Thriving with Fibromyalgia

Estrogen receptors and pain

New research shows that there is more than one estrogen receptor.  We're familiar with the estrogen alpha receptor.  This is the one that can go bad and signal cells to multiply uncontrollably, resulting in breast or ovarian cancer.  Now scientists have discovered estrogen receptor beta, that seems to put the brakes on cell growth.  A team led by Heather Harris of Wyeth Research in Collegeville, PA, found that drugs that increase estrogen receptor beta decrease inflammation.  Jan Ake Gustafsson has also been working with estrogen receptor beta in Sweden.  Women taking aromatase inhibitors for breast cancer had a bad side effect - intense pain all over their bodies. That is because the aromatase inhibitors were stopping estrogen receptor beta along with alpha.

See www.sceincenews.org, Jan. 5, 2008 vol. 173, " A Different Side of Estrogen."

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Fibromyalgia-a different type of pain

One of the problems that many people with fibromyalgia face is that there are no tests that definitively show that you have fibromyalgia.  However, what scientists have learned quite a bit about what causes fibromyalgia what goes wrong to create whole body pain.  There are some genetic factors that have been shown to be related to a higher risk of getting fibromyalgia.  In addition, stress can be a factor, including physical, like car accident, viral infections, repeated intense emotional stress, and other autoimmune disorders.

It is clear that there is too much activity in the nervous system, and the whole central nervous system becomes hypersensitive.  Brain scans of people with fibromyalgia and examination of spinal fluid have shown that fibromyalgia is a real thing, not something that is "just in your head."

Dadabhoy D, Clauw D. therapy in sight: fibromyalgia-different type of pain needing a different type of treatment.  Nature clinical practice rheumatology posted 07/12/2006.

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Dopamine and fibromyalgia

Dopamine is a chemical in your brain that is used to send messages to the nerve cells or neurons in your brain that control your muscles.  James Parkinson figured out in 1817 that the tremors and speech problems seen in what we now call "Parkinson's disease" were improved by giving dopamine.  Before that, people with Parkinson's disease were sent to mental hospitals (because doctors then thought if you can't figure out the cause for a disease, it must be "all in your head").

Fibromyalgia patients still find that doctors think their symptoms are "all in their heads."  Andrew J. Holman, M.D., an assistant clinical professor at the University of Washington in clinical rheumatology, did some studies with medications that increase dopamine in your brain.  Since it cannot be easily measured, dopamine has not attracted much attention from doctors before.  Dr. Holman wondered if the sleep problems and other muscle problems that fibromyalgia patients have could be improved by the same medicine that is used for patients with restless leg syndrome.  Mirapex, or pramipexole, was given to fibromyalgia patients.  Patients found a tremendous benefit, and it also seems to help with depression.

No pill treatments for fibromyalgia

Is there anything that really works for fibromyalgia aside from medications?  This was the subject of a systematic review of the literature, published in a peer-reviewed journal.  After doing their review of articles, they came up with 25 randomized controlled trials.  These are considered the gold standard of figuring out whether something works or not.  It means that people are assigned by chance to either get the treatment or not get treatment, and that information about whether you are getting the treatment or not is not available to the person doing the analysis.

The studies covered exercise therapy, educational intervention, relaxation therapy, cognitive behavioral therapy, acupuncture, and forms of hydrotherapy.  They found a lot of problems with the studies, with poor methodology, small numbers of people involved, and not enough statistical power to really give a good outcome.  The longest follow-up was 16 weeks.

The bottom line from all this was that strong evidence did not emerge for any single intervention, although there was some good support for aerobic exercise.  They ended by recommending more studies in the area.

Sim J, Adams N. systematic review of randomized controlled trials of non-pharmacological interventions for fibromyalgia.  The clinical Journal of pain, volume 18 (5), September/October 2002.  324-336.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=12218504&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Treatments for irritable bowel syndrome

Too many bacteria in the small intestine (small intestinal bacterial overgrowth) is often the cause of irritable bowel syndrome.  One way to test for this is to see if patients have more methane on their breath after they eat some lactulose (lactulose breath test). One study showed that treating irritable bowel syndrome patients with non-absorbable antibiotics resulted in the symptoms going away completely.  This can happen after only 10 days of rifaximin, a non-absorbed oral antibiotic that acts mostly in the small intestine.  Even after patients stopped the antibiotics, they still felt better.  Probiotics have also been used in studies of irritable bowel syndrome with good results.

Othman M, Aguero R, Lin H. Alterations in intestinal microbial flora and human disease (Gastrointestinal infections: edited by Edgar C. Boedeker).

Bugs in your gut

It's not something we usually want to think about, but all of us are born with a variety of "bugs" in our intestines.  Shortly after birth, hundreds of species of bacteria and archaea establish themselves in the colon.  There are over 400 species of microbes that are normally concentrated in the colon, but surprisingly, the small intestine is not supposed to have very much.  When you get too much bacteria in the small intestine, it is called small intestinal bacterial overgrowth, or SIBO.  This can cause a lot of health problems, and has been shown to make acute pancreatitis worse, to cause irritable bowel syndrome, to make inflammatory bowel disease worse, and to be related to fibromyalgia.

Othman M, Aguero R, Lin H. Alterations in intestinal microbial flora and human disease (gastrointestinal infections: edited by Edgar C. Boedeker).

Medicines for fibromyalgia

There is only one medication that has been approved by the Food and Drug Administration specifically for fibromyalgia.  It is Lyrica; the generic name is pregabalin.  Lyric is in a class of medications called anticonvulsants that were originally developed for treating seizures and also for nerve pain.  Some of the benefits of Lyrica include improved sleep, less fatigue, less pain and a better quality of life.  Side effects include dizziness, sleepiness, and sometimes swelling of the feet.  The most commonly prescribed medication for fibromyalgia is antidepressants.  Several different studies have shown that antidepressants do help with sleep, tenderness and stiffness.  The most commonly prescribed antidepressant is in the tricyclic category.  Studies have shown mixed results in terms of antidepressants called selective serotonin reuptake inhibitors and dual acting serotonin and noradrenaline reuptake inhibitors.

Turk DC, Vierck CJ, Scarbrough E, Crofford LJ, Rudin NJ.  Fibromyalgia: combining pharmacological and non-pharmacological approaches to treating a person, not just the pain.  Journal of Pain, 2007 Oct 10.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17936075&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Restless legs syndrome

It turns out there's a connection between restless legs syndrome and small intestinal bacterial overgrowth (SIBO).  Restless legs syndrome occurs in many patients with fibromyalgia.  In this study, patients who had irritable bowel syndrome received treatment to take care of the bacterial overgrowth.  10 of the 13 patients that were included in the study had at least an 80% improvement in their restless legs symptoms once the bacterial overgrowth problem was taking care of.  Too bad the study didn't look at whether the fibromyalgia symptoms improved after this treatment.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17934858&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Your dentist and fibromyalgia

It turns out that your dentist should be looking for a few things when you go for your regular exam if you have fibromyalgia.  A lot of fibromyalgia patients also have problems with job pain, headaches, and other oral complaints.  The dentist should be looking at whether you have sore muscles in your jaws and any problems with your bite.  The dentist should also check to see if you are grinding your teeth at night.  All of these problems can contribute to your fibromyalgia pain.  Headaches are reported by half to almost all of fibromyalgia patients, depending on the study.  Migraines and chronic headaches are pretty common.  Other oral complaints include dry mouth, a burning pain in the time, and a bad taste in the mouth.  These complaints can often be related to the medicines that are prescribed for fibromyalgia.

One little gem from this article is that antidepressants called SSRIs can often increased tooth grinding at night.

How can you tell fibromyalgia and chronic fatigue apart?

An interesting article in the Archives of Internal Medicine 2000; 160:221-227 by Leslie AAron, Mary Burke, and Dedra Buchwald "overlapping conditions among patients with chronic fatigue syndrome, fibromyalgia, and temporomandibular disorder."  Here are some of the symptoms that are common to both fibromyalgia and chronic fatigue: muscle pain, aching or discomfort; problems falling or staying asleep, or sleeping too much; waking up feeling tired, and refreshed after a full night's rest; difficulty concentrating or thinking, forgetfulness ; abdominal pain relieved by a bowel movement; hard, loose, or watery stools.  The symptoms that are unique to chronic fatigue include: fatigue more than six months; fatigue resulting in a 50% reduction of normal activity; unexplained weakness in muscles; migratory arthralgias without redness or swelling; burning, shooting, or throbbing muscle pain.  Chronic fatigue syndrome can also include a mild fever or chills on a sore throat.  Symptoms unique to fibromyalgia include that the pain can be made better by heat or massage, and that pain is made worse by sitting or standing.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=10647761&ordinalpos=19&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum