Find Fibromyalgia Specialists near you

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FAQs:

What are Fibromyalgia Support Groups?

Fibromyalgia support groups are available to help people with fibromyalgia meet and connect with others in similar situations, or with doctors and other healthcare providers specializing in fibromyalgia care. As one of the challenges of living with fibromyalgia can be a feeling of isolation, fibromyalgia support groups can be particularly helpful in connecting with others who are going through a similar journey.

What is Fibromyalgia?

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals.

Symptoms often begin after an event, such as physical trauma, surgery, infection, or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

Women are more likely to develop fibromyalgia than men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety, and depression.

While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation, and stress-reduction measures also may help.

What are the First Signs of Fibromyalgia?

The prime symptom of fibromyalgia is tenderness and pain in the body’s joints and muscles. Such pain can move from place to place, however, to qualify for a diagnosis, you must have experienced this pain for a minimum of three months.

What Does a Fibromyalgia Attack Feel Like?

While fibromyalgia is a constant, dull pain, it can also involve sudden attacks known as flare-ups. Flare-ups of mild to severe pain come on suddenly and may feel aching, throbbing, burning, or stabbing. The pain may be present in multiple tender points throughout the body, often affecting the lower back and legs.

Fibromyalgia attacks can happen to anyone with the condition, but they are most common in women between ages 0-65. Flare-ups are often caused by stressful events, such as an accident, surgery, overexercising, lack of sleep, or the death of a loved one. Although fibromyalgia flare-ups can feel like inflammation in the joints, muscles, and other tissues, the condition does not cause inflammation.

What are Fibromyalgia Symptoms?

The two most common symptoms of fibromyalgia are pain and fatigue. You may experience:

- Muscle pain or tenderness.

- Fatigue.

- Face and jaw pain (temporomandibular joint disorders).

- Headaches and migraines.

- Digestive problems, including diarrhea and constipation.

- Bladder control issues.

Fibromyalgia can cause mental and emotional symptoms, including:

- Memory problems (sometimes called “fibro fog” or “brain fog”).

- Anxiety.

- Depression.

- Insomnia and other sleep disorders.

What are the Causes of Fibromyalgia?

No one knows what causes fibromyalgia. It’s thought that it may be the result of genetic (inherited) and environmental factors (such as exposure to a virus or illness).

It’s also believed that physical or emotional stress can trigger the start of fibromyalgia symptoms. However, fibromyalgia may also appear without any obvious cause.

Fibromyalgia is more common in people with:

- lupus or rheumatoid arthritis

- an illness such as a virus (or a recent illness or infection)

- pain from an injury or trauma

- emotional stress and depression

- family history of fibromyalgia

- previous pain syndromes

- mood disorders

- substance abuse.

There is no cure for fibromyalgia, but treatment can help you manage your symptoms.

What are the Risk Factors for Fibromyalgia?

Even though experts can’t say for sure what causes fibromyalgia, some health conditions and other issues are risk factors for developing it. Fibromyalgia risk factors include:

1. Your age: People older than 40 are more likely to develop fibromyalgia. But it can affect anyone, including children.

2. Your sex assigned at birth: People assigned female at birth are twice as likely to experience fibromyalgia.

3. Chronic illnesses: People with conditions like osteoarthritis, depression, anxiety disorders, chronic back pain, and irritable bowel syndrome are more likely to develop fibromyalgia.

Infections: Some people develop fibromyalgia after having an infection, especially if they experience severe symptoms.

4. Stress: The amount of stress you experience can’t be measured on a test, but too much stress can affect your health.

5. Traumas: People who’ve experienced physical or emotional trauma or a serious injury sometimes develop fibromyalgia.

What are the Complications of Fibromyalgia?

Fibromyalgia can cause pain, disability, and a lower quality of life. US adults with fibromyalgia may have complications such as:

1. More hospitalizations. If you have fibromyalgia you are twice as likely to be hospitalized as someone without fibromyalgia.

2. Lower quality of life. Women with fibromyalgia may experience a lower quality of life

3. Higher rates of major depression. Adults with fibromyalgia are more than 3 times more likely to have major depression than adults without fibromyalgia. Screening and treating depression are extremely important.

4. Higher death rates from suicide and injuries. Death rates from suicide and injuries are higher among fibromyalgia patients. However, overall mortality among adults with fibromyalgia is similar to the general population.

5. Higher rates of other rheumatic conditions. Fibromyalgia often co-occurs with other types of arthritis such as osteoarthritis, rheumatoid arthritis, systemic lupus erythematosus, and ankylosing spondylitis.

What is the Life Expectancy with Fibromyalgia?

Fibromyalgia isn't life-threatening, but one study suggested that it may come with a greater risk of earlier death from other causes, such as accidents, infections, or suicide. It's a good idea to see your doctor regularly to check on your overall health and to get help with any mental health problems you may have in addition to your fibromyalgia.

Is Fibromyalgia an Autoimmune Disease?

Some believe fibromyalgia could be classified as an autoimmune disease because many of the symptoms overlap with those of autoimmune disorders. However, without sufficient evidence showing that fibromyalgia produces autoantibodies or causes harm to surrounding tissues, it’s difficult to prove this claim.

What Happens if Fibromyalgia is Left Untreated?

If you avoid treating fibromyalgia, you may descend into a spiral. The chronic pain and fatigue limit your physical activities and exercise. That, in turn, weakens your body. You may begin to feel isolated, fearful, suspicious, lonely, and afraid, which can strain relationships.

As time goes on and your symptoms continue, you may have trouble keeping your job. Doing so can be especially difficult if you have many absences or errors because of your symptoms such as fatigue, concentration problems, and pain. If your income is lost, you will have more stress. The longer your chronic pain and other symptoms continue without relief, the more likely you will be to experience stress-related symptoms.

Four Stages of Fibromyalgia

Fibromyalgia is a dynamic condition. This means you won’t experience symptoms in any specific order — there’s no roadmap to know when or how fibromyalgia symptoms will affect you.

Your provider might treat your fibromyalgia in stages based on how you feel. These stages aren’t a step-by-step treatment plan. Every person is different, and how fibromyalgia affects your body will be unique. The stages are more like loose categories that can help you understand which treatments you’ll need to manage your symptoms. The four stages of treating fibromyalgia include:

1. Non-pharmacological treatments: Your provider or a physical therapist will give you stretches and exercises to loosen, relax, and strengthen your muscles and joints.

2. Psychological treatments: A mental health professional will help you identify ways to maintain a healthy self-image. They’ll suggest strategies to manage symptoms that affect your mental and emotional health.

3. Pharmacological treatment: Taking medicine to manage your symptoms.

4. Daily functioning: An occupational therapist can help you navigate your daily routine if you’re experiencing severe symptoms that make it hard to participate in your regular activities.

18 Tender Points of Fibromyalgia

Fibromyalgia tender points tend to be symmetrical in the body. They are located both above and below the waist around the neck, chest, shoulders, hips, and knees. The tender point should cause pain in that exact area when the doctor presses on it with enough force to turn the fingernail white. It should be painful in the exact spot that is being pressed. The 18 tender points for fibromyalgia include:

1. Lower neck in front

2. Edge of upper breast

3. Arm near the elbow

4. Knee

5. Base of the skull in the back of the head

6. Hip bone

7. Upper outer buttock

8. Back of the neck

9. Back of the shoulders

Types of Fibromyalgia Support Groups

Fibromyalgia support groups come in all sizes, shapes, and varieties. You can find support groups for:

1. People with fibromyalgia

2. Friends of family of people with fibromyalgia

3. Employers who want to better understand their employees who have fibromyalgia

Support groups may cater to certain ages, genders, or value systems. Some may emphasize sharing medical research and tips and tricks for fibromyalgia. Others may focus on encouragement and emotional support. Some may prioritize social engagement and get together for games, exercise, or outings.

Benefits of Fibromyalgia Support Group

An active support group community can provide significant benefits. These benefits may include:

1. Recent research into new drugs, treatments, or therapies for fibromyalgia.

2. New or tried-and-true ways to manage symptoms.

3. Information about doctors and other healthcare professionals in your area who specialize in fibromyalgia.

4. The courage that comes with knowing you are not alone.

5. Meeting and interacting with others who can relate to your struggles and challenges.

6. Mental and emotional support and encouragement.

7. Hope for the future and a better outlook on life in general and fibromyalgia in particular.

How to Support Someone with Fibromyalgia

Fibromyalgia is an invisible illness and can be hard for friends and family to understand, especially with the lack of understanding in the area. There are many things that someone can do to support a family or friend suffering with Fibromyalgia:

1. Educate Yourself

Learn about the condition and the symptoms that your family member or friend must deal with daily. This will help you to understand them better. Although the awareness of Fibromyalgia is increasing, it is still poorly understood. If you can be more aware of what symptoms they experience, it will enable you to be more sympathetic.

2. Help them find a daily routine

Try to help them find a daily routine that they can manage well, and regularly. This allows them to keep active and complete their activities without overdoing things and causing flare-ups. The key to Fibromyalgia is knowing your boundaries and working within them. 

3. Support them to keep up with daily activities

People with Fibromyalgia need to keep active and keep moving. Like back pain, gentle, correct movement is better than no movement. So, activity is good. 

4. Remind them it’s ok to stop if they don’t feel up to something

Equally, if they don’t feel well, are in pain, or are having a flare-up of symptoms, it is ok for them to rest and listen to their body. Friends and family can support them by not judging when they are not feeling up to taking part in social occasions or activities. Symptoms with Fibro can come and go and they can be hard to predict.

5. Provide them with emotional support

Fibro can be emotionally difficult for sufferers; it can have an impact on mental health as well as physical health. You can play an important part here and be there to support your friend or family member for emotional backup and a person to listen to their worries and concerns.  It is also important to try and stay mentally positive. So, the more positive support you can provide, the better.

6. Encourage them to seek advice from professionals to improve their condition

It’s possible to lead a good life with Fibromyalgia, with good support from health professionals, symptoms can be treated and managed well and a positive approach to the condition maintained.  It is really useful if you encourage your friend/family member to seek advice from a Fibromyalgia specialist to start a treatment plan.

6 Things to Say to Someone with Fibromyalgia

Finding out a friend, family member or co-worker has fibromyalgia is complicated, however, despite our best intentions, we can often accidentally say something that may be offensive or hurtful. What the person wants to hear is that you’re there for them and thinking of them. With that in mind, we’ve compiled a list of things you should say to a person who has been diagnosed with fibromyalgia:

1. “I’ll do that for you!”

The “that” could be anything that you know the person would find helpful, from fetching groceries to giving them a ride to the hospital to cooking them dinner. Actions speak louder than words and even just one act of kindness can help them out immensely, especially if they’re feeling ill following a treatment session.

2. “What are you thinking about today?”

It can be difficult to judge what’s going through the mind of someone who’s living with fibromyalgia. They’ll have good days and bad days, so some days you can be their cheerleader and on others their shoulder to cry on. Asking them what they’re thinking about opens the lines of communication, and could spark a conversation about upcoming treatment, how tired they are, or maybe nothing to do with their illness if they want to get their mind off the subject.

3. “What don’t you want to talk about?”

Your friend or loved one may be completely open about all aspects of their illness, or there could be some areas that they don’t want to talk about. Respect this by asking what’s off-limits. This way you’ll know that you’re not overstepping.

4. “Thinking about you!”

This can either be said verbally or via a text message, email, or Facebook message. It’s short and simple and lets the person know that you’re thinking about them and are in their corner without probing them for information.

5. “So this happened to me.”

It’s OK to talk about yourself and share good news about your life with your friend or loved one, so if you got that promotion, your kid did well at school or you just bought a new car — tell them. Firstly, they’ll want to hear about your success and secondly, it’ll probably be a welcome reprieve from all the fibromyalgia talk. You can also share the bad things as well because they care about you as well.

6. Say nothing at all.

Sometimes words are not needed, particularly if you don’t know what to say. It’s better to give a hug, squeeze someone’s hand, or simply listen.

Top 10 Things NOT to Say to a Fibromyalgia Patient

Fibromyalgia awareness has come a long way. But that doesn’t stop people from making insensitive comments. There’s still a lot of misinformation and misunderstanding about this painful illness. Following are 10 examples of things not to say to a fibromyalgia patient.

1. We all get more aches and pains as we get older

The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things (like a handshake or a hug) that shouldn't hurt at all can be excruciatingly painful. Plus, most people develop fibromyalgia long before they should be experiencing age-related aches and pains.

2. I think I have that, too — I'm always tired

The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are drained of energy — like someone pulled your plug, cutting off your source of power. It’s kind of like taking the batteries out of the Energizer bunny.

3. Maybe you need a job to take your mind off the pain

While getting involved in a project can help to distract your mind from the pain for short periods, if you have a more severe case, it doesn't work well enough to allow you to consistently work a 40-hour week. And it doesn't help dispel the extreme fatigue that usually accompanies fibromyalgia.

4. My doctor says fibromyalgia isn't a real disease

First of all, this doctor hasn't kept up with the latest research, which demonstrates that fibromyalgia is a very real physical disease. Also, to date, the FDA has approved three medications to treat fibromyalgia, and they generally don't approve medications for imaginary illnesses.

5. If you got more sleep, you'd feel better

While getting more and better-quality sleep would undoubtedly help, one of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when it naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you're still most likely not going to awaken feeling refreshed.

6. I read about this new product that cures fibromyalgia

This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. Although to date there is no cure for fibromyalgia, there are natural options that may indeed help to improve one or more symptoms. However, trying every product suggested would be extremely expensive. Read “Let the Buyer Beware” for tips to help you evaluate product claims.

7. At least it's not fatal

Of course, you're glad it's not fatal. But Instead of being comforting, being reminded that it's not fatal can feel more like being sentenced to a lifetime of pain. It's also much more difficult to raise research funding and garner support for someone living with a chronic but non-fatal disease. Understandably, people tend to be more interested in preventing death than in improving the quality of life.

8. You just need to exercise more

Although exercise is an important component of any comprehensive fibromyalgia treatment plan, it's only one part, and it must be approached slowly and carefully to avoid triggering a flare. Read “Fibromyalgia and Exercise” for more information on how to safely incorporate exercise into your fibromyalgia treatment plan.

9. But you don't look sick

When it comes to outward appearance, a person with fibromyalgia can't win for losing. If you let yourself go and show how you feel, people become uncomfortable and don't want to be around you. On the other hand, if you manage to fix yourself up and put on a brave face, people don't believe you're sick because you look so “normal.”

10. It's all in your head

Insinuating that fibromyalgia is merely a psychological problem may be one of the most hurtful things that can be said. However, instead of being defensive and launching into an explanation of how fibromyalgia is a very real physical illness, try simply saying: “You're right, it is in my head”. Research shows that inflammation and abnormal blood flow in my brain affect how it processes pain signals.

How to Treat Fibromyalgia

In general, treatments for fibromyalgia include both medication and self-care strategies. The emphasis is on minimizing symptoms and improving general health. No one treatment works for all symptoms, but trying a variety of treatment strategies can have a cumulative effect.

1. Medications

Medications can help reduce the pain of fibromyalgia and improve sleep. Common choices include:

- Pain relievers. Over-the-counter pain relievers such as acetaminophen (Tylenol, others), ibuprofen (Advil, Motrin IB, others), or naproxen sodium (Aleve, others) may be helpful. Opioid medications are not recommended, because they can lead to significant side effects and dependence and will worsen the pain over time.

- Antidepressants. Duloxetine (Cymbalta) and milnacipran (Savella) may help ease the pain and fatigue associated with fibromyalgia. Your doctor may prescribe amitriptyline or the muscle relaxant cyclobenzaprine to help promote sleep.

- Anti-seizure drugs. Medications designed to treat epilepsy are often useful in reducing certain types of pain. Gabapentin (Neurontin) is sometimes helpful in reducing fibromyalgia symptoms, while pregabalin (Lyrica) was the first drug approved by the Food and Drug Administration to treat fibromyalgia.

2. Therapies

A variety of different therapies can help reduce the effect that fibromyalgia has on your body and your life. Examples include:

- Physical therapy. A physical therapist can teach you exercises that will improve your strength, flexibility, and stamina. Water-based exercises might be particularly helpful.

- Occupational therapy. An occupational therapist can help you make adjustments to your work area or the way you perform certain tasks that will cause less stress on your body.

- Counseling. Talking with a counselor can help strengthen your belief in your abilities and teach you strategies for dealing with stressful situations.

3. Self care

Self-care is critical in the management of fibromyalgia.

- Stress management. Develop a plan to avoid or limit overexertion and emotional stress. Allow yourself time each day to relax. That may mean learning how to say no without guilt. But try not to change your routine completely. People who quit work or drop all activity tend to do worse than do those who remain active. Try stress management techniques, such as deep-breathing exercises or meditation.

- Sleep hygiene. Because fatigue is one of the main components of fibromyalgia, getting good quality sleep is essential. In addition to allotting enough time for sleep, practice good sleep habits, such as going to bed and getting up at the same time each day and limiting daytime napping.

- Exercise regularly. At first, exercise may increase your pain. But doing it gradually and regularly often decreases symptoms. Appropriate exercises may include walking, swimming, biking, and water aerobics. A physical therapist can help you develop a home exercise program. Stretching, good posture, and relaxation exercises also are helpful.

- Pace yourself. Keep your activity on an even level. If you do too much on your good days, you may have more bad days. Moderation means not overdoing it on your good days, but likewise, it means not self-limiting or doing too little on the days when symptoms flare.

- Maintain a healthy lifestyle. Eat healthy foods. Do not use tobacco products. Limit your caffeine intake. Do something that you find enjoyable and fulfilling every day.

4. Alternative medicine

Complementary and alternative therapies for pain and stress management aren't new. Some, such as meditation and yoga, have been practiced for thousands of years. But their use has become more popular in recent years, especially with people who have chronic illnesses, such as fibromyalgia. Several of these treatments do appear to safely relieve stress and reduce pain, and some are gaining acceptance in mainstream medicine. But many practices remain unproved because they haven't been adequately studied.

- Acupuncture. Acupuncture is a Chinese medical system based on restoring the normal balance of life forces by inserting very fine needles through the skin to various depths. According to Western theories of acupuncture, the needles cause changes in blood flow and levels of neurotransmitters in the brain and spinal cord. Some studies indicate that acupuncture helps relieve fibromyalgia symptoms, while others show no benefit.

- Massage therapy. This is one of the oldest methods of health care still in practice. It involves the use of different manipulative techniques to move your body's muscles and soft tissues. Massage can reduce your heart rate, relax your muscles, improve the range of motion in your joints, and increase the production of your body's natural painkillers. It often helps relieve stress and anxiety.

- Yoga and tai chi. These practices combine meditation, slow movements, deep breathing, and relaxation. Both help control fibromyalgia symptoms.

What to Expect from Fibro Support Groups

All groups are different, and depending on the support group, you will find various goals, activities, and types of discussions. Support groups may involve:

- Field trips 

- Guest speakers

- Exercise sessions

- Personal discussions

- Information exchanges 

- Specific topic discussions

Tips for Finding a Fibro Support Group

To find a fibro support group that best suits you, here are the key tips from experts:

1. Don’t restrict yourself to meeting virtually. While Facebook groups can be a good way to make initial connections, experts say it’s important to proceed with caution online.

2. Look for support groups geared to you. While fibromyalgia is most common in women, experts note that men, adolescents, and children are increasingly being diagnosed with the condition. Accordingly, options are beginning to better reflect the diversity of the population with fibromyalgia.

3. Nothing in your area? Start your fibro support group. In small towns and rural areas, access to treatment – let alone support – can be a challenge. That’s where online support can be particularly helpful. But hosting a small in-person support group is another option if there isn’t already one near you. You could meet monthly, quarterly or whenever works best – and define other parameters to keep it manageable. Of course, given how draining fibromyalgia can be, you’ll want to make sure whatever you do prioritizes your health and is good for your overall well-being.

4. Resist the urge to avoid community – even if you’ve had a bad experience. Maybe you joined a support group for one meeting – or a few – and it was overly negative or left you feeling worse. When searching for a support group, it can help if the leader has received training in running a support group. Pay attention also to the group dynamic and the tone set by the leader, while allowing for the normal ups and downs that come with being real about a chronic condition.

5. Make it a learning experience. The warm-and-fuzzy reputation of support groups admittedly turns some people off. But in addition to emotional support – which experts roundly say is important for anyone dealing with a chronic illness – support groups are a place to compare notes and find pragmatic solutions to everyday problems.

Where to Find Fibromyalgia Support Groups Near Me

You can search online for fibromyalgia support groups in your area, or look for online fibromyalgia support groups through search engines or on your favorite social media sites. Research these groups and look at reviews or ratings, if you can find them, before joining. 

If possible, talk to group members to get a feel for the group. Find out what typical meetings entail, or how the online group operates, to see if it’s what you're looking for.

1. Community Support Groups

You can find fibromyalgia support groups throughout the United States and worldwide. Support groups sometimes meet in community centers, churches, hospitals, private houses, and more. 

If you live in the United States, the National Fibromyalgia Association has information about support groups in the United States and provides links to them.

2. Online Support Groups        

If you don’t have access to an in-person support group in your community, have mobility issues, or prefer interacting with people online, you can try online support groups. These groups “meet” in different online formats and may plan events to meet in person on occasion.

3. Forums or Message Boards

You can also try forums or message boards. Forums are online discussion sites where you can post messages and questions, and read and respond to other peoples’ posts.

4. Online Chatrooms

You may find some online chatrooms for people with fibromyalgia. Chat rooms differ from forums or message boards in that you’re typically talking to someone in real time. Again, make sure you run any advice you receive on these forums or chatrooms by your doctor before making any changes.

5. Fibromyalgia Communities

You may prefer fibromyalgia communities on social media platforms or other online networks. Again, be discerning when joining social media or social networking sites. Make sure professionals moderate them and they support evidence-based research and treatments.

6. In-person or Online Interactions

If you prefer talking on the phone to in-person or online interactions, phone lines are available to call and speak to a real person. The National Fibromyalgia Association lists several phone numbers you can call to talk to someone and get emotional assistance with what you are going through. Whether you prefer in-person, online, or phone support, support groups are a great way to find people around you with fibromyalgia who can relate to your daily needs, goals, and challenges.=

How to Find the Right Fibromyalgia Specialist Near You

It's not uncommon for people with fibromyalgia to encounter specialists who don't understand fibromyalgia, don't know how to diagnose and treat it, or simply don't believe it's a real condition. This may lead to delays in diagnosis and needless suffering. The right specialist, on the other hand, will be empathetic and will be able to help you manage your fibromyalgia symptoms and resume your normal activities. However, finding the right fibromyalgia specialist can be a challenge. These tips on finding the right one may help:

1. Network with others who have fibromyalgia. Support groups provide a natural starting point. The National Fibromyalgia Association website at www.fmaware.org lists support groups in each state that can help you find these initial connections. The organization can also provide a list of "fibro-friendly" doctors in your state.

2. Seek advice from your primary care physician. Many doctors will be able to recommend a specialist who can help you manage your fibromyalgia condition.

3. Call the offices of doctors you're considering adding to your team. Ask the office staff whether the doctor frequently sees patients with fibromyalgia and treats them on an ongoing basis. Also ask what treatments the doctor typically prescribes.

4. Don't be afraid to walk away. If your doctor doesn't understand fibromyalgia, is insensitive, dismisses your symptoms, or is not willing to coordinate care with your other doctors, it may be best to find someone else.

Sources:

Swing Care

Mayo Clinic

London Pain Clinic

Fibromyalgia News Today

Health Central

National Fibromyalgia Association

Health US News

CDC

Cleveland Clinic

Better Health

WebMD

London Pain Clinic

Creaky Joints

Healthline

AFC Urgent Care

Harvard Health