It Can’t Hurt to Ask

The Australian Parliament is asking for public submissions into chronic disease prevention and management in primary health care.  This is our opportunity to write to them and ask them to fund research into Fibromyalgia and cater for patients who require home care, visits and support from medical professionals.

Despite an estimated one million Australians living with Fibromyalgia, there is limited services, support and information available. The gaps between research and daily care are unacceptable.

Now is the time to ask the Federal Government to provide:

  1. Leadership and coordination of a national approach to provide integrated management of Fibromyalgia services, building on the work of state governments, private sector providers, Medicare Locals and Local Hospital Networks.
  2. Access to quality services for all Fibromyalgia sufferers including people in rural, regional and remote areas, indigenous and socio-economically disadvantaged communities, children, and older Australians.
  3. Access to education and training for health professionals in particular as it relates to early intervention, multidisciplinary team practice and the early identification of Fibromyalgia.
  4. A public awareness campaign to address discrimination, misunderstanding and stigmatisation of people with pain within the community, including in the workplace and in welfare and compensation systems.
  5. Funding to provide community support services including consumer information, self-management education and telephone support (crisis help line).
  6. The development of a national research agenda to address gaps in knowledge about Fibromyalgia and improve clinical practice in pain management.

The deadline for submissions is Friday, 31 July 2015.

Please make a submission if you can.

 

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Lifestyle Management With a Chronic Illness

by Harper Spero for HEALTH PERCH (with parenthesis by me!)

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During the first ten years of my life, my mom was on a mission to figure out why I had chronic ear infections, eczema, abscesses, and ongoing dental issues. Finally, when I was 11, I was diagnosed with Hyper-IgE, a chronic illness.

The National Institute of Health defines a chronic illness as a long-term health condition that does not have a cure. Some examples of chronic illnesses are epilepsy, heart disease, diabetes, asthma, cancer, HIV, Alzheimer’s disease and dementia, multiple sclerosis, Parkinson’s disease, cystic fibrosis, Crohn’s disease, and arthritis (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

While most of these chronic diseases are familiar, there are hundreds of lesser-known diseases, including Hyper-IgE (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

Hyper-IgE syndromes (HIES) are rare, primary immune deficiencies characterized by elevated serum IgE, dermatitis, and recurrent skin and lung infections. When I received the diagnosis, I had no idea what that meant or what to make of it. (Sound familiar?) I now had something to hang my hat on—but what exactly was it?

I was on medications here and there, dealt with many bumps along the way, and changed my diet numerous times, but never actually took complete control of my health. I chose to treat the symptoms as they arose instead of treating the illness as a whole. When I was 27, a cyst the size of a golf ball was discovered in my right lung. Shortly after having surgery to remove a quarter of my lung, I realized I needed to take complete control of my health. I didn’t want to be defined by my illness, but I also knew I couldn’t hide anymore. I knew I needed to evaluate my health and wellbeing and figure out what lifestyle changes I could make.

So I took a time out. I evaluated all facets of my life including environment, work, social life, diet, exercise, and even the way I processed information. This evaluation brought me to these 10 steps that can apply to managing most chronic illnesses. All of these points have helped to vastly improve my outlook and to move me in the right direction towards a healthier, well-balanced, satisfying life.

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  1. Find a team of experts

When you receive a diagnosis from a test result, a medical exam or a conversation with a doctor, it’s important to determine the best people to add to your health and wellness team. A key person should be one doctor that specializes in your specific chronic illness and with whom you feel comfortable, confident, and safe.

Another key component is finding specialists who may be able to support you with the different aspects of managing life with the chronic illness. This can be a team including (but not limited to) a nutritionist, acupuncturist, massage therapist, health coach, or physical therapist.

  1. Empower yourself

Your doctor can provide a ton of information that will allow you to educate yourself. This is the time to take ownership of this newfound challenge you’re facing. It’s not always easy, but you have control over the way you manage your life and can educate yourself with the resources available.

Be wary when reading articles about your chronic illness. It’s easy to assume one bad thing that happened to a single person could happen to you. Living your life in a constant state of fear won’t allow you to enjoy the life you were given.

  1. Create or join a supportive community

When facing a new diagnosis, it’s often a struggle to determine who to talk to and who to relate to. Find or create a like-minded group of people (as small or big as you’d like) that are experiencing similar circumstances. It may be beneficial to bounce ideas off of one another to avoid feeling alone. There are hundreds of Facebook pages for chronic illnesses, message boards, and online platforms for support. Additionally, there are meet-ups and other groups that get together regularly to discuss chronic illnesses. These add a personal, face-to-face element of support for those who are going through similar situations.

  1. Start a dialogue with your loved ones

Family and friends are there to support and love you unconditionally. It’s important to find the words to tell them what’s going on with you, but also to help them help you. Everyone reacts to these types of life situations differently—some take it much harder than others. Some people are quick to jump to conclusions and determine how they think you should manage your illness. One of the best resources for those with a chronic illness and for their family is a How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. While the book provides amazing tips for dealing with cancer specifically, it’s also relevant to all chronic illnesses.

Surround yourself with people who inspire, motivate, and support. You have the ability to choose who you want in the movie of your life—those who play a leading role, others who are extras, and the final group that doesn’t make the cut. Remove toxic relationships. They can serve as an added burden when managing life with a chronic illness.

  1. Don’t let your illness define you

64. More to meIt’s really easy to get consumed by doctor’s appointments and the overall maintenance of managing a chronic illness. It’s also extremely important that your illness does not define you or your life. You should always have the ability to allow fun, pleasure, and happiness into your world. In Danea Horn’s book Chronic Resilience, she states, “If you ‘own’ your illness, that probably means it has become your identity … you give a level of importance to the disease—one it does not deserve.” Remind yourself what is important to you and what you enjoy doing most. Be sure to implement those things into your daily routine.

  1. Be conscious of your diet

(Okay, this is where I really, REALLY suck!) Evaluate the foods that you eat. Do they benefit your health or do they drain you? Amie Valpone, founder of TheHealthyApple.com says, “Eating for wellness is a huge topic these days. Food sensitivities are increasing and people are understanding certain healthy foods (such as lemon, cilantro, etc.) are causing inflammation in their bodies along with the major toxic triggers such as gluten, dairy, soy, and sugar.” Valpone suggests sticking with one-ingredient organic foods such as raw nuts and seeds, beans, and organic animal products.

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  1. Keep fitness top of mind

95. yogaThis doesn’t mean you need to be at the gym every single day, but it does mean every bit of physical activity can help. Staying active helps the body function better and can quiet the mind. Fitness can include walking, running, spinning, rowing, yoga, weights, swimming, and more. Everyone has his or her preferred method of physical activity. Try out different gyms, studios, machines, classes, or teachers to determine what’s the right fit for you. Just because one person loves yoga doesn’t mean everyone else does. There are plenty of podcasts, apps, and online video platforms that provide exercises you can do in the comfort of your home or office.

  1. Give yourself a break

Managing life with a chronic illness can be exhausting. Keeping track of medications, doctor’s visits, and ongoing symptoms is nothing short of daunting. “We beat ourselves up for the way our body is letting us down,” Horn says. It’s important to cut yourself some slack and understand what you’re going through isn’t meant to be easy and there will be forks in the road. Sometimes your body isn’t going to function the way you’d ideally like it to and it’s imperative to be mindful and accepting of that. Your mind and body will benefit.

  1. Stay organized

With bills, prescriptions, doctor’s appointments, vitamins, and more to keep track of, staying organized is vital when managing your chronic illness. Find the best way to stay on top of your calendar. Google Calendar or an old-fashioned calendar/datebook can be helpful to keep track of when you start a medication, doctor’s visits, and symptoms.

  1. Give back

Sometimes it’s hard to imagine, but there are people in worse shape than you. Another person’s chronic illness may be getting the worst of them, they may be struggling financially, or they don’t have any online or offline support. These are likely the people who may not reach out for help but would appreciate any bit of support you can provide. Whether it’s virtual or in person, any way you can give back to those facing a chronic illness will not only be appreciated by the recipient but also extremely rewarding for you.

There is no question that living with a chronic illness can be challenging. Take ownership of the aspects of your life that you do have control of and you may reap the benefits of this empowerment.

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Marbles, Spoons & the Whole Megillah

Have you tried to explain chronic fatigue syndrome and/or fibromyalgia to some-one who just doesn’t get it? How about to your kids?

marblesExplaining why you can’t do the things other moms and dads do is a challenge but Melinda Malott’s book How Many Marbles Do You Have? Helping Children Understand the Limitations of Those With Chronic Fatigue Syndrome & Fibromyalgia provides a simple, easy to understand way to do that. How fabulous to finally be able to say to your child, “Here’s a book about what’s happening to me.” It’s a great way to explain ME/CFS or FM without overburdening your children with things they don’t need to know and probably won’t understand.

What is your story with ME/CFS?

MMMelinda: I became symptomatic in March 2006.  At the time, my son was 18 months old and my daughter was 3 ½.  My symptoms progressively got worse until May of 2009 I was reduced to the confines of my home almost exclusively for 2 years.  I have had some improvement.  My improvement coupled with a management strategy has really helped me.  I am still unable to work or do any physical exercise to speak of, but I lead a full life as a wife and mother of two.

Why did you choose to do a children’s book?

Melinda: I remember the day my children came into my bedroom and both started crying.  They thought I was dying. I was too sick to try to explain, and as the clouds dissipated I came up with the marble and jar analogy.  I had looked online for resources and there were NO books to be found for children.

How did you approach telling children about ME/CFS?  

Melinda: I have a bachelor’s degree in nursing and a Master’s degree in community health education, but my formal education did not prepare me to explain something as complex as CFS and fibromyalgia to young children.  I decided rather than try to explain something I couldn’t understand that it was best to try to help my children understand my limitations. Using a jar and some marbles I was able to say yes and no without having to say I was in pain, or I didn’t feel good or I was tired.  I could simply say I was out of marbles.  Don’t get me wrong, they know I have bad days. I just don’t feel the need to amplify that for them.  They see it first-hand.  The marbles and the jar lessen the notion of a momma who is suffering.

You can visit Melinda at her website.

This is the book we’ve been waiting for—a story for children of parents with Fibromyalgia or Chronic Fatigue Syndrome. In fact, I plan to buy a copy for all my loved ones, so they’ll better understand what my life is like. It all depends on how many marbles are in my jar each day—the perfect metaphor for explaining the unpredictability and the ups and downs of Fibromyalgia and CFS. At the end of the book, Malott writes “… a heart full of love beats a jar full of marbles any day.” Not only is this book informative and insightful, it’s a heart full of love in itself.

Toni Bernhard, the author of How to Be Sick

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Chronically Quiet

70. never aloneMany of us are lonely and alone…and it’s sad.

But let’s look at some of the great revelations and benefits found in silence and solitude that other people (smartphone users check their device every 6.5 minutes, which works out to mean around 150 times a day) miss out on. Silence has been replaced with a cacophony of communication, and solitude with social media.

Here are ten (as described by Thai Nguyen):

1.       Bypassing Burnout:

Too often our culture parallels self-worth with productivity levels. Whether it’s asking what our country can do for us, or what we can do for our country, the question remains—what is left to be done? It’s a one-way ticket to burnout.

Solitude allows for a break from the tyrant of productivity. What’s more is that doing nothing helps with doing much rather than being in opposition. Promega is a company with on-the-job “third spaces” where employees are able to take solitude breaks and meditate in natural light. This has resulted in numerous health benefits as well as improved productivity levels for the company.

2.       Heightened Sensitivity (ok, maybe we don’t want this one):

For many, attempting ten days of silence would be akin to walking on water. Vipassana silent retreats are exactly that; participants are instructed to refrain from reading, writing, or eye contact.

One hundred scientists went on a retreat for research and noted that shutting off the faculty of speech heightens awareness in other areas. Beginning with breathing, that focus and sensitivity is then transferred to sights, sounds, sensations, thoughts, intentions and emotions.

3.       Dissolving Tomorrow’s Troubles:

Alan Watts argues that our frustration and anxiety is rooted in feeling and being disconnected—living in the future or the past is nothing but an illusion.

Silence brings our awareness back to the present. This is where concrete happiness is experienced. Watts makes the distinction between our basic and ingenious consciousness; the latter makes predictions based on our memories, which seem so real to the mind that we’re caught in a hypothetical abstraction. It plans out our lives with an abstract happiness, but an abstract happiness can also be a very real disappointment.

The future falls short of what the present can deliver. Silence and solitude can help immerses us back in the present moment.

2014 1. nature4.      Improves Memory (fibro what?):

Combining solitude with a walk in nature causes brain growth in the hippocampus region, resulting in better memory.

Evolutionists explain that being in nature sparks our spatial memory as it did when our ancestors went hunting—remembering where the food and predators were was essential for survival. Taking a walk alone gives the brain uninterrupted focus and helps with memory consolidation.

5.       Strengthens Intention and Action:

Psychologist Kelly McGonigal says during silence, the mind is best able to cultivate a form of mindful intention that later motivates us to take action.

Intentional silence puts us in a state of mental reflection and disengages our intellectual mind. At that point McGonigal says to ask yourself three questions:

“If anything were possible, what would I welcome or create in my life?”

“When I’m feeling most courageous and inspired, what do I want to offer the world?”

“When I’m honest about how I suffer, what do I want to make peace with?”

Removing our critical minds allows the imagination and positive emotions to build a subconscious intention and add fuel to our goals.

McGonigal explains, “When you approach the practice of figuring this stuff out in that way, you start to get images and memories and ideas that are different than if you tried to answer those questions intellectually.”

6.       Increases Self-Awareness:

In silence, we make room for the self-awareness that allows us to be in control of our actions, rather than under their control. The break from external voices puts us in tune to our inner voices—and it’s those inner voices that drive our actions. Awareness leads to control.

We must practice becoming an observer of our thoughts. The human will is strengthened whenever we choose not to respond to every actionable thought.

7.       Grow Your Brain (oh, another one that really couldn’t hurt any of us!):

The brain is the most complex and powerful organ, and like muscles, benefits from rest. UCLA research showed that regular times set aside to disengage, sit in silence, and mentally rest, improves the “folding” of the cortex and boosts our ability to process information.

Carving out as little as 10 minutes to sit in our car and visualize peaceful scenery (rainforest, snow-falling, beach) will thicken grey matter in our brains.

8.       “A-Ha” Moments:

The creative process includes a crucial stage called incubation, where all the ideas we’ve been exposed to get to meet, mingle, marinate – then produce an “A-ha” moment. The secret to incubation? Nothing. Literally. Disengage from the work at hand, and take a rest. It’s also the elixir for mental blocks. What’s typically seen as useless daydreaming is now being seen as an essential experience.

9.       Mastering Discomfort:

Just when we’ve found a quiet place to sit alone and reflect, an itch will beckon to be scratched. But many meditation teachers will encourage us to refrain and breathe into the experience until it passes (Remember Eat, Pray, Love?).

Along with bringing our minds back from distracting thoughts and to our breathing, these practices work to build greater self-discipline.

10.     Emotional Cleansing

Our fight/flight mechanism causes us to flee not only from physical difficulties, but also emotional difficulties. Ignoring and burying negative emotions, however, only causes them to manifest in the form of stress, anxiety, anger and insomnia.

Strategies to release emotional turbulence include sitting in silence and thinking in detail about what triggered the negative emotion. The key is to do so as an observer—stepping outside of ourselves as if we’re reporting for a newspaper. It’s a visualization technique used by psychotherapists to detach a person from their emotions, which allows them to process an experience objectively and rationally.

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#SICK Looks Like Me

Lottie 1I was pointed to this blog post from a Facebook group I belong to: it’s by Lottie Ryan of Who’s That Lady For Women With Chronic Illness.

I wonder how many people will try to do this? Or how many will give up (before beginning) and say ‘too hard’? I wonder if it will make me feel better? Or if feeling better will make me want to try it out?

Have a read and let me know what you think…

One thing that Lottie is definitely correct about is that #sicklookslikeme.

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The Revolution

I incite a revolution at the end of this post but you’re going to have to read it to understand the point, so grab a cuppa and dive in…

HAVE YOU STOPPED MAKING AN EFFORT WITH YOUR APPEARANCE?

IS MAKEUP FESTERING IN A DRAWER SOMEWHERE HAVING NOT SEEN THE LIGHT OF DAY FOR YEARS?

HAS ‘MAKING AN EFFORT’ BECOME SOMETHING OTHER WOMEN DO, WOMEN WHO AREN’T LIVING WITH CHRONIC ILLNESS?

If so, then you’re going to get something valuable from this post, but if makeup, nice clothes, looking good and all that jazz aren’t your thing, and are never likely to be your thing, then you might just want to skip to the action in the last paragraphs.

At some point during my late twenties, early thirties, I stopped wearing makeup.

This happened at exactly the same time as I stopped being the real me and stopped valuing myself as worthy.

I’d stopped wearing makeup and fallen into the “I haven’t got the time or energy for that” thing or “No one needs makeup, I’m happy au natural”, which was really code for “I’ve stopped caring about myself, because I’ve forgotten my true value, and I don’t think I’m worth the time or energy”.

I also thought I had to look sick to be sick.

On top of the usual mommy guilt from which we all suffer, I had the added guilt of having birthed my children into a seriously ill situation knowing I couldn’t care for them as I wanted, and as they needed. I turned to my amazing husband (who never fails me, or them) and our parents to help, but with that felt a compelling need to ‘prove’ I really was as sick as I felt.

In addition I noted that doctors take a lot of interest in your appearance and on the odd occasion I’d turned up to clinic looking better presented their exclaims of ‘Oh, you look much better, I’m so glad to see things are improving’, despite my protestations that they weren’t, made things harder, giving me more reason to look sick to prove I was sick.

Then one day I realized I was deeply, heart achingly miserable and I’d started avoiding mirrors or any reflective surface as the sight that greeted me was just too depressing.

I’d become something I just wasn’t inside and if my chronic illness was indeed chronic and therefore for life I just couldn’t continue the rest of my life as the miserable, depressed, pale and wretched thing I’d become.

My marriage and relationships couldn’t survive me being this wretched person either. It was too depressing and awful. Oh, don’t get me wrong, my husband loves me with or without makeup, but there’s no doubt he finds me much more attractive when I’ve made an effort with myself, and why shouldn’t he? I certainly always wore makeup during the time we dated and was not pale and wretched-looking, so that’s not who he fell in love with. Nor did I walk down the aisle without makeup on, so that’s not who he married either.

I Can Change

I recognized that I couldn’t quickly, if ever, change what was going on inside of me but I could change how I presented myself on the outside and thus how I felt about myself.

Though weak, in pain, and truly exhausted there was definitely still a sparkly heart thumping in my chest, intrigued by all things bright, excited by small adventures and so very open to living a beautiful life despite it all. I needed others to see this person and recognize me for who I was despite my illness, and in turn that recognition might just bring me back to life.

The only person who could change this situation was me. I decided to stop worrying about others’ judgements and assumptions and go out shining as I truly am inside; to be authentic and acknowledge that how I look has no true bearing on how I feel.  Doctors and others soon got used to seeing me looking amazing but showing up in all of their tests as the sick person I undoubtedly am.

I went on a mission to redefine what sick Lottie looks like.

To start this, I started wearing makeup.

It was that simple.

There’s a lot of cynicism around make-up and modern beauty standards, but I’m of the opinion that we have this amazing tool at our disposal, to help us feel better about ourselves, so why not use it?

Women fought to wear makeup (seriously…read on)

It’s a fact that women fought hard for the right to buy and wear makeup without shame. It’s a right we sought alongside our right to vote.

Prior to around 1910 makeup was an ‘under the counter’ business, deemed fit only for ‘Ladies of the Night’. In the 1920s women demanded the right to dress and make themselves up as they see fit; relinquishing their corsets, showing their legs and wearing bold makeup with red lips and smokey eyes.

Makeup became widely sold over the counter and worn by the average woman. It has been a tool women have used to express their femininity and create the best version of themselves ever since. It’s an important part of our history and modern being, and I’m a big fan.

Wearing makeup again was just the beginning of my long journey, so if you recognize yourself as similar to the way I was at the top of this story, take hope in the fact that YOU CAN change back, or into the person you really are, with small simple steps that won’t overwhelm you.

Hopefully you’ve read my ‘5 Simple Steps to Better Mornings’ and started doing them. I know they seem ridiculous in their simplicity, but this is where I started and if my personal journey is anything to go by these simple things might just lead you to various adventures of a lifetime.

From Pilled Up to Pinup

If someone had told me 6 years ago when I started this journey that wearing mascara would be the start of my journey towards becoming a published vintage pinup model I would have laughed in their face and told them they were being ridiculous. I, a woman in her early thirties, mom of two toddlers, with BOWEL disease, fluctuating weight due to steroids, and a future filled with abdominal surgeries could not possibly be a vintage pinup.

Yet here I am:

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Let’s Start A Revolution

Start small. Start today and then start dreaming about what you really want in your life, as these small steps WILL lead you somewhere great if you take action.

You can read my stories, my suggestions and my ideas all day, every day, but nothing is going to change unless YOU TAKE ACTION.

So, I want your help to start a revolution.

I want to change the way sick is viewed by people. In the 21st century people can live with a chronic illness and look fine. I could be in hospital almost dying and still look pretty good with my makeup on and my hair done (in fact I have been, much to my nurses’ amusement). Judgements based on looks are outdated, unhelpful and need to change, and I need your help to change them!

Go and ‘put your face on’, that beautiful face that mirrors your heart not your illness, and head out to shine despite it all, but first take a selfie – yep, I’m for real.

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We’re going to document this, and start a revolution at the same time. There’s power in a hashtag don’t you know?

When you’ve taken your selfie post it on Twitter/Instagram/Facebook with the hashtag #sicklookslikeme, then post it here in the comments too or, if you’re shy, come into our Facebook group and post it there, until you build your confidence to perhaps post elsewhere.

Are you in? I hope so as I can’t bring about this change on my own. This is all about team work and I want YOU on my team.

You’re never alone.

Lottie -x-

PS This is not a one-off, thing. I’m going to use this hashtag and work on this revolution for the foreseeable future. There’s work to be done! #sicklookslikeme

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You Could Have Asked Me…

New findings published in Arthritis & Rheumatology, a journal of the American College of Rheumatology (ACR), suggest that brain abnormalities in response to non-painful sensory stimulation may cause the hypersensitivity (increased unpleasantness) that patients experience in response to (‘normally’ non-painful) daily visual, auditory and tactile stimulation.

According to the study, patients reported increased unpleasantness in response to multi-sensory stimulation in daily life activities. Furthermore, the fMRI images displayed reduced activation of both the primary and secondary visual and auditory areas of the brain, and increased activation to visual, auditory and tactile stimulation that patients reported to experience in daily life.

191. broken wing

Lead study author, Dr Marina López-Solà from the Institute of Cognitive Science, University of Colorado Boulder said, “Our study provides new evidence that fibromyalgia patients display altered central processing in response to multi-sensory stimulation, which are linked to core fibromyalgia symptoms and may be part of the disease pathology. The finding of reduced cortical activation in the visual and auditory brain areas that were associated with patient pain complaints may offer novel targets for neuro-stimulation treatments in fibromyalgia patients.”

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At Least, it isn’t Cancer.

The following post appeared at reachwhite.com; however (and it’s a BIG however) I have taken some liberties. It was originally about Lyme disease but I empathised completely with the author, from my fibromyalgia-racked perspective. So I am sure that some of you feel the same way (not all of you, I know that!). Basically, this is a re-blog but I have replaced Lyme Disease with Fibromyalgia and ME/CFS.

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Here goes:

I probably won’t make a lot of friends with this post — but I hope I don’t make any enemies either. I hope that what I’m not saying is as clear as what I am saying.

I’m not saying that Fibromyalgia and/or ME/CFS is worse than Cancer. I’m not trying to make any comparison between the two diseases…as diseases. Both Cancer and Fibromyalgia and/or ME/CFS are devastating. Both wreck families. Both make patients unable: unable to stay awake, unable to sleep, unable to work. Both impact on functional status and well-being and reduce quality of life.

But there are some notable differences — and those differences are all in how other people respond to the illness. How other people perceive the sick person, and the sick person’s family.

If you have Cancer, or another sickness from the established disease Canon: the register of approved diseases (Diabetes or AIDS or Parkinson’s or Multiple Sclerosis or Cancer), people will listen.

If you have Cancer, your health insurance will probably cover your treatment, at least partially…whatever you want that treatment to be.

If you have Fibromyalgia and/or ME/CFS, you will get letters from your health insurance company saying that they can’t cover any of your treatment because their guidelines don’t recognize chronic Fibromyalgia and/or ME/CFS.

If you have Cancer, people will establish foundations, and run 5k’s, and pass acts in Congress and wear ribbons and buy bracelets and pink things to raise funds for research — to the tune of billions a year.

If you have Fibromyalgia and/or ME/CFS, no one will raise funds for research, or even believe that you have a disease. But you’ll look around one Saturday and realize your 5-year-old daughter is missing…and you’ll find her down the street, peddling her artwork and her trinkets door-to-door: to raise money for the family.

If you have Fibromyalgia and/or ME/CFS, you will go broke…while you’re going for broke.

If you have Cancer, and you’re a kid, the Make-A-Wish Foundation will arrange for you to meet your favorite celebrity or go to Disney World.  And Hollywood will make movie, after movie, after movie about your story.

If you have Fibromyalgia and/or ME/CFS, and you’re a kid, your gym teacher will tell you that you have to run the mile unless you can get a note from your doctor. Your teachers will fail you for missing too many days of school. And people will tell your parents that you’re just going through a phase.

If your dad or your mom has Cancer, people will organize workshops and therapy groups for you. People will tell you that it’s OK to express your feelings.

If your dad has Fibromyalgia and/or ME/CFS, people will tell you that he doesn’t love you. Let me repeat that and assure you that I do not exaggerate. If you’re a kid, and your dad has Fibromyalgia and/or ME/CFS, well-meaning people will tell you that, if your daddy loved you more, he would try to get better.

If your husband has Cancer, ladies from your church will show up at your door with casseroles.

If your husband has Fibromyalgia and/or ME/CFS, ladies from your church, even people in your own family, will tell you to leave him; or call you an enabler. But you’ll be too busy helping him crawl from his bed to the couch, or steadying him as he stands so that he can use the bathroom, or helping him finish his work so that your kids can eat to wonder what, exactly, you’re enabling him to do.

If people ask you: “Is your dad sick?” And you say: “He has Cancer.” Their eyes will well up. They’ll squeeze your hand and offer to bring you dinner, put you on their prayer list. They’ll say: “If there’s anything we can do…” And they’ll mean it.

If people ask you: “Is your dad sick?” And you say: “He has chronic Fibromyalgia and/or ME/CFS.” They will look confused for a moment. They’ll say: “What?” And then they’ll shake their heads, smile, and say:

“Well…at least it isn’t Cancer.”

Related articles:

Fibromyalgia Awareness – What YOU Can Do and Why

I’m really sick of sitting on the couch, too tired to do anything every day; and then, at 5.16 am (now), being unable to sleep. I need some help. I need somebody to come up with a better way to manage this condition. Better yet, I need someone to cure this condition. Really? You, too?

In fact, I am incensed enough to get back on my high horse and start another Fibromyalgia Awareness Campaign.

What you can do?

fibro 1

Weren’t you complaining about unexplained pain last week? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Haven't you been feeling like this recently? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Haven’t you been feeling like this recently? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

I've been worried about how you're feeling. Please check out http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

I’ve been worried about how you’re feeling. Please check out http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

I know you've been having trouble sleeping. Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

I know you’ve been having trouble sleeping. Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Got someone you're worried about? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Got someone you’re worried about? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Hey! This would explain why you have been feeling so tired all the time - Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Hey! This would explain why you’ve been feeling so tired all the time – Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Why we need to increase Fibromyalgia awareness

  1. (Most importantly) Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
  2. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about FM, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
  3. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
  4. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
  5. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
  6. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
  7. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
  8. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers will understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
  9. More support groups will be formed as a result of more people realising that they have fibromyalgia.
  10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.

Sounds good, doesn’t it?
Please, let’s give it a try.

Fibromyalgia Blood Test Accurate

blood bank

New research results have upheld the validity of a blood test that can diagnose fibromyalgia, according to the chief executive of a Santa Monica-based company that began offering the test earlier this year.

“We’ve proven that fibromyalgia can be diagnosed unequivocally through this test, a test that remains highly sensitive and specific,” said Bruce Gillis, MD, founder and CEO of EpicGenetics.

blood-cellsThe FM test looks for protein molecules in the blood called chemokines and cytokines, which are produced by white blood cells. Fibromyalgia patients have fewer chemokines and cytokines in their blood, according to Gillis, and have weaker immune systems than healthy patients.

But critics said the blood test was unreliable because the same immune system biomarkers can be found in people with other illnesses, such as rheumatoid arthritis.

The new research, which was conducted by EpicGenetics, involved nearly 500 people. The blood test was given to 160 fibromyalgia patients, 100 lupus patients, 98 patients with rheumatoid arthritis and 119 healthy people who served as a control group.

Over 93% of the patients who had fibromyalgia were correctly identified by the blood test, according to Gillis, and over 89% of those who did not have fibromyalgia were correctly identified.

108. mutation“What we found is that the biomarkers do not occur in other rheumatologic diseases, it’s only in fibromyalgia,” Gillis told National Pain Report. “I cannot tell you if these biomarkers are the cause of fibromyalgia or if it’s a by-product from fibromyalgia. We don’t know that yet. But these findings are the first objective methods to prove a patient has fibromyalgia.”

“The test does two things. It doesn’t merely give you the diagnosis of fibromyalgia, it legitimizes the diagnosis of fibromyalgia,” says Gillis. “It proves it’s a real disease. It’s not a bogus affliction of neurotic, crazy, hypochondriacally people. They really are sick. There’s something wrong in their immune system processing.”

Much of the new research was conducted Daniel Wallace, MD, a rheumatologist at the Cedars-Sinai Medical Center in Los Angeles and a professor of rheumatology at UCLA. Wallace, who has written a number of books on fibromyalgia and other autoimmune diseases, is on EpicGentics scientific advisory board.  He could not be reached for comment on this story.

Dr Gillis says the research results were well received when he presented them last month at the annual meeting of the American College of Rheumatology in San Diego.

“It now I think eliminates the last criticisms by any naysayers regarding the test. It says that we listened to their criticism and we approached it in a direct fashion to answer the question,” Gillis said.

But some critics remain.

“I wish Dr Gillis well in his quest to establish even a shred of scientific credibility for his test, which has been vitiated by what Sir William Osler referred to as ‘the corroding influence of mammon,’”  wrote John Quintner, MD, a prominent rheumatologist in Australia, in an email to National Pain Report.

Quintner has been skeptical of previous research conducted by EpicGentics. So has Fred Wolfe, MD, a rheumatologist who has called the fibromyalgia blood test “junk science.”

Critics are waiting for the new research to be published in a peer-reviewed medical journal. Gillis says a report on the new study is still being written and he hopes to get it published in the next few months in a “highly regarded, well-respected, peer-reviewed journal.”

The FM test kit costs $744 and is not covered by most insurance companies. Blood samples are shipped to an EpicGenetics laboratory for testing and results are usually available in about a week.

From NationalPainReport.com

 

New studies Find Causes of Fibromyalgia

Oh…LOOK! Two new studies on FM have ‘solved’ the on-going mystery that is FM. How many causes of this mystery is that, now?

thyroidThese studies focus the problem on the thyroid, pituitary and hypothalamus, and suggest new avenues of relief for sufferers.

Research from the FM Research Foundation reveals deficient thyroid hormone regulation (DTHR) as an underlying cause of FM. Poor diet, poor physical fitness and metabolism slowing drugs are primary contributors to symptoms as do additional hormonal imbalances of cortisol, estrogen and progesterone.

Another study, by Dr John Lowe, Diplomat of the American Academy of Pain Management and Director of Research at the FM Research Foundation in the UK claims “indisputable proof” that the primary cause of FM are with the pituitary gland or the hypothalamus.

The most often reported symptoms of FM so closely match with hypothyroidism that many physicians order a standard thyroid test in response to complaints from FM sufferers. When that test comes back negative, physicians dismiss a thyroid or hormonal disease.

Many of those tested show ‘thyroid anti-bodies’ with a normal TSH. The presence of anti-bodies indicates the thyroid is in the process auto-immune failure. However, because the TSH levels are normal, doctors do not prescribe medications.

Endocrinologists support treating the thyroid even if the TSH test is within normal range. The patient may present with symptoms of hypo-thyroidism, hyper-thyroidism or a flux of the two and often told they have FM.

The UK studies claim this description is, in fact, FM.

Many doctors do not understand this is a bell curve measurement and ‘normal’ may not mean ‘individual,’ and two different laboratories may indicate two separate results.

65. snowflakes

The words of Dr Elizabeth Vliet who runs a women’s health clinic art All Saints Hospital in Fort Worth TX and is the author of Screaming to be heard: Hormonal connections women Suspect and Doctors Ignore, seems to support the UK findings.

“The problem I have found is that too often women are told their thyroid is normal without having the complete thyroid test done. Of course, what most people and many physicians don’t realize is that a ‘normal range’ on a laboratory report is just that: a range.

A given person may require higher or lower levels to feel well and to function optimally. I think we must look at the lab test results along with the clinical picture described by the patient.

I have a series of more than 100 patients, all but two are women, who had a normal TSH and turned out to have significantly elevated thyroid anti-bodies that meant they needed thyroid medication in order to feel normal.

This type of oversight is particularly common with a disease call thyroiditis which is 25 times more common in females than males. A woman may experience symptoms of the disease for months to years before the TSH goes up.”

This fits with the UK research which states the condition may not rest with the thyroid but with the pituitary gland or the hypothalamus.

The UK research claims plausible evidence of at least 40 abnormalities of FM patients as a result of testing within range and show such symptoms as:

Widespread pain, tenderness, chronic fatigue, stiffness, depression, fuzzy brained, anxious, intolerance to cold , hot flashes (dependant) bowel issues, sleep disturbances, numbness and tingling, dry skin and mucus membranes, headaches and exercise intolerance-all hallmarks of FM.

Too little thyroid regulation also affects the metabolic aspects of FM and the UK studies concluded resting metabolic rates of those with undetected thyroid issues measured 29 percent lower than average.

Basal body temperature was 96.38. This lower core temperature combined with a poor resting metabolic rate can make an FM victim run the gamut in symptoms.

The new research provides hope for a cure for FM sufferers. The FM Research Foundation ran clinical trials with FM patients using thyroid hormone therapy without using the T4 hormone and found those in the controls groups that had FM improved substantially when re-tested one to five years after initial treatment.

The researchers claim “granite hard findings” for the cause of FM and the relief via treatment.

80. diet weekFM sufferers may benefit from consultations with a neuro – endocrinologist for diagnosis and treatment. An all-natural, reduced calorie diet along with moderate exercise is mandatory to diminish or eliminate symptoms. Analgesics and sleep medication may also help reduce the symptoms of FM (so they say this time!)