Thriving with Fibromyalgia

Antidepressants and blood vessel construction

I just came across interesting factoid that explains why my hands and feet are always cold.  It turns out that antidepressants cause constriction of the blood vessels to the feet and hands (peripheral vasoconstriction) and reduces blood flow to the muscles.

Charles J. Vierck, Ph.D., Department of neuroscience at the University of Florida College of medicine in Gainesville recommends that the "effects of chronic antidepressant administration on peripheral blood flow of chronic pain patients should be investigated thoroughly."  So in other words, nobody really knows what happens if you have to use antidepressants for a long time, and nobody has really thought about the impact that the reduced blood flow will have on your skin, your major sensory organ, and your muscles, which are always sore when you have fibromyalgia.

This is in an article that will be published in the Journal of Pain sometime in 2007, called "fibromyalgia: combining pharmacological and non-pharmacological approaches to treating the person, not just the pain."  The first author is Dennis C. Turk.

The myth of interdisciplinary pain care

It seems like every article I read talks about how important it is to get interdisciplinary care for your pain.  For example, you should have physical therapy, appropriate medication, education of the patient and the family members, and cognitive behavioral therapy.  I got a prepublication view of a 2007 article that's going to be printed in the American Pain Society's "The Journal of Pain," fibromyalgia: combining pharmacological and non-pharmacological approaches to treating the person, not just the pain.  The authors are Dennis C. Turk, Charles J. Vierck, Elizabeth Scarborough, Leslie J. Crofford, and Nathan J. Rudin.

These are terrific experts, who have very interesting information from different perspectives.  The bottom line is that they stress the importance of having a team of doctors who are all focused on the well-being of the patient.  So you have to wonder what kind of fairy tale world they live in.  Most people feel lucky if they can find one doctor who takes them seriously and actually tries to find something to help them, much less a team that actually communicates with each other.  I have never yet had a doctor who offered to educate my family.

Fibromyalgia Treatment

What is the "right" treatment for fibromyalgia?  Too often, patients go from doctor to doctor with various symptoms, and eventually get classified as hypochondriacs or nuts.  Many doctors admit to not knowing how to treat fibromyalgia, and some just pretend that the patient is overstating how bad they feel.

In 2004, the American Pain Society funded a panel of doctors to develop up to date guidelines for the best treatment of fibromyalgia, based on a review of studies published in peer-reviewed medical journals.

This is really important, because it means that this review was based on studies that had to pass through a lot of scientific scrutiny in order to get published.  The studies had to be done correctly, so that it was clear whether the treatment did its job, and changes in how patients felt were not just based on chance.  A total of 505 articles were reviewed.

The bottom line: the authors recommend treatment including education about fibromyalgia, medications, exercise, and cognitive therapy.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15547167&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Patient education

Patient education and careful goalsetting are crucial to improving your life with fibromyalgia.  The American Pain Society developed up-to-date evidence-based guidelines for the best treatment of fibromyalgia (see the Journal of the American Medical Association, volume 292, number 19, November 17,2004) http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15547167&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

In addition to getting medication that will help with pain and sleep, patient education was shown to improve the lives of fibromyalgia patients for up to 12 months afterwards.  Some doctors are worried that if they tell their patients may have fibromyalgia, the patients will actually feel worse afterwards and come up with more symptoms.  However, a research study showed this was not true.  In fact, patients felt a lot better after getting a diagnosis and getting some education about how to cope with fibromyalgia.  Education combined with cognitive behavioral therapy (learning how to change the way that you think about your pain) and exercise was shown to be the most helpful approach in addition to medications.

Travel tips for fibromyalgia patients

I recently had to go on a 3000 mile business trip, leaving on a Monday morning and coming back late at night on Thursday.  Here are a few tips for people traveling with fibromyalgia.  First, I packed a box with items like pillows, egg crate foam mattress cover, extra clothes, and duplicates of all of the liquids I use such as toothpaste, and lotion and so on.  I shipped the box to the hotel, with my name as a guest.  Generally, I use UPS ground because it is the cheapest, and it has normally work very well for me.  In this particular instance, the box did not arrive in the five days it was supposed to (five business days).  This left me with the hassle of tracking down the box and receiving it a day late.

The second tip is to pack only a small carry-on suitcase with prescription medications and a change of clothes.  Most hotels will provide an emergency supply of toothpaste, toothbrush, lotion, shampoo and so on.  Since I have difficulty pulling even a small suitcase, I request assistance, which means the indignity of riding in a wheelchair, but at least I don't arrive already sore from over exerted muscles.  A friend of mine mentioned that putting your arm in a sling is a terrific way of getting all kinds of help without embarrassment.

I bring with me on the plane a small inflatable pillow to put in the small of my back, since airplane seats are designed to be disastrous.  I also use therma wraps, those small self heating items that can be applied with adhesive and last for eight hours.  They really keep the muscles in my back from tightening up while I'm sitting for long periods of time.  I do get up and down frequently during the flight, which means that I need to request an aisle seat.

Having medications to help you sleep especially when you are flying east is a big benefit.  It is challenging enough to get your body to go sleep three hours early, without the added challenge of an over vigilant nervous system.

How effective are non-drug ways to treat fibromyalgia?

Julius Sim and Nicola Adams published an article in the peer-reviewed journal "the Clinical Journal of Pain," volume 18 (5), September/October 2002 pages 324 to 336.  They looked for good studies of treatments for fibromyalgia that did not involve medication.  From 1980 to 2000 they searched databases for what are called randomized controlled trials, where people are assigned by a chance to either the treatment or a control group.  These are considered the best kinds of trials for determining whether something really works, because you can tell whether it is really the treatment that is making the difference, not that the people who got the treatment were different in some way.

Bottom line, they only found 25 randomized controlled trials, including exercise therapy, educational interventions, relaxation therapy cognitive behavioral therapy, acupuncture, and forms of hydrotherapy.  The quality of the studies was pretty bad, and some of them had such small numbers of people in them that it was hard to tell whether something really worked.  Their conclusion was that this there is decent evidence for aerobic exercise, but they couldn't really tell much about the other types of treatment.  They decided that there need to be larger, better studies in this area.

Exercise and fibromyalgia

I just found an interesting article reviewing 16 trials of 724 fibromyalgia patients assigned to different exercise groups.  If you're interested, the article is Busch AJ, Barber KAR, Overend TJ, Peloso PMJ, Schachter CL.  Exercise for treating fibromyalgia syndrome.  Cochrane database of systematic reviews 2002, issue two.  The article number: CD003786. DOI: 10.1002/14651858.CD003786.

There were four studies of high enough quality for the review focusing on aerobic training.  These showed significant improvements in the exercise group compared with the control group in aerobic performance, tender point pain and pressure threshold, and improvements in pain.  However, the exercise protocols were often poorly described, with insufficient information about intensity, duration, frequency and mode of exercise.  Also, "adverse events" were also poorly reported.  That means they didn't talk about people who had problems with the exercises.  There weren't enough good studies about muscle strengthening our flexibility training to draw any conclusions.

I find particularly helpful on article by Kim DuPree Jones Ph.D. and Janice Holt Hoffman,  "exercise and chronic pain: opening the therapeutic window," Functional U, volume 4 number one January to February 2006.  These two authors are up at Oregon Health Science University, one of the major places in the United States that has been doing great research on fibromyalgia for several years.  In other words, these people have actually been working with exercise and fibromyalgia patients for a long time. 

The main points in the article are that if you over exercise, you can create more pain.  Exercise is important and fibromyalgia, and can make you feel better, but you don't want to do it to the point of increasing pain levels.  A lot of people who try to exercise with fibromyalgia may find that it hurts during exercise, but they may also find that muscle soreness happens 24 to 48 hours after exercising.

So how do you get more exercise without the pain?  First, have good posture and learn how to relax your muscles.  Second, learn how to stretch gently.  Third, strengthen your muscles using core muscle balanced techniques, and fourth do aerobic exercises like walking.  Do only one step at a time.  In other words, start with learning how to stand and sit in good posture and how to relax your muscles.  Only after you feel comfortable with that should you go on with learning gentle stretching techniques.  When you are trying to strengthen your muscles, keep your movements close to the midline of your body.  Don't do overhead repetitions; keep your arms below shoulder level.  When you start trying to do aerobic exercising, always do less than you think you can, so you won't end up being sore.  Increase very gradually.

Dead hard drive

Sorry I haven't posted for awhile.  The hard drive in my computer died.  Unfortunately, I lost my card file with the index system to my fibromyalgia references.  It's going to take me awhile to re-create it.  The only good side of that it is the I realize how many more articles are being published currently than even last year!  You know that fibromyalgia has finally hit the mainstream when it gets into the "USA Today" weekend edition.  The October issue had an article about the FDA approval of Lyrica, which is the only FDA approved drug specifically for that condition.  Of course, it was approved back in June, but at least there's some recognition if belated.  www.fibroinfoservice.com

Learning to live with pain

"It's a change in focus from living in pain to living with pain," my counselor says helpfully.

And so I try to imagine that,
coming up instead with the mental image of
living with a nagging mother-in-law who insists on coming along,
complaining at every outing.
"I can't stand too long in lines," at museums, at parties, she reminds.
"I can't sit in a metal folding chair," she says at the church potluck.

She's no help around the house, either.
"I can't lift the kids anymore, you know."  Or the laundry, or the dishes, either.

I wish she'd go back home, this pain in the neck, thorn in the side, pain in the butt, backbreaking woman.

Abnormalities in the skin of fibro patients

Clin Rheumatol. 2007 Oct 3; [Epub ahead of print]
Characteristic electron microscopic findings in the skin of patients with
fibromyalgia-preliminary study.
Kim SH, Kim DH, Oh DH, Clauw DJ.
Dongguk University College of Medicine, Gyeongju, South Korea,
junjan@dongguk.ac.kr.
This blinded study was done to determine if there are any abnormal electron
microscopic (EM) findings in the skin of fibromyalgia syndrome (FMS) patients,
which might contribute to or be due to the increased pain sensitivity seen in
this condition. Skin biopsy samples were obtained from 13 FMS patients and 5
control subjects.  Biopsies were read by an individual without knowledge of participant
status. Five skin biopsies from healthy controls showed relatively even
distribution of variegated sized unmyelinated axons sheathed well by
complicatedly folded Schwann cell membranes. In tissues from 9/13 FMS patients,
unmyelinated Schwann cells were noted to be ballooned, whereas this finding was
not noted in any controls (p = 0.029). Axons in most patients trended towards
being localized in the periphery of the unmyelinated Schwann cell sheaths (p =
0.002). Particularly, peripheral localization of axon in the unmyelinated Schwann
cell sheath had a strong relationship with ballooning of Schwann cell (p =
0.042), simplified folding of Schwann cell sheath (p = 0.039) and smaller axon (p
= 0.034). Myelinated nerve fibers were unremarkable. The EM findings seen in the
skin of FMS patients show unusual patterns of unmyelinated nerve fibers as well
as associated Schwann cells. If these findings are replicated in a larger study,
these abnormalities may contribute to, or be due to, the lower pain threshold
seen in FMS patients.