Lady Gaga Gets People Talking and Melissa Congdon, MD Blogging on Her Helpful Website

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Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 1917
User offline. Last seen 3 hours 53 min ago.

Celebrities help more than almost anything I know in helping people to "connect" with a condition.  "My father died of Lewy bodies disease, that's what Robin Williams was found to have on autopsy but was, like so many, mis-diagnosed with Parkinsons, which perhaps had a lot to do with how his life ended as it did" I will say to people and see them 'connect' when I mention someone they "know" who they heard about having something, in this case Lewy bodies.  Or, "My mother, I believe, was missed diagnosed with Ehlers-Danlos Syndrome and the vascular type is what I suspect, they often die young and of big breaks of blood vessels -- ironically she used to watch comedian John Ritter on reruns of Three's Company on late-night television. You may recall he died suddenly, unexpectedly and not knowing he had what he had -- missed diagnosed, as so many are.  Myself included, officially, I'm going by self suspected diagnosis I call it." Grin goes with it, maybe a wink.

Lady Gaga having come out with a documentary about her having fibromyalgia is very interesting from my standpoint.  For fibromyaligia awareness, it gets people's interest up about it more than usual, or again.  In the case of Lady Gaga and what I believe to be the case about her role in the System headed by the "Known Liars", as a few of us recently got together via Robin Goffe of Utah (medical historian and autism activist) to label them with a new label that doesn't come with strings attached.  Cabal, shadow rulers are a couple of the other terms made up by other groups such as those working for Gaia TV (dot com). 

No matter how you look it it, in my opinion, it bears some investigation if someone as well known as Lady Gaga comes out with a documentary.  Is the information in it misleading or accurate? I've actually not yet delved into what is being written about Lady Gaga having fibromyalgia, nor the documentary I learned about was included in this recent media blitz I've seen on Facebook.  But I opted to 'go in' when I saw someone post about THIS blog topic at THIS doctor's website, based on the title and also the comments of those in that Facebook fibromyalgia group area. 

I can tell that my suspicions that the masses were to be somewhat mislead by what Lady Gaga provided out through her PR / marketing efforts with this story.  I'm pleased to see a doctor using the opportunity to help correct the information and have it leading people the way SHE leads people.  What she says is more in line with what I believe is valid, and correct. 

I admittedly have been on the fence about guaifenesin protocol, but did find it helpful in the past when I was at a certain point.  I just switched to other things eventually, and only felt I should be taking a certain amount of things.  Not just from a cost to procure standpoint, either, but that is a factor.  It used to be prescribed and my copay of $20 a month paid for a bunch I'd need for the month.  Then it was OTC and it was 4x that. 

So, here's the link, please take it! 

melissacongdonmd.com/2017/09/letter-to-lady-gaga-what-you-need-to-know-about-fibromyalgia-from-a-doctor-with-fibromyalgia/

 

Letter to Lady Gaga–What You Need to Know about Fibromyalgia from a Doctor with Fibromyalgia

SEPTEMBER 25, 2017 BY MELISSA CONGDON, MD, FAAP

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 were 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:

You WERE born this way! There is a strong genetic component to fibromyalgia. Sure, the intense physical nature of your work puts extra stress on your body, but you did not CAUSE your fibromyalgia. It is my belief that one must have the underlying genetic predisposition to fibromyalgia–otherwise, EVERY superstar entertainer would have fibromyalgia (even Madonna!).

Fibromyalgia is NOT all in your head -– sure, there is evidence that some of our pain is due to “central sensitization,” where our brain amplifies the pain, but fibromyalgia is much more than that. Fibromyalgia can affect every organ in your body–you can have intestinal symptoms, brain symptoms (anxiety, panic attacks, dizziness), skin symptoms, etc. Your physical exam is NOT normal. If your doctors examined you carefully (and I am not talking about the inaccurate tender point exam here), they would find that you have a pattern of muscle spasm and swollen muscles, tendons, and ligaments throughout your body. These press on nerves, causing pain.

YOU are in charge of your body and the treatments you choose -– there are SO MANY treatments out there, you will know with time what works best for you. (For me, it has been the guaifenesin protocol, acupuncture, exercise, myofascial release, and my spiritual practice.) Often times body work and trigger point injections are only a temporary fix, but a temporary fix while you are searching for treatment with more long-lasting benefits is fine!

Aim to feel GREAT, not just good. In fact, this is a good question to ask fibromyalgia doctors: “What percentage of your patients are having some great days after they follow your treatment protocol?” Oh -- I almost forgot -– everyone with fibromyalgia develops osteoarthritis over time, and the guaifenesin protocol STOPS the progression of osteoarthritis -– something that might be super important to you with your hip issues and the intense physical nature of your performances.

I can tell by your Twitter feed that you have already encountered the people who believe that fibromyalgia is not real, or that we are just being overdramatic (and since 75% of us are women, we’re up against gender stereotypes as well).  You and I know this couldn’t be farther from the truth. We just want to be able to do our jobs and pursue our passion without chronic debilitating pain.

Your true friends will stick with you, plus there are some seriously awesome men and women with fibromyalgia who will support you in your quest to return to good health. You have already done the first most important thing: OWNING your illness.

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

Area code 415 Prefix 927  then last four numbers in phone number are -0600  (and this is needed due to robot computers snagging phone numbers, she has it the usual way on her website but I didn't want to have Lumigrate cause her any problems. ...) 

Take the link, leave a comment at her website, many have.  Look around the information she provides, and take action if something inspires you to do so. I watched her video at the link she provides and looked all around and found a lot of interesting information and feel that this is a website and provider I want YOUsers of Lumigrate to know about, utilize and interact with if you feel it's for YOU! 

Live and learn. Learn and Live Better! ~ Mardy

Again, the link: 

melissacongdonmd.com/2017/09/letter-to-lady-gaga-what-you-need-to-know-about-fibromyalgia-from-a-doctor-with-fibromyalgia/

P.S. -- I VERY MUCH liked the part in her video about the 40% who have the blood sugar issue.  That is where I was initially found to have issues, in my teens.  I was actually complaining of things that should have gotten me looked at for POTS and vascular Ehlers-Danlos Syndrome which to this day was never 'picked up on'.  I learned of EDS via good places to be learning on Facebook, in 2014.  Thanks to ALL who contribute to the Internet having the best tools for the consumer to access of all time.  I'm doing my part, thank you very much if you are supporting my efforts. 



 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

This forum is provided to allow members of Lumigrate to share information and ideas. Any recommendations made by forum members regarding medical treatments, medications, or procedures are not endorsed by Lumigrate or practitioners who serve as Lumigrate's medical experts.

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