American Fibromyalgia Syndrome Association

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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.

10/16/2026

You know fibrofog has struck when ...
• You forget to put coffee in the filter, so you brew a lovely pot of hot water.
• You put clothes in the washing machine—but forget to start it.
• The microwave beeps, and you start unloading the dishwasher instead.
• The pharmacy tech asks for your date of birth, and you give it flawlessly—but then your last name disappears from your brain.
• You find banana peels in your hamper, and you wonder, “What did I put in the trash?”
Fibrofog can derail your train of thought, hide the word you need, or make it vanish just as you are about to say it. These moments can be frustrating, but sometimes sharing a laugh with people who understand makes them a little easier to handle. What fibrofog moment made you laugh—or left you wondering what just happened?

09/18/2026

Doctors often tell their patients that the number one therapy for fibro is exercise. That’s because they are bombarded with medical reports indicating that structured exercise with a physical therapy (PT) coach leads to fibro symptom benefits. Yet, when your doctor hands you a script for PT/exercise, many of you do not benefit from it … and some of you even get worse. And a recent study highlights why your doctor’s expectations do not match your “real world” experience with exercise. Roughly 190 fibro patients were given a PT script for a 60-day program. At the end of the two-month experiment, the average symptom improvement was zero! Overall, half of the patients improved while the other half felt worse. And the range varied substantially … 30% in both directions. This goes to show that exercise is not the panacea that many in the medical community believe it to be.

09/04/2026

Where can I find a doctor who understands fibromyalgia and is willing to treat me? This is the number one request we receive from patients. Fibro affects about 3% of the population, so finding a knowledgeable doctor should not be this hard. Yet in a published survey of 9,000 physicians, only 38% of primary care doctors said they knew how to treat fibro. Rheumatologists should be among the most informed specialists because their field developed the guidelines for diagnosing and treating this disease. Rheumatology journals are also full of fibromyalgia research and treatment articles. But the same survey found that 90% of rheumatologists said they did not want to treat fibro patients, and many will refuse to see them. If you are struggling to find a doctor who is willing to take your symptoms seriously, please know this: you are not alone. Your frustration is not a personal failure. It reflects a medical system that too often dismisses or avoids people with fibro. Still, please do not give up. We also hear from patients who finally found a doctor who understands fibro after several failed attempts. A caring doctor may not always have a better treatment to offer, but being believed, respected, and treated with compassion can ease some of the frustration caused by a system that remains indifferent to the severity of your symptoms.

08/21/2026

While your neurons are sounding the pain alarms, they may not be acting alone in fibromyalgia. Immune cells in your brain are inflamed and pouring out chemical distress signals. Very likely, this leads to subtle signs of inflammation in tissues throughout the body where you hurt the most. And a new AFSA-funded study will use whole-body imaging to spot hidden inflammation that cannot be picked up by standard blood tests. The goal is to show that tissue inflammation outside the brain (areas where you hurt) is partially driving your fibromyalgia pain and related symptoms. This can lay the foundation for treating peripheral immune cells that are not tamed with standard NSAID therapies.

08/07/2026

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.

07/24/2026

Despite normal blood tests, when researchers transfer fibro blood or gut bacteria to mice, this causes fibro symptoms within 24 hours. It’s been shown by three 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. Instead, research shows that your immunoglobulins (IgG), neutrophils, and gut bacteria are playing an important role and there are ongoing studies to target these cells to develop more effective fibro treatments.

07/10/2026

Doctors often interpret your emotional numbness as a sign of depression, but many fibro patients correctly insist this is inaccurate. They want to participate in actives and enjoy life, but all the things that used to give them pleasure simply fail to nab their sense of excitement. That’s because brain dopamine is 30% reduced and the reward/motivation centers don’t work. Treatment guidelines for fibro ignore these research findings. As a result, you are handed a serotonin-raising antidepressant. It may help with the sadness, but a dopamine booster might be needed to reduce your emotional emptiness.

06/26/2026

If you have gained weight since the onset of fibro, it’s likely due to your immune system. A study by Bjorn Gerdle, M.D., Ph.D., shows that fibro patients have excessive amounts of fat deposits in their muscles. The deposits are an oddity that shouldn’t be there and were found to interfere with muscle function. Worse yet, the fat cells are producing inflammatory chemicals that build up in the bloodstream. Gerdle did full body scans, along with measuring immune substances in the muscles and blood. He found that the increased fat deposits were completely independent of body mass index (i.e., it is not because you eat too much or don’t exercise enough). Gerdle concludes: “Fibromyalgia is clearly associated with the presence of systemic low-grade inflammation.” The upcoming holiday can be brutal on the waistline, and having fibro makes matters worse!

06/19/2026

Trying to explain fibro to others can leave you tongue-tied. What do you say when you look normal? You can’t point to something anatomically that is broken or a definitive marker that says, “Yes, you have fibro.” The irony is that fibro messes with all your body’s control settings so that nothing works. So much goes wrong but it’s hard to convey. One patient describes fibro as feeling bruised all over, as though you’ve been put through the spin cycle of a dryer. And when it comes to the horrendous fatigue, it feels like you have an elephant sitting on you and you can’t get up.

05/29/2026

Fibro patients have a fourfold increase in several of the body’s key pain transmitting substances in the spinal fluid. Even glutamate is twice that of normal, while chemicals that relieve pain are low (such as serotonin, norepinephrine and dopamine). Given this chemical imbalance, it’s a guarantee that you will be in tremendous pain. Yet, many doctors still doubt the veracity of our symptoms because spinal fluid levels are never tested due to the potential for complications. Unfortunately, this places your severe chemical imbalances out of sight and out of mind when you walk into the doctor’s office.

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PO Box 32698
Tucson, AZ
85751

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+15207331570

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