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Fibromyalgia & Chronic Fatigue Syndrome
The latest articles on Fibromyalgia and Chronic Fatigue Syndrome from About.com
Debunking Myths: Chronic Fatigue Syndrome or 'Just Tired'?
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:
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! Learn more or join the conversation! NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
Photo © Digital Vision/Getty Images 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. Permalink | Comment | Email this Grocery Shopping With Fibromyalgia & Chronic Fatigue Syndrome
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: 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! Learn more or join the conversation! NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK Photo © George Doyle/Getty Images 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. Permalink | Comment | Email this Doing Housework With Fibromyalgia & Chronic Fatigue Syndrome
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: 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: Learn more or join the conversation! NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK Photo © Annabelle Breakey/Getty Images 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. Permalink | Comment | Email this Pain Treatment as a Human Right 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:
In the U.S., we do have a functioning drug supply system, but in my opinion we're failing on the rest of it.
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. As a pain patient and advocate, I obviously have my biases. I'm happy to say that many of the concerns I've expressed are highlighted in a Time Magazine article: Are Doctors Too Reluctant to Prescribe Opioids? 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: The right to pain treatment -- that's one I'll fight for. Learn more or join the conversation! NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK Pain Treatment as a Human Right originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Saturday, February 27th, 2010 at 06:00:28. Permalink | Comment | Email this Alternative Treatments for Fibromyalgia & Chronic Fatigue Syndrome
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:
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! Learn more or join the conversation! NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK Photo © Mel Yates/Getty Images 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. Permalink | Comment | Email this XMRV & Chronic Fatigue Syndrome: Negative Study #3, But So What?
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!):
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! Learn more or join the conversation! NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
Photo © Indeed/Getty Images 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. Permalink | Comment | Email this Debunking Myths: Fibromyalgia & Chronic Fatigue Syndrome are 'Wastebasket Diagnoses'
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! Learn more or join the conversation! NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
Photo © Jason Reed/Getty Images 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. Permalink | Comment | Email this Click HERE for ImmuneSupport.com Immune Support is the best place I know for information on Fibromyalgia and Chronic Fatigue. They have the latest research on FMS , products to help you cope, and a chat room where you can swap information with other fibromyalgics
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