American Fibromyalgia Syndrome Association

American Fibromyalgia Syndrome Association We are a 501(c)3 Nonprofit Charitable Organization. All information is free and devoid of ads as well as third-party endorsement.

AFSA is an all volunteer nonprofit organization dedicated to funding superior quality biomedical research on fibromyalgia and empowering patients through education about this life-impacting disease. About AFSA
The American Fibromyalgia Syndrome Association (AFSA) has two missions:
• fund superior quality biomedical research on fibromyalgia
• educate patients about this serious, life-impacting disease

We are an all-volunteer 501(c)3 charity that was formed in 1994. Although we were partially on hold for a while, we recently expanded our website to be a patient-education resource. Articles are based on scientific journal publications and interviews with the experts. This page is to provide you with short briefs about fibromyalgia research, coping and lifestyle suggestions, and sometimes humorous comments. We understand that it is frustrating to live with an invisible and unpredictable disease, and want to encourage a supportive community for everyone. As for the spammers and insensitive people who do not understand the struggles of living life with fibro, we apologize in advance! Funding Research
AFSA is the nation’s only nonprofit organization dedicated to funding research that accelerates the pace of medical discoveries on fibromyalgia. We don’t just say we support research; we have been funding high-quality studies on this disease since 1995. In November of 2023, we solicited research applications from over 50 teams around the world, and this summer we hope to fund several new projects. AFSA’s research grant program is essential for accelerating discoveries on fibromyalgia. It offers scientists an opportunity to initiate studies that are most relevant to you, such as looking at biomarkers, effective treatments, and uncovering why you have so many symptoms. We do not fund psychosocial, behavioral, or exercise studies because these “blame it on the patient” theories are a waste of money. Educating Patients
A variety of treatments and self-help measures can reduce the symptoms of fibromyalgia, although you may find the efficacy of many therapies disappointing. Learning about each approach, including its pros and cons, places you in the driver’s seat to open a dialog with your healthcare team. Some therapies are expensive, while the scientific evidence supporting others is flimsy. The point is, you deserve to know what the medical literature says about the various treatment options for fibromyalgia. Part of the battle of living with fibromyalgia is that it produces so many symptoms. Reading about research studies that help explain the symptoms can be both validating and relieving to patients. The same holds true for reading about the possible causes of fibromyalgia, especially when it is based on published research studies and interviews with the lead investigators. Spammers and Bogus Cures
There is no cure for fibromyalgia and anyone posting claims that they have found a cure (or they refer you to someone who can cure you), is likely a bot who is spamming this site. We know it’s insulting to read these bogus claims because all they are trying to do is sell you false hope. We block them from the site each day, but they keep coming back with their computer auto-generated claims of microdosing, shrooms, and spores. Until we can find a better solution, we hope you will ignore them.

11/07/2025

More than 90% of fibro patients report stiffness, especially first thing in the morning. It can feel like your limbs are swollen or have firmed up like Jello. Doctors view this symptom as a sign of joint inflammation unrelated to fibro, or a problem of advanced aging. However, it doesn’t explain why fibro patients who are 25-45 years old have twice as much stiffness as healthy age-matched controls. Research shows damage to the small nerve fibers in the skin in fibro and it’s possible that these fibers in other tissues (muscles and fascia) might also be affected. Just know that this stiffness is not due to arthritis or aging.

10/24/2025

Fibro research shows many difficulties with exercise, such as reduced muscle oxygenation and blood flow, and a heart rate that does not accelerate adequately to keep up with your body’s physiological demands. But there is more. Your brain’s pain control system doesn’t work as well as healthy people (even those who never exercise). So, the promotion of exercise for a disease that alters multiple systems throughout the body speaks volumes about the poor efficacy of other available treatments. However, staying active with mild movements will help keep you functional, although it is hard to gauge when you have overdone it. Try making use of warm water/heat wraps. Heat relaxes your blood vessels and enhances muscle oxygenation. Also, you have heat sensors in your tissues to relieve pain.

10/03/2025

You know you have fibro when ...
• You forgot to put coffee in the filter, so you brew a lovely pot of hot water.
• The microwave beeps and you look in the freezer.
• You are put on hold for a long time and when someone replies you forget why you were calling.
• You ask your son if his brother is out of the dishwasher yet! (You meant to say shower.)
• You paid for gas and then drove off without filling up your car.
Fibro messes with your thought processes and interferes with your ability to choose the right words. And even if you know what you want to say, it doesn't always come out that way!

09/19/2025

The immune cells in your brain (microglia) are in an activated state, causing neuroinflammation. Yet the reason for the chronically spooked microglia is unclear. Several findings in fibro suggest that immune-reactive cytokines are seeping through a leaky blood-brain barrier (BBB). And AFSA just funded a new project to show that the barrier is more porous in fibro patients. In addition, the study will determine if specific cytokines are associated with a leaky BBB, with the goal of identifying new treatment targets for fibro. Of course, documenting a leaky BBB will also elevate the severity and legitimacy of the disease. Maybe then doctors will take us seriously! This is AFSA’s sixth project funded since June of 2024.

09/05/2025

Two brain imaging studies using a dopamine tracer show this transmitter is reduced by 30% throughout the brain in fibro patients. And the lower dopamine levels, the lower the pain thresholds (greater pain). But this transmitter isn’t just important for controlling pain, it also plays a role in cognition, motivation, and pleasure (euphoria). This contributes to other symptoms like fibrofog and feeling spent before the day is done. While dopamine boosting drugs are an option, they are heavily regulated and can undermine sleep. Another method is to stimulate both dopamine- and serotonin-transmitting brain circuits to relieve your symptoms. AFSA just funded a study to document this nondrug treatment approach. It’s our fifth project funded since June of 2024.

08/15/2025

The FDA approved a new drug today for treating fibromyalgia called Tonmya. It’s a special sublingual formulation of cyclobenzaprine. Although it was designed to target the sleep disturbance in fibro, the clinical trials showed improvements in pain and fatigue as well. Due to the low dose, it may have less side effects than most oral pills but only time will tell. The manufacturer says it will be available for prescription sale in 3-4 months.

08/15/2025

Brain centers need to operate in a coordinated fashion to be efficient. In fibro, pain processing regions are chronically overwhelmed. This leads to a domino effect throughout your brain and down into your spinal cord. Brain imaging studies reveal the detrimental impact of gray matter loss in some regions and an increase in other areas. It’s no surprise that fibro patients experience a multitude of symptoms related to brain malfunctions, such as inability to sleep, think clearly, control pain, coordinate movements, and exercise with ease. Drugs that diminish the pain signals often produce too many side effects because they blanketly change the chemistry of your entire brain … not just the centers that need fixing.

08/08/2025

Fibro patients struggle to find doctors to treat them, and a survey of physician attitudes explains why. Close to 90% of rheumatologists say they don’t want to treat your disease and insist that primary care doctors oversee your health. However, only 35% of primary care doctors indicate they know how to diagnose, let alone treat fibro. Asking physicians-in-training if they should tend to your needs, 42% say this responsibility belongs to the rheumatologists. Quite often we are portrayed as doctor-shoppers, but it’s the doctors who toss us around like a human volleyball.

07/18/2025

Transferring fibro blood or gut bacteria to mice causes symptoms of fibro within 24 hours. It’s been shown by three research teams, and it doesn’t happen with blood or gut products from healthy people. So, what’s going on? Examining the mice in all three studies reveals that the cell bodies of neurons at the entrance to the spinal cord are under attack. This can ramp up the signals and overwhelm the brain. It’s proof that fibro has a physiological basis … one that exercise and psychotherapy can’t fix. Yet, proponents of these two treatments refuse to accept these transfer studies because it proves they have been wrong about us all along!

07/11/2025

If you feel unsteady on our feet, research shows fibro patients are six times more likely to fall than healthy people. Dexterity and fine motor skills are also impaired. While walking and reaching for objects should be simple movements, they require your brain to integrate sensory, visual, and vestibular information. However, your brain is preoccupied with processing pain inputs and your spinal cord neurons that help coordinate movement are also overwhelmed. Consequently, you bump into walls and you walk very slowly. As for your clumsy hands at the dinner table, a fibro study shows you are working with two left hands. Others may not get your fibro, but they should understand your two left hands analogy.

06/27/2025

When you hurt all over, it's impossible to project all smiles and optimism. Yet, the people around you (those you love and care about) just see your “exterior” – they can’t see your symptoms. You don’t want them to misjudge you as being moody or grumpy, because they may choose to keep their distance even when you want their company. Here are suggestions for keeping the people in your life close to you:
• Let them know you are irritated with your pain, not them
• Set aside a time each day to do something that makes you happy (watching a funny show, listening to music, etc.) — this will help buffer your frustrations
• Push back on negative thoughts (easier said than done) because they will drag you down into the dumps
Living with fibro is a juggling act, and hopefully you have at least one person in your life who understands what you are going through.

06/20/2025

It’s hard to concentrate when you are in lots of pain, but research shows there is more to your memory and attention deficits (i.e., fibrofog). Wolmei Caumo, M.D., Ph.D, of Brazil found a connection between cognitive decline and greater dysfunction of your pain control system. Here is how he explains it: “Pain is an attention-demanding condition that lowers the brain resources available for cognition.” So, not matter how hard you try to think, your brain may be running on empty. This could make simple tasks like word finding very difficult when pain levels are high.

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