Frequently asked questions by Fibromyalgia patients, including ‘Is fibromyalgia hereditary?’ and ‘Why do some doctors say fibromyalgia is not real or that it’s all in my head?’
Is fibromyalgia hereditary?
Current research seems to indicate that some people have a genetic predisposition to fibromyalgia, although the symptoms usually do not show up until triggered by some kind of trauma – either a physical trauma like an illness or injury, or an emotional trauma that produces severe, prolonged stress.
We do know that often more than one family member has fibromyalgia, which lends credence to the idea that there is some sort of genetic link. In fact, the Cincinnati Children’s Hospital, which has a pediatric pain program, says approximately 75% of children diagnosed with juvenile fibromyalgia have a family member who also has FM.
Why do some doctors say fibromyalgia is not real or that it’s all in my head?
Because up until now there hasn’t been a lab test that could definitively diagnose FM, some doctors refuse to believe it’s a real, physical illness. Unfortunately this has happened with other diseases, too, like Multiple Sclerosis and Parkinson’s. It’s sad but when doctors can’t figure out what is causing someone’s symptoms, too often their tendency is to attribute it to something psychological.
Fortunately since research has clearly established numerous biological abnormalities in FM patients and the FDA has approved three medications to treat fibromyalgia, more and more doctors are coming to recognize it as a legitimate illness. In 2013 a new blood test was introduced that the manufacturer claims will accurately diagnose fibromyalgia 93-99% of the time. Hopefully in time that will help convince even the staunchest doubters that FM is real. The test will most likely have to undergo more clinical trials before all are convinced, though. It’s also a fairly expensive test and because it’s so new, a lot of insurance companies aren’t covering it yet, so it may be a few years before it’s widely used.
The most important thing is, if you doctor doesn’t believe your symptoms are real, you owe it to yourself to find a new doctor – someone who believes you and is willing to work with you to find a treatment plan that meets your needs.
Should I see a specialist for my fibromyalgia?
There really is no single medical speciality that treats fibromyalgia. At first FM patients were referred to rheumatologists because fibromyalgia was thought to be a form of arthritis. However, since research has shown it to be more of a central nervous system (CNS) problem, many rheumatologists are no longer accepting FM patients. And although CNS conditions are often treated by neurologists, fibromyalgia is relatively new for that field so they are often reluctant to treat it.
The best doctor for fibromyalgia patient to see is one who has lots of experience treating FM and is willing to work with you to find the most effective treatment plan. Often that may be a general practitioner or internist.
How do I find a good doctor?
One of the best ways to find a good doctor for fibromyalgia is to ask another FM patient in your area. Fibromyalgia support groups can be an excellent resource for doctor referrals. If you don’t know whether there are any local support groups, check with area hospitals and newspapers.
How can I tell if a new symptom is just part of my fibromyalgia?
Because fibromyalgia can have so many varied symptoms and overlapping conditions, it can be difficult to determine whether a new symptom is something serious or just another strange FM symptom. Too often patients and doctors alike have a tendency to write off a new symptom as just part of your fibromyalgia.
If you have any doubts, it’s always best to check with your doctor. And don’t hesitate to press your doctor to investigate further if you feel like something else is wrong. If you’ve had FM for very long, you probably know your body well and have a pretty good feel for what is “normal” for you.
Are chest pains normal for fibromyalgia?
Some people with fibromyalgia do experience chest pains. However, when it comes to chest pain, it’s never a good idea to just assume it’s related to FM. Any new chest pain should be investigated immediately. If chest pain is not something you regularly experience with FM, then it definitely needs to be checked out. If you frequently have chest pain with your FM, any chest pain that feels new or different needs to be looked into right away.
Also, if you have any other symptoms of a heart attack in addition to the chest pain, get to the emergency room as quickly as possible. Don’t ever hesitate to call 911 or at least have someone drive you to the closest emergency room. It’s far better to have a false alarm than to ignore a possible heart attack.
Is fibromyalgia a degenerative disease?
The medical definition of a degenerative disease is “any disease in which deterioration of structure or function of tissue occurs.” By that definition, fibromyalgia is not considered to be a degenerative disease because there is no evidence of any actual tissue deterioration.
It’s difficult to predict how the course of any individual’s FM will go. Some people will gradually improve over time, while others will only seem to get worse. By its nature, FM tends to wax and wane, meaning sometimes it’s worse and sometimes it’s better. Most FM patients experience good days and bad days. The goal is to increase the number of good days and decrease the number of bad days. The patients who are proactive and take charge of their own health care by learning all they can about FM and continuing to try different combinations of medications, complementary treatments and lifestyle adjustments tend to do better overall.
Can I still work with fibromyalgia?
It is estimated that 60% of people with fibromyalgia work full-time jobs. While working when you have FM is not easy, it does offer some important benefits if you’re able to do it. In addition to the obvious financial benefits, working can contribute to feelings of self-worth, provide opportunities for social interaction, offer intellectual challenges and even help distract your mind from your illness for periods of time as you focus on your job tasks.
In most cases, there are modifications that can be made to your job, schedule or workspace that can improve your ability to continue working and increase your productivity. According to the Americans with Disabilities Act (ADA), most employers are obligated to make “reasonable accommodations” for people with disabilities.
For more information about working with FM and examples of reasonable accommodations, see our Disability Insurance section.
If I can’t work because of my fibromyalgia, can I qualify for disability?
You may qualify for disability but it’s not guaranteed. Approximately 25% of people with fibromyalgia receive some type of disability benefits. There are two types of disability benefits you may be eligible to apply for: Social Security Disability Insurance and private Long-Term Disability Insurance, which may be provided through your employer. Neither process is quick or easy but if you’re not able to work, it’s worth the effort to apply. To improve your chances, learn all you can about disability for fibromyalgia before you first apply.
On July 25, 2012, the Social Security Administration (SSA) issued a new ruling that recognized fibromyalgia as a legitimate impairment. While the ruling helps, it doesn’t guarantee that any individual will automatically be granted SSD just because they have fibromyalgia. It does, however, provide guidance on how evidence is developed to establish that a person has a medically determinable impairment (MDI) of fibromyalgia, and how the SSA evaluates fibromyalgia in disability claims and continuing disability reviews under titles II and XVI of the Social Security Act.
For more information about the Social Security Disability Insurance and Long-Term Disability Insurance processes, including articles by attorneys who specialize in each type, see our Disability Insurance section.