What Not to Say to Someone With Migraine

 

What Not to Say to Someone With Migraine     12 Phrases We’re Tired of Hearing

Those of us who suffer with chronic migraine pain have probably all experienced the insensitive, and sometimes outrageous, comments made by those around us. These are typically people who do not understand what it is to live either in pain or in fear of the next attack. Strangely, it has occurred in my life with alarming frequency and from surprising sources, such as the misguided advice of an ER doctor and close relatives without a clue.

It is frustrating when you are already suffering and feeling like you are just getting by, and then someone says something so ridiculous or insulting there really is no polite response. I say very little in those instances, though a comeback is playing in my mind.
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Here are a few of the top insensitive comments about migraines we have all heard at some point. May it serve as a guide of what not to say to someone with migraine.

“You should just drink more water.”

Yes, I am aware
dehydration
can cause headache pain, but this is not my case. I drink plenty of water every day and I drink more when I feel a migraine is coming on, but that is not what triggers my migraines, nor will it solve my chronic health issue.

“Have you tried (insert medication name here)?”

Why yes, I don’t actually just sit there and take nothing to try and stop the crushing pain. I am aware there are things like Excedrin Migraine, Aspirin, Imitrex, Aleve and even Botox. I would have to live in isolation, without television or communication with any doctor to not have at least tried these obvious, well-known migraine medications.

“There is already a treatment for migraines, but the big pharmaceutical companies want you to stay sick.”

I’m not sure who you know that has been cured, while others remain out of the loop, but I am pretty sure the ones who produce a cure would rake in the money if that were at all true. There is no cure as of yet.
“Think positive! You are attracting negative energy and manifesting this condition. It is all in your head.”

It is an actual condition that occurs in my brain — which is located in my head — so you are partially correct, and that area sends out signals of pain to my nerve sensors. It is actually mostly caused by triggers (stress, light and certain scents) and my body’s hormones, and you would know about these concrete reasons if you were to actually research the science behind migraines. There is nothing in there in those medical studies about positive thoughts or energy saving me from an attack.

“We all get headaches.”

Yes, this is true, but not everyone gets migraines and they are not the same thing. Comparing a headache to a migraine is like comparing a soft summer rain to a hurricane. Unless you have felt this, you cannot and should not make a comparison.

Next page: “You don’t look sick,” “You need to get more exercise,” and more phrases we hate hearing.

© 2015 newlifeoutlook™ All rights reserved.

Early Signs and Symptoms of a Migraine Attack

Early Signs and Symptoms of a Migraine Attackwpid-wp-1432820193159.jpeg
By Editorial Team—July 1, 2014
As we know, people with migraine experience a vast number of symptoms during a migraine attack, and every person’s experience is unique. In addition to actual symptoms during an attack, migraineurs may also encounter specific signs that an attack is on the horizon. We asked our Facebook community if they have any unusual early migraine signs, and over 300 people responded!

Ten or more people said that they experience the following before a migraine attack:

Yawning
Watery eyes
Sensitivity to sound
Neck pain/stiffness
Sensitivity to smells
Mood swings
Food cravings/hunger
Vision changes
Numbness/tingling
Nausea
Auras
Sensitivity to lights
A cold nose
Eye pain
Fatigue
Some other commonly reported symptoms were difficulty concentrating, slurred speech hiccups, sweating, droopy eye, tasting metal, frequent urination, jaw and/or eye pain, runny nose/sinus pressure, thirst, and muscle tightening.

Here are some of the comments from the members of our Facebook community:

I yawn a lot:

Yawning is a big signal…another of mine is the inability to listen to whoever is talking. I drift off and find it irritating.
I get the yawning. And one eye will water constantly until I’m in full-fledged migraine status. I am sensitive to smell as well.
Yawning, watery eyes, vision changes, irritability, sometimes it just appears ugly unexpectedly.
Thanks for sharing all of this. I get the yawning too. It took me a long time to put it together with migraine. It’s very distracting. Sometimes I get the sweats. Does anyone, ummmm urinate a LOT? This is the oddest symptom I get, and I swear if I am in the ladies like all day, I get a migraine, a bad one, within 36 hours.
I yawn like crazy! I always have to apologize, my nose and cheeks get cold and eyes go a little funny. Lately I smell smoke. The back of my head and neck go rigid, I have been using Tiger Balm to help. Sometimes I have to wrap myself in multiple blankets. I have yawning too. Never heard of anyone else with the same issue. Yeah. I am not crazy.
Yawning, watery eyes and Super Smell!
Yawning is a big thing with me, also. Took a while to figure it out, but now when I yawn the people at work say uh oh, are you getting a migraine? They notice it before I do!
Nausea is a big signal for me

I get extremely nauseous. The back of my head and neck get sore. I get extremely cold and cannot get warm.
Nausea, yawning & hiccups.
Nausea & taste of metal in my mouth before migraine even hits.
I get that nausea feeling, back of head and neck get stiff and sore, and I get super human smelling and hearing…. everything intensifies before a migraine and during and as it eases away.
My vision is affected

Blurred vision and an aura.
Sharp pain behind my left eye, always left? Then noises, light and smells get more intense right before it hits. BUT once I have a migraine I can’ t sit still or my whole body throbs. I know my blood pressure is high at the time due to the pain. So until the pain eases, I pace and pace.
Sore eyes, nausea, irregular heartbeat, trembling hands and much more. To me … the real pain and sadness is that I cant read my books.
I get irritable, spacy, change in vision (every thing seems brighter or duller), visual disturbances (spots that i can not see through), lessened energy, confusion, weakness and disorientation.
Blurry vision…difficulty speaking & processing info.
Mine start with sore eyes, my neck starts to bother me. I can feel the pressure thing as well Angela. But mine usually start between my eyes and neck at the same time and eventually meet in the middle then I get the pressure feeling.
Never noticed yawning…. But I will get a warning of seeing auras and other visual things like little “shooting stars” across.
I get a sharp pain in my right eye then white spots then down for a few days. I get anywhere between 3 to 6 migraines a week.
I have a lot of neck pain/stiffness

Sore joints, especially back and neck, irritable (my poor family), clumsiness, forgetfulness, crippling headache, sensitive eyes.
My neck becomes very painful, which for me means a migraine the next day
For me, usually the night before, I get these really bad pains in the back of head on the left side. Then the next day I have a killer migraine that knocks me out of my daily life. I also see spots and lights.
Neck pain. Feels like I slept wrong and then it feels like I have a giant weight on top of my head compressing my neck. I used to get them at the very least once a month. Since I started MM I had my first one in almost 2 years!
Do you encounter any unique symptoms before you get a migraine? Share your experience with us in the comments!
The members of the Editorial Team are either employees of Health Union, the parent company of Migraine.com, or professional medical writers who are contracted to work for Health Union. Often times we collaborate on articles for the site that may cover a broad range of topics from news articles, reports from our In America surveys, or a summary of feedback that we’ve gathered from our community members. We are very diverse in our backgrounds and expertise, so sometimes we may write as individuals or as a team.

 

 

Migraine Guilt By Kerrie Smyres

Migraine Guilt
By Kerrie Smyres October 16, 2015wpid-wp-1432820217736.jpeg
I feel guilty that because of a migraine, I ___________________.

Missed my son’s school play
Couldn’t go to my daughter’s soccer game
Canceled plans with a friend
Skipped Sunday dinner with my family
Was unable to walk my dog after work
Had to have a coworker cover for me
Left my group hanging on a class project
However you fill in the blank, most people with migraine have said that they feel guilty about something they did (or, more often, didn’t do) because of a migraine attack. The reasons for guilt run the gamut. I have even felt guilty for throwing away vegetables that went bad because I was too sick to prepare them.

The first time I wrote about migraine guilt, a headache specialist who reads my blog asked why I felt guilty when I wasn’t to blame for any of my perceived failings. I didn’t get what she was saying. It didn’t matter to me that I wasn’t to blame—I let people down (even my local farmer) and felt guilty for having done so. Recently, though, the seed that she planted nearly a decade ago began to sprout.

Guilt is what we feel when we have or believe we have done something wrong. It’s often called a useless emotion, but it’s a great motivator for changing behavior. Social worker and researcher Brené Brown describes it like this: “We feel guilty when we hold up something we’ve done or failed to do against the kind of person we want to be. It’s an uncomfortable feeling, but one that’s helpful. When we apologize for something we’ve done, make amends to others, or change a behavior that we don’t feel good about, guilt is most often the motivator.”1

You can apologize for something you believe you’ve done wrong because of a migraine attack, but there’s no behavior you can change. Having a migraine attack is not a behavior, it’s a physical state over which you have no control. According to Brown and other researchers, the guilt that I’ve always associated with migraine is actually shame. Brown summarizes the difference between the two: “Guilt = I did something bad. Shame = I am bad.”

Ouch.

Because I’m a glutton for punishment, I read Brown’s book on shame called “I Thought it Was Just Me.”2 I swore an astonishing amount, not out of anger, but in disbelieving recognition. Shame was the fuel for so many things I spent the early years of my disability doing: chattering nonstop to keep people from asking questions about myself for fear they’d uncover my secret; frequently saying, “I’m the kind of person who…” in order to define myself as something other than sick; beating myself up for doing and saying the wrong things.
I was ashamed for being disabled by an illness most people understood to be no big deal. I was ashamed that I had to cancel on friends and family so often. I was ashamed that I couldn’t will myself to get better. I was ashamed that no matter what I did, the symptoms kept getting worse. I was ashamed of not being the person I thought I should be. I was ashamed that this illness was a neon sign advertising my weakness and failure to all who cared to look.

I was steeped in shame, but called it guilt. Guilt felt rational and reasonable. I’d rather believe I felt guilty for letting produce go to waste than to admit how deeply ashamed I was that I couldn’t keep up with the simplest things in life. The guise of guilt let me focus on systems and schedules so I could avoid the desolation of shame. I thought I was trying to fix everything for which I felt guilty. I was really deflecting my attention from the shame.

The dark place of disabling chronic migraine is where the shame began to take root, but my fierce determination to hide the shame (even from myself) is what allowed it to burgeon. At a time when I was physically and emotionally depleted by migraine, self-compassion should have been a priority. Instead, I spent every spare bit of energy tending my shame. It grew so high that it nearly overtook me.
Now in her late 30s, Kerrie has had chronic migraine since she was 11. She’s been writing about migraine and headache disorders on her blog, The Daily Headache, since 2005. Kerrie is also the cofounder of TheraSpecs, which makes eyewear for migraine and photophobia relief.

 

Is migraine a disease or a condition?

Is migraine a disease or a condition? By Prof. Joanna Kempner—November 12, 2011
The International Classification of Headache Disorders (ICHD) offers a diagnostic definition of what constitutes migraine, but there’s no consensus about what migraine actually is.

Some organizations (i.e., the American Headache Society and the International Headache Society) refer to migraine as a disorder. Elsewhere, (including on this website) migraine is referred to as a disease.
Dr. William Young at the Jefferson Headache Clinic posed this question to a panel of 15 experts, academics, advocates, and patients. (I was a member of this panel.) We were unable of coming to consensus, but the outcome of our discussion will be published in the journal Headache.

I thought it would be fun to summarize our debate. I’d really like to know what you think migraine is.

Most of the panelists were torn between “disease” and “condition” as the best descriptor of migraine, although “disease” was slightly favored. They drew on three principles when deciding between the two words:

Biomedical evidence:
Panelists (especially the physicians in the group) wondered whether there was enough biomedical evidence to describe migraine as a disease. Panelists were particularly concerned about whether “disease” was the right word when migraine had such great variability. They worried that “disease” might be the wrong description for a person who had just one or two migraine attacks per year. Panelists who voiced these concerns were more likely to prefer “condition.”

Cultural meaning:
Panelists wanted to choose a term that built the credibility of migraine and which would help attract much needed resources. Panelists who expressed this concern were more likely to prefer the word “disease.” Panelists wondered if calling migraine a “disease,” might help people talk to their employers about sick days or get approved for disability.

Context:
Panelists thought that context mattered. They might, for example, refer to migraine as a “disease” in a room full of doctors in order to get their attention. But the doctors in the group worried that they might scare some patients if they described migraine as a “disease” in the clinic.
In the end, the panelists couldn’t decide what to call migraine, but I think that our debate can help all of us use language in a more thoughtful manner.

So what do you think? Is migraine a disease or a condition? If you think of migraine as a disease, is it always a disease? Or only when it is chronic and disabling?

*The Oxford English Dictionary provides the following definitions of disease, condition and disorder:

Disease: A condition of the body, or of some part or organ of the body, in which its functions are disturbed or deranged; a morbid physical condition; ‘a departure from the state of health, especially when caused by structural change’ (Syd. Soc. Lex.). Also applied to a disordered condition in plants.

Condition: A state of health, esp. one which is poor or abnormal; a malady or sickness. in a certain, delicate, interesting, or particular condition

Disorder: A disturbance of the bodily (or mental) functions; an ailment, disease. (Usually a weaker term than DISEASE, and not implying structural change.)
When you discuss migraine, what do you call it (or describe it as)?
A disease
A condition
An illness
A disorder
I don’t have a preference

 

 

My Mom

What do you do when the caretaker needs a caretaker?! Let me preface the following by stating that I love my Mother! She is my best friend, mentor, hero, inspiration, and my entire world. I am strong, tenacious, brave, empathetic, compassionate, caring, opinionated, passionate, giving, smart, sincere, loyal, protective, and too many years other traits to list, because of my Mom. As we’ve both faced adversity throughout our lives, we’ve been there for each other unconditionally. We may not always agree; but we find ourselves on the right path, regardless. We are always there for each other, good times and bad. She is my support system and I hope I am hers. She has been my rock all of my life and has never given up on me or turned her back on me. Even when it was deserved. In the past four or so years, as my chronic illnesses have rendered me unable to work, I have come to depend on my Mom for financial support as well as emotional. I have tremendous guilt over being a burden, but that is for me to deal with, not her. I feel that she did her part in raising me, and now it’s my turn to help her any way I can. The sicker I get, the harder it is for me to get to my numerous appointments for therapy, treatment, and testing. Besides the food store, pharmacy, and occasional lunch out, I don’t get out much. Which means Mom doesn’t get out much. More guilt! We haven’t made many friends here for various reasons and we are both extremely social people, who don’t do well without the social interaction. Lately, I’m much more comfortable at home, where I can hide and not worry about presenting a brave face to the rest of the world. I do occasionally feel too ill to make it to these scheduled appointments, and there goes more guilt. I push myself hard, but some days my body wins out over my mind, and I just can’t get out of bed. Mom does what she can, more emotional support, since she is unable to drive, due to vision loss from Macular Degeneration. She feels guilty for not being able to do more and that upsets me. It’s a vicious cycle of guilt, depression, anxiety, and panic. We are handling the situation as best as we can, tackling each new challenge one day at a time. Who would have ever thought that getting to a doctor appointment would be a challenge?! Our lives have changed dramatically as I’ve had my medical and emotional issues to fight through. And Mom is learning to cope without driving, a huge blow to her sense of self,  freedom, and independence. I have the extra “burden” of getting Mom to her own appointments, sometimes weekly, monthly, or on demand. The “burden”  is something I put on myself. Healthy or sick, there’s nothing I wouldn’t do for her without batting an eye. Especially after all she’s done for me my entire life. It’s more pressure on myself to not let her down. Ever! I can’t say no to her, as she asks for so little. All I want is to be able to give her everything! Not too much pressure, huh?! We are feeling our way through this crazy, scary, unknown future one hour at a time. But we’re doing it together!  I worry endlessly and obsessively about losing her and wonder how on earth will I cope on my own? My consolation is to remember everything she’s ever taught me and keep using these skills in my day to day life. I’m also in therapy to help me with coping techniques as this entire experience with chronic daily migraine and pain is uncharted territory for us both. But, in the meantime, we are going to enjoy our lives and be thankful for every sunrise and each beautiful new day. And together we will #AlwaysKeepFighting! and #StayStrong!

wpid-img_20150119_110400.jpg
Hope! 

How demoralizing it is to wake up with an unexpected migraine By The Migraine Girl—November 30, 2015

*FYI* If you suffer from any type of migraines and don’t follow The Migraine Girl, I urge you to do so immediately! J.

wpid-wp-1432820207013.jpegUgh. There’s something so totally demoralizing about waking up with a migraine, especially when I took steps the day and night before to lessen the risk of another day of this.

Yesterday* I did tai chi chih with my mom in the late morning, then we went out to lunch.  While we were at the restaurant, I started having hints of a migraine to come, but I thought, “No, that can’t be. Everything else is going fine, and I have a busy day ahead.” I decided I was imagining it.  The discomfort increased, however, and by the time my dad and I were out doing book deliveries for my bookshop business, I could tell the migraine was definitely on its way.  My sweet dad gets upset and protective when I tell him I’m sick, so I decided to keep the impending doom to myself. I took naratriptan when I got home and it didn’t work as fast as I wanted.  I put off work for the afternoon and decided to take a nap for an hour or so—I wanted to be in good shape for the evening.

You see, yesterday I had plans to hang out at a new board game café, The Rook & Pawn (I know—I’m nerdily excited about this, too!). I was going to buy a sandwich there and hang out with my sister and friends until it was time to head to the famous Georgia Theatre in downtown Athens, where one of the bands my husband leads was going to be playing a free show on the roof (how cool is that?). Turns out I kept dropping plans one plan at a time: first my afternoon work schedule, then my early evening out with friends, and finally the rock show. I just couldn’t swing it.

Some of my employees (who are friends of mine) were at Jim’s show and sent me pictures of him playing—he looked awesome, and I’m sure the band sounded awesome, too. My dad sent me a photo of the famous Georgia Theatre marquee, the band name “Los Cantares” lit up in lights. When I saw the photo, I was lying in bed by myself and felt a mixture of pride and sad isolation. I hated that I missed this show.

The naratriptan never really worked, so I ended up taking a pill out of my new prescription bottle: Tylenol 3, or Tylenol with codeine.  It calmed the pain down and made me sleepy, so that was good.  I comforted myself with the idea that when I awoke on Thursday, I’d be full of energy and feeling lots better after canceling plansthe day before and taking good care of myself.

But no.  I woke up with a migraine worse than yesterday’s, and the sky is wet and overcast and my Thursday to-do list has ballooned out of control since I put off so many work tasks yesterday, assuming I’d feel better by today.  I’m sitting on the porch with my cat, drinking coffee and writing this article and trying not to havetoo much self-pity.  Ugh. I’m just annoyed with this whole situation and more than worried about how I’m going to get everything done today.  I took my second (and, per the instructions, final) dose of naratriptan for the week and am hoping it’ll kick in today.  It was my best shot for quick relief since I can’t take another brand of triptan until at least 24 hours after my last dose of the first brand, and I am not going to wait until mid-afternoon to treat this beast.

I know I’ve written about this before: how hard it is to wake up with a migraine when you thought you’d be home free.  But I thought it merited another post since I think about it a lot—namely every time it happens to me and every time I hear about a friend or migraine.com community member who opens his or her eyes only to find that the beast has not been kept at bay as expected.

What are some of your coping skills? Can you remember a recent time when you were pretty confident you had a migraine-free day ahead only to wake up with another one?

*FYI, this was written at the end of summer 2015

Bookshop owner & migraineur Janet “The Migraine Girl” Geddis moved around a bit in her early 20s before deciding to make Athens, Georgia her home

Don’t You Cry No More

Second night in a row without sleep. Damn this pain! I want to be positive, but it’s so hard when you’re exhausted. Body, mind, and soul. I want a light at the end of the tunnel. A sign that things will get better. Affirmation that I won’t live the rest of my life like this. How much pain can a body handle?! I feel like I’m being tested for something, but I don’t know what. I give! You win! Can we stop now?! Endless cycle of worry, pain, anxiety, panic, side effects, different drugs…… It’s non-forgiving. It hurts! Physically and emotionally. Too tired to think, too painful to get up, too depressed to go on. The struggle is real. wpid-wp-1432820269510.jpeg

What the Internet Says About “Opioids” Says a Lot!

 

What the Internet Says About “Opioids” Says a Lot!

What the Internet Says About “Opioids” Says a Lot!

It’s safe to say that Google’s advanced search algorithms return search results that reflect the dominant content the globe is seeking on any given topic.  So, what do Google search results tell us about what the world thinks when it comes to opioids?

National Pain Report went to Google and asked that very question.  And, here is what Google tells us.

When you type in “opioids” into Google search, the search engine goliath returns 5,730,000 pages of content.  That’s a lot to cull through, so, thanks to Google’s algorithms, the browser makes calculations on which of those 5+ million pages are most relevant to you, the searcher.  Fewer than 15% of people ever even click the “Next” button to see results past the second page, so that’s where we focused our attention.

When we searched “opioids”, there were 24 results (non-advertisements) on the first two pages of Google.  We reviewed each of the results to determine if the content was:

  • “About Pain” (supported or reflected the proper use of opioids for the treatment of pain)
  • “About Abuse” (supported or reflected the misuse of opioids, addiction or death)
  • “About Both” (supported or reflected both proper and improper use of opioids)
  • “About Law” (supported or reflected content about arrests related to opioids)

Google search - opioids 150% of content related to “opioids” exclusively reflects abuse, addiction or death.

Only 4% of content related to “opioids” exclusively reflects the proper use of opioids to treat pain.

92% of content related to “opioids” includes abuse, addiction or death.

Only 46% of content related to “opioids” includes the proper use of opioids to treat pain.

That’s pretty telling.  The “Internet Machine” suggests that when the world thinks about opioids, it’s thinking addiction, abuse and death – not proper and legal use of opioids.  But, does this add up to the real numbers, or does it seem to reflect current trends in media, government and society (or big business)?

According to the CDC, about 12 million Americans abused or were dependent on opioids in 2013.  We used trusted Google to see if we could find the number of people who legally and properly use opioids in an effort to look at the size of this group (and we know it is HUGE).  With that number we would then be able to (however loosely) see if Google is exposing searchers to a reflective point of view on opioids.

Guess what?  That number (how many people legally and properly use opioids) is elusive.  And here’s why.

Ask Google a question, and you reliably get the exact answer you’re searching for, right?

Well, this is what Google tells us when we asked the question, “how many people legally use opioids?”Gogle search - opioids 2

Gogle search - opioids 3

Thanks Google.  You made our point.  We don’t blame you.  But, you are making things worse!

There is a major message that is being driven by government and media.  Just look at the first four Google search results above – all are US Government entities.  And, all of them are related to addiction, misuse, or the drug epidemic, something the government seems to believe is the only thing that opioids do.

And, the next two search results?  Big media with punishing headlines.

The Washington Post article titled, “The legal drug epidemic” leads off with this, “When is this country going to wake up — really wake up — to the catastrophe that prescription opioid painkillers have caused since they came into widespread use in the early 1990s?”  Thanks Google for answering the question about legal use of opioids with this.

CNN says that the FDA approval of a new pill to treat pain is… “Genuinely Frightening.”  When a new cholesterol drug gained FDA approval, CNN’s headline was, “FDA approves second in new class of cholesterol lowering drugs.”  When the FDA approved Addyi, CNN’s headline was, “’Female Viagra’ gets FDA approval.”

So, why is a new pill to treat pain “genuinely frightening?”

It’s because the “message” is that opioids are only about addiction and overdose and not about legal and proper use of important medicines.

Thanks Google.  Thanks government.  Thanks media.  You’re working very well together.

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There are 9 comments for this article
  1. Kristine (Krissy)November 28, 2015 at 12:21 pm

    Dr. Goodwin, you are so right. Many of us are in journalistic positions and we are also pain patients or medical professionals. The maddening part of all this has us reeling with emotions and anger. Thank you for reminding us of our duty to professionalism. And thank you for writing your reply. We need so many of you to do that, but understand the current ramifications.

  2. Jeremy Goodwin, MS, MDNovember 28, 2015 at 9:33 am

    I am a neurologist, adult and pediatric pain and headache specialist, and past chief of the division of pain medicine at a major west coast university medical center, trained at Stanford and Harvard, with degrees in psychology and comparative (neuro) pathology at the undergraduate and graduate level from the University of California at Davis. I am a strong advocate of patients and feel that the current government stance is not supported by the evidence and is totally misguided in its approach,often harming patient care where chronic non cancer pain is concerned even if it does address some legitimate concerns about poor prescription practice, addiction, accidental and deliberate overdose, abuse and misuse of controlled substances. Many of my colleagues who feel similarly are too afraid to speak up because of the perceived threat to their state licenses by the 50 medical boards of the USA. That threat is real snd clinicians have paid the price. The state board attitudes and actions are often not in line with their sanctioned publications that are required reading for all clinicians. California is an excellent example of this.

    The topic of this article is excellent but it’s execution is as poor as that of the 60 minutes ‘exposé aired recently. That was certainly not a documentary. It had s one sided agenda. This article I s one sided too and loses its ‘punch’ because of that.

    This ought to be expanded into a more neutral position showing both sides and without the sarcasm. It would then be more useful in countering misguided governmental agency attacks on how pain is treated.

    There is much judgment and hipocrisy involved on both sides and this needs to be resolved and removed in order for the as yet improperly acquired evidence to be subdivided to analyze very different circumstances, practices and behaviours of disparate groups currently lumped together as one. There is overlap and misinformation as well as disinformation involved by patients, clinicians and scientists alike where the fields of pain and addiction medicine is concerned. This must stop in order for a rational and carefully administered change to take place.

  3. Mark Ibsen MDNovember 27, 2015 at 5:36 pm

    Kristy: I think mono vision only affects depth perception.
    He is clearly blind.
    Just blind.

    Diane:
    “A person convinced against his will
    Is of the same opinion still”
    It is a shame we don’t get the same kind of support from our families as those with cancer.
    That just means we have work to do in sharing our stories.
    Our predicaments.
    Our authentic anguish at being betrayed and abandoned
    That pendulum is already swinging.
    God bless us every one.

  4. BrendaNovember 27, 2015 at 11:52 am

    It is so sad to think in this’enlightened’ time we live in that pain is still a bad word. Tell anyone you have something hurting and their minds automatically go to addiction. And to think someone can’t get pain meds after something as painful as hip or any surgery is asinine. It is abusive. Even our beloved pets get pain meds because the vets don’t want to see them suffer anymore than we do.
    Thats it!! Yes I will go to my vet !! Bet I would be treated better than by my doctor. Anyway I could go on for days, ha! but who has the energy to write let alone read a long post.
    Thanks for listening,,Brenda in Bama….

  5. Steve P.November 27, 2015 at 11:39 am

    I would like to point out that the CDC is equating long-term opioid use to “abuse”, even if you are taking them as prescribed.

    “According to the CDC, about 12 million Americans abused or were dependent on opioids in 2013. “

  6. Cathy CooperNovember 27, 2015 at 10:10 am

    This Article shows the misinformation that is spreading, with no real common sense to counter it. Whether the subject is Opiates, The “War” on whatever is popular this week, it seems to be getting worse. It is truly frightening and disappointing. People watch the “News” go Online, or read Newspapers and think that they are informed. There does not seem to be any real analysis of what is “True” anymore. The DEA has been spreading misinformation for years, leading to a bigger Drug Problem. Apparently they can say whatever they want to justify their funding. They never get called out on the Lies, or have any sort of accountability.
    The Media appears to be giving us the “News” but it is Slanted in the favor of sensationalism, and has an agenda. The Coverage of our current National issues is frightening. It is very one sided, I watched the coverage of the protests against Racism, clearly showing how awful the Protesters were while downplaying the reason for the Protests. People who I though were at least Open Minded, were parroting the theme. We have a System that is functioning by instilling fear, hate and misdirection.
    Our Country seems to be breaking down. The Media Targets a new group every couple of days.
    Chronic Pain patients are just another scapegoat for the problems this country is facing. There is no empathy or common sense because of the labels. In watching some of the Political discourse lately some really ugly themes are emerging. I try to look at the big picture, and ask “who does this benefit?”. Big Insurance, Big Pharma, even Workman’s Comp.
    There is a theme, that it is OK to ignore people in pain, because Mainstream Media, and the Insurance companies have made the subject about “Addiction” . Even when people have direct personal knowledge they ignore it, and it is OK. It is like an alternate universe. It is not just pain patients it is anyone painted as a scapegoat to avoid the real problems. It is deeply disturbing to me the misdirected hatred and rage turned to whatever group. It rings of the Nazi’s. The misinformation campaign is not being questioned. People I though were descent human beings now have an ugly opinion about so many fellow human beings. These ugly opinions are being repeated by the Media, as if they are true. They give credence to the justification for some horrible acts. A certain percentage are actually worked up to violence against the latest target for rage. Immigrants, refugees, the disabled, certain races, it is getting out of control. The ones benefiting form this are the ones profiting off of it, The War Machine, the Pharmaceutical Industry, Insurance are all making Billions while the real issues are ignored, The DEA and other Agencies get more funding if they can scare us. It is getting ugly out there. I am afraid to even mention Chronic Pain, I would be patronized and judged. I am afraid to speak up anymore, it has come back to bite me. I am shocked at the people who believe this nonsense, and there are some that don’t but have to repeat it no matter how ridiculous. There is no accountability in Health Care anymore, I can’t imagine the mindset it takes to ignore the suffering of even Cancer Patients, and people with clearly visible injuries. There is no though to their quality of life, only the fear that they might get addicted! This has led to the justification for not treating people and not having the least shred of empathy. My Mother passed in a Nursing Home and was not even given Acetaminophen after hip surgery. She could not articulate that she was in pain. I know people with serious pain that drank themselves to death, and were afraid they would get addicted to pain meds. That is what their Doctors told them. Death by Alcohol does not seem to register, but it is a horrible drawn out death. They eventually bleed out. This does not get mentioned in their Articles.
    Opiates have been around for thousands of Years, they don’t get Patented, unless they are formulated slightly different. The “new” pain medications have more side effects, minimal effect on pain, but they are Marketed as if they work. The effect of the ignorance and the pursuit of profit has undermined Scientific research. Very few new drugs on the market are significantly better than the old ones, but they are marketed like they are. Some are more dangerous, yet they make Billions for the drug companies. Medicine is so profit driven that there are not many real “Breakthroughs”. There is no real Science behind being applied.
    I used to wonder how do these people sleep at night? I suppose they can, because they believe they are “helping”. Many have contempt for patients, they blame the patients for the lack of re-reimbursement and paperwork generated by the Insurance Companies. The misinformation helps to justify treating people this way. It is not just pain patients either, it is whatever group they blame this week.

  7. Diane SuccioNovember 27, 2015 at 9:18 am

    @Krissy,
    My kids are the same way. My youngest just tells me I’m a junkie. At 1st it hurt but then angered me because of the BS he looks at on Google, etc…. I have up trying to explain anything to him.

  8. Pharmacist SteveNovember 27, 2015 at 8:49 am

    All one has to do is look at this websitehttp://www.dea.gov/pr/news.shtml it lists all the press releases by the DEA’s HQ and 21 district offices… which is then regurgitated by much of the news media. To understand the Google results.
    What you don’t hear about is that every time that you see a BIG DEA drug bust.. that normally represents only 1% of what is actually getting past the DEA and on to our streets for abusers/addicts to us.

    “If you tell a big enough lie and tell it frequently enough, it will be believed.”

    ― Adolf Hitler
    I find it interesting that they are lumping addiction and dependency into the same group.. but.. this follows the recent CDC guidelines that basically states that there is no longer a distinction between addiction and dependency.. everyone who consumes opiates on a long term basis has a OPIATE USE DISORDER..

  9. Kristine (Krissy)November 27, 2015 at 8:42 am

    Good thought to do this, NPR, but I’m not surprised. I recently wrote a small article for you and I sent a link to my brother so he could see it. He sent me back a link on drug addiction. I have to give up trying to convince him what is wrong with me. He doesn’t read about my illness, he only sees the “frightening” thing he calls addiction. I don’t even think he looks at “medically dependent,” because I tried to explain that to him too. He is a highly-intelligent, successful business man who knows a lot about a lot. But he seems to be somewhat blind in one eye.

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