Today is Fibromyalgia Awareness Day. I hope you are all wearing purple. In honor of Fibromyalgia Awareness Day, I thought I’d share some fun graphics. Please share them far and wide and help spread awareness of this disease. Help make fibromyalgia visible today.
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.”
I’m always on the lookout for new oils, creams, and ointments to use to give me relief from some of my fibromyalgia symptoms. One I had been using (Traumeel) just rebranded itself and changed its formula and I don’t like it as much now. Plus, it’s not available anymore on the website I order stuff like that through to make those types of products cheaper. Now I will be trying Two Old Goats products thanks to Seeking Equilibrium. It’s so stupid that they can’t brand their merchandise as treating fibromyalgia and arthritis anymore! Yet another reason for me to be mad at the FDA and get up on my soapbox. I love essential oils and lavender and eucalyptus are my go tos for aromatherapy. Lavender especially seems to work really well for me. I’m excited that these products have other natural anti-inflammatories in them like peppermint too. I can’t wait to try these out!
Read more … Two Old Goats Essential Oil Review via Seeking Equilibrium.
We all have bad days where keeping a positive outlook is impossible. Where we feel like we’ve been hit by a tractor trailer or run over by a train. We react to the weather and can predict it better than weatherpeople can. I like this blog post by Seeking Equilibrium about the average daily pain we all become accustomed to living with and the off-the-charts, please-make-it-stop pain that makes us crawl in bed and pray for sleep until the flare is over.
You know that feeling when you come home after a long, long day and fall into your oh so comfy bed and your whole body breathes a sigh of relief? Yeah, I miss that feeling. I get no such relief thanks to fibromyalgia. I wish I could experience that blissful feeling again when your whole body relaxes and melts into the bed and all the tension of the day just evaporates. I wish I could lay in my bed without experiencing pain. And not just the normal 24/7 pain of fibromyalgia, but pain caused by laying in bed. If I lay in bed too long, I get up bruised and beaten. I can’t win. Standing up and moving around hurts. Laying in bed hurts. What do you want from me, fibro monster?
I’ve had a long couple of days at work and I was exhausted when I got home today. I told myself I’ll just lay down for a bit and then I’ll get up, exercise and have some dinner. All I wanted was for my body to be able to relax and some of the tension from the last few days to leave my body. I just wanted to recharge my batteries a bit before tackling the daily (or almost every day) workout and yoga session I have to do to manage my fibro pain. I lay here willing my body to relax but the longer I lay, the worse the pain got. My legs and hips tightened up and my lower back went from tight to cramped to throbbing. My headache went from bad to worse. No matter what position I tried or how many times I got up to stretch out an aching part of my body, I couldn’t find a comfortable position that would allow my body to relax. So I finally gave up and got out of bed and started moving around. Moving around at least loosened up my painfully tight muscles a tiny bit.
Fibromyalgia changes everything in your life. It turns your life upside down. It takes away a lot of things and it makes you appreciate the little things. I used to take for granted that feeling of collapsing into bed and your whole body breathing a sigh of relief. Now, I wish I could experience it just one more time.