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 dise

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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.

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.

05/30/2025

The process of trying new medications to find one that works for fibro can be quite an ordeal. Pain physician Alan Spanos, M.D., offers the following advice: “I tell my patients that this is one area where you must kiss a lot of frogs before one turns into a prince. Many patients want to try several different medications for various symptoms: pain, fatigue, poor sleep, etc. Others quickly tire of the process. They want to stop and settle on something, even though there might be better drug out there that they haven’t yet tried. Some may want to go home with a frog rather than hold out for a prince who may never show up. We should respect patients’ choices on this.”

05/16/2025

What makes your skin burn and feel as though it’s on fire? Research shows your mast cells are dumping histamine and chemical irritants into your skin at two to three times the normal rate. And you aren’t imagining the burning pain because one type of opioid receptor is increased 60-fold. These receptors are proof that your skin hurts and it’s demanding pain relief. While dermatological treatments often fail to put out the fire, most patients reduce skin irritation by wearing soft clothes and removing all scratchy tags. You may not look fashion-forward but that’s not important.

04/18/2025

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’re at the pharmacy and they ask for your date of birth. You give it flawlessly, but then falter when they ask for your last name. The person behind you says, “You don’t know your own name?”
• Have resorted to naming everyone “Hey You.”
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!

04/04/2025

Lipid (fat) molecules help regulate inflammation by enlisting the aid of your immune system cells. A Swedish study reports reduced blood levels of four lipid classes in fibro patients compared to controls, and they were found to correspond to higher antibody levels. What does this mean?
• The antibodies were against cells thought to be involved in ramping up pain in fibro.
• Lower lipid levels were also linked to greater pain ratings in patients.
• The decreased lipid levels could mean your body is less able to suppress inflammation.
• Some of the lipids could be valuable markers and treatment targets for fibro.

03/21/2025

Fibro is so much more than pain, making is nearly impossible to manage. A physician in Spain evaluated 200 consecutive fibro patients and here is what she found:
• Visual acuity (changes in sight) - 63%
• Hearing abnormalities - 34%
• TMJ dysfunction (jaw) - 56%
• Sicca syndrome (severe dry eyes) - 67%
• Skin dryness - 82%
• Skin hyperemia (redness when pressed) - 90%
• Distended abdomen - 77%
• Impaired temperature sensation - 56%
• Impaired pinprick sensation - 59%
• Impaired tactile sensation - 76%
• Impaired pressure sensation - 100%
• Weakness - 35%
• Gait disturbances (balance issues) - 36%
All of the above are just the exploratory signs that are easily accessible to doctors (i.e., the list does not include fatigue, sleep disorder, fibrofog, stiffness, etc.). So, not only are your many symptoms tough to manage, a lot of them are NOT invisible.

03/14/2025

Feel like your hands don’t have the dexterity they did before developing fibro? A new research study looked at the speed and precision that fibro patients could tap their fingers on a table surface and compared the results to healthy people. They found the dominant hand of fibro patients performed as poorly as the non-dominant hand for the healthy folks. So, if you are embarrassed by clumsy hands at the dinner table, just tell everyone you are working with two left hands. They may not get your fibro, but they should understand this analogy.

03/07/2025

Anyone who begins each day with pain all over is rightfully convinced that something is wrong. But when a doctor can’t find anything and family members grow suspicious, it is difficult not to doubt yourself. How do you counter these situations:
• Try to recognize self-doubting or self-blaming thoughts as quickly as you can. We talk to ourselves all day long. When you ache everywhere and no one understands your need to rest, putting a halt to the negative chatter can take time and practice.
• Learn to talk to yourself with the same caring tone you would speak to a good friend.
• You didn’t cause your fibromyalgia, so don’t take the blame for it. You need to be comforted. You deserve it, especially from yourself.

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PO Box 32698
Tucson, AZ
85751

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+15207331570

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