Diagnosis, Education and Treatment
Coordination for Adults and Children
1501 Clement St. | San Francisco CA 94118
10 Millwood St., #5 | Mill Valley, CA 94941 | Map & Directions
Dear Lady Gaga,
First of all, let me say how sorry I am that you are experiencing severe chronic pain. I have fibromyalgia and am a doctor for children and adults with fibromyalgia, so I know what it feels like. My fatigue and pain was so severe that I had to retire from medicine for a while until I found treatments that helped me significantly. Here is what I think you should know:
THANK YOU for your amazing documentary! Fibromyalgia is so common, but because it is an “invisible” illness (and probably because it affects mostly women), there is hardly any money going into research and support. I made a little documentary also! It describes my story and my patients’ stories. Check it out at this link. If you want help from a strong independent fibromyalgia consultant, give me a call.
Melissa Congdon MD 415-927-0600
Little did I know how profound a Rosen Bodywork Session with Theresa Garcia would be–after all it just felt like a very gentle massage session. But in the hours following I felt exactly like I do after an acupuncture session–like my body (and mind) were being reorganized. I felt tired and spacey in the hours after the session, but the next day I felt so wonderful. I was relaxed, my mind was clear, my muscles were less tense, and I had great energy. So what had happened during my Rosen session?
Listen to Theresa explain; “My work is all about Embodied Presence. I am a CAMTC Somatic Therapist and passionately believe that unconscious muscle tension is where our deepest attitudes and beliefs live and hide. I use Rosen Method Bodywork sessions and Rosen Method Movement classes to help you connect with new possibilities for living in your fullness.
The 60 minute Rosen Method Bodywork Session is designed for people who want an integrated way of getting both relaxation and inner-connection with themselves. It’s for people looking for a different avenue to personal growth that includes their whole self.
It is a private, one-one bodywork session that some people say looks like massage and feels like psychotherapy, sort of like psychotherapy for the body (but I’m not a psychotherapist and my work is not a substitute for psychotherapy, but a great complement to it). Clients leave feeling deeply relaxed, and often connected to elements of themselves they didn’t know needed connecting. Sometimes the results are as simple as relaxation, other times the results are profound realizations of how they live in their lives.
When you are lying on my massage table, there is virtually nothing for your muscles to do. So, we might ask, what are you doing in there with all those tight muscles? What are you working so hard on, while the table is holding you up? What is so important that you are giving your precious energy to it without conscious purpose? Plenty! Unconscious muscle tension is where our deepest attitudes and beliefs live and hide. This is fertile ground for gaining self-awareness, connecting with our modes of self-preservation, and stepping into new possibilities for living in our fullness now.
My belief, my philosophy, my passion is that extra effort in our bodies translates to extra effort in our lives. When we connect with chronic muscle tension, chronic ways of holding ourselves together that were necessary at one time, then our nervous systems can come to a new place and ask ‘do I need that’ and let go of old habits and beliefs that make life a lot harder than it needs to be. My work is all about allowing ease in your body as a path toward more ease in your life. It’s very much about cultivating embodied awareness, honoring our vulnerability, and giving space to our deepest truth. All through the body.”
“I’ve tried many different types of bodywork, but nothing compares to The Rosen Method. I have had profound emotional breakthroughs during a session. I usually feel lighter, more at peace and about two inches taller every time I get off the table. I can’t say enough positive things about Theresa. She is kind, attentive, receptive, highly intuitive, very knowledgeable about the workings of the body, and extremely gifted at what she does”. KM in SF
Call me at 415-812-9917 or Email me at firstname.lastname@example.org to schedule a session.
Invest in your vitality with an Embodied Presence session: $150
As a person with fibromyalgia and a physician treating fibromyalgia patients I am well aware of the disrupted sleep pattern most of us have and attuned to this topic. The results of a 2014 study in the Journal of Clinical Neurophysiology surprised me and upon review have changed my patient recommendations.
Dr. Victor Rosenfeld and his team analyzed 385 people (133 with fibromyalgia) by conducting comprehensive overnight sleep studies. The team found that 45% of people with fibromyalgia in the study had obstructive sleep apnea (OSA) – twice the rate of obstructive sleep apnea (OSA) found in the general population. Many of the people with fibromyalgia found to have OSA did not have the usual risk factors of obesity or snoring. Simply having fibromyalgia was a risk factor for obstructive sleep apnea.
After reviewing and considering this study, I began to recommend that all my new fibromyalgia patients 30 years of age and over ask their primary care doctors to order an overnight sleep study. A couple of my patients noted that their primary care physicians grumbled while writing the prescription because they were not used to thinking that OSA could occur in young fibromyalgics without the typical risk factors of obesity or snoring, but it turns out that 50% of my patients do indeed have obstructive sleep apnea. I am now talking to my existing patients 30 years of age and older about the importance of having an up to date sleep study.
Why is it important to treat OSA? The Mayo Clinic notes, “Sudden drops in blood oxygen levels that occur during sleep apnea increase blood pressure and strain the cardiovascular system. The more severe the obstructive sleep apnea the greater the risk of coronary artery disease, heart attack, heart failure (perhaps men only) and stroke.” Some fibromyalgia patients with OSA who start getting adequate oxygen during sleep note they have less fatigue, mental fog and pain during the day.
Much has changed in the past few years: overnight sleep study centers are more comfortable and many patients find they often sleep tolerably well during the study. No longer is a huge uncomfortable oxygen mask the only treatment for OSA. An overnight sleep study can determine if you have sleep disordered breathing treatable by oral appliances, nighttime oxygen delivery or other methods. If you have fibromyalgia you are at higher risk for OSA and properly treating it could improve your health and the way you feel.
This article was published in the April 2015 edition of the Fibromyalgia Treatment Forum: http://www.fibromyalgiatreatment.com/newsletter.html
I had just finished seeing my last fibromyalgia patient of the morning, and I was getting chicken salad out of my lunch bag and had time to take a deep breath and check in with myself. Ahh, my body felt great–my muscles moved easily and I didn’t feel pain anywhere. I had plenty of energy, my mind was clear, and looked forward to the afternoon and the weekend.
I had hit the “sweet spot,” the spot where my system was in balance. How did I, someone with fibromyalgia, achieve this balance? I try to practice what I preach: in order to have the best chance of recovery from fibromyalgia symptoms I find that I and my patients need to:
1. eat foods that help you feel well–we are what we eat, it is that simple.
2. get consistent aerobic exercise–we all need at least 20 minutes of aerobic exercise 4 times a week to feel well. Put comfortable shoes on and get moving. You will build new mitochondria over time which will give you more energy and help you feel better.
3. clear well on the guaifenesin protocol–this treatment has proved so successful for me and many of my patients.
Do I feel wonderful all day every day? No, but I feel a heck of a lot better now than I felt 7 years ago when I was first diagnosed. Do your best to follow the 3 guidelines to give yourself the best chance to hit your sweet spot. This is my wish for you.
Even though I had a vision in my head about what I wanted the fibromyalgia film be I had no idea how to get there. How could I help my patients communicate what they had been though? During a patient appointment I ask pointed direct questions (what is the severity of your pain? How is your energy? Has your fibrofog eased at all?) These questions are designed to give me the information needed to quickly and accurately assess how the patient is doing before I exam them and then make an assessment and plan. But making a good movie is different than structuring a good office visit. Luckily filmmaker Tylor Norwood had it all figured out.
“Ask your patients to tell you their story” Tylor said. “Sit in a chair across from them and ask them and listen. I will film it all.” It was that simple but that profound. This was not a situation where the doctor controlled the visit, this was the patient’s chance to describe what was important in their healing journey: to reveal the struggles to get diagnosed, the disappointment when medications and treatments failed to work, and the joy when the pain and fatigue started to ease on the guaifenesin protocol. I had known most of these patients for over a year and yet I learned things about their journeys that I had never known–important and profound things. All I had to do was listen.
I love Dr. Clauw’s article. It is a thoughtful and comprehensive review of fibromyalgia. However, I must take issue with the following:
1. Dr. Clauw states that “rarely” it may be “ill advised” to “provide a diagnosis (of fibromyalgia) for a child or adolescent who might use a fibromyalgia diagnosis as a reason to restrict activities.” WHAT? Firstly, I think it is never OK to withhold a diagnosis of fibromyalgia from anyone. Secondly, it is my job as a fibromyalgia consultant to help fibromyalgia patients of ALL AGES understand the importance of consistent aerobic exercise in reducing symptoms, and I would never let a patient’s dislike of exercise keep me from being honest about a diagnosis. I teach all patients how to begin an exercise program so they can minimize pain and maximize the benefits of exercise (see blog on the “exercise envelope” 8/5/14). Dr. Clauw is not the only specialist who feels this way, and sadly many children and adolescents are denied early treatment because of it.
2. Dr. Clauw states; “Usually, the physical exam is unremarkable in patients with fibromyalgia.” Not in my experience. I have examined hundreds of fibromyalgia patients and they all have a distinct pattern of muscle spasm on exam. If a massage therapist ever said “you have the tightest shoulder muscles ever– your muscles feel like rocks,” then you know what I mean. Fibromyalgia expert Dr. R. Paul St. Amand taught me how to carefully examine the muscles, tendons and ligaments of patients to check for muscle spasm and nodules. I do not expect all doctors to travel to see Dr. St. Amand to learn how to more accurately diagnose fibromyalgia (although that would be wonderful), it it is clear to me that fibromyalgia patients have a “remarkable” exam. I am amazed by how many of my new patients tell me that most of their doctors do not even touch them.
3. I am worried that Dr. Clauw’s recommendations for treating “Ms P” will not be successful. I agree that she should limit her to of cyclobenzaprine to 5-10mg at bedtime (although we don’t know if she is already doing this). Dr. Clauw recommends she take her dose of pregabalin at bedtime, which she states she “usually” already does. Next he recommends she add a serotonin norepinephrine reuptake inhibitor. She is already on TEN prescription medications! I would love to see Dr. Clauw discuss a plan to perhaps start a new medication while decreasing and stopping others. Many of my new patients are on a dozen drugs–yes they can reduce symptoms (usually only temporarily), but they have side effects and they can interact with each other! I totally agree with Dr. Clauw that helping “Ms P” understand how to use non-pharmacological therapies to help treat her fibromyalgia is vitally important.
4. One more issue in closing: Dr. Clauw states “effective treatment for fibromyalgia is now possible.” Yes, I believe that with more fibromyalgia research and more excellent articles on fibromyalgia diagnosis and treatment practitioners will better understand fibromyalgia and its effective treatments, but I think it is important to recognize those practitioners who have ALREADY been successfully treating fibromyalgia for years! Many thanks to them–including Dr. Daniel Clauw.
You can access the article here: http://jama.jamanetwork.com/article.aspx?articleid=1860480
Many new fibromyalgia patients tell me; “My doctor told me to exercise, but every time I go to the gym or work out at home I either wind up so exhausted I can’t move for days, or in so much pain I NEVER want to think about exercise again!”
It’s true that consistent aerobic exercise is a critically necessary part of your recovery from fibromyalgia. Consistent aerobic exercise increases energy, decreases pain (often as well or better than pain medications), improves sleep and mood, and can even improve cognitive function. In fact, most of us fibromyalgia specialists know that if our patients do not exercise they will not feel better, no matter what other therapies they are on.
Many doctors recommend fibromyalgia patients follow a “graduated exercise program” where they follow a prescribed exercise regimen and increase the amount they exercise every week even if they are exhausted and sore. Instead I have found by adapting the concept of the “energy envelope” coined by Leonard Jason PhD et al (see link below) to my fibromyalgia patients I can often get them exercising and feeling better. Dr. Peter Rowe recommends this approach for pediatric chronic fatigue patients, but I have found it works well for kids and adults with fibromyalgia.
Here’s how to do it: you always need to stay within the boundaries of your energy level–your “envelope.” If you are very symptomatic then your energy envelop is quite thin. You need to figure out how much exercise you CAN do without bursting through the envelope and crashing. So you walk for 5 minutes every other day for the first week. By consistently doing the exercise that does not stress your body, you stay within the envelope and actually expand it so over time you can walk for 6 minutes then 7 minutes, then 8 minutes in a session–the goal being to get at least 20 minutes of aerobic exercise at least 4 times a week. Your energy envelope has then expanded so that has lots of room inside! You slowly and gently get in shape by adding about a minute of time to your routine every week.
You can read the article here:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3596172/
Do you want to get all the benefits of exercise? Start by doing what you can do on a regular basis (4 times a week) and then slowly add a bit more time every week. Swim, walk, bike–your choice. Give yourself the benefits of exercise PLUS enjoy active time with family and friends. See you on the trail!
On April 16, 2014 the Journal of the American Medical Association published “Fibromyalgia: A Clinical Review” by Daniel Clauw MD.
What I love about the article:
1. The fact that JAMA published it at all–the last time JAMA published an article on Fibromyalgia was in 2009! The review article notes that fibromyalgia is common (2% to 8% of the population) so it’s about time JAMA published an article about a condition may affect 16 million or so people in the US alone (using 5% of the population).
2. The pain we are feeling is real. Dr. Clauw notes that studies show we “feel more pain than would normally be expected based on the degree of nociceptive input.” That’s right. We feel it. We are not making it up. Just because people without fibromyalgia do not feel pain at lower thresholds doesn’t mean WE don’t actually feel it. Our pain sensations are real.
3. Don’t withhold the diagnosis from us. Dr. Clauw states “some believe that a label of fibromyalgia may harm patients. However, studies suggest that the opposite is true: a diagnosis of fibromyalgia can provide substantial relief for patients.” Spot on. First we need a diagnosis. Only then we can figure out how to get better.
4. Kids have fibromyalgia too! Dr. Clauw writes; “Fibromyalgia can develop at any age; including childhood.” So true. I treat many children with fibromyalgia, and most of the time they respond to treatment very well and very quickly. Now if only pediatric rheumatologists would get more comfortable making the diagnosis then thousands of children could get treatment sooner, sparing them months to years of worsening symptoms.
5. Your doctor’s toolbox better contain more than just pain meds. Dr. Clauw states; “If clinicians treat fibromyalgia or other chronic pain conditions with drugs alone, they will fail.” So true.
Stay tuned. Next week my blog will detail what I do NOT like about this article.
Guest blogger May Mechem Congdon eloquently summarized her impressions of the NY Times “Health For Tomorrow” Conference in her June 3rd blog post on this site. Here are my impressions:
–I believe Toby Cosgrove MD, CEO of the Cleveland Clinic, has an excellent grasp of what needs to be done to improve health care in the US (no wonder the White House is considering him to run the VA Hospitals!). He believes there are 2 ways to lower the overall costs of health care: 1)more efficient delivery of care–a few large hospitals in every state to eliminate the cost of the building and upkeep of so many hospital buildings with small outpatient centers providing support and 2)less disease therefore less need for patients to see doctors. I agree with both of his points. If the most talented specialists were in a few centralized locations, there would be a greater chance of getting a correct diagnosis sooner (i.e. a fibromyalgia diagnosis!!) and getting the proper treatment. Of course we want less disease, and “wellness” has become such a catchword–but it is a reminder to all of us that we need to do all we can to FEEL well enough to eat right, exercise and be in charge of our own health and “wellness.” Finding the healthiest, most effective treatments is the key for individual health and wellness.
–Genome sequencing is already being used in some cancer centers to determine what treatments work best for for an individual’s cancer. I guess the cost of sequencing is actually quite low–but charges to the patient may not be (unfortunately just like the cost of medications).
–We all know that drugs and healthcare in general cost more in the US vs other countries, but did you know that the US pays nurses more than any other country? Most of the nurses I have worked with are AWESOME and deserve a high level of pay. The US pays nurses 4 times more than Germany does. Does this translate into better care? William Haseltine (who has been a professor at the Harvard Medical School and the Harvard School of Public Health) says studies show it does translate into better care.
–There is a push for patients to be able to access more data regarding what hospitals charge for services, and many devices and apps are being developed to provide more data on sleep, heart rate, steps walked during the day, etc. I think it is great to have access to this information, but I caution readers to understand that just because there is an app for something doesn’t mean the information you are getting is meaningful. I would like to see studies done on how accurately apps measure what they say they are measuring.
–I agree with May Mechem Congdon that networking during the lunch hour was a wonderful way to educate people about fibromyalgia and its various treatments. I even was able to examine/map someone who thought she might have fibromyalgia (her exam showed that she does). This diagnosis will hopefully propel her to research various treatments for fibromyalgia. She even asked me if I needed an office nurse–I think she would be a great addition to my office, promoting “wellness” in fibromyalgia patients.
The New York Times sponsored a medical conference this past Thursday called “Health for Tomorrow,” bringing together prominent leaders in the medical field, including physicians and policymakers. 300 guests were invited from around the country to address “medicine, research, policy, and wellness,” and many of the speakers explored the economic ramifications of the recent Affordable Care Act in California and nationwide.
Curious as to how many young people would be there, imagining that I would be the only one there under 20 (I’m the 19-year-old daughter of a physician, considering a career in medicine later in my life), I was pleasantly surprised to find a wide variety of ages, demographics, and specialties at the conference. The New York Times was not just a sponsor of this event: it lent its name, but also nominated a few excellent moderators and contributors to spur discussion. Elisabeth Rosenthal, trained as a medical doctor but has recently focusing on the cost of health care for the New York Times, moderated many events and skillfully used her experience with the topic to draw out engaging conversations with her guests. Quentin Hardy, the deputy technology editor for the New York Times, also did a great job moderating. He focused on the pieces regarding Big Data, especially how new developments in technology can improve the health field.
Throughout the conference, an action-packed day beginning at 8:30 am and concluding at around 5 pm, what I found most notable was the engagement of the audience. After each talk, two microphones were set out on either side of the stage and audience members were encouraged to come forward and ask questions. Many did, and we were able to hear from an oncology nurse who is also involved in big data development in a tech startup, a specialist in cystic fibrosis, and the CEO of a hospital, to name a few. These guests were equally qualified to be on stage telling us about their work and its application to the future of medicine. They asked questions that applied to their work, but also drew in the audience and engaged us in the larger significance of these issues in the world. Because the audience was able to participate in the discussion, it became a community effort as we were united by the common goal to help healthcare help more people. Unfortunately, the insightful questions took longer than expected, so we were cut off after lunch. Guests were still encouraged to approach speakers during breaks to continue these important conversations and make valuable connections.
These breaks were also a great way for audience members to get to know each other and learn new things about diseases, business economics, and tech startups (and many more) from the people who know them best. During lunch, we met a gynecology nurse who was interested in Fibromyalgia, and my mother was able to teach her about the disease. My mother and I also provided human examples of the condition to curious guests, helping to dispel the stereotypes about Fibromyalgia by showing that a young person can be healthy AND have this condition, and that my mother was once very sick and is now highly functional. In that way, we both helped educate people we met, making connections instead of relying on clinical data or research papers. This person-to-person networking allowed people with very little experience with Fibromyalgia, but an engagement with medicine or healthcare policy, to gain a realistic understanding of the condition and its treatment options.