I've had a lot of pain and have felt really horrible for months now. After doing what seems like a million tests and finding nothing, my doctor said I have fibromyalgia. I'm having a hard time accepting that. How do I know if I have it if there's no test? What if he's wrong and it's really something else?
It can be difficult to accept a diagnosis when there's no definitive blood test or scan that shows it to you, and certainly, fibromyalgia can be a misdiagnosis (as can just about anything else). It never hurts to get a second opinion.
Dispelling your own misgivings can be difficult, though. Unfortunately, there's no single symptom we can point to and say, "That proves you have fibromyalgia." However, several things may help you decide whether this diagnosis seems to fit.
How Were You Diagnosed?
First, know that the methods doctors use to diagnose fibromyalgia are proven to work fairly well. Your doctor should have used one of two methods:
- The tender point exam, or
- Point totals of two different assessment scales.
Under both criteria, tests should be performed to rule out other possible illnesses that could cause your symptoms, and you must have had symptoms for at least three months.
If your doctor poked at multiple places around your body and asked you if it hurt, he/she probably did a tender point exam. It demonstrates widespread pain and a low pain threshold (the point at which pressure becomes painful). It's been used to diagnose fibromyalgia and as research inclusion criteria since 1990.
Under newer, alternate diagnostic criteria established in 2010, your doctor may first have read a long list of body parts or given you a written list and had you indicate where you've had pain in the last week. Next, you would have been asked to rank the severity of multiple symptoms from 0-3. The doctor then looks at your totals to determine whether you have fibromyalgia.
If your doctor didn't use either of these methods, you may be wise to question the diagnosis and should consider seeking another opinion.
If your doctor did use one of these methods, and ruled out other causes, it's highly likely that you have fibromyalgia.
Look at the Symptoms
You may be more comfortable with your diagnosis after looking over a list of symptoms (such as the Monster List of Fibromyalgia Symptoms) and seeing whether you identify with a large number of them. You don't have to have all of them to have fibromyalgia, but you should have more than a handful.
It can also help to look at some of the more unusual symptoms. They're not present in everyone with this illness, but if you have them they lend credence to the diagnosis. These symptoms include:
- Allodynia: Pain from pressure, temperature or movement across your skin that should not be painful.
- Delayed reactions to physical exertion or stressful events: Feeling OK during and immediately after exercise, only to have symptoms come on strong later, or getting through a crisis, but then crashing within a couple of hours.
- Language impairments: These can include forgetting common words (especially nouns) or having trouble putting a sentence together.
- Paresthesia: Tingling or burning sensations in the hands or arms, without any known nerve damage.
- Roving pain: Pain that seems to wander randomly around your body instead always being in the same place(s).
- Sensory overload: Strong reactions to repetitive noises (noise sensitivity), bad smells, bright or flashing light (light sensitivity), or chaotic environments.
Seek Out Others
It can also help to talk to people with fibromyalgia in a forum or on blogs. Reading their experiences and finding similarities (or lack thereof) can tell you a great deal.
If you go through all of this and believe you're misdiagnosed, you should talk to your doctor or consider seeing a specialist, such as a rheumatologist or neurologist.
If the diagnosis seems to fit but you can't stop fighting it, you may want to see a counselor to help you reach acceptance. It's normal to go through a phase of denial when you're diagnosed with a chronic illness, and some people need help getting beyond it.
Acceptance of your illness is important when it comes to successful treatment. To learn more about that, see: