More often than not, the process of diagnosing fibromyalgia is difficult. This is primarily due to the personal nature of how pain is felt. Therefore, a physician will routinely examine specific tender points throughout an individual’s body when making their diagnosis. There are 18 points in all, 9 pairs, and experience pain when pressed upon, and could spread pain to additional parts of the body.
Before Your Diagnosis
Your doctor is going to have their hands full because, like it or not, there is a lot involved with diagnosing fibromyalgia. You can help the process along by coming to your first examination or consultation prepared. By showing up prepared, your doctor will have the preliminary information they need to use as a jumping point and the foundation they need to begin the examination. Bring along:
Prescriptions List
Most doctors’ offices ask for this information on their in-take paperwork, anyway, so you’ll have it on-and to copy over. If not, you can give them this information. Write it out clearly or print it out using your computer so they can read it easily. This information will help them understand if you may be experiencing any side-effects from medications you are taking.
Medical History
Make a comprehensive compilation not only of your medical history, but also of your next of kin’s. This listing should include your current symptoms, your past medical issues, and how you are feeling today. Include every detail.
Symptom log
As soon as you begin noticing any symptoms, begin logging them. If you are having difficulty remembering when they began occurring, ask your friends and family to help you construct this log as far back as they can realistically remember. Then, moving forward, log in each time you experience symptoms again. This will help your doctor understand the frequency of symptoms, as well as when new symptoms are occurring. Make notes about the severity of symptoms, as well.
What is the Cause of Fibromyalgia?
No one knows for sure what the root cause of fibromyalgia is, which is another reason why diagnosing it is so difficult. However, a number of factors are involved with what could cause this issue. A number of researchers and experts associate the on-set of fibromyalgia with an emotionally or physically traumatic event, including car crashes. Other experts make the connection with the development of fibromyalgia to repetitive injuries or illnesses. Still other experts have the belief that fibromyalgia is a spontaneous occurrence.
How to Pin Down Fibromyalgia
Widespread pain that is chronic is fibromyalgia’s main symptom. This includes the following issues your physician will ask you about:
- Have you experienced pain for a period of at least three months?
- Is this pain localized either below or above the waist?
- Do you feel pain of both sides of your body?
Your pain symptoms can include a combination of back pain, hip pain, feet pain, knee pain, neck pain, shoulder pain, as well as pain experienced in just about every other part of your body.
Where is Pain Felt?
According to the guidelines set forth by the College of Rheumatology, individuals who have fibromyalgia will experience pain in 11 tender points or more when their physician applies a specific amount of pressure upon them. Because pain is incredibly personal and one person’s version of “I’m hurting all over the place,” is different from another person’s version, diagnosing is tough. The specific pain points your physician will check are as follows:
Back of your neck
You may experience pain behind your neck due to fibromyalgia, however it could also be due to other issues, as well. These other issues include neck strain, injuries, or rheumatoid arthritis.
In Front of Neck
Once the back of the neck is checked, the front will also be checked. The trigger points are found on both sides of the larynx, considerably above the collarbone.
Elbows
Near the outer side of patient’s arm, below the crease, tends to be where the tenderness and pain is felt most often for fibromyalgia patients. Elbow pain could, however, also be caused by injuries from strain or tendonitis.
Hips
Those suffering from fibromyalgia could experience a tender point near where the thighs join the buttock muscles. However, those experiencing osteoarthritis feel pain right in the hip joint.
Lower Back
This is the most common tender point for fibromyalgia. This pain is felt right at the very bottom of the lower back where the top of the buttocks meets.
Upper Back
In addition to the lower back, the upper back is also checked where the muscles and the tendons meet. The specific area in question is where the shoulder blades and the back muscles connect.
Knees
This is another common area for those experience fibromyalgia symptoms. Inside of the knee pads tends to feel the most-tender when touched.
Shoulders
It is common for fibromyalgia patients to experience a pain point in the shoulders, half-way between the bottom of the neck and the shoulder’s edge.
Chest
Another pain point is located two or three inches below a patient’s collarbone, on one or both sides of their sternum.
Prepare for a Journey
Even though we know where all of these pain points are felt and how tender they feel to the touch when a specific amount of pressure is applied, none of these results will show up in a blood test or an x-ray. This is the primary reason why the diagnosis for fibromyalgia is a long and difficult one. Under most circumstances, it could take as many as two years to receive an accurate fibromyalgia diagnosis.
No matter how experienced your physician is with fibromyalgia, the journey is still a long one. Therefore, it is often a frustrating experience for both your doctor and you, the patient. This is because it is the doctor’s responsibility to rule out all other conditions that mirror the symptoms of fibromyalgia first. This causes potential challenges, particularly during instances when patients are unable to clearly articulate the symptoms they are experiencing.
Drawbacks when you’re unable to clearly discuss your symptoms include:
- Your peers are telling you that you can’t be sick because you look too good.
- Expectations are placed upon you by your family for you to continue to get up and go.
- Friends lack of understanding when dates or appointments are canceled.
- You refrain from expressing how you feel so you’re not labeled a “whiner.”
The inability to discuss symptoms with your doctor is an incredibly frustrating roadblock for your doctor when trying to diagnose fibromyalgia.
Terms for Diagnosis
Before picking up any type of instrumentation or performing an examination, your doctor will first listen for some keywords during their preliminary conversation with you. They’ll be listening for specific terms or conditions that are associated with fibromyalgia. Some examples are:
Chronic Fatigue: this is marked by an extreme exhaustion that affects quality of life and prevents you from doing what you want to do on a regular basis.
Concentration or issues with memory: this is also commonly referred to as “fibro fog.” If you are experiencing an increased issue with memory loss, especially within the last three months.
Pain (of course): the specific terms that are tagged alongside the word “pain” include all over, constant, for long periods of time, and widespread.
Tenderness: Non-painful interactions, like a hug or a handshake, are now painful when they previously were not.
Unrefreshed Sleep: no matter how much sleep you get, even when you fall asleep at an adequate time and sleep throughout the night, you are unable to wake up and feel like you’ve slept at all.
Checking for Inflammatory Arthritis
When a doctor diagnosis fibromyalgia, they typically check their patient’s red blood cell sedimentation rate. This blood test will provide them information regarding the rough index of inflammation in their patient’s body. This test is abnormal for many types of arthritis, including rheumatoid arthritis. It can also produce abnormal results for some strains of infections. However, in the case of fibromyalgia and osteoarthritis, this test will produce normal results.
You may see your doctor testing for anti-CCP antibodies, as well as rheumatoid factor. When these tests are completed simultaneously, they can help provide a diagnosis for as many as 50 – 80% of rheumatoid arthritis patients.
A test for the ANA (anti-nuclear antibody) may also be performed by your doctor. As with the rheumatoid factor, ANA is an antibody in the blood that is abnormal. It is most common among systematic lupus patients. Women are the most common patients who experience lupus, especially those who are young, and the most common symptoms are fatigue and pain. Lupus could also cause problems with internal organs, including brain problems, heart disease, and kidney disease.
Further Exclusion of Other Problems
Because fibromyalgia mimics so many other medical issues, your doctor will work diligently by running a series of tests to further exclude other problems. Some of these exclusions include:
Mental health issues
Anxiety and depression disorders, among others, often feature symptoms including aches and pain similar to fibromyalgia.
Neurological disorders
Myasthenia gravis and multiple sclerosis have similar symptoms to fibromyalgia, such as tingling and numbness.
Rheumatoid diseases
There are specific conditions, examples include Sjogren’s disease and lupus, can start with localized pain and aches that mirror that of fibromyalgia.
Investigation of Triggers
There are some instances when fibromyalgia symptoms occur a short period of time after patient experiences a physically or mentally traumatic event, like a car accident for example. Patients who are diagnosed with post-traumatic stress disorder (PTSD) seem to be the most likely to receive a fibromyalgia diagnosis, therefore your doctor could ask you if you’ve undergone any events recently that were traumatic.
A genetic component also seems to be involved with fibromyalgia, as well, so your doctor could also ask you if any of your next of kin are experiencing symptoms similar to yours.
When all of this information is compiled together, your doctor will have a clearer picture of possible triggers for your symptoms. This will help them make a better determination as to how to develop a treatment plan that is effective.
New Criteria Introduced
The original criteria your doctor was required to follow was set forth in 1990 by the ACR (American College of Rheumatology), and it contained the complete diagnostics. During May of 2010, a new publication was released by the ACR containing provisional criteria, however, it was not meant as a replacement for the 1990 publication. The 2010 publication is a supplemental set of guidelines made available for doctors to address the limitations in the orginal 1990 guidelines. The primary goal of the ACR is to provide doctors with a more practical approach allowing for them to monitor symptoms more effectively, as well as the disease’s severity. How often these new criteria is being utilized within a physician’s office still remains to be seen.
These new criteria looks specifically at more symptoms and provides your doctor with an effective system of symptom monitoring for severity. These criteria also allows for flexibility, allowing for fluctuations in the threshold in the tender points from one person to the next. This means the same patient can have different results on different occasions. According to the researchers, this new method has an 88% accuracy rate.
Just like with the 1990 criteria, symptoms must be present for at least three months and other conditions must be ruled out prior to a diagnosis. These new criteria also provides doctors with two new assessment methods, and they are called WPI (Widespread Pain Index) and SS (Scale Score).
There are nineteen specific areas of the body on the WPI list where you explain you’ve experienced pain within the previous week. One point is given on your chart for each area, therefore the final week’s scoring is between 0-19.
On the SS chart’s scoring, you will be discussing your symptoms on a ranking from 0-3. The specific symptoms include the following:
- Cognitive issues (brain fog)
- Excessive fatigue
- Physical problems (bowel issues, dizziness, hair loss, headaches, nausea, numbness, tingling, weakness, etc.)
- Un-refreshed waking
Once the numbers are added up on your chart, they should total up to 0-12.
According to the new criteria, you will receive a diagnosis only if you have either:
- a WPI score of 7 or higher and a SS scale of 5 or greater, OR
- a WPI score of between 3 and 6 and a SS scale of 9 or greater.
The document containing the full criteria your doctor will use if they follow the new guideline is available online. It includes all of the 19 areas of the WPI, as well of the longer list of symptoms. You can find the .pdf document here: Fibromyalgia Diagnostic Criteria.
Fibromyalgia Treatment
At this time, there is no known cure for fibromyalgia. However, there are a number of treatment options available to you. With a team effort including education about this syndrome, aerobic exercise, behavioral therapies, and pharmaceuticals can help relieve symptoms.
When you use a combination of these therapies, or all of them if needed, you can see a dramatic impact on your quality of life. It takes time and effort to stay educated regarding a systematic treatment program that will help you remain successful with managing your symptoms, but it is not impossible. Some alternative remedies may be beneficial, but your doctor may suggest the use of prescribed medications first.
While working with your doctor through your treatment program, you will also have to work on making some adaptations to your lifestyle. These changes may be uncomfortable at first and take some time to get used, especially for your friends and family. This is where having a strong support system surrounding you is crucial. However, in the case of fibromyalgia, these changes brings forth positive and recognizable improvements in the quality of life and functionality in patients. Educate your peers with regards to this and you will have even more potential for improvement.
Obtain Mental Health Support
It isn’t easy living with a chronic illness, and this poses different challenges for every individual on an emotional level. For fibromyalgia patients, it is important for the development of a program that not only provides emotional support, but also allows them to increase their lines of communication with their friends and family members. There are many communities throughout the country, as well as abroad, with recognized organizations supporting fibromyalgia. These support groups are the first step toward helping patients cope with their chronic illness and the fact that it could be with them throughout their lifetime.
Physical Therapy
Sometimes physical therapy is beneficial and it includes acupressure, acupuncture, application of cold or heat, aromatherapy, biofeedback, breathing techniques, cognitive therapy, chiropractic manipulation, light aerobics, nutritional supplements, myofascial release therapy, relaxation therapy, and yoga. When a multi-faceted approach is taken by each patient, input should be gathered and communicated between them and their doctor so a well-rounded and individualized approach that works for them is created for their treatment plan. There are a large number of facilities located throughout the country that are dedicated specifically to fibromyalgia physical therapies.
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