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Title: Fibro Stories
Post by: Adminஐﻬ on September 23, 2006, 08:59:03 am
How Does Fibromyalgia Affect Sexual Function?

Having fibromyalgia (FMS) holds the potential to interfere with sex in many ways.

Muscle aches may be increased by pressure during intimacy;
FMS may cause emotional problems, such as depression, poor self-image, anxiety, or fear of rejection. All these problems may make you less likely to feel like having sex.
Some types of drugs that can help fibromyalgia may have side effects that interfere with sexual desire. They benefit one part of the brain but mess up your sex drive.
So what does all this mean for women with fibromyalgia?

A group of Brazilian researchers decided to find out. They recruited two groups of women in their 40s and 50s - half had FMS and half (called "controls") did not. They were asked lots of questions about their sex lives - how often, how satisfying, who took the lead, was there pain or fatigue during intercourse, and more.

According to their report1:

the healthy group were more likely to have had regular sexual relationships in the last six months than the women with FMS (80% vs 64%);
"FMS patients were less satisfied with their current sexual life than women of the control group (55% vs. 21%);"

"FMS patients tend to have more pain during sexual intercourse than control women (74% vs. 36%);"

"FMS patients also presented more fatigue during sexual intimacy than control women (73% vs. 37%);"

"FMS patients presented a lower tendency to initiate sexual intimacy than the healthy women who referred pain during coitus (73% vs. 50%);"
The researchers concluded that "sexuality is greatly impaired in FM patients when compared to healthy controls."

But that's not the whole story - because it doesn't have to be that way.

"We need a multidisciplinary approach - different doctors and social workers - working with patients to provide them with a better quality of life," explained Lais V. Lage, PhD, Assistant Professor of Rheumatology at the University of Sao Paulo, Brazil. She discussed the study in an interview at the ACR meeting where it was reported.

"Medications that interfere with sex drive can be given at different doses or the medication can be changed to one that will interfere less," she explained. A doctor or social worker can help you with your emotional problems - and teach you sexual positions that will be more comfortable, depending on where you are having pain.

And a therapist can help you become more comfortable talking to your partner about your pain and fatigue - to help your partner understand how it changes from day to day - so you can take advantage of the good days together. That way your partner won't feel rejected on the bad days.

But none of this can happen if you don't speak up to your doctor. Doctors often don't ask patients about their sex lives, so you have to raise the subject. Don't suffer in silence.

If your rheumatologist doesn't ask "How's your sex life?", you need to speak up anyway. Say it's not going so well. Use any language you are comfortable with - or even the language of the study - less interested, less likely to start it, less often, more fatigue, more pain, less satisfaction - or use street language if that's what you are comfortable with.

You need to tell your rheumatologist that your fibromyalgia is interfering with your sex life. Tell your gynecologist too. A program should be developed to improve your sex life. It can happen, but you have to speak up! Maybe even bring your partner along for the chat!


Title: Fibro Stories
Post by: Adminஐﻬ on December 09, 2006, 11:10:24 am
Fibromyalgia Pain: It's for Real
Researchers Say Chronic Pain Patients Don't Process Body's Natural Pain Relievers

 There is now "overwhelming" scientific evidence showing that fibromyalgia and related chronic pain conditions are real, but their clinical management leaves much to be desired.

That is the conclusion of two researchers from the University of Michigan who have studied fibromyalgia for several years.

Because there has been no obvious physiological cause for the pain disorder, doctors still routinely dismiss fibromyalgia as being "in a patient's head."

But after reviewing the research, Richard E. Harris, PhD, and Daniel J. Clauw, MD, write that it is increasingly clear that fibromyalgia is a central nervous system disorder and that patients experience hypersensitivity to pain. There also appears to be a fairly strong genetic component to fibromyalgia and related conditions.

"It is time for us to move past the rhetoric about whether these conditions are real, and take these patients seriously as we endeavor to learn more about the causes and most effective treatments for these disorders," Harris and Clauw write in the December issue of the journal Current Pain and Headache Reports.

Brain Imaging Studies

As many as 10 million Americans may have fibromyalgia, according to The National Fibromyalgia Association.

The disorder is characterized by chronic pain throughout the body, but symptoms may also include fatigue, headaches, and problems with memory and concentration.

Brain imaging studies conducted at the University of Michigan and other research centers in recent years show clear differences in responses to pain stimulation among people with and without fibromyalgia.

Compared to people without the disorder, fibromyalgia patients showed increased brain activity in response to pain.

"These studies indicate that fibromyalgia patients have abnormalities within their central brain structures," Clauw says.

Research by Harris, Clauw, and colleagues also suggests that fibromyalgia patients don't process the body's natural pain relievers as efficiently as people without the disorder.

"We think that these may have both a heightened sensitivity to pain and this dysfunction in their analgesic [painkilling] mechanism," said Harris . "It is not yet clear how this all fits together."

National Fibromyalgia Association president and founder Lynne Matallana  that the doctors who treat fibromyalgia patients face a unique challenge.

"This is a new paradigm for medical professionals to understand," she says. "It isn't a virus, or bacteria or inflammation. It isn't a tumor or something else that you can see. It is a problem within the pain-processing center of the central nervous system."

Treatment Options Still Few

While the recent research has done much to improve the understanding of fibromyalgia and related chronic pain conditions, few advances have been made in the treatment of these disorders, Harris says.

The use of medications such as antidepressants can help some patients with fibromyalgia. And regular exercise seems to help many patients.

Acupuncture has been shown to reduce pain in some studies, but not others, he adds.

Matallana says several drug companies are in the later stages of testing several new drugs designed specifically for the treatment of fibromyalgia, which target the central nervous system.

"We are really excited about this research," she says.


Title: Fibro Stories
Post by: Adminஐﻬ on April 03, 2007, 10:55:46 am
Invisible Illness Tough to Treat

COLUMBIA - It can be tough enough for doctors to find cures for some common diseases. So how can they diagnose, let alone cure a disease they can't even see?
Elizabeth Box was an accountant by day, competitive country westerndancer by night. These were two of the many things she loved to do, buttoday she only has the memories.
"I'd end up getting very sick after coming off the dance floor, because we were in competitive, yeah, you can only be sick so many times and then we had to stop," said Elizabeth Box, patient.

Thirteen years ago Box was diagnosed with Fibromyalgia, sometimes called the invisible illness because doctors can't see the disease. Sufferers like Box, though, can feel the disease because of symptoms ranging from constant pain, to sleeping disorders and something called "fibro fog" that causes memory problems.

"I say I have "quarter timers" because a quarter of the time i can't remember things. I think that has frustrated my children. You know Mom's mind used to be pretty sharp and could remember everything, and now it doesn't," said Box.
Many have symptoms so severe the disease forces them to quit their jobs and drastically cut back on their daily routines.

"Learning to self-manage this disease you have to be able to weigh how much pain you're going to be in against what you have to do or need to do or want to do," said Deanna Davenport, nurse.

Fibromyalgia effects about 2% of Americans and is a disease that is most commonly seen in women. There is no cure for this disease but doctors can prescribe medications to lesson the pain and exercise to ease muscle stiffness. But these methods don't work for everyone. One thing that helps people with Fibromyalgia is a support group like the one that meets at the Columbia Public Library.  For many, the support group is a way to openly talk about Fibromyalgia.

"Most people don't want to hear what you're going through but these people here will listen to you," said Jill Sheets, patient.
"We're superwomen anymore you know we're working, we're taking care of the kids, we're hosting the family dinners and trying to be Martha Stewart in our spare time. And Fibromyalgia really does not let you do that anymore. You have to really pick and choose about what's really important to you," said Davenport.

And until there's a cure, the support of friends and doctors helps women like Box and Sheets cope with Fibromyalgia. Tests can't detect Fibromyalgia, so doctors diagnose the disease by ruling out other diseases like Lupus and Chronic Fatigue Syndrome.


Title: Some Doctors, Friends, Relatives Dismiss Sickness
Post by: Adminஐﻬ on April 03, 2007, 11:36:56 am
Some Doctors, Friends, Relatives Dismiss Sickness

It's easy to make personality judgments about people with fibromyalgia and other chronic pain disorders. The patient's current lethargy and inactivity can yield assumptions of lifelong laziness and aversion to work.

Those diagnosed with the ailments say it's a common and frustrating misconception.

"I don't think I have ever met a person with fibromyalgia who is lazy," said Lynne Matallana, president of the National Fibromyalgia Association. "Quite the opposite."

Matallana said a high percentage of fibromyalgia patients are "Type A" personalities who were high-achieving professionals before the illness struck. Matallana, 51, worked as a partner in a prominent advertising firm and was athletic before she became ill in the early 1990s, eventually spending two years in bed after being wrongly diagnosed with lupus.

Local patients have similar backgrounds. Martha Grierson of Winter Haven worked long hours as a sales manager for a large corporation before fibromyalgia prematurely ended her career. Lynn Anderson of Polk City used to show horses in competitions, though fibromyalgia now prevents her from even mounting a horse.

Lakeland's Laura Bodner, another fibromyalgia patient, formerly worked as a firefighting trainer and exercised five days a week. Davenport resident Millie Haddad was a nurse with a side business until being diagnosed with chronic fatigue syndrome, and Teresa Kucera, a Lakeland resident with the same disorder, worked as a medical assistant and said she "used to be like a tornado."

Government medical agencies have recognized fibromyalgia and CFS as legitimate disorders in the past decade or so, but patients say skepticism remains commonplace, especially among general practitioners. Every fibromyalgia patient seems to have at least one story of rude or dismissive treatment from a doctor.

Grierson and other local patients said doctors have suggested their problems are psychological rather than physical.

"I've actually had a doctor tell me I need mental health help, that it was all somatic, which is a kind way of saying it's all in your head," Grierson said.

Bodner, 45, described the hostility she received from a local doctor after seeking a refill of Darvocet, a prescription pain medicine.

"My daughter got real upset because she sees how much pain I'm in, and she goes, 'Can't you just give her something that's going to help her instead of Darvocet?'" Bodner said. "And (the doctor) said, 'I don't even like giving her Darvocet because I think she's overreacting. Somebody who's got fibromyalgia shouldn't be in this pain.' My daughter just went off on the doctor. She was saying, 'You know, I wish you could just have it for one week so you could see what my mother goes through.'"

Matallana said the lack of compassion and understanding from doctors compounds the physical and emotional distress of the illness itself.

"I know in my case I just had the idea if you got sick you went to a doctor and they treated you," Matallana said. "I never, ever imagined someone would question my pain and my inability to function. That was to me almost as bad as enduring the physical symptoms."

~Confusion, skepticism

The transformation of dynamic people into suffering wrecks, without any apparent cause, prompts confusion and questioning. Fibromyalgia patients say even friends, relatives and spouses find it hard to accept the reality of what has been called an invisible illness.

"Even my family was skeptical at first," said Randy Jones, a Dade City resident who receives treatment for her fibromyalgia at Salazar Family Clinic in Mulberry.

"Even my husband, it was like, 'Maybe you just don't want to get out of bed.' "

Jones, 60, admitted she had doubts about fibromyalgia before the illness struck her in 2000, leaving her incapacitated for long periods.

"Nobody walks in your body but you, and how can one person say what another person is feeling?" she said. "Why would I want to do this to myself?"

Grierson likewise has had friends and relatives question her condition.

"Some I thought would understand have accused me of being drug-seeking, of being lazy, of doing this for attention," she said. "It's just awful the things people will say because they don't understand and it's not a common thing and you don't carry scars on the outside of your body. It makes coping with what's wrong with you that much worse because if you hear it enough you begin to think maybe you are a little crazy. That's the insidious thing of it."

If the medical world has been slow to accept fibromyalgia and other chronic pain disorders, it's perhaps no surprise patients describe having difficulties with medical coverage and government disability programs.

Grierson said she faced constant battles with her insurance company over payments for treatments, and at one point when she lived in Pennsylvania a doctor sued her over the plan's failure to pay medical bills. She had equal trouble getting approved for Social Security Disability Income, going through two years of denials before she hired a lawyer who helped her prevail in a court hearing.

Bodner said she has twice been turned down for SSDI since applying last year. She has enlisted a lawyer to help her push for the government supplement.

Anderson has Medicare coverage, but she said the plan doesn't cover massage therapy, the only treatment that offers her significant relief because the effect is temporary. Her sister, Terry Anderson, became a massage therapist after observing Lynn's ordeal, and she sometimes travels from Pinellas County to offer her services.

Haddad, who required a court hearing before being approved for SSDI, said, "It took a long time before I was able to collect disability because they didn't believe this till a lot of doctors started getting the disease themselves."

~'The F-Word'

Dr. Patrick Wood, an assistant professor of medicine at Louisiana State University, decided to specialize in fibromyalgia in part because it was a verboten term during his training. As Wood points out, many diseases now universally accepted - including malaria, asthma and Parkinson's - were previously dismissed or relegated to non-medical categories.

"When I was in medical school, it was the F-word," Wood said. "You didn't even say it around other physicians. I was very intrigued to think there was a medical entity you could choose not to believe in, like a ghost or a fairy. … I've always kind of stuck up for the underdog, and fibromyalgia patients are kind of the underdogs of the medical world."

Despite recent progress, Wood said, "I've been at the same institution for 10 years, and there's still tremendous hostility toward the disorder (fibromyalgia) and toward the diagnosis from people who certainly should know better."

Chronic pain patients and their advocates cite several factors behind the lingering skepticism among many doctors. One is the lack of verifiable causes. The ailments arise gradually in some patients, while others point to a specific traumatic event as the trigger. The trauma can be physical - in Anderson's case, being kicked in the face by a horse - or emotional, such as a divorce or the death of a spouse.

Advocates say the varying intensity of symptoms also fosters doubts.

"The illness can wax and wane, and when people feel better oftentimes they push themselves so others see them up doing what normal people would do, and the next week they're back in bad," Matallana said. "That doesn't make sense; we think of illness as being continuous."

Wood, noting that doctors dislike uncertainty, said many general practitioners are loath to admit they don't have an explanation for a patient's complaints and react by questioning the patient's description.

"I don't think it makes me popular with my colleagues, but we're trained to be little gods and anything that challenges our god-like capacity we dismiss," Wood said. "(A doctor) could say, 'There's nothing to objectively demonstrate you're really sick. How do I know you're sick?' You have to trust the patient's report, which we're often not willing to do when it comes to pain."

Patients say it often becomes clear they know much more about their conditions than the doctors charged with treating them. Haddad of Davenport has attended countless seminars on chronic fatigue syndrome since being diagnosed with it, and she said most doctors dispense merely obvious advice - eat right, sleep right, lose weight.

"A lot of health-care providers feel uncomfortable because of the limits of their expertise," said Dr. Roland Staud, a professor of medicine at the University of Florida specializing in fibromyalgia. "Many physicians wanted these patients to be seen by psychologists and psychiatrists and did not feel equipped to deal with this."


Matallana and others say the gender factor also affects perceptions of fibromyalgia. The preponderance of patients are women, and advocates cite a long history of medical authorities dismissing female- oriented illnesses as forms of hysteria.

"You have to look back on the medical community - it has basically been male-dominated," Matallana said. "I don't think it's something they have done intentionally, but I know when you have experienced something yourself it's much easier to understand what it really is."

Lakeland's Jiwa Farrell was diagnosed at age 16 with lupus, an autoimmune disorder that often mimics fibromyalgia and chronic fatigue syndrome and disproportionately affects women.

"I'm not trying to make this a feminist movement or anything," she said, "but … it amazes me how many drugs they have out for ED (erectile dysfunction) all of a sudden, and we haven't had a new drug for lupus since the '60s."

Fibromyalgia and other chronic pain disorders sometimes occur in family clusters. For example, Bodner said her two daughters, both in their 20s, have been told they have fibromyalgia since she received her own diagnosis, and several other local patients also said relatives share their ailments. The phenomenon might suggest a genetic component to the disorders, but to a skeptical mind it can also raise the prospect of suggestibility.

Confusing matters further, fibromyalgia and related disorders seem intertwined with psychological components. Many patients exhibit signs of depression, leading to a chicken-and-egg question about the relation between psychological distress and physical pain.

"The question that was raised in the past was in what category of medical illness these symptoms would fall," said Staud, the UF professor. "Many physicians believed they would fall in the psychological-psychiatric area, where some physicians believed it was in the purely physical area, and of course the truth is halfway in between, because for 200 years we know there is no mind-body dichotomy. Every illness has these components. To say someone has a purely psychological illness - this is not an up-to-date approach."


Dr. Edward Lubin of Winter Haven's Gessler Clinic said some general practitioners engage in "patient profiling" when they encounter the typical fibromyalgia patient - a middle-aged woman complaining of vague pains. Lubin, a pain-management specialist, also cited the financial pressures that limit the time doctors spend with each patient, discouraging a thorough exploration of the patient's medical history and fostering cynical reactions.

"Some physicians have a sketch in their minds," Lubin said, "so when a patient comes to their office with complaints that can be treated with either antidepressants or narcotics, they immediately have a picture in their mind of a patient, and they either don't explore the nature of it or essentially they punt the patient to a pain management doctor."

Lubin said some doctors dismiss patients with vague complaints of pain as hypochondriacs or malingerers, lazy people looking for an excuse not to work. Lubin said it doesn't help matters that he and other doctors regularly encounter true malingerers, about whom they must make judgments to determine government disability payments.

"Every doctor is faced with being a useful idiot, being a tool for somebody who wants to get out of work," said Lubin, who trained at Yale and Harvard. "I'd rather you fooled me once and then I could say, 'Shame on you,' rather than try to prevent my ego from ever being bruised by assuming everyone whoever asked me for a pill for their pain is a drug-seeker. We can't lose our humanity just because we're afraid of being hoodwinked."


Title: Fibro Stories-'Gray Area' Diseases Prove Difficult to Treat, Understand
Post by: Adminஐﻬ on April 03, 2007, 12:05:16 pm
Physical therapist Brian Brinkerhoff leads Martha Grierson through exercises earlier this month at the Gessler Clinic in Winter Haven.

'Gray Area' Diseases Prove Difficult to Treat, Understand

Back when she was a hard-charging sales manager for a large corporation, Martha Grierson once encountered an employee diagnosed with fibromyalgia, a disorder about which Grierson knew nothing. The man said his condition wouldn't allow him to maintain his challenging workload and requested lighter duties.

Grierson joined her fellow managers in aggressively questioning the man, concurring with the general assessment that he was a shirker unwilling to work as hard as everyone else.

In the subsequent two decades, as fibromyalgia has largely taken over Grierson's life, the Winter Haven resident has often thought of that man.

"I'm so ashamed, looking back, that I was one of the people who sat in on that management meeting and said terrible things," said Grierson, 52. "I'm so sorry for it; I didn't know any better. Little did I know I would be getting the same thing and be given the same response."

Grierson's original skepticism makes it possible for her to understand, if not easier to tolerate, the questioning attitudes many people hold toward fibromyalgia, perhaps the most prominent in a category of illnesses with unclear causes, imprecise diagnoses and no cure or clearly effective treatment options. The maladies - also including chronic fatigue syndrome and lupus - generate controversy and dispute in the medical community.

The ailments, their vagueness defying the preferred precision of the medical realm, attract pejorative labels: "gray-area illness" or "wastebasket diagnosis."

"'Gray-area medicine' can be interpreted as a euphemism," said Dr. Edward Lubin, a pain-management specialist at Winter Haven's Gessler Clinic, "and it leads one to think maybe what we're dealing with is … malingering, maybe we're dealing with something other than a medical condition. But to be fair, the gray area exists in the minds of physicians and the diagnostic process, not in the symptoms and suffering of patients. That's not gray; they're suffering."

Those with the ailments insist their pain is just as real as it would be if they had cancer, diabetes or any other established and scientifically verifiable disease with clear causes and treatment regimens.

"Imagine the aching of a really bad case of the flu, then times it about 10 times," said Polk City's Lynn Anderson, 52, diagnosed a decade ago with fibromyalgia. "Every inch of you hurts. I feel like I'm about 152. There are days when I feel so old. It makes you feel like you've aged 10 years or more."

Grierson talked about her case: "For me, one of the symptoms is feeling my skin is on fire. At times I can't even stand the feeling of clothes on my skin."

Lakeland's Laura Bodner, another fibromyalgia patient, described her quality of life on some days as a negative number on a scale of one to 10. Bodner, who has absorbed dubious reactions from doctors, said three women in a stretch of five houses on her street have the disorder.

"For something that doesn't exist," she said, "there's an awful lot of people with it."

Wayne Furse of Winter Haven, who has been diagnosed with fibromyalgia, says he takes 25 prescription pills a day, including four types of painkillers, which provide little relief. 

diagnosing a mystery

The condition of fibromyalgia appears in the Bible, according to Lynne Matallana, president of the National Fibromyalgia Association, but the term itself - literally meaning pain in muscle and tissues - didn't arise until the 1970s to denote a collection of symptoms including chronic joint or muscle pain, extreme tenderness, profound fatigue and inhibited sleep. The NFA estimates 10 million Americans have the often-debilitating disorder, with women diagnosed at least four times as often as men.

Fibromyalgia presents no markers that show up in a laboratory test. Diagnosis is based on a patient's reported symptoms and a physical exam to detect persistent pain or tenderness in at least 11 of 18 trigger points throughout the body. Symptoms can vary and often fluctuate wildly.

Chronic fatigue syndrome (CFS) shares many of the symptoms of fibromyalgia, and the conditions are considered overlapping, though lethargy rather than pain dominates in the former ailment. The Centers for Disease Control estimates more than 1 million Americans have CFS.

The causes of both remain mysterious, and treatment is directed toward the symptoms - controlling pain and improving function. The ailments are not considered life-threatening, but the symptoms leave some patients unable to work and sometimes bed-ridden for long periods.

"We sometimes refer to them as invisible illnesses because you don't look sick and we don't yet understand the causes," Matallana said.

Dr. Patrick Wood, an assistant professor of medicine at Louisiana State University, said researchers continue to amass evidence supporting fibromyalgia as a legitimate medical condition. Functional magnetic resonance imaging has shown different reactions to cold and pressure in the brains of people with and without fibromyalgia.

Dr. Roland Staud, a professor of medicine at the University of Florida specializing in fibromyalgia, said recent research suggests the patients have a hypersensitivity to pain. It's not that they invent their pain, he said, but rather their tolerance for pain is much lower than in most people.

But people with chronic pain disorders are hardly freakish exceptions, Staud said.

"Fibromyalgia is only the tip of the iceberg," he said. "Chronic musculoskeletal pain is enormously prevalent in the population and … the majority of those don't qualify for the term fibromyalgia but still have chronic pain. So what we're dealing with is a huge problem that's been compartmentalized and underestimated for, really, decades now, and we're just using fibromyalgia as the most extreme representation of these types of pains."

pain, lethargy and fog

The pain itself can be extreme, according to patients. Carol Edwards, a registered nurse specializing in fibromyalgia at the Salazar Family Clinic, was diagnosed with the ailment in 1989 after suffering for four years. She has experienced dramatic improvement through an experimental treatment but said the malady nearly derailed her life.

Edwards, 53, said her feet sometimes burned as if she had walked on scalding coals and her body became so sensitive she couldn't even stand the feel of a sheet on her bare skin. Under such circumstances, she said, sexual relations become impossible.

"It's not unusual at all for patients to tell me they haven't had sex in three to five years," Edwards said. "The inability to have sex is a big issue that's not discussed a lot. Even pain pills don't take away the pain enough that they're able to enjoy it."

Bodner said her husband "is afraid to touch me because he's afraid of hurting me." In addition to pervasive aches, she said she endures "fibro fevers" as well as seizures related to her fibromyalgia.

While many more women than men are diagnosed with fibromyalgia, males are not immune to the condition. Wayne Furse of Winter Haven has the disorder, along with a host of others, including diverticulitis, colitis, diabetic neuropathy, tendinitis, bursitis and heart problems.

Furse, 51, operated a lawn-mower shop before his health problems began about a decade ago. He had to give up the business and eventually went bankrupt. He said he takes 25 prescription pills a day, including four types of painkillers, which provide little relief.

He said a rheumatologist diagnosed him with fibromyalgia based on his symptoms of widespread body pain and promptly told him the condition could not be treated.

"After that one doctor gave me that (diagnosis), several other doctors, they all just laugh when I say that," Furse said. "They say, 'That doesn't mean anything. It means he (the doctor) doesn't know what's wrong with you.'"

Millie Haddad of Davenport, diagnosed 16 years ago with chronic fatigue syndrome, said she now sleeps 18 to 20 hours a day. Lakeland resident Teresa Kucera, whose chronic fatigue overlaps with fibromyalgia, said she tries to accomplish one task a day, such as cleaning the bathroom. Kucera is bothered by "fibro fog," a common symptom of fibromyalgia that forces her to write notes to remind herself of the most basic matters.

"It's like your motor quits going," said Kucera, who is 54 but said she feels more like 90. "You just find yourself like, 'What happened?' It's just a slow decline."

holding on

Chronic ailments with no clear prospect for reversal can have a devastating effect on quality of life, and depression among patients is common.

"I have no meaning to my life," Kucera said. "It's just read and think about things I'd like to do. I would imagine there's a lot of suicides from these things; I think a lot of people give up and find no worth in their lives. Sometimes I think it would be just easier to die. It's not something you can just think yourself out of. I try to hold onto God; that's what keeps me from completely going over the edge."

Grierson managed 23 employees in her previous corporate job, dressed in business attire and had the use of a company car before fibromyalgia prematurely ended her career. She used to draw her identity largely from her career, and when that ended, she was left wondering who she was.

Bodner, who was forced to give up her work as a security trainer, said suicide has crossed her mind.

"I've gotten to the point I've thought about it quite a few times," Bodner said, "and then my daughter will bring my grandsons over or my husband will come in and put his arms around me, and then it's like, 'Yeah, it's worth it (to live).'"

Edwards, the nurse, said she has coaxed several suicidal patients into handshake agreements to give her treatment method six months to show results.

The National Fibromyalgia Association doesn't keep statistics on suicides, but Matallana, the group's president, said she knows of people who took their lives because of the ailment. But she said gradual medical acceptance has lessened the sense of desperation.

"Once the diagnostic criteria were accepted and once people began to understand this illness … you don't hear of people feeling as hopeless as you used to," Matallana said. "I haven't heard of a suicide case for many years. I think we are living in a time when there is much more hope. That's why we work so hard … to let people know they are not alone, to hang in there, things will get better."

Patients say Polk County lacks an active support group for people with chronic pain disorders, but some find comfort in online communities. The confounding nature of the ailments, and the persistent skepticism surrounding them, creates a need for validation in many patients.

Grierson has discovered an informal support group among fellow patients at her doctor's office.

"I began to meet these wonderful women you would see week after week in the waiting room," she said. "You definitely depend on seeing each other, and you share these intimate details of your life. You find out they're feeling the same way, and it definitely helps an awful lot. That helps (guard) against that feeling that it's all in your head."

Grierson said she often thinks of her first experience with fibromyalgia in the early 1980s, when ignorance about the ailment made her unsympathetic toward an employee in her company who had recently been diagnosed.

"I look back and just shudder about the way I spoke to that poor young man," she said. "I was a horrible human being, and today I just can't imagine treating somebody that way. It (fibromyalgia) has made me a much better human being. If I had to lose everything and go through a lot of suffering to gain that compassion, as trite as it sounds, I think it had to be worth it."

Still, she added, "I wish there had been an easier way to get there."


Title: 'I feel a prisoner in my own home'
Post by: Adminஐﻬ on April 13, 2007, 08:06:30 pm
'I feel a prisoner in my own home'

A disabled Carrickfergus woman who has been waiting more than two years for the Housing Executive to install a ramp in her garden says she feels trapped in her own home.

Tammy Haldenby suffers from severe Fibromyalgia - a debilitating condition which affects her muscles and joints.

While she is not confined to a wheelchair, the 32-year-old relies heavily on her wheelchair for mobility.

Tammy says that when she moved into her house, in Castlemara Drive, two years ago, she asked the Housing Executive to install two ramps at the back door so she could have access to her garden.

But nothing has been done and Ms Haldenby says she feels like she is a prisoner in her own home.

"When I moved in, the house was a mess," she said. "There was a hole in the floor and the wall, there was heating loss and no ramps.

"While they have fixed the bathroom and the holes they still have not fixed the heating or installed the ramps.

"I have carers and great family support, but I want to be able to go outside on my own.

"It is a basic human right. They are meant to provide me with basic provisions and they haven't."

The stress of being confined to her house has taken a big toll on the young woman.

"I am just physically and emotionally tired from all of this. No one should have to go through this. I just want to be able to go outside."

Last night a spokesperson for the Housing Executive said for the past year the organisation had been working with an occupational therapist to help resolve access problems at Ms Haldenby's home.

"Unfortunately ,the recommendations made by the O T last year, for the provision of a ramp and handrails at the property, as a safe solution, were not accepted by Ms Haldenby and so we have been unable to proceed with the work," the spokesperson said.

"Following confirmation this week from the O T department that their recommendations have now been accepted, we have issued instructions to the contractor and expect that the adaptation will be carried out as soon as possible, within the six-week response time for work of this nature."

Title: Pageant winner sets disease in her sights
Post by: Adminஐﻬ on April 25, 2007, 09:51:30 am
Pageant winner sets disease in her sights

It seems fitting that Jennifer Phillips, the new Mrs. Virginia United States, celebrates her birthday on May 12. It's also Fibromyalgia Awareness Day, and a goal for her reign will be to raise consciousness of the debilitating disease.

"When I found out that the awareness day was the same day as my birthday, I knew I had a purpose," she said.

First diagnosed in 1996, Phillips, 39, said she has learned to control and maintain the disease and mentors others in the community who suffer from it. Fibromyalgia is a chronic disease that causes muscle, joint and bone pain, fatigue and other symptoms.

Phillips was crowned at the state pageant in Richmond on April 14. In addition to winning the title, she won the interview and evening gown competitions and was named Mrs. of the Year, a contest where husbands write essays about their wives.

Jeff Phillips, her husband of 11 years, is "the greatest guy in the world," she said. They live in Providence Forge with their sons, Gray, 9, and Ryan, 6.

Phillips will represent Virginia in the Mrs. United States pageant July 8-13 in Las Vegas. She's busy shopping for gowns and interview suits, while working at Measurement & Control Products in Williamsburg and finding time to play outdoors with her sons.

Now that she has fibromyalgia under control, she said, she's regained her life.

"I love riding bikes, Rollerblading, anything outside, because I couldn't do it for so many years."

Post by: Adminஐﻬ on May 30, 2007, 05:28:36 pm
Living with Fibromyalgia

Frances Bailey hurts.
Her hands hurt, her neck throbs and her back aches. Some days she can't drive her car.
Other days, she can barely move. She has given up her favorite sports of golf and tennis solely because she is in too much pain.

For years, Bailey has suffered. Doctors didn't know what was wrong with the Mountain Home resident. Tests showed nothing. No bumps or bruises were visible. It could have all been in her head for all they knew.
Just recently, Bailey's ailment was given a name — fibromyalgia.

Fibromyalgia is a chronic condition characterized by frequent pain and fatigue and affects between 6 million and 10 million people in the United States, according to the National Fibromyalgia Association, a nonprofit organization dedicated to improving the life of people with fibromyalgia.
Its cause is unknown and is more common in women than men.

Symptoms of fibromyalgia vary but pain, fatigue, sleep disturbances, irritable bowl syndrome, numbness and heightened sensitivity to lights, touch, odors or noises are usually consistent with the condition.
Bailey said it was those symptoms that clued her in to fibromyalgia.
"I've had it for 15 years, but I was just recently diagnosed," she said. "I knew I had it. I had the symptoms."

There currently is no cure for fibromyalgia, but patients do have treatment options. Medication, hydrotherapy and exercise are the top choices, many people with fibromyalgia say.
Other things that may help with pain include physical therapy, acupuncture, relaxation techniques, chiropractic care, therapeutic massage, hot packs and regular sleep schedules, according to the Fibromyalgia Network.

Bailey said she uses medication to control her pain as well as exercise. She also bought a hot tub to ease her symptoms.
"When I'm in horrific pain, I get in that," she said of the hot tub. "I exercise and try to stay as active as I can."
Not all of the symptoms of fibromyalgia are physical.

Licensed Professional Counselor Kathy Bauer said many people who have fibromyalgia suffer from depression.
Bauer began a fibromyalgia support group in December at Baxter Regional Medical Center's Women Health Education Center to combat depression of her clients. She said the group originally had 10 members but participation has increased to more than 30 people. The group meets on the first and third Mondays of the month.

"It's a sharing of symptoms, frustrations and challenges," she said.
Ellen Doshier of Yellville said the support group has provided her with an outlet for her concerns and complaints. It's also where she learns more about fibromyalgia, she said.
Doshier said books have been a help to her. She said she reads books and articles to research what she can do to help with her condition.

Ellie Mehring of Midway also uses books and other publications to find out more about fibromyalgia. She said one of her favorite books is "The Complete Idiot's Guide to Fibromyalgia."
"It's been wonderful," she said of the book. "It's a good book that gives you a lot of information about fibromyalgia. I'm glad I found it."

Bauer said she strives to show the support group participants that sharing their stories can bond them together.
"We try to end the meetings with a positive note because we don't want it to become a gripe session," she said. "With fibromyalgia, you really can't see what's wrong. But they really do have pain, and they are not making it up.
"They are not crazy. I think it is important for people to realize that."

Title: Re: Fibro Stories
Post by: Adminஐﻬ on June 17, 2007, 09:15:33 am
Nashua Community Adult School 2007 graduate Heather Charles beams after receiving her diploma at her graduation, which was held at Nashua High School North on Friday.

Heather Charles could not get out of bed.

On a school day in 2006, much like many others before it, the Nashua High School North honors student set her alarm for 5:30 a.m. to have extra time to get ready for her junior-level classes.

But instead of bounding out of bed when the alarm sounded, Charles found she couldn’t move at all.

“My body hurt all over,” Charles, now 18, said.

“My bones hurt and my joints felt stiff.”

Charles’ mother, Sheila Charles, thought her daughter was just fighting a virus, but when the same scenario repeated itself morning after morning, she took her daughter to be tested. All the tests came back normal, despite Charles’ symptoms, which only got worse as the days went by, leaving her bedridden much of the time.

“This didn’t make any sense,” the senior Charles said, recalling her frustration as she watched her daughter’s stellar high school record get ruined with every school day missed and every class dropped.

“I had an honors student who had no problems and loved school, and then all of a sudden, I’ve got a child that can’t wake up in the day.”

Eventually diagnosed with Fibromyalgia, Charles struggled with her illness throughout the rest of her junior year, throughout the summer, and into the next year. By the end of this year’s first quarter, Charles chances of graduating with her class were blown, and she began looking for an alternative that would at least allow her the opportunity to get a high school diploma.

The Nashua School District Community Adult School proved to be that program.

Charles was one of 87 students Friday night to graduate with a diploma from the night school program. It is the school’s largest graduating class in 20 years.

“Each of you here today has overcome many obstacles, both academic and personal,” adult education director Michelle Papanicolau told the students who clutched their diplomas at the ceremony inside the Nashua High School North auditorium.

“I wish that every one of you continue to persevere and obtain your dreams, as nothing is unattainable,” she said.

The students, many wearing purple graduation gowns, others in gowns of other colors, hugged their teachers and family as they filed out of the packed theatre, some occasionally stopping to pose for photos.

Although some of the graduates were students who had previously dropped out of high school, many others were transfer students like Charles, who for a variety of reasons found they could not attend school in the day.

“So much weight was taken off of me,” Charles said of the relief she felt after starting night school.

“It really killed me that I couldn’t go to school; I felt guilty every morning.”

Charles’ mother is also grateful a program was available to give her daughter the schedule she needed to graduate.

“It is a good option for people who are having difficulty making traditional school work,” Sheila Charles said.

But choosing the option isn’t usually easy for many of the transferring students, according to night school teacher Amy Woods.

“A lot of people have this notion that, well, you do it in 12 years. You get it done, and when their path deviates from that, it is tough for your average 16- to 17-year-old to say ‘Hey, I am not going to be on the same path as everybody else,’ ” Woods said.

Woods, who also teaches day classes at Nashua High School North, began teaching night classes for the Salem School District in 1998 and switched to teaching night classes in Nashua when she came to the district three years ago.

Woods said she is continually amazed at the stigma that can sometimes accompany a student’s struggle to get their high school diploma at night.

“To me that is completely erroneous, because if you are in night school, you are taking the steps on your own to make sure that you have the same tools as everybody else,” Woods said.

Although most of the students are in their teens, Woods said most are very serious students who are intolerant of others who waste their class time, partly because they are paying to be there. Class costs range from $150 to $325.

“Your typical night school student’s attitude does not take for granted the same types of things that your day school students do,” Woods said.

“A lot of the behavioral or maturity concerns that you see in the day have a tendency to disappear because you don’t want to be “that person” in front of people who are really committed to getting their work done, learning something, and then moving on.”

For Charles, moving on will mean taking some time off to get better before going after her goal to become a first-grade teacher.

“I’m just going to try to take care of my health so that I can go to college and accomplish something without having to worry about what happened in high school.”


Title: Re: Fibro Stories
Post by: Adminஐﻬ on July 07, 2007, 07:54:24 am
Dealing with the constant pain

Sharon Ostalecki used to be an avid runner.

But after fracturing her hip almost 20 years ago, running for Ostalecki has never been the same.

The 50-year-old Novi resident developed fibromyalgia, a chronic condition characterized by widespread pain in muscles, ligaments and tendons throughout the body.

Ostalecki said at the time she developed fibromyalgia, many doctors did not recognize the condition and categorized it as a psychological disorder.

"I was told I had everything from depression to hormones to even bad karma," she said. "At that time I knew there was something wrong. You just don't hurt like that all the time."

Ostalecki said she went to several doctors and finally met with a doctor from Beaumont Hospital in 1989 that understood fibromyalgia.

While working on her Ph.D., Ostalecki said she started doing more research on fibromyalgia and understanding the condition better.

Today, as a nutrition specialist, working with chronic pain patients on nutrition and pain management at her office in Novi, Ostalecki is trying to spread the word about fibromyalgia and its affects on people suffering from the condition.

With help from several physicians from Harper, Beaumont and Providence Hospitals, along with several fibromyalgia patients, Ostalecki put together a book for those looking to learn more about the condition.

Getting the facts straight
Ostalecki described the pain of fibromyalgia, as aches all over, much like the flu. She said the pain can be mild at times or sometimes unbearable.

"It's like a charley horse. Or like someone is sticking a hot poker in your back," she said. "Your muscles will ache, you might have tingling in your fingertips and headaches."

In, "Fibromyalgia: The complete guide from medical experts and patients," Ostalecki said the book does not need to be read cover to cover.

"Simply pick a chapter or two and get fast and reliable answers," she said. "It takes an average of five years to diagnose fibromyalgia because, believe it or not, many doctors are still not adequately informed.

"(The book) is a presentation from those who are living with the disorder and from those who treat it."

Dr. Peter Ianni, Ph.D., director of behavioral medicine at Tricounty Patient Consultants with offices in Farmington Hills, Royal Oak and soon in Novi, said there is no cure for fibromyalgia, just ways to manage it.

"It's a genetic disorder that can be triggered at any time," he said. "(Fibromyalgia) can be triggered by an accident or fall or illness in which part of the body is injured.

"The brain responds to any sustained pain in the body by contracting muscles in the injury. The brain is trying to pull away from the pain, like your hand quickly pulls away from a hot stove."

Ianni, who contributed his expertise to the 330-page book, said patients suffering from fibromyalgia could have either a mild, moderate or severe case of the disorder.

He said a mild case could be kept at bay by taking over-the-counter pain medications like Tylenol or Aleve.

"Moderate cases bring greater amounts of pain and it's probably best to see a doctor," he said. "In severe cases, very few are able to work. Pain can be very severe and very strong medicines are needed to keep it under control."

Seeking help
According to the National Fibromyalgia Association, the condition is seen in 3-6 percent of the general population and is most commonly diagnosed in people between the ages of 20 and 50.

"The most important thing with any disease is to educate yourself," Ostalecki said. "Go into your physician's office as an informed patient.

"As patients, we can't call our doctors every 10 minutes. We will never be pain free. We have to learn to manage our conditions and live with it the best we can."

Ianni said no two people living with fibromyalgia are the same.

"It's hard for the average person to understand severe pain," he said. "This book was written to help patients and their families understand the condition better.

"The average person needs it broken down into plain English and we've tried to do that."

Ianni said the book, published May 17 by Massachusetts-based Jones and Bartlett Publishers, will help those with the disease distinguish the differences between mild, moderate and severe cases and offer insights on ways to cope with it.

Ostalecki said she will continue helping patients deal with fibromyalgia and pain, and hopes more people will understand the condition with the help of her book.

"My fulfillment is helping people with fibromyalgia," she said. "People need to learn that this cannot run our lives. You have to have a purpose or the pain becomes your life."

Title: Coping with the crippling pain
Post by: Adminஐﻬ on August 17, 2007, 12:23:40 am
Coping with the crippling pain


CAN you imagine being crippled with constant pain for years and yet never being diagnosed?

That's the horrific fate that thousands suffer before being told they have fibromyalgia.

And as the condition means sufferers show no physical sign of illness, it leads to feelings of frustration and isolation.

 JANET FARR has been in constant pain for more than 30 years.

It has limited her ability to work and she is unable to do even simple tasks like housework or carrying shopping.

And one of her biggest regrets is that she can't pick up or look after her grandchildren.

"Looking back it's amazing I coped," said Janet, who worked part-time for the NHS and has five children and 22 grandchildren.

"I remember crawling across the floor to put the kids' dinner on, I was in so much pain I couldn't stand.

"But I suppose you have to get on with things. You find ways of coping because you have to."

Yet to look at her Janet is the picture of health and certainly appears far younger than her 68 years.

It is only her halting gait and reliance on a stick which gives the game away.

For Janet suffers from osteoarthritis and fibromyalgia, an incurable condition which causes pain and fatigue.

Although diagnosed with osteoarthritis in her 30s she was not officially diagnosed with fibromyalgia until last year.

Looking back she believes she was already suffering from fibromyalgia when the osteoarthritis was diagnosed.

"I had spinal surgery for the osteoarthritis when I was 40 but the pain was still there," said Janet, who is married to John, 67, and lives in Upper Stoke, Coventry.

"The problem was no one seemed to be able to find out what was wrong with me and I think that is a common problem with fibromyalgia sufferers.

"I went to see a neurologist because I was getting dreadful headaches but he couldn't identify a cause, then I saw a heart special-ist because of the pains in my chest but again there didn't seem a reason for it.

"So you get passed around without anyone being able to diagnose the problem."

For Janet the fibromyalgia made her feel like she'd been bashed all over with a cricket bat.

Sometimes it was all she could do to drag herself out of bed, aching from head to toe.

As the years passed and the agony continued Janet, like many fibromyalgia sufferers began to doubt herself.

"You start to wonder whether there is anything wrong with you, whether it might be all in your head.

"And because people can't see the fibromyalgia physically and because you look well they don't believe there's anything wrong with you.

"People just don't understand, it is very frustrating. I know from talking to other sufferers that it can take years to be diagnosed and I'm sure there are people out there with fibromyalgia who haven't been diagnosed and don't even know they have got it.

"A lot of the women I have spoken to cried when the diagnosis came. I could actually give the illness a name instead of wondering what was wrong with me."

Janet was eventually diagnosed last year and has since been on a physiotherapy course at the new University Hospital.

It was thanks to the course that Janet decided to set up a local support group.

Having met many others in the same position as herself she realised a group where sufferers could discuss their problems and exchange ideas was vitally needed.

"The course was great but when it came to an end, it was a case of 'now what'.

"I met a lot of younger people as it seems sufferers are being diagnosed much sooner these days and I thought it would be useful to set up a support group because I have the life experience of fibromyalgia."

Janet is seeking interest from fellow sufferers and hopes to hold the first meeting towards the end of September.

"Fibromyalgia is a very difficult illness to live with. It affects all sorts of things. Even simple, everyday tasks like housework are a nightmare. Now one of my granddaughters does it for me.

"You have to have a very positive attitude when you have fibromyalgia. You have to keep going and maybe instead of doing something physical go in another direction, I did counselling.

"I take painkillers but only when the pain is excruciating as there is a danger of becoming addicted to them.

"I can stand a lot of pain, but with fibromyalgia I have to. I have to pace myself. Every morning I think to myself, now how do I feel today, what can I do.

"My husband John is recovering from open-heart surgery and he has said to me he believes I have experienced more pain than he has.

"But because he has had an operation and bears a physical scar people find it easy to be concerned about his wellbeing.

"People with fibromyalgia don't want sympathy, we just want others to under-stand what we go through."

*FIBROMYALGIA is a condition which causes widespread pain and severe fatigue. It is defined as widespread pain for at least three months experienced in at least 11 points around the body.

*MOST people have tender points around the body and if enough pressure is applied most people will find it uncomfortable but in people with fibromyalgia there is a change in the threshold at which pressure cause pain and many of these points can become extremely tender.

*THE pain is most often experienced as aching, stiffness and tiredness in the muscles around the joints.

*IT may feel worse in the morning or as the day goes on or with activity and may affect one part of the body or several different areas.

*SUFFERERS may have a general lack of energy or muscular fatigue or loss of stamina which can make everyday tasks difficult or impossible.


Title: Re: Fibro Stories
Post by: Adminஐﻬ on September 03, 2007, 08:46:33 am
Ellen Comstock is living with fibromyalgia, an illness characterized by pain, fatigue and what Comstock describes as a mental “fog.” Comstock’s husband, Harry, loads their car with the scooter Ellen uses on shopping trips.

For the millions of Americans living with conditions like fibromyalgia and chronic fatigue syndrome, illnesses with no visible symptoms can be painfully real.

Just because something isn’t visible on the outside does not mean it is any less real on the inside.

This is a painful truth that individuals with “invisible” illnesses such as chronic fatigue syndrome and fibromyalgia live with daily.

These conditions, which are marked by daily pain and fatigue, are hard for doctors to diagnose and thus often go undetected for years, leading to frustration and despair. In addition, since those affected by the disease often look fine to those around them, after a while friends, family and coworkers can start losing sympathy.

And even when a diagnosis is made, the syndromes are not curable. There are medications and lifestyle changes, however, that can make living with the conditions more bearable.

According to the Arthritis Foundation, around 2 percent of Americans — around 6 million — are afflicted with fibromyalgia.

The Centers for Disease Control and Prevention estimate that 1 million Americans have CFS. These numbers may be deceiving, however, because the CDC estimates that less than 20 percent of those with CFS have been diagnosed. The low rate of diagnosis shows a need for increased understanding of CFS among individuals experiencing symptoms of the illness, the general public and health care professionals.

‘I just want to live life

as best I can’

Ellen Comstock of Tecumseh knows all too well what it’s like to live with an invisible illness.

The smooth skin on her face and her dark brown hair make Comstock, 48, look like any healthy middle-aged woman. But because of fibromyalgia and several other illnesses, she thinks and feels like someone far beyond her years.

Comstock has been diagnosed with fibromyalgia and said she experiences not only daily pain and discomfort but difficulties concentrating. Her job as a part-time secretary at Adrian College has suffered because of what she calls a mental “fog” she feels continually throughout the day.

“It’s really affecting me mentally,” she said.

She said at her request the college has tried to accommodate her disabilities, supplying her with new office furniture such as a chair with cushioned arm pads and a stool where she can put up her feet.

The syndrome has affected every area of Comstock’s life and makes daily tasks ranging from going to work to getting groceries to vacuuming seem challenging. When she goes shopping, she uses a scooter to ease getting around and needs someone to put the groceries in her trunk so she doesn’t have to lift.

Simple household chores like vacuuming have to be broken into parts. For example, she can never vacuum the whole house at one time but has to break the task into several jobs. And when she wants to go shopping at the mall, she needs to bring along a scooter as standing for too long causes pain.

For Comstock, experiencing pain is nothing new. She said she started feeling pain in her feet when she was 12 and would use a warm blanket to help ease the discomfort. As the years passed, the symptoms continued to spread to other parts of her body. For several years, she said, she hardly slept and she still struggles with a restful night sleep, which is a telltale sign of fibromyalgia. In addition to the syndrome, she deals with chronic fatigue syndrome, abdominal pain, restless leg syndrome and endometriosis.

Her combined illnesses have often lead to feelings of depression and hopelessness. But three years ago, when she was officially diagnosed with fibromyalgia and started receiving some treatment, her outlook improved.

Now she’s in occupational therapy at Carter Rehabilitation in Tecumseh and she’s learning ways to cope with everyday life. She said she is taking afternoon naps, staying active as much as possible through a swimming wellness program and managing her daily activities. She’s also part of a fibromyalgia support group.

“It has helped me a lot,” Comstock said. “It makes a big difference.”

Comstock said it is difficult to feel like she can’t do everything she’d like to, and her social life has suffered because of it. Some of those around her tend to lose patience with her problems, especially since they aren’t visible to the outside world. Her faith and desire to live as normal a life as possible keep her going.

“I just want to live life as best I can,” she said.

Available treatments

Sally Mulnix, an occupational therapist with the Carter Rehabilitation Center, has seen first hand the effects of fibromyalgia but she has also seen how treatment can help. She said she usually works more with fibromyalgia patients than with those who have CFS. When she first gets new patients, Mulnix said she works with them to find what will be the most effective treatments and techniques to manage symptoms.

“I learn what works best for them,” Mulnix said.

For some patients, time in a warm pool is soothing and works to ease the pain that is often present in the muscle and soft tissue. Mulnix also recommends slow stretching. It is important, however, that patients do not strain themselves or exert too much energy as they will pay for it later.

Finding a balance between keeping active and exhaustion can take time, she said. Mulnix also recommends that her patients join a support group.

Fibromyalgia is an arthritis-related condition that is characterized by generalized muscular pain and fatigue. The term “fibromyalgia” means pain in the muscles, ligaments and tendons. This condition is referred to as a syndrome because it is a set of signs and symptoms that occur together. The typical fibromyalgia patient is a woman between 30 and 50. Prevalence increases with age but the syndrome is also seen in children.

Fibromyalgia is a confusing and often misunderstood condition since people with fibromyalgia often look healthy and have no outward signs of pain or fatigue. Because its symptoms are quite common and laboratory tests are generally normal, people with fibromyalgia were once told that their condition was “all in their head.” However, medical studies have proven that fibromyalgia does indeed exist. The difficulty diagnosing fibromyalgia is that there is no clear test to determine the condition. No evidence of it appears on X-rays or in laboratory test results, and there is nothing telling that shows in a blood test.

Rather, fibromyalgia is diagnosed by the identification of symptoms and the exclusion of other conditions. In 1990, the American College of Rheumatology, the official group of doctors who treat arthritis and related conditions, developed criteria for the diagnosis of fibromyalgia. Mulnix said it is usually diagnosed when the patient displays at least three months of widespread pain — on both sides of the body and above and below the waist — in addition to having pain in at least 11 of 18 “tender-point” sites.

Even though it is considered an arthritis-related condition, fibromyalgia is not truly a form of arthritis because it does not cause inflammation or damage to the joints, muscles or other tissues. It is, however, considered a rheumatic condition because it impairs the joints and soft tissues and causes chronic pain. The main symptoms of fibromyalgia include pain and tenderness as well as fatigue and sleep disturbance. In addition to this generalized feeling of aching all over, people with the syndrome experience tenderness to the touch.

Michelle Cherne, a physical therapist at Onsted Total Rehab, said fibromyalgia patients benefit greatly from an exercise program. She recommends, however, that patients should not jump right into a demanding program but rather start slowly and then build their strength in order to prevent additional fatigue. Strength training is an especially vital component of an effective workout. While exercise is not a cure, she said it increases endorphins and promotes better sleep.

“It helps manage the symptoms,” Cherne said.

Although fibromyalgia has no cure, it isn’t a progressive disease, meaning that it will not get worse over time and it’s never fatal. In one of the classes Mulnix teaches, she said she works with patients to help them think of ways to make daily activities simpler and more efficient to prevent getting worn out.

With a treatment plan that integrates exercise, rest, stress relief, coping skills, good nutrition and medications, people with fibromyalgia can live productive lives. A few medications that can help include analgesics, anti-inflammatory drugs like aspirin or ibuprofen, muscle relaxants and anti-depressants.

“It’s not curable, but it’s treatable,” Mulnix said.

Most people with fibromyalgia experience chronic fatigue and tire quickly after only mild exertion. In fact, about half of individuals who meet diagnostic criteria for fibromyalgia also meet the diagnostic criteria for chronic fatigue syndrome. For many people, the fatigue can be more debilitating than the pain.

Attitude is everything

Cathy Jenkins, 52, also has fibromyalgia. Diagnosed in 1998, Jenkins said she’s had symptoms of the syndrome since her 20s. A sledding accident as a young girl made her more susceptible to the conditions that are now a part of her life.

For Jenkins, fibromyalgia is “just one more” of her concerns. She also has arthritis and degenerative disk disease, all of which cause her pain. Instead of becoming discouraged, however, she lives her life to the fullest and doesn’t let the ongoing pain prevent her from doing what she loves most: helping others.

Jenkins has taken her first-hand experience with pain and turned it into something positive. For 17 years, she has worked as a massage therapist and owns Therapeutic Massage in Adrian, where she helps others with similar conditions. She said she works regularly with around 10 individuals with fibromyalgia. Massage alleviates pain and stress, relaxes muscles, promotes sleep and prevents depression.

“It decreases pain and improves circulations,” Jenkins said.

Jenkins said there are other symptoms in addition to the tender points that can signify fibromyalgia, and she tests her patients for conditions such as hypoglycemia and TMJ. If she thinks a patient may have fibromyalgia, she will recommend that the individual see a rheumatologist for an official diagnosis.

Massage and exercise are key factors to keeping symptoms of fibromyalgia under control, Jenkins said. Even if patients have to start with simple stretching, she recommends they do what they can and build on that exercise routine.

“If they do these things, they will feel better,” she said.

Every morning, regardless of how she feels, she wakes up early so she can ride her stationary bicycle 15 miles. She also prays every morning and said her faith has been a critical aspect of how she deals with her pain. Regular movement seems to keep symptoms in check, but “flare-ups” still occur, bringing on an onset of aching, burning, stabbing and tingling sensations throughout her body — usually on the left side.

Several factors can trigger these flare-ups, including a poor diet, the weather, stress and hormone levels. Jenkins said anyone with fibromyalgia should stay away from caffeine, alcohol, smoking and most sugars as they can all trigger symptoms.

She promotes a diet high in protein, drinking a lot of water and taking supplements such as omega-3 fatty acids and B-complex vitamins.

But most importantly, it seems vital to keep a positive outlook. Through a proper diet, exercise and massage, symptoms can be managed but they will never go away completely. When patients come in for a massage, Jenkins said she always tries to make them smile, even if they’re having a bad day. She’s made it her mission to serve as a role model for those she works with and an example of how one can still live a full life despite the pain.

“We try to laugh,” Jenkins said.

A similar illness

According to the Centers for Disease Control and Prevention, chronic fatigue syndrome is marked by extreme fatigue that has lasted at least six months and is not the result of effort or exertion.

Both Cherne and Mulnix said they see more fibromyalgia patients than CFS patients, but that the two illnesses often go together. In addition, the symptoms are quite similar.

CFS is not substantially relieved by rest and causes a substantial reduction in daily activities. In addition to fatigue, CFS includes the following symptoms: worsening of symptoms after physical or mental exertion, lack of sleep, substantial impairment in memory or concentration, muscle pain, pain in multiple joints, worsening headaches, sore throat and tender neck or armpit lymph nodes.

The CDC states that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, congestive heart failure and similar chronic conditions. Symptom severity varies from patient to patient and may vary over time for an individual patient. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms with which people with the illness must contend.

The illness has proven to be both complex and mysterious, and there is still no known cause or cure. However, there is abundant scientific evidence that CFS is a real biologic illness, not a psychiatric condition, and there are treatment options that can help patients manage symptoms, cope with the impact of the illness, improve function and manage activity levels. Research has shown that it is important for individuals with the illness to “avoid extremes,” meaning they should neither be inactive or overly active, and should try to keep up a regular exercise regimen that does not aggravate their symptoms.

Jeff Gulch, a physical therapist with Total Rehab at Bixby Medical Center, said he has worked with patients who have CFS. He said those with the syndrome often have “more bad days than good.”

And while symptoms can be similar to fibromyalgia, those with CFS generally have a much harder time with physical activity and can easily exert too much energy, leading to days of increased pain and fatigue.

Despite potential setbacks, Gulch stressed the importance for patients to still make an effort to stay active. He recommends CFS patients do mild exercises while either sitting or lying down. Aquatic exercise is also a good option.

“We try to keep it as painless as possible,” he said.

With time, Gulch said exercise often helps patients feel better and that improved fitness contributes to less fatigue and a sense of greater well-being.

“Exercise is a natural pain reliever,” Gulch said.

Title: Re: Fibro Stories
Post by: sunnipearl on September 11, 2007, 12:49:23 pm
:whimper: Well,
                                I will never forget the day I went  to the doctors about how I was feeling..This started back in 98 or possibly way before that...
At first my elbow hurt and I mean burn hurt, And I at that time could not even hold a glass...
I let  this go on it seems for ever...Till I started to have aches and pains all over my body,Fearing to tell the doctor B/C I didn't want him to think **IT WAS ALL IN MY HEAD!** So I went about my elbow, And he said maybe tendinitis? I said how can I have that, when I don't even play tennis? LOL.....It was all red and swollen and stiff......anyway he sent me home with some ibuprofen and said take these it will get better...Well it never did get better,some weeks went by and it started to affect my face,Teeth,Mouth,I could hardly talk.....Next my hips hurt so bad I couldn't walk .I was left in bed for weeks on end in so much pain I thought I was dyeing....
It went to my neck area and so forth, All the spots you see....I had to see the doctor and this time I started to cry B/C I had no clue  what was going on? I told him,That everything in my body hurt so bad, that I couldn't even hold a glass or vacuum or anything I was really sick...He looks at me and says I think you have fibromyaliga? I said fibro wha? I had never heard of it before in my life......He said all I can tell you is get a book and read..So I did, I bought every book I could find on this subject..I read and read...Next, Things were not getting better they were getting worse like bladder infections and upper problems, I am in the hospital and all swelled ,The doctors at that time said loss some weight and you will be fine...Can you believe that? I was not fat I was swollen..My mom had it out with them.....Next, I went back to the doctors and he ran a lot of tests come to find out not only did I have fibro,I also had Lupus....Mind you this was like 5 years or so of feeling like this and not knowing what was wrong....I really started to get depressed..They gave me anti depressants pills...one after another,none of which worked and made me worse until I could no longer stand it.....I was using a cane by then, And never feeling good.Oh how this put such a strain on my family...I am surprised they didn't all jump in the car and leave me here all alone..I was really sick...Now with new med's and all I am ok..I say OK,  Because I am just that.....The doctor since then is no longer my doctor B/C he was not there for me as you all know about that kind of stuff, No bed side manner......So now I know my body and what I can take and so forth,and iI still do a lot of resting.....thats my little story thanks for reading.Love Gail

Title: Jennifer Jowett age 17 yrs.
Post by: Adminஐﻬ on November 06, 2007, 11:19:03 pm

Jennifer Jowett had three years of her life stolen from her because of chronic pain but is now living life as an outpatient in Bloorview Kid's Rehab pain program.

"I have pain all the time and it will never go away, but I'm able to do more now because of the pain program," Jennifer, 17, who has a musculoskeletal condition, said yesterday on the kickoff to National Pain Awareness Week.

Three years ago, Jennifer was struck with an illness and the pain disabled her entire body. The days of playing hockey, being in a marching band and receiving academic awards came to an end.

Jennifer saw a string of doctors and went through a battery of tests, but no medication took the pain away.

Like many children with chronic pain, Jennifer struggled to get a diagnosis and her symptoms were minimized or dismissed as behavioural or psychological.

One doctor told Jennifer's mother, Janice, "I wish there was something I could do to help but I can't, so goodbye."

"Sitting at home was not the life I wanted for my daughter," Jowett said.

A year and a half ago, Jennifer was diagnosed as having fibromyalgia, which has many symptoms. She just completed a six-week stay at Bloorview's one-of-a-kind inpatient pediatric pain program.

Her time at Bloorview included regular wake-up and bedtime hours, exercise on a bike and with a jump rope, occupational and physical therapy, counselling and rest breaks worked into her time at the hospital's school.

Last week, for the first time in three years, Jennifer attended her Huntsville high school.


- 17% to 31% of the general community report chronic pain. - 50% of hospitalized patients report acute pain of moderate to severe intensity. - People in pain miss work, spend time in hospital and visit the doctor often. - Pain is almost never mentioned in medical training. - In-hospital patients with pain from non-surgical conditions are less likely to have their pain taken seriously enough to be treated. - Outpatients who report pain of chronic duration to health-care professionals are often dismissed, or are accused of fabricating symptoms.

Source: Canadian Pain Coalition

Title: Re: Fibro Stories
Post by: sunnipearl on November 07, 2007, 12:10:29 pm
gdpst I know this to be true.....I am a Lupus surviver..also a fibromyalgia surviver...I hate this disease ,But it has made me stronger as a person, And more sensitive to others with chronic pain and sickness's... hrt I am so sorry for anyone that has to endever any kind of pain B/C it's not fun at all..So to any of you with any of these conditions, I am praying for you,God Bless all of you,Love Gail :rose:

Title: Fibromyalgia not just in your head
Post by: Adminஐﻬ on November 23, 2007, 11:45:34 am
Fibromyalgia not just in your head

One doctor told her she was overly sensitive to the workings of her body, another said that, as an oncology nurse, she was associating with her patients through her symptoms.

The subtext was clear. "It was kind of a way of saying, 'It's all in your head.' In other words, I was a hypochondriac," said Betty Razvillas. "I don't look like I'm sick, so I've had co-workers who didn't believe there was anything wrong with me — that I was a malingerer."

Faced with disbelief, frustrated and dispirited, Razvillas tried for years to find a name for what was causing the pain she felt all over her body and the sleep problems that left her feeling exhausted from the moment she got out of bed.

It wasn't until 1990 that a doctor diagnosed something called fibromyalgia.

A year-and-a-half ago, the debilitating pain, headaches and fatigue had reached a critical point, and she also was suffering from irritable-bowel syndrome, which often is associated with fibromyalgia.

"I started feeling in early 2006 that I wasn't going to be able to work anymore. I was feeling so disabled I was going to have to quit working. I had used all my sick time, all my vacation time, my personal leave. I didn't have any means to manage it anymore. I was in a desperate state," recalled Razvillas, 60.

It was then that she got in to see physician I. Jon Russell, a noted researcher in fibromyalgia. He put her on Lyrica, a drug then in trials and just approved this summer by the Food and Drug Administration as the first drug for the treatment of fibromyalgia.

For the first time, Razvillas felt some relief from the constant pain, and she was able to sleep better.

Turns out, "It is in your head — and your spinal fluid. Fibromyalgia is a neurologic disorder," said Russell.

The National Fibromyalgia Association estimates about 10 million Americans have fibromyalgia, defined as a chronic condition of pain in muscles, ligaments and tendons also marked by fatigue and disturbed, non-restorative sleep.

In many ways, Russell's 30-year career follows the evolution of thinking and understanding about fibromyalgia. When he was in training at the Mayo Clinic, the implication was that patients' symptoms of chronic, widespread pain were a response to stress and were psychological.

"It implied to patients that it was their fault."

Over the years, Russell, who in addition to a medical degree has a doctorate in biochemistry, has studied the neurological mechanism and epidemiology of the disorder, conducted drug clinical trials and consulted with pharmaceutical companies on drug development.

He noted that Lyrica works by reducing abnormally high levels of Substance P in the spinal fluid of people with fibromyalgia.

All this is relatively new. Until 1990, there were no diagnostic criteria for fibromyalgia and few clinicians focused on it. The American College of Rheumatology published criteria that year, and other medical groups eventually recognized the disorder.

Far from being vague and tough to diagnose, Russell said he finds it easy to identify fibromyalgia. First, the patient must have had pain all over the body for at least three months. Second, a minimum of 11 of 18 tender points around the body must be painful under relatively mild pressure.

Russell, who with registered nurse Jenny Fransen wrote "The Fibromyalgia Help Book: Practical Guide to Living Better with Fibromyalgia," is sometimes asked to sign off that a patient is disabled and unable to work.

But, "I tell patients let's do everything we can to help you rejoin life rather than accept this defeat your body is trying to pull on you."

Psychiatrist Lesley M. Arnold of the University of Cincinnati College of Medicine, said: "There are still physicians out there who are skeptical about fibromyalgia. Lyrica lends legitimacy in the minds of doctors because the FDA recognizes it as a condition. It's a positive for patients. They'll have more options."

"Lyrica has changed my life," Razvillas said. "I started having a positive outlook and feel better mentally. I rest better. I have more energy, a better mood. I've been able to go back to church, a simple thing like that."

Ambien aids her sleep, and she finds massages and heat pads helpful for pain.

Diet is key in alleviating irritable-bowel symptoms. On days when she isn't well enough to go to the health science center, Razvillas works at home.

"Being an oncology nurse has been my salvation because I can look at my patients and say, that could be me. They come to the doctor with their courage and their smiles and hope, and if I can give them additional hope ... I feel blessed," she says with tears in her eyes.

Coincidentally, Razvillas' husband, Richard, has fibromyalgia as well, suffering more with migraines.

"We support each other," she said. "We get up in the morning and laugh about what is the pain du jour, and it's a contest of who hurts the most. We're a funny pair."

It's the second marriage for both, and together they have five children and 12 grandchildren.

Treatment has made a big difference for Razvillas. But truth be told, it is still a rare day when she feels no pain at all. "As we speak," she said late in the interview, "my knee is throbbing."

*This story is all too familiar with many of us

Title: Re: Fibro Stories
Post by: Adminஐﻬ on December 10, 2007, 10:03:00 pm
Does culture play a role in chronic illnesses such as fibromyalgia? One woman shares her viewpoint and her journey from debilitating illness to triathlons. Plus, an in-depth look at the disease, the symptoms and the latest treatments.

Minnie Lee, 35, has her theory on why she was afflicted with fibromyalgia (FM) in her twenties. She was a “total Type A, uber-model Asian student”: a finance degree from Rutgers, three years as an investment banker in Korea and Hong Kong, an MBA from UCLA and now a career with Fox Television. She recalls her days as an investment banker as being incredibly demanding and stressful. But even worse was her relationship with her mother who wanted Lee to move back to Korea, get married and start a family. Eventually, Lee says, the pressures started manifesting physically.

In 1997, Lee suffered a total system breakdown—she couldn’t digest food for months—accompanied by an outbreak of psoriasis. Next came severe flu-like symptoms and muscle aching that wouldn’t let up. She carried Theraflu with her wherever she went. After two frustrating years of medical examinations only to find nothing suspect in blood tests, X-rays and EKGs, she finally was diagnosed with FM. Like most people, she had never heard of it. Later she would choose a highly unorthodox plan, racing in triathlons, to get better.

Patrick B. Wood, M.D., senior medical advisor for the National Fibromyalgia Association, says FM is “based on the presence of chronic widespread pain of at least three months duration, on the left and right side of the body, above and below waistline, so it’s in all four quadrants. It also depends on the presence of these things called tender points—specific places on the body that have been mapped out—that when you apply a light pressure to them the person declares them to be painful.” If a person feels pain in at least 11 out of 18 predetermined tender points (near the neck, shoulders, elbows, lower back, pelvic girdle and knees), in addition to the aforementioned widespread pain, then they can be diagnosed with FM.

The average person would welcome a neck and shoulder massage, but for a FM patient, a sudden touch could recoil them into pain. “On a good day, the pain is there but it doesn’t hurt; it doesn’t kill me,” says Lee, “but on a bad day, there’s a fork in there [pointing to her neck] and someone is squeezing it and twisting it all day long. I feel dizzy and woozy like I can’t really see straight. It’s hard to deal with sound sometimes, too.” She also describes a flare-up of pain that feels like a house sitting on her shoulders. There are days when she can’t walk down stairs.

The illness is relatively new to the medical scene, having been given diagnostic criteria by the American College of Rheumatology in 1990. Before then, FM was not widely accepted by the medical community because there weren’t (and still aren’t) any standard laboratory tests to confirm the condition. It was thought of as a phantom disease or all in the patient’s head. Overwhelming recent research, however, does prove physiological abnormalities and neurological changes in FM patients, though the exact origin of the disease is still unknown. In June 2007, the Food and Drug Administration approved the first medication for FM – Lyrica ® (generic name: pregabalin), an anticonvulsant used to treat neurological illnesses.

Besides the widespread muscle pain, other symptoms include extreme fatigue, sleeping problems, headaches and migraines, jaw pain, irritable bowel syndrome, noise and temperature sensitivity, cognitive dysfunction (also known as “fibro fog”), restless leg syndrome and anxiety and depression. Common Western treatments include painkillers, muscle relaxants, antidepressants and now Lyrica ®.

After her diagnosis, Lee was at first relieved but then grew pessimistic. She remained bedridden for days, missed work with great frequency and when she could get out of bed, often went out drinking with friends to feel better. “It was a vicious cycle,” she says. “I really didn’t have a reason to get up in the morning.” She tried prescription medicines but none worked for her.

The turning point came when she realized how unhappy and unhealthy she had become. She knew she would have to mentally reprogram herself to get better. After much self-reflection, she remembered the high she felt after completing her first triathlon. This unorthodox route would become her passion, her way toward overcoming FM.

Minnie Lee“Every time I race I laugh because I’m really slow. I can’t really go crazy because I don’t want to get sick the next day. I’m going total turtle pace. All my friends can’t believe it, but they have no idea how slow I am going. I am the classic example of if I can do it, anybody can do it, and you can do it better!” She has completed six triathlons over the past two years and does a mix between Olympic-distance (0.9 mile swim, 26 mile bike, 6.2 mile run) and sprint-distance triathlons (0.5 mile swim, 13 mile bike, 3 mile run), usually finishing one-and-a-half hours behind her peers. Her blog, www.tribeyondlimits.com, shares her experiences with FM and triathlons.

Most FM patients would not go into a discipline that could stress out their muscles even more, but Lee feels the opposite. “You get sick anyways, so you might as well have fun and then get sick.”

FM affects 6 million people in the United States and occurs more in women than men. It strikes all races and ethnicities, though Lee thinks Asians are probably under-diagnosed because of their unwillingness to admit weakness. Growing up, Lee remembers her mother often complaining of physical pain but doing nothing about it. Research now points to a possible genetic component to FM.

Wood describes other precipitators such as environmental exposure, chronic stress, whiplash suffered after a car accident or a bad bout of the flu that a patient never seems to recover from. “We have started to realize that there is more than one way to develop FM and there may be more than one type of FM.”

Treatments vary for each person, and many patients have coexisting conditions such as lupus, rheumatoid arthritis, HIV and sickle cell anemia. Lee now receives acupuncture once a week and takes supplements. Other complementary medicine and alternative medicine treatments include therapeutic massage, yoga, tai chi, herbal medicines, chiropractic manipulation, craniosacral therapy and biofeedback.

Malcolm Taw, M.D., is an assistant clinical professor at the UCLA Center for East-West Medicine, a clinic that blends the best of Western and traditional Chinese medicine. He says the center is often the “clinic of last resort” after patients have tried everything and gone through the whole UCLA medical network. Acupuncture is one of their main treatments for FM. “Maybe the biggest question with acupuncture is where is the medication? How do you gain a therapeutic effect? We believe all the medications, the neurotransmitters, the hormones, are already in the body, and acupuncture is simply a means of rebalancing and re-regulating those physiological cascades.”

There are many different schools of thought about both the treatments for and the origins of FM. “Some people argue that the body is more sensitive in the tissue and some people believe it is in the spinal cord where all the changes take place,” says Wood. “I am in the school of thought that says the changes take place on the brain level.” Since FM does not cause inflammation of tissues, pain comes from how the brain chemically perceives it, he theorizes. 

And what about Lee’s theory that her Asian background and Type A personality are to blame for her battle with FM? Taw says there is no current research indicating a specific connection to the Asian culture, but he does say that culture and family could play a role if such associations lead to stress, a FM risk factor. Taw also notes that he sees a lot of Type A personalities with the illness. “I think there is a certain personality type that comes with FM like a Type A personality. I see a lot of people who are always on the go, who tend to get stressed a lot.”

Whatever the origin, Lee is determined to live well with FM. She credits the illness with giving her a purpose in life. As part of her recovery, Lee has become a volunteer with the National Fibromyalgia Association and was invited to attend their 3rd Annual Leaders Against Pain Seminar in Washington, D.C., in August 2007. She received leadership and media training, and she was the group’s first and only Asian American attendee. Lee hopes to use her new skill set, coupled with her triathlon events, to continue to raise awareness about FM, especially in Asian American communities.

“Something that could have harmed me, has been beneficial for me,” Lee contemplates. It’s my drive to be a better person; it’s my drive to be healthier and to reach out to other people.”

Learn More

National Fibromyalgia Association - www.fmaware.org

Minnie Lee’s blog - www.TriBeyondLimits.com

American College of Rheumatology - www.rheumatology.org

Dr. Patrick B. Wood’s Web site (documentary on FM) - www.lifebeyondpain.com

UCLA Center for East-West Medicine - www.cewm.med.ucla.edu

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