Fibromyalgia Syndrome Relief

When conventional medicine fails — as it often does for fibromyalgia and chronic fatigue syndrome — you have to start looking at what else is out there. When you’re trying to learn about complementary/alternative medicine, known as CAM, it’s tough. Which information is reliable? Which studies are of high enough quality to matter?

A new survey by a highly respected team of researchers aimed to help us identify which CAM treatments are most likely to help us, in order to determine where researchers should put their efforts. Looking through the available research, they did report that the overall quality was less than ideal. However, they determined that these treatments are the most promising prospects:

• Acupuncture
• Several types of meditative practice
• Supplements: magnesium, carnitine, SAM-e

I’ve tried all of those except for SAM-e, and they’ve all helped me improve tremendously. They’re only part of my treatment/management regimen, along with other supplements, lifestyle changes, massage, etc., but I wouldn’t give any one of them up. I’ve also heard from a lot of people that SAM-e is great. Of course, we’re all different, but it helps to know which way the research is leaning.

In another recent survey specifically on acupuncture for fibromyalgia, researchers concluded that acupuncture can provide temporary pain relief, but that results were too inconsistent to recommend it for everyone.

Which of these treatments have you tried? What has worked, and what hasn’t? Have other CAM treatments helped you? Leave your comments below!

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• Getting Started With Supplements
• 10 Important Lifestyle Changes
• Massage & Other Bodywork

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Alternative Treatments for Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Tuesday, March 9th, 2010 at 06:00:25.

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Could we soon be leaving behind the assumption that anyone wanting opiate painkillers is or could soon be an addict? President Obama’s new director and deputy director of the White House Office of National Drug Control Policy (ONDCP) and are saying some things that make me optimistic.

The director is R. Gil Kerlikowske, and he says the “war on drugs” is over. That doesn’t mean we won and there’s nothing left to fight — he’s trying to end the war-on-drugs mentality that drug addiction is a criminal matter, and instead focus on the public health issues of identification, prevention and treatment of addiction.

The deputy director is A. Thomas McLellan, PhD, and he has 35 years experience in researching addiction treatment. In a recent JAMA interview, McLellan said some things that make me hopeful for pain patients:

“There are some very good, clear indicators that addiction has an at-risk period. It is basically adolescence, somewhere between age 10 and 21. If you don’t become addicted to tobacco, alcohol, cocaine, or opiates by that time, you probably are not going to be.”

Doctors need to know this, so they’ll stop denying pain medications to those of us who are well north of the drinking age and have never had a substance abuse problem!

“One of the things we’re going to be doing is urging medical schools, nursing schools, and pharmacy schools to devote courses to substance use disorders. It’s very important to be clear that substance use disorders are public health problems. . . . This is one of those areas that physicians, nurses, and pharmacists are not adequately trained in.”

Finally, someone’s talking about the proper role of the medical community — an educated group that can recognize and head off substance abuse in the early stages, rather than a law enforcement watchdog group that creates a barrier between patient and treatment.

JAMA asked McLellan specifically about opiate abuse, which is currently the second leading cause of death in the U.S. While lowering the rate is obviously a major concern, he says the goal is to do so without compromising pain treatment. To come up with policies, the ONDCP is working with the Department of Health and Human Services, the National Institute on Drug Abuse, the FDA and large medical societies.

McLellan outlined 3 areas that need improvement:

1. Patient education: making sure patients know the low risk of addiction and proper use of these medications, to alleviate fears of becoming addicted.
2. Doctor-patient contracts and communication about medication management and storage, and also about the risks of sharing their pain meds with other people.
3. Prescription drug monitoring through electronic health information systems to prevent doctor shopping.

He adds that there is a role for law enforcement when it comes to doctors who are willfully violating the law. However, he says most doctors aren’t doing anything illegal and that clearly outlined policies will help them prescribe these drugs without fear of legal or professional repercussions.

I hope these changes come swiftly and that doctors start getting the message that responsibly prescribing pain medications won’t create untold numbers of addicts, get their license to practice revoked, or land them in jail. It could also help change the public perception that anyone who takes opiates long term “must” be an addict.

What do you think about these policies? Are they a good place to start, or too little too late? What else do they need to do to ensure pain patients get proper treatment, while keeping drugs away from abusers? Leave your comments below!

Source: JAMA, The Journal of the American Medical Association

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• Drugs for Fibromyalgia Treatment
• 7 Types of Fibromyalgia Pain
• Pain Treatment as a Human Right

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New Drug-Control Policy Could Benefit Fibromyalgia Patients originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Monday, March 8th, 2010 at 06:00:06.

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Ah, housework — that constant nagging bundle of stuff we all need to take care of, at one point or another! Fibromyalgia and chronic fatigue syndrome make sure that we don’t have the energy to keep up on it, and that when we finally get around to it, it’s going to hurt and wear us out — fast!

I know keeping the house clean (or at least getting it there from time to time) will always be a struggle for me, but I’ve stumbled on some things that help me get it there more often and keep it a little closer to decent more of the time. My list of suggestions is here:

• Doing Housework With Fibromyalgia & Chronic Fatigue Syndrome

There’s also a Readers Respond attached to this, so you can leave your own tips and learn from everyone else!

This article is the latest in what’s currently a 4-part series on day-to-day living with these conditions. The other topics are:

• Laundry: Easing the Strain
• Cooking Tips
• Grocery Store Survival

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Doing Housework With Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Saturday, March 6th, 2010 at 06:00:40.

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This one can come from anywhere, but it seems most prevalent in the medical community — “That’s just what they tell you when they don’t know what’s wrong.” The belief is that fibromyalgia and chronic fatigue syndrome aren’t “real” diagnoses: doctors just give them to people they can’t diagnose properly (or who don’t have a real problem), so the diagnosis is meaningless.

This myth is partially true, unfortunately, but only when you’re dealing with doctors who give these diagnoses but don’t understand them. They may be perplexed about what’s going on and decide, “I can’t find anything causing this pain, so it must be fibromyalgia,” or “There’s no reason for her to be this tired, so it must be chronic fatigue syndrome.” These doctors generally aren’t familiar with the full diagnostic criteria, and they don’t always go through all of the steps necessary to rule out other possibilities. These guys are obviously doing a big disservice to their patients, and they’re hurting the rest of us as well.

What the medical community as a whole needs to realize is that these conditions do have very specific diagnostic criteria, and when they’re followed, it’s not a “wastebasket diagnosis.” We’ve had studies showing that the criteria do successfully separate people with our unique symptom clusters from people with other medical problems, and believe me, when we get together and compare notes, it’s pretty clear that we’ve got far more in common than just pain and/or fatigue without an obvious source! We discover commonalities in sleep problems, irregular temperature fluctuations, hair loss, sensory overload, allergies and sensitivities, word loss, short-term memory problems, intestinal issues, vision, etc. You’re not going to find those widespread similarities in people with an invalid diagnosis.

I don’t know how I’ve been so fortunate, but I have yet to have a doctor question my fibromyalgia diagnosis. I know the day will come, and when it does, I have a response prepared: “Are you too lazy to keep up on the research, or too stupid to understand it?” Seriously, folks — if we can all dig up scientific studies and understand them through severe brain fog, it takes a special breed of incompetence not to see that there’s something very legitimate going on here.

We’ve got well-documented dysfunction in our central and autonomic nervous systems, immune response, hormones, blood flow, cellular reproduction and more. These doctors need to update their thinking and stay on top of things, because by sticking with dark-ages thinking they’re violating their oath to do no harm.

Have you run up against this myth? Do people close to you believe it? Leave your comments below!

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• Diagnosing Fibromyalgia & Chronic Fatigue Syndrome
• Fibromyalgia Symptoms List
• Chronic Fatigue Syndrome Symptoms List

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Debunking Myths: Fibromyalgia & Chronic Fatigue Syndrome are ‘Wastebasket Diagnoses’ originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Thursday, March 4th, 2010 at 06:00:18.

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In my article on grocery shopping last week, I asked you to share your own tips, and boy did you! Thank you for all of the wonderful, helpful comments.

Several people brought up a really great idea: Have perishables bagged together & put in the car where they’re easy to grab first. That way, you can get those taken care of and leave the rest for when you’ve got the energy or some help. Great tip! I’m going to do this, for sure.

A few people also brought up taking someone to the grocery store, and waiting while a spouse or children went down the aisles to get things. This is great, too, and once my kids are old enough I think it will be great to have them do the running. (For now, I do best when I don’t have them with me because they add to the chaos.)

One reader asked if anyone does online grocery shopping, and several people commented that they do. This is a great option for those who have it available! Usually, you order online, schedule a pick-up time, then just drive up and have them load your car. Do expect to pay a bit for this service, though.

Another reader had a question that I think could apply to a lot of us:

“Besides the size of ‘Superstores’ (where the best bargains are), I have extreme sensitivity to bright lights. They shatter my serenity, often increase pain & make me shaky and irritable. Any thoughts? Does anyone else have this problem?”

I have light sensitivity as well (although it sounds milder than hers.) My ideas for this issue are a hat to help shield the eyes or maybe lightly tinted sunglasses. Anyone else have suggestions?

Also, for anxiety in general, I take DHEA and theanine. I always carry some in my purse and I try remembering to take it before shopping or other anxiety-inducing situations. Theanine is in tea (both black and green), so I frequently sip on an iced tea when I’m in a situation that could become stressful.

If you missed it, here are the original article and the Readers Respond with all the great comments:

• Grocery Shopping With Fibromyalgia & Chronic Fatigue Syndrome
• Readers Respond: Grocery Shopping Tips

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• Easing the Strain of Laundry
• Readers Respond: Laundry Tips
• How to Pace Yourself

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Grocery Shopping With Fibromyalgia & Chronic Fatigue Syndrome: Reader Tips & Questions originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Wednesday, March 3rd, 2010 at 06:00:22.

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It’s hard to avoid cooking, but I sure wish I could! I was OK with it before I had fibromyalgia, but now the very thought of it stresses me out.

If I’m doing something really simple and familiar, cooking’s not too bad. When I have to keep track of multiple things, or go through a multi-step process, I can forget what I’m doing and get overwhelmed. When your family is waiting for dinner and you find yourself lost in the brain fog and on the verge of ruining it all, it can definitely trigger your anxiety!

In my early fibro days, when I was still working full time, I’d pick up the kids from daycare (where there was unbearable noise), drive home in heavy traffic, then have to cook dinner while the kids were clamoring for my attention. I was already trying to deal with the stress, pain and fatigue caused by work, so dinner regularly pushed me over the edge. It was common for me to take Vicodin and collapse on the couch, twitching in pain, before I even got a chance to eat.

Things are a lot better now, but I’m still trying to shake off the emotions I learned to associate with cooking. For a long time, I relied heavily on microwavable entrees and eating out, but since I’ve had to go gluten free, I’ve had to be more consistent about actually cooking. I’ve found some things that help, and here they are for you:

• Cooking With Fibromyalgia & Chronic Fatigue Syndrome

At the end of that article, there’s a Readers Respond where you can learn from other people and leave ideas of your own. To share your cooking mishaps and how it makes you feel, leave a comment below!

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• Easing the Strain of Laundry
• Grocery Shopping Tips
• 10 Important Lifestyle Changes

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Cooking With Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Monday, March 1st, 2010 at 06:00:44.

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I’m starting to feel like a broken record — a third study European study has failed to uncover a link between XMRV and chronic fatigue syndrome. Is this the nail in the coffin of this theory? Was all the hype and excitement for nothing? Are we back to square one?

Not in the least. This Dutch study, like the 2 British ones before it, didn’t even attempt to replicate the original XMRV study from the Whittemore Peterson Institute (WPI). It was the first to use similar testing methods, but the inclusion criteria were rather different — which could mean that we’re looking at 2 radically different populations.

For those of you who really know your chronic fatigue syndrome history, I’m about to use a phrase that will likely make your blood pressure spike — Oxford criteria. Yep, these are old patient blood samples, collected from people diagnosed under the Oxford criteria.

OK, for the rest of you, some history (and for this information I have to thank Mary Schweitzer, who’s an amazing resource for these things!):

• In the early days of chronic fatigue syndrome, we had the Holmes definition. It was an attempt to put forth a common definition of and diagnostic criteria for this condition. It would later be replaced with Fukuda, which provided the definition and criteria still in prevailing use today.
• Between Holmes & Fukuda, there was Oxford. Unlike the others, Oxford only allowed for psychologically based symptoms, including depression, rather than physiological symptoms. Oxford’s legacy is the highly controversial “biopsychosocial” approach to chronic fatigue syndrome.

The original XMRV study, which showed a nearly 68% infection rate, was done on samples from people who fit both the Fukuda criteria AND the more rigorous Canadian criteria. I don’t care whether these groups of people are given the same label — they’re not the same! This is more muddying of the water by scientists with completely different goals.

It’s incredibly frustrating to watch this work go on. First, we had potentially groundbreaking but preliminary findings from the WPI, which prompted calls for more research to confirm the link and determine its significance. Now, while the eyes of the scientific world are on chronic fatigue syndrome, we have 2 “follow-up” studies that used methods that aren’t even proven to detect XMRV and a 3rd that’s essentially studying a different condition. In these eyes of all those doctors who don’t know much about this topic and will only glance over the titles and “conclusion” sections of the abstracts, this is a major blow.

It’s easy to latch onto a new finding like XMRV and cling to it desperately as “the” answer, but I’m not doing that. Those of us who truly want to know what’s behind chronic fatigue syndrome need quality research and comparable studies, looking at the same types of patients with the same methods. Whether the WPI’s research was flawed or dead on, let’s prove it so we can move on, either to potential treatments or other theories. Let’s quit wasting time (and money, and people’s lives) with politically motivated “science” that creates confusion and prolongs the suffering of millions who needed help a few decades ago.

I know I’m not the only one who needs to vent about this — leave your comments below!

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• XMRV & Chronic Fatigue Syndrome
• Treating Chronic Fatigue Syndrome
• The Monster List of Chronic Fatigue Syndrome Symptoms

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XMRV & Chronic Fatigue Syndrome: Negative Study #3, But So What? originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Tuesday, March 2nd, 2010 at 06:00:39.

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It’s amazing how hard some things hit you. I saw the title of a BMC Medicine article titled “Access to pain treatment as a human right,” and I started to cry. Actually reading the abstract brought up a complex mixture of emotions that included anger, sorrow and frustration.

The article is from the organization Human Rights Watch, which, according to its own mission statement “is dedicated to protecting the human rights of people around the world. . . . We challenge governments and those who hold power to end abusive practices and respect international human rights law.”

In a nutshell, it talks about the nearly 50-year-old human rights law governments around the world adopted in order to work toward universal access to narcotic pain treatments. Today, Human Rights Watch finds governments have fallen down on the job.

The abstract says:

“Significant barriers to effective pain treatment include: the failure of many governments to put in place functioning drug supply systems; the failure to enact policies on pain treatment and palliative care; poor training of healthcare workers; the existence of unnecessarily restrictive drug control regulations and practices; fear among healthcare workers of legal sanctions for legitimate medical practice; and the inflated cost of pain treatment. These barriers can be understood not only as a failure to provide essential medicines and relieve suffering but also as human rights abuses.”

In the U.S., we do have a functioning drug supply system, but in my opinion we’re failing on the rest of it.

• Policies are set by medical institutions or individual doctors and vary drastically.
• Our healthcare workers aren’t well trained at recognizing addictive behaviors and their perception of abuse risk by pain patients is far higher than the actual risk, according to multiple studies.
• Our drug control regulations and practices, again, vary widely; some are far too stringent and some are so lax as to allow for abuse.
• Our doctors are scared to prescribe pain meds because they’ve seen colleagues face criminal charges and loss of license.
• And I don’t think I need to tell anyone with a chronic illness about the cost of health care.

Leaving millions of us to suffer with pain from fibromyalgia, chronic fatigue syndrome and a host of other undertreated, painful conditions is a violation of the doctor’s oath to do no harm and a violation of international human rights law. Wouldn’t it be nice if we started to see some enforcement?

Someone commented here once that we consider it compassionate to put animals to sleep when they’re in pain, but we’ll let human beings suffer indefinitely. I hope Human Rights Watch will push for the humane treatment of people with chronic pain, and I hope at least some governments will do something about it.

I’m fortunate — I have doctors who prescribe pain medications for my pain (novel concept!), even though I’m in a state with especially restrictive regulations. However, I’m always afraid my luck will run out with the next refill request, and it scares the heck out of me. When I think of all the people who are in pain like me and can’t even get the occasional Vicodin, I can’t help but cry.

I’m planning to forward the Human Rights Watch article to my elected representatives. If you’d like to do the same, here it is:

• Access to pain treatment as a human right

The right to pain treatment — that’s one I’ll fight for.

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Pain Treatment as a Human Right originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Thursday, February 25th, 2010 at 06:00:28.

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Grocery shopping wasn’t fun when I was still pretty healthy. After fibromyalgia hit, it didn’t just get harder — it turned into a much-feared ordeal that was likely to leave me not just hurting and exhausted, but panicky and shaking.

A trip to the grocery store seems to require all the skills that those of us with fibromyalgia and chronic fatigue syndrome lack. You’ve got to have the direction sense and focus to first drive yourself to the store, and then to find your way around inside; you’ve got to follow a list (if you remembered to bring it), which challenges the short-term memory; your brain’s got to take in a lot of visual and audio signals, which can overwhelm us; you’ve got to multi-task and make a ton of decisions, which can cause anxiety and confusion. And as if that weren’t enough, you’ve got to expend a big chunk of that day’s energy and probably amp up your pain several notches at the same time.

Let’s face it — grocery shopping is never going to be a cake walk for us. We can, however, do some things to make it easier. I’ve made a list of the things that help me and the things I’ve heard from other people, and I hope some of the suggestions help you. You can see them here:

• Grocery Shopping With Fibromyalgia & Chronic Fatigue Syndrome

At the end, there’s a Readers Respond link so you can share your own tips. If you’d like to share your grocery shopping horror stories, leave a comment below!

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• Easing the Strain of Laundry
• How to Pace Yourself
• Cut Clothing-Related Pain

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Grocery Shopping With Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Thursday, February 25th, 2010 at 06:00:50.

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When an illness is named for its chief symptom, it sounds like that symptom is the only thing that’s wrong. Thus, the name “chronic fatigue syndrome” perpetuates the myth that people who have it are “just tired” and not really “sick” at all.

This myth is like salt in the wound to people who are disabled by chronic fatigue syndrome. Not only does it go way beyond a single symptom, the word “fatigue” doesn’t begin to accurately portray the utter exhaustion and lack of energy these people have. Here are some of the consequences of this pervasive myth, along with the truth:

• People say, “Just get some rest — you’ll feel better.” FACT: Multiple sleep-related abnormalities cause unrefreshing sleep, so no amount of rest actually relieves the fatigue.
• People say, “Yeah, I get tired, too.” It’s true that everyone gets tired, and that most people in our society are sleep deprived. Many people feel “chronically fatigued.” FACT: Those people would feel better if they took a restful vacation or improved their sleep habits, and fatigue is generally their only symptom. People with chronic fatigue syndrome deal with up to 50 other symptoms — including cognitive dysfunction (brain fog) that can be as debilitating as fatigue, flu-like body aches, sore throats . . . and the list goes on and on. See Chronic Fatigue vs. Chronic Fatigue Syndrome.
• People say, “You should get out more,” or “exercise more,” or “snap yourself out of it.” FACT: Being active causes symptoms to worsen, sometimes dramatically. (See Debunking Myths: ‘More Exercise’ for Fibromyalgia & Chronic Fatigue Syndrome.) As for snapping out of it, would people spend their savings or go into debt, lose their jobs, isolate themselves from family and friends, and give up their dreams and independence if they could just “snap out of it”? The people who come here looking for answers are desperate to find something that helps, and they’ve often tried dozens of different treatments.

This myth is especially damaging to people with chronic fatigue syndrome, because it causes the illness itself to be dismissed as people just making a big deal out of something everybody deals with. In an attempt to get away from this myth, researchers and advocates have tried using different names for the condition, but so far none have reached acceptance in the medical community because of controversy over how medically accurate they are. Until we understand this condition better, we’ll likely be stuck with the name and the myth that comes with it.

How has this myth effected you? Do people in your life believe it? Leave your comments below!

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• A Simple Explanation of Chronic Fatigue Syndrome
• Diagnosing Chronic Fatigue Syndrome
• Living With Someone Who Has Chronic Fatigue Syndrome

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Debunking Myths: Chronic Fatigue Syndrome or ‘Just Tired’? originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Wednesday, February 24th, 2010 at 06:00:54.

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