Diagnosing fibromyalgia by physical exam and the power of the guaifenesin protocol - Dr. Congdon and Eva of Wellacopia

TITLE: Diagnosing fibromyalgia by physical exam and the power of the guaifenesin protocol - Dr. Congdon and Eva of Wellacopia


Diagnosing fibromyalgia by physical exam - Dr. Congdon and Eva of Wellacopia 

(for the artwork only)


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Get matched with your perfect practitioner at Wellacopia.com


If you are unable to find a good match in your location yet, Eva will do the personalized matching for you anywhere in the USA. 

Text: 1-646-883-3022 or Email: Contact@Wellacopia.com


To contact or learn more from Dr. Melissa Congdon, please visit MelissaCongdonMD.com


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  1. What is your profession?

I am a physician who treats children and adults with fibromyalgia. I am a board-certified pediatrician who was in private practice for 18 years until severe fibromyalgia symptoms forced me to retire from medicine. After going on the guaifenesin protocol and getting acupuncture my symptoms dramatically declined, enabling me to return to practice medicine 20 months after I “retired.” My fibromyalgia doctor, Dr. Paul St. Amand at Harbor UCLA medical center suggested that I not go back to practicing general pediatrics but become a fibromyalgia consultant instead. I trained with him and have been doing fibromyalgia consulting for children and adults since 2010.


  1. What is your illness(es)? 

Fibromyalgia


  1. Where do you work? 

The San Francisco Bay Area


  1. Who do you work with? 

I am in solo practice, but I communicate with my mentor Dr. St. Amand frequently. I also keep in touch with many integrative medicine providers and other health care practitioners to share insights about treatments and ways to help patients feel better


  1. How did your illness shape your career?

I was sick for a long time before I was diagnosed with fibromyalgia. I have severe fatigue, dizziness, 15 migraines a month, chronic neck and shoulder pain, and irritable bowel symptoms. I thought surely I must be dying because I felt so sick and doctors could not figure out what was wrong with me. My children were young at this time, and I hoped that I would not pass away until my youngest was at least 7 years old, because I thought by that age she would remember her mother’s love. So I have been to that dark hopeless place that chronic illness can lead a person to, and I went from mostly housebound to feeling well again. My illness motivated me to help others do the same. It feels so good to feel good again!


  1. What do you do when you don't know what to do about a patient?

 First I like to think and meditate about it, then if I can’t come up with a treatment plan I will reach out to my network of healthcare providers to get insight.


  1. Are you/were you open about your illness with patients?

YES. My patients tell me it is a great help to them that I truly understand what it feels like to have fibromyalgia (physically and emotionally), and that that is one of the reasons they have chosen me to help them feel better.


  1. What are you most passionate about in regards to your work?

Two things. First of all, how to make an accurate diagnosis by physical exam, and no, I am not talking about the inaccurate tender point exam. My mentor, Dr. Paul St. Amand, taught me how to diagnose fibromyalgia using a physical exam technique called “mapping.” He has found that everyone with fibromyalgia has a pattern of very small swollen and contracted muscles along their left anterior thigh. He taught me how to detect them, and if a patient has these swellings, then they have fibromyalgia! It is not complicated! These swellings are so small and are not tender, so most people with fibromyalgia don't realize they are there -- but they are super easy to feel once you have been trained in this technique.


Secondly, I love helping people with fibromyalgia decrease their pain, improve their mood, and increase their energy. There are a lot of helpful tips I can give them to achieve this, but one of the most life changing treatments I have found for fibromyalgia is the guaifenesin protocol. Guaifenesin is an expectorant (it is the active ingredient in Mucinex) and used in the right form (long acting dye free guaifenesin) and avoiding products that can block its action, guaifenesin can decrease our muscle spasm and pain over time (as well as increase energy, improve mood, intestinal function, etc). After I dramatically improved using the guaifenesin protocol, my mentor taught me how to administer the protocol to others. It has been so successful patients thank me every month for giving them their lives back! I feel so thankful to have found the guaifenesin protocol and thankful for the opportunity to help others with fibromyalgia feel better.


  1. How do you/did you handle flares while at work? 

I am able to set my own schedule, so if I need more down time I insert a break in my schedule.


  1. How do you did you handle being a patient and a professional in your personal life? 

When I am at work I am focusing on my patient, and I only bring up my personal experiences if my patient asks.


  1. Do you tell your patients what you tell yourself / do you practice what you preach? For the most part! I am committed to helping my patients feel better, and sometimes I spend more than the allotted time for the appointment answering patient’s questions. This can cause me to miss lunch!


  1. Has your condition made you more or less empathetic to those like you? 

MORE empathetic! I have come to understand that some healthcare professionals do not believe fibromyalgia is a real medical condition. They think that we are depressed, or stressed, or just lazy. I even heard one rheumatologist refer to Fibromyalgia as “The F word!” I KNOW fibromyalgia is real because I feel the symptoms (plus there are hundreds of studies indicating that those of us with fibromyalgia have unique physical and biochemical findings). I am passionate about helping validate my patients symptoms and help empower them to get the care they deserve.


  1. How do you research conditions? on your own? drug companies? medical journals? Colleagues? how do you convey this knowledge to patients? 

Every morning I go on a physician's site called Doximity to check what new research has been done on fibromyalgia, I also Google fibromyalgia and get a compendium of articles from various sources about what is happening the field of fibromyalgia and chronic pain. I talk to colleague regularly, I post every Tuesday on my professional FB page (usually sharing new research results or an article about fibromyalgia) and I send out newsletters on a regular basis to my patients updating them on the latest developments in the field.


  1. How do you feel about holistic medicine? what does it mean to you? 

The definition of holistic medicine I like best is that Holistic medicine is a form of healing that considers the whole person -- body, mind, spirit, and emotions -- in the quest for optimal health and wellness. ... In this way, if people have imbalances (physical, emotional, or spiritual) in their lives, it can negatively affect their overall health. This is from WebMD. I use the most natural methods and techniques with the fewest side effects when I treat my patients.


  1. Tell us about a special experience with a patient (uplifting)

Ahh, Stefanie comes to mind. She is a wildlife biologist who developed pain as a child. Her doctors couldn't figure out what was wrong with her. She was having so many migraines and so much pain in her body her doctors told her “well, you are just one of those people with pain.” After 9 months on the guaifenesin protocol she felt a “dramatic decrease” in the pain she was in an increase in energy, so much so that she was able to do more and have the confidence to have a baby, and she did! To see her in the office holding her baby in her arms was so amazing. She said her improvement on guaifenesin “feels like a miracle, it just transformed my life.” There are so many stories like Stefanie’s of symptom improvement on the guaifenesin protocol! I produced a documentary called Fibromyalgia: Getting Our Lives Back--Success Stories on the Guaifenesin Protocol: https://www.youtube.com/watch?v=DtPPoOBeXTM for people who want to learn more.


  1. If you had one message to send out to every chronic illness patient out there what would it be? 

Don’t give up! You are not alone! Keep searching to find your tribe-- supportive healthcare practitioners that are experts in your condition and who are committed to working hard to help you feel better. 

The documentary Fibromyalgia: Getting Our Lives Back—Success Stories on the Guaifenesin Protocol: https://www.youtube.com/watch?v=DtPPoOBeXTM 


Dr. St. Amand’s website: http://www.fibromyalgiatreatment.com/


Dr. St. Amand’s book What Your Doctor May Not Tell You About Fibromyalgia: http://www.fibromyalgiatreatment.com/books-and-dvds.html and https://www.amazon.com/What-Your-Doctor-About-Fibromyalgia/dp/1455502715/ref=pd_lpo_sbs_14_t_0?_encoding=UTF8&psc=1&refRID=0PKW88RSY6AXQDFFF0C1 This is the link to the latest edition


Online Guaifenesin Support Group: http://www.fibromyalgiatreatment.com/online-support-group.html 


Fibromyalgia Facebook Support Group for those on the Guaifenesin Protocol: https://www.facebook.com/groups/fibrofightersonguaifenesin/?epa=SEARCH_BOX


Where to purchase guaifenesin and personal care products that do not block guaifenesin’s action: http://www.fibropharmacy.com/


Websites devoted to selling salicylate free products: https://www.andrearose.com/sensitive-skin-care-basics-s/100.htm and https://www.cleure.com/Default.asp 


Note: It is common to feel intermittently worse during the first 4 months on the protocol. We are here with tips to help you feel better during this time. 




Sex Therapist and Author Interview Melvin Phillips on Sex, Chronic Illness, and Disability

 Today I am interviewing Melvin Phillip a sex therapist about his upcoming book. Sex & Love When You Are Sick  will provide couples with strategies to overcome shame and the sexual limitations they are experiencing due to illness by reclaiming a sex life that works. Couples will learn to acknowledge loss, cope, and build a relationship with the illness. This book will help the couple develop the “new normal” of their partnership."

Comment below if you have any questions you would like to ask Melvin in an upcoming interview.

The Emotional Side of Chronic Illness a Therapist With Primary Immunodeficiency, IBS, alopecia, chronic pain, and PCOS Perspective: Eva from WellaCopia Interviews Jodi Taub

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Summary


Our New Chronic Health Podcast Series!!!!

Health Practitioners with chronic illnesses

For our first episode: Jodi Taub Licensed social worker Interviewed by Eva from Wellacopia representing the EastCoast branch of Invisible Not Broken

  • Dealing with Polar Vortex with chronic illness

  • Specializes in chronic illness mental health

  • Telemedicine

  • "But you don't look sick" aspect of invisible illness

  • Chest ports catheter

  • Invisible Illness Discrimination

  • Mental health and chronic illness

  • The use of online support groups

  • How to cope with chronic illness for children

  • Dating and chronic illness

  • Out of the Invisible Illness Closet

  • Show Notes

    Basic intro questions

    ·      What is your profession? I am a Licensed Clinical Social Worker with a private practice in NYC.

    ·      What is your illness(es)? Are you ready for the list? Here goes: My Main Illness which is the reason for all of my subsequent health issues is Primary Immunodeficiency. This means that my immune system does not function appropriately/and or is missing functioning parts of my immune system. This results in severe, chronic, and hard to treat infections, mainly sinus, pulmonary, gastrointestinal, and skin, but we can always throw in a bladder infection or some other random infection each year.  I receive bi-monthly infusions of Immunoglobulin Therapy, and have a chest port catheter because I often require daily, long term IV antibiotics for weeks or months at a time because I have infected bone in all of my sinuses. I have asthma and bronchiectasis, eczema, allergies, what was initially diagnosed as IBS, than Ulcerative Colitis, and now gastrointestinal issues related to PI, GERD, PCOS, chronic pain due to disk herniation and degenerative disk disease due to a car accident in 2003. I also have acquired some new diagnoses as of late: Hashimoto’s, Raynaud’s Disease, Anemia, and Androgenic Alopecia.

    ·      Where do you work? NYC and on my couch when I am not feeling well.

    ·      Who do you work with? I am very lucky to be able to combine all of my extensive work experiences into my private practice.  Prior to becoming ill, I worked as a therapist in foster care and adoption and in residential centers. Later on, I completed a Post Master’s in School Social Work and was a school social worker(which also focuses on children with disabilities in the school system).  I started my private practice 11.5 years ago. My private practice represents all of my 22 years of direct care experience post college. I work with children, adolescents, and adults. I conduct individual, group, couples and family therapy. In recent years, I have specialized in patients who are coping with the emotional difficulties of living with Chronic Illnesses, which is why I am here. Because of my work within the Chronic Illness community, I am also an expert speaker, and have conducted over 30 lectures across the country for patients and families who are coping with chronic illness, more specifically with PI.

    ·      What makes your approach to care unique (think Wellacopia)-I am really enjoying this time in my career.  In my early years, I was in school forever, and worked really hard to try to hone my clinical skills. I am now at a point that my craft is really natural for me after 20 years.  I think because I am real. I am approachable and informal. There are a lot of myths about who a therapist should and and should not be, and also about what type of personality attributes you should have.  We are an eclectic profession. Community members often ask me for therapy references, and I will often hear, “Do you know of a good therapist?’ I always ask a series of questions to find out who would be the right fit. I always say, “Who would be good therapist for you?”  Therapeutic style, approach, and personality are really important. We all have different personality types. Speaking to someone about your inner emotional world-the most important thing is to feel comfortable with that person. This also translates to finding your own medical care team.  Some people can be a part of a larger health care system, and some individuals will require more specialized care.

        

    Personal Questions:

    ·      How did your illness shape your career? It changed the course of my career.  I have suffered from all of my chronic illness which came from PI my entire life. I just thought that I had a ton of different health care conditions which were not related. When I was 30, the chronic persistent, serious infections really hit, and it changed the course of my life. Completing grad school and post graduate schools, I worked full time while hustling through.  In fact, when I became really ill, I had been working at a school as a school social worker. My body was really shutting down, and I was constantly in the hospital, and having surgeries. The truth was that I could no longer work a traditional 9-5 pm schedule(And at that time in my life I was working 9-9 pm to pay my bills). It was at this time that I had two opposing supervisory job reactions.  My boss at the therapeutic day school was trying to fire me to due my illness, and my supervisor at Catholic Charities wanted to do whatever she could to accomodate my circumstances. My supervisor offered for me to take on a small case load and the flexibility to set my own hours. I could work nights and weekends, and could complete paperwork at home or on a laptop during appointments. I quit the school job, and bulit my private practice while managing a caseload at Catholic Charities. Four months after I quit my school social work job, I was diagnosed with Primary Immunodeficiency, and shortly after began IVIG infusions.


    I learned a ton from this experience.  I could have become consumed by the negative experience with my school boss who was descriminating against me.  I could have really been disappointed for just completing a post master’s in school social work and learning that given that I had immmune system which could not fight off germ’s, I could never work in a school again.  


    On the other hand, I had the opportunity to begin an entrepreneurial adventure as a therapist consultant which lead me to start the private practice. There are always two ways of looking at circumstances, particularly when your journey takes a different path.


    ·            Are you open about your illnesses with your patients? If so, were you always? Yes, I am. In fact, it is an agenda item I highlight during intake.  I let all new patients know that I have a compromised immune system. I explain that if they come in with symptos of a cold or cough, I can become really ill.  As an alternative, we can teleconference or reschedule for another date. This is another example of how personal modifications allow me to be gainfully employed.


    From a personal perspective, I took me sometime, as it does with most people to come to terms with illness both professionally and personally. From a professional perspective, I wanted to maintain my practice and all of the years of work experience in my practice.  In addition, I wanted some space from my illness professionally. Although, I began volunteeing with the Immune Deficiency Foundation from the onset of my illness as a guest lecturer and conducting coping skills groups nationally, I still was not seeing patients privately in my practice. Because having an impaired immmune system, impacts almost every system in my body, I have a ton of specialists.  There doctors started sending patients to me who had a variety of different health care conditions, including but not limited to Chrone’s and Colitis, IBS, Lupus, Cancer, Rheumatoid Arthritis, Fybro, EDS, Lyme Disease, Allergies and Asthma, MS, Rare Disease, and PCOD just to name a few. My immunologist had been encouraging me for years to see PI patients in my practice. And now as we have increased PI patient diagnosis, I see PI patients, as well.  


    Personally-and I talk about this with patients all the time, when to tell individuals was on a case by case basis.  I realized early on how often patients with Chronic Illness can be descriminated against. I have had people sneer while wearing masks on planes, or many friends and family members who did not validate or understand my experience. If all I had to do was add some more Kale to my diet, I would have long ago been cured! As many chronic illness patients have experienced, I have had others judge make judgements about my capabilities.  Just because I attended work that day does not mean that I will be exhausted and could participate in a recreational activity at night. I talk about this a lot with my patients-My illness now impacts every aspect of my life, from work to how I spend my free time, to dating. Dating can be challenging. You have to establish your own boundaries and determine when it is appropriate to tell someone and WHO is appropriate. If you tell someone before there is an attachment, and there is a connection, it may be too much.  There are significant others who I told right away because we had a conection, and other’s whom I told later on, or even never told.


    ·      What are you most passionate about in regarda to your work? Working with patients who have rare illnesses and chronic illnesses because I get it! This is why I chose to specialize in Chronic Illness.  For many individuals with Invisible Chronic Illnesses, we experience descrimination. People can say really cruel things, and can make assumptions when they don’t understand how your disease manifests itself.  For most people, illness has an onset/recovery model. This means that their is an onset of symptoms, you get diagnosed, and than you recover. This is the model for most short term contagious illnesses such as colds and the flu. People can also recognize some physical disabilities such as cancer, such as someone’s baldness. Most people can’t identify chronic, invisible illlnesses. When people say to me, “You don’t look sick,” in return, I ask, “What does an infection look like?” This puts us in a very difficult predicament. This means that is was likely that it took many years of suffering before you were diagnosed.  Specifially, PI is now up to 15.5 years from onset of symptoms to diagnosis. This means that there was a lot of collatoral damage along the way.


    ·      How do you handle flares while at work? Because I have so many health care conditions, there is usually some sort of health issue which I am managing daily.  I practice what I preach, and I make modications to accomodate my health care lifestyle. I typically see patients in the morning, and leave a chunk of time open for paperwork, so that I have the flexibility to attend my doctor’s appointments when necessary.  You saw an example of that-you came to my office while we reviewed potential topics for the podcast. I asked you if it was ok, but I lubed up and ran my IV antibiotic while you were there.

    ·      How do you handle being a practitioner, patient and your personal life? Balance.  I really try to maintain the same balanced work/medical/life balance which I recommend to my patients.  If I am not feeling well, I slow down. I say no, a lot. I think its important to set expectations, and if I have too much going on, I will priortize what is necssary.  

    ·      Do you tell your patients what you tell yourself/do you practice what you preach?

    ·      Has your condition made you less or more empathetic to those like you?

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    ·      How do you feel about holistic medicine? What does it mean to you? I feel that a collaborative approach is important.  I work with my patient’s physicians, psychiatric nurse practioners, psychiatrists, and other care specialists to coordinate care.

    ·      Tell us about a special experience with a patients (uplifting)

    I have a PI patient who had been recently diagnosed with PI prior to college.  She flew cross country, and it was really difficult to adjust to college and what this illness would mean for her.  Her tranistion wad difficult. She was able to move from feelings of despair and feeling overwhelmed to a well adjusted college students.  That’s why I do this. I know how hard it can be and I want to make this easier.

    ·      If you had one message to send out to every chronic illness patient out there, what would it be? Please don’t loose hope.  One of the most difficult parts of living with chronic illnesses is that it can be isolating, both physically and emotionally.  It is inherent to managing disease the time spent on your health or feeling ill can take you away from other things in your life.  It is really important to have community. There are two types of community: Your personal medical care community and your disease specific peer community.  Your community could be friends, family members, significant others, who help in different ways. I have friends whom I can talk to on the phone, and others who will pick me up from appointments and surgical procedures.  Different people can be helpful in different ways. I also encourage you to connect with disease specific peers. We now live in a time when there are all sort of facebook groups. It is really important to connect with others who just get it.


    We are having varying degrees of abilities, so what works for one person may not work for someone else. You have to find a way to have some joy in your life and on your terms. None of us chose to be sick.  We did not have a choice in our genetics. However, we do have a choice in how we live and thrive despite living with our lllnesses.