Fibromyalgia Doctors - 2022 Fibromyalgia Community Conference

Table of Contents

Two Decades of Writing. Sharing Helps Me Out

Today’s post highlights our fibromyalgia doctors and medical professionals at the first annual Fibromyalgia Community Conference hosted by Fibromyalgia Support Network and Looms4Lupus.com.

If you want to view what our community patient leaders had to say at this event, check out my first event recap for this event at 2022 Fibromyalgia Community Leaders which offers more on the common themes we are seeing in our community amongst patients. As always a huge congrats to Melissa Talwar, Executive Director of Fibromyalgia Support Network and her team including Brandi Privitera (BeingFibroMom.com) and Estela and Juana Mata from Looms4Lupus.

Much like I did for the SAA’s Global Spondyloarthritis Summit, I’m going to work my way through presentations and add in bullet points for each presentation that I had access to.

Please watch the videos as I’m only catching a fraction of the incredible amount of information that these experts have kindly offered us!

Fibromyalgia Doctors & Experts

Dr. Martin Rutherford, DC, CFMP – Healthcare Provider and Functional Medicine

Dr. Martin Rutherford has been in the healthcare field for over 40 years treating patients with enthusiasm, inspiring them, and providing informative patient education. He has been trailblazing a path for patients living with fibromyalgia and other chronic illness conditions. He also suffers from health problems himself and gives us a brief overview of his own medical history.

As a Certified Functional Medicine Practitioner, radio talk-show host, lecturer, and producer of the Power Health Series, Dr. Rutherford is well respected and often interviewed for his opinion on the current relevant healthcare topics facing us. He has given over 400 health care seminars and his YouTube channel dedicated to Functional Medicine and Functional Neurology has over 3 million views and continues to grow every day. His mission is getting people better and keeping them healthy.

Dr. Rutherford recalls getting mono when he was in his early 20s and his case of mono lasted for 14 months rather than the usual 4-6 weeks. He believes this is also when he started having thyroid conditions. He never recovered from it. Like many patients, he said he felt it was just age and never suspected that he was chronically ill. In his late 40s he got pneumonia and was down again for weeks and started developing things like joint pain and more. Dr. Rutherford himself has five autoimmune conditions.

When someone comes to him with fibromyalgia, the first thing he thinks of is autoimmune and complex. There are so many overlaps with these types of patients. He reminds us that doctors must look for Hashimoto’s Disease. In every single case that comes into his office, he discovered that 7 out of 10 patients have thyroid issues. He also highlights that most patients have leaky gut and gallbladder problems.

Functional medicine came about because of things like fibromyalgia and MECFS
The problem with functional medicine is that it’s not regulated. That means that anyone can call themselves a functional medicine doctor. For example, a massage therapist can take a weekend course and call themselves a functional medicine practitioner.
You can work on it with diet, herbals lifestyle changes, and get phenomenal changes through changing your life with fibromyalgia.
42+ triggers of fibromyalgia that we know of, including long COVID.
There are so many moving pieces that doctors need to know, and they have an extensive evaluation with 289 questions that is hugely diagnostic, then order the right labs
Fluctuating blood sugar can trigger pain and brain problems, for example, and no one looks at that until you’re diabetic
You can be pre-diabetic for 10 years before doctors clue into it. (This patient has been pre-diabetic for 8 years and my docs don’t seem to care. I guess they’ll care when I am diabetic? No idea.)
Low blood sugar is a huge problem. Check your blood sugar if you’re waking up in the middle of the night. You’re probably not eating enough or not eating the right things and your brain is waking you up!
Dr. Rutherford stresses the importance of getting a great medical history and exam and sadly, that’s no longer available as everyone these days are focused on tests
He says that he sees lots of patients that already know a lot about fibromyalgia because they’re doing the research but they haven’t looked at all the pieces like diet changes and lifestyle changes
Functional medicine offers an organized way to attack all of your problems. It is a systems based approach.
If your functional medicine practitioner is not doing a good history work up or hasn’t talked to you about diet, etc, that’s probably not the right person for you
Melissa mentions that many of us are pre-diabetic and I’m nodding my head because I’ve seen it too

Who does Dr. Rutherford see?

He sees all sorts of patients! 75% of his patients are chronic fibromyalgia, chronic pain, IBS, super fatigued, chronic mystery disease patients. He reminds us he sees a lot of peripheral neuropathy patients and one part of fibromyalgia is small fiber neuropathy which is burning pain that starts in your feet and spreads elsewhere in your body.

He reminds us that functional medicine doctors have to know a little bit of everything: Brain, gut, neuropathy, dizziness, vertigo, cardio, thyroid, etc.

Watch the full video here:

Please check out Dr. Martin Rutherford’s YouTube channel. You can also find him at: https://powerhealthreno.com/.

Dr. Olga Pinkston – Healthcare Provider and Rheumatologist – RHEUM Coach

Dr. Olga Pinkston is a board-certified rheumatologist. Her practice is based in Kentucky. She graduated from the Mayo Clinic rheumatology fellowship and has many hours of work with additional training with pain science education, trauma, somatics, and nutrition. She is also a certified life coach. She works with patients living with rheumatic and autoimmune conditions, and most importantly with fibromyalgia patients!

Since graduating she has seen increased number of patients with increasing anxiety, depression, PTSD, medical trauma, new rheumatology and fibromyalgia cases. The pandemic has also increased her fears of stress, fear of exposure, workload, and risk of burnout.

Living in Survival Mode: The Dysregulated nervous system and its role in autoimmune conditions such as chronic pain and fibromyalgia.

She sees so many problems developing because of stress and she talks about how fibromyalgia patients have stressed nervous systems. She aims to educate her patients and teach them through her podcast called Mind Your Fibro or at RheumCoach.com.

Nervous System 101 – The central nervous system (CNS) is comprised of the brain and spinal cord. The brain controls most functions of the body and the spinal cord is an extension of the brain. The peripheral nervous system is everything outside of the brain and spinal cord and it includes 12 cranial nerves in the back of the brain, spinal nerves and their roots and branches, peripheral nerves, and nerves that are coupled with muscles via the neuromuscular junctions.

Everything in your body has a nerve attached to it!

The involuntary or autonomic nervous system works in the background and regulates many functions such as heart rate, blood pressure, respiration, digestion. This system is the primary mechanism in control of the fight or flight response or the survival response. This ANS manages risks and creates patterns by changing our physiologic state – heart rate, breathing, etc.

When Dr. Pinkston talks about the dysregulated nervous system she wants you to know that YOU ARE NOT BROKEN! Your nervous system can be regulated back to its normal state. People who get fibromyalgia typically have these common fibro triggers: Trauma (early childhood trauma, physical and sexual abuse or neglect), ongoing or severe stress, infections (severe infections, recurrent infections, chronic infections and wounds), prolonged hospitalization, and injuries.

When your nervous system is dysregulated, you feel disconnected and threatened. Some unconscious functions that might be impaired include: Breathing, digestion, healing and immune system, emotions and mood, heartbeat and blood pressure, sleep and memory, hormones and glands, and sexual functions. Our immune system cannot respond to stress appropriately and sometimes gets stuck in this state.

Lots of people with pain and fibromyalgia are stuck in this state of disregulation
The health consequences can include anxiety, anger, heart disease, high blood pressure, sleep problems, chronic HA, tension, pain, diarrhea, impaired immunity
From there we hit a danger zone where we hit a state of being shut down and collapse. Symptoms include depression, constipation, low blood pressure, fatigue, weight gain, chronic pain, stiffness, impaired immunity
So what do we do? We can map our personal response patterns and we can change from living in survival mode to living in a safe and engaged mode. In other words, make friends with your ANS!
Neuroplasticity: your brain and nervous system has the ability to modify, change, and adapt throughout life and in response to experience
The work that you do is through mindfulness and paying attention to what makes you feel safe and then make lifestyle changes such as improving diet, sleep, and exercise because the goal of all of this is to reduce those feelings of danger and feel safe.

I loved this overview of how our nervous system works. This chat is quite different to what other doctors have talked about here, especially in terms of how stress damages our health. A must-see presentation for sure!

Watch the full video here:

Reclaim Your Health By Rewiring Your Brain by Ben Ahrens

How to upgrade your immune system and optimize healing with targeted neuroplasticity training

Ben Ahrens, CEO & Co-Founder of re-origin®, has consistently sought out new solutions and innovations to help humanity regain and optimize its health. Ben is a certified practitioner in bioenergetics, holistic health and integrative nutrition. He has acquired an intimate understanding of how to support people who desire changes to their body, mind, or spirit. He has a long and extended history with humans, health, and well-being. He has always been fascinated with what the human body is capable of. In his 20s, he came down with Lyme disease and was bedridden for three years which left him with Chronic Fatigue Syndrome and fibromyalgia. In searching for his own assistance, he came across brain re-training which is what his presentation about.

Reclaim Your Health by Rewiring Your Brain

One of our assumptions about brain retraining is, ‘Are we saying that these symptoms are happening in our heads?’
Of course not. There are real reasons why we feel this way! He believes there are things we can do to improve and that has also been his own experience.
Cites Dwelling on Stressful Events Increases Inflammation in the Body on Healthline in 2018 as a conversation starter
Study showed the more people thought/ruminated about stressful events, the more inflammation showed up in their bodies
The stressed brain shows beta brain waves that are fragmented and anxious, our fight or flight response kicks in
The relaxed brain shows alpha brain waves that are focused and calm, our brains are in a parasympathetic state which tells us we’re safe, and we enter a state of eustress instead of stress
No medicine or supplement will ever be as powerful as what your own body and immune system
We are learning that we can influence our immune system!
He saw upwards of 30 doctors and received many diagnoses like Multiple Sclerosis, POTS, Lyme, Juvenile Rheumatoid Arthritis, and more
He received rounds of antibiotics and was so weak he was tethered to the couch and an oxygen tank for three years
He discovered deep breathing and started learning about the body as a self-healing system
He listened to a lot of podcasts because at that time he couldn’t read, but slowly he started getting better
When it comes to a complex chronic condition, it’s never one thing that causes the problem. It’s always a number of problems, such as stress, infections, trauma, environmental toxins, injuries, and genetics and that’s when it becomes too much for the body to deal with it.
Since retraining his brain, Ben has recovered his health completely and has now devoted his time to making it his life’s work. The brain is powerful. When the brain is organized and functioning at its best, we are happy and healthy. When it’s disorganized, it never leads to good things.
Stress is a modern epidemic! 1 in 5 Americans live with chronic stress!

Watch the full video here:

Dr. Marco Loggia, PhD, Associate Professor of Radiology, Harvard Medical – Fibromyalgia Research

Dr. Marco Loggia is a US-based Italian neuroscientist who specializes in brain imaging. He is an associate professor at Harvard Medical School and directs the Pain and Neuroinflammation Imaging Laboratory, located at the Athinoula A. Martinos Center for Biomedical Imaging, Massachusetts General Hospital. He is also the associate director of the Center of Integrative Pain NeuroImaging (CiPNI) at MGH. He is known for his work on brain mechanisms of pain, especially using functional magnetic resonance imaging (fMRI)and positron emission tomography (PET).

Today Dr. Loggia is talking to us about neuroinflammation which is inflammation of the brain and spinal cord. Dr. Loggia stresses that we should be considering neuroinflammation when working with fibro patients.

What is neuroinflammation?

Neuroinflammation is inflammation in the brain and/or the spinal cord
Yes, you can have inflammation in your brain just like everywhere else in the body
The main key players are glial cells (microglia, astrocytes) and other immune cells
Causes of inflammation include: infections (viral and bacterial), neurodegeneration (ALS, Alzheimer’s, pain conditions) , aging, autoimmunity, toxic metabolites, neural activity, injury, pollution
Acute inflammation identifies a potentially harmful event, it limits its impact and repairs damage
Sometimes inflammation can become chronic
Chronic inflammation is exaggerated and pathological

Why is it relevant to pain?

Animal studies show that glial cells are involved, so yes, neuroinflammation is relevant to pain
They see glial activation which is neuroinflammation and that means the cells have become active and are signaling pain
But we still don’t truly understand how neuroinflammation works in humans and they’re working hard to understand it.

How can we see neuroinflammation?

They use imaging to see proteins called TSPO to study neuroinflammation
They use PET scans to see TSPO in vivo and they use an injection of a radiogand to see it
The radiogand binds in the body and shows inflammation
During neuroinflammation, levels in glial cells increase and contribute to things like MS, HIV, Ischemia, Alzheimer’s, chronic pain
In a healthy central nervous system, these levels remain very low

Do we see neuroinflammation in humans with pain?

Yes. They use imaging with the translocator protein to study neuroinflammation
Brain TSPO signal is elevated in patients with chronic back pain
They say patients with pain with lots of signals happening in the brain
The brain images with pain patients are very different to healthy control brains (The pain control centers are lit up on the images)
They repeated the study again and saw the same results
They also saw that in the primary somatosensory region (S1), the TSPO signal had an even higher score on the measure of fibromyalgia patients

What are the clinical implications?

Do people with fibromyalgia have neuroinflammation?
Fibromyalgia is a nociplastic pain condition that includes unexplained widespread pain, abnormal fatigue levels, un-refreshing sleep, dyscognition, memory problems, anxiety, depression and more.
He shows a scan of a human body that is lit up showing pain around the body
Dr. Loggia introduces Eva Kosek who he ended up working with on research as her team was seeing the same things
They took 31 fibromyalgia patients and 27 healthy controls and showed two scans that show TSPO in fibromyalgia – similar lit up centers of the pain (two studies, one in Boston and one in Stockholm)
TSPO is a neuroimmune signature in the brain
They found in some regions, the TSPO signal was correlated with the amount of fatigue in patients, so patients with a lot of fatigue had higher TSPO signals
He also mentions other conditions such as Gulf War Illness show widespread brain inflammation that looks a lot like fibromyalgia
From a standpoint of clinical implications, they look very similar
He also highlights that TSPO in migraine patients is high

Conclusions:

Individuals with chronic pain, including fibromyalgia, demonstrate TSPO signal elevation in their brain
Neuroinflammatory signals appear different across different conditions
Neuroinflammatory signals in different region appear to be linked to different symptoms
These data suggest that human chronic pain is accompanied by neuroimmune activation (as predicted by many animal studies)
One implication is that this information can lead to novel therapies and repurposing the existing ones for pain
Another implication is pain biomarkers – we need to find funding to find these biomarkers to better diagnose and treat pain patients
If we have biomarkers, we can say that patients REALLY are in pain and perhaps pain patients won’t be so stigmatized
Right now this isn’t available in clinical care, so patients would need to go to his laboratory
He hopes that in five years, patients will have access to this kind of testing
Melissa asks how we can support his research and Dr. Loggia says thank you to the fibromyalgia community for supporting him and being so supportive and for sharing so widely
He says that funding for research is improving, but obviously if there is a way to support further research for fibromyalgia, that would help.
He did not make a plea for research funding. The fibromyalgia community watching his presentation asked how to support furthering his research.

Watch his full video here:

Meggan Rittmaster, MS, RDN, LD, CLT

Meghan Rittmaster, MS, RDN, LD, CLT, founded Foundational Journey, a virtual dietetic private practice based out of Minnesota. She takes a personalized and holistic approach to nutrition to get to the root cause of many health symptoms and concerns. Meghan uses functional nutrition to support clients battling with Fibromyalgia/chronic pain, Chronic Fatigue, Food Sensitivities, and more. She provides food sensitivity testing/other various lab tests, helps clients navigate elimination diets, meal planning, recipes, navigating the grocery store, and more to aid in the healing journey.

Meghan is presenting on the crucial role of nutrition in Fibromyalgia, CFS, Autoimmune conditions and more. Her own journey with illness led her to help others. She has been sick since she was a child. She suffered from lots of gut problems and had unexplained rashes, unexplained swelling, and she was diagnosed by the Mayo Clinic as being allergic to viruses. She admits she wore her body down and was not feeding it well.

With Western medicine, we’re simply putting a bandaid over it to ‘fix it’. What we put in our bodies helps us or hinders us.

She got tested for mono after every tennis season because she was so wiped out. (Meghan’s journey sounds so similar to my own childhood journey only she got her fibromyalgia diagnosis in university whereas I didn’t get mine until my mid-30s. She went gluten-free and that helped her fibro. Then she went dairy-free and noticed even more positive changes. She wants us to understand the healing power of food.

Gut health plays a vital role in autoimmune conditions and I’ve written about this many times doing my own work on elimination diets and seeing how changes happen in my body. Meghan is going to explain common food triggers and diet.

She gives us a brief overview of fibromyalgia and adds other common symptoms: depression, headaches, IBS, painful menstruation, difficulty concentrating, anxiety, non cardiac chest pain, shortness of breath, hypersensitivity to various stimuli (noise, odors, bright lights, touch), urinary frequency/urgency, paresthesias (burning, itching, prickling, tingling of skin with no cause), myofascial pain, as well as many patients who meet the criteria for MECFS.

Other medical conditions share similar symptoms with fibromyalgia, including: CFS, hypothyroidism, anemia, RA, SpA, Lyme, MS, Sjogrens, cancers, dysbiosis, leaky gut, post viral immune suppression, blood sugar imbalances and more. All of the above have chronic systemic inflammation as driving factors.

Contributing factors that lead to a diagnosis: viral infection (including COVID), Multiple Chemical Sensitivity, Histamine intolerance, mold exposure, environmental sensitivities, food sensitivities, Lyme disease and tick borne illness, heavy metal exposure, GI infections, dysbiosis, parasites, candida, unresolved trauma, hormonal imbalances, etc.

Our guts include 100 trillion organisms made up of bacteria, yeast, fungi and other microbes. Our microbiome facilitates nutrient digestion and absorption, it regulates our immune system, aids metabolism, communicates with our brain, and more. The gut has its own pain receptors, nerves, and neurotransmitters often identical to those in the CNS. Research shows that the majority of fibromyalgia patients have SIBO. (Small intestinal bacterial overgrowth which is bacterial translocation from the large intestine to the small intestine. We start to see bloating, excess gas and yeast, etc.)

Diet is tailored to the individual
Diet can detract or enrich the diversity of the microbiome: refined sugars, highly processed foods, low fiber intake, additives, preservatives, high fructose corn syrup, artificial sweeteners, glyphosate, trans fats, processed foods, etc.
She always recommends people include fatty fish in their diets for omega nutrients
In short, the Standard American Diet is terrible for everyone as it includes everything listed above
Food is converted into energy in mitochondria so their potential to affect our overall health is huge
Fibro and MECFS have impaired mitochondrial function
Key nutrients that assist mitochondria are: B vitamins, magnesium, Acetyl-L-carnitine, CoQ10, Lipoic acid, nicotinamide Riboside, antioxidants, PQQ, vitamin E and D.

Watch her full presentation here:

Fibromyalgia and Sleep with Dr. Michael Lenz

Dr. Michael Lenz is a practicing physician in Delafield, Waukesha County, Wisconsin. He is Board Certified in Pediatrics and Internal Medicine which means he sees patients from newborns through adulthood. He is also a diplomat of the Board of Lifestyle Medicine and a diplomat of the Board of Clinical Lipidology. Dr. Lenz also has received a T. Colin Campbell Plant-Based Nutrition Certificate. Dr. Lenz graduated from the Medical College of Wisconsin in Milwaukee and completed his Residency at the Virginia Commonwealth University Hospitals in Richmond, Virginia.

Dr. Lenz has helped hundreds of patients suffering from fibromyalgia-like pain. He is committed to educating, inspiring, and equipping patients to walk through this battle triumphantly. Learn more at https://www.conqueringyourfibromyalgia.com/

So, I happened to watch Dr. Lenz’s presentation late at night while in bed (it was 1am and I know that’s terrible for this presentation) but my notes are extensive and I need to write them out here for you. Please check back as his presentation was fantastic and I was instantly sold on buying his book, only to find out it’s not available in Taiwan.

Sleep is such a huge topic for all of us as we’re all sleep deprived and a great many of us are insomniacs. (I got my insomnia diagnosis in university at age 23. What does one do with that, especially in the 90s? There was no information and my doctors didn’t tell me anything about it. Being a reading nerd, I read up on the subject as much as I could, but here I am 20 years later still struggling with sleep every day.)

Dr. Lenz has been a doctor for 26 years and he feels that fibromyalgia has been ignored for too long.
His patients tell him that they have pain everywhere and that they all have sleep problems
There are many ways sleep and fibromyalgia are connected. A few nights of disrupted sleep or even one night will cause heightened pain the next day
Sleep problems precede fibromyalgia. Fibro patients have distinct alpha wave activity irregularities. We have low alpha activity. All fibro patients who have this alpha sleep have worse pain after sleep. (YUP, that’s me!)
Restless leg syndrome occurs in 50%-65% of fibromyalgia patients
RLS is often dismissed in children and teens as growing pains
RLS is also heriditary. If a relative has it, it’s possible you do. Exercise helps with it!
He talks about a patient who has a FitBit and says they weren’t sure if it was working, and he said it’s because you’re moving all the time at night. (I don’t wear my FitBit to bed anymore because of this.

Do you have RLS? You can check:

An urge to move your legs. accompanied by unpleasant sensations in the legs, the unpleasant sensations are typically at night? Do you have insomnia and sleep problems and do you feel the need to move at night? Do the symptoms get worse at night? Are they worse during the night or day? Does walking or moving help to reduce the symptoms? Patients typically reflexively move their legs before the unpleasant sensations set in. Many patients are unaware of RLS until they are asked to monitor their behavior. (This fibromyalgia patient has RLS. Brutal. My husband has commented on this and we know it’s an issue. So is his snoring and sleep apnea! Also addressed in Dr. Lenz’s presentation.)

Sleep apnea should be screened in all fibromyalgia patients
Women with sleep apnea have morning headaches, exhaustion, and more pain in the mornings.
If you are someone who can’t turn your brain off at night and might wake up in the morning and feel overwhelmed, or do you have restless thoughts? These are symptoms of ADHD and many patients with RLS have ADHD.
There is a high percentage of fibromyalgia patients with ADHD^Source
If you have ADHD, he reminds us that there are super effective medications to treat it! Get tested if you suspect you have adult ADHD.
Depression also impacts sleep.
PTSD is also very prevalent in fibromyalgia patients and patients should be screened
Maladaptive behaviors with sleep are a huge problem – bad sleep habits that we’ve been doing for a long time, such as using electronics
Sleep hygiene is essential as is lifestyle changes
Here are some general comments for good sleep: Use your bed for sleep and sex only. Establish a regular cycle for bed time and wake time. Increase your sleep hygiene with a bath or shower or keeping warm. Minimize light and noise. If you have to take a nap, nap for 20 minutes. Longer naps can make night sleeping harder. Increase daylight light exposure. Increase daytime activity. Decrease light exposure at night! Avoid alcohol before three hours before bed. It causes rebound insomnia. Eliminate after dinner snacking. Minimize stress by starting to wind down at least an hour before bedtime. Listen to music that is at 60 beats per minute.
It is complicated. No two fibromyalgia patients are the same. Each person has unique internal and external challenges. For internal things, he mentions some things can be somewhat under control, but you can’t control how your brain software is wired. External challenges can be changed if you have medical conditions.
“People with fibromyalgia are very fickle! You don’t do well with changes in schedules!”

This presentation is so jam-packed, I strongly recommend watching the video. I’m only capturing a fraction of what’s available in the videos.

Watch the full video here:

Diagnosing Fibromyalgia with Dr. Samy Metyas, MD, Medical Director, Covina Arthritis Clinic

Dr Metyas is board certified in Internal Medicine and Rheumatology and has a Master’s Degree in orthopedic surgery. He has a private Rheumatology practice in Covina, CA. Dr. Metyas is also a Legacy Award Winner and his presentation was excellent and so informative! He has been treating fibromyalgia for more than 25 years and he has treated more than 3,000 patients and published hundreds of publications. He starts with a familiar image to all of us: A doctor telling a woman sitting in a hospital gown covered in spots and the doctor is telling her that everything is normal.

How common is fibromyalgia?

Fibromyalgia accounts for 14-20% of all rheumatology office visits.
It’s in 2-8% of the general population
It compromises 5% of internal medicine visits.

History of Fibromyalgia

First accounts of fibromyalgia started in the 1850s
Sir William Gowers first used the term fibrositis in 1904
From the 1930s to mid 70s, it was called psychogenic rheumatism
In 1976, Moldofsky reported that fibromyalgia patients had stage 4 sleep disturbance
In 1982, a new name was proposed and it was called fibromyalgia
In 1990, the American College of Rheumatology released a consensus on fibromyalgia criteria which included widespread pain that is present for more than three months, plus the 18 point bilateral test
In 2010/2011, the American College of Rheumatology revised its criteria to include widespread pain, fatigue and un-refreshing sleep, cognitive (memory and thought) problems, plus many other general physical symptoms, plus these symptoms must last at three months at a similar level, and no other health problem can explain the pain and other symptoms
He points out that fibromyalgia patients will fill in human form diagrams that show pain all over the body and he sees patients that have good days and bad days that come and go depending on a variety of things
He mentions patients talking about pain from hair to toes – everything hurts. It feels like the flu plus pain.
Fibromyalgia results in high levels of healthcare utilization and loss of productivity as well as disability
Other complaints include: anxiety, tension headaches, numbness, tingling, dizziness, vertigo, IBS, bloating, cramps, rectal spasms, pelvic pain, interstitial cystitis, dry eyes and mouth, cold blue hands and feet, short-term memory loss, mood changes, weight changes, night sweats, palpitations, allergies to multiple chemicals, and more.
He stresses that doctors will see other things in syndromes that overlap with fibromyalgia: the psychiatrist will see somatization, the otolaryngologist will see TMJ syndrome, the neurologist sees chronic headaches, the gastroenterologist sees IBS, the gynecologist sees PMS, the cardiologist sees costochondritis, and the rheumatologist sees fibromyalgia
Fibromyalgia is always a sleep problem! Patients can’t sleep, they can’t maintain sleep, they have insomnia, early morning awakening, and more.
Doctors must consider overlapping conditions like lupus, rheumatoid arthritis, spondyloarthpathies, and polymyalgia rhematica and exclude these diagnoses first before diagnosing fibromyalgia
He talks about COVID patients developing fibromyalgia, they develop long term post viral syndrome which causes fatigue, pain, and brain fog. He touches briefly on ME as well.
Fibromyalgia patients have elevated Substance P in their cerebrospinal fluid

Fibromyalgia Categories

In 2022 he published an article in Current Rheumatology Review: It says that fibromyalgia has previously categorized as a primary, secondary, and juvenile fibromyalgia, but these categories do not explain the disease properly or help to direct new therapies. The article and study proposes that new subcategorizations of fibromyalgia be introduced, including hormonal fibromyalgia, inflammatory fibromyalgia, neuroendocrine fibromyalgia, psychologic fibromyalgia, and neuropathic fibromyalgia ^Source
Dr. Metyas stresses that all patients are different! None of the patients at his office are the same so there is no one specific treatment that will help as it’s not just one disease.
Primary fibromyalgia, for example is just fibromyalgia. But secondary fibromyalgia has another disease behind it like AxSpA, RA, MS, etc. There’s also juvenile fibromyalgia which he sees in children. He really wants to stress that doctors look for all explanations like arthritis or cancer, but it’s fibro. The fourth category is neuroendocrine fibromyalgia and this includes POTS, tachycardia, and other issues that are not easy to treat. There is also hormonal fibromyalgia that represents a post-menopausal woman who has developed fibromyalgia because of hormone issues. Neuropathic fibromyalgia includes small fibre neuropathy.
Dr. Metyas stresses that doctors really need to know the differences in these different types of finbromaylgia
He stresses that patient education is really important as 70% of patients improve with changed lifestyle.
Do not expect a magic pill! There is no pill or medication that will cure. You MUST change your lifestyle!
There are five points to treatment: 1. Keep moving, especially in nature. 2. But don’t overdo it! He mentions that if you go and do all your errands on the same day or do a party, you’re likely going to get sick for weeks afterwards. 3. Eat healthy! You must understand how food can contribute to inflammation and be wise about what you are eating. 4. Relax and destress! Meditation, deep breathing, stress reduction. 5. Sleep hygiene. Turn off your phones and devices. Go to sleep in a quiet environment.
Complementary and alternative therapies: There is some evidence that the following can help fibromyalgia patients, including: myofascial release therapy, acupuncture, turmeric, Myer’s cocktail, trigger point injections, chiropractic manipulation, going to the spa, vitamin D, magnesium, guaifenesin, CQ10, biofeedback.

Diet in Fibromyalgia Patients

Anti-inflammatory diet (less carbs, sweets, caffeine and more fresh fruits and veg)
Gluten-free diet and anti-oxidant diet helps a lot of patients
minerals and supplements for fibromyalgia are important as mentioned above
He talks about the microbiome which is a hot topic in rheumatology and you should learn as much as you can about it
He also stresses weight loss

Dr. Metyas touches on LDN and mentions that we need further controlled studies, but he says he has seen great results from his patients on LDN. Low dose Naltrexone quiets the activated microglia while not significantly inhibiting the body’s natural pain-relieving opioids.

Love that he says his patients are his teachers! One of the reasons he started looking at LDN was because of a patient who went to him in 2009 who asked for LDN and he decided to look into it and found that it really works.

Fibromyalgia Doctors: Should Rheumatologists Treat Fibromyalgia? YES

Rheumatologists are able to properly assess musculoskeletal pain. 20% of patients with nearly any type of rheumatic disease will meet ACR criteria for fibromyalgia. He also mentions that some patients have high inflammatory markers which is not seen in many fibromyalgia patients. A higher percentage of patients will have elements of pain or other somatic complaints that cannot be explained by immune activation. Rheumatology has established a leadership role in research in on fibromyalgia. However, we need to educate primary care to properly manage fibro patients.

Yes, I want to give this man a hug, not only for his enthusiasm in explaining all of this, but for being passionate and caring so much. He really understands and shows compassion for what fibro patients go through. You are very deserving of your 2022 Legacy Award, Sir.

ASSESS THE PATIENT… NOT JUST THE PAIN!

Watch the full video here:

Myostretching with Dr. Tracey Robert Ramirez, Chiropractic Physician | Myostretching.com

Dr. Tracey is a fibromyalgia warrior as well as a fibromyalgia advocate and coach. She’s the creator of Myostretching, a neuro-muscular reeducation system that helps to reduce the intensity of chronic pain and other fibromyalgia symptoms. An upper cervical chiropractor who has also enjoyed a career in massage therapy, Dr. Tracey has a lot of experience in touch therapy. She completed her extensive education after she got her fibromyalgia diagnosis.

Dr. Tracey takes us through her own fibromyalgia journey when she got her diagnosis at age 33. She shows a photo to us at age 33 and mentions there is a wheelchair behind her, but she wouldn’t let anyone take a photo of her in it. Her hair was cut short because she couldn’t wash it and brush it on the same day. That day is etched in her mind forever as one of the most saddest days of her life because she was helpless and embarrassed by her condition. She was left bedridden and needing a wheelchair. She didn’t understand why she was on so many medications. She lived with hundreds of fibromyalgia symptoms. Her number one rule in her house with her children is that they could not touch her unless they asked for permission.

At age 56, Dr. Tracey is happier, healthier, and living a life of freedom. She still has fibromyalgia but it doesn’t control her life anymore. She credits her life today to myostretching.

Like so many people talking at this event, Dr. Tracey mentions being told by her doctors that she couldn’t be helped. She highlights keep searching for your health!

What is myostretching? There are a total of 24 movements in the program. Each phase is activated at a rate that is comfortable to you. They’ll teach you how you’ll know when your body is ready to move to the next level. Phase 1 includes foundation movements and includes how to keep track of your progress. They’ll also tell you how to begin and when to move on, while focusing on short components to ensure you do not overdo things. You can literally start in your bed.

She also mentions if you’re doing yoga, go slow and hold those movements for very short periods of time rather than holding it the length of time that these poses are held in class.

Myostretching Mantra: Slow and Steady is the Pace
Dr. Tracy Robert Ramirez, MyoStretching

Dr. Tracey also talks about how patients express that they don’t like exercise because exercise causes pain!

She highlights that it’s a movement program, not exercise. Movement is essential to life. If we don’t move enough, our bodies become a stagnant pond that become open to illness and disease. Small steps are key. One movement for a very short time, just a few minutes at a time.

Naturopathic Approach to Fibromyalgia – Dr. Nicole Silva

Doctor of Naturopathic Medicine | OneSongMedicine.com

Dr. Silva believes laughter is medicine and she likes to keep things real, as demonstrated in her video and greatly appreciated by this author. I love hearing from doctors who also have the same diseases I suffer from.

It really helps me to know that professionals out there know exactly what I’m going through. In the first minute of her presentation she shows us a slide that says the biggest measurement of her success with life with fibromyalgia is being able to ride her bike. A bike accident started her fibromyalgia at age 27 and she wouldn’t be able to get back on a bike until 10 years later at age 37. That’s around the same age that I realized that I couldn’t ride a bike anymore! Dr. Silva’s presentation aims to inspire you to get back on your metaphorical bike and while I will never be able to do that again, I appreciate this message of hope so much!

Dr. Silva has a bachelor’s degree in psychology with a focus on behavioral psychology, but she mentions that you have to have basic science prerequisites and a bachelor’s degree to get into any 4-year naturopathic medical school. In addition to the biomedical sciences taught at conventional medical schools, a holistic approach is emphasized with additional specialized training in lifestyle coaching, nutrition, botanical medicine, physical medicine, and minor surgery. She discloses that she does not practice physical medicine and surgery of any kind.

A brief overview of naturopathic medicine shows us that its current iteration has been practiced for over 150 years, but its roots stem from traditional medicine practices that are thousands of years old. Naturopathic medicine is practiced in 80 out of 195 countries.

When Dr. Silva hears, ‘Fibromyalgia is a wastebasket diagnosis’, her response is ‘Just because you throw something in a wastebasket doesn’t mean it’s trash.

Dr. Silva talks about cycling through different stages of illness, feeling freedom, feeling imprisoned, feeling empowered, and having different levels of identification with diagnosis. She shows us a slide of a tree that is dead, but a new tree has grown on top of it and its roots have grown around the dead tree and rooted into the ground. She feels this is a good metaphor for us and I totally agree. Dr. Silva recommends that we keep finding our truth, find what is helpful to you to navigate your journey, learn which part of you is talking and being able to distinguish between these feelings helps us on our journey with illness. It is the awareness and consciousness about the process that matter the most.

Fibromyalgia patients are almost always really driven people. She thinks that this might be a contributing factor to why some of us develop it, and that is also why the ‘lazy’ stereotype can be so devastating to us. It’s important that we remember that your journey will look completely different to someone else’s journey.

Watch her full video here:

Understanding Recent Fibromyalgia Research Breakthroughs – Dr. Ginerva Liptan

Board-Certified Internal Medicine | Researcher I Frida Center for Fibromyalgia I DrLiptan.com

Dr. Liptan is a ROCK STAR. FULL STOP. We all agree and we love her. It’s always good to hear from doctors who suffer from fibromyalgia and got her diagnosis in 2000 when she was in medical school.

This is one of the presentations I’ve been waiting for since Support Fibromyalgia Network announced the first annual Fibromyalgia Community Conference. So let’s get started with Dr. Liptan’s presentation!

Since Dr. Liptan has so much information for us, I’ve condensed things down into bite sized chunks of information.

We are really lacking in funding for fibromyalgia! How can we donate and raise money?
One study she mentions that happened during COVID is the fibromyalgia mouse study, which didn’t get as much attention as it should have during the height of the pandemic. Published July 2021 and called Passive Transfer of Fibromyalgia Symptoms From Patients To Mice (Link to PubMed release)
It has revolutionized how we think about fibromyalgia because this study proves the immune system component of fibromyalgia
They took blood from fibro patients and healthy folks, purified the blood and took out the IGG antibodies, which are antibodies that stick around in your system
The mice that received the antibodies from the fibromyalgia patients started showing fibromyalgia symptoms
They developed pain and became more sensitive to pain, their nerves were more excitable, so when they got a little stimulus, they reacted, they moved less, and then they saw the binding of these antibodies to the spinal cord, which is important because it tells us what’s going on with our muscles and nerves and it tells us why we’re so hyper sensitive and why are brains are hyper sensitive.
Interestingly, it was not permanent! The mice returned to normal once the antibodies were gone from their systems.
Dr. Liptan thinks that because of the importance of this study, we should start seeing more money coming in for more research from pharma companies which will advance the science
Dr. Liptan also says that by the time we finish watching all the doctors here at the fibromyalgia conference, we’ll likely be more educated about fibromyalgia than most doctors
NOTE FROM CARRIE: Especially if you have read her book! THE FIBRO MANUAL
We already know that a trauma, an illness, an injury or an infection that activates the chain reaction of fibromyalgia in our fight or flight response

Significant research findings in fibromyalgia include:

Sympathetic nervous system hyperactivity – Our brain is constantly getting ready for fight or flight and for both of these responses, we must have tight muscles
Guess what fibro patients have all the time? Are your muscles tight right now? Dr. Liptan’s are, because she suffers from fibromyalgia. This author also has tight and tense muscles right now!
Poor quality sleep with frequent arousals – it’s like sleeping with one eye open or airplane sleep
Abnormally high intramuscular pressure and impaired muscle relaxation
Markers of oxidative stress and inflammation of muscle and fascia – Our muscles and fascia are really angry and enflamed and we use a lot of energy during this process and then we see the byproducts of energy use
We have elevated IL-6 and IL-8 which means we have inflammation floating around in our blood, around our brain, and around our spinal cord – Brain on fire! Enflamed brain and enflamed blood. Feeling of bruised muscles all over your body
We have increased substance P in CFS (P stands for Pain!)
We also see brain glial cell activation throughout the brain cortex of fibromyalgia patients. We don’t see this in healthy people
In 2002 we saw central sensitization studies (hyper-sensitivity to pain in brain and spinal cord) and that’s where we saw the development of medicines like Cymbalta, Lyrica, duloxotine, etc to treat central sensitization
After 2012, all the funding dropped off. After this, Dr. Liptan really focused on trying to continue these studies because everyone else had dropped it because they thought they had solved it.
If central sensitization was the solution then we’d see these medicines working, but we know that these meds only work with 30% of fibromyalgia patients
The dorsal root ganglion is the way station between our peripheral nerves, spinal cord and brain. It also has receptors for antibodies, so when it senses an abnormal antibody response, it tells us something is going on and that something is wrong
Dr. Lipton feels that the people that did the mouse study came to some wrong conclusions, but you can learn more about that in her video at: https://www.facebook.com/watch/?ref=saved&v=1272667063530339
30% to 40% of patients with fibromyalgia have a co-morbid autoimmune condition such as lupus, RA, AS, PsA, and Hashimotos for example!
10-12 million patients suffer from fibromyalgia. Melissa suggests that if all of those patients donated one dollar, we’d have the money for more research and studies! (I like that suggestion and wish we could support research!)

At this point, we are ready for our live Q&A for this amazing presentation:

What do we know about fibromyalgia being an autoimmune condition? If we use the definition that antibodies directed at your own tissue are causing problems, such as what we see in Psoriatic Arthritis, then it meets the definition for an autoimmune condition. Dr. Liptan thinks there needs to be more research because the conclusion of the mouse study was not exactly correct. But there are certainly some aspects to it. She points out that we’ve tried many treatments that work with autoimmune diseases such as prednisone and we know that these medications don’t work for fibromyalgia. Fibro does not fit a classic autoimmune condition definition.

Why can’t we find positive inflammatory markers in blood work of patients with fibromyalgia, especially since we hear so much about the inflammatory process of fibromyalgia?

We use SED rate, ESR, CRP blood markers are elevated in classic inflammatory autoimmune conditions like Ankylosing Spondylitis, Rheumatoid Arthritis, lupus, but they are not elevated in fibromyalgia. If you look at other levels like IL-6 which is part of the inflammatory system, the cytokines are elevated in fibromyalgia and it’s hard to get tested for this because it’s only part of the research. There are 400 inflammatory markers and we’re not looking at them yet. We’re only looking at the main ones right now which is super frustrating for fibromyalgia patients.

The standard markers mentioned above (SED, ESR, CRP) are not present. If those markers are present, Dr. Liptan starts looking at other classic autoimmune conditions.

Dr. Liptan also mentions that CBD is very useful for reducing inflammation and she hopes we can see more studies with it, but the studies can cost millions of dollars.

I really want to send her virtual hugs because she’s the best! Her presentation and her demeanor are so calm and reassuring! Love her! And I loved that Dr. Liptan also credited the patient advocate community for pushing the needle forward on raising awareness and giving doctors and researchers a chance to talk about their research and work!

Watch the full video here:

Invisible Inequities Research Presentation with Dr. Sarah Devoto

University Lecturer | Professional Researcher at University of California, Merced

The Power within Fibromyalgia: Intersectional Experiences of Chronic Pain

Sarah Devoto, Ph.D. is a sociologist advocating for new understandings of (dis)ability, health, and well-being. She designs research (quantitative and qualitative) which explores wellness while living with chronic illness, illuminating the intersections of gender, race, and class. Dr. Devoto’s is a doctor of sociology so she cannot diagnose anyone, but she can explain the social structures and the ability to improve with fibromyalgia and chronic pain. Sociologists are social scientists that research power dynamics and they are often interested in social equalities and injustices.

How do individuals make sense of chronic illness that are not considered real by everybody in society? Although fibromyalgia is categorized as a disability by the ADA, there is still a lot of skepticism about the realness of this condition. Fibromyalgia is a unique sociological case that is an invisible illness and a contested illness because it is not embraced by all health practitioners.

Dr. Devoto also suffers from fibromyalgia and her friend has it, so she has extra insight that she can use in her research. She conducted community based research for her project and begins her presentation with outlining diagnostic patterns and myths.

Fact or Fiction: Fibromyalgia affects white, working-class women. She references three studies that show how biased studies are:

“91% of people who receive fibromyalgia diagnoses are women.” Quieroz 2013
“Some studies show white people making up to 75% of those diagnosed.” Haviland et al 2010:
“Fibromyalgia is typically associated with low-income people, and research typically uses education as a proxy variable.” Barker 2005

Through her surveys, she found that her survey results were overwhelmingly women and overwhelmingly white which is what the research shows. She said that participants were well aware of these patterns and uses survey replies to demonstrate why these myths prevail. One respondent named ‘Bill’ was told by his doctor that he doesn’t have fibromyalgia because men don’t have fibromyalgia. Women respondents were often told they had a low pain threshold, were overweight, or had problems with menopause. However, she notes that fibro symptoms tend to present similarly despite gender.

I admire Dr. Levoto’s work and strongly recommend watching the video so you can see her break her findings down. Once you see the findings, you’ll likely feel like I do: astonished that these ideas still prevail and confused as to how people come to these conclusions.

I’d like to mention that I’m a white woman who has lived in Taiwan, a homogenous Asian society, for 20 years. I’m not the norm here. I can attest that our fibromyalgia groups are huge. It would be interesting to see a study like this conducted here in Taiwan.

Watch the full video here:

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And that’s it for my recap. I know it’s long, but use the table of contents to toggle to who you want to learn from.

Chronically yours,

Carrie