First (this) then WOW!

This post may seem to be counter-intuitive to this very site BUT I think you might really, really like it.

Firstly, I was reading Melissa Swanson’s blog post about a new way to do a medical research:

MedNexus ~ A new way to do a medical research!

**This is a sponsored post**

MedNexus  

I was asked to try a new site for patients called MedNexus to research medical information.

I was excited to hear that there was a site for those of us looking for reliable medical information.  I remember when I was first diagnosed with fibromyalgia that I was a mad woman searching the internet for anything and everything about fibro and the “evil sidekicks” that it likes to bring along. I had no problem finding articles. The problem was that there was so much contradiction about diagnosis, treatment, management and more.

Currently there are approx. 10 million people in the United States living with fibromyalgia. They do not have the luxoury of being friends with some of the experts in the area of chronic pain and fibromyalgia who have helped me know where to look for legit information.

A site like MedNexus is needed for not just those people looking for medical information on fibromyalgia but for all medical conditions. MedNexus states that it is a medical search engine for patients – think “Google for Medicine”. They “believe having access to the right medical information can change someone’s life”.

So how easy is it to use?

The search was very simple to do. I simply typed in the word fibromyalgia in the search box. The search showed 3262 results. It is divided into the following categories;

  • Health Topics
  • Published Research
  • Ongoing Clinical Trials
  • Forum Discussions

Another search option is located on the front page giving you the option to choose Diagnosis, Treatment, Management and Rick Factors which will give you detailed information regarding those topics.

I am personally affiliated with 3 national groups that focus on chronic pain and fibromyalgia so I was curious as to how they decide what information to post because even though they do have a lot of great information I saw a few areas that could use improvement.

So, I decided to ask  Kevin Ann, PhD/Co-Founder & CTO of MedNexus “How they do decide what information to post?”

He told me that “At the moment, we are mainly using government sites and well-known patient organizations for the health info pages. We plan to include more sites and index more content in the coming weeks, with more input from users and advocates like yourself. As for journal articles, we pull from the top few percent of journals for the published research. For the forums, we’re pulling from a core group of the highest traffic forums.”

I believe that this site is going to be a great search engine for anyone wanting to research medical information. I have bookmarked their site and am looking forward to watching them grow and develop it.

cropped-fibro-small.jpg

 and then I had a look at the site…

WOW!

Check it out to see what I mean.

BTW my part was not sponsored.

 

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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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.

invisible

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:

Tell Them

great make upI’m sure that some of you have seen this. I have seen and read it many times…each time, it brings tears to my eyes. I don’t know who wrote it. I don’t even know if it’s true – but it is beautiful!

(Warning: may cause tears)

One day a teacher asked her students to list the names of the other students in the room on two sheets of paper, leaving a space between each name.

Then she told them to think of the nicest thing they could say about each of their classmates and write it down.

It took the remainder of the class period to finish their assignment, and as the students left the room, each one handed in the papers.

That Saturday, the teacher wrote down the name of each student on a separate sheet of paper, and listed what everyone else had said about that individual.

On Monday she gave each student his or her list. Before long, the entire class was smiling. ‘Really?’ she heard whispered. ‘I never knew that I meant anything to anyone!’ and, ‘I didn’ t know others liked me so much,’ were most of the comments.

No one ever mentioned those papers in class again. She never knew if they discussed them after class or with their parents, but it didn’t matter. The exercise had accomplished its purpose. The students were happy with themselves and one another. That group of students moved on.

Several years later, one of the students was killed in Vietnam and his teacher attended the funeral of that special student. She had never seen a serviceman in a military coffin before. He looked so handsome, so mature.

The church was packed with his friends. One by one those who loved him took a last walk by the coffin. The teacher was the last one to bless the coffin.

As she stood there, one of the soldiers who acted as pallbearer came up to her. ‘Were you Mark’s math teacher? ‘he asked. She nodded: ‘yes.’ Then he said: ‘Mark talked about you a lot.’

After the funeral, most of Mark’s former classmates went together to a luncheon. Mark’s mother and father were there, obviously waiting to speak with his teacher.

‘We want to show you something, ‘his father said, taking a wallet out of his pocket. ‘They found this on Mark when he was killed.. We thought you might recognize it.’

Opening the billfold, he carefully removed two worn pieces of notebook paper that had obviously been taped, folded and refolded many times. The teacher knew without looking that the papers were the ones on which she had listed all the good things each of Mark’s classmates had said about him.

‘Thank you so much for doing that, ‘Mark’s mother said. ‘As you can see, Mark treasured it.’

All of Mark’s former classmates started to gather around. Charlie smiled rather sheepishly and said, ‘I still have my list. It’s in the top drawer of my desk at home.’

Chuck’s wife said, ‘Chuck asked me to put his in our wedding album.’

‘I have mine too,’ Marilyn said.’ It’s in my diary.’

Then Vicki, another classmate, reached into her pocketbook, took out her wallet and showed her worn and frazzled list to the group. ‘I carry this with me at all times,’ Vicki said and without batting an eyelash, she continued: ‘I think we all saved our lists’

That’s when the teacher finally sat down and cried. She cried for Mark and for all his friends who would never see him again.

The density of people in society is so thick that we forget that life will end one day. And we don’t know when that one day will be.

So please, tell the people you love and care for, that they are special and important. Tell them, before it is too late.

Pay It Forward

payFor Christmas (and any other time of the year), how about we all try to do, at least, one nice thing for another person?

Remember the movie, Pay it Forward (my favourite movie of all time!)?

Wouldn’t it be great if the world was a nicer place?

FCK

This piece is from Jess at Discovering Me, a member of FCK: a directory of blogs that help spread knowledge and awareness of Fibromyalgia.

This is INITIATIVE!!! 

In its simplest form it is thinking of and planning something, you can do in the form of a physical job or task and following this through to completion.

I’m not talking about grand plans that need grand rewards. There should never need to be any kind of self boost from helping someone. This isn’t something you do and then plaster all over Facebook to your friends, or blog about.

Simple examples of Initiative:

For the husband

  1. Husband sitting watching favourite T.V. show can just sit there OR he could use some initiative and fold the washing that Wife has washed/pegged/unpegged/brought in off line/left in basket hoping said Husband may tonight have found a spare can of initiative in refrigerator not another beer can.
  2. Husband has told Wife it is her night off dinner duties. Husband has no idea how to cook so you could either ask wife how to do everything – starting with what shall we have for dinner… OR you could use some initiative either plan a meal from a recipe book, online, call your Mum/sister/Mother-in-Law/best friend. But do not tell Wife she has night off and then have Wife wishing she had just bloody well done it herself as it was easier. All else failing order takeout.
  3. Wife gets told its her day to have a sleep in. Husband can tell she is tired. Husband can tell children to quietly watch tv and get their own breakfast while he stays in bed too on his computer/phone/tablet OR he could use some initiative and take the children to a special breakfast outing somewhere followed by a morning out with Daddy {while Mummy rests in peace and quiet}
  4. Husband offers suggests Wife has an early night as things are getting on top of her lately. Muchly appreciating the offer exhausted Wife goes to bed, then Husband sits and watches T.V  OR you could use some initiative and do the dishes, pick up the dirty washing, fold and put away the clean washing etc etc. There is nothing worse than going to bed for an early night to get up the next morning and find that nothing got done and you are a day behind on chores.

For the new parent 

  1. Make a few home cooked meals/baking {that are suitable for freezing} and drop them off in the first few days/weeks after the birth of their new bundle. This is the mother load initiative. Dinner time is called the witching hour in households with children for a reason. Make sure they are in containers that can stack neatly in the freezer and can be reheated {the supermarket and dollar stores have these}. Write on the containers whats in them – it saves trying to guess what tasty treats you may be getting and find tonight we are eating lammingtons!
    A really organised friend may even be able to get a few friends on the go with this to have a roster system going where hot meals are being delivered at tea time. I prefer the reheat option to gives you the control over what time you eat and if you are having a super organised day and managed to do dinner yourself you still have back ups in the freezer. If you are going to go with a roster of freezables make sure the organiser has spied out the available freezer space – usually the Dads are the go to option for this they never say no to food where the Mums may feel bad or that they aren’t doing enough as a mother blah blah. This is help/gift/initiative not judgement
  2. When dropping off presents – unless you have arranged a time or can see/hear movement – don’t go knocking and expecting to be let in. Leave the present on the doorstep with a lovely note/card and arrange a time that is suitable with the new parents to stop by again. Ahem I hear initiative.
  3. Finally getting to see the baby – when you arrive baby is asleep and Mum looks exhausted. Hello initiativeeither let you friend know you are happy she/he/they are still alive and shoo them off to bed while you leave them to rest and you will catch up soon. OR offer if there is anything you can do – hang out some washing, put a load on, fold some, some ironing, take an older child with you some they can rest, do some dishes, vacuum. Just use some bloody initiative.
  4. If by chance you actually make it in the door for a visit and everyone is alive, well and rested initiativedoes not go out the window. This is where YOU get up and make the cuppa and while you are there you also might do some washing up or stack the dishwasher. You may also realise the fridge is almost bare due to new baby and no time to shop – so make a mental note to either do a small online shop and have it delivered or go to the grocery store,  fill a box and drop it off of some essentials, easy snacks and a few treats for Mum (milk, bread, butter/marg, yoghurts, fruit, cold meats, nuts, some chocolate, snack bars etc etc).
  5. Don’t stay too long Babies get tired, Mums/Dads are exhausted. Unless you are Mother/Father/Brother/Sister/ Aunt/Uncle and you are staying at the house to HELP (not be a pain in the ass and be waited upon by your already exhausted children/siblings). Use initiative and know when its time to go – or when you need to stay longer. Ask if you should leave and know when they are being too polite to tell you to feck off already!
  6. DONT give advice unless it is asked for. Use some freaken’ initiative babies are all different and so are the parents. What works for you doesn’t work for everyone. Be there to listen and if you are asked for advice give it but always add this is what worked for me. That way they don’t feel like they left some manual behind that everyone else got or feel judged that you could do it when they so clearly are having a tough time. Tell them about a struggle you had to let them see we all fail at this and somehow it all turns out okay (ish).
In public 
  1. Old lady with shopping walking towards door struggling with bags OR you could practice some initiativeand hold open the door, offer to carry a bag and help her to her car. Even better! get the kids to help! {Teach your kids initiative now people before it’s too late}
  2. At the park little boy on trying to get on swing. Mum juggling newborn saying I will feed you once Johnny has his swing. You could think poor child, welcome to the real world, you are going to be ignored a lot more than just this now! OR you could say to the Mum is it ok if I help him up and give him a push? I remember whats it’s like to have my hands full! Use some initiative Mother will be grateful son got swing he has harped on about for past two weeks and she is able to feed baby who is no longer wailing like a fire truck.
  3. You see a mobile phone sitting outside the grocery store – clearly forgotten – no one in sight. You could think. Poor buggers probably wont be there by the time they come back OR you could hand it in at the grocery store service desk using your friend Mr. initiative.
  4. You are at your favourite family restaurant – The Golden Arches. After you have enjoyed your meal knowing the children will be eternally grateful {until the next time you have a fight which will be in approximately 1.5 minutes when you tell them you are not playing on the playground} you look around a see all the tables lined with trays and rubbish. You could get up and walk away thinking the lobby girl is going to have fun once she gets out here OR you could use some of that awesome initiative to go and put your trash in the bin and the tray on top. How hard was that? Would you expect your children to leave your table looking like that? So why is it okay just because you are out??

Initiative works best when you also have common sense and know your Husband/ Wife/Parents/Children/ Family/Friends well. If you know they are lacking support but there is no way you can help due to time and space try take the load off by sending a gift in the mail to let them know you are thinking of them. You can even do most of it online these days where you don’t even have to go to the post office.

If it is a family member rally the family {there may be a group of close friends instead} to share the load and see what you can all do between you. Everyone has different talents and abilities and between a group of people there should be a few ideas to help out.

Just don’t do nothing! ACTIONS SPEAK LOUDER THAN WORDS. Words are great and touching when we need some uplifting but action it by putting them in a really nice card and posting it – to say hey! I thought of you enough to pick this card especially for you, and then said lovely things too.

I think the world could be a better place if we could all learn to use a little initiative.

Me, too – Thanks Jess!

I Couldn’t Be Happier!

smile-happy-yellow-faceWhen was the last time you said, “I couldn’t be happier…”? Happiness can be elusive. It can be fleeting. Too often, it can be lost in our modern world’s swirl of stress, multitasking, and 24/7 news. Today you are already thinking about tomorrow.

Positive Psychology, a Special Health Report from Harvard Medical School, is a “how to” guide to greater personal happiness. It will show you how you can surmount the obstacles that disrupt and diminish your ability to enjoy life to its fullest, with awareness and connection.

We all know money can’t buy happiness. So, how do we get it? Current research is confirming what many of us heard from our elders and spiritual leaders: satisfaction comes with being engaged, doing good, and focusing on the present.

In this report, you’ll see how positive psychology is helping men and women use their psychological strengths to increase attentiveness and concern, and draw greater fulfillment from each day’s experiences.

Positive Psychology will help you identify your unique strong points. You’ll gain an important understanding of the role of gratitude and how it can be successfully cultivated and employed. You’ll learn the keys to “going with the flow” — becoming more at one with whatever you are doing. The report will also give you practical strategies for maximizing concentration and eliminating distractions.

girl-happyYou’ll read about the key role of mindfulness, the ability to “live in the moment” fully and without judgment. You’ll be introduced to techniques for savoring life’s pleasures, large and small, with equal enthusiasm and enjoyment.

The report offers helpful guidance on using positive psychology techniques to develop the resilience to handle difficulties more easily. Plus, you’ll read about the significant effect positive emotions have on health and longevity, how positive psychology’s principles can enhance personal relationships, and much more.

Order your copy of Positive Psychology now. You’ll be happy you did!

To your good health,

Anthony Komaroff, M.D.
Professor of Medicine, Harvard Medical School
Senior Physician, Brigham and Women’s Hospital
Editor in Chief, Harvard Health Publications

Objectively Painful

pain leveldoc

How much does that question piss you off?

Researchers from the US claim that they have evidence that pain may leave a distinct ‘signature’ in the brain that can be ‘seen’ with specialised MRI scans. When researchers exposed healthy volunteers to a painful dose of heat, it left a reliable pattern of brain activity that could be viewed on functional MRI (fMRI) – a type of imaging that charts changes in blood flow through the brain.

This ‘signature’ was able to predict people’s subjective pain ratings with more than 90 per cent accuracy, and it distinguished heat-induced pain from other feelings, like warmth and emotional pain. However the study looked only at short-term pain in healthy people.

And, unfortunately, earlier research has shown that brief “experimental pain” in volunteers is very different to chronic pain in patients thus the neuro-signature is different.

But, an Australian study, led by Professors Philip Siddall and Michael Cousins in 2006, identified key brain areas associated with chronic lower back pain and compared these findings with the brain of people with no back pain using MRI and MRS (which shows biochemical changes in the brain). This study reported that the brains of patients with low back pain could be distinguished from those without pain with an accuracy of more than 97 per cent. A later study by the same group made similar findings in people with spinal cord injury and neuropathic pain (nerve damage pain).

288. rate your painThese findings suggest that there may be a way to objectively measure our pain objectively, rather than using the current subjective method of asking patients to rate their pain on a scale from one to 10.

We may never have to hear that question ever again!

FINALLY…

Canadian researchers have released the first set of guidelines to help doctors diagnose and manage Fibromyalgia.

The evidence-based guidelines are the first national set in the English-speaking western world, said Dr John Pereira, a co-author of the guidelines from the University of Calgary’s faculty of medicine and a physician at the Calgary Chronic Pain Centre.

“For many years health-care professionals dismissed fibromyalgia as a non-existent condition. And more recently, while people have accepted that perhaps it does exist, still patients were told there was nothing that could be done for them,” Pereira said.

“In these guidelines we have clearly listed how to diagnose this condition and how to treat it effectively. So while there’s no cure for fibromyalgia, there are now good treatments that patients can consider.”

Main-Picture-Licensed-With-CaptionBecause of the prevalence of the condition, the guidelines recommend that primary care physicians take over the diagnosis and management role that has often been left to specialists.

The guidelines suggest a multi-modal treatment such as exercise, cognitive-behavioural therapy, education, self-management and relaxation techniques as well as medications that target a patient’s most bothersome symptoms: pain being the most serious.

The goal of treatment is to improve symptoms and “optimize function,” according to the guidelines. There is no one ideal treatment, although the guidelines say management should be tailored to each patient’s symptoms.

“Currently, there is no cure for fibromyalgia, but the guidelines set out the most appropriate management strategy,” said rheumatologist Dr Mary-Ann Fitzcharles, a corresponding author from the Research Institute of the McGill University Health Centre.

So, wherever you are in the world, perhaps this is something you can show your doctor/s to help establish your treatment plan.

Are You Sleeping?

frere

Do you get enough sleep?

This is what happens to your body if it’s deprived of sleep:

  • You have problems with memory and concentration.
  • You have problems finding the right word.
  • You get irritable – you think so?
  • Neurotransmitters in the brain become altered.
  • You become more susceptible to infection.
  • At its extreme, sleep deprivation can lead to death.

h1sciqsleepwalkingIt seems that no matter how many Ambiens (zolpidem) and Lunestas (eszopiclone) we take, we wake up feeling like shit (sorry – there is just no other word!): feeling hung over and inattentive. So much so that the FDA recently cut recommended doses of Ambien and other drugs that contain zolpidem for fear that their use, even the night before, might impair driving or other activities the next day.

This is because Lunesta and Ambien affect GABA receptors, which are found throughout the brain and are associated with side effects, including thinking disturbances, and deficits in attention and memory, explains Jason Uslaner, lead author of a study published in the April 3 issue of Science Translational Medicine.

A new study funded by Merck (of which Uslaner is director of In Vivo Pharmacology at Merck & Co.) has shown that a new class of sleep medications appears to help people fall asleep without causing grogginess the next day (YES! You did read that correctly!)

These new medications – known as dual orexin receptor antagonists (DORA) – target a more specific region of the brain than the other popular sleep drugs, promoting sleep without affecting cognition.

About 15 years ago, scientists discovered chemical messengers known as orexins, which are released by a relatively small brain region known as the lateral hypothalamus. lateralThis area of the brain releases orexins during the day to keep us awake and lowers levels at night so we can sleep.

The appeal of orexin antagonists, said Dr Michael Thorpy, director of the Sleep-Wake Disorders Center at Montefiore Medical Center in New York City, is that they “target a system that’s more specific for sleep.”

That means, theoretically, fewer side effects and perhaps less of a tendency to be habit-forming, Thorpy explained.

Merck already has one such drug, suvorexant, under review by the FDA.

But with this study, Uslaner and his colleagues investigated a compound called DORA-22, which has the same mechanism of action as suvorexant, to see how it fared alongside Ambien, Lunesta and also diazepam (Valium) in rats and rhesus monkeys.

DORA-22 did not lead to the same mental impairments as the other three drugs. Rhesus monkeys and rats performed just as well on memory and attention tasks shortly after being administered DORA-22 as they did on the placebo.

This is the first time in years that scientists have targeted a totally different receptor in the quest to combat insomnia, said Dr Alexandre Abreu, co-director of the UHealth Sleep Center at the University of Miami Miller School of Medicine.

444-36-cartoonBut many questions remain as even experts note that findings from animal studies do not always hold up in human trials: Do the drugs truly have fewer side effects? Will they be habit-forming? And will they change the quality of sleep in any way?

Those questions will only be answered with more testing and use in humans…(waiting…waiting…waiting…)

 

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