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Posts tagged fibromyalgia

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A Letter to the Healthy World from the Land of Chronic Pain and Fatigue

If you were born with healthy genes, you may know me but you don’t understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn’t know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn’t a disease at all, and it isn’t even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an “all in your head” disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME 

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability. 

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it.

6. My intolerance - I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Author’s note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn’t want to spend even a day in their shoes…or their bodies.

(via vanransandwich)

Filed under fibromyalgia A Letter to the Healthy World from the Land of Chronic Pain and Fatigue chronic illness

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Open Letter To Normals

These are the things that I would like you to understand about me before you judge me…


Please understand that being sick doesn’t mean I’m not still a human being.  I have to spend most of my day flat on my back in bed and I might not seem like great company, but I’m 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 I’ve been sick for years. I can’t 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. I may be tired. I may be in pain. I may be sicker than ever.  Please, don’t say, “Oh, you’re sounding better!”  I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.


Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover - imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting up”, ”walking”, “thinking”, “being sociable” and so on …. it applies to everything. That’s 
what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, 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, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now - it can’t be put off or forgotten just because I’m doing something. Fibromyalgia does not forgive.

Please understand that I can’t spend all of my energy trying to get well.  With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well.  But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because 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 Fibro 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 Fibro, if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor.

Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you - people who are not sick - for many things.

But most importantly, I need you to understand me.


(via vanransandwich)

Filed under repost fibromyalgia chronic illness

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MY NAME IS FIBROMYALGIA by Terri Been

Hi….My Name is Fibromyalgia, 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.

Filed under repost fibromyalgia my name is fibromyalgia

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4 Tips to Help Cope With Chronic Pain and Depression

By: William W. Deardorff, PhD, ABPP

It is not uncommon for those who suffer from chronic pain to feel stressed and depressed at times. This is no surprise, given the fact that “chronic pain” usually means pain that lasts more than three to six months. Prolonged pain appears to set up a pathway in the nervous system that sends pain signals to the brain, even in the absence of an underlying anatomical problem.

Some chronic pain may be due to a diagnosable anatomical problem, such as degenerative disc disease or spinal stenosis, that can cause continual pain until successfully treated. More often, the chronic pain has no clear anatomical cause, as in failed back surgery syndrome or chronic back pain without an identified pain generator. In such cases, the pain is itself the disease. Click here for more Depression Symptoms

For some people, the stress and depression resulting from chronic pain can become consuming, and can even worsen and prolong the pain. (More information on Depression Causes.) Increased pain can, in turn, lead to increased stress and depression, creating a cycle of depression and pain that can be difficult to break. There are things a person with pain can do, however, to prevent or manage the chronic pain and depression that may develop:

1) Minimize the chances of developing chronic pain

Talking to a physician about symptoms of depression or stress, or a history of depression, while still in the acute pain phase can alert a physician to the need for consideration of both conditions in creating a treatment plan for the patient’s spine health. While one patient may demonstrate a full recovery from the initial injury, a patient who is more prone to depression and stress, shows signs of depression and/or stress, or who has a history of clinical depression may be more vulnerable to developing a chronic pain problem that persists beyond the initial acute pain complaint. An informed physician can suggest a treatment plan early on that treats the patient’s mental state as well as their physical pain, minimizing the chances of the patient developing a chronic pain problem.

It is advisable for patients to talk with their doctors if they experience any of the following common symptoms of depression:

    • Changes in sleep patterns
    • Changes in appetite
    • Feelings of anxiety.

    Stress can manifest itself in several ways. Patients should talk with their doctors if they believe they exhibit symptoms characteristic of stress-related back pain, which are similar to those of fibromyalgia:

      • Back pain and/or neck pain
      • Diffuse muscle aches
      • Muscle tender points
      • Sleep disturbance and fatigue

      In many stress-related back pain cases, patients complain of the pain “moving around”

      Chronic pain can also be exacerbated by things such as physical de-conditioning due to lack of exercise and a person’s thoughts about the pain. Patients can help thwart their pain from developing into or minimizing chronic pain by engaging in an appropriate exercise program and practicing distraction, guided imagery and other cognitive techniques.

      2) Identify stress triggers that can increase chronic pain

      Patients can monitor how their own stress and anxiety affects their back pain by keeping a diary of when their back pain changes and what kinds of stress could be triggering the pain. This exercise can redirect a patient’s focus from the pain to the elements in their life that affect their pain. Identifying stress triggers or emotional triggers that affect the pain will give the patient the opportunity for better pain relief through avoiding or eliminating these stress triggers. Recognizing how depression and stress affect their pain can lessen anxiety by giving patients more control over their chronic pain problem.

      3) Communicate about depression

      Depression and an emotional reaction to chronic pain are normal. Many patients do not speak to their physicians about their depression because they believe that once the initial pain problem is resolved, the depression, anxiety, and stress they are feeling will go away. However, secondary losses from a chronic pain problem, such as changes in the ability to do favorite activities, disrupted family relationships, financial stress, or the loss of a job, can continue to contribute to feelings of hopelessness and depression.

      Talking to a physician about feelings of depression will keep the physician better informed and better able to provide appropriate care. Depression can affect the frequency and intensity of pain symptoms, and the healing rate. Getting simultaneous back pain treatment and depression treatment will give the patient a better chance of a full recovery.

      4) Seek multi-disciplinary care for pain and depression

      Informing a physician of depression can create an opportunity for a multi-disciplinary course of treatment involving both a physician and a mental health professional. With a team approach, both the pain problem and the depression are monitored simultaneously, and both doctors can communicate about how each area affects the other. It’s important for physicians to understand that changes in the physical symptoms of pain can also be related to changes in a patient’s mental state.

      In addition, some common treatments for pain, including opioid pain medication, can actually make depression worse. This worsening depression can then affect the physical presentation of the pain. If both physical and mental well-being are being monitored closely by medical experts, treatment and medication recommendations, including antidepressants, can be made that take both the physical pain and the emotional health of the patient into account.


      Filed under fibromyalgia pain chronic depression dealing with coping

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      When You’re in Pain, You Have a Right to Do Less

      The American Chronic Pain Association has issued a list of the basic rights of a chronic pain sufferer. Perhaps one of the most important of them is the right to “do less than you are humanly capable of doing.”

      In a culture that celebrates efficiency, maximum productivity, and pushing limits, doing less is a radical concept. But Penney Cowan, executive director of the association, believes it is crucial.

      "People with pain tend to be overachievers who don’t listen to what their body is telling them when the pain starts," says Cowan. "They push themselves until the pain is screaming, instead of stopping when the pain is whimpering." 

      For many, stopping an activity before it’s done may result in a complete reappraisal of how they see themselves.

      Andrea Kramer, a back-pain and fibromyalgia sufferer from Montgomery Village, Md., describes herself as “a doer, a pusher, a runner.” But as the reality of her condition set in, she had to adjust to the fact that she “couldn’t do laundry, dishes, lifting, washing a car—it depended upon the level of pain,” says Kramer.

      The lurking tendency to overdo it
      One problem is that even if pain temporarily sidelines the superachiever, that person’s underlying mindset doesn’t disappear. It just lays low until pain takes a brief vacation. 

      Then on a good day the go-getter wants to do as much as possible. “You push, you don’t pace, you overexert,” says Cowan. 

      Dan Clauw, MD, director of the Chronic Pain and Fatigue Research Center at the University of Michigan, sees this ebb-and-flow pattern all the time and says it’s not good for pain management. 

      "I would suggest that people do the same amount of activity every day so they can even out their peaks and valleys," says Dr. Clauw. 
      Too many bad days in a row can leave a lot undone, making a pain sufferer feel overwhelmed and melancholy. Cowan says chronic pain demands a clear eye for priorities, which is why she suggests that the pain patient make lists. “Set realistic goals for yourself,” she says, “and narrow them down to a point where you’re not going to set yourself up for failure.”

      Accepting your limits is critical
      Judy, 49, who runs a headache support group in Nashua, N.H., has taken the “right to do less” mantra to heart. But it’s not easy if the price is a less tidy home.

      "I’ve lessened expectations on myself over the years," she explains. "If things don’t get done, they don’t get done. I just can’t get down on myself about them, because it’s a choice between trying to feel well and saying my house has to look absolutely perfect."

      Amanda, 39, a migraine sufferer who attends Judy’s support group, has also learned to pace herself. For example, she cleans early and often, little bits at a time. “My parents are coming in a few weeks, and I’ve already started cleaning because I have no idea how I’m going to feel. So I do things slowly or piecemeal here and there. I’ve learned to work around it.”

      Filed under fibromyalgia pain chronic you have a right to do less

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      The Pain Patient’s Bill of Rights

      People living with chronic pain are often “people pleasers,” according to the American Chronic Pain Association. That means they may dismiss their own needs to assist others, or be hesitant to express their needs and ask that they be met. 

      One of the key steps to finding relief and living well is to know your needs and limits and have people meet and respect them. The ACPA acknowledges 15 basic rights to which every pain patient is entitled.

      As a person suffering from chronic pain, you have a right to:

      1. Act in a way that promotes dignity and self-respect.
      2. Be treated with respect.
      3. Make mistakes.
      4. Do less than you are humanly capable of doing.
      5. Change your mind.
      6. Ask for what you want.
      7. Take time to slow down and think before you act.
      8. Ask for information.
      9. Ask for help or assistance.
      10. Feel good about yourself.
      11. Disagree.
      12. Not have to explain everything you do and think.
      13. Say “no” and not feel guilty.
      14. Ask why.
      15. Be listened to and taken seriously when expressing your feelings.

      (Source: health.com)

      Filed under fibromyalgia pain chronic bill of rights pain patient

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      How to Maintain Healthy Relationships

      Not only can chronic pain feel isolating, sometimes sharing it with friends and family can be worse than keeping it to yourself. Here’s a guide from patients who know about the problems you may encounter with your loved ones and how to handle them.

      Help your friends help you

      "Chances are your family and friends will react to your pain in one of three ways," says Jen Singer, 41, a cancer survivor from Kinnelon, N.J. "They’ll want to fix it for you, they’ll wish they didn’t have to know about it, or they’ll want you to suck it up." 

      Singer advises pain sufferers to avoid analyzing friends’ and relatives’ motives and focus on how they can support you. 

      "When you’re feeling relatively OK, tell them how you want to be treated when the pain hits," suggests Singer. "Maybe you want to be left alone. Maybe you need help breathing through it or reaching for your pain meds. They’ll probably be relieved when you let them know—even if you want them to do nothing."

      Understand why it may be difficult for them

      Some people just can’t handle a person in pain. “People really don’t want to be around sick people,” says Steven Feinberg, MD, a past president of the American Academy of Pain Medicine. 

      "When someone is ill you feel sorry for them. But we’re all busy," Dr. Feinberg says. "We say we care and things like that but the reality is, except for our immediate family, we don’t want to be reminded of our own mortality." 

      At the same time that friends may be pulling away, you may not have the energy to pull them back. “If you’re in chronic pain, you don’t have the physical strength,” explains Dr. Feinberg. “You’re irritable—and people don’t want to be around you. So you start losing relationships.”

      Find ways to work friends in

      Shelley Kirkpatrick, 32, of Bellefontaine, Ohio, found that family and friends did stick by her once she helped them understand the limitations that fibromyalgia has put on her socializing. 

      "I can’t go with a group of friends to the mall and shop all day anymore," says Kirkpatrick. "I can’t spend an entire day out in the sunshine on the beach or whatever; I get fatigued." 

      So Kirkpatrick and her friends plan activities around her energy levels. “I may be able to go shopping for half a day instead of a whole day. So we may plan to do shopping in the morning and see a movie in the afternoon, instead of trying to cram everything into one day. We all just kind of work together to get things done.”

      If all else fails, be your own best friend

      "Many people with chronic pain, myself included, look to others for validation and understanding," says Rebecca Rengo, 52, a St. Charles, Mo., resident who suffers from several pain conditions, including fibromyalgia, and is the author ofBeyond Chronic Pain

      "Even people who are very caring and empathetic don’t really know what it’s like, and so instead of wasting time and energy trying to convince other people to understand and validate what you’re doing, give all the support and validation to yourself that you want from other people."

      (Source: health.com)

      Filed under fibromyalgia relationships pain chronic friends helping

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      Dealing with chronic pain

      For people with severe chronic pain like Kelly Young and Teresa Shaffer—both of whom have become patient advocates —coping with agony is a fact of life. Young suffers from rheumatoid arthritis while Shaffer’s pain is linked primarily to another degenerative bone disease.

      Chronic pain is one of the most difficult—and common—medical conditions. Estimated to affect 76 million Americans—more than diabetescancer and heart disease combined—it accompanies illnesses and injuries ranging from cancer to various forms of arthritismultiple sclerosis and physical trauma.

      Pain is defined as chronic when it persists after an injury or illness has otherwise healed, or when it lasts three months or longer. The experience of pain can vary dramatically, depending in part on whether it is affecting bones, muscles, nerves, joints or skin. Untreated pain can itself become a disease when the brain wrongly signals agony when there is no new injury or discernable other cause. Fibromyalgia— a disease in which pain in joints, muscles and other soft tissues is the primary symptom—is believed to be linked to incorrect signaling in the brain’s pain regions.

      Finding a Doctor

      The first step to deal with chronic pain is to find a physician or medical team who can accurately diagnose your condition and work with you to lessen pain.

      "It’s not easy," says Shaffer, "You have to find someone [with whom you can] build a relationship of trust and open communication."

      Dr. Russell Portenoy, chairman of pain medicine and palliative care at Beth Israel Medical Center, agrees. “You need to identify someone with a high level of knowledge and competence, good communication skills and a network of professionals with whom they work, someone who has compassion,” he says.

      Dr. Paul Christo, director of the multidisciplinary pain fellowship program at Johns Hopkins School of Medicine, also suggests looking for someone who has completed at least a year-long certification in pain management. This information can usually be obtained on the doctor’s website or by asking about his or her qualifications.

      Comprehensive Treatment

      Experts agree that comprehensive care—which can involve medications, exercise, psychological therapy, massage, physical therapy, injections and complementary treatments, depending on the patient and condition—is essential.

      "The reason we now call chronic pain an illness is that we recognize that it is more than just a sensation in the body," Portenoy says, "It affects your ability to function as a human being, your relationships, your ability to be productive, to think straight."

      Unfortunately, because they have so often been dismissed as having a problem that’s “all in your head,” many people with chronic pain resist considering talk therapy as a part of treatment.

      "A lot of people have the misconception that what I’m telling them [when recommending therapy] is that their pain is a figment of their imagination," Christo says. "That’s not what we mean. Pain has such an emotional component and psychotherapy is extremely useful in terms of helping patients reorganize and rethink how they interpret it and how it affects their lives."

      Says Shaffer, “Pain encompasses the entire person. It’s not just in your leg or back. It encompasses the entire being of who you are and what you can do and don’t do. So physically, mentally psychologically: you have to take care of all of those things.”

      The Opioid Question

      Although drugs like aspirin, ibuprofen and even some antidepressants can help relieve pain, the most effective medications for most severe pain remain the opioids, likeOxycontin and morphine. Both doctors and patients tend to fear these drugs because of concerns about addiction and overdose.

      However, of patients without a prior history of addiction, less than 3 percent of patients who take opioids regularly for pain will become addicted to the drugs, according to a Cochrane review of studies. Opioids are currently under a cloud because of a sharp rise in overdose death and addiction, mostly resulting from misuse by people who aren’t pain patients. The majority of overdoses occur in people who abuse the drugs along with alcohol and depressants like benzodiazepines (for example,Xanax).

      Virtually everyone who takes opioids on a daily basis will become physically dependent, however: They will suffer withdrawal if the drugs are not slowly tapered. But that is not the same as addiction, which is defined by craving, negative consequences, reduced ability to function and compulsive drug-related behavior.

      Kelly Young avoided opioids for years, relying on high doses of ibuprofen (Advil) and similar drugs. But when the pain became excruciating, her doctor suggested she try anopioid. “I was afraid of side effects,” she says. “One night it was really bad so I took it.” At first, she felt severe dizziness. “But in 30 minutes, the pain started going away and I thought, ‘This is amazing, this is the first time in 4-5 years that I’ve been without pain,’” she says.

      To reduce the dizziness, she cut the dose, starting with a liquid usually given to children so that she could find a level that allowed her to be most comfortable. Neither Young nor Shaffer, who also manages her pain with opioids, has ever developed addiction.

      Two-Way Trust

      Because doctors can lose their licenses or go to prison if they don’t detect addicts who fake pain, patients find themselves in a difficult position when they want to discuss opioid medications. Asking for a drug by name, for example, which might be fine with other conditions, is seen as a “red flag.”

      "When you initially go to an appointment, you don’t want to go in there saying I need medication; that’s the worst thing you can do," Shaffer says. "You want to ask for relief. Explain to the health care provider, ‘This is my life. I can’t get out of bed. I can’t do laundry. I can’t pick up my child. I need quality of life, that’s why I’m here.’"

      Shaffer adds, “You have to be upfront and honest and build that relationship of trust with your doctor.”

      Shaffer also notes that it is the patients’ responsibility to store opioids in a locked box safely: Many people who abuse and overdose on these medications get them from friends and relatives who do not secure them.

      Acceptance and Hope

      Shaffer and Young both recommend a mix of realism, mutual support and fighting spirit when it comes to facing pain. Young runs her Rheumatoid Arthritis Warrior website and Shaffer moderates online discussion groups for people in pain at the American Pain Foundation site. Experts agree that support from family, friends and people facing similar problems—so long as there’s some type of social support—is essential.

      "You have to accept what your life is going to be, but you don’t have to give up," says Shaffer, "OK, yes I have pain but that pain doesn’t own me or define who I am today."

      Filed under fibromyalgia pain chronic dealing with coping dealing with chronic pain

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      How Chronic Pain Affects Relationships

      Living with chronic pain places a strain on all the important relationships in your life. Use these coping strategies to maintain strong ties to your loved ones.

      Medically reviewed by Pat F. Bass III, MD, MPH

      Chronic pain has a ripple effect — not only does it disrupt your life and force you to manage pain, it also changes your personal relationships. Interactions with your spouse, children, family, and friends alter in ways both large and small due to the physical limitations and emotional strain that come from living with chronic pain.

      Part of pain management involves accepting these changes and using them to form better and closer relationships with the ones you love. By learning to better cope, you will be able to manage pain and keep friends and family close.

      Living With Chronic Pain: Maintaining Relationships

      The effect chronic pain has on your relationships depends in large part on the amount of pain you are in, as well as how you relate to each person in your life:

      • Your spouse. Partners of those undergoing chronic pain management face incredible challenges of their own. Intimate relations with a spouse can be difficult, depending on the source and intensity of the pain. A spouse may also have to take on more household and parenting responsibilities as the person living with chronic pain becomes less able to function. Money worries due to hospital bills and decreased income can place additional stress on the relationship.
      • Children. It can be upsetting for young children to see a parent in chronic pain. They may be confused about what’s going on, and anxious because their future seems very uncertain. They may also feel anger that you’re not as available as you once were, or guilt if they assume they did something to cause your pain.
      • Family and friends. People living with chronic pain often withdraw from relationships outside their immediate family, which can lead to estrangement from other family members and friends. Attempts to reach out might be rebuffed if the person is experiencing a pain flare-up or has suffered a decrease in self-esteem as a result of the illness.

      Living With Chronic Pain: Staying Connected

      Coping strategies that can help people living with chronic pain stay close to their loved ones include:

      • Find a communication balance. The people in your life need to know how you are feeling. Staying silent will only cause them to feel estranged from you. On the other hand, sharing too much can cause them to feel overwhelmed, helpless, or depressed. Try to find the right balance. Keep in mind that it will be different for each person in your life.
      • Discuss your sexuality with your spouse. Chronic pain does not preclude lovemaking, but it can mean that more planning is required. Make plans for encounters that fit into your medication schedule and the ebb and flow of your daily pain. Don’t be afraid to experiment with new positions for lovemaking if your favorite position now causes too much pain.
      • Avoid canceling plans with friends. Don’t let chronic pain keep you from interacting with friends. Canceling plans can be disappointing for all concerned, so if you can manage some level of activity with your pain, you should.
      • Take on manageable household responsibilities. If you find yourself unable to perform certain chores that were once your responsibility, replace them with new tasks that you are able to perform. This will keep you an active and contributing member of your family.
      • Ask for help. Giving your loved ones a chance to help you in some way can make them feel closer to you. Often they want to help out, but aren’t sure how to offer for fear of offending you. If you’re having trouble with an activity or chore, ask them to lend a hand.

      Dealing with chronic pain can be frustrating, but communicating and staying close to your loved ones will help you cope with daily living.

      (Source: )

      Filed under fibromyalgia pain chronic relationships living

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      A Pain Management Glossary

      When discussing your pain management plan, your doctor may use words that are unfamiliar to you. Use this glossary to help you understand the medical terminology of chronic pain.

      Medically reviewed by Pat F. Bass III, MD, MPH

      When working with your doctor to diagnose the source of your pain, it will help to understand the terminology used to describe both the types of pain you may be experiencing and the pain management options available to treat it.

      Chronic Pain Glossary

      Ablative surgery: Type of surgery performed on parts of the central or peripheral nervous system to help permanently alleviate pain by affecting the pathways of nerves.

      Acupressure: Complementary medicine technique that uses pressure on certain points along the body to help with pain management.

      Acupuncture: Complementary medicine technique using tiny needles inserted in the skin at certain points along the body to help manage pain.

      Acute pain: Pain that can be extremely intense, but lasts for only a short period of time. Acute pain also has a diagnosable cause and gets better with treatment.

      Adjuvant medication: Drug not primarily designed for or prescribed to help alleviate pain, but that has been found to help with pain management.

      Allodynia: Term used to describe pain that occurs from a situation that doesn’t usually cause pain, like something barely touching your skin.

      Analgesic: Medication specifically designed to manage or help prevent pain.

      Anesthetic: Drug that causes numbness.

      Antidepressant: Medication typically used to treat symptoms of depression, but also commonly prescribed to help manage chronic pain and some of its symptoms, such as insomnia.

      Anxiolytics: Medications that help manage anxiety and are also used to manage pain by encouraging muscles to relax and thereby ease the pain.

      Biofeedback: Complementary medicine technique that trains you to control your body’s unconscious processes like breathing and heart rate, which can help to alleviate pain.

      Breakthrough pain: Pain that occurs suddenly or as a result of a particular activity.

      Central nervous system (CNS): Body system that includes the brain and spinal cord; your doctor may mention your CNS when talking about how pain occurs or the cause of your chronic pain.

      Chronic pain: Pain that continues over many months or even years, and may get worse with time.Chronic pain often persists long after an injury has healed; it may be minor or extreme.

      Complementary medicine: Treatment that falls outside the standard medical approaches. Complementary medicine techniques for pain may include acupuncture, herbs, chiropractic care, and yoga.

      Computed tomography (CT) scan: Diagnostic procedure, using X-ray technology and a computer, that may be used to help diagnose the source of your pain.

      Fibromyalgia: Condition that causes pain all over the body, including muscle pain and stiffness; fatigue is another common symptom of this chronic pain condition.

      Hyperalgesia: Term to describe excessive pain sensitivity.

      Hyperpathia: Term to describe an excessive response to a pain trigger, and pain that continues after the pain trigger is gone.

      Magnetic resonance imaging (MRI): This diagnostic procedure, using magnetic fields, radio waves, and a computer, may be used to determine the source of pain.

      Myofascial pain: Term to describe pain and soreness in the muscles.

      Nerve blocks: Pain management technique that involves injecting an anesthetic into the nerves to numb the area and help alleviate pain.

      NSAIDs: Non-steroidal anti-inflammatory drugs that help to reduce inflammation and manage pain; available in over-the-counter and prescription strengths.

      Opioid: Medication class often prescribed to manage pain; drugs include codeine, morphine, fentanyl, and methadone.

      Peripheral nervous system: This system includes the nerves all over the body that relay messages like pain to the CNS.

      Peripheral neuropathy: Pain caused by damage to or an abnormality with the peripheral nervous system.

      Pharmacotherapy: Medication-based therapy.

      Psychological approaches: Techniques or therapies used instead of or in addition to medication to help you manage your pain; types of therapy include biofeedback, relaxation, stress management, and cognitive-behavioral therapy to manage the emotional triggers of pain.

      Rehabilitation: Treatment plan, often exercise based, used to help you regain function or relieve pain caused by an illness or injury.

      Reiki: Complementary medicine technique that uses gentle pressure from the hands to encourage “healing energy,” and is often used to treat both acute and chronic pain.

      Transcutaneous electrical nerve stimulation (TENS): Pain management technique that uses small amounts of electricity delivered through electrodes placed on the skin.

      Yoga: Complementary medicine technique that exercises the mind and body with meditation, postures, and breathing techniques that can help manage pain.

      The treatment your doctor prescribes will depend on the type of pain you’re experiencing and what’s causing it. Familiarize yourself with this list of pain management terms, and you’ll be better prepared to discuss the options available to you.

      Filed under pain fibromyalgia chronic terms medical doctor

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      Managing Chronic Pain at Work

      More people are trying to stay on the job despite chronic pain. Find out how you can integrate your pain management plan into your workday.

      Medically reviewed by Pat F. Bass III, MD, MPH
      Besides providing the benefits of a regular paycheck, working can be very important to people living with chronic pain and dealing with chronic pain management. Remaining on the job is a tremendous boost to the self-esteem of people with chronic pain. The challenges of work and the social interactions that take place on the job may even serve to distract you from your pain. Research has found that those who return to work enjoy greater success in their pain management.

      A recent survey found that one of every four working people in the United States experiences chronic pain — an increase of nearly 40 percent from a decade earlier, yet nearly 9 out of 10 people living with chronic pain choose to remain on the job rather than stay home. Nearly all said only severe pain would keep them home from work.

      Unfortunately, pain can keep you from being an effective employee. That same survey found that about half of chronic pain patients who remain in the workplace engage in “presenteeism” — they are present at work, but their chronic pain sometimes or often prevents them from performing their job.

      Manage Pain in the Workplace

      Pain management on the job is possible, but requires that employees with chronic pain take a proactive approach to the challenges they face. Effective coping skills include:

      • Advocate for yourself. Don’t feel as though you have to manage pain in silence. Talk to your human resources department about accommodations that could help minimize your pain and maximize your productivity. If you feel comfortable, talk with your boss and co-workers about your pain so they can understand and possibly assist in your pain management practices.
      • Set priorities. Be aware of your limitations and your health, and don’t push yourself in ways that will cause a setback in your pain management efforts. Say no when you need to.
      • Take breaks. Use regular breaks as a way to bring your pain management practices into the workplace. If getting up and stretching helps your chronic pain, be sure to do so. Some people find that taking a few minutes to meditate in a quiet place helps them manage pain. Others squeeze in a short walk during lunch to gain the benefits of additional exercise.
      • Adopt healthy habits. On or off the job, you can help your pain management efforts by eating well and exercising. Inquire about any wellness programs offered by your employer; these can be a valuable source of information about healthy living. And be sure to stay on top of taking your prescribed pain medications.
      • Tweak your workspace. Examine your work area for ways to minimize pain and make you more comfortable. Ergonomic tools like special office chairs, hand rests, foot rests, keyboard trays, and telephone headsets can be tremendously helpful, and many employers will provide these items for you, especially if they understand the benefits.
      • Be aware of pain management options. Ask your doctor about new ways to deal with your chronic pain and if sessions with an occupational therapist could help you make on-the-job pain management strategies more effective. A therapist also can provide exercises and coping skills tailored to your particular ailment.

      Staying at or returning to work can be a helpful component of pain management. By following certain strategies, you can be more productive and experience less pain while benefiting from being around other people on the job.

      Filed under fibromyalgia pain chronic work living coping