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

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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:

  1. 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!).
  2. 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.
  3. 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.
  4. 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 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 415-927-0600

Disbelief

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I’m back to blogging after taking month or so off preparing hour long talks on fibromyalgia and chronic fatigue syndrome for doctor groups at our local hospital (one talk for the pediatricians, one talk for the Ob-Gyns). The talks took alot alot alot of preparation on my part (I wanted what I said to be compelling and interesting). I the doctors who attended were very interested in learning how they can more easily recognize a patient with FM/CFS. And after both talks I was approached by doctors who knew they themselves had the illness, but had never done anything about it. This gave me the opportunity to let them know I could care for them, with education and treatment options.

What I don’t understand are doctors that see FM/CFS and still think it is does not exist as a syndrome, and that the symptoms are all in our heads. The hard scientific data is compelling (I will post that next), and you would think our symptoms would be compelling as well. Do they think we are all so crazy we make our symptoms up? I know that anxiety and depression can be part of the syndrome complex, but they are with many other syndromes and diseases. Besides, if I was going to “make up” symptoms, I think I could be A LOT more creative–the common symptoms of fibromyalgia are no fun.

I know one of the stumbling blocks is the lack of a blood test to diagnose fibromyalgia. Dr. Charles Argoff, Neurologist at Albany Medical College and Director of the Comprehensive Pain Center says “clinicians should be accustomed to being faced with managing conditions for which absolute knowledge regarding the conditions and there etiology and pathophysiology is not yet known. In fact, this is true for most medical conditions we encounter including many non pain conditions such as hypertension, various cancers, and diabetes.”

Those of us with fibromyalgia and CFS need to say strong. I feel confident that in time our syndrome will be recognized as a disease, and we will start to get the respect we deserve. Until then, we need to stay organized and find a compassionate and informed doctor.

During this time of thanksgiving, let’s be thankful for “wild passionate love”

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Dr. Sean Mackey, chief of Stanford’s Division of Pain Management, is senior author of a study that found that in the early stages of love “pain messages were reduced in intensity before they even reached the brain,” and that brain MRIs showed that brain areas activated were exactly the same areas activated when pain relieving drugs were used.

Can we bottle those heady fleeting feelings of early love? Probably not, and it is natural that the dizzy, passionate feelings of new love mellow with time. But the researchers are looking closely at loving relationships, and hope to find out more about how to help the brain fight pain with love. “Holding hands does it,” and so might “vividly recalling their happiest memories with their loved one.”

During this Thanksgiving week, let’s try to recall the feelings of love we might have (or have had) with a parent, spouse, child or friend. It just might make us feel a little better.

Happy Thanksgiving everyone!

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2010/11/22/DDS11GA5TG.DTL

A Big Shout Out

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I am currently preparing a talk on Fibromyalgia and Chronic Fatigue Syndrome to be presented at Pediatric Grand Rounds (a weekly meeting of all interested pediatrics and other health professionals) at our local hospital. I am starting with basic information about fibromyalgia; how our brain processes pain differently than others, how prevalent it is, what to look for during office visits, and common treatments and recovery rates.

Putting all of this together has made me realize how poorly understood the illness really is. I only knew the tip of the iceberg about the syndrome until I was diagnosed and threw my heart and soul into learning all I could about every aspect of fibromyalgia. Now that I know tons more, I have learned that there is tons more we need to know to understand the syndrome.

So I would like to give a big shout out of THANKS! to my family and friends who continue to support me through this illness, even though I know that they probably don’t understand more than the tip of the iceberg. But the agreeing to provide seemingly endless back rubs, the interest and concern, as well as just being there has meant the world to me. I am so grateful, and wish that all patients with a chronic illness had such great support.

All of you lift my spirits and make it easier to deal with this complicated long term illness. If I am feeling better, I have more to give to my patients.

Thanks guys!  XOXO