Laughing and crying, you know it's the same release. Joni Mitchell

Laughing and crying, you know it's the same release. Joni Mitchell

Wednesday, March 30, 2011

Chronic Fatigue in the News

The New York Times building in New York, NY ac...Image via Wikipedia
 The March newsletter from Massachusetts CFIDS/ME & FM Association contained links to several interesting articles about Chronic Fatigue published online from sources such as the New York Times, the Wall Street Journal, and the Huffington Post. The links originally appeared in CFIDSLink, the newsletter for CFIDS Association of America.


I encourage you to read the following articles for interesting and well-reported articles about Chronic Fatigue Syndrome:

"The Puzzle of Chronic Fatigue Syndrome" by Amy Dockser-Marcus in the Wall Street Journal.  Dockser-Markus writes about the experiences of Dr. David Bell (who will be speaking at our lecture on April 16) and his patients in the small town of Lyndonville, N.Y. The online article has a video of Dr. Bell.
"An Illness That's Hard to Live With - And Define" by Leonard Jason, PhD, also in the Wall Street Journal, describes his experience of the illness.  Dr. Jason has been an active CFS researcher, and led the effort to create a diagnostic definition of CFS in children.
"Troubles with CFS Start With Defining It" by David Tuller in the New York Times (online now and in print on Tuesday, March 8). This very important article describes why the selection of patients for research studies, which depends on how the illness is defined, is so critical to research results.
"Chronic Fatigue Syndrome & Psychotherapy" by John Falk in the Huffington Post. This personal story will resonate with many patients who have hidden their illness from others.
Unlocking Chronic Fatigue Syndrome. Another great piece in the Wall Street Journal by Amy Dockser Marcus, The online version has 5 tabs:
•    Article: the article itself (which includes links to the items listed below)
•    Video: a link to the David Bell video published earlier this month
•    Interactive Graphics:  a timeline of XMRV
•    Documents: a patient experience story (by a 21-yr old)
•    Comments: where people can comment on the story
Another source for current articles and information about CFS (chronic fatigue syndrome) and FM (fibromyalgia) is the Co-Cure website and Co-Cure list serve. Co-cure stands for "Cooperative and Communicate for a Cure." This is their mission statement:
The primary goal of the Co-Cure list is to further co-operative efforts towards finding the cure for the illness(es) commonly referred to as Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM). One of the ways in which this goal may be achieved is through effective exchange of information. This page and supporting pages are dedicated to that purpose. 
 I encourage you to stay informed as much as possible. New information and understanding of these dibilitating syndromes is available more and more.
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Saturday, March 26, 2011

Operating Under the Influence of Magnesium

infusion bagsImage via Wikipedia



You know how some medications have a warning that says: don't drive or operate heavy machinery while taking this medication? Well, they should print the same warning on the side of the Magnesium/Vitamin B infusion bag. Magnesium is a muscle relaxer and it sure does it's job! I was so out of it after my IV Nutrient Infusion Therapy at The Rothfeld Center that I had to recline in the lounger and close my eyes for 10 to 15 minutes before I could even get out of the chair. Magnesium also causes a warm flush throughout the body. It's like having a hot flash and a Valium at the same time!

By coincidence, my friend was in the infusion room at the same time and we joked that we should have come together since driving home is "challenging" after therapy. But then I realized that we could both be killed! Plus it would be an interesting conversation with the cops if we got pulled over. "I'm sorry officer but we haven't been drinking. We just had mega doses of Magnesim!" Friends Don't Let Friends Infuse and Drive!

Another woman in the infusion room had her husband bring her to the center so that she wouldn't have to drive home. Probably a good idea. One more interesting side effect of the infusion was the taste of B Vitamins in my mouth. I took one bite of my chicken parmigiana sub after treatment and it tasted like bitter herbs. And Passover isn't for another few weeks!

The good news is that I didn't need to nap the rest of the afternoon the second time around like I did after the first treatment. I hope that means I'm getting better.

So remember to infuse responsibly and don't infuse and drive!

This message brought to you by MADD - Magnesium Adds Ditsy Drowsiness

Wednesday, March 23, 2011

St Patrick's Day Parade in Boston

The St. Patrick's Day Parade isn't exactly about fibromyalgia, but even people with chronic illnesses need to have fun every once in awhile! I have to admit that everything hurt by the end of the day - my feet, my knees, my hips, my back - and I was an exhausted, hot mess. But it was worth it! We had the complete St. Patrick's Day Parade experience.

We saw everything from college kids dressed in green on the T (subway) taking jello shots out of a pizza box to police breaking up a cat fight between two drunk girls to to an officer issuing a citation to a young man to locals sitting on couches and chairs on the sidewalk. And then, of course, there was the parade...

It had everything you would expect in a St. Patrick's Day Parade in South Boston, aka "Southie." There were bagpipes with dancers, floats with giant shamrocks, Minutemen firing muskets, Shriners driving miniature cars and trucks, mounted police, waving politicians, veterans and the coast guard. But it also had the unexpected, such as Star Wars characters, Elvis impersonator, an Asian marching band complete with dragon, and the Ghostbusters accompanied by the Stay Puft Marshmallow Man.

I got some helpful parade tips from another blogger who writes about her family's travels. She suggested getting off the T at the end of the parade route and walking up the hill to the National Park, Dorchester Heights. It had a commanding view of the Boston Harbor on one side and the Boston skyline on the other. It was also a great vantage point for the parade, especially for short people like me!

We also partook of the local cuisine. Our friend bought a chili dog at the bake sale for the 4th Presbyterian Church. He swore it was the best chili dog he's ever had. Then we stopped at the pretzel vendor and had giant, soft pretzels. We all ordered mustard, but the pretzel guy ran out of mustard for our friend's pretzel. On the way home, we stopped at the S&S Deli in Cambridge. I finally had the Rueben sandwich that I'd been craving all week. The corned beef was the perfect way to honor St. Paddy's Day!



Take the St. Patrick's Day Parade Quiz below to find out how much you know about this Boston tradition!
video

Sunday, March 20, 2011

The Rothfeld Center for Integrative Medicine

On the recommendation of a friend with both MS and Lyme Disease, I went to see Dr. Glen Rothfeld at the Rothfeld Center for Integrative Medicine. In fact, I've been to the Rothfeld Center three times this week. On Monday I had my initial consultation with Dr. Rothfeld. On Wednesday I had blood drawn after fasting for 12 hours to test for all kinds of things like thyroid, Lyme, viruses, adrenal hormones, etc. And on Friday I had my first IV Nutrient Infusion Therapy with Magnesium and Vitamin B. I felt pretty loopy after the IV treatment, so I went home and had a nice nap!

Dr. Rothfeld has been treating people with fibromyalgia and chronic fatigue syndrome for 35 years and he knows what he's doing. He's built a practice that integrates the best of Western and Eastern medicine with supplements and IV therapy. At the initial consultation, Dr. Rothfeld spent a good deal of time with me going over all my history, what's worked in the past and where I am now. He did a physical exam in which he felt either side of my spine and could tell right away how tight my neck was on the right side, which made the left side of my lower back tight, too, as compensation. He said that the tightness in my neck might be triggering "fight or flight" nerves that release stimulating hormones which could be interfering with my sleep.

Malic acid 3DImage via Wikipedia
Structure of Malic Acid
Since results of the blood work takes 4 to 6 weeks, he made some recommendations to start me off in the meantime. One recommendation was a supplement called RibosCardio, which is similar to a product I used when I first started at the Fibro and Fatigue Center, so I felt it was on the right track. It's a powder that helps boost energy levels with d-ribose, magnesium, malic acid and L-carnitine. It's a little bitter, but I add some stevia and it's not too bad.

He also knew both my rheumatologist and acupuncturist and said that he works well with them. I felt like I'm finally building the right circle of health care providers that can really help me deal with my fibromyalgia on a long-term basis. After all, with a chronic condition I have no choice but to be in it for the long haul!

I will post more about my experiences with the Rothfeld Center as I go through the process with Dr. Rothfeld.
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Wednesday, March 16, 2011

Tai Chi, Anyone? Study Shows It Helps With Fibromyalgia

A Woman does tai chi.Image via Wikipedia
I went to Qigong (chee gung) class at my health club this morning and it was on "vacation" - which means it's canceled until further notice. I was really disappointed because I had just begun to take the class and had only attended two or three sessions. Now I'll have to pay to take Qigong at another facility when I'm already paying an exorbitant amount at my current health club. Oh, well, I guess "health" is the operative word here, and I have to do what I need to do to maintain it.

The Universe had conspired to get me to the class in the first place. I was getting so many messages that taking Qigong was the right thing to do for my fibromyalgia that I couldn't ignore it any longer. First my Chinese acupuncturist suggested Qigong to treat my fibromyalgia and had told me where to take a class. Then while I was on hold for my doctor at an integrated health center, the recorded message told me about a Qigong class there. I called the instructor for more information, and he told me that his fibromyalgia patients report that their symptoms are completely gone after taking his class. He also offers a book and CD.

Then two different friends gave me two different articles about a study published in the New England Journal of Medicine that showed improvement in fibromyalgia patients who took Tai Chi. I had tried Tai Chi several years ago and didn't notice any difference. But in all fairness, I probably didn't give it enough time. I was impatient to see results and stopped going after a few classes.

The New York Times reports on the study:
A clinical trial at Tufts Medical Center found that after 12 weeks of tai chi, patients with fibromyalgia, a chronic pain condition, did significantly better in measurements of pain, fatigue, physical functioning, sleeplessness and depression than a comparable group given stretching exercises and wellness education. Tai chi patients were also more likely to sustain improvement three months later.

I asked my instructor about the differences between Qigong and Tai Chi. Her answer was that Tai Chi is based on martial arts while Qigong is designed for healing and energy. Qigong means “cultivating essential life energy.” I've done classes in both practices and they are similar but Qigong seemed more flowing and gentle.

If you're looking for a DVD to do at home, someone recommended Lee Holden as a good DVD instructor. His Qigong and Tai Chi DVD's can be found at his website exercisetoheal.com

Has anyone else had experience with either Qigong or Tai Chi? Did it help your fibromyalgia? Tell us about it!
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Sunday, March 13, 2011

Doctor Studies Blood Test to Diagnose Fibromyalgia

Common signs and symptoms of fibromyalgia. (Se...Image via Wikipedia
Who ever heard of a blood test to diagnose fibromyalgia? Well, there might be one when Dr. Bruce Gillis of Santa Monica, California finishes his research study. I came across an article on this topic while reading a great blog about fibromyalgia and other chronic illnesses, Oh My Aches and Pains!

Oh My Aches and Pains!: Could It Be True? A Blood Test to Diagnose Fibromyalgia?

According to Oh My Aches and Pains!:
Dr. Gillis explained that while doing related research, he happened to discovered a particular cytokine profile in the blood that appeared to confirm whether a person has fibromyalgia or not...this blood test would result in a validated, objective way to diagnose fibromyalgia.
As we know all too well, fibromyalgia is currently diagnosed through the process of elimination of other diseases along with the subjective and often unreliable tender point system. In 2010 a new diagnostic tool was implemented by evaluating the severity of pain and other symptoms using the widespread pain index (WPI) and the symptom severity (SS) scale. But a blood test would put all that to rest, providing indisputable proof of the presence of fibromyalgia.

Oh My Aches and Pains! goes on to say:
What are cytokines? The simple answer is that cytokines are small protein molecules released by nerve and immune cells that send signals to other cells in the body to do things like alter cell functions and increase/decrease the regulate of genes. In the case of fibromyalgia, these messengers cause the central nervous system to create the widespread body pain characteristic of fibromyalgia as well as other physiological, hormonal and behavioral changes.
Dr. Gillis conjectures that retesting after starting treatment for fibromyalgia will show whether the treatment is working. A change in the cytokine profile can indicate whether or not the treatment is effective.

The research study is ongoing, so if you live in the Los Angeles area, you can volunteer to participate in the study. Oh My Aches and Pains! provides this contact information:
To learn more, read the online recruitment flyer or call (310) 586-1919 or (310) 586-2929 for more information.
EpicGenetics
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Tuesday, March 8, 2011

The Healing Power of Pets

Cleo the Healing Kitty
After a rather sleepless night, I got my daughter on the bus, let the dog out and crawled back into bed. I was feeling lonely and anxious until my cat, Cleo, jumped up on the bed. She sat on my chest, purring and kneading her paws. Suddenly I wasn't lonely any more and I could feel the anxiety dial down a few notches. I call Cleo my "Healing Kitty" because she has been a big part of my recovery from several ailments, including brain surgery, fibromyalgia, pulmonary emboli and now perimenopause (which could be the cause of those lonely, anxious feelings).

Cleo as a kitten

When Cleo was a kitten, I had a craniotomy to remove a benign brain tumor, called a meningioma. I did a lot of sleeping on the couch during my recovery. Cleo would climb up to my shoulder and curl up in the crook of my neck. It brought me back to the warmth and comfort of the days when my babies would fall asleep on my shoulder and I'd press my cheek against their warm, little heads. Ever since then, Cleo has been my partner in healing.

Of course, I'm not the only one whose discovered the healing power of pets, which extends even to the point of increasing our longevity. Studies have shown that pets can lower your blood pressure, prevent heart disease and help you heal faster. Having a warm, fuzzy companion to love and to give us love keeps us healthier and happier.

In fact, there are organizations dedicated to supporting that special bond between people and animals. Pets on Wheels provides friendly visits from people and their pets to improve the health and outlook of patients in nursing homes and veterans' hospitals. The Nature Connection, formerly known as Animals As Intermediaries, brings nature programs and live animals to youths-at-risk, people with disabilities and elderly.

“We may regard plants as teachers;
rocks, rivers and clouds as messengers;
and animals as intermediaries.”
Sarah Seabury Ward, Founder of The Nature Connection 

Related articles:
How Pets Help You Live Longer
Can Owing a Pet Help You Live Longer?

Saturday, March 5, 2011

What's the "Purpose" of Fibromyalgia?

According to certain New Age philosophies our souls are put on this Earth to learn and to grow. Each of us has certain life lessons to accomplish, like Scrooge learning to be generous, not just with his money, but with his spirit. This theory also holds that life's trials and tribulations are purposely put in our lives as opportunities for growth. And if we don't get it this time around, we come back again and again until we do.

If that theory is true, then what is the purpose of fibromyalgia in my life? Why do I have pain and brain fog and depression and fatigue? Well, for one thing, I've learned to take better care of myself. I eat healthy foods, exercise regularly and guard my energy. I also learned to appreciate the days that I do feel well and rested.
Photo by David S. Bell, MD

But I think there's something more...something deeper. I think that the purpose of fibromyalgia in my life is to learn to love and accept myself, and that includes being a woman. There was a time that I wished to come back in the next life as a man. I was so tired of the monthly hormonal roller coaster, the fibromyalgia and being treated like a second class citizen in a world literally run by men. I wanted a big dose of testosterone so I could go out and conquer the world without having to worry about how everyone else feels or what everyone else needs.

And so, begins my journey to love and accept myself - female, fibromyalgia and all.

Wednesday, March 2, 2011

My First Hot Flash!

I was in my doctor's office when it happened. I was due for a pap smear (oh, the indignity) so I was sitting on the exam table with a paper sheet draped around my lower half. It was actually good timing because it reminded me to tell my doctor about the night sweats (one of the reasons I'm not sleeping so well) and missing my period for the first time. I wasn't sure if skipping a period was due to the stress of everything I've been through lately or if I was actually entering menopause. My doctor said that when the ovaries are so close to shutting down, sometimes stress can temporarily stop ovulation but then it starts back up again. She said only time will tell. Either way, I've definitely entered a new phase.

We talked about how I wasn't a candidate for hormone replacement therapy because of the blood clots. I guess it's black cohosh for me. My acupuncturist can probably hook me up with the good stuff.

We also discussed anti-anxiety meds to help me sleep. We looked at options like Ativan and Klonopin, but they can be habit forming and create a backlash of more anxiety - exactly what I don't need. In the end, I went with my old pal, Cymbalta. I called it my "happy drug" when I was on it a few years ago because it helped me with the fibromyalgia, sleep, depression and anxiety. An all-in-one treatment! But it takes awhile to build up to the full dose, so I won't know how well it's working for a couple of weeks.

Meanwhile, I just have to hang in there. I'm looking forward to not having a period because it aggravates my fibro so much, not to mention the pms. But I know that the transition from here to there is a rough road. As my friend told me: fasten your seat belt, it's going to be a bumpy ride.

Info and remedies for hot flashes and night sweats: Project Aware