|FMS Community Newsletter #107
|FMS COMMUNITY NEWSLETTER # 107
Editor: Mary McKennell EDITOR¡¦S CORNER:
I have this t-shirt that I like to wear on my running errands day. It says on the back
¡§I have fibromyalgia. Fibromyalgia does not have me.¡¨ Invariably, I get comments
from people and it¡¦s a nice lead in to tell them about the support group that I
facilitate or tell them about this website. But I do think when I put the t-shirt on,
¡§is this really true?¡¨ Am I in ownership of the illness?
There were three articles that surfaced on more than one of my e-mail groups in the last 3
weeks that dealt with the use of fighting language when we refer to illness. Perhaps you
read an article about Edward Kennedy where people were lending morale support by telling
him to ¡§Fight, Teddy, fight.¡¨ When someone is given a diagnosis, there is always
talk about fighting to beat the disease. But what if we don¡¦t get better or the illness
does not go away? What do we do if we have this thing velcroed to us for life? What if we
gave everything to fight it and it did not make any difference? Does that make us losers?
Did we not fight with the right arsenal?
I like the concept of having been stuck with an unexpected dance partner in terms of
living with our illness, rather than a battle to constantly be fought. A book that
influenced me a good deal is called ¡§You Gotta Keep Dancing¡¨ by Tim Hansel. He wrote
his book from the perspective of one in chronic pain and talks about the need to keep
celebrating life no matter what. I recently ¡§discovered¡¨ Randy Pausch and read his
book ¡§The Last Lecture. He writes and speaks about LIVING; overcoming obstacles (he
calls them bricks walls). In his case, it¡¦s a terminal illness that he is living with.
He emphasizes seizing every moment and making the most of it. He says that time is all we
have and you may find one day that you have less than you think.
I am fond of a statement that Mark Pellegrino made in one of his books: ¡§Fibromyalgia
is not something we would ever choose to have, but if we have it, we must reach a point
where we accept the condition as part of ourselves.¡¨ I think we need to strive towards
celebrating what we can and never give up hope that there is the possibility of some part
of our life getting better. So while we have to acknowledge limitations imposed by our
illness, we need to keep dancing and look for reasons to celebrate each day that we are
Wishing you joy in the journey!
Articles in this issue:
« FDA Approves Cymbalta (Duloxetine) for Fibromyalgia
« Biological Link Between Pain And Fatigue Discovered
« Diagnosing Chronic Fatigue? Check For Sinusitis
« Bad is Good: How Bacteria And Depression Are Related
« New therapy targets problem muscles, helps patients manage chronic pain
« What Is Eczema?
« Could A Chronic Cough Be Caused By Asthma?
« Ouch! It Hurts to Wear Clothes!
« Always Late? Find Out Why
« Know Your Family AQ
« Improving Patient Doctor Communication
FDA Approves Cymbalta (Duloxetine) for Fibromyalgia
The U.S. Food and Drug Administration has approved CymbaltaR (duloxetine) as a
prescription drug for treatment of Fibromyalgia pain, according to an announcement today
by the Indianapolis-based drug maker Eli Lilly & Co. It is only the second drug
approved explicitly for treatment of Fibromyalgia. The first, the anticonvulsant and pain
drug LyricaR (pregabalin), gained FDA approval in June 2007. Both drugs come with serious
Duloxetine is a serotonin-norepinephrine reuptake inhibitor (elevator), previously
approved to manage major depressive disorder, general anxiety disorder, and diabetic
peripheral nerve pain. Serotonin and norepinephrine in the brain and spinal cord (central
nervous system) are believed to mediate core mood symptoms and help regulate the
perception of pain. Fibromyalgia is generally considered a disorder of increased CNS
sensitivity to pain characterized by chronic widespread pain and other symptoms. Lyrica is
thought to work by controlling excessive release of several neurotransmitters,
"reducing the number of 'extra' electrical signals that are sent out from overexcited
nerves in your body."
To view a series of slides on how Cymbalta is thought to work, click on this link: http://www.immunesupport.com/library/showarticle.cfm?id=8927&T=CFIDS_FM&B1=EM061808C.
Biological Link Between Pain And Fatigue Discovered
ScienceDaily (Apr. 9, 2008) ¡X A recent University of Iowa study reveals a biological
link between pain and fatigue and may help explain why more women than men are diagnosed
with chronic pain and fatigue conditions like fibromyalgia and chronic fatigue syndrome.
Working with mice, the researchers, led by Kathleen Sluka, Ph.D., professor in the
Graduate Program in Physical Therapy and Rehabilitation Science in the UI Roy J. and
Lucille A. Carver College of Medicine, found that a protein involved in muscle pain works
in conjunction with the male hormone testosterone to protect against muscle fatigue.
Chronic pain and fatigue often occur together -- as many as three in four people with
chronic, widespread musculoskeletal pain report having fatigue; and as many as 94 percent
of people with chronic fatigue syndromes report muscle pain. Women make up the majority of
patients with these conditions.
To probe the link between pain and fatigue, and the influence of sex, the UI team compared
exercise-induced muscle fatigue in male and female mice with and without ASIC3 -- an
acid-activated ion channel protein that the team has shown to be involved in
A task involving three one-hour runs produced different levels of fatigue in the different
groups of mice as measured by the temporary loss of muscle strength caused by the
Male mice with ASIC3 were less fatigued by the task than female mice. However, male mice
without the ASIC3 protein showed levels of fatigue that were similar to the female mice
and were greater than for the normal males.
In addition, when female mice with ASIC3 were given testosterone, their muscles became as
resistant to fatigue as the normal male mice. In contrast, the muscle strength of female
mice without the protein was not boosted by testosterone.
"The differences in fatigue between males and females depends on both the presence of
testosterone and the activation of ASIC3 channels, which suggests that they are
interacting somehow to protect against fatigue," Sluka said. "These differences
may help explain some of the underlying differences we see in chronic pain conditions that
include fatigue with respect to the predominance of women over men."
Diagnosing Chronic Fatigue? Check For Sinusitis
ScienceDaily (Aug. 14, 2003) ¡X Washington, D.C. ¡V A new study published in the August
11 issue of the Archives of Internal Medicine demonstrates a possible link between
unexplained chronic fatigue and sinusitis, two conditions previously not associated with
each other. Also newly noted was a relationship between sinusitis and unexplained body
pain. These findings offer new hope to patients lacking a diagnosis and treatment for
fatigue and pain.
Sinus disease is seldom considered as a cause of unexplained chronic fatigue or pain,
despite recent ear, nose, and throat (otolaryngology) studies documenting significant
fatigue and pain in patients with sinusitis and dramatic improvement after sinus surgery.
A Harvard study showed that fatigue and pain scores of sinusitis patients were similar or
worse than a group 20 years older with congestive heart failure, lung disease, or back
"Chronic fatigue is a condition that frustrates both doctors and their patients since
treatments directed at just the symptoms without knowing the cause are typically
ineffective," said Alexander C. Chester, M.D., clinical professor of medicine at
Georgetown University Medical Center and principal investigator of the pilot study.
"While sinusitis will not be the answer for everyone who comes to an internist with
unexplained fatigue or pain, this study does suggest that it should be considered as part
of a patient's medical evaluation."
Through his private internal medicine practice, Chester questioned 297 patients, noting
unexplained chronic fatigue in 22%, unexplained chronic pain in 11%, and both in 9%. While
these numbers are consistent with previous studies, Chester observed an unusual connection
between patients with chronic pain or fatigue: prevalent sinus symptoms. Sinus symptoms
were nine times more common on average in patients with unexplained chronic fatigue than
the control group, and six times more common in patients with unexplained chronic pain. In
addition, sinus symptoms were more common in patients with unexplained fatigue than in
patients with fatigue explained by a mental or physical illness, suggesting the syndrome
of unexplained fatigue is more closely associated with sinusitis than are other types of
The CDC approximates that sinusitis affects 32 million Americans. Rates are highest among
women and people living in the South. Women comprised 46% of the participants in this
study, but represented 60% of the group with fatigue, predominance also noted in most
15 out of the 65 patients in Chester's study met criteria for chronic fatigue syndrome
(CFS), a severe form of unexplained chronic fatigue associated with body pains and other
symptoms. Most CFS patients had sinus symptoms and many noted a sudden onset of their
illness, similar to people with sinusitis.
"We clearly need to do more research to see if sinus treatments alleviate fatigue and
pain. This study does, however, offer hope for possible help in the future." said
Adapted from materials provided by Georgetown University Medical Center.
Bad is Good: How Bacteria And Depression Are Related
BACTERIA cause disease. The idea that they might also prevent disease is counterintuitive.
Yet that is the hypothesis Chris Lowry, of Bristol University, and his colleagues are
putting forward in Neuroscience. They think a particular sort of bacterium might alleviate
The chance observation that Dr Lowry followed up to arrive at this conclusion was made by
Mary O'Brien, an oncologist at the Royal Marsden Hospital in London. Dr O'Brien was trying
out an experimental treatment for lung cancer that involved inoculating patients with
Mycobacterium vaccae. This is a harmless relative of the bugs that cause tuberculosis and
leprosy that had, in this case, been rendered even more harmless by killing it. When Dr
O'Brien gave the inoculation, she observed not only fewer symptoms of the cancer, but also
an improvement in her patients' emotional health, vitality and general cognitive function.
To find out what was going on, Dr Lowry turned to mice. His hypothesis was that the immune
response to M. vaccae induces the brain to produce serotonin. This molecule is a
neurotransmitter (a chemical messenger between nerve cells) and one symptom of depression
is low levels of it.
Dr Lowry and his team injected their mice with M. vaccae and examined them to find out
what was going on. First, they looked for a rise in the level of cytokines, which are
molecules produced by the immune system that trigger responses in the brain. As expected,
cytokine levels rose. They then looked directly in their animals' brains for the effect of
Cytokines actually act on sensory nerves that run to the brain from organs such as the
heart and the lungs. That action stimulates a brain structure called the dorsal raphe
nucleus. It was this nucleus that Dr Lowry focused on. He found a group of cells within it
that connect directly to the limbic system, the brain's emotion-generating area. These
cells release serotonin into the limbic system in response to sensory-nerve stimulation.
The consequence of that release is stress-free mice. Dr Lowry was able to measure their
stress by dropping them into a tiny swimming pool. Previous research has shown that
unstressed mice enjoy swimming, while stressed ones do not. His mice swam around
This result is intriguing for two reasons. First, it offers the possibility of treating
clinical depression with what is, in effect, a vaccination. Indeed, M. vaccae is
considered a bit of a wonder-bug in this context. Besides cancer, and now depression, it
is being looked at as a way of treating Crohn's disease (an inflammation of the gut) and
Second, it opens a new line of inquiry into why depression is becoming more common. Two
other conditions that have increased in frequency recently are asthma and allergies, both
of which are caused by the immune system attacking cells of the body it is supposed to
protect. One explanation for the rise of these two conditions is the hygiene hypothesis.
This suggests a lack of childhood exposure to harmless bugs is leading to improperly
primed immune systems, which then go on to look for trouble where none exists.
In the case of depression, a similar explanation may pertain. If an ultra-hygienic
environment is not stimulating the interaction between immune system and brain, some
people may react badly to the consequent lack of serotonin. No one suggests this is the
whole explanation for depression, but it may turn out to be part of it.
New therapy targets problem muscles, helps patients manage chronic pain
Jaime Mowery convulsed and screeched when therapist Chris Denham lightly touched her
abdomen. Mowery injured her feet seven years ago, but Denham barely touched them. Instead
he tapped, flicked and pressed key points on her legs, stomach and neck.
After Denham diagnosed Mowery's problem muscles, he began therapy. He had Mowery raise her
arms and resist him as he sporadically pushed them back. He said he's turning off muscles
in deep spasm using a new therapy called Primal Reflex Relief Technique, which he
demonstrated June 7 at an open house of the North Colorado Therapy Center.
Invented by John Iams, the technique is gaining popularity across the country for
therapists looking to help patients with chronic pain.
When Denham first heard of the technique three years ago, he thought it sounded a little
like voodoo. But he had patients who just didn't respond to his other techniques, so he
attended a training session.
"There was always a group of chronic pain people I couldn't seem to get anywhere
with," Denham said.
The first patient he used it on erased all of his skepticism. The woman had headaches,
numbness and tingling in her limbs. But after only one visit she felt much better. After
four visits, the patient no longer needed therapy.
Mowery's story is similar. She has reflex sympathetic dystrophy syndrome, which surfaced
as chronic pain after she fractured her foot seven years ago. She could only limp about
100 yards without sitting down, until she began therapy with Denham. After the first
visit, her pain was almost cut in half.
Denham not only offers treatment, but he gives his patients techniques to use at home.
Mowery pulls on the hair behind her ears, and at night will stretch opposite arms and
legs, looking up toward her hand, a move she said helps her feel more comfortable laying
down. Using the home techniques, Mowery is managing her own pain and hasn't seen Denham in
Denham said he sees the same results using Primal Reflex Relief Technique in patient after
patient. Three of his coworkers at the therapy center are also trained in the technique.
Although Denham said he doesn't know how the therapy works, the results are all he needs
to continue using it on his patients.
Denham doesn't employ the technique on every patient, though, it's simply one wrench in
his therapy toolbox. If a patient isn't responding, he tries something else.
But for some patients, the treatment is life changing.
"When it works, it's a blast. It's really cool," he said.
Prolotherapy is also known as nonsurgical ligament reconstruction,
and is a treatment for chronic pain
Prolotherapy is helpful for what conditions?
The treatment is useful for many different types of musculoskeletal pain, including
arthritis, back pain, neck pain, fibromyalgia, sports injuries, unresolved whiplash
injuries, carpal tunnel syndrome, chronic tendonitis, partially torn tendons, ligaments
and cartilage, degenerated or herniated discs, TMJ and sciatica.
What is prolotherapy?
First, it is important to understand what the word prolotherapy itself means.
"Prolo" is short for proliferation, because the treatment causes the
proliferation (growth, formation) of new ligament tissue in areas where it has become
Ligaments are the structural "rubber bands" that hold bones to bones in joints.
Ligaments can become weak or injured and may not heal back to their original strength or
endurance. This is largely because the blood supply to ligaments is limited, and therefore
healing is slow and not always complete. To further complicate this, ligaments also have
many nerve endings and therefore the person will feel pain at the areas where the
ligaments are damaged or loose.
Tendons are the name given to tissue which connects muscles to bones, and in the same
manner tendons may also become injured, and cause pain.
Prolotherapy uses a dextrose (sugar water) solution, which is injected into the ligament
or tendon where it attaches to the bone. This causes a localized inflammation in these
weak areas which then increases the blood supply and flow of nutrients and stimulates the
tissue to repair itself.
Historical review shows that a version of this technique was first used by Hippocrates on
soldiers with dislocated, torn shoulder joints. He would stick a hot poker into the joint,
and it would then miraculously heal normally. Of course, we don¡¦t use hot pokers today,
but the principle is similar¡Xget the body to repair itself, an innate ability that the
To explore more information on this topic go to:
What Is Eczema?
Preventing Flare Ups
To prevent or reduce eczema flare-ups, avoid exposure to extreme temperatures, dry air,
harsh soaps and bubble baths. Use blankets and clothing made of cotton instead of more
irritating fabrics, such as wool, or stiff synthetics, such as polyester. After showering
or bathing, pat dry (rather than rub) so you leave a little moisture on your skin. Then
apply a moisturizing cream or lotion to trap moisture in the skin. Use a humidifier to add
moisture to indoor air during the winter heating season.
To help to prevent contact dermatitis, avoid skin contact with irritating chemicals,
plants, jewelry and substances that trigger skin allergies. If you have severe varicose
veins, you can help prevent stasis dermatitis by wearing compression stockings and by
elevating your legs if you sit for long periods. Be alert for any reactions within 48
hours of using a medication. Antibiotics applied to the skin and taken by mouth can
trigger a skin reaction. If this happens, call your doctor to get a substitute medication.
To read more about this go to:
Could Cough Be Caused By Asthma?
Q: I had bronchitis two years ago, and I continue to have a cough. The doctors I've seen
are stumped ¡X they think asthma is the culprit, but nothing helps my cough. I've tried
inhalers and medicine, but nothing helps. I've had allergy tests done, all negative. What
should my next step be?
¡X Ellen, New York
A: If you have not already done so, the next step would be to see a pulmonologist ¡X a
lung specialist. Chronic cough commonly sends people to pulmonologists, who are usually
quite experienced at sorting it out. The most common causes of chronic cough (lasting
longer than about two months) in nonsmokers are postnasal drip (mucus running down the
back of the throat), asthma, and acid reflux (stomach acid that comes up and irritates the
throat). Also, medications for high blood pressure called ACE inhibitors are famous for
causing a persistent dry cough. If you are/were a smoker, then a different (and more
serious) list of problems must be considered. Assuming that you don't smoke and aren't
taking an ACE inhibitor, your diagnostic workup will start with the details of your
history to see if there is anything to suggest one of the three common causes I mentioned
Some key questions you have probably already been asked include:
Is your cough dry or wet?
Does mucus or phlegm come up?
Is there any detectable pattern to the cough: Is it worse first thing in the morning,
after meals, with exercise, or when you are trying to go to sleep at night? Does it ever
wake you up in the early-morning hours?
Can you feel any drainage down the back of your throat?
Do you have any nasal or sinus symptoms?
Do you ever have symptoms of acid coming up in your throat?
Is the cough worse after a spicy or heavy meal?
Have you noticed any other unexplained symptoms?
If the answers to these questions suggest a likely cause, a clinician would usually treat
you for that problem and see whether you improved. It sounds as if you've been treated for
asthma without improvement. If cough is your only symptom and asthma medicines didn't
help, I would look for another cause. A chest X-ray or other imaging test would help
exclude some lung diseases as well as the dreaded cancers (although these are a very rare
cause of cough in nonsmokers). Postnasal drip and acid reflux can both exist without their
characteristic symptoms. So identifying these problems may require a sinus CT scan to see
if you have some form of chronic sinus disease, or a special test for acid reflux, in
which a thin string with a tiny pH monitor is placed in your esophagus (food tube) for a
period of time to see if it registers the presence of acid. Some doctors will order these
tests early on, while others treat the patient for the presumed problem, and then diagnose
it based on response.
It sounds as though your cough started with an infection two years ago. That history may
prompt the pulmonologist to skip some of the tests I just described and focus instead on a
possible complication of that infection. Full pulmonary function tests (besides
spirometry, the quick office test in which you blow hard into a machine) may be helpful in
sorting out whether you have developed some type of lung disease. The rest of the workup
would depend on the results of this testing.
Finally, it is possible to find no obvious reason for a chronic cough, even after a
lengthy workup. In fact, this is relatively common. When this happens, the doctor may
attribute the symptom to an exaggerated sensitivity of the cough reflex. The "cough
reflex" refers to the complicated nerve circuit that is responsible for coughing; it
involves the brain, spinal cord, lungs, throat, and stomach. Sometimes after bronchitis
(infection of the large lung tubes) or pneumonia (infection of the deep lung tissue) ¡X
both of which cause inflammation and lots of coughing ¡X this circuit is left in a state
of heightened sensitivity, leading to coughing in response to minor everyday irritations
that would not normally have caused the person to cough However, an exaggerated cough
reflex is a diagnosis that should be made only when other problems have been considered
Exaggerated cough reflex can be tricky to treat. Dextromethorphan (a pill) or ipratropium
bromide (an inhaler) can be helpful. If the cough can be suppressed for a while, the
condition usually improves. I hope this information helps you make progress.
Ouch! It Hurts to Wear Clothes!
How to Dress for Less Pain with Fibromyalgia
From Adrienne Dellwo
Do your clothes make you hurt? Mine do! Bras, waistbands, even the tie on my old bathrobe
-- anything that puts pressure on my chest or abdomen can at times set off either burning
or intense, stabbing pains.
I've tailored my entire wardrobe to accommodate this particular symptom, but I've never
read a word about it anywhere. Wondering if I was crazy or if it was a common thing among
those of us with fibromyalgia syndrome (FMS), I asked about it in the About.com
Fibromyalgia and Chronic Fatigue forum.
Turns out, I'm not alone. A lot of people posted that they have the same problem and
thought they were the only ones. One woman described the pain as feeling like a
"terrible sunburn." Clothes can cause pain all over, on your tender points, and
on areas that are numb or tingly.
With the help of our forum users, I've put together these tips for dressing when you have
Always Late? Find Out Why
By Keith Ablow, M.D.
Some years ago when I was chief resident in psychiatry at the New England Medical Center,
I decided it was finally time to enter therapy myself. I was dating the woman who would
later become my wife and I wanted to explore why I hadn't yet committed to her.
So I booked an appointment with a noted psychiatrist, about 10 miles from my home, and
left early enough to get there on time. But 35 minutes later, I was lost amid curving
backstreets ¡X and already 15 minutes late.
I called the psychiatrist, apologized, and suggested we reschedule for another day.
"Haven't you been avoiding therapy long enough?" he asked me.
I thought about it. Part of me wanted to dismiss the idea that my ambivalence could have
turned me round and round until I was too late for my session. It seemed almost comical to
think that I couldn't even commit to figuring out why I couldn't commit in a relationship.
But I'd learned enough about the mind's defenses to know it was possible. It was also true
that I had waited until my final year of psychiatric training to start out on the road to
"Yes," I said. "It's been long enough."
"Then keep trying to find me," he said. "I'll wait for you, no matter how
much you wish I wouldn't."
Now, with the benefit of that therapy and 15 years spent treating my own patients, I know
that being late is a way many of us express a range of hidden emotions ¡X including
avoidance of uncomfortable situations. Here's what your lack of punctuality might be
saying about you ¡X or someone you care about ¡X and the keys to making a change.
To find out more about why you are late go to:
Know Your Family AQ
The American Autoimmune Related Diseases Association (AARDA) has launched its first-ever
national public service (PSA) campaign titled, "Know Your Family AQ," starring
well-known actress and longtime AARDA spokesperson Kellie Martin.
AQ is a play on IQ and stands for Autoimmune Quotient. How likely are you or a loved one
to develop an autoimmune disease? It is designed to educate Americans about the existence
of the close genetic relationship and common pathway of disease among autoimmune diseases,
which helps explain the clustering of these diseases in individuals and throughout
Click on this link for more information and advice for learning your family's AQ.
Improving Patient-Doctor Communication
by Karen Lee Richards*
The reluctance of many patients to confide fully in their physicians is a serious concern,
with responsibilities on both sides.
A survey was recently conducted by ProHealth asking the question: ¡§Do you feel safe
talking truthfully about your illness or symptoms with your doctor?¡¨ If the answer was
¡§no,¡¨ respondents were asked, ¡§Why not?¡¨
Fifty-seven percent of those who responded said they did not feel safe ¡V a startling,
albeit not entirely surprising, statistic. More than half of those answering the survey
said they do not feel safe enough to be honest with their doctors about their illness. On
the positive side, 43% are comfortable and feel safe being truthful with their doctors.
But when you consider the fact that we are literally entrusting our lives to our doctors,
the inability of so many to be honest with them is a serious concern.
Reasons We May Not Feel Safe
Following are the top 10 reasons patients gave for why they do not feel safe communicating
truthfully with their doctor (in order of frequency):
1. Doctor doesn¡¦t listen or care.
2. Doctor attributes symptoms to depression or other psychological problems.
3. Doctor doesn¡¦t understand or believe in my illness.
4. Doctor doesn¡¦t believe me.
5. Patient fears being labeled a complainer or hypochondriac.
6. Doctor trivializes my symptoms.
7. Patient fears being labeled a drug seeker.
8. Too many symptoms; doctor doesn¡¦t want to deal with them all.
9. Doctor is judgmental.
10. Patient fears being ¡§marked¡¨ by insurance companies.
Other reasons mentioned are that: patient fears that medications will be taken away,
doctor tries to give too many medications, doctor is tired of hearing complaints, patient
is in denial about illness, patient fears more tests being done, patient is embarrassed,
patient feels there is a lack of confidentiality.
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