Many of you may know that actor Morgan Freeman suffers from fibromyalgia, although from his words his pain seems to be more localized to the left side of his body injured in a bad car accident and hasn’t gone full body yet. That doesn’t mean his symptoms don’t cause havoc full body. It’s just my guess. Anyway, I stumbled upon this article where Freeman discusses his fibromyalgia pain and says that marijuana is the only thing that provides him with pain relief. He says it’s benefits are enough that it should be legalized nationwide. It’s an interesting article and a quick read so I thought I’d share it.
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.
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)
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.”
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.
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.
“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.
Today is Fibromyalgia Awareness Day! In honor of this, I thought I’d repost one of my first posts discussing what fibromyalgia is. Wear your purple today and show everyone you are a fibromyalgia warrior! #FibromyalgiaAwarenessDay
What is Fibromyalgia?
For those of you who (unfortunately) aren’t already intimately aware of what fibromyalgia is, I thought I’d give a brief introduction to it. Fibromyalgia is also know as Fibromyalgia Syndrome (FMS) and chronic pain disorder. It actually has some links to PTSD, as far as the way the brain works — or rather the way it works but isn’t supposed to be working. Here is the definition of fibromyalgia from the Mayo Clinic’s website. I find that WebMD has some outdated information on fibromyalgia and prefer to reference sites like Mayo’s.
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.
While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help.
The pain associated with fibromyalgia often is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:
- Back of the head
- Between shoulder blades
- Top of shoulders
- Front sides of neck
- Upper chest
- Outer elbows
- Upper hips
- Sides of hips
- Inner knees
Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is frequently disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea, that further worsen symptoms.
If you want to read more about fibromyalgia, here is the link to information it through the Mayo Clinic: http://www.mayoclinic.com/health/fibromyalgia/DS00079/
For me, fibromyalgia at it’s best is the “dull ache” described in the information above. I hurt everywhere, all the time. I have trouble relating to people how much pain I’m in. If you’ve never been in chronic pain, then you really have no clue what I’m going through. The closest analogy I can come up with — and it’s a poor one — is having a migraine headache only the headache is your entire body. It hurts to move, it sometimes hurts to breath, sometimes it even hurts to be awake. I have every single “tender point” in the so-called diagnostic test where your doctor pokes you all over and if you yelp in pain to enough of his pokes, then you have fibromyalgia. My rheumatologist did that to me once and it spiked my pain so badly, he hasn’t done it again. He likes to do it at every check up to see how much his patients improve, but for me he doesn’t bother. I can tell him if I’m improving or not and don’t need him spiking my pain by poking me.
I often use the scale of 1 to 10 (1 being no pain and 10 being the most pain you can imagine) to try to tell people, especially my husband and immediate family, how much pain I’m in on any given day. An average to good day is a 5 or a 6 on that scale for me. I always feel the worst right when I wake and as the evening progresses. 10am to 2pm is the best part of the day for me, and unfortunately I spend those hours at work. After 4 solid years of non-stop, chronic pain, you get used to a certain amount of pain. On the good days where I drop below a 5, it’s actually kind of startling to suddenly realize “Hey, I’m feeling pretty good right now. My pain isn’t terrible.” At those times, your inclination is to rush out and do something fun, or something you don’t normally have the energy to do, like go shopping. That’s an urge you have to fight because if you overdo it any given day, you’ll pay for it the next day. Living with fibro is all about balance. Balance in everything. You have to balance the amount of time you sit in one place (like at your desk) with the amount of time you stretch, walk around, and exercise. You have to get a full 8 to 9 hours of sleep each night to balance out the toll the pain takes on you every day. You have to balance out your depression with good emotions to try to stay in the “up beat” state of mind doctors have found leads to the least amount of pain on a daily basis for people with fibro. You have to eat a balanced diet. You have to balance the time you spend working with time you spend on yourself, meeting your needs and your pain’s needs. You have to balance the time you spend with your husband and family with the time you want to spend in bed, exhausted, just giving in to the pain for awhile.
This blog is about my search for balance in life. My path to making the best of my life in pain. My search for the best path out of the mess fibro has made of my life. I’m always trying to make myself feel better, be better. I’m trying to learn to control my pain and improve my quality of life, and thereby improve the quality of life of my husband and those around me who are affected by my fibro. I hope that writing about my experiences and my journey will help me but will also help anyone out there reading this as well.
South Africa and the world lost a great man yesterday. As President Obama said, he doesn’t below to us anymore, he belongs to the ages. I grew up hearing of his struggle in the news. I read about him in textbooks. I studied him in my Political Science classes in college. I’ve followed his life and career for much of my adult life. In college, I especially enjoyed learning about him. We spent so much time in college studying the Founding Fathers and other US political giants, it was nice to read about someone who was alive in the present world political climate. Not only alive, but a pillar of humanity who had made so many amazing changes in his country and kept struggling every day to better the lives of his people. He was a modern-day hero, as NBC News termed it last night. I loved that he practiced what he preached. And his words always rang with such honest conviction. When he spoke, the world stopped to listen.
As a student of political science, I admired everything that Nelson Mandela accomplished, first as a protestor and revolutionary and then as president of his country. He was instrumental in ending apartheid. Now, as a woman who suffers from fibromyalgia, I admire his strength, courage, and his ability to never, ever give up. I suffer from chronic pain every single day. I battle my own body every single day. The pain knocks me down all the time and I have dig deep every time to get back up and continue my fight. But this man suffered so much more and yet he never, ever gave up. He kept fighting the good fight, even when we was locked up in prison for 27 years. He served as a worldwide inspiration even from a prison cell, and perhaps especially because of this. His accomplishments and inspirational words will be remembered for generations to come. He will be missed.
I really enjoyed watching President Obama speak yesterday during the celebrations marking the 50th anniversary of the March on Washington and Martin Luther King, Jr.’s famous “I have a Dream” speech. I enjoyed it in part because the first African American President stood there, where MLK once stood, to mark the anniversary of such an important moment in the civil rights movement. That alone is a powerful representation of just how far we’ve come. I enjoyed President Obama’s speech because it was a celebration of everyone who is a fighter — whether it be someone who fights for civil liberties or someone — like me — who fights every day against the tide of pain in my own body. His speech celebrated the fighter in all of us, but resonated especially with the fibro fighter in me. There were two parts of his speech that I liked the most and I have not seen them anywhere in the media as pundits favorite excerpts from the President’s speech. They do not speak to policy issues, the civil rights movement, current affairs, or anything else likely to catch the attention of the 24-hour news networks eye these days. They speak to something in the human spirit that lets us keep going even in the face of never ending chronic pain, as we sufferers chronic illnesses face. That part of our selves that said “I will not quit” or “I won’t let this beat me.” That let’s us never give up. That lets us keep putting on foot in front of the other and marching forward no matter what we face or how much pain each step causes us. I hope you enjoy these two quotes as much I as do.
His speech celebrated the fighter in all of us, but resonated especially with the fibro fighter in me.