Fibromyalgia Syndrome Relief

Research Brief

Two studies recently published in Neuroendocrinology Letters suggest underlying factors of the cardiovascular irregularities some research has linked to chronic fatigue syndrome (CFS or ME/CFS).

CoQ10 Study

The first looked at CoQ10 levels between 58 people with ME/CFS and 22 healthy people. It was significantly low in those with ME/CFS and was a predictor of how severe symptoms were, especially concentration and memory problems (brain fog.)

Other research has suggested that low CoQ10 is a predictor of chronic heart failure (CHF), and researchers say this could help explain the link between ME/CFS and CHF. A 2006 study indicated that people with both ME/CFS and CHF die an average of 25 years earlier than people with just CHF.

Researchers suggest CoQ10 supplementation for those with ME/CFS, and they add that since statins (cholesterol drugs) lower CoQ10, people with ME/CFS shouldn’t take statins without CoQ10 supplementation.

Inflammation, Oxidative & Nitrosative Stress Study

Following up on the 2006 study mentioned above, researchers reviewed available literature looking for a possible explanation of earlier death due to CHF (mean age 59 for ME/CFS, age 83 for others.)

Researchers identified 6 possible contributing factors. (I’ve kept this list as simple as possible; those well versed in medical terminology can click on the heading above for more in-depth information.)

1. Effects of chronic low grade inflammation
2. Increased oxidative and nitrosative stress
3. Low levels of antioxidants CoQ10, zinc and DHEA-sulphate
4. Spread of bacteria due to leaky gut
5. Low omega-3 fatty acids, high omega-6 and saturated fat
6. Viral and bacterial infections and psychological stressors (This is the researchers’ grouping, not mine.)

Researchers conclude that these abnormalities may increase the risk of heart problems in people with ME/CFS.

Learn more or join the conversation!

• Getting Started With Supplements
• CoQ10: Effects, Side Effects, Dosages & More
• Fight Inflammation With Your Diet

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The Link Between Heart Failure & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Wednesday, December 30th, 2009 at 16:11:08.

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Setting and reaching goals is especially tough when you have fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS), but that doesn’t mean we shouldn’t set them. It just means we have to customize our approach. I try to set some resolutions every year to keep me focused on my goals, but I try to be realistic about what I can accomplish.

Why Set Goals?

Having something to work toward is good for us. It can give your life some structure, improve your self esteem, and, as you reach a goal, it’s actually therapeutic — you know that feeling of accomplishment? That comes from a release of norepinephrine in our brains, and most of us with FMS and ME/CFS don’t have enough of that particular neurotransmitter.

However, goal setting can backfire if you’re too ambitious. You don’t want to set yourself up for failure, and the negative feelings that go with it.

Setting Realistic Goals

Being realistic means taking into account your limitations and not expecting too much of yourself. For example, if you decide you’re going to lose 5 pounds a week, you’re likely to fail frequently and feel bad about it if you lose 2 or 3. A more realistic goal might be 1 pound a week. You’re more likely to achieve that regularly, and suddenly a 2-3 pound loss is a major victory.

Be sure to consider all of your resources — do you have the time, energy, money, etc. to reach your goal? If not, downsize your expectations.

Here are some goal-setting guidelines:

• Think in baby steps. Break your goal into small components so you can see each step as an accomplishment. That can keep you from being overwhelmed, and also give you more opportunities to feel a sense of accomplishment.
• Build in more time than you think you need. You don’t want to beat yourself up for getting behind, and yet your energy levels are unpredictable. Expect delays and plan for them.
• Write your goals down. Research shows that people who write down their goals are more likely to reach them. Try putting them someplace where you’ll see them regularly.
• Re-evaluate periodically. Every so often, look back at how much you’ve accomplished and see whether your expectations were unrealistic.
• Identify potential barriers and ways to overcome them. Make a list of the things that may keep you from reaching your goal, or things that have kept you from reaching it in the past. Then, find solutions.

Here’s an example: Last year, I had resolved to lose weight. I used Calorie Count, a free service from About.com, to set my goal weight and see how much I needed to lose each week of the year to get there. Because of my illnesses, I decided I’d need to stretch that out over 2 years, so I cut the total loss I wanted for 2009 in half. My goals were entered into the online system, and I looked at them daily when I went on to log my food and enter my weight. I know that I have a sweet tooth and that I’m bad about exercising regularly, and I implemented strategies toward eliminating those problems.

Things were going fairly well, until I started being seriously impacted by a new set of symptoms. After a couple of months, I figured out that I’m gluten intolerant and had to completely re-vamp my eating habits. I really struggled with this, physically, mentally and emotionally, and soon I decided I couldn’t focus on eating both gluten-free and low-cal. I couldn’t function at all on gluten, so the choice was obvious.

So here I am, many months later, with about a 6-pound weight loss for the year. That’s far less than what I’d hoped for, but I accept that I had to alter my goals. Now that I’m pretty well into the swing of my new diet, I feel once again ready to start watching my calories — so yes, once again this year I’m resolving to lose weight. I’m planning to get back into the habit of using Calorie Count and I’m optimistic that I can make more progress this year.

Do you have any resolutions for 2010? What is your plan for reaching them? What helps you reach your goals, and how have you overcome your barriers? How has setting and reaching your goals changed your life? Leave your comments below!

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• Tips for Eating Healthy With FMS & ME/CFS + Readers Respond
• Your Diet for Managing Symptoms
• Exercising With FMS & ME/CFS: How It Can Help Instead of Hurt

Photo &copy Tom Grill/Getty Images

New Year’s Resolutions With Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Tuesday, December 29th, 2009 at 03:00:58.

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We talked here awhile ago about how hard it can be to answer the question, “How are you?” That’s just one of many social situations that become awkward when you’re living with fibromyalgia and chronic fatigue syndrome. I wanted to share with you a comment that Laurie made on that blog to start a conversation about another one of “those” questions. Laurie wrote:

“The ‘What do YOU do’ question plagues my self-esteem so badly. I WAS a nurse and am able to do some volunteer work now as I get a better day. But I hate social situations because of the Fibro -I arrange my whole day around an occasion, finally get myself together, get there, try to smile and then have to play verbal tennis while avoiding questions. Sometimes it’s just not worth it!” ~Laurie

In today’s society, we’re largely defined by what we do for a living. Far too many people equate the worth of a paycheck with the worth of a human being. The first thing we need to do to keep that question from making us cringe is get past that way of thinking ourselves. Easier said than done, I know, but we need to start by seeing the value that we have as individuals — apart from a job, our health, or how much we’re able to do in a day.

You’ve probably heard this from me before, but it helps to have responses in mind so you don’t have to come up with something off the top of your (probably foggy) head. Think about the question for a moment — what do you do? Now craft an answer around that. Do you volunteer? Are you raising children? Do you have a hobby? Whatever you do, that’s your answer.

I’m a firm believer that humor always helps. If you look uncomfortable or overly serious talking about something, it has a dampening effect on a conversation. However, if you give them a smile and say, “I see lots of doctors and otherwise enjoy a life of leisure,” you’ve told them you’re sick without being a big downer. The key is that you’re comfortable with yourself and confident in what you’re saying. If you’re not really comfortable or confident, fake it.

This is a little different from my take on “How are you?” because the question is different. “How are you?” can come from anyone you encounter, from your best friend to a store clerk. Different levels of familiarity warrant different responses. On the other hand, “What do you do?” is usually a question that comes just after an introduction. These people don’t need (or want) great insight into your life — they’re just making small talk until they either go mingle elsewhere or find common ground to form the basis of a real conversation. This one is always a surface question and it doesn’t need more than a surface answer.

How does “What do you do?” make you feel? How do you respond, and how does it seem to work? Leave your comments below!

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• Responses to “How Are You?” With Fibromyalgia & Chronic Fatigue Syndrome
• Improve Your Coping Skills
• Acceptance & Why It’s Important to Your Health

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Answering “What Do You Do?” With Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Monday, December 28th, 2009 at 06:00:27.

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How are you feeling, post-Christmas? It’s an exhausting day even for healthy people, and for those of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), it’s almost guaranteed that we’re going to crash afterward. I say that not because I’m a pessimist, but because I’m a planner.

For instance, I have a day-planner program on my computer that helps me stay on track (otherwise, it all gets lost in the fog!) The day after Christmas is about the only day of the year that’s blank. Nada. Nothing. That’s a day to be on the couch. I refuse to clean up the Christmas mess, I refuse to socialize, I refuse to do anything but lay on the couch, watch some mindless TV, and recover. December 27, I might allow myself a couple hours of productivity, if I feel up to it. I planned my entire season carefully, so I’m hoping for a mild crash like I had last year, instead of a massive one like 2007.

The reason I was able to plan so well is that a long-time fibromite posted her survival strategy in the forum a couple of years ago. To plan your next holiday season (or other major event) better, bookmark this:

• The Fibromyalgia & Chronic Fatigue Syndrome Holiday Survival Guide

If you’re like me, you’ll forget all about that long before you need it. To make sure you remember, you can sign up for my free newsletter, or put a note to yourself in your calendar or day planner to read that article on September 1. Having a good plan makes all the difference in the world.

Meanwhile, take it easy and allow your body to recover! To help pass the time, visit the Fibromyalgia & Chronic Fatigue Syndrome community forum so we can all recover together!

How did you fare this holiday season? Share your story (good or bad) below!

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Suggested Reading:

• Pacing 101: Get More Done by Slowing Down
• The Fibromyalgia Impact Questionnaire: How Do You Rank?
• 10 Important Lifestyle Changes for Fibromyalgia & Chronic Fatigue Syndrome

Photo &copy Judith Haeusler/Getty Images

Fibromyalgia, Chronic Fatigue Syndrome & the Post-Christmas Crash originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Saturday, December 26th, 2009 at 02:00:49.

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The holiday season is especially difficult for those of us with chronic illnesses like fibromyalgia and chronic fatigue syndrome. To help you get through it, here’s an index of holiday resources for you:

• Holiday Depression
• Survive Holiday Shopping
• Stop Before You Want to Stop
• Food Sensitivities
• Alcohol Intolerance
• Christmas-Day Gameplan

I hope you have a Merry Christmas!

Learn more or join the conversation!

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Photo &copy Judith Haeusler/Getty Images

Holiday Coping Resources for Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Wednesday, December 23rd, 2009 at 06:00:55.

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You may have noticed I talk a lot about planning this time of year. That’s because it really works for me, as I attempt to enjoy the holiday season with fibromyalgia. I start planning early, and revise as needed, to get to Christmas without wiping myself out — but it doesn’t end there. I have to think ahead about Christmas day as well.

I have young kids — my son is 7 and my daughter’s 5. That means Christmas day starts early. After we’re done unwrapping gifts at home, we generally get together with my husband’s immediate family to have brunch and exchange gifts. Then, we go to his grandma’s house for present opening with aunts, uncles and cousins; some activities; dinner; and then usually some kind of game that can last until all the little kids (and some of the adults) are falling asleep on their feet.

It’s a fun day, and I don’t want to miss any of it. Sometimes, I’ve had to. A couple of years ago, I stayed home and took a 3-hour nap while my family went off to have fun. Last year, I planned better and fared better as well. Here’s what I’m planning for this year:

• Lots of scheduled down time in the days before Christmas (which is possible because of my earlier planning.)
• Strict dietary control (for my gluten intolerance) in the days before, and on Christmas day until after dinner, so the symptoms don’t hit during the festivities. I can’t expect myself to abstain all day!
• Giving myself permission to slip away to a quiet corner and rest if I need it.
• Lists, lists, lists! I’ll have prepared lists for everything we need to take when we leave home, and I’ll also make a list of everything my kids take with them.
• Organization. As we all rip open presents that will need to be taken home, in a small room with 20 or so other folks, I’ll try to keep everything in one area so we’re not searching high and low for things at the end of the evening.
• Keeping key meds & supplements on hand. I’ll take a supply of Vicodin, Flexeril, DHEA & theanine with me, so I can get on top of problems fast.

What do you do to help you get through the big day? What mistakes have you made? Share your holiday stories below!

Learn more or join the conversation!

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• 10 Important Lifestyle Changes for FMS & ME/CFS
• How to Pace Yourself
• Understanding Brain Fog

Photo &copy Stockbyte/Getty Images

Celebrating Christmas With Fibromyalgia: My Gameplan originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Tuesday, December 22nd, 2009 at 06:00:07.

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Pain in the neck, hips, knees, hands and feet. Getting cold a lot. Being tired all day. Brain fog. Problems swallowing. These symptoms are just par for the course when you have fibromyalgia. But what does it mean when those symptoms get worse and worse while other fibromyalgia symptoms are well controlled?

My rheumatologist wanted an answer to that question a few weeks ago, because it just didn’t make sense. She ordered blood tests for several forms of arthritis and also Hashimoto’s thyroiditis. I tested positive for anti-thyroid antibodies, so Hashimoto’s was the lucky winner. Thyroid disease tends to be more common in fibromites, so this isn’t a big surprise.

In Hashimoto’s, the immune system has malfunctioned and decided a particular protein in the thyroid gland is a foreign invader. It then forms antibodies that begin to attack the gland and destroy it. Typically, people don’t know this is going on until their thyroid is so damaged that it impacts thyroid-hormone levels, and typical treatment means taking thyroid hormone to normalize levels.

I have fibromyalgia, though, which means I’m never “typical.” I’ve been treated for under-active thyroid for about 8 years now (with Hashimoto’s ruled out a couple of times) and my levels have stayed in the normal range. The symptoms that have been bothering me aren’t related to underactive thyroid, they’re related to the autoimmune activity. My doctor, being a specialist in autoimmune diseases that cause pain, is taking a non-typical approach to my treatment — she has me on a drug called Plaquenil (hydroxychloroquine), which is normally used to treat lupus and rheumatoid arthritis. She told me she’s used Plaquenil in other patients with Hashimoto’s with good results.

Plaquenil changes the way the immune system works but doesn’t suppress it, like many autoimmune treatments do. I started on it about a week ago and so far I’m tolerating it well (surprise, surprise!) I think I’m feeling a little better, but the drug doesn’t take full effect for up to 2 months, so it’ll be awhile before I know for sure.

If you’re diagnosed with fibromyalgia or chronic fatigue syndrome and you’ve never had your thyroid hormone tested, you should. The symptoms are so similar that when my fibro symptoms first started up, I had my doctor check my thyroid and was stunned when it was fine.

Another lesson here is to pay attention to your symptoms. The pain I’ve had for the past few months has been different from my fibro pain. I usually get burning, stabbing pains that move around. The Hashimoto’s pain is deep in the joints and really achy. I’ve also been extra tired during the day, and brain fog symptoms that I haven’t had in months were creeping back — however, without that packed-in-cotton feeling in my head.

All of us should be familiar with the symptoms of thyroid disease. Don’t get paranoid about them — remember that most of these symptoms are normal in us — but have them tucked away in your mind in case you start having new symptoms or a cluster of symptoms that’s getting worse while your others are stable. Here’s a great article by Mary Shomon, the About.com Guide to Thyroid Disease, that gives you the basics of several thyroid problems:

• Thyroid Disease Symptoms & Risk Factors

Do you have a thyroid problem? What symptoms does it cause? Is it well controlled? What medications have you taken for it? Leave your comments below!

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• Fibromyalgia & Comorbid Conditions
• A Simple Explanation of Fibromyalgia
• Fibromyalgia Treatment Options

Photo &copy A.D.A.M.

Fibromyalgia & Hashimoto’s Thyroiditis originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Monday, December 21st, 2009 at 06:00:27.

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The U.S. Department of Health and Human Services (HHS) has formed a work group to study several aspects of XMRV, the retrovirus that preliminary research has recently linked to both chronic fatigue syndrome and prostate cancer.

The group will conduct research in 3 phases:

1. Standardize & validate lab tests for XMRV
2. Determine the prevalence of XMRV in the general population, the blood supply, and in people with chronic fatigue syndrome
3. Understanding XMRV transmission methods and possible links to human disease

It’s encouraging to see work going on at this level — now, we just have to hope for quality studies with conclusive results. We haven’t always gotten that from our government agencies, but the potential threat to the national blood supply ought to garner more serious scientific attention that chronic fatigue syndrome has had up until now.

Does this work give you hope? Are you afraid that the studies on chronic fatigue syndrome will be somehow tainted by the CDC’s take on the condition? Leave your comments below!

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• The XMRV Discovery Series index
• Understanding Chronic Fatigue Syndrome
• Chronic Fatigue Syndrome Symptoms Checklist

Photo &copy Andersen Ross/Getty Images

Studying XMRV in Chronic Fatigue Syndrome, the Population & the Blood Supply originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Saturday, December 19th, 2009 at 06:00:46.

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