About 2-3% of the population has.
But what exactly is it or is it just a catch all for “we don’t know what’s wrong with you”?
Fibromyalgia is very real. It is chronic, widespread pain throughout the body. Over the past several decades, doctors have come to recognize it as a bona fide disease. The symptoms are often found in patients who have been diagnosed in the past with:
Depression and./or anxiety
Chronic pain in the neck, shoulders, back, joints
Irritable bowel syndrome
Morning stiffness your fingers or to
Numbness and tingling sensations, especially in your extreme ties
Are extremely sensitive to chemical and/or medications
Have cognitive or memory diminishing
Have had any of these symptoms for many years
Have an auto-immune disease such as lupus, Rheumatoid Arthritis
Have chronic eye pain or over sensitivity to light
TMJ – jaw pain
That is why it is so hard to diagnose fibromyalgia. Chronic pain baffles doctors because nothing seems to cure it. And it lingers, sometimes worsens, sometimes gets a bit better. Tests keep coming up negative. X-rays, CT scans and MRI’s are inconclusive. Conventional pain killers and muscle relaxers are non-effective. Sometimes patients feel like giving up, are tired of going to doctor after doctor with no results, and end up thinking it is all in their heads. More often than not their love ones are telling them that.
But fibromyalgia is not just a catch-all diagnosis to be used when physicians cannot come up with something else for a diagnosis. It is not all mental, just as it is not all physical. Yes, stress can exasperate any pain, and chronic pain can lead to depressive and anxious moods. Of course patients with fibromyalgia are down because doing everyday activities hurt, they cannot do what they want to do and nothing seems to relive their pain. They do not sleep well, which leads to fatigue. It can be a vicious circle of emotional and physical discomfort.
It helps to know where the name fibromyalgia comes from. The fibroids are the bulbous tips of the nerves that run throughout our muscles and soft issues. Myo means muscle in Greek, and algio means pain. True fibromyalgia patients will have pain in 11 of the 18 trigger points in the body, though some do have less.
If you have had widespread pain for more than three months in all four quadrants of your body (i.e. in your shoulders, neck, chest, hips, knees, elbows on both sides), especially if you press on them, and if you feel chronically fatigued , have your doctor do a trigger point sensitivity test. Then together you can discuss ways to relive the discomfort. There is no cure, but there are treatments that can help.
And don’t worry, fibromyalgia does not permanently impair your muscles. You will have good days and bad days. But you won’t have all bad days.
How Do Doctors Diagnose Fibromyalgia?
We know fibromyalgia is chronic, it occurs all over the body, and it has a myriad of secondary symptoms.
So how in the world can doctors come up with a firm diagnosis and tell their patient, “You definitely have this syndrome”?
Medical science has not come up with a test that will confirm a patient has fibromyalgia.
Still, there are tests that a doctor may want to order just to make sure the symptoms are not signs of another disease.
These tests may include:
Blood tests – to determine if the thyroid is functioning properly, if there is a presence of a hormonal or chemical imbalance, if there is a change in the sedimentation rate that might indicate an auto-immune disease like RA or Lupus, or if there is a vitamin deficiency . Blood tests are great tools to rule out everything BUT fibromyalgia.
Nerve conduction studies, circulatory studies, MRIs or CT scans may all be used to make sure there is not another cause for the painful symptoms.
GI tests, esophageal studies, and sonograms of the gall bladder, liver and stomach may be ordered to make sure there is no serious digestive disease present..
While all of these may seem to be unnecessarily expensive and grueling to undergo, if the patient has multiple symptoms that just do not respond to medication, doctors are trained to “look elsewhere”.
The way they look is through testing.
It’s better than cutting you open, right?
There are two big clues that a person may be suffering from fibromyalgia.
The first is the tender points or trigger points.
If many of them are affected, it is a fair indication that the person has chronic pain and possibly fibromyalgia.
The second is the widespread aspect itself. Many people have low back pain or neck and shoulder pain.
Many have hip and joint pain.
Many have headaches and stomach problems. But the patient that has multiple pain areas over their body is a red flag in diagnosing fibromyalgia.
The pain can be varied. Some people say it is a burning sensation. Others says it is more like a stabbing pain.
Many sufferers says it is a dull, flu-like ache that is nagging. Some describe the pain as throbbing or shooting. Still more say it fluctuates between achy and sharpness. If you use more muscles during the day than others, the pain will migrate.
For example, if you stand all day, the pain may be more in the lower part of the body by the end of the day. If you sit and type on a keyboard all day, the pain may be in the neck, elbows, shoulders, upper chest and/or head.
As more and more doctors become familiar with the disease and it’s implications, more will be able to diagnose the likelihood that their chronic pain patient does indeed have fibromyalgia. And they will be able to diagnose it quicker and hopefully be able to help their patients adjust and cope with the symptoms sooner than later.
But more than likely, it will take time and a bunch of “ruling out” first.
And that will mean test, after test.
At least the person will know what they do not have in the end. That can be a good thing.
How to Choose Your Fibromyalgia Doctor
If you have been diagnosed with fibromyalgia you have probably been through a battery of doctors over the past several years.
You and your family doctor have ruled out all sorts of other diseases. Well, that’s good, if you think about it.
You have had blood work, x-rays, scans, specialist consults, physical therapy, seen a mental health professional.
Perhaps you have seen neurologists, rheumatologists, gastrointestinal doctors, orthopedists, pain management doctors.
You have been on the roller coaster trying to figure out if you have MS, RA, cancer, IBS, depression, lupus, thyroid problems, sleep apnea and on, and on….
It is like you need a good coach to organize all of these medical players. Well, yes you do. The problem is that fibromyalgia is so multi-symptomatic that there is no one health care official who can definitively claim to be THE RIGHT Doctor.Here is what you can do.
Try and understand what your doctor is looking for. Know the symptoms of fibromyalgia and the main two ways to diagnose that you have it for sure: multiple trigger points pain and widespread chronic pain over your entire body on both sides.
Understand that the ruling out process can be a good thing – at least you do not have some other really
Do not be afraid to ask why and be pro-active. Assist your fibromyalgia doctor in a plan of attack. Keep a list of your changing symptoms, write down what tests you have had and their results.
Make copies for specialists so you do not forget anything that may prove important.
Do not be a whiner. Be positive and you will get your fibromyalgia doctor on your side.
He or she will know you are serious in finding answers and are not a “hypochondriac”.
Go with your gut feeling. You can tell the first few minutes with a doctor if he or she is empathetic, knowledgeable and helpful.
Do they listen?
Do they respect your options about your own body?
Do they take time to explain things in terms you can understand?
Is their staff friendly, caring and helpful?
Are they knowledgeable yet willing to tell you when you need to see another specialist?
If you do not believe your are making progress, find a new fibromyalgia doctor. That is your prerogative. Not every doctor is knowledgeable about every disease.
Work with doctors that are open to alternative treatments such as massage therapy, chiropractic, organic nutrition or acupuncture.
Do not rule out getting some sort of group therapy or individual life coaching therapy. Developing good coping skills is a major factor in the overall success of treating your condition. That is nothing to be ashamed of.
When you find the right fibromyalgia doctor that can be on your team in this lifelong battle, you will feel more in control, more positive and have a better outlook on the whole fibromyalgia syndrome.
Finally, when you find the right doctor for you, listen and do what they say. Follow their instructions to the letter.
Then if what they suggest does not help, you both have grounds to figure out the next course of action.
Remember you and your doctor are a team. Honesty, determination and mutual respect are key weapons in this battle.