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.
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.
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!
Reblogged from Seeking Equilibrium
I’ve gone through a “roadkill tired” spell myself of late. I think I’m finally coming out of it. Adding a Vitamin B and iron supplements to my daily mix of supplements seems to be helping me feel a more normal level of tired, not the bad roadkill tired I’ve been doing. My brother actually figured out that it sounded like I was iron deficient. I definitely notice a difference now that I’m taking it. Thanks brother!
This post on chronic fatigue as it relates to fibromyalgia and other chronic illnesses is really great. She highlights ten common suggestions doctors make to help decrease fatigue and how most of them really work for fibro sufferers. Our brains just don’t work like “normal” brains and until doctors realize that and modify their recommendations accordingly, we’re stuck with getting the same unhelpful advice over and over. My favorite tip she makes is:
Point number 10: Be good to yourself. There is a lot of guilt and problems that go with chronic illness. We do need to be good to ourselves. This will be with us until there is a cure so we shouldn’t be too hard on ourselves.
I love these graphics. Sometimes the best way to understand a bunch of statistics and data is visually. I know I’m a visual learner. The only thing I don’t like about these graphics is that the statistic on how many women have fibromyalgia should be how many people. Men get fibromyalgia too. This is not just a “woman’s disease.”
Image and statistics courtesy of MBA Healthcare Management and Seeking Equilibrium.
I came across this poem by Joanetta Hendel today and had to share it. It’s a great description of what it’s like when you are feeling totally beaten down by pain and illness. I know I’ve been at the low point this poem describes many times. Hang in there everyone! It does get better.
I’ve been working through a lot the past year and a half, and perhaps most especially the last few months. I came across this this morning and it struck a chord so I wanted to share. I think of all the lessons I have learned, “You will relapse and that’s okay – as long as you keep fighting,” is the most important. I’ve been frustrated by the feeling that I recover from one physical ailment just to have another one come at me that I have to deal with. Life is a rollercoaster sometimes and sometimes all you can do is roll with the ups and downs as they come. I’ve also learned to get the most enjoyment out of the “ups” as I can. It’s important to enjoy those times while they last. They help you get through the “downs.”
“In the confrontation between the stream and the rock, the stream always wins not through strength, but through persistence.” –Peter Davies
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.
Definition
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.
Symptoms
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:
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/
My Fibromyalgia
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.
Reblogged from Seeking Equilibrium
R – is definitely for remember. Fibromyalgia is tough on your life. Most of us were Type A personalities that would thrive on the stress of our lives or careers. Once this lovely syndrome Velcros itself to us, we remember with longing our lives and for those of us who lost it….our careers.
R – which brings us to reinvent. If you lost your job or career, Fibromyalgia causes you to have to reinvent your life purpose. This is a tough one. I still struggle with this one but every time someone comments how I’ve helped them I know that I’ve found something that I wouldn’t trade for the world. It has given me a creative outlet and it’s given me purpose.
R – is for reluctance. Even though I’ve found an outlet, I’ve been reluctant to let my old life go. I still go through periods of longing and wish I could try sales again. Every time I think I can do it a doozy of a flare serves as a reality check. Ooh……another R.
R – Here we go. Reality check. Like I said…..just when I think I can disregard my body and run headlong into another idea, a flare comes along and slaps me and says….”not so fast…”
R – is for rebellious. Yes, I’m a rebel. Just look back at the other words. I try to live in a way that is kind to my body but every now and then I say…..eff it and push myself. I need to keep saying…”if you push you will pay.” I cannot forget this because it is true.
R – is for relax. I need to do this more often. It’s not in my nature to live on the comatose side of life but I push too much. If we just close our eyes….shut out the world…..it will help our pain. When life’s challenges come at us: just relax.
R – is for recognize. Listen to your body and recognize what it’s trying to tell you. I know that my flares usually start in my hands. I’ll start rubbing them and then, before I know it, the old familiar ache starts to spread throughout my body. It’s also very important to write symptoms and feelings down for your doctor. I hope you have one that listens to you.
R – is for reminders. When the fog hits and you don’t know why you walked into a room it’s helpful to have little reminders around. I make lists and lists in my phone. I have all my appointments in the calendar. What screws me up is that I forget to look at my phone.
R – is for those restless nights. Even though we have fatigue, we don’t get enough restorative sleep. Thank goodness for my iPad. I don’t know what I’d do without it. To try to get to sleep, I spray lavender on my pillow and I use melatonin tabs called Mid Nites. I know there’s medication to help sleep but I take muscle relaxers and pain medication. I’m afraid to take a sleeping pill on top of that.
R – is for responsible. Remember that all medications are powerful and we need to be responsible with them. That means responsible in taking them and responsible in where we keep them. If you have others in the house with you take care who has access to them.
R – is for relatives. My hope is that they recognize what is happening to you and don’t make you feel like your faking it or being lazy. Fibromyalgia is real. It’s tough enough to deal with the symptoms of this illness without friends or relatives making it worse. If you have people in your life that don’t believe you, get to a support group. Reach out….it will help you. None of us can go through this alone.
R – is for realization. Fibromyalgia isn’t going away and right now there is no cure. We need to learn management tools so that we don’t get overwhelmed. Fortunately, there is a research going on out there that may help point to a cause.
R – is for renewed. I may not get enough sleep but each day I wake up feeling a sense of renewal. I know that life could be a whole lot worse so I try to be grateful for each day. Gratitude and laughter go a long way.
R – is for rewarding. Thank you so much for reading my blog and commenting. All of you have truly given my life a direction that has so much meaning. It truly is one of the most rewarding things I’ve ever done.
and lastly…..
R – is for ridiculous.
Reduce it down to the ridiculous and find something to laugh about each and every day.
Find joy and happiness and love.
Sometimes the pain makes it very difficult but find it…in spite of the pain.
In loving memory of my dear aunt Lorena who we lost to cancer last night. She will always be one of my favorite people and I will miss her dearly. This was one of my grandfather’s – her brother’s – favorite poems.
“The Weaver”
My life is but a weaving
Between my Lord and me
I cannot choose the colors
He worketh steadily
Oft times he weaveth sorrow
And I in follish pride
Forget he sees the upper
And I the underside
But till the loom is silent
And the shuttle ceases to fly
Will he unroll the canvas
And explain the reason why
The dark threads are as needful
In the weavers skillful hand
As the threads of gold and silver
In the pattern he has planned.
Fighting Fibromyalgia 