Subscribe to RSS feed

Feb
01

Disbelief

by admin

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.

Tags: , , , ,

Leave comment

Jan
25

Seeking Improved Balance

by admin

In the past 2 months it seemed like, more than ever, I was inundated with interesting ideas in magazines and newspapers on how to improve my health, and therefore feel better. The fact that I ate every holiday treat that passed my way could have made me more aware of the possibilities to lead a more balanced  life, and therefore probably helped those articles jump out at me. Face it, we all should eat better, exercise more, do more Kegels (ladies!).

But what motivates people to lead healthier lives? I know that fear is a big motivator, but for me, I am motivated by interest and capability.

I am interested in meditation and Ti Chi to see if it really can make me more calm and focused.

As my symptoms of fibromyalgia fade away with treatment, I am capable of more exercise (and different forms of exercise), and I would LOVE to get in better shape. The fact that I am stronger and recover more quickly from a workout opens up worlds of  possibilities. I am having fun sifting through the various choices of exercise to plan a weekly routine.

Who knows, this summer you might see me on a dance floor at a club. I will be the one dancing into the night, looking calm and focused.

Have fun thinking about how you could feel better.

Tags: , ,

Leave comment

Nov
30

Not Everything is Fibromyalgia

by admin

“Not everything is Fibromyalgia” is a common response from the group leaders on the guaifenesin on-line support group when people on the protocol write in because they are worried about new and concerning symptoms. Even though the symptoms of fibromyalgia can be varied and severe, it is very important for all of us to remember that some symptoms could be a sign of some other illness or condition.

Even though it may not be easy, we need to listen to our doctors when they tell us it’s time for those tests to help detect other problems early. I am talking about getting those mammograms, bone density tests, and colonoscopies. I have been dreading a colonoscopy for years, because I have sensitive intestines, but with the support of my internist and gastroenterologist, I feel comfortable enough to proceed. The prep will just be one uncomfortable day–those of use with fibromyalgia have weathered plenty of those. It’s time to just do it–the benefits truly outweigh the costs.

You are too important to everyone around you to leave this earth early because a condition that could have been caught early was missed. Fibromyalgia may seem like it can cause all the symptoms in the world, but diseases can sneak up on us. Get screened. I wonder if they have any new flavors of Jello?

Tags:

Leave comment

Nov
22

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

by admin

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

Tags: ,

Leave comment

Nov
16

Running Down a Dream (apologies to Tom Petty)

by admin

I really miss running. I don’t mean running marathons, or sprinting to win races. I miss the ability to lace up my running shoes, go out for a leisurely 3 mile run on a beautiful day, and feel healthy and strong afterward. As my fibromyalgia worsened, my neck and shoulder pain began to act up so that running would cause intense migraines for days. Now I look at people running, and am really really jealous.

As my fibromyalgia is improving, I have a dream of running again. I got a referral from my doctor to see a physical therapist who I heard does great work with neck and shoulder pain. And I have started to sort of jog/shuffle about 1/4 of a mile once a week or so. My neck and shoulders get sore, but so far, no migraines. I am a long way from running 3 miles (or even physically doing something that could be called “running”), but I am on my way.

Fibromyalgia robs us of so many dreams, so many of our simple pleasures. I am improving every month, and that is a joy in itself, but I need to think about what I can do to get more of my old life back.

What are the things you miss the most about being healthy? Think about what you would need to do to “run down” your dream.

Tags:

Leave comment

Nov
09

Brain Over Pain?

by admin

I just finished reading a wonderful book by Jill Bolte Taylor, PhD, entitled My Stroke of Insight. Jill is a neuroanatomist who had a massive left hemisphere stroke. She stayed conscious during the stroke and due to her training, is able to brilliantly describe what was happening inside her brain during the evolution of the stroke. Her recovery was long and arduous, but the book chronicles the many insights she gaining into the working of her brain, and the way she now views the world. When faced with a choice, she makes a conscious decision to look on the bright side, and lives each day joyfully.

What she says about pain makes me think. Jill writes “physical pain in a physiological phenomenon that is specifically designed to alert our brain that tissue damage has occurred somewhere in our body. It’s important that we realize that we are capable of feeling physical pain without hooking into the emotional loop of suffering. I am reminded of how courageous little children can be when they become extremely ill. Their parents may hook into the emotional circuitry of suffering and fear, while the child seems to be adapting to his illness without the same negative emotional drama. To experience pain may not be a choice, but to suffer is a cognitive decision.”

Well, I know how easy it is for me to start to enter that circle of suffering and fear, which of course only makes pain worse. But the idea of having SO MUCH conscious control over pain is fascinating. Jill got the “opportunity” to know how her brain works in minute detail different functional areas came back “on line” during her recovery. Jill is now able to consciously avoid painful situations by choosing to focus her brain on more positive thoughts and actions. This prevents her from “suffering.” I am going to use my brain to think about how I can more often make choices that reduce stress, rejuvenate me, fuel my passions and be more joyful.

I’ll keep you posted on what tools I find helpful along my journey.

Tags: , ,

Leave comment

Nov
02

A Big Shout Out

by admin

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

Tags: ,

Leave comment

Oct
26

I Love Going To The Doctor

by admin

I love going to see my fibromyalgia specialist. I guess I am always so caught up in my day to day activities that my appointment is a time that is just for ME, and to check in on MY health. My doctor makes the appointment fun, even though I might not get the news I want to hear, I always feel well taken care of, and walk away with a plan. He makes me feel confident that my future looks bright, and that he will always be there to support me. I wish I could go every week. And I wish he would live forever.

Even though I am a fibromyalgia specialist, I cannot examine myself, nor can I have perspective about what is going on in my life. But even if I could do these things, I would still relish my appointments. I think we all need to find someone who understands what we are going through and someone who takes the time to concentrate on our particular needs and challenges. Over the years we have built a relationship, we have made human ties, which in The Little Prince is held in such high regard.

I hope all of you find a doctor who not only can help you get better, but who can make you feel special. This is priceless in an era of overwhelmed doctors and medical care that often feels rushed.

Tags:

Leave comment

Oct
19

More Thoughts from the Pediatric Convention

by admin

The last lecture I attended at the American Academy of Pediatrics National Convention was entitled “The Achy, Tired Adolescent.” The talk was divided into 2 parts; an Adolescent Medicine Doctor discussed Chronic Fatigue Syndrome, and a Pediatric Rheumatologist discussed Fibromyalgia. No one called fibromyalgia the “F” word, which I appreciated. I was so excited to attend the talk, to hear the “Giants of Pediatrics” talk about exciting new developments. Well, there aren’t any exciting new developments. No new thoughts on the cause of these syndromes, no new information on tests for the illness, and no new ideas on treatment. Sigh. Well, at least I don’t have to change anything I do in my practice.

As the talk went on, I started to get mad. I learned that a study showed up to 6% of school aged children have fibromyalgia. Pediatricians see A LOT of school aged children, so this is a BIG NUMBER. Also, there are no systematic well controlled studies on treatment for the illness. After 30 months of the conventional therapy, 73% of children no longer meet the criteria for fibromyalgia (means they have improved). But this means that 27% are still just as sick!

25-40% of children with chronic pain fulfill the criteria for fibromyalgia, and pediatricians see A LOT of children with chronic pain.

Why wasn’t I taught this in Pediatric Residency? Think of all the patients with fibromyalgia I must have missed in 18 years, and the patients who are missed every day.

Something needs to change.

Tags: , ,

Leave comment

Oct
12

The “F” Word–Thoughts from the American Academy of Pediatrics National Convention

by admin

On October 5th, I attended the annual American Academy of Pediatrics National Convention in San Francisco. The program brochure was entitled “Children’s Health, Climbing to New Heights, Walk Among the Giants of Pediatrics.” One of the “Giants” was Dr. James Jarvis, a Pediatric Rheumatologist from Oklahoma University, who gave a wonderful talk on how to diagnosis rheumatologic diseases (diseases of the joints), and what lab tests are useful.

What he said near the end of his talk almost made me fall off my chair. He said, “Now I am going to talk about the F word–Fibromyalgia,” and he made a motion with his finger. I have never heard fibromyalgia described as an expletive, as something dirty before. He went on to talk about his experience with children (accompanied by their parents) that are referred to him for possible fibromyalgia, even though fibromyalgia is NOT an illness that involves the joints. He finds children (and their parents) with fibromyalgia very difficult to deal with. From his presentation, I could tell that Dr. Jarvis is a kind and committed physician, but that diseases of the joints are what he prefers to evaluate and treat. He was just trying to be funny.

I understand that the evaluation of fibromyalgia and the education and treatment is intensive and time consuming, but I find it very rewarding. I wish Dr. Jarvis could spend a day in my office. Not all of my pediatric patients are happy and smiling and bouncing around, but many are–after they are feeling better. I don’t mind taking time with worried parents; it’s part of the package.

Let’s change the “F’ word to “Flourish” when you have fibromyalgia. The feeling you get when you start having good days and the world once again holds infinite possibilities. Especially for children and adolescents who have their whole lives ahead of them. Dr. Jarvis–I would happily see your fibromyalgia patients!

Tags: ,

Leave comment

Older posts «

» Newer posts