Major Changes at National FM Organizations

The National Fibromyalgia Association (NFA) has been in turmoil over the last several years, since the economic downturn in 2007. The Founder and President of the NFA, Lynne Matallana, retired June 1, 2011 after 14 years of dedicated work in serving the FM community. She continues to heal from a terrible accident and major surgery last September, which has impacted her ability to continue with the organization. In the vacuum created by the NFA's financial and organizational troubles, another organization, the National Fibromyalgia and Chronic Pain Association (NFMCPA) was formed and has been collaborating with the NFA. You can read more about the background of these changes in Lynne's own words at the NFA website.

Below is the latest letter from Herb Smith, Chairman of the NFA:

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Joy's Got Her Groove Back

I'm calling the last twelve months my "lost" year. Not only did I loose all my time and energy in dealing with one health crisis after another, but I lost myself as well. I've been working diligently to reconnect with my personal power, to revive my creative drive and to remember who I really am - a Powerful Creative Being! I've gone on shamanic journeys to retrieve my soul. I've traveled to fun and exotic places to rejuvenate myself. I've worked with my therapist to face my fears and heal my emotional being. And I'm happy to report that it's paying off. I finally feel the call to create; I'm energized by my creative projects and I'm excited about what I'm working on. Let me give you two examples.

My illustration for "Rivkah and the Mice"

Last winter, my rabbi asked me to be on the editorial board to revive our synagogue's literary magazine, Lichora, which has been on hiatus for quite awhile. The board decided to get our first issue out in time for the High Holidays (which are quickly approaching). I wanted to write about the spiritual journey I've taken through my "lost" year, and I told the editor that I would submit an article. But I just didn't have it in me to write the damn thing. Then one morning I woke up and the whole thing came pouring out of me. Still, the rough draft sat on my desk for months. With the deadline looming, I decided it was time to face the empty page and write my article, which has been very cathartic. I could feel my excitement and energy returning as I worked on draft after draft. I also had fun collaborating with my son on a photographic illustration. I had the image in my mind, but not the computer skills to create it. Since my son is studying digital imaging at the College of Arts and Architecture at Penn State, he is a wiz with manipulating images on the computer. He was able to take my vision and make it a reality. As soon as he finishes refining the image, I'll be ready to submit my article and photo illustration to the board.

A few months ago, the leader of my writing critique group brought in an article from the Children's Writer newsletter called "Celebrating Jewish Identity in Books." The article listed the needs of several Jewish publishers and agents, which inspired me to resuscitate a story I had written years ago called "Rivkah and the Mice." Back in 2004, Rivkah won a writing contest for Best Picture Book. Part of the award was the chance for four editors, two from Jewish publishers and two from mainstream publishers, to review my manuscript and dummy for publication. I had such high hopes! But Rivkah received only rejections and she was relegated to the back of my basement. I was so disappointed that Rivkah may never become a full-color picture book for children. But now I'm hopeful again and I've had fun revisiting Rivkah and all the colorful characters in her village. Even if Rivkah receives rejections again, revisiting her has revived my hopeful, creative nature.

So, to recap: reviving Lichora and revisiting Rivkah has resuscitated my drive and reminded me of who I really am. How's that for alliteration?

Related articles

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Water Aerobics Saved My Life!

Image via WikipediaThere is nothing better for fibromyalgia than a water aerobics class outdoors on a sunny summer day! During the long New England winter, the pool at my health club is covered with a bubble that traps in the heat, humidity and chlorine fumes! All the gray-haired ladies and I wait anxiously from Labor Day at the beginning of September until Memorial Day at the end of May for that @#$!! bubble to come down. It has been a glorious summer for outdoor water aerobics this year and I'm trying to get in every last day that I can. All too soon, that bubble will go up and we'll have to suffer through another claustrophobic winter. Of course, water aerobics under the bubble is better than no water aerobics at all, but there is no comparison to exercising in the pool outside in the warm weather.

Image by kaysha via FlickrWhen I was first diagnosed with FM, I went to see one of the top docs for fibromyalgia, Dr. Don Goldenberg. He told me that in order to feel better I had to exercise. I couldn't even imagine exercising since I could barely walk around the block without collapsing on the couch. Dr. Goldenberg told me to try water aerobics because the buoyancy of the water takes the pressure off sore joints and muscles. It took awhile to find the right facility, I've been doing water aerobics in one form or another ever since. I started out in the Nifty Fifty class (well before I was 50), which took things pretty slow. But I built up my strength and my endurance and now that I'm over 50 I'm in a very vigorous aqua fitness class that is actually quite challenging. At 40 I could barely walk around the block and at 50 I could climb the ruins at Tulum, Mexico. Exercise, specifically water aerobics, played a big part in my recovery.

Water aerobics literally saved my life and gave me back a semblance of normalcy. A few years ago I saw Dr. Goldenberg for the last time, and he told me - whatever you do, don't stop the water aerobics. I took his advice to heart and I've kept going three times a week - bubble or not! It makes a huge difference in my life and I make it a priority, even on the bad days.

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Thyroid Resistance Syndrome

If your thyroid levels are considered normal or on the low end of normal, but symptoms of an underactive thyroid, or hypothyroidism, are still present then Thyroid Resistance Syndrome (TRS) may be a factor. Mainstream medicine does not typically treat TRS, but doctors who treat patients with FMS know that a shot of T3, the active form of thyroid hormone, helps to relieve some resistant FM/hypothyroid symptoms such as fatigue, weight gain, cold hands and feet, constipation and bloating. At my last follow up appointment at the Rothfeld Center, my doctor suggested that TRS could be the reason that the scale has not responded to the cleanse and the detox regimen I've been following.

Sometimes I wonder if I even have a metabolism! It seems like I have to "diet" just to maintain my weight, and no matter what I do, the pounds will not come off. Dr. Rothfeld said that even though I'm already being treated for hypothyroidism, my internal furnace is not burning hot enough and may need a boost of T3 along with the T4 that I'm already taking. He asked me to take my temperature three times a day for three days to determine where to begin. I started yesterday and upon awakening, the time of the lowest body temperature, my temperature was at 97.6 - a full point below the normal 98.6!

Here's more information from the Rothfeld Center about Thyroid Resistance Syndrome:
The thyroid gland, at the base of the neck, is one of the body's largest endocrine glands, which secrete hormones into the bloodstream. The thyroid's main function is to regulate the body's metabolic "furnace" and a malfunctioning thyroid affects temperature control, weight control and the conversion of food into energy. The thyroid mainly makes the thyroid hormone T4 which is largely inactive. The production of T4 is controlled by stimulation from the pituitary hormone TSH (thyroid stimulating hormone).T4 then travels to individual cells where it is converted to the active form T3, which then travels to the mitochondria or the furnace of the cells that control metabolism.

When TSH levels go above a certain level (around 5.5) the thyroid is considered underfunctioning by conventional medicine. That's when thyroid replacement is given, mostly in the form of synthetic T4. However, there is considerable evidence that blood tests fail to detect most cases of underactive thyroid. Some people have "tissue resistance" to thryroid hormone. In other words, T4 is being produced at normal levels but it is not being converted to T3 at the cellular level. Instead, T4 can convert to a blocking hormone called reverse T3 which can slow the metabolism. Patients experience symptoms of low thyroid but are considered normal because their TSH is normal.


Lewrockwell.com lists these symptoms of low thyroid:

The classic signs of a sluggish thyroid gland include weight gain, lethargy, poor quality hair and nails, hair loss, dry skin, fatigue, cold hands and feet, and constipation – and these symptoms are relatively well known.

However, some of the conditions you might not associate with your thyroid include:

• High cholesterol
• Irregular menstruation
• Low libido
• Infertility
• Gum disease
• Fluid retention
• Skin conditions such as acne and exzema
• Memory problems
• Poor stamina

Related articles

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5 Month Wait List for Top Fibro Doc

By the numbers, this has been an auspicious week so far. Five: the number of months I waited to see Dr. John Bordiuk at the Marino Center for Integrative Health. I finally had my appointment on Tuesday, August 2. Seven: the number of months I was on blood thinners due to blood clots in my lungs. I finally got off Coumadin on Monday, August 1 - yay! Ten: the number of students in my creative writing class for kids in fourth to sixth grade which started on Monday, August 1. I usually get mostly girls but this time I have five boys and five girls - a full class. It's been fun to see what their imaginations dream up!

Last winter when I was really in a deep, dark hole, I asked the Massachusetts CFIDS/ME and FM Association for FM doctor referrals. The top doc on their list was Dr. John Bordiuk, but they warned me that he had a long waiting list. I called his office in March and was told that he was booking new patients in July but when I finally got an appointment, it was for the beginning of August! As the start of my creative writing class approached I realized that it would be a long, tiring day for me to see Dr. Bordiuk on the same day as my class. So, I called his office to reschedule and was told that I would be put at the bottom of the list and wouldn't be able to get in to see him until January! I didn't know whether to be upset that I would have to wait another five months or be glad that he's so good that he is in such high demand. In the end, I kept my original appointment and saw Dr. Bordiuk this week.

I was surprised that he didn't ask me to fill out paperwork ahead of time for health history and a list of supplements and meds. I did the list anyway because I was sure he would want to know what I'm currently taking. When I checked in at the Marino Center, I asked if I needed to fill anything out and the receptionist said that they were all set. To be fair, my rheumatologist is also at the Marino Center and Dr. Bordiuk did have some background information on me from previous records. He knew that I was coming to see him for fibromyalgia and that I had recently had bi-lateral lung embolisms. He was very kind and patient as I told him my whole sob story. He asked if anyone had ever done a stool sample to test for yeast - a common gut problem in fibro that can cause a whole host of symptoms - and he was surprised when I said no. He was also surprised that no one had ever tested me for food sensitivities. Although I've done many special diets and cleanses to combat fibro that usually consist of no sugar, no dairy, no wheat, no alcohol, no chocolate, no caffiene, etc., I've never actually been tested to see what foods may be specific triggers for me.

The food sensitivity test was easy - a blood test to look for antibodies in reaction to over 180 different kinds of foods. The stool test means I have to poop in a cup and collect samples from different parts of the "specimen" and put it in a tube. Kinda nasty but I'll do it if I have to. Anything in the name of better health, right? Results will be back two weeks after I send back the samples. I'll keep you posted!

Soul Retrieval

With the help of my therapist, I continued my journey to balance and reintegrate those parts of myself that felt disconnected, such as my creative drive, my sense of self-worth and my personal power. My therapist suggested that a part of my soul split off when I had a terrible flare-up of fibro symptoms last fall that left me feeling like I was once again in a deep, black hole. Then I developed blood clots in my lungs on top of all that, and I've been crawling inch by inch out of the black hole ever since. The good news was that my soul had not traveled far and my therapist suggested a shamanic journey to retrieve it and reintegrate it into my body.

To begin the journey I closed my eyes and settled into a comfortable position as she drummed. Soon I saw myself crawl out of the black hole and stand on solid ground. One of my totems, Horse, came to me and offered a ride. I climbed on Horse's back and we traveled over the flat plains until we reached a hill overlooking a valley. Horse stopped and pawed the ground and I knew I had to continue on my own. I got off Horse's back and walked into a woods. I pushed back branches until I came upon a clearing with a pool of water. I recognized it as the same place I had first met my power totem, Jaguar, many years ago. Jaguar represents reclaiming your personal power, which is exactly what I needed to do now. Then I saw Jaguar walk out of the woods on the opposite side of the pool and stop to drink from the clear water. I jumped into Jaguar and the two of us became one. I could feel Jaguar's powerful muscles as he walked back into the woods. Finally we stopped on the top of a hill under the moonlight. Jaguar sat down and licked his paws.  I wondered where we would go next. I thought about the beginning of my journey and crawling out of the black hole. Jaguar told me not to look back to the pit - the past was over.

When Jaguar continued we walked through a white mist. I saw Jaguar from above and now I was riding on Jaguar's back. I could still feel the powerful muscles as Jaguar slunk through the mist. I felt pulled forward and to the left as I listened to the drumming. I remembered that this was the direction that I had shot an arrow in a previous vision. I wasn't ready to follow the arrow at the time, but now I realized that the arrow was the part of my soul that I had sent away to be safe until I was strong enough to retrieve it. I felt the presence of a young woman in white. She drew us to a clearing in the mist filled with light. I stood in the light with my arms open wide, face turned up, eyes closed. The light filled me and surrounded me. I could sense the woman, my soul, rejoin me and become part of me again. I was worried about holding onto this slippery soul but I was told that I couldn't hold onto her. A voice said: don't worry about the future or look back to the past; stand here in the moment, in the light, and if you ever loose your way again, jaguar will always show you the way back. I felt myself rising up. I saw Jaguar from above again. Jaguar got smaller and smaller as I rose higher and higher. I thanked Jaguar for showing up and for showing me the way back to myself again. Then I opened my eyes and returned to the present world.

The next morning I awoke feeling vaguely anxious. I closed my eyes and put myself back into the clearing of light. I felt calm, centered and whole again. I knew that if I ever felt disconnected or lost again, the clearing of light is there to help me recenter and balance myself.

How to Beat the Heat with FM

It's going to be almost 100° today and even higher with the heat index. Newscasters are warning folks to keep a close eye on the elderly and children who are more susceptible to heat. I would add those with fibromyalgia are more susceptible as well. We have a difficult time regulating body temperature, whether hot or cold, and extreme heat can zap our energy, leaving us with debilitating fatigue. When the temperatures rose last week, I tried to stay in the air conditioning as much as possible. I took my laptop to Starbucks to write an article that was due that day and stayed until my laptop ran out of juice. If I had thought ahead, I would have brought my cord to plug it into the outlet. Later, I went to my health club to exercise, just to be in the a/c and take a shower! Afterwards, I visited with friends who have central air conditioning. By that time, things had cooled down enough that I could go home and relax. A friend of mine who used to work as a carhop at a drive-in restaurant in Maine told me her trick - she would get her undies and bra wet with cold water and wear it under her uniform. As her body heat went up, the underwear got dry and kept her cool in the process. While everyone else ended the day wet with sweat, she ended the day dry and cool! I've never tried it, but I'm willing to give it a go this week with all the heat! 

Here are ten tips for beating the heat:

1. As I said, stay in the air conditioning as much as possible. Go to the mall or the movies if you don't have a/c at home.
2. Make your own air conditioning by putting a bowl of ice in front of your fan.
3. Drink, drink, drink! Don't wait until you're thirsty because you may already be too low on water. Water is best. Avoid coffee and tea which has caffeine and alcohol which interferes with your body's ability to fight heat stress.
4. Pull the shades down on the sunny side of the house.
5. Take a cool bath or shower - it provides amazing relief from the heat 25 times faster than cool air. 
6.  Avoid hot, heavy meals which add heat to your body. Eat smaller meals more often and avoid cooking on the stove during the hottest part of the day. My dad said cold watermelon was the food of choice when he was young (before air conditioning!).
7. Wear light weight, light colored, comfortable clothing made of natural fabrics.
8. Spritz yourself: keep a spray bottle in the refrigerator and give yourself a spray. You'll cool off as the water evaporates.
9. Stay inside as much as you can. If you have to be outside, save strenuous activities for the cooler parts of the day and take breaks in a cool, shaded area.
10. Use a buddy system to check in with neighbors or friends to make sure everyone is all right. Recognize the syptoms of heat exhaustion and heat stroke:  heavy sweating, paleness, muscle cramps, tiredness, weakness, dizziness, headaches, nausea and fainting. The best ways to treat heat exhaustion is by drinking fluids, resting, or taking a cool shower. If heat exhaustion is not treated, it can evolve into heat stroke, which is considered a medical emergency.

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