Chronic Pain Sufferers Skeptical of Their Government

This survey of chronic pain sufferers is interesting. My only surprise is that some of the statistics aren’t closer to 100% of pain sufferers! I’m bolding a few things I found most interesting, including the link if you would like to participate in the survey.

Chronic Pain Sufferers Skeptical of Their Government

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Readers of the National Pain Report are skeptical about their government and its role in pain management.

In April, we asked them some basic questions about the state of pain management today, and since almost all (99%) who answered online described themselves as chronic pain patients, their frustration was palpable.

When asked if the pain patient is being adequately considered in the discussion of how to address the chronic pain issue in the United States, more than four out of five (81%) said they either moderately or strongly disagreed.

When we asked about government’s role, the skepticism we mentioned was in full flower:

84% said that federal regulatory agencies like the Food and Drug Administration and the Drug Enforcement Administration are part of the problem in chronic pain treatment, and 72% said the same about elected officials.

Reader Nancy Ribok lamented the lack of education in pain management when she wrote, “doctors need to be educated on pain management, and doctors need to educate patient about pain medication and how and when to use.”

Readers who participated were less critical about their own physicians. They were equally split on whether their doctor was part of the solution (33%), part of the problem (26%) or both (27%)

We asked about the National Pain Strategy which represents “the United States first strategic plan for transforming and advancing pain care, education, research and prevention,” according to Dr. Sean Mackey, Chief of the Division of Pain Medicine at Stanford University’s School of Medicine.

The question was: “Is the National Pain Strategy asking the right questions about how to address the pain issues in the U.S.?”

Half agreed and half didn’t.

“I understand the guarded skepticism that the person living with chronic pain has about the state of pain management today and of the National Pain Strategy,” said Dan Bennett, M.D. who is Chairman of The National Pain Foundation. “However, if we are going to have the needed global conversation about acute and chronic pain, the participation of the person living with pain and those who are concerned for them is crucial.  Pain is personal.  The conversation must start; it is long overdue.  The National Pain Strategy should be thought of in that context.   We urge people living with pain, those who care about them, and advocate groups in all areas to actively participate in the public comment process.”

The National Pain Report conducts occasional readers’ surveys to gauge reaction (and also to help decide what topics to cover).

Reader Beth McDonald had a message for us and other media members when she wrote on coverage of the pain medication issues:

“To the media I would try to report on a chronic pain sufferer to enlighten the public on how pain sufferers try every possible means of pain relief before needing pain medication and why it is so vital to many in order to function.”

The people who answered the survey were mostly women who listed back pain (78%), Fibromyalgia (46%), Neuropathy and Osteoarthritis (both 44%) and Migraines (37%) as the leading causes of their pain.

We will leave the survey open for a while longer, in case you want to participate (click here)

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Is Fibromyalgia a Mitochondrial Disorder?

mitochondria

Given my very limited knowledge of science and how the body works, I’ve been wondering for awhile if the mitochondria could be a part of what causes (or maybe fuels?) fibromyalgia. It looks like I’m not the only one wondering that and some researchers are starting to research this very thing. This article details several small studies done recently into whether FM is a mitochondrial disorder. I found this particularly interesting.

“Significant reductions in mitochondrial enzyme activity (in complexes I, II, III and IV) were found in the FM patients but not the healthy controls. That, in combination with reduced levels of mitochondrial proteins, indicated that mitochondrial functioning was indeed significantly reduced. So were CoQ10 and ATP levels and mitochondrial DNA levels. In fact, every aspect of mitochondrial functioning tested was found to have taken a significant hit in the FM patients.

“That suggested mitochondrial damage had occurred and that finding set the stage for the next test. Since damaged mitochondrial DNA are known to spark an inflammatory response, the researchers asserted they should also be able to find evidence of inflammation in the skin – and they did. Double the levels of the pro-inflammatory cytokine TNF-a were found in the skin of the FM patients.

“Not only were the increased cytokine levels strongly associated with reduced mtDNA – suggesting that the mitochondrial problems had indeed sparked the inflammation – but they were highly correlated with the pain levels in FM (p<.001) as well. That suggested the mitochondrial problems could be causing or contributing to the pain the FM patients were experiencing.

“A threefold increase in TNF-a levels in the saliva and the blood collected from the biopsy area relative to the healthy controls suggested that widespread or systemic inflammation and oxidative stress was present as well. The FM patients looked pretty much like a soup of mitochondrial dysfunction, oxidative stress and inflammation.”

And this bit makes me want to try adding CoQ10 back into my daily supplement routine. I did it years ago and didn’t notice much of a change, but maybe it’s worth trying again.

“CoQ10 is a particularly intriguing nutrient given its ability to both boost ATP production and reduce levels of oxidative stress. C0Q10 levels are reportedly low in many neurodegenerative disorders including Parkinson’s disease, diabetes, fibromyalgia and cancer.

“A fibromyalgia study by this Spanish research group found a 50% reduction in COQ10 levels in FM. With dozens of mostly small studies examining mitochondrial dysfunction and CoQ10 levels/supplementation in FM and other disorders under it’s belt, this Spanish research group has been leading the way in this area.”

Read the full article here.

Brain Abnormalities Discovered in Patients with Chronic Fatigue Syndrome

cfs brain

The red, blue, and green spheres correspond to size and locations of increased cortical thickness in the right occipital, precentral, and middle temporal regions, respectively. The green arrows also point to the middle temporal region of increased thickness. Credit: Radiological Society of North America

 

A new study by Michael Zeineh of the Stanford University School of Medicine now proves that chronic fatigue syndrome (CFS) is not hypochondria or our imagination, it is a real disease. Zeineh and his team discovered brain abnormalities in CFS patients that will hopefully help doctors to better treat this debilitating disease. There is a lot of cross over between CFS and fibromyalgia, as anyone who suffers from one or both of these devastating diseases will tell you. Patients with one of these diseases (or both) battle chronic disease, chronic pain, micro-inflammation, environmental sensitivities (such as light, smells, foods, weather, etc.) and much more every single day. So the next time you think that just because you can’t see our illness it isn’t real, think again. Thanks to researchers like Zeineh we are slowly but surely getting proof that our diseases are real and terrible.

The entire article about Zeineh’s research continues below.

Study finds brain abnormalities in chronic fatigue patients

An imaging study by Stanford University School of Medicine investigators has found distinct differences between the brains of patients with chronic fatigue syndrome and those of healthy people. he findings could lead to more definitive diagnoses of the syndrome and may also point to an underlying mechanism in the disease process.

It’s not uncommon for CFS patients to face several mischaracterizations of their condition, or even suspicions of hypochondria, before receiving a diagnosis of CFS. The abnormalities identified in the study, to be published Oct. 29 in Radiology, may help to resolve those ambiguities, said lead author Michael Zeineh, MD, PhD, assistant professor of radiology.

“Using a trio of sophisticated imaging methodologies, we found that CFS patients’ brains diverge from those of healthy subjects in at least three distinct ways,” Zeineh said.

CFS affects between 1 million and 4 million individuals in the United States and millions more worldwide. Coming up with a more precise number of cases is tough because it’s difficult to actually diagnose the disease. While all CFS patients share a common symptom—crushing, unremitting fatigue that persists for six months or longer—the additional symptoms can vary from one patient to the next, and they often overlap with those of other conditions.

Scientific Challenge

“CFS is one of the greatest scientific and medical challenges of our time,” said the study’s senior author, Jose Montoya, MD, professor of infectious diseases and geographic medicine. “Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.”

The combination of symptoms can devastate a patient’s life for 10, 20 or even 30 years, said Montoya, who has been following 200 CFS patients for several years in an effort to identify the syndrome’s underlying mechanisms. He hopes to accelerate the development of more-effective treatments than now exist. (A new Stanford Medicine magazine story describes the study in more detail.)

“In addition to potentially providing the CFS-specific diagnostic biomarker we’ve been desperately seeking for decades, these findings hold the promise of identifying the area or areas of the brain where the disease has hijacked the central nervous system,” Montoya said.

“If you don’t understand the disease, you’re throwing darts blindfolded,” said Zeineh. “We asked ourselves whether brain imaging could turn up something concrete that differs between CFS patients’ and healthy people’s brains. And, interestingly, it did.”

The Stanford investigators compared brain images of 15 CFS patients chosen from the group Montoya has been following to those of 14 age- and sex-matched healthy volunteers with no history of fatigue or other conditions causing symptoms similar to those of CFS.

Three Key Findings

The analysis yielded three noteworthy results, the researchers said. First, an MRI showed that overall white-matter content of CFS patients’ brains, compared with that of healthy subjects’ brains, was reduced. The term “white matter” largely denotes the long, cablelike nerve tracts carrying signals among broadly dispersed concentrations of “gray matter.” The latter areas specialize in processing information, and the former in conveying the information from one part of the brain to another.

That finding wasn’t entirely unexpected, Zeineh said. CFS is thought to involve chronic inflammation, quite possibly as a protracted immunological response to an as-yet unspecified viral infection. Inflammation, meanwhile, is known to take a particular toll on white matter.

But a second finding was entirely unexpected. Using an advanced imaging technique—diffusion-tensor imaging, which is especially suited to assessing the integrity of white matter—Zeineh and his colleagues identified a consistent abnormality in a particular part of a nerve tract in the right hemisphere of CFS patients’ brains. This tract, which connects two parts of the brain called the frontal lobe and temporal lobe, is called the right arcuate fasciculus, and in CFS patients it assumed an abnormal appearance.

Furthermore, there was a fairly strong correlation between the degree of abnormality in a CFS patient’s right arcuate fasciculus and the severity of the patient’s condition, as assessed by performance on a standard psychometric test used to evaluate fatigue.

Right vs. Left

Although the right arcuate fasciculus’s function is still somewhat mysterious, its counterpart in the brain’s left hemisphere has been extensively explored. The left arcuate fasciculus connects two critical language areas of the left side of the brain termed Wernicke’s and Broca’s areas, which are gray-matter structures several centimeters apart. These two structures are important to understanding and generating speech, respectively. Right-handed people almost always have language organized in this fashion exclusively in the left side of the brain, but the precise side (left or right) and location of speech production and comprehension are not so clear-cut in left-handed people. (It’s sometimes said that every left-hander’s brain is a natural experiment.) So, pooling left- and right-handed people’s brain images can be misleading. And, sure enough, the finding of an abnormality in the right arcuate fasciculus, pronounced among right-handers, was murky until the two left-handed patients and four left-handed control subjects’ images were exempted from the analysis.

Bolstering these observations was the third finding: a thickening of the gray matter at the two areas of the brain connected by the right arcuate fasciculus in CFS patients, compared with controls. Its correspondence with the observed abnormality in the white matter joining them makes it unlikely that the two were chance findings, Zeineh said.

Although these results were quite robust, he said, they will need to be confirmed. “This study was a start,” he said. “It shows us where to look.” The Stanford scientists are in the planning stages of a substantially larger study.

More information: “Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome” Radiology, 2014.

FibroGuide Resource

neck pain

Thanks to Seeking Equilibrium, I discovered FibroGuide. FibroGuide has a modules with great information for those newly diagnosed and those of us who have had fibromyalgia for what feels like forever. You take a simple quiz and it points you to the modules you may find most helpful. Examples of modules are Understanding Fibromyalgia, Fibro Fog, Being Active, Communicating, Sleep, Pacing Yourself, and more. It’s got a lot of great information and I really like how it’s organized. With the quiz, you are quickly pointed to the resources you may find most helpful and don’t have to go digging through a ton of information for the tidbits that are the most relevant for you. I don’t know about you, but my attention span is short and my thoughts are easily scattered so I found the way this site is organized to be very helpful. Check it out!

FDA Survey on Chronic Pain and Fibromyalgia

The National Fibromyalgia & Chronic Pain Association and the FDA are teamed up to perform a survey targeting people who suffer from fibromyalgia and chornic pain. I took the survey this morning and it takes about 15 minutes. I urge everyone who suffers from chronic pain to take the survey. A lot of the questions deal with where we experience pain, the intensity of pain, triggers for our pain, and what non-pain symptoms of fibro/chronic pain trouble us the most (after the non-stop pain of course). There’s a comments space at the very end where I let loose on my anger at the FDA for making it harder for us to get the pain medications we need to manage our disease. I ranted about the assumption that everyone who takes these medications must be an addict and it’s not possible to take these medicines responsibly, as directed by a doctor (such BS!). I’m glad there wasn’t a character limit on that field because I had quite a bit to say since I had the opportunity to get on my soap box. I am hopeful that the FDA will seriously consider the responses they get on this survey and use them to redo the rules on the medications we need to cope with our pain. Are doctors should not be afraid to prescribe certain medications to us out of fear of the FDA.

Please take a few minutes and answer this survey. Maybe it will help us out in the long run. At the very least, I enjoyed ranting in the comments field. 🙂

Take the NFMCPA/FDA Survey

Article on Fibromyalgia Research

I stumbled upon this article about a doctor who has spent practically his whole career studying fibromyalgia and working with fibromyalgia sufferers. It has a good synopsis of how far research has come on fibromyalgia since the diagnosis first started appearing in the 1980s. I know I get frustrated sometimes at the lack of research being done into this invisible disease, but this article is a good reminder that things are being discovered and that our knowledge of this disease has come a long way, even if we still don’t understand so much about it. I won’t post the whole article here but I recommend reading it. Below are the bits I found most interesting.

Fibromyalgia researcher reveals secrets of a painful mystery

(I loved the metaphors he uses to describe how fibromyalgia works, how our brains interpret pain signals. These are probably the best metaphors for fibromyalgia I have heard.

Russell used a metaphor of two radios: One has a volume knob that works, but the other blares even the subtlest sounds as painful screeches. What feels like a touch to most people feels like a poke to people with fibromyalgia.

Researchers found that in the brains of people with fibromyalgia, pain centers lit up if a thumbnail was pressed with relatively minor pressure. The person felt real pain.

Cerebral spinal fluid samples extracted from fibromyalgia sufferers hinted at the processes, Russell said.

Fibromyalgia sufferers typically have three times the normal level of substance P, a pain amplifier, he said. Blocking substance P reduced pain in hands, he said, but not widespread pain. Substance P was one piece of the puzzle.

Fibromyalgia sufferers also have diminished levels of two important brain signaling chemicals, serotonin and norepinephrine. Prozac, a common antidepressant, works by increasing brain serotonin.

About 40 percent of fibromyalgia patients also experience mood disorders, suggesting a connection, Russell said, but Prozac didn’t ease their pain.

Fibromyalgia sufferers were later found to have high levels of glutamate, the main chemical involved in experiencing pain, Russell said.

Also elevated was a chemical called nerve growth factor, which stimulates repair in brain circuitry. That begs the question, Russell said, “Repair from what?”

Brain scans have shown that people with fibromyalgia lose gray matter — home to thought and memory — more quickly than others.

Sufferers of other types of chronic pain experience similar losses in gray matter, he said. The connection between pain and nerve death isn’t clear.

Earlier this year, researchers discovered a gene highly associated with fibromyalgia. It may predispose some people to develop the disease.

Relieve Chronic Pain By De-Stressing, Study Says

Relieve Chronic Pain By De-Stressing, Study Says

Destress Pain Management
Living with chronic pain can be truly stressful, but a new study contributes to growing research that managing stress may help reduce discomfort as well. Doctors from the University of Montreal found an association between the intensity of the pain experienced by chronic pain patients and their reported stress levels.

In the small study of just 24 participants, 16 of whom had chronic pain and 18 of whom were healthy control subjects, researchers found that patients who had a smaller hippocampus were more likely to also have higher cortisol levels. And higher levels of the stress hormone, in turn, contribute to increased reported pain scores on a scale of intensity.

“Our study shows that a small hippocampal volume is associated with higher cortisol levels, which lead to increased vulnerability to pain and could increase the risk of developing pain chronicity,” lead author Étienne Vachon-Presseau said in a statement.

Vachon-Presseau and colleagues measured cortisol levels in saliva samples supplied by all study participants. They then asked them to report pain levels, measured hippocampus size using fMRI and tracked response to pain stimuli using another fMRI.

The fMRI tests revealed that subjects with the smallest hippocampus sizes by volume were also more likely to have a greater response to pain in an area of the brain that’s linked to anticipatory anxiety. Subsequently, analysis showed that those patients were also more likely to have higher levels of cortisol.

Previous research has also shown an association between stress response and chronic pain sufferers. Now, many chronic pain specialists recommend a de-stressing practice like meditation to help ease pain response. The researchers hope their study will help support that treatment.
that treatment.

Posted: 03/03/2013 on Huffingtonpost.com