One of the conditions we see in the functional and conservative internal medicine part of the practice (Comprehensive Internal Medicine) is fibromyalgia. Boy, this can be challenging for both the patient and doctor! Our hearts go out to patients suffering from fibromyalgia.
Over the past 7 years in practice, we’ve found too many patients suffering unnecessarily. Many doctors don’t follow the proper protocol to get to the diagnosis of fibromyalgia; therefore, it is extremely difficult to render proper treatment. Additionally, the diagnostic criteria has changed over the years which adds further confusion. We will discuss the diagnostic criteria later in the article.
Standard Diagnosis & Standard Treatment Can Lead to Lack of Results & Serious Side Effects
The diagnosis of fibromyalgia is often hastily given in a brief physician’s appointment based mostly on symptom reports and symptom length. The next step that usually comes with fibromyalgia is medication like Lyrica, Gabapentin, Cymbalta or Savella. These are medications that come with some serious side effects:
- Swelling of the face, mouth, lips, gums, tongue, throat, glands or neck
- Problems breathing
- Sore throat
- Skin lesions and reactions: Hives, rashes, blisters, burning in your eyes, skin pain with red or purple rash that spreads in the face or upper body, blistering or peeling
- Suicidal thoughts or behaviors
- Thoughts of self harm
- Worsening depression
- Manic episodes: Increased energy, severe trouble sleeping, racing thoughts, reckless behavior, unusually grand ideas, excess happiness or irritability, and talking more or faster
- Trouble sleeping/insomnia
- Extreme fatigue
- Panic attacks
- Dangerous impulses
- Problems operating motor vehicles (dizziness, sleepiness, concentration problems)
- Muscle pain
- Feeling sick
- Blurry vision
- Weight gain
- Swelling of the hands and feet
- Dry mouth
- Feeling “high”
- Interaction with certain medications or drugs (ACE inhibitors, diabetes medications, alcohol, narcotics, anxiety meds, NSAID’s, asprin, blood thinners, migraine meds, MAOI meds, linezolid-antibiotic, )
- Withdrawal symptoms: Headaches, nausea, diarrhea, trouble sleeping, increased sweating, anxiety, fatigue, irritability, confusion, electric shock sensations, ringing in the ears and seizures.
- Liver problems: Itching, right upper-belly pain, dark urine, yellow skin or eyes, or unexplained flu-like symptoms.
- Blood in the urine
- Unusual bruising or bleeding
- Upper stomach pain
- Chest pain
- New or worsening cough with fever
- Severe tingling or numbness
- Rapid back and forth eye movements
- Kidney problems: Little to no urination, painful or difficult urination, swelling in feet or ankles, tiredness and shortness of breath
- Visual problems: Eye pain, changes in vision, swelling or redness in or around the eye
- Hot flashes
- Excessive sweating
- Increased heart rate
- Increased blood pressure
- Excessive or uncontrolled bleeding
- Muscle Twitching
- Low salt levels in the body
We’ve found that a hastily given diagnosis and symptom based treatments have left many patients frustrated. They are frustrated that they are still suffering. They are frustrated that they are rushed through their physician appointments. They are frustrated because they feel like no one is listening to them. They are frustrated that they seem to be in an endless cycle of pain, loss of function, fatigue and countless adjustments to the medication(s). They are frustrated to the point where they sometimes feel like there’s no hope for improvement. They feel like they are going to have to “live with this” or just manage the symptoms and flareups. They are frustrated in the traditional medical model of care. They come to our door looking for hope. They come in seeking something different than what they are used to. We sympathize with you if this hits too close to home.
Let’s Start From Scratch
There has been a lot of assumptions and misconceptions regarding fibromyalgia leading to inaccurate diagnosis and treatments geared only at symptom management rather than finding a cure. Even worse, there appears to be special interest at play. So where do we start? We find it appropriate to start with the quote, “You must unlearn what you’ve learned!”
Some of what doctors and the general public knows about fibromyalgia may not be accurate. For more info, please see the following video by one of the experts in the field of evaluation and conservative treatment for fibromyalgia, Alex Vasquez, DC, ND, DO, FACN. In the video, Dr. Vasquez covers the changes in diagnostic criteria. He describes the financial motivation of special interest groups (namely the pharmaceutical companies) to change the diagnostic criteria.
The Diagnostic Criteria – American College of Rheumatology (ACR)
1990 ACR Diagnostic Criteria
The original diagnostic criteria for fibromyalgia was written in 1990. The 1990 criteria are:
- History of widespread pain lasting longer than 3 months.
- Widespread pain is defined as pain:
- On both sides of the body
- Pain above and below the waist
- Widespread pain is defined as pain:
- Pain in 11 of 18 tender points
- Pain locations: Below the base of the head (suboccipitals), lateral lower neck, between the neck and shoulder (traps), medial border of the shoulder blade (supraspinatus on the scapula), anterior chest (2nd rib), lateral elbow (lateral epicondyle), butt muscles (gluteal muscles), lateral hips (greater trochanter) and medial knee (medial joint line).
2010 ACR Diagnostic Criteria
The newest criteria was written in 2010. The criteria is as follows:
- Widespread pain index (WPI) score ≥7 and symptom severity (SS) scale score ≥5 or WPI 3-6 and SS scale score ≥9.
- Symptoms have been present at a similar level for at least 3 months
- The patient does not have a disorder that would otherwise explain the pain
The widespread pain index , symptom severity scales and other diagnostic criteria are below:
The Biggest Differences
If you closely at the criteria, you should notice some differences:
- Elimination of the physical exam component: The first difference was the elimination of the physical exam component. No longer does the criteria require you to go to a physician to check for tender points. No longer is there a need for a physical exam. In fact, the newer criteria was intentionally developed for more “self diagnosis.” A patient could thus diagnose himself/herself by filling out the above survey. This could be done online or by mail. The patient could then electronically submit this or bring this in hand to the next physician’s appointment. The patient could then specifically ask for treatment, namely prescription medication for the symptoms. Name brand prescription medications like Lyrica, Savella and Cymbalta have been driven into the consumer’s head through a steady flow of advertising (TV commercials, radio commercials, internet browser ads and print media). This would have the net affect of increasing prescriptions and sales for fibromyalgia drugs. This is a lucrative practice with the average cost around $100 for a 30 day supply (as referenced in the videos), millions of prescriptions filled per year, and criteria that make it difficult to “cure” fibromyalgia.
- Time frame of pain reports: The second major difference is the time frame of pain reports. The 1990 diagnostic criteria noted widespread pain of longer than 3 months vs. 2010 criteria that looks at symptoms on the widespread pain index over the past 7 days. We understand that the nature of fibromyalgia pain is up and down. Somedays are definetely worse than others. This change is reflected in the switch from longer than 3 months (1990 criteria) to 7 days (2010 criteria). This criteria will also make it more likely that one will be diagnosed with fibromyalgia leading to the same strategy of increased diagnosis leading to increased prescriptions, increased sales and increased drug utilization.
- Conflicts of interest: The third major difference which is not reported in the picture above was that the diagnostic criteria proposed was written by physicians that had clear conflicts of interest. The following article describes the work that went into the new 2010 diagnostic criteria. Please note that the first several pages at the bottom has text in blue. The text in blue notes the article itself and criteria recommendations were sponsored by the pharmaceutical giant Lilly Research Labs. Many of the authors of the study are physicians who have in the past accepted monetary compensation for work performed for the pharmaceutical companies including Pfizer (maker of Lyrica), Lilly (maker of Cymbalta) and Forest Laboratories (maker of Savella). The 2009 meeting that led to the revised 2010 guidelines was funded by Pfizer, again another conflict of interest. A description of the conflicts of interest is noted in Dr. Vasquez’s video and the following commentary article. Additionally, some of the larger support groups such as the FibroCollaborative group are funded by the pharmaceutical companies (Pfizer). It appears top to bottom from the research, to the outreach towards patients/potential patients/customers, to sponsoring physicians directly or indirectly, to the aggressive marketing and advertising tactics that conflicts of interest abound. “Caveat Emptor” – Buyer Beware!
Summary of “Typical” Prescription Medication Based Treatment
- “Among fibromyalgia patients taking either of two commonly prescribed drugs to reduce pain, 22 percent report substantial improvement while 21 percent had to quit the regimen due to unpleasant side effects.”
- “A frank discussion between the physician and patient about the potential benefits and harms of both drugs should occur,” Winfried Häuser, M.D. of Technische Universität München.
- “There’s an enormous amount of advertising suggesting that these drugs really help, whereas the research data show that the improvement is really minimal.” – Fred Wolfe, MD
- “Treatment with drugs alone should be discouraged.”
- A multi-faceted treatment approach including medications for those who find them helpful, exercises to improve mobility and psychological counseling to improve coping skills is recommended.
- “The medical field does poorly with the treatment of fibromyalgia in general…Chasing [a cure] with medicine doesn’t seem to work.The people who seem to me to do best sort of figure it out on their own by thinking about things, getting to know themselves, and making changes in their lives to accommodate who they’ve become.” –Brian Walitt, M.D., M.P.H.,
Going Down the Rabbit Hole
The reference of Alice in Wonderland going down the rabbit hole applies. The rabbit hole is a deep, dark place. You don’t know what’s in there. You don’t know what is on the other side. It’s scary. The same thing occurs when patients realize that standard diagnosis and prescription based medical treatment is often ineffective and has the potential for serious harm. The metaphor also is utilized when patients are so fed up they decide to step into the rabbit hole of the complementary and alternative treatments that we offer in the conservative internal medicine part of our practice, Comprehensive Internal Medicine.
What’s On The Other Side?
Fear not! It’s not so scary on the other side. If you’ve been reading this blog and clicking on the links, you’ve noted that we’ve referenced Dr. Alex Vasquez, DC, ND, DO, FACN several times. More of his videos on the topic can be found HERE, HERE and HERE. He’s a respected leader in assessment and treatment of fibromyalgia. We’ve studied his work and the work of other leaders in the field and we adhere to some basic principles listed below.
1. Make sure the patient has the right diagnosis!: Your pain and suffering is very real. Please don’t let others tell you, “It’s all just really in your head!” That being said, we’ve seen very few true cases of fibromyalgia. One of the least talked about criteria is that fibromyalgia is and should be a diagnosis of exclusion. That means all of the other diagnoses that can cause widespread, chronic pain are excluded. Those diagnoses should be removed from consideration through a comprehensive physical exam, medical imaging (X-ray, MRI, CT scan, Diagnostic Ultrasound, etc.) and appropriate lab testing (comprehensive blood work, urinalysis, food allergy/food sensitivity testing, stool testing, saliva hormone testing, etc.). This cannot be accomplished by using the 2010 or 1990 guidelines advocated by the American College of Rheumatology.
Diagnoses that can cause widespread, chronic pain and systemic problems include many autoimmune diseases (rheumatoid arthritis, lupus, psoriasis/psoriatic arthritis, inflammatory bowel disease – Chron’s/Ulcerative Colitis, multiple sclerosis, Grave’s disease, Hashimoto’s thyroiditis, other thyroid disorder, myasthenia gravis, or other autoimmune disorder), gut dysbiosis (harmful yeast, fungus, mold, parasite or bad bacteria in the stomach or intestines) or other systemic conditions.
2. Make sure to render the appropriate treatment for the correct primary diagnosis: Accurate diagnosis guides treatment. Please note that treatment is highly variable and depends on the causative agent AND patient preference. It would be extremely difficult in the context of a short article to cover all the treatment options. We will focus on the referenced work of Dr. Alex Vasquez. Gut dysbiosis is a leading cause of many triggering factors that lead to fibromyalgia. Gut dysbiosis is either:
- The presence of bad bugs (harmful yeast, fungus, mold, parasite, bacteria or virus) in the digestive system
- The lack of good bugs (good bacteria) in the digestive system
- A combination of both too many bad bugs and not enough good bugs in the digestive system.
The bad bugs produce chemicals that are toxic to our bodies. Many of these chemicals are linked to pain, fatigue, nausea, mood disorders (depression, anxiety, etc.), brain fog, concentration lapses and many of the other symptoms of fibromyalgia. These bugs would need to be eliminated through the use of specific supplementation or medication. Additionally, a good probiotic is encouraged to restore the normal flora to the gut.
It is theorized that these same toxins overload the nervous system (brain, spinal cord and peripheral nerves) inducing heightened perception of pain (central sensitization). It is also theorized that these toxins have an affect on our mitochondria. The mitochondria is the power producing area of the cell. When affected, cellular energy cannot be produced in the same amounts leading to fatigue. In this case, the treatment would be eliminate the pathogen, decrease the nervous system sensitization and pain, and assist the mitochondria in cellular energy production. Please note there are many treatment options here and we can’t get into all the specifics, but treatment comes after correct diagnosis.
3. Incorporate palliative, ancillary treatment that is customized to the patient: Getting to the right diagnosis and rendering the right treatment takes diligence, skill and patience. That’s a hard thing to tell to a patient that lives with chronic pain. That’s where the ancillary treatment strategies come in. Treatments like acupuncture, manipulations/adjustments, soft tissue mobilization, massage, movement therapy (yoga, pilates, tai chi, etc.), light therapeutic exercise, cognitive therapies (counseling, advice, encouragement, etc.) and yes even certain prescriptive medications on a short term, trial basis for pain management and quality of life come in. These medications are best utilized in a short term capacity rather than in a long term role. The treatment here is guided by a consultation with the patient. In other words, you help us find the best ancillary treatments to give you some relief until the detective work is done and until proper treatment can be rendered. In some cases, co-management with a medical doctor, osteopathic doctor or other allied health professional (physical therapist, massage therapist, acupuncturist, movement therapist, etc.) is required.
There is a lot of information in this blog. I’ll bet you are scratching your head or shrugging your shoulders right about now. You may even have a headache. Let’s keep it simple! The main question that you probably have is, “Where do I start?”.
The simple answer is give us a call at 708-532-2346 to set up a consultation with Dr. Marie. Dr. Marie can also be reached by email at email@example.com. The consultation is 1:1. It lasts approximately 45 minutes to 1 hour. She will get your whole health history. She will discuss your goals and expectations. She will begin to formulate what physical exam and testing strategies are required to get you the right diagnosis. She will layout the potential treatment options. She will proceed forward at your discretion from there. You will not be pressured. You will not be sold anything. You will leave with a bit more hope. You will leave with more treatment options. You will be treated with respect. You will be treated holistically. “Holistic Medicine For The Whole You!”
About The Author
Dr. Marie Tholl-Pappas is a mother, chiropractic physician and board certified chiropractic internist. She is the COO and co-founder of The Center for Integrated Medicine and CEO of Comprehensive Internal Medicine in Tinley Park, IL which serves the south and southwest suburbs of Chicago, IL including Tinley Park, Orland Park, Frankfort, Mokena, New Lenox, Orland Hills, Homer Glen, Lockport, Palos Park, Palos Heights and Oak Forest.
Dr. Tholl-Pappas blends the best of physical medicine with the best of integrated medicine and conservative internal medicine to help patients of all shapes and sizes with physical ailments and internal ailments. She has completed a rigorous 3 year post graduate training program and 3 part board certification exam in the areas of diagnosis and conservative internal medicine. Few chiropractors possess this elite level training in diagnosis, functional medicine and conservative internal medicine. She utilizes tools such as chiropractic manipulation, soft tissue work, biomedical acupuncture, customized nutrition and specialty laboratory testing (blood, saliva, urine, and stool) when needed. Dr. Tholl-Pappas’ clinical focus are the areas of digestive disorders, thyroid conditions, fibromyalgia, chronic fatigue syndrome, autoimmune disorders, pregnancy care, pediatric care, creation of customized nutritional plans, weight loss and conservative spine care. Her hobbies are enjoying time with her daughter and husband, rollerblading, playing with her rescue dogs (dachshunds Zoe & Zia), working out and yoga. She enjoys impacting people’s lives 1 patient and 1 outcome at a time by listening to her patients and implementing customized treatment plans that work for the individual. She can be reached by email at firstname.lastname@example.org or at 708-532-2346. Her mantra is “Holistic Medicine For The Whole You!*