Dear Dr. McMillan:

Thank you so much for including the article “Managing Abdominal Pain in Children” by Osama Almadhoun MD in the March issue of “Contemporary Pediatrics.” As a physician with fibromyalgia, the mother of a teenager with Juvenile Primary Pediatric Syndrome, and a fibromyalgia consultant for children and adults, I was interested in the Rome III diagnostic criteria for Childhood Functional Abdominal Pain Syndrome. Could we be missing pediatric fibromyalgia patients here? I understand that the term “functional” abdominal pain is used to describe abdominal pain where no pathologic condition can be found. I also understand that pediatric fibromyalgia may be difficult for some practitioners to diagnose. But when the criteria for “functional abdominal pain syndrome” includes “some loss of daily functioning and additional somatic complaints such as headache, limb pain and difficulty sleeping,” I felt right at home. These symptoms so accurately describe many of the characteristics of Juvenile Primary Fibromyalgia. It is hard for me to understand how a child with long standing limb pain, headache, trouble sleeping and abdominal pain could not have an identifiable syndrome.

Sadly, many of my patients have bounced from doctor to doctor until their symptoms are recognized as Juvenile Primary Fibromyalgia. Many of them have adult relatives who have suffered the same fate. I hope that soon more members of the pediatric medical community will step up and make the diagnosis earlier so these children can start receiving treatment.

Sincerely,

Melissa Congdon MD FAAP, Corte Madera, CA 94925

What I wanted to write:

Dear Dr. McMillian:

Am I the only doctor in the country who read “Managing Abdominal Pain in Children” and thought there might be a big problem? How could MOST of the children with chronic abdominal pain that causes some “loss of daily functioning” and have “additional problems such as headache, limb pain or difficulty sleeping” have a “benign problem?” Limb pain? And loss of daily functioning for a prolonged amount of time?  These symptoms are not benign in the life of the affected child and their families. Some of these children may have Juvenile Pediatric Fibromyalgia, but many pediatric specialists are hesitant to make this diagnosis in children as not to “label” them. One of the fellows in the Pediatric Rheumatology Department at a major university hospital in my area told me they NEVER make the diagnosis of pediatric fibromyalgia in children–they call it a “pain amplification syndrome.” As a physician with fibromyalgia, a parent of a teen with fibromyalgia and a fibromyalgia consultant for children and adults–believe me–this delay in diagnosis is not doing the child or family any favors.

Children with fibromyalgia respond very well to treatment. The earlier they are diagnosed the more quickly they will respond to treatment, giving them a better chance to be pain free and experience the joys of childhood! Juvenile Primary Fibromyalgia is a REAL syndrome and should be treated as such. Please use your excellent journal as a forum for specialists to share their knowledge of pediatric fibromyalgia so that we all can benefit.

Sincerely,

Melissa Congdon MD FAAP, Corte Madera, CA 94925

So to all the women with fibromyalgia who have come before me–thank you for doing the best you could. I know your greatest hope is my greatest hope–that your daughters and granddaughters will not have to suffer as you did. Today there is help for those of us with fibromyalgia, and I believe there will be even more help in the years to come.

One evening a month ago, I turned on the Channel 5 local news (a CBS affiliate), and sat bolt upright. Dr. Kim Mulvihill was doing a Health Watch segment on a study about the success of a vagus nerve stimulation device that was tested on 14 women who had “treatment resistant” fibromyalgia pain.

Whoa, fibromyalgia study results being broadcast on the local evening news? I LOVE this! The study, published in the journal “Pain Medicine” in August, described an 8-month study on 11 women who had a vagus nerve stimulation device implanted to treat their severe pain, which did not respond to “conventional” pharmacological treatments. Even though the device has some adverse effects, it may be a “useful addition” to managing fibromyalgia patients with intractable pain.

After Dr. Mulvihill described the results of the study the anchorman said,”There are a lot of people and some doctors who don’t really think it is real; that there isn’t such a thing as fibromyalgia.”

Dr. Mulvihill said, “It was a very controversial diagnosis in the 1990s. That has changed a lot now. Today most medical groups acknowledge it exists and are trying to find treatments to help these patients–it can be very debilitating. But you are right, there are still some physicians who do not recognize this as a true disease.”

Then anchorman ended by saying, “all right, hopefully they get help.”

I know this surgical procedure is not a cure for fibromyalgia, nor is it appropriate for most of us with fibromyalgia, even those of us in severe pain. But the fact that the National Institute of Health funded a study on fibromyalgia treatment, the fact that Gundren Lange PhD thought the condition important enough to conduct the study, and the fact that CBS Channel 5 (and specifically Kim Mulvihill) cared enough to cover the story and help set the record straight on fibromyalgia–makes my heart sing.

Hopefully Dr. Mulvihill’s segment will help a few of the doubting physicians rethink their position on fibromyalgia. After all, no doctor wants to be known as being behind the times. These physicians dont’ want to be thought of as holding the outdated notion that fibromyalgia doesn’t exist, and that they are not interested in helping treat their patients who have the syndrome.

I am going to send Dr. Mulvihill a thank you email right now–from all 6 million of us.

I am finding that on the full dose of Klonopin I thought I was getting good restorative sleep. But now as I am weaning down, I know I am not sleeping as deeply, but I also am more alert in the mornings, and no longer ever feel the need to take naps. Looks like Klonopin was sedating me, and I was not as rested during the day as I feel now.

As the nausea and dizziness fade away, I have periods of time when I feel good. Sometimes I even feel great. During these euphoric times I am seized with the motivation to do things that my body is not quite ready for. One day I thought to myself “lets hike the Pacific Coast Trail!,” and another day I thought “I want to make Coq Au Vin for dinner–the real French way!” How wonderful it is to feel good. Those of us with chronic illnesses have been through so much, it is great to have a little mental respite from the struggle.

But I hold on to the knowledge even though my recovery seems to be 2 steps forward and 1 step back, I will eventually achieve many of my goals, and learn a lot along the way.

Stay tuned.

When I tried to fill my prescription 4 weeks ago, the pharmacist said that the dye free brand name Klonopin was being discontinued. What? Seems not enough people needed the brand name Klonopin (the generic works well and is well tolerated by most people) so it is no longer profitable for the drug company. So I tried the generic Clonazepam. Not only was I awake most of the night, but I was dizzy and had nearly constant migraines.

I knew I had to think creatively, and summon practitioners that could help slowly wean me off of the medication while still getting a decent night’s sleep. So far so good. I am sleeping pretty well after an NAET treatment, a homeopathic remedy, and a lesson in self hypnosis. And yes, I am able to use less and less of the Klonopin every week. I still get frequent migraines, but I know those will fade after I am totally off the Klonopin.

Why are these natural methods working now when they didn’t help before? I think it is because now my sleep is in general much improved and my RLS not as severe, thanks to the steps I am taking to reverse the symptoms of fibromyalgia.

Even though it has been rough going, I guess I am thankful to the drug company that makes Klonopin. I am now able to “dream” of a restful night’s sleep without prescription medication!

So I escaped my tired and sick body for a couple of hours while I watched a bunch of men thrill in the ability to use their talents to come out on top.

They made me smile. Especially when I realized that many of them had battled problems of their own.

Even if I never see the Giants win another World Series, nothing can take that season away from me and all of us that love the Giants. And I have the DVDs to prove it.

Now we know that rats are not humans, and a lot of testing still needs to be done, especially on human subjects. But the fact that the compound focused just on one area of the brain could limit the side effects seen in most current pain medications. And “the rats suffered no harm to their memory or their ability to learn.”

Now I am a pacifist, but I am totally for waging this war against chronic pain.

Many of us with fibromyalgia are very sensitive to medications, and I am no exception. When one of my well meaning doctors thought a medication might help me recover from fibromyalgia faster, I was all for it. But taking 4 pills a day, each covered with blue dye, had me worried. I often had bad reactions to dyes in the past. I checked but this medication did not come in any other form. I was comforted by the fact that this medication is safe for premature infants, and is routinely used. Guess I am more sensitive than premature infants. I worked up to the recommended dose slowly, but after 2 days on the full dose I was dizzy and sedated. I gamely continued the medication for a week until I saw my symptoms were continuing to worsen.

My acupuncturist said the medication “almost did me in.” After stopping the medication, eating healthfully and many sessions of acupuncture, I am back to my old self.

I need to do a better job of listening to the little voice inside that warns me about things that might not be right for my body. Now I rejoice in my slow but steady recover from fibromyalgia symptoms, and have stopped looking for additional medications that might look good on paper, but weaken my sensitive system. Slow and steady DOES win the race, and keeps you from getting the “blues.”

During all of this reading, one name kept coming up. Dr. Daniel Clauw, Rheumatologist and Anesthesiologist at University of Michigan, has been studying fibromyalgia for years and years. He is my new hero, because I think he really understands the syndrome, and is a huge advocate for us.

Check out the link to a New York Times article entitled “Getting to the Roots of Fibromyalgia Pain,” in which Dr. Clauw is interviewed.

Take that all of you naysayers and disbelievers–hard scientific evidence regarding fibromyalgia is all laid out for you.

Thank you so much, Dr. Clauw, and please keep up your good work!

http://www.nytimes.com/ref/health/healthguide/esn-fibromyalgia-expert.html

Too bad she said it in a disparaging way (but that is her character). It is also her character to lump all of us into the “can’t work” category. True, some of us are too disabled to work, but some of us choose not to work or have been able to return to work because we are getting better. Some of us have never stopped working.

America, don’t be a “Sue.” Don’t lump us all into one group. Our symptoms are as diverse as those of any other illness.

Until the medical community and doctors listen to what we keep trying to tell them about the syndrome, we are doomed to be misunderstood.

We need to keep educating our doctors and anyone else who cares about our illness, our symptoms, and what we need to get better. One “Sue” at a time.