Fibromyalgia Syndrome Relief

The discovery of XMRV in 68% of people with chronic fatigue syndrome has raised questions for which we likely won’t have answers for a long time. In the meantime, however, scientists do know certain things about XMRV and retroviruses in general.

Recently, Dr. Lucina Bateman and the CFIDS Association put on a webinar called “XMRV: Implications for CFS.” It was a good review of what we’ve learned about XMRV and also had some great information about retroviruses. What really caught my attention was the portion about what retroviruses can do to the human body.

According to Dr. Bateman, retroviruses are known to cause a variety of blood-borne and neurological diseases, which certainly fits with the prevailing (non-psychosocial) model of chronic fatigue syndrome, and also fibromyalgia. Dr. Bateman listed symptoms that retroviruses can cause. This list comes directly from her slides, and many of them probably look familiar to you:

• Weakness
• Wasting
• Ataxia (imbalanced gait or walk)
• Arthritis
• Dementia
• Neuropathy (damage to nerves)

She also talked about how any condition that involves dysfunction, modulation or suppression of the immune system can change how our bodies deal with the infectious agents that are around us every day, allowing typically harmless ones to become dangerous.

You can see why scientists started looking for a retrovirus — the more we learn, the more it seems likely.

Still, we do have to remember that XMRV research is in its preliminary stages and it’s too early to say whether it causes chronic fatigue syndrome, fibromyalgia, or any other illness. We’ll need a lot more research to figure out its role, and even more before we know how to treat or prevent it (if needed).

To see all of Dr. Bateman’s presentation slides, follow this link:

• XMRV: Implications for CFS

For more information on XMRV and what the discovery could mean in terms of diagnosis, treatment, prevention and more, see:

• XMRV & Chronic Fatigue Syndrome

Coming Soon: Dr. Judy Mikovitz’s XMRV presentation.

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• Chronic Fatigue Syndrome Symptoms
• Understanding Brain Fog
• How to Pace Yourself

Photo &copy Andersen Ross/Getty Images

XMRV & Chronic Fatigue Syndrome: What Can Retroviruses Do? originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Saturday, January 30th, 2010 at 06:00:07.

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It’s been a full day. I watched the sunrise over the Kofa Mountains while Dwain snored away.

The morning was spent in town. We went to the big tent for the craft show and beginning of the car show. The car show is Saturday and Sunday. But a few were in place. We saw a Studebaker. Definitely doesn’t look like the one in back forty. We talked to a couple who had a photography booth.

Looked at a few booths outside, nothing new. Stopped at The Gambler, which is an RV supply store. Got gas for the generator and water. We buy water here. Cheapest place we have found is five gallons for a buck. We got a burger at Burger King. Last stop I picked up produce and bread while Dwain mailed a birthday card to our good friend Carol. Carol is a great friend (not just a good friend) and she always reads my blog. She is older than I am! Hee Hee

After we got home, Dwain started putting together a clothes line. Saturday will be wash day. I worked on the computer until our neighbors stopped by while on a walk. They are from Canada. We had a nice visit.

My Fibromyalgia is doing ok today. I had cramping in the back of my upper legs after walking down town. Still protesting a little tonight. I did have something different happen this morning. As I was sitting up in bed before getting up, quite a bit of tearing poured from my left eye. This has never happened before. I probably wouldn’t have thought much of it, but a friend on the Facebook Fibromyalgia site commented about doing the same thing the day before. I will check my favorite Fibromyalgia book, Fibromyalgia Up Close and Personal, to see if the good doctor discusses this issue.

Still have a sink full of dishes that need to be done. Will write more tomorrow.

Classic Blog: July 22, 2008

Among the many confusing things you have to deal with when trying to learn about fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS or ME/CFS) is the difference between a disease and a syndrome.

When doctors who don’t believe in FMS or ME/CFS are quoted in articles, they frequently lean heavily on the distinction. The word “syndrome” itself has been so misused in the popular media that it sounds a bit silly and overblown. But really, what’s the difference?

The definition of syndrome is pretty straight forward:

• Syndrome: a collection of signs and symptoms known to frequently appear together but without a known cause.

Defining disease is a little more complicated. Many medical dictionaries define it as a disorder in a system or organ that effects the body’s function. Some, however, add more requirements:

• Disease: a morbid entity characterized usually by at least two of these criteria:
1. Recognized etiologic agent (cause)
2. Identifiable group of signs and symptoms
3. Consistent anatomic alterations

Here’s where you find the important distinctions. We still don’t have widely recognized causes for FMS and ME/CFS; signs and symptoms are too variable, and often point to numerous possible causes; and researchers have failed to find anatomic alterations that are consistent enough to stand up to scientific scrutiny.

It’s important to remember, though, that while the term syndrome sometimes seems to belittle the illness, it’s really just a classification based on what the medical establishment understands. When someone throws out that “it’s just a syndrome” argument, they should take a close look at what they’re really saying. Instead of it being an indication that an illness is somehow less valid than others, it’s really more of an indictment of the medical community for not yet figuring it out.

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• Fibromyalgia & Chronic Fatigue Syndrome Glossary
• 10 Important Lifestyle Changes
• Chronic Fatigue vs. Chronic Fatigue Syndrome

What’s the Difference Between a Disease & a Syndrome? originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Thursday, January 28th, 2010 at 06:00:46.

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Here are a group of sayings I found in a women’s health magazine with my comments.

JUST DO IT: Choose to be happy

Can we “choose” to be happy when in so much pain? I believe we can. I have the hardest time being happy when I’m by myself. I feel the pain more when alone, nothing to distract me. After I’ve had a great visit with a friend either in person or on the telephone, my pain is increased. I never knew it took so much energy to talk…

Can we have “gratitude” when fibro fog has closed your brain, you are unable to verbalize your thoughts or can’t remember where you put the milk when it’s not in the refrigerator? Take a deep breath and thank God your brain will eventually tell you where the milk is even if you stumble upon it while taking out the bread for lunch.

credit for this one goes to http://debsfibromyalgiablog.blogspot.com/

When you have fibromyalgia or chronic fatigue syndrome your body has a lot of trouble producing energy. A lot of us take supplements to help give us an energy boost.

One popular supplement is carnitine. About 6 months ago, I wrote about starting it and have a noticeable increase in energy. A reader suggested an update down the road to see if it continued to work for me, because so many of us see effects drop off over time. I thought it was a great idea.

For me, carnitine does still seem to be working. My energy level has stayed pretty consistent since I started it, even through a couple of new health challenges.

I wouldn’t say that carnitine is well studied, but it does have some scientific evidence behind its use. We know that it helps your cells produce energy by breaking down fat. (It’s sometimes used for weight loss, but sadly I haven’t experienced this.) In fibromyalgia studies, it’s been shown to lower pain levels and improve mental health. In chronic fatigue syndrome, it’s been shown to lessen fatigue.

My pain level was low when I started carnitine, so I can’t really say whether it’s helped there or not. I do know that my pain is less likely to flare in response to getting sick or having new sources of pain, but I don’t know whether that’s because of the carnitine.

I consider carnitine one of my most important supplements, so I’m really hoping it continues to work for me.

Here’s more information on carnitine, including typical dosages, side effects, and what foods it’s in:

• Carnitine Profile

It’s important to know certain things before starting supplements. Get started the right way, here:

• What You Need to Know About Supplements

Have you taken carnitine? How did it work for you? Are you still taking it? Leave your comments below!

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More Supplements for Energy

• CoQ10
• Magnesium Malate
• NADH
• SAM-e
• Vitamin B12

Photo &copy Stockbyte/Getty Images

Carnitine for Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Wednesday, January 27th, 2010 at 06:00:33.

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Of the many myths about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), this is probably the most hurtful: the belief that people with these conditions aren’t sick at all, but are just lazy.

I can’t count how many stories I’ve heard about this myth destroying marriages, straining even the closest family relationships and friendships, and destroying the self esteem of the people being falsely accused. It’s too often said that we “just don’t want to work.”

That attitude floors me. I know how hard it was for me to leave my TV news career, and I know how hard I’ve worked to bring in an income from home. Millions of people with FMS and ME/CFS are in the workforce right now, suffering every day to keep their jobs and bring home a paycheck. Those of us who’ve had to leave their jobs talk about how hard it is to have a good self-image and how they’ve had to re-define their very worth as a human being.

Our detractors don’t believe in our pain and fatigue because they can’t see it. I have to ask, can you see the pain and fatigue of someone with cancer? Late-stage AIDS? Yes, those diseases have better diagnostic tests, but the pain and fatigue are just as invisible as ours.

They tend to think if something was really wrong, we’d have better diagnostic tests. They don’t realize that we have a mountain of quality scientific research showing dysfunction and abnormalities in multiple systems: central nervous system, autonomic nervous system, immune system and endocrine (hormonal) system. We know that we can have any combination of the following abnormalities:

• Neurotransmitter dysregulation (low serotonin, norepinephrine and dopamine, high glutamate)
• Abnormal blood-flow patters in the brain
• High activity levels in areas of the brain that perceive pain
• Chronically active immune systems, with elevated cytokines, natural killer cells, RNase L and T cells
• Low levels of stress hormones and dysfunction in the stress system
• Unrefreshing sleep
• Impaired working memory and other cognitive dysfunction

Also, when it comes to diagnostics, they need to realize that neurological illnesses are especially hard to diagnose. Also, to identify infectious agents in the blood, doctors have to know what to look for. How many viruses and bacteria are undiscovered? How many known ones work in ways we don’t fully understand? In addition, many of the tests that do clearly and consistently show abnormalities in studies aren’t used in doctors’ offices because they’re too expensive or the necessary equipment is too scarce.

Lazy? Functioning at all with this mess of things going on takes determination beyond what our critics will ever understand. Anyone who’s watched one of us push ourselves on a good day so hard that we crash for two weeks should be able to see the drive that we do have to keep going. It unfortunate that some people are too blind and punish us for their own shortcomings.

Some skeptics seem to cling to their skepticism no matter what, and this myth is not one that’s likely to die soon. Hopefully, the growing body of evidence will keep making it harder for them to dismiss us as malingerers and will wake some of them up to how hard we work for every single thing we do.

What has this myth done to your life? Your relationships? Your self-esteem? Have you been able to overcome it with someone close to you? Leave your comments below!

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• Debunking Myths: Fibromyalgia is Autoimmune
• Debunking Myths: FMS & ME/CFS Are the Same Thing
• Simple Explanations of Fibromyalgia & Chronic Fatigue Syndrome

Photo &copy Jason Reed/Getty Images

Debunking Myths: Fibromyalgia & Chronic Fatigue Syndrome are ‘Laziness’ originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Tuesday, January 26th, 2010 at 06:00:49.

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Part 5: Gluten Free With Fibromyalgia Series

I recently wrote about how I was facing my second dietary change in a year, and going low calorie on top of gluten free. I’m a couple of weeks into that change now, and I’ve had a few surprises along the way.

As I started checking labels for more than just gluten-containing ingredients, I realized that a lot of the foods I’ve become accustomed to are surprising high in calories. In some cases it’s fairly obvious why — for instance, I’ve replaced granola bars with fruit-and-nut bars, and fruits and nuts have more calories than grains. I’ve also noticed it in less obvious places, though, and I’m assuming more calories get added as manufacturers try to replicate the flavors we’re accustomed to.

This has made me rely even less on packaged foods and more on whole foods, which I know is better overall. Instead of grabbing a snack out of a bag, I’m munching on cucumbers and tomatoes. Instead of eating gluten-free cereal for breakfast, I’m eating an apple. That leads to another problem — needing to go grocery shopping more often, so I have fresh fruits and vegetables in the house. Fortunately, there’s a great little store close to my house that has great produce. I can make a quick trip there between bigger shopping trips, and focus only on that section.

My efforts are already starting to pay off — I’m down 4 pounds since the beginning of the year. I’ve still got a long way to go (I’m hoping for a total loss of 40 pounds this year), but I feel like I’m off to a good start.

Have you tried a weight-loss diet on top of being gluten free (or lactose free, or anything-else free)? What have the challenges been? What has worked for you? Share your stories below!

Also From This Series:

• Going Gluten Free: An Emotional Hit
• Gluten-Free Grocery Shopping
• Gluten-Free Cooking
• Gluten-Free Foods I Like
• Gluten-Free Eating Out

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• Finding Food Sensitivities
• Your Diet for Managing Symptoms
• The Challenges of Eating Health With Fibromyalgia & Chronic Fatigue Syndrome

Photo &copy David Madison/Getty Images

Gluten Free With Fibromyalgia: Calorie Counting originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Monday, January 25th, 2010 at 06:00:11.

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I went to the Main Event in Quartzsite yesterday and the noise just about sent me to the looney bin. The Main Event is a very long tent with booths lining multiple rows. The booths contain merchants selling their product. As I was walking by a Scentsy booth (candles, perfumy) the salesman started talking to me, the booth on its left started splashing water with great force on plexy glass. In the booth across from the Scentsy booth was a man with a microphone selling cookware. The people walking by were all talking. Then my phone rang and it was Dwain. It felt like a Calgone commercial. I’ve been rattled before when there is alot of commotion, but this was the first time I could not think, speak or move. It was a scarry feeling. I hung up the phone and forced myself to move out of the situation. Once I was about 10 feet away, my senses started to return. When I think of it even today, I get tense.

Today I’ve had a productive day. Completed many chores in the morning and had a relaxful afternoon.

We left Sonny and Mary’s at 10 am. We had a wonderful visit with them.

We arrived in Quartzsite, Arizona at 2:30. We did not have difficulty finding a place to park our Montana. I took care of sitting up the inside of the RV. Dwain set up the outside, plus set up the TV and internet satellites. He also got the solar panel frame put together.

Tomorrow we will go the the Big Event tent. It is the last day. We will go in the morning. We want to be home by 1 pm because the AFC and NFC games are on in the afternoon.

Right now too tired to right so will head for bed and write more tomorrow.