What Are Researchers Learning About Fibromyalgia?

NIAMS sponsors research that will improve scientists’ understanding of the specific problems that cause or accompany fibromyalgia, in turn helping them develop better ways to diagnose, treat, and prevent this syndrome.
The research on fibromyalgia supported by NIAMS covers a broad spectrum, ranging from basic laboratory research to studies of medications and interventions designed to encourage behaviors that reduce pain and change behaviors that worsen or perpetuate pain.
Following are descriptions of some of the promising research now being conducted:
Understanding pain. Research suggests that fibromyalgia is caused by a problem in how the body processes pain, or more precisely, a hypersensitivity to stimuli that normally are not painful. Therefore, several NIH-supported researchers are focusing on ways the body processes pain to better understand why people with fibromyalgia have increased pain sensitivity. These studies include:

• An investigation into the relationship between variations in a gene called ADRA1A and risk factors for chronic pain conditions.
• The establishment of a tissue bank of brain and spinal cord tissue to study fibromyalgia and to determine the extent to which chronic pain in fibromyalgia patients is associated with the activation of cells in the nervous system and the production of chemical messengers, called cytokines, that promote inflammation.
• The use of imaging methods to evaluate the status of central nervous system responses in patients diagnosed with fibromyalgia compared with those diagnosed with another chronic pain disorder and pain-free controls.
• An investigation to understand how the activation of immune cells from peripheral and central nervous system sources trigger a cascade of events leading to the activation of nerve cells, chronic pain, and the dysregulation of the effects of analgesic drugs against pain.
• An intensive evaluation of twins in which one of the pair has chronic widespread pain and the other does not, along with twins in which neither of the pair has chronic pain, to help researchers assess physiological similarities and differences in those with and without chronic pain and whether those differences are caused by genetics or environment.
• A study examining the use of cognitive behavioral therapy in pain patients, which researchers hope will advance their knowledge of the role of psychological factors in chronic pain as well as a new treatment option for fibromyalgia.
• The Patient-Reported Outcomes Measurement Information System (PROMIS) initiative. The PROMIS initiative is researching and developing new ways to measure patient-reported outcomes (PROs), such as pain, fatigue, physical functioning, emotional distress, and social role participation that have a major impact on quality-of-life across a variety of chronic diseases. The goal of this initiative is to improve the reporting and quantification of changes in PROs. NIAMS supports an effort to develop PROMIS specifically for use in patients with fibromyalgia.

Improving Symptoms. A better understanding of fibromyalgia and the mechanisms involved in chronic pain are enabling researchers to find effective treatments for it. Some of the most promising lines of research in this area include the following:

• Increasing exercise. Although fibromyalgia is often associated with fatigue that makes exercise difficult, regular exercise has been shown to be one of the most beneficial treatments for the condition. A new NIAMS-supported study is trying to determine whether increasing lifestyle physical activity (that is, adding more exercise such as walking up stairs instead of taking the elevator) throughout the day produces similar benefits to exercise for fibromyalgia, improving symptoms such as pain, fatigue, and tenderness. The study is also examining the potential mechanisms by which lifestyle physical activity might influence symptoms. Other research supported by NIAMS is examining the effectiveness of a 16-week program of a simplified form of Tai Chi on pain and other measures such as sleep quality, fatigue, anxiety, and depression.
  NIAMS-supported research is also examining ways to help people maintain helpful exercise programs. Because many people with fibromyalgia associate increased exercise with increased pain, doctors and therapists often have a difficult time getting patients to stick with their exercise program. The new research is examining patients’ fears that cause them to avoid exercise as well as behavioral therapies to reduce fears and help them maintain exercise.
• Improving sleep. Researchers supported by NIAMS are investigating ways to improve sleep for people with fibromyalgia whose sleep problems persist despite treatment with medications. One team has observed that fibromyalgia patients with persistent sleep problems share characteristics with people who have sleep-disordered breathing—a group of disorders, the most common of which is the obstructive sleep apnea, characterized by pauses in breathing during sleep. These researchers are studying whether continuous positive airway pressure (CPAP, a therapy administered by a machine that increases air pressure in the throat to hold it open during sleep) might improve the symptoms of fibromyalgia.
  Other groups of researchers are examining the link between sleep disturbance and chronic pain in fibromyalgia and are studying whether behavioral therapy for insomnia might improve fibromyalgia symptoms.
• Studying new treatments. In addition to exercise and improving sleep, NIAMS-supported researchers are looking at different ways to reduce pain and other symptoms of fibromyalgia. Potential therapies under study include transcranial magnetic stimulation (TMS) and vagus nerve stimulation.
  TMS is a therapy in which an electrical current is passed through an electromagnetic coil placed on the scalp, inducing a small electrical current within the underlying cortex. Recent research shows that the therapy not only decreases depressive symptoms in depressed patients, but also is effective in reducing pain. The new study will examine whether TMS is effective in improving pain in people with widespread chronic pain disorder, including fibromyalgia.
  Vagus nerve stimulation is a treatment that uses a device similar to a pacemaker to administer regular, mild pulses of electrical energy to the brain by way of the vagus nerve. The vagus nerve runs from the brain stem to the lower abdomen and controls body functions, including heart rate, that are not under voluntary control.

Where Can People Get More Information About Fibromyalgia?

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Information Clearinghouse National Institutes of Health

1 AMS Circle Bethesda,  MD 20892-3675 Phone: 301-495-4484 Toll Free: 877-22-NIAMS (877-226-4267) TTY: 301-565-2966 Fax: 301-718-6366 Email: NIAMSinfo@mail.nih.gov Website: http://www.niams.nih.gov

Sorry-It's Been A While Since My Last Post

My life has gone from no job to an "on call" position at Macy's in Kenwood, to another part time position for Alliance Rehab.  Two days later that job with Alliance went from part time 20 hours a week to 4o hours a week traveling from one nursing/retirement home to another on in Hyde Park.  Then  a week later Alliance decided that my daughter couldn't be my supervisor so then it went back to part time and only going to the Hyde Park location.  At the same time I was interviewing for a full time position in Lexington that eventually fell through.  I was offered a full time job with Macy's in the men's shoe department, but we all know there is no way that I could do that to my body on a full time basis. I took a part time night position in my same department and now I can at least accumulate PTO and holiday pay.

So now I have 2 part time jobs and still looking for that full time job.  Needless to say, it's been a little crazy.

What I'm really excited about is that my medical benefits should be good to go in June - At which point I am making an appointment with a Rhuematologist to finally find relief from all this pain. I not only have Fibromyalgia, but also Arthritis.  I want to know what kind I have and see if there is any new pain meds I can use for both.  This weather doesn't help either.

Will the sun ever shine again?????

I love these Card Organizers

http://www.cardcubby.com/referafriend/?bl=amVyb2JlcnRzb24wNjE2QHlhaG9vLmNvbQ==

The Fibro Five

The "Fibro Five" is a term referring to:

• Fibromyalgia
• Interstitial Cystitis
• Chronic Fatigue Syndrome
• Migraine Headache
• Irritable Bowel

Getting ready to run out of my fibro medicine this week.  The place I have been getting my Rx's from has a hard time getting it.  You see since I have been off work  I haven't been able to afford the prescriptions I take daily. The Savella cost about $150 per month.  I found a local non profit pharmacy that deals with indigent patients who cannot afford their medicine.  The problem is they can't get all medications.  Savella is a fairly new one and they rely on getting sample from doctors offices to replenish their stock each week.  So I will either do without our try and come up with the money to purchase it on my own.  Not having medical benefits really sucks.  I think we become so spoiled in our everyday lives sometimes.  We take things for granted.  I will never do that again.  I want to work.  I hate being off.  My job at Macy's has saved me from boredom and at least gives me some money to pay for necessities i.e. gas, storage fee, phone.  Here's hoping I get a job soon. 

How Fibromyalgia Affects Men

Men With Fibromyalgia Talk About Their Symptoms, Diagnosis, and Dealing With Other People's Reactions

By Matt McMillen
WebMD Feature

Reviewed by Laura J. Martin, MD

Randy Wold, 58, was an auto mechanic, an excellent golfer, and a bowler who never scored below 200. Then, nearly 10 years ago, when he was suffering from intense chronic pain, he received a surprise diagnosis. His doctor told him he had fibromyalgia.
A neurological disorder that causes chronic pain and fatigue, fibromyalgia strikes mostly women. Of the estimated 5 million adults with fibromyalgia in the U.S., as few as 10% are men. For that reason, the popular perception of it as a women's disease has persisted, even among fellow patients.
"When I first went to a support group meeting, it was all women," says Wold, who is now on the board of the National Fibromyalgia Association - and the only male board member with the disease. "Some didn't want me there."
A neurologist who Wold consulted wouldn't see him, discounting his diagnosis and accusing him of angling to get disability payments.
"It's a tough deal for a man to have fibromyalgia," says Wold, who is no longer able to work and can only occasionally hit the links or the lanes. "One of my best friends doesn't believe I have it," he says. "His wife, who is a doctor, told him men can't get it, that it is in my head. That kind of hurt."

A Letter to Family and Friends About Fibromyalgia (FMS)

Having FMS means everything has changed and a lot of these changes are invisible.  Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who mean the most to me, these are the things I would like for you to understand about me.

Please understand that being sick doesn’t mean that I’m not still a human being.  I have to spend most of my day in considerable pain and exhaustion, and even if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about my family, friends and work.  And most of the time I’d like to hear you talk about what’s going on with you and your families.

Please understand the differences between “happy” and “healthy”.  When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years.  I can’t be miserable all the time, in fact I work hard not being miserable.  So if you’re talking to me and I sound happy, It means I am happy.  That’s all.  It doesn’t mean that I am not in a lot of pain, or extremely tired, or that I’m getting better. I want you to understand that being able to (stand, sit, walk, be sociable, or think) for ten minutes, doesn’t necessarily mean that I can (stand, sit, walk, be sociable, or think) for twenty minutes or an hour.  And just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today.  With FMS it gets confusing. I want you to understand that FMS is variable.  It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have difficulty making it to the kitchen.  Please don’t say “well you did it before”.  If you want me to do something, then ask if I can? In a similar situation, I may have to cancel an invitation from you at the last minute. Please understand that “getting out and doing things” does not make me feel better, and can only make me seriously worse.  Telling me that I need to exercise, join a gym, loose or gain some weight, or try classes..may frustrate me to tears and is not correct.  Don’t you think that if I was capable of doing these things I would do them.. After all, if you know me at all, you know that I have always been the opposite of the way I am now.  I am working with my doctor and physical therapist and already doing the exercises and diet that I am suppose to do. Another statement that hurts is “you need to push yourself more, exercise harder…”  Having FMS also means that I have extra numbers of nerve endings in my body.  This is why I feel pain so much more than the normal person. Some days  certain smells make me so ill and give me the worst headaches.  Then the next day I could smell the same candle or perfume and not have a reaction at all.   FMS deals directly with muscles and because my muscles don’t repair they ways yours do, this does far worse damage than good and could result in a recovery time of days, weeks or months from one single activity.  Also, FMS may cause secondary depression (wouldn’t you get depressed if you hurt and were exhausted for months and years on end!?) FMS is not created by depression.  Depression is a result of FMS.  FMS does not forgive.  If I have to sit down, take medication, It means I have to do it now!  Please don’t try and suggest a cure or treatment.  Believe me if it’s out there I have tried to read it by now.  FMS affects over 6 million women and men (yes men)

If after reading this you would like to read more or give me articles/books to read I am very open for suggestions.  After all, I can’t possibly read everything out there.  I depend on you, the friends and family who are not sick –I need you to visit me - call me – ask me out for lunch –Sometimes I may need you to shop for me, clean, take me to the doctor.  You are my connection the outside world and as much as possible I need you to understand me.  No matter what role you play in my life.

I love you all very much. 

Sunny Days Make me Feel Sooooo Good!

WOW!!! What a beautiful day today is - I feel pretty good today. I actually got out and cleaned my car and made some room in the garage for some furniture items.  I so look forward to warmer days.  My fibro is always worse in the winter and on rainy days.  It really does mimic Arthritis.  But I also have Arthritis.  Most days  the fog is gone and the muscle twitches are rare.  Thanks to my newest fibro drug Savella.  It really has helped those symptoms.  I was on  3 other medications before I found Savella.
I have been taking it for almost a year now.  It has made a world of difference. Before taking Savella, I had tried Neurotin, Lyrica, and Cymbalta.  All either did not help or gave me other problems.  My hope is that you find the medicine that's right for you.

Amazon.com: Second Spring: Dr. Mao's Hundreds of Natural Secrets ...

Featured Read

Another Book I recommend is:
Claudia Marek. The first year--fibromyalgia an essential guide for the newly diagnosed, New York:Marlowe, 2003.

Sleep Disturbances Are Common in Fibromyalgia Patients

Fibromyalgia, Restless Legs Syndrome Overlap

Many People With Fibromyalgia May Also Have Restless Legs Syndrome and Poor Sleep Quality, New Study Finds

By Bill Hendrick
WebMD Health News

Reviewed by Laura J. Martin, MD

Oct. 15, 2010 -- People who have fibromyalgia are much more likely to also have restless legs syndrome, according to a new study. Restless legs syndrome is a baffling disorder that causes uncomfortable sensations in the legs and/or the urge to move the legs.
The study, published in the Oct. 15 issue of the Journal of Clinical Sleep Medicine, found that 33% of people with fibromyalgia also had restless legs syndrome, compared to 3.1% who did not have fibromyalgia.
The findings are important because sleep disruption caused by restless legs syndrome may exacerbate the symptoms of fibromyalgia, researchers say.
But the good news, they say, is that restless legs syndrome can be treated and may improve the quality of life of people who have fibromyalgia.
Fibromyalgia affects 2%-4% of the U.S. population and is more common in women, according to the American College of Rheumatology.

A Visual Guide to Fibromyalgia

Sleep Disturbances Are Common in Fibromyalgia Patients

“Sleep disruption is common in fibromyalgia and often difficult to treat,” Nathaniel F. Watson, MD, one of the authors and an associate professor of neurology at the University of Washington in Seattle, says in a news release. “It is apparent from our study that a substantial portion of sleep disruption in fibromyalgia is due to restless legs syndrome.”
The study involved 172 people with fibromyalgia, 93% of whom were women. They were compared with 63 people who were free of pain and fatigue. Those in the control group were younger, with a mean age of 41, compared to 50 for those with fibromyalgia.
 A measure of sleep quality showed that problems with sleeping were more severe among people with fibromyalgia and restless legs syndrome.
The researchers conclude that a substantial portion of sleep disturbance found in patients with fibromyalgia may be related to restless legs syndrome.
They suggest that doctors routinely ask fibromyalgia patients about the symptoms of restless legs syndrome, because treatment may improve their sleep and quality of life.

Why So Many Medications?

What really baffles me is why my primary care doctors kept prescribing medications for each illness/symptom.  At one point I was on medications for : high blood pressure, cholesterol, depression, restless leg syndrome, neck and back pain, muscle pain, insomnia, and irritable bowel syndrome,  Why couldn't the doctors put all my symptoms on a "white board" (like they do on the TV series "House") instead of the easy fix of just adding a new prescription?  Finally after years of misdiagnoses, I am on 1 medicine for fibromyalgia, 1 for hbp, 1 for cholesterol, and occasionally 1 for sleep. I am no long taking narcotic pain medications and take an anti inflammatory as needed. It  did take me almost a year to finally find a fibromyalgia drug that I could take and get positive results.  I am currently on Savella.  It gives me the most relief for "fibro fog" we experience and the muscle twitches I have.  As far as the pain level I experience I have good days and bad.  I will tell you that the more active I am the better I feel.  It is just so hard sometimes to get motivated to exercise or even just get out out bed.

This illness has left me without a job now because of a surgery I had in June.  I missed so much work because of the inability to get a medication to finally work for me and the constant pain I was in everyday.