms; these include opioids, sedatives, stimulants, anxiolytics, some muscle relaxants, and cannabinoids.
Physical dependence, tolerance and addiction are discrete and different phenomena that are often confused. Since their clinical implications and management differ markedly, it is important that uniform definitions, based on current scientific and clinical understanding, be established in order to promote better care of patients with pain and other conditions where the use of dependence-producing drugs is appropriate, and to encourage appropriate regulatory policies and enforcement strategies.
RECOMMENDATIONS
The American Society of Addiction Medicine (ASAM), the American Academy of Pain Medicine (AAPM), and the American Pain Society (APS) recognize the following definitions and recommend their use:
ADDICTION
Addiction is a primary, chronic, neurobiologicneurobiological disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.
PHYSICAL DEPENDENCE
Physical dependence is a state of adaptation that often includes tolerance and is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist.
In the case of sedative drugs, spontaneous withdrawal may occur with continued use. Tolerance Tolerance is a state of adaptation in which exposure to a drug induces changes that result in a diminution of one or more of the drug's effects over time.
DISCUSSION
Most specialists in pain medicine and addiction medicine agree that patients treated with prolonged opioid therapy usually do develop physical dependence and sometimes develop tolerance, but do not usually develop addictive disorders. However, the actual risk is not known and probably varies with genetic predisposition, among other factors. Addiction, unlike tolerance and physical dependence, is not a predictable drug effect, but represents an idiosyncratic adverse reaction in biologically and psychosocially vulnerable individuals. Most exposures to drugs that can stimulate the brain's reward center do not produce addiction. Addiction is a primary chronic disease and exposure to drugs is only one of the etiologic factors in its development.
Addiction in the course of opioid therapy of pain can best be assessed after the pain has been brought under adequate control, though this is not always possible. Addiction is recognized by the observation of one or more of its characteristic features: impaired control, craving and compulsive use, and continued use despite negative physical, mental and/or social consequences. An individual's behaviors that may suggest addiction sometimes are simply a reflection of unrelieved pain or other problems unrelated to addiction. Therefore, good clinical judgment must be used in determining whether the pattern of behaviors signals the presence of addiction or reflects a different issue.
Behaviors suggestive of addiction may include: inability to take medications according to an agreed upon schedule, taking multiple doses together, frequent reports of lost or stolen prescriptions, doctor shopping, isolation from family and friends and/or use of non-prescribed psychoactive drugs in addition to prescribed medications. Other behaviors which may raise concern are the use of analgesic medications for other than analgesic effects, such as sedation, an increase in energy, a decrease in anxiety, or intoxication; non-compliance with recommended non-opioid treatments or evaluations; insistence on rapid-onset formulations/routes of administration; or reports of no relief whatsoever by any non-opioid treatments.
Adverse consequences of addictive use of medications may include persistent sedation or intoxication due to overuse; increasing functional impairment and other medical complications; psychological manifestations such as irritability, apathy, anxiety or depression; or adverse legal, economic or social consequences. Common and expected side effects of the medications, such as constipation or sedation due to use of prescribed doses, are not viewed as adverse consequences in this context. It should be emphasized that no single event is diagnostic of addictive disorder. Rather, the diagnosis is made in response to a pattern of behavior that usually becomes obvious over time.
Pseudoaddiction is a term which has been used to describe patient behaviors that may occur when pain is undertreated. Patients with unrelieved pain may become focused on obtaining medications, may "clock watch," and may otherwise seem inappropriately "drug seeking." Even such behaviors as illicit drug use and deception can occur in the patient's efforts to obtain relief. Pseudoaddiction can be distinguished from true addiction in that the behaviors resolve when pain is effectively treated.
Physical dependence on and tolerance to prescribed drugs do not constitute sufficient evidence of psychoactive substance use disorder or addiction. They are normal responses that often occur with the persistent use of certain medications. Physical dependence may develop with chronic use of many classes of medications. These include beta blockers, alpha-2 adrenergic agents, corticosteroids, antidepressants and other medications that are not associated with addictive disorders.
When drugs that induce physical dependence are no longer needed, they should be carefully tapered while monitoring clinical symptoms to avoid withdrawal phenomena and such effects as rebound hyperalgesia. Such tapering, or withdrawal, of medication should not be termed detoxification. At times, anxiety and sweating can be seen in patients who are dependent on sedative drugs, such as alcohol or benzodiazepines, and who continue taking these drugs. This is usually an indication of development of tolerance, though the symptoms may be due to a return of the symptoms of an underlying anxiety disorder, due to the development of a new anxiety disorder related to drug use, or due to true withdrawal symptoms.
A patient who is physically dependent on opioids may sometimes continue to use these despite resolution of pain only to avoid withdrawal. Such use does not necessarily reflect addiction.
Tolerance may occur to both the desired and undesired effects of drugs, and may develop at different rates for different effects. For example, in the case of opioids, tolerance usually develops more slowly to analgesia than to respiratory depression, and tolerance to the constipating effects may not occur at all. Tolerance to the analgesic effects of opioids is variable in occurrence but is never absolute; thus, no upper limit to dosage of pure opioid agonists can be established.
Universal agreement on definitions of addiction, physical dependence and tolerance is critical to the optimization of pain treatment and the management of addictive disorders. While the definitions offered here do not constitute formal diagnostic criteria, it is hoped that they may serve as a basis for the future development of more specific, universally accepted diagnostic guidelines. The definitions and concepts that are offered here have been developed through a consensus process of the American Academy of Pain Medicine, the American Pain Society, and the American Society of Addiction Medicine.
That I may know just what to say. When they question our cries of pain, Tell me dear Lord how do we begin to explain? The looks, the stares, the disbelief, Oh my heart is so full of grief. The doctors say it can't get any worse, Then why do I see it as a daily curse? Day to day I lay in wonder of the feeling I'm going under, Ever so slowly the clouds come to fog my mind, Have I been here before, what have I left behind? I turn around looking for someone, something to blame, Only to realize that this illness I must tame. My body goes from one extreme to another, Some days I loose my grip on being a Mother. Lost and afraid of who I've become, As I well remember once that I was someone. Who smiled and laughed a lot, Now people wonder just what I've got. Lord, I'm tired and in so much pain, Help me face another day. Even when I feel this way, I've so much more to gain. Since my body won't let me pick and choose, Things that need to be done, Let it be the important ones so that I may not loose. Faith in you...Faith in me. For a brighter day. OKIESONE@aol.com
Chronic pain is a serious problem but is often made worse by misinformation, negative attitudes and beliefs, outdated ideas, negative emotions. It is recognised that chronic pain is often mismanaged, not because we lack adequate treatments, but because of fear and ignorance. These steps are designed to help you mentally cope with chronic pain in the best way possible.
1. Make sure you understand what kind of a problem pain really is.
Chronic pain is different to other medical problems, which can often be treated relatively easily and successfully. Chronic pain is a complex illness, caused and maintained by a combination of physical, psychological and neurological factors.
These multiple causes make it difficult to pinpoint any one cause for pain, or any one treatment. Pain is also often dismissed or poorly treated because of the 'baggage' of old ideas about pain - for example, pain where the physical cause is unknown is often undertreated. This is despite the fact that the role of neurological factors means pain can occur in the absence of external causes and that such pain should not be dismissed or considered abnormal.
The medical establishment has struggled to meet the challenge of pain, and now recognises that this problem cannot be overcome without combining input from other disciplines such as psychology and physical therapies. Pain is also a subjective experience which is impossible to accurately measure. Pain involves a range of emotional reactions including anxiety, fear and depression.
2. Acceptance
Chronic pain is so awful that sometimes it's easier to escape into wishing it had never happened, or hoping for a miracle cure. If persistent, these common reactions to pain can actually become a bit of a trap. You need to face the reality of what's happened, and find constructive ways of dealing with it.
Acceptance means more than just intellectually knowing that you have pain, it means actually allowing yourself to feel the anxiety, fear, anger and grief that go with pain. Acceptance is a process, which requires progressively acknowledging all your feelings, and getting your physical and emotional needs.
In order to accept and go through the negative emotions associated with chronic pain, you must have adequate safety and support. Safety means having adequate control over your pain through the right combination of medical, physical and psychological treatment inputs. Support means having adequate emotional support from family and friends giving you a feeling of containment and security.
The end product of acceptance is reduced pain, inner peace, less anxiety and better coping.
3. Take Control.
After many months or even years of pain and failed treatments, its easy to slip into feeling hopeless and that nothing can be done. Pain sufferers are often the butt of negative treatment and it's easy to end up feeling angry and victimized. They often have some justification for feeling this way.
Maybe you didn't cause the pain, and maybe you aren't happy with some aspects of your treatment, but guess what? - life isn't fair. Blaming others for your problems, however well-justified, turns you into a victim and is like giving away control of your life. You are allowing yourself to be led by your emotions, but you do have a choice. Take the easy path (which isn't really so easy) and simply blame others, or take control and get information, communicate assertively with your doctor, practicing pain-management strategies such as regular exercise, pacing and relaxation and stress-management.
You need to decide whether you want to be a victim or a survivor, a passenger or a driver. Your pain is no-one else's problem but your own. You do have rights and even responsibilities as a health consumer and a patient. Because chronic pain is difficult to detect or measure, you need to be an informed, active participant in your treatment.
Don't be afraid to ask questions, don't be afraid to tell the doctor what you think and what you want, don't be afraid to ask for stronger pain relief.
4. Have a good working relationship with your doctor.
An open and trusting relationship with your doctor is essential. This means being able to tell your doctor how you feel, ask questions and feel listened to and understood.
The doctor-patient relationship must be a two-way street. Although you rely on your doctor's "expert" opinion for treatment advice, he depends on you for accurate information on which to base his decisions. It is your responsibility to describe your symptoms as accurately as possible and to report back regarding treatment outcomes, even if unfavourable.
Under-reporting of pain has been identified as one of the biggest causes of mismanagement of pain. The doctor-patient relationship can be undermined by bad communication, ignorance, arrogance and fear. For example, many people are actually afraid to tell their doctor how they are feeling for fear of being labelled as weak or a complainer. Other patients report down-playing the severity of their pain because they don't want their doctor to feel like a failure!
You should feel that you can talk to your doctor, that he listens and respects you, and be satisfied that he is working competently and thoroughly on your behalf. You also have a right to change doctors if you are dissatisfied.
5. Never ignore pain.
In the treatment of chronic pain it has become fashionable to recommend ignoring pain (after medical investigations are complete) in the belief that it is only pain and there is nothing physically wrong.
This approach represents a pendulum-swing away from the old fashioned notion of prescribing bed-rest in favour of maintaining activity. The idea is that inactivity only leads to depression and does not help the problem anyway.
However, with certain types of pain, this can lead to a cycle of aggravation, sleep deprivation, exhaustion and increased pain and suffering, particularly if you are someone who typically ignores pain (ignoring pain is of course, what causes most repetitive strain injuries).
The other problem with ignoring pain is that every time pain occurs, it leaves an imprint in your nervous system, a kind of 'pain memory'. These repetitive pain experiences lead to overstimulation of the nervous system and the generation of spontaneous pain signals, leading to a cycle of stress and pain. There are thus sound reasons for wanting to avoid pain, but again, total inactivity is not the answer. The best approach is a balanced one with paced activity levels and avoiding undue aggravation of the pain.
6. Have a balanced approach to physical activity.
It can be tempting to adopt a "do nothing" approach, in the hope that you may avoid further pain. As we have indicated, since chronic pain is partly caused by neurological changes, avoiding activity will not stop the pain. Avoiding activity also leads to muscle wasting and a build-up of waste-products in the tissues, which can actually exacerbate pain.
At other times, you may feel frustrated and force yourself to complete relatively major tasks (eg mowing the lawns) knowing that it will hurt later. This may cause you to have to take two days of bed rest to recover. This "all or nothing" approach is inappropriate and ineffective in the long run.
You need to pace activity levels. You can do this on your own, via "trial and error" or with a bit of 'coaching' in the form of professional help. The support and guidance of a sympathetic health professional is highly desirable to maintain motivation and deal with fears and obstacles along the way.
7. Sleep!
Loss of sleep caused by inadequately managed pain can lead to a cycle of fatigue, depression and irritability. Inability to sleep, or waking up feeling tired, are signs that your pain is not being managed properly. Developing a restful sleep pattern is essential to coping with chronic pain. Improving your sleep will give you more energy and help you feel more able to cope.
There are many things you can do to get better sleep including relaxing, perhaps by taking a hot bath, listening to music or playing a favourite relaxation tape before going to sleep; self-hypnosis; a good mattress; posture; medication; and good overall stress-management.
8. Make sure you have adequate support.
Many chronic pain sufferers become isolated, alienated from loved ones, their work-mates and society. Inadequate social or emotional support can lead to isolation, depression, and increased risk of suicide. People who normally pride themselves on being independent and not needing others are particularly 'at risk'.
Unfortunately, the negative reactions of others can discourage chronic pain sufferers from talking about their problems or seeking help. The unhelpful reactions of people you thought you could rely on can be very disappointing, it's another thing that falls into the 'life isn't fair' basket.
The reality is it's simply ridiculous to expect yourself to be able to cope on your own with a chronic illness that robs you of your ability to work love and play. Having adequate emotional support greatly increases your ability to cope.
Talking to close family and friends is vital. A family talk with your doctor of psychologist can also help by enabling them to learn more about your condition and talk about things in a neutral environment.
9. Don't expect people who don't have pain to understand what it's like.
It's frustrating, and easy to get angry when others don't seem to understand. However, because chronic pain sufferers often have no visible injury, it is easy for family and friends, and especially children, to forget there is anything wrong. They may also 'forget' because it is hard for them to have to live with the knowledge that a loved one is in pain.
So don't expect people who don't have pain to understand what it's like and be prepared to have to remind others about your limitations. Children especially cannot be expected to understand the implications of a condition like chronic pain. It's a lesson that has to be repeated many times.
10. Forgive yourself.
The lost ability to work, love and play caused by chronic pain can create feelings of guilt and failure. Become aware of your own expectations, and any feelings of shame or guilt and examine them critically. Chances are you didn't ask to be in pain.
Repressed feelings of shame lead to resentment and later emerge as anger. Feeling guilty can also be a subtle form of self-indulgence - when you engage in self-blame you are really wallowing in self-pity.
Forgiveness and letting go of guilt will be easier if you choose a proactive approach by adopting these 10 Steps.
This information is provided by Mark Grant to assist you to participate actively in your treatment and cope with chronic pain in the best way possible.Mark Grant is a psychologist, specializing in the management of chronic pain and trauma. His advice is based on many years of clinical experience working with persons affected by chronic pain and trauma.Mark has also conducted research regarding a multi-modal approach to pain management. He is the author of two self-help tapes which use accelerated learning principles for sufferers of chronic pain and stress: Calm and Confident based on EMDR and Pain Control, based on EMDR. He has also spoken at numerous international conferences and workshops about pain management.
Ten Tips For Communicating With A Person Suffering From Chronic Pain
by Mark Grant MA
People with chronic pain communicate differently to well people. Tired, irritable and withdrawn, they are often reluctant or unable to talk about their feelings. Or they may talk in a kind of 'code' and tell you they feel fine when they are really hurting. Sometimes they just don't have the words to describe how they feel.
These factors can create frustration and often lead to a breakdown in communication between the pain sufferer those whose mission it is to try and understand them.. The following 'communication tips' are designed to help you recognise and overcome the special obstacles that may occur when communicating with persons suffering from chronic pain or illness.
1. Listen!
To really listen is one of the most helpful things you can do for a person in pain. Listening also involves more than just hearing what is being said.
A good listener listens with their heart as well as their ears. They are able to read between the lines and interpret unspoken non-verbal pain communications. To be a good listener you must focus your attention completely on the person you are communicating with, and listen to how they are saying it as well as what they are saying.
Good listeners are also able to drop their own preconceptions and assumptions and adopt an attitude of genuine and profound curiosity. Repeating and summarizing what is said is also a skill associated with good listening.
As Bernard Lown, MD and Nobel prize-winner, notes, 'the majority of people's complaints are relatively straightforward, detectable to the ear cultivated to listen for the inaudible sigh, visible to the eye sensitive to the unshed tear.'
2. Don't Fake It.
It can be unpleasant to listen to someone talk about their pain (imagine how it is for them!). Don't ask someone how they're feeling unless you're really prepared to listen. However, it's better to really listen for just five minutes than to pretend - you don't have to have all the answers. People can tell if you're not really interested and it makes them feel like they are a burden.
3. Understand that pain sufferers may be afraid to say how they are feeling.
Many chronic pain sufferers are silent about their pain because of fear of ridicule or a feeling of 'what's the point?' or just thinking that if they don't talk about it, maybe it will go away. Others understate their pain for similar reasons.
Not expressing or underreporting pain are coping mechanisms which can be misleading to the unsuspecting. So when someone you suspect of being in pain says they feel fine, you can let them know that you're really interested, but you understand if they don't want to talk about it.
4. Look for non-verbal cues.
As indicated, chronic pain sufferers often underreport their pain, so look for a 'mismatch' between what is said and how they appear. Some tell-tale symptoms that usually indicate severe and inadequately controlled pain include sweating, irritability, sleep disturbance, restlessness, difficulty concentrating, decreased activity and suicidal thoughts.
Many chronic pain sufferers are so accustomed to these negative feelings they do not recognise their significance and so don't volunteer this information unless specifically asked.
5. Believe people when they say they are in pain.
When pain sufferers complain about their pain, they are often not believed. There are many reasons for this including a myth that chronic pain sufferers exaggerate their pain in order to gain sympathy or avoid responsibilities.
In general, people do not go around pretending they are in pain to get sympathy - research has shown that exaggerating or malingering are actually rare. Remember, "pain is whatever the experiencing person says it is, whenever the experiencing person says it does."
6. Asking 'helpful' questions can stimulate hope.
Helpful questions are specific or open-ended questions that convey you understand and are interested in what the pain sufferer is experiencing. For example, you can obtain a rough idea of how much pain they have by asking them to rate their pain on a scale of 0 to 10 where 0 = no pain and 10 = the worst possible pain. Other important areas to ask about include sleep, concentration, sweats, and mood (look for depression, irritability).
It's also amazing how rarely chronic pain sufferers are ever asked directly how satisfied they are with their treatment, and whether or not they think their pain is bearable. Being asked the right questions also gives the pain sufferer permission to talk about their pain.
7. Avoid "words that maim".
Words are a powerful "two-edged sword" - they can maim or heal. Thoughtless throwaway lines such as "you'll just have to learn to live with it" or "you don't look sick" do nothing to help and make the sufferer feel worse.
Elementary psychology teaches that fear is an improper way to motivate constructive behavior. Instead of mobilizing the sufferer's inner resources, such talk dissipates hope. Constructive, carefully chosen words, in the context of a caring relationship, can be a powerful activator of healing resources.
Just asking someone who is feeling at the end of their tether "so how have you survived?" can evoke awareness of strengths and determination to survive.
8. Have compassion.
Try and put aside your cares and preoccupations even for just a few minutes and listen with an open heart. Compassion is known to be one of the most healing human emotions.
As the essayist Anatole Broyard wrote "I wouldn't demand a lot of my doctor's time. I just wish he would brood on my situation for perhaps five minutes, that he would give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh to get at my illness, for each man is ill in his own way. Without such recognition I am nothing but my illness."
9. Be honest about the limitations of your own knowledge.
IIt is difficult to see a person in pain and not know how to help them. Nobody likes to see someone suffer. It can be tempting to offer well-meaning advice such as "you'll just have to learn to live with it", which, however well-intended, is not actually very helpful.
It is better to admit you don't know the answer rather than to say something which may unintentionally destroy hope.
10. Remember, pain is not what you think it is.
As you're probably aware, the concept of pain has undergone considerable revision in recent decades. Pain has gone from being thought of in purely physical terms to the realization that it is made up of physical, psychological and neurological factors. However, although it is over 30 years since theInternational Association for the Study of Pain officially declared that pain is both a mental and an emotional problem, many people still act as though pain can be understood simply as a sign of physical injury.
For example, pain sufferers are often met with disbelief (even by trained medical professionals) because they do not have any visible injury. But as pain specialists now realize, the involvement of neurological factors explains why pain can occur in the absence of external causes. It also means that pain in the absence of external causes should not be considered abnormal.
Pain is in part a psychological problem involving a range of emotions. The initial response to pain is fear, which is appropriate since pain represents a threat to identity and the ability to work, love and play. However, when pain persists, fear turns into anxiety and depression.
The effect of depression is for people in pain to show less emotion, and thus to not appear as though they are in pain. Pain is also very difficult to convey in language, making it even harder to understand what the pain sufferer is experiencing. So to understand a person in pain you have to remember that pain is a highly complex and individual thing.
The other thing to remember is that pain is different for everybody, depending on the personality and life history of the person experiencing it. Thus, you cannot know another person's pain.
Hello cher, my name is Dr Patty V (psydchick) and I also have chronic/intractable pain. I would like to add you to my friends space on msn. I am new at msn so i dont know how to market. i guess i am doing it now..lol. I also have a group for pain patients and would love you to check it out also. I look forward to getting to know you!!
As you can see, my name is Dr Patty V (psydchick). I am 43 years old. I am married to a wonderful man that i have known since 1994. We have been married for almost 6 years (July 30, 2000). I was born in Freeport, NY and i lived on Long Island, NY for the first 11 years of my life (no, i don't have my accent still. I graduated high school in 1980 (Birmingham High School in Van Nuys, CA). Upom graduation, i went to college at UCSD. I went there for 1 year. Due to financial difficulties of my family at the time, i did not return to UCSD for a second year. I worked full-time and went to Jr College (LA Pierce College, Woodland Hills, CA). I saved money, applied for financial aid and then started UCLA in 1983. I worked really hard to help my mom pay for school. I got 3 jobs at the beginning of my schooling at UCLA. I worked in a law office as a clerk, worked at a preschool as an assistant teacher and also worked in my dorm at UCLA food service. On may 15, 1983 while i was working in food service, i was helping another worker with the dishes (we worked on converyor belt at the time). This other person was getting behind so i gave him some help of moving a tray of silverware to another location. Unfortunately, they never taught proper body mechanics in those days. I felt a pull in my back. I continued with my shift and after i went to my dorm room to lay down. When i awoke i had severe pain in my back and could barely move. I was told by my roommate (who also worked in food service) to go to the hospital. I felt uncomfortable about making a fuss. I thank the Lord i did. I went to the E.R. that night and i was told i had to stay at bedrest for 2 weeks. I was given some pain medication that made me feel so ill. The first shot of narcotics in my life (Demerol). I told the nurse i was going to be sick. She didn't believe me..lol, so i vomited all over the place. Anyway, i was sent home to rest and employee health got ahold of me and sent me to an orthopedic surgeon 2 weeks after my injury. I had been given meds, went to a chiropractor (which made it hurt more), physical therapy, and then eventually an oil based mylogram. It turned out that what they thought i did (sprain), it was a disk herniation at L5-S1. Since then, i went through my first surgery in August, 1983. It was experimental and they no longer do it in the united states anymore. It was called chymopapain. I felt good for 2 years and then i started having horrible pain again. Then after more tests, going into pain management hospital, attempting to tough it out (also moved to Orange, CA to continue school), i had another surgery in 1986. It was a fusion from L5-S1. In 1987 i had a third surgery which was another fusion from L4-S1 (i had trouble fusing from the first one). After each of these surgeries i had to be at bedrest for 6 months. After the first fusion, i had very little pain for 6 months and only had to take aspirin for the pain. After the second fusion i did not get much relief. I was in a body cast for about 6 more months. I remember graduating from Chapman University with a cast under my cap and gown (cute pic huh? lol). After graduation from my bachelor's degree, i decided to apply for a master's in psychology. I wanted so bad to help others who were suffering from pain like i was. I remembered back several years when i was in pain management talking to the psychologist. She had been trying to tell me how to live my life in pain. I asked her "do you have pain" and she said "no". I said then "how can you tell me how to live my life in pain?" From that time on i realized that nobody could ever tell me that if i was a pain therapist. In 1989, i met an orthopedist who thought he would be able to help me. I was told that i had to lose weight (100 pounds) before he would attempt to do surgery. I had tried everything over the years. In 1989 i had a gastric stapling and a gastric intestinal bypass. I lost a lot of weight, to the point where i was vitamin deficient, and couldn't keep any food down. I also had dumping syndrome several times a day (this is where you have a really bad case of the runs). I lost over 100 pounds in 1 year and i had another back surgery in 1990. This was an anterior and posterior fusion (L3-S1). Here, hardware was placed. I had screws and isola rods. Again, i had trouble fusing. After this surgery, i didn't seem to do much better. Yet i continued to do things in my life. In 1994, after losing so much weight and being in so much pain, i had to go to the hospital because i was quite ill. It was recommended that i go through detox because the docs believed in those days that anyone who had to take narcotics every day was an addict (which is so far from the truth). In February, 1994 i entered the detox unit and live there for 1 month. I was horrible because i was cut off cold turkey. I couldn't sleep, eat, and lord i was in so much pain. The only drug i was given for pain was an anti inflammatory. It was called Dolobid. After leaving the hospital, i attempted to go home and deal with this horrible pain without medications. I felt so alone and frustrated because i was in severe pain and i was brainwashed to belive if i took any more narcotics i would explode. After leaving the detox program i decided i wanted to help others. I went back to the hospital to ask some questions and was asked to volunteer. I thought that it would be a great idea. I wanted to try to get my sitting tolerance up so that i could go back to school. I went to physical therapy in the early am's and went to volunteer in the detox unit right after exercising. I was doing great. Then, one day i got up and felt like i had the flu. I was dizzy, not hungry, just feeling horrid. Within a few days i went to my doc for a checkup and found out the i didn't have the flu and that i should not have been able to get up let alone drive. I had some sort of bleed and my hemoglobin went down to a 3. I was immediately put in the hospital for a transfusion and then went back home for the weekend. I returned back to my volunteer work on Monday and started to feel odd again. I decided it was too soon to come back to work, so I decided to go home. I went to say goodbye to one of the nurses and she wouldn't let me leave. Apparently, i was showing symptoms of bleeding inside. I was sent over to the emergency room and went in to shock pretty soon after getting there. It turns out that the Dolobid i was taking ate a hole through my little stomach pouch and i was bleeding to death. I was told that i would have to reverse the gastric stapling and bypass if i needed to stay on anti inflammatories. This was done soon after going in the hospital. I remember this guy visiting me in the hospital. He was chaiman of the volunteer organization that i was volunteering in. One night he bought this
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