Contents:
What is fibromyalgia?
What is the connection between fibromyalgia and lupus?
Who gets fibromyalgia?
What causes fibromyalgia?
Symptoms of fibromyalgia
What kind of doctor should I see for fibromyalgia?
How is it diagnosed?
Treatment Options
Living with Fibro, an Invisible Illness
What is Fibromyalgia?
Fibromyalgia syndrome (also known as FMS or ‘fibro’) is a disorder that affects the muscles and soft tissues of the body. It is believed that fibromyalgia intensifies painful sensations by affecting the way that the brain processes pain signals. The word “fibromyalgia” comes from the Latin term for fibrous tissue (fibro) and the Greek ones for muscle (myo) and pain (algia).
Fibromyalgia is considered a rheumatic or arthritic condition (although not considered to be a form of rheumatoid arthritis because it does not cause inflammation or damage to the joints, muscles, or other tissues, but can cause significant pain and fatigue and interfere with a person’s ability to carry out daily activities). It is often characterized by widespread and chronic muscle pain and stiffness, extreme fatigue, problems with sleep, painful or tender spots on the body, to name just a few of the troubling symptoms.
The symptoms of FMS can be very difficult to live with. Seeking medical advice on lifestyle changes, medication and stress management can all play a role in helping to manage the severity of symptoms.
In this blog, we will dive deeper into FMS symptoms, causes, treatment, finding a physician and much more.
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What is the connection between fibromyalgia and lupus?
Infographic courtesy of Skylar Jameyson
It is estimated that approximately 5% of American adults have fibromyalgia. Like the chronic autoimmune disease lupus, fibromyalgia is very difficult to diagnose correctly. Each year, due to the similarity in the symptoms for both diseases, thousands of those who suffer with FMS are actually diagnosed with lupus. Conversely, many patients are diagnosed with fibro years before lupus is accurately diagnosed. Fibromyalgia is a very common overlap disease with lupus, meaning that patients do, in fact, have both fibro and lupus or other rheumatologic conditions (such as rheumatoid arthritis) simultaneously.
As mentioned, lupus and FMS present with similar symptoms making differentiating the two all the more tricky. Some of the main symptoms that they have in common are:
Morning muscle and joint stiffness
Fatigue
Muscle pain
Cognitive difficulties otherwise known as [brain fog]
Symptoms that seem to [flare] and go into periods of remissions with little or no disease activity.
Diagnostic tools do exist to distinguish between fibro and [lupus]. It is very important to find a physician that understands and recognizes the different symptoms of each of these diseases as well as the knowledge of the tools available to ensure that you are diagnosed and treated appropriately.
If you suspect that you may suffer from any of the above-mentioned conditions, please advocate for yourself and ask questions until you are satisfied with the answer. You know your body better than anyone and although you may find resistance to getting a diagnosis that you believe is valid, don’t give up. Seek second opinions when possible as well. Back to top
Who gets Fibromyalgia?
Here are several factors that can put you more at risk for developing fibromyalgia:
Your gender: As in lupus, women are 80-90% more likely to develop fibromyalgia than are men, however, men and children also can be affected.
Genetics or Heredity: If you have a family history of fibromyalgia, you may be more likely to develop the disease as well. It is important to note that scientists are not exactly sure if this points to genetics or shared environmental factors or perhaps a combination of both.
Having a rheumatic disease: If you have a rheumatic disease, such as rheumatoid arthritis or lupus, you may be more likely to develop fibromyalgia.
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What causes Fibromyalgia?
Like with many autoimmune diseases, the cause of fibromyalgia is unknown. Researchers and physicians speculate that it most likely involves a variety of factors. These may include:
Genetics: As mentioned above, fibromyalgia tends to run in families which may mean that there could be certain genetic mutations making you more susceptible to developing the disorder. A person’s genes may also play a factor in how pain is processed by the brain. This is to say that perhaps those with fibro have a specific gene that causes their body to react much more strongly to stimuli than others who would not perceive the same thing as painful. (Specific genes exist that are found much more commonly in fibromyalgia patients which led to this theory.)
Illness or Infections: Some illnesses or repetitive injuries may trigger or aggravate fibromyalgia.
Physical or emotional trauma: Post-traumatic stress disorder has been linked to fibromyalgia. A traumatic event such as an automobile accident is one example of something traumatic that may trigger FMS. Some also connect it to repetitive injuries.
Problems with the central nervous system: Researchers are studying how the central nervous system (the brain and spinal cord) processes pain and how that may lead to fibromyalgia.
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Symptoms of Fibromyalgia
While widespread and intense pain is the most common symptom in fibromyalgia, and in fact, is the reason that most end up visiting a physician in the first place, there are several other common symptoms in fibromyalgia patients. Fatigue is probably the second most discussed symptom. This fatigue is debilitating and often interferes with the activities of daily life.
Symptoms may sometimes begin after an illness or infection, surgery, physical trauma, or even after significant psychological stress such as a car accident or major life event. In other cases, symptoms might begin to appear gradually and build over time with no single, identifiable triggering event.
The three most common symptoms are:
Generalized and widespread pain: This is often described as a constant dull ache that has lasted for at least three months. The term widespread means that the pain must occur above and below your waist and on both sides of your body.
Fatigue: With fibro, sleep is often disrupted by pain. During sleep, individuals with fibromyalgia are constantly interrupted by bursts of brain activity similar to the activity that occurs in the brain when they are awake. Sleep lab tests done on fibromyalgia patients have shown that people with FMS experience interruptions in deep sleep making their body unable to rejuvenate itself. Patients commonly experience waking exhausted and unrefreshed, or having fatigue that occurs after even mild activities like cooking dinner or taking a shower. This fatigue can keep you from starting or completing daily activities such as work, household duties, and exercise. Many patients also have other sleep disorders including restless legs syndrome, sleep apnea, and are often diagnosed with chronic fatigue syndrome.
Cognitive or memory problems: Known as “brain fog” or “fibro fog”, this frustrating symptom affects the ability to focus, pay attention and concentrate on mental tasks or tasks that require fine motor skills.
Here are some other common symptoms of FMS:
Morning stiffness
Tender points
Headaches
Anxiety
Depression
Irritable bowel syndrome
Jaw pain or TMJ
Painful menstrual cramps
Numbness, and tingling in hands, arms, feet, and legs called paresthesia
Urinary symptoms, such as pain or frequency
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What Type of Doctor Should I See for Fibromyalgia?
It is always a good idea to start with your primary care physician who can best assess your symptoms and concerns as they already know you. Your primary care physician can then refer you to a fibromyalgia specialist if you need further treatment or specialized care.
Here is a list of some of the doctors who specialize in treating fibromyalgia and pain:
Rheumatologists: This might be the first physician you are referred to see by your primary care doctor. These physicians diagnose and treat diseases of the joints, muscles, and bones such as rheumatoid arthritis, fibromyalgia, and lupus.
Pain specialists: These can include anesthesiologists, neurologists, physiatrists, psychiatrists, or oncologists who have additional training in pain management.
Neurologists: These doctors diagnose and treat disorders of the nervous system such as headaches, back pain, muscle disorders, fibromyalgia, neuropathy, and reflex sympathetic dystrophy (RSD).
Psychologists: These doctors diagnose and provide therapy and treatment solutions for problems associated with pain, perception, depression, and/or anxiety.
You may be referred to one or several different specialists. If you are seeing several physicians for the same issue, make sure to help facilitate effective communication between them. It is important to take good notes on your care and keep thorough medical records so that you can accurately report details of your treatment and any changes in medication at each visit to each individual medical provider. This will ensure that everyone is on the same page and up to date with your past and present treatments.
Some good questions to ask when you call providers and before you even go in for your first visit:
What are the office hours? (Noting whether or not they work with your schedule)
How are payments made?
What insurance do you accept?
Is the individual doctor on call or is it shared between a team of physicians?
Pay careful attention to how you are treated when you first call this new potential healthcare provider. Is the atmosphere and level of attentiveness one you would feel comfortable navigating down the line? This may or may not be a reflection of the quality of the physician in the practice but might be something you would like to consider before making your selection.
What to take with you to your first visit:
A list of questions about any health concerns you may have
The fibromyalgia symptoms you’ve believe you have
Any past illnesses and medications you have taken
A list of all over-the-counter, prescription medications, and supplements that you are taking
Your family history of illnesses
Any lifestyle habits that could be affecting your health such as diet, exercise, and/or smoking
A listing of the causes of stress in your life
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How is it Diagnosed?
Unfortunately, fibromyalgia is often misunderstood. Despite all the latest information about fibromyalgia and an understanding of its common symptoms, physicians are still misdiagnosing this, all too common, pain disorder. As a result, many patients get diagnosed with the wrong condition such as chronic fatigue syndrome, arthritis, or another type of pain problem. It is very common for people to visit several physicians and still receive no diagnosis leaving them to wonder, despite their instincts, if their painful and debilitating symptoms are all ‘in their head’.
It is important to know that your physician must first rule out any other serious medical conditions or diseases that could be causing your symptoms before deciding if your symptoms meet the criteria for fibromyalgia. There are currently no diagnostic laboratory tests for fibromyalgia and standard laboratory tests fail to reveal a physiologic reason for pain.
Even without a single test that can determine whether or not a person has FMS, a doctor who is familiar with fibromyalgia, can make a diagnosis based on the following criteria established by the American College of Rheumatology:
Widespread pain has been in all four quadrants (upper and lower halves as well as right and left sides) of your body
Pain has been present for at least three months
Cognitive or memory problems
Fatigue, waking unrefreshed
Your doctor should also inquire about these other things:
Evaluate trigger points on your body- In the past, doctors would check 18 specific points on a person’s body to see how many of them were painful when pressed firmly, but newer guidelines don’t require a tender point exam for a confirmed diagnosis.
Question you about any sleep disturbances you have been experiencing
Evaluate your stress levels
Test for depression
Lab tests
While there is no lab test to confirm a diagnosis of fibromyalgia, your doctor may want to rule out other conditions that may have similar symptoms. Blood tests to do this may include:
Complete blood count (CBC)
Erythrocyte sedimentation rate
Thyroid function tests
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Treatment Options
Once you have received a diagnosis of FMS, your physician will create a holistic treatment plan with you that will most likely include pharmaceutical medications, an exercise program, stress reduction plan, sleep strategies, and more. Following your doctor’s recommendations will lessen your fibromyalgia symptoms and provide the opportunity for the best possible outcome.
Treatment for fibromyalgia should include both medication and self-care with a focus minimizing your symptoms and improving your overall level of health. Medications prescribed for fibromyalgia can help reduce the symptoms of pain and improve sleep.
Medications
Commonly prescribed medications include:
Analgesics/Pain relievers/NSAIDS (non-steroidal anti-inflammatory drugs): These can range from over-the-counter pain relievers such as acetaminophen (Tylenol, others), ibuprofen (Advil, Motrin IB, others) or naproxen sodium (Aleve, others) to prescription medications. NSAIDs may help ease the muscle aches, menstrual cramps and headaches associated with fibromyalgia. Your doctor might suggest a prescription pain reliever such as tramadol (Ultram, Conzip). Narcotics are not usually advised, because they can cause the patient to become either physically or psychologically dependent on them and they may even worsen the pain over time.
Antidepressants: Duloxetine (Cymbalta) and milnacipran (Savella) may help ease the pain and fatigue associated with fibromyalgia. Your doctor may also prescribe amitriptyline or fluoxetine (Prozac) to help promote restful sleep.
Anti-seizure drugs: Certain types of pain may be helped by medications designed to treat epilepsy. Gabapentin (Neurontin, Gralise) is sometimes helpful in reducing fibromyalgia symptoms, while pregabalin (Lyrica) was the first drug approved by the Food and Drug Administration to treat fibromyalgia.
Note-All medicines can have side effects and some side effects may be more severe than others. Please always review the package insert that comes with your medicine and ask your health care provider or pharmacist if you have any questions about the possible side effects.
Alternative Treatments and Self-Care Options
Self-Care Options
In the management of fibromyalgia, self-care is critical. Self-care refers to the way in which the choices you make impact your overall health and well-being. Here are some of the most important things you can do to help manage your fibromyalgia and maintain optimum levels of health.
Reduce stress: Remain as active as possible, without overexerting yourself, but find time each day to relax. Learning to say no might be a very important part of this stress reduction. Deep breathing, meditation or relaxation exercises might also be of value. Our blog on the mind/body connection is a great read on this topic!
Pace yourself: Know your limits. If you do too much on your good days, you may have more bad days. Understanding your limitations and pacing yourself is the best practice for those with fibro and other chronic illnesses. Doing too much on a good day may mean that you lose several days afterwards. This is called the Spoon Theory. See image below:
Maintain a healthy lifestyle: We have all heard these tips many times over, but they are important and do make a difference. They include eating a healthy balanced diet, limiting your caffeine intake, quitting smoking, etc.
Get enough sleep: Getting enough and the right kind of sleep can make a big difference for those with FMS. If you are still having trouble sleeping, speak with your physician about some options that may help. (See the “5 Fantastic Sleep Tips” image above.)
Exercise regularly: Your doctor may prescribe a gentle exercise routine (this could include walking, swimming, water aerobics, biking) which at first might increase your pain. Often, if done gradually over time, your symptoms may actually decrease. It is important with FMS to be as physically active as possible. Regular exercise has been shown to be one of the most effective treatments for fibro. Learning proper stretching techniques to increase range of movement is also beneficial.
Make changes at work: Many of those who have fibromyalgia will continue to work but may need to make significant modifications to do so. This might mean cutting back your hours, changing to a less demanding position within your current employment situation, or changing jobs all together. If your job requires much lifting and physical demand, you can ask your employer to help make adaptations that will allow you to keep your job. Occupational therapists can help you by designing a more comfortable workstation or find you tools that can make your job less physically taxing.
Complementary/Alternative Therapies
Although alternative treatments and therapies are not for everyone, many people have had success with relief from various symptoms like pain and sleeplessness through such things as yoga and acupuncture.
The following treatments appear to safely relieve stress and reduce pain, and some are gaining more and more acceptance among mainstream physicians:
Yoga and tai chi
Massage therapy
Acupuncture
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Living with Fibro, an Invisible Illness
Fibromyalgia is a chronic condition. By definition, chronic means that it may affect you for many years and even for your lifetime. Because many of the signs and symptoms of fibromyalgia are similar to various other disorders, you may see several doctors before receiving a diagnosis. Besides dealing with the pain and fatigue of fibromyalgia, you also may have to deal with the frustration of having a condition that’s often misunderstood.
Fibromyalgia, lupus, rheumatoid arthritis and many other conditions are considered invisible illnesses meaning they cannot be seen, but they exist. Being misunderstood and judged are two of the most common frustrations with those suffering from invisible illnesses. In addition to educating yourself about fibro, you might find it helpful to provide your family, friends and co-workers with information as well. Sharing this blog might be a good start!
It’s also helpful to know that you’re not alone. Organizations such as the National Fibromyalgia Association and the American Chronic Pain Association can help provide great resources. Our own Molly’s Fund Facebook page is a fantastic community consisting of not only those who suffer from lupus, but those who suffer with fibro, RA, Sjogren’s, scleroderma and many other chronic invisible illnesses. People come there to discuss their feelings, share experiences, send humor, give support and provide each other with tips when living with these conditions.
In conclusion, while there is no cure for fibromyalgia, there are five things that you should know that may improve your outlook about this disease:
A variety of medications can help control symptoms. In addition, your doctor may provide a treatment plan that involves medications and lifestyle strategies. This may include exercise, relaxation and stress-reduction measures which may also help lessen symptoms from fibromyalgia.
Fibromyalgia is not a progressive disease (meaning the disease will not worsen or spread over time).
It is never fatal.
It will not cause damage to the muscles, joints, or internal organs and in many people, the condition can even improve over time.
The prognosis for people with fibromyalgia is getting better every year.
Thank you for taking the time to read this blog. If you have found it informative or helpful, please share it with others through social media or comment on it below. We always welcome any input you may have.
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Sources: www.mayoclinic.org, www.niams.nih.gov, www.webmd.com, www.livestrong.com, www.news-medical.net, www.myalgia.com
*All images unless otherwise noted are property of and were created by Molly’s Fund Fighting Lupus. To use one of these images, please contact us at info@mollysfund.org for written permission; image credit and link-back must be given to Molly’s Fund Fighting Lupus.
**All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.
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