Cynthia's blog was mentioned in an article at http://www.cfids.org/cfidslink/2007/blogosphere.pdf
That article mentions a number of other CFS blogs -- if you don't believe what you read here, perhaps you'll believe it when you see the same information in other blogs. I don't lie; the lies are told by the doctors who claim that CFS is imaginary and not disabling.
A new group member had an appointment with a new neurologist and commented on < the doc's relatively casual statement that all - yes ALL - CFS patient reveal the same type of frontal lobe damage on PET imaging, varying only by degree of severity. According to this neurodoc, those with less damage nonetheless have considerable abnormalities. He added that CFS patients' brains "light up" exactly as ADD patients' brains do in the frontal lobes. Nobody questions the validity of ADD; in fact, it seems doctors are almost falling over themselves to diagnose ADD. >
This is the question that has been nagging CFS patients for decades. The virtually identical symptoms in MS are readily accepted as real, but when presented as part of CFS, are derided as "all in your head". In the early days, some doctors were misdiagnosing it as "atypical MS", which makes me wonder why some of my doctors didn't make the MS connection when assessing my symptoms, instead of jumping directly to depression/anxiety. Those who know me well tell me that I come across as confident and self-assured, which is a good sign that I'm not depressed and anxious; apparently, the mere fact that I'm female was enough to prompt a psychological diagnosis from misogynistic doctors regardless of what physical problem my symptoms resemble.
Just why is it that the inability to concentrate in ADD is believable and but when it's part of CFS it is not? Is it because ADD occurs more frequently in male children and CFS occurs most often in adult females? Which puts it back to the same misogynism described by Dr. Carol Jessop in the 1980s, when her severely ill female patients were returned to her with erroneous psych diagnoses, but a less affected male patient was awarded a diagnosis of "obviously a virus, but one we don't have a test for."
Haven't women made any progress in the past 20 years? Do we still get no respect from male doctors just because we're women? All the strides we've made in business and politics, even women astronauts, mean nothing if we're still being treated as lesser beings when we go to the doctor.
One of our male CFS activists has as his particular pet peeve that NIH files CFS under "Women's Health" despite the fact that 30% of patients are male. Obviously, it's filed there so they can pretend it's just something related to hormones and menopause, the same attitude many female patients get from their male doctors. It belongs under neurology.
This information that it looks the same as ADD on brain scans proves that it belongs under neurology and is not something related to gender or false assumptions that women will make any excuse to avoid having to work.
How much objective medical information will it take before the medical community accepts that CFS is real, it is organic, it is neurological?
One problem with medical care today noted by CFS/fibro experts is that the lab test has become all-important. Whereas diagnostics in the old days required listening carefully to the patient and sifting through the possibilities, nowadays it’s become strictly a matter of test results. If the tests are normal, the doctor tells the patient that she is imagining things because the tests are always right.
However, Devin Starlanyl, M.D., doctor and patient, observes "Just because standard testing shows normal values does not always mean everything is fine. It may simply mean that the proper tests have not been run."
How unfortunate that patients are now routinely disbelieved by their doctors!
When the AIDS epidemic began, patients who complained of not feeling well were told that there was nothing wrong, because there wasn’t yet a test for that virus. "All tests were normal". We know now that there is something very wrong with AIDS patients, and there is now a test to prove it.
The same happens to CFS patients. There are many tests that would show their immune system is malfunctioning, and scans that show lesions, but the blood tests that were done on me – both in 1987 and in 2000 – were reported as "all normal" and it was considered unnecessary to do more tests. The heck with what the patient said, the tests said there was nothing wrong. All the doctor had to do was trust his eyes (friends told me I didn’t look well) and ears (I told him exactly what was wrong with me, including my prior diagnosis). But he chose to trust the tests instead and call me a liar when those tests didn’t show abnormalities that they don’t test for.
But, when a new test was done, one that is not commonly part of the basic first-round blood tests, the results were described to me as "off the charts". With the addition of one new test, I went from having no proof that anything was wrong to something seriously wrong. No one had stopped to think that the basic first-found blood tests check for specific things: they proved that I did not have diabetes, that I did not have an autoimmune disease like lupus, that I did not have thyroid problems, that I did not have Lyme disease. But they couldn’t tell the doctor whether I was telling the truth about insomnia, or severe pain, or fainting.
Similarly, for years, CFS patients were told there was nothing wrong with their hearts. Until someone had the bright idea of changing the test. Dr. Paul Cheney comments "Unlike all other measures of cardiac output, this is the only one that can be done in the upright position. Which, as you'll find out in a second, was a critical step. Absolutely critical. All other cardiac output measurements are done in the supine position – laying down." And when a cardiac tests was finally done in the upright position, it documented what patients had been saying all along: "what they found is absolutely astonishing, truly astonishing. When [disabled CFIDS patients] stand up, [they're] on the edge of organ failure due to low cardiac output." "More importantly, all disabled CFIDS patients, all of whom have post_exertional fatigue, have low "Q" and are in heart failure."
The patients hadn’t been lying – the doctors simply weren’t considering that the test had to take into account what the patients were complaining about: difficulty being upright. You feel better when you’re lying down for a reason: when you’re lying down, your cardiac output is within normal limits.
I saw a cardiologist who clearly hadn’t read the CFS material I had sent to him before the test. My physiological response to the test puzzled him. When I got home and mentioned what happened to someone who knows about CFS, I was told that weird reaction is exactly what should happen to a CFS patient. As Dr. Cheney explains "There are two kinds of heart failure. There's the kind that any cardiologist can diagnose in about a minute. That you do NOT have. Which is why cardiologists missed this. What you have is Compensated Idiopathic Cardiomyopathy. ... The disease [CFS] itself is protecting you from a deeper problem that has been totally missed." Succinctly, the CFS serves as a governor so that your heart cannot go into overdrive, which might kill you.
It’s often said that God works in mysterious ways, and that little glitch is one of them. It makes perfect sense ... once someone opened their mind to the possibility that patient reports might be more accurate than conventional testing.
Someone finally had the idea of performing a functional MRI on fibro patients. Instead of them lying stock-still in a tube, this tests what happens when they are moving. The results proved unequivocally that their brains react differently than the brains of healthy people. Again, precisely what the patients had been saying, but which too many doctors had been writing off as exaggeration and excuses because blood tests were normal. But this is something that cannot be measured by the standard blood tests. It’s not caused by diabetes or thyroid or anemia. It is possible to test for Substance P levels, but it’s not a test that’s commonly ordered.
Dr. David Bell, another of the early experts on CFS, observes "Modern medicine prides itself on scientific accuracy. The days of clinical medicine, listening to and trusting patients ... have been replaced with sophisticated machines and tests that do not lie. The art of medicine gave birth to an unruly child, medical technology. ... [The modern doctor] listens to the patient only long enough to decide which tests will give the scientific answer. ... Physicians must discipline the unruly child, medical technology, and not abandon the art of medicine."
And it is important for doctors to recognize that a series of negative tests may mean only that they need to order different tests. Those patients who have doctors willing to continue searching until they find something wrong are at a great advantage over those whose doctors, whether through ignorance or parsimoniousness, stop after the first round of tests. (Some HMOs offer bonuses for keeping costs down, which may lead doctors to refuse to do expensive testing, like sleep studies or MRIs, which might document an actual problem, but cost the doctor his cost-cutting bonus in the process.) Others may have the erroneous impression that the standard tests would discover absolutely anything that is wrong. (The guy who graduated last in his medical school class is, nonetheless, someone’s doctor!)
And, unfortunately, the truth about CFS and fibro is not well-known in the medical community. Too many doctors consider them a "wastebasket diagnosis" when you don’t know what else to call it, with no idea how they’re correctly diagnosed, and too few doctors know what to do about them. Although these doctors don’t want to admit their incompetence, Dr. Bell writes "the uniqueness of the pattern of symptoms in CFS, and their persistence over long periods of time, make this an illness that can be diagnosed clinically, not just resorted to when everything else has been excluded." And he’s right – support groups made up primarily of laypeople can diagnose CFS (or rule it out) with near 100% accuracy. If doctors can’t do the same, it’s only because they’re not interested in learning the symptom pattern. "Historically, the pattern of symptoms has made the diagnosis of an illness", Dr. Bell writes, and so it is with CFS. Someone who knows the pattern will recognize it immediately. Someone who doesn’t know the pattern will continue to disparage it as random symptoms.
At present, the capital of California doesn’t have a single CFS specialist, and none that we know of within at least 2 hours drive. Sometime next year, there will be a CFS Center for Excellence opening in Reno (2 hours away), and we will probably all commute up there for our treatment, but for now, we’re making do with doctors who don’t know much, and, in the words of one of my former doctors, are "not interested in learning". Some of whom don’t even know that anti-depressants are useless and exercise is detrimental. Some of whom have never even heard of Paul Cheney, who was one of the first doctors to identify and research CFS.
Dr. Bell is familiar with that attitude, as well. "By making the diagnosis of depression ... the primary care physician could write a diagnosis into the chart, one that theoretically answered the questions and relieved the doctor from further responsibilities." But the problem arises that repeated research has proven that anti-depressants are useless against CFS, so at some point, the doctor has to face the fact that treating the patient for depression isn’t helping. Unfortunately, the predominant response to that is the accusation that this is a "non-compliant" patient who "doesn’t want to go back to work", rather than an admission that the doctor doesn’t know what has been shown to work on CFS and the doctor is just faking it to avoid admitting ignorance. In fact, the Cecil Textbook of Medicine makes it clear that if "the condition does not respond to psychiatric treatment", then it is an organic disorder.
Nearly a decade before my current relapse, Dr. Bell wrote "That fatigue can be caused by disease in the brain has been known for years. It is an extremely complex area of neurology." Yet, here we are almost two decades after he wrote that, and there are still innumerable doctors who are completely unaware of the CFS/neurology connection. They don’t order the neurological tests that would show a problem, and, of course, blood tests don’t show problems with the central nervous system, so they continue under the misconception that "all tests are normal" without ever considering what tests were not ordered, which might not have been normal if they had been done.
Let's go back to practicing medicine the old way, where the doctor listened to the patient, believed the patient, and diagnosed based on symptoms, and not on whether the wrong tests "are normal". There is a place for tests in CFS diagnosis: as a starting point to rule out other fatiguing conditions. But the real diagnosis should be made on the symptoms described in the literature: that combination of exercise intolerance, memory loss, swollen glands, fever, cognitive impairment, pain, and neurological abnormalities. It's not a wastebasket at all – it’s a well-defined condition that's easy to diagnose if you know what you're looking for.
Angela Kennedy, mother of a CFS patient, and founder of The One Click Group, responded at length to the article on disrespectful medical treatment. I'll share a few paragraphs of her commentary:
I do feel that even these strategies may not
prevent the terrible problems people with this group of illnesses
experience with their doctors, because of social structures and
distal power relations around medical arrangements in Western
societies, beyond the patient's control.
More importantly, I think articles like this do have the potential
unfortunate effect of putting the onus on the patient to change
behaviour- so that when the patient-doctor encounter is STILL
problematic, the implication is that the patient has not done things
right.
I say this from experience (last week actually! and it's not the
first time). And I'm not even an ME/CFS/FMS sufferer. <major snip>
I'm not saying don't bother employing certain strategies- I'm just
saying one may still come a cropper, and it is unlikely to be within
your control. If this happens, while learning from the experience,
one should NEVER blame oneself, as this is counter-productive, and
likely to be an inaccurate judgement of the situation.
I frequently see on these boards similar experiences, where
doctors or others are using behaviour designed to intimidate or
manipulate patients into not asserting their needs.
Research is being done on the power relations within medical
settings, how these are abused by doctors and others etc. I am not
trying to be anti-doctor, but a lot of abuse of patients is
institutionalised, and doctors should be accountable for their
behaviour, which in actuality rarely occurs. This is a difficult
area, because of the status and privilege acquired by one group (the
medics) and the lack of same of another (patients- especially with
difficult to diagnose chronic illness).
Like Angela, I've heard plenty of stories of dismissive doctors from CFS patients and have some of my own.
Although I've been told by some doctors that I give a darn good medical history, I was told by another doctor "nothing you said made sense". The information I was giving him didn't fit with what he wanted to hear, therefore, he had to "put the onus on the patient" -- the problem wasn't that he'd made a wrong diagnosis, the problem was with me not saying the right things to fit with the diagnosis he wanted to make. As Dr. Groopman's book describes, he ignored any information that contradicted his initial diagnosis. And put the blame on me when the wrong pills that he prescribed for the wrong diagnosis didn't cure me, which was, actually, proof that the diagnosis was wrong.
Angela makes a good point, that blaming yourself doesn't fix the problem, which is actually between the doctor's ears.
Since doctors don't seem inclined to make their colleagues accountable, patients must. If a doctor treats you disrespectfully, leave his practice and make sure he knows why you are leaving. Then make sure other people know why, too. Track down websites like RateMD.com and go public with your complaints.
The state medical board took the position that since my doctors hadn't killed me, hadn't amputated the wrong limb, "no harm, no foul". (Never mind that I've been told I'll never work full-time again as a result of the malpractice.) As a result, the medical board's records reflect "no complaints", so there is nothing there to warn anyone away from a doctor that a friend and I both had the same attitude problem with. But websites like RateMD aren't run by doctors, so they're not going to cover up the truth that some doctors should be avoided.
If you're willing to take the chance, sue the doctors. If nothing else, it'll get your name into the public record as someone who had problems with that doctor as a warning to other patients. The next time my former doctor is sued, I expect to be contacted to testify that falsifying medical records is his "pattern and practice", which will make the penalties that much harsher because he's done it before, been sued over it before, and didn't take corrective action.
Disrespectful Medical Treatment and Tips For Working With Your Physician
by Jenny Fransen, RN
http://www.immunesupport.com/library/showarticle.cfm/ID/7878
(excerpts)
Unfortunately, during this pre-diagnosis period, many people have met with countless healthcare professionals who were insensitive, disrespectful, uneducated, and who blamed the patient for their pain. They were told they were crazy, “It’s all in your head,” and other damaging comments.
Guilt and shame are also painful emotions felt by many people with Fibromyalgia as a response to disrespect and blame by medical professionals. They are the feelings “I must be bad because I have this,” or “I must somehow be at fault for having this.”
If you have had this experience, it is important for you to know you are not to blame for your symptoms. You are not crazy. You have a real medical condition, and you deserve respectful medical treatment. The damaging comments that were directed toward you were completely inappropriate. You have a right to be angry about this mistreatment.
How can you express your anger toward those who have hurt you? You could write them a letter and express how their treatment hurt you, how you now have received a correct diagnosis, and what they could have done which would have been more helpful.
Lastly, you must not remain under disrespectful medical care. It will only continue to harm your sense of well-being, fuel depression and anger, and continue the cycle of distrust toward medical professionals. You deserve respectful care, and you must have it.
* * * *
I made sure that my doctors were made aware that their incompetence had permanently affected my health. Proper treatment -- addressing the pain and/or resulting insomnia -- almost certainly would have gotten me back to work within a few months. That treatment was repeatedly refused by doctors who believed "it's all in your head" and prescribed useless anti-depressants instead, and it is now the specialist's opinion that I will never work full-time again because I didn't get proper treatment early on.
And I have made sure that other patients are aware that believing that if you persist, eventually your doctor will listen to you and give you the right prescription, can be detrimental to your health. The doctor who refuses to believe you now will stubbornly refuse to believe you no matter how many times you repeat yourself. You will never "prove" to him that he is wrong.
Much better to do what I did not -- give him ONE second chance and then look for a new doctor who takes a different approach. By the time I finally realized that that doctor was never going to give me the pills I asked for, that he didn't know the first thing about CFS (not even how to diagnose it), it was too late, and I have to live with the consequences.
He was unable to admit to himself, or to me, "you would be better off with another doctor". His erroneous belief that I was just imagining things because I didn't want to work cost me all chance at State Disability benefits, and impacted my SSDI application as well. No matter how many other doctors, who know CFS/fibro is real and incurable, say that I cannot work, the judge keeps going back to the first doctor's false statement to support denying my benefits.
Don't let that happen to you!
Co-Cure.org has a list of "good doctors" for CFS/fibro. RateMD.com lets you warn others off bad doctors (or praise a good one).
I may not be able to get myself back to good health, but I can make sure that the same doctors don't do the same thing to other patients. Maybe the doctors will read the studies I cited showing that exercise and anti-depressants don't work for CFS; I wouldn't bet on it. But I can steer other patients away from them.
http://www.theledger.com/apps/pbcs.dll/article?AID=/20070401/NEWS/704010412&SearchID=73276846005614
'Gray Area' Diseases Prove Difficult to Treat, Understand
Fibromyalgia, chronic fatigue syndrome debilitate victims amid controversy,
dispute in the medical community over unclear causes.
By Gary White
The Ledger, Lakeland, Florida
'YOU DON'T LOOK SICK'
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. (SCOTT WHEELER/The Ledger (2006))
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 asheet 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 definitelydepend 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."
http://www.theledger.com/apps/pbcs.dll/article?AID=/20070401/NEWS/704010426/1004/NEWS08
Doctors Differ in Approaches Used In Treating Malady
By Gary White
The Ledger
ABOUT THIS SERIES
Fibromyalgia, chronic fatigue syndrome are hard to treat and difficult to
understand.
Monday: Mystery ailments derail lives and expose sufferers to hostility
from loved ones and doctors.
The treatment for fibromyalgia varies according to the doctor administering
it. Patients often wind up seeing a rheumatologist or a pain-management
specialist, and the most common medical approach involves reducing the
symptoms - widespread muscle or joint pain, weakness, burning sensations,
extreme skin sensitivity and fevers - and increasing the patient's capacity
for activity.
Dr. Edward Lubin, a pain-management specialist at Winter Haven's Gessler
Clinic, said the most important element of his treatment comes at the
beginning. Many patients arrive hoping for a sudden and permanent fix, and
Lubin stresses the need to regard fibromyalgia as a chronic disorder, like
diabetes or hypertension, lifelong ailments with symptoms that can be
managed through consistent treatment.
"The first thing they need to understand is the adage, 'Chronic pain is
chronic,'" Lubin said. "There are patients who will never be able to wrap
their arms around the chronicity or durability of their pain and how much
we understand it to be chronic. That makes for at times a very difficult
practice."
Lubin, who trained at Yale and Harvard, uses various methods to combat the
symptoms of fibromyalgia and similar maladies, including nerve blocks,
nerve excision, steroid injections, radiofrequency ablation and various
kinds of injections into trigger points, as well as pain medications
ranging from anti-inflammatories to morphine.
He also sometimes prescribes antidepressants or refers patients for
psychiatric counseling. The Food and Drug Administration has not approved
any medications specifically for fibromyalgia, meaning any drugs are
prescribed "off-label."
Dr. Roland Staud, a professor at the University of Florida's school of
medicine, said several drugs are nearing submission to the FDA for the
treatment of fibromyalgia. Staud is also involved in studies of cognitive
behavioral therapy, which he considers an essential element in treating
chronic pain. There is continuing scientific debate over the pain centers
stimulated by fibromyalgia, and Staud focuses his research on the spinal
cord as the source of pain transmission.
"When it is difficult on the physical level to reduce pain generation, then
we need to also affect the central mechanism, which is, for example,
negative mood, anxiety, fear, anger - all these things come into play in
chronic syndromes like fibromyalgia," Staud said. "This acknowledges the
mind-body connection that everybody has. It doesn't just marginalize this
as purely a psychological syndrome."
Dr. Patrick Wood, an assistant professor of medicine at Louisiana State
University, has also devoted his career to studying chronic pain disorders.
In Wood's view, fibromyalgia results from the failure of patients' brains
to make and use dopamine, a chemical involved in transmitting signals
between cells.
Wood said experiments with drugs that mimic the effects of dopamine have
shown promise, and he stressed the difference between this approach -
targeting the source of pain - and the prevalent strategy of managing the
symptoms.
"Our treatment of the symptoms has been sort of a shot in the dark because
we don't really understand what it is we are treating," Wood wrote in the
January issue of The Journal of Pain.
One Lakeland doctor takes an entirely different approach. Dr. David
Reifsnyder, an infectious disease specialist, suggests many patients
diagnosed with fibromyalgia and similar maladies actually have an
undiagnosed viral or bacterial illness, such as chronic mononucleosis,
chronic mycoplasma, Lyme disease or even cat scratch disease. He said in
other cases he finds a simple cause of the symptoms - for example, a bad
reaction to a medication.
"In my own personal experience, (in) about 95 percent of the people I see
with either chronic fatigue syndrome or fibromyalgia, the cause is found,
and the vast majority of those respond to treatment and recover
completely," Reifsnyder said.
He said many of his patients are referred by other local doctors, who are
happy to pass along patients with seemingly intractable ailments.
Reifsnyder has long-term patients who now live as far away as California
but still come to Florida to see him.
Reifsnyder, who operates a solo practice, devotes a full hour to a
patient's first visit to take a thorough medical history, looking for clues
to any undiagnosed chronic illnesses.
"Often patients come out of his office crying with relief," said
Reifsnyder's wife, Nellda, who works in his office. "One patient said,
'This is the 44th doctor I've seen.' They're very angry. They say no one
has listened to them."
This is actually a very common complaint among CFS/fibro patients -- as Dr. Groopman's book says, doctors leap to conclusions in the first few seconds of an appointment and thereafter don't feel they need to listen to the patient. Even when I was struggling to continue working, I was being tagged as a malingerer by doctors who didn't listen to the fact that I was continuing to work as much as I could, but couldn't manage a full-time schedule.
FIBROMYALGIA
What is it?: A chronic pain illness marked by widespread pain, stiffness
and tenderness in muscles; general fatigue; sleep problems; burning
sensations; extreme skin sensitivity; and memory problems. Symptoms often
fluctuate widely in intensity.
How is it diagnosed?: No laboratory tests confirm fibromyalgia. Diagnosis
is based on patient histories, self-reported symptoms and a physical
examination. The main diagnostic guidelines are widespread pain in all four
body quadrants for at least three months and tenderness or pain in at least
11 of 18 specific points.
Who has it?: The National Fibromyalgia Association estimates 10 million
Americans have fibromyalgia, at least 80 percent of them female.
Prognosis: Not considered life-threatening.
Treatment: Most doctors focus on symptoms, reducing pain and increasing
activity through medication and physical therapy. Other options include
sleep management, nerve blocks, psychotherapy, antidepressants and
acupuncture. An experimental treatment used at a Mulberry clinic involves
the non-prescription drug guaifenesin and the avoidance of plant-based
products.
CHRONIC FATIGUE SYNDROME
What is it?: An illness typified by profound fatigue not lessened by rest,
as well as muscle pain and memory or concentration problems.
How is it diagnosed?: The syndrome has no specific diagnostic test.
Diagnosis emerges from a patient history of severe fatigue lasting at least
six months and the presence of at least four of the following symptoms:
substantial impairment in short-term memory or concentration; sore throat;
tender lymph nodes; muscle pain; multi-joint pain without swelling or
redness; headaches of a new type, pattern or severity; unrefreshing sleep;
and post-exertional malaise lasting more than 24 hours.
Who has it?: The Centers for Disease Control estimates more than 1 million
Americans meet the definition for CFS.
Prognosis: Not considered life-threatening.
Treatment: The standard approach aims to reduce symptoms and improve
physical functions. Doctors might recommend lifestyle changes, including
avoidance of overexertion, reduced stress, dietary restrictions, gentle
stretching and nutritional supplementation, as well as medication to treat
sleep, pain and other specific symptoms.
LUPUS
What is it?: A chronic autoimmune disorder that can affect almost any part
of the body, most often the joints, skin, kidneys, heart, lungs, blood or
brain. Symptoms often mimic fibromyalgia and other illnesses.
How is it diagnosed?: No single laboratory test determines the disorder.
Diagnosis is based on a medical history finding at least four of 11
symptoms, including rashes, inflammation of the heart or lung lining,
seizures, arthritis and blood abnormalities.
Who has it?:The CDC "conservatively" estimates lupus affects 239,000
Americans, about 90 percent of them women.
Prognosis: The disorder can cause fatal complications. The CDC estimates
more than 1,000 Americans die from lupus each year.
Treatment: Varies depending on the organs affected. Anti-inflammatories,
sometimes including steroids, anti-malarial medications and drugs that
suppress the immune system are often prescribed.
GULF WAR ILLNESS
What is it?: A general label for an array of health problems experienced by
veterans of the Persian Gulf War of 1990-91. Symptoms include chronic
obstructive pulmonary disease and other lung problems, cancer, dizziness,
fatigue, reduced muscle function and skin problems.
How is it diagnosed?: The syndrome itself is not diagnosed. The Department
of Veterans Affairs medical facilities make individual determinations based
on symptoms and service.
Who has it?: About 30 percent of the 700,000 Americans who served have
registered in an illness database established by the American Legion.
Prognosis: Reports have suggested higher than normal rates of premature
death. As of 2005, figures from the Veterans Administration showed at least
11,620 of the roughly 700,000 deployed troops had died since returning.
More than 250,000 had filed for medical benefits.
