Chronic Pain Sufferers – Anger and Hope

Chronic Pain Sufferers – Anger and Hope

A couple of recent stories on the National Pain Report have elicited some strong reaction from those who visit our news website.

The first story – which we ran on June 4 – highlighted a Time Magazine story on pain killers. Suffice it to say our readers weren’t too happy.

The second – which we ran on June 11 – highlighted a talk that Terri Lewis Ph.D gave to an International Pain Conference in Chicago where Lewis argued that patients and providers need to work together – and she had a sense that maybe things are starting to change for the better.

First, some reaction from the Time Magazine story.

Most of it was critical because the readers, like many physicians we’ve spoken with in recent months, think that there are two issues – one is addiction and the other is chronic pain – and they have been blurred into one: addiction. The result? Chronic pain patients who use their medications responsibly think they are being branded unfairly.

Some examples:

Stacie Tessman thought the article was one sided:

“This article show just one side of the problem” she wrote. “There is terrible misconceptions regarding the medical field and it all goes back to big money and big pharmaceutical companies getting what they want.”

A woman who identified herself only as Hannah wrote:

“I think the article missed the mark. This is an epidemic, but it isn’t the patients that are monitored by their doctors for chronic pain that are the problem. The problem is doctors prescribing narcotics and then the patients don’t take them as prescribed and/or the doctors don’t follow up.”

Amy People thinks we have a pain epidemic, not an addiction epidemic:

“I am 34. So many of my friends that I grew up with are in chronic pain. It’s always either back problems of fibromyalgia. I don’t doubt their pain, and if their doctors were to cut them off they would probably turn to heroin just to numb their pain. What I don’t understand is why so many people are in so much pain? What have we done to deserve this? I don’t know what fibromyalgia is exactly, but it appears to be dreadful. What is causing our bodies to turn on us like this?????

Carissa Simao’s reaction was a concern about those who are addicted and those who suffer from chronic pain:

“I would love to see something done to stem the addictions but without punishing those who rely on these medications just to have a life worth living.”

Dr. Mark Ibsen of Helena, Montana has a story idea for Time:

“Let’s also note: there is no evidence that suddenly dropping people who have been treated with opioids is useful either. So study THAT and get some data. Please”

Secondly, the Terri Lewis story from Chicago which talks, as she often does, about the medical care model, which she believes is broken to the detriment of Both doctor and patient. She thinks change is possible.

The readers were hopeful, if not a bit skeptical.

Wrote Shannon Walker

“It also surprises me that we’ve gotten to a place where pain patients are being so marginalized and doctors are not standing up for themselves.”

A reader who described himself as Dr. Anonymous (we’re guessing that’s not his real name) thought Terri Lewis’ comments were spot on.

“Kudos for Terri Lewis!!! An OPEN dialogue is much needed. But at the present time I fear that doctors are much too fearful to engage in an open discussion. Doctors have not been able to band together because of threats (and actions) from the federal government claiming that it violates antitrust laws for doctors to band together.”

Dena Meeks noted the high burnout rate that Dr. Lewis discussed.

“This is an interesting article and I was struck by the high rate of burnout among pain specialists.”

It was a reader named Juli, a woman who lives in Portland Oregon that caught the optimism of the Lewis article.

“Finally! Somebody gets it. This needs to be addressed country wide…Not state by state.

I just hope I’m still alive to be part of the reboot. Right now my pain management is

under managed. I’ve suffered 34 years and am horrified that care is going backwards!”

Editor’s Note:

These are just some of the reactions the two stories have received. We invite you to comment on our work – we review each comment and publish many of them.

Also, as always we are anxious to hear your feedback not only on stories we write, but stories you think we should be covering.

Let us know by email (editor@nationalpainreport.com)

Follow on Twitter

@NatPainReport

@edcoghlan

 

Authored by: Ed Coghlan

There are 6 comments for this article
  1. Kelly W. at 12:13 pm

    I just came across this site when I was doing a search for people needing to stand together and get the word out that us chronic pain patients are being abused and ignored!! I am so mad and frustrated on how the DEA has got us cornered with no way to get our medications!! I suffer from CRPS in both of my ankles and legs and need my schedule II pain medication to make my life half way livable and functional! When they changed the hydrocodone scheduling to make all the abusers and addicts less likely to get them, they did nothing but take from the real chronic pain patients!! My prescription was due to be refilled this past Friday (and don’t forget that we have to get our refills at the 30 day mark….not sooner) and I went to my pharmacy to turn it in and THEY WERE OUT AND WOULDN’T BE ABLE TO GET MORE UNTIL THE NEXT FRIDAY!!! WHAT AM I SUPPOSE TO DO?? Well, I went to another pharmacy and they were out and then to the next town and both of those pharmacies were out too!!! I was told by the “chain” pharmacy that since my town ran out that the overflow came to them and now they can’t get any for 10 more days!!! The DEA only lets them get so many a month so I guess supply and demand is not a reality! I cannot go without my meds for 10 days and then hope that all the others waiting or on the waiting list wont take the next supply they get in….it’s a never ending cycle!! It is just like tossing a coin in the air to know whether you will get your medicine or have to run around the whole county to find the medication!! Who can do that??!! The DEA fails to realize that there is still the same legitimate chronic pain patients out there after the rescheduling and cutting the pharmacies supplies is not doing anything but keeping us from getting the medication we need to have a functional life!! It’s not fair and I want to SCREAM ABOUT IT! Why should I have to worry if the pharmacies in my town will happen to have my medication on the law scheduled 30 day refill? Well we shouldn’t!! Then if they have a waiting list, I probably wont get any from that delivery either because all the people on the list will get all them! THIS IS ABSURD! WE NEED TO STAND TOGETHER AND FIGHT THE DEA! Go to the news media and or social media to get our voice heard! There are more chronic pain patients that need their medication than the DEA allows the pharmacies to carry…this needs to change NOW!

  2. Jeff Riggs at 3:31 pm

    just stumbled onto this site yesterday and it’s amazing to me that there are so many in the same situation. It’s hard to just be quiet due to the shame that most doctors and pharmacists put us through each month. Usually feel alone in my struggle. I go above and beyond most days with my job as an adult educator in teaching culinary, giving back to my community with the goods we produce, being involved in a prominent youth organization with lots of activity / time (backpacking last weekend will be paid for in “extra” pain for a few more days), and raising a family for over twenty years. I’m lucky if I sit / sleep 4-5 hours a day.
    Just like I’m hearing, judgmental doctors, pharmacists, out of stock / will not fill that #, horrible pain and withdrawals each month for at least a day or two. Of course, I jump through all the hoops. Lots of time invested in just getting through life. As I’m sure you all know, the pain rarely ever goes completely, just gets better for a few, then worse again. Most hours of the day / night it is very noticeable, only 4-6 hours a day is pain free due to meds working.
    And yet, I’m the looser junkie.
    Frustrating!!
    Who knows. Thank you for listening. Really never get to share my story, of course, due to shame.

  3. David at 2:06 pm

    I have had chronic pain since I was hit by a car while riding my bicycle in 1991.
    Doctors AND the DEA have made living with pain also feel like being a criminal. I am looking forward to my 10th surgery later this summer. I hope to be able to take fewer medications afterward, but will always have pain to some extent.
    Do people who think we are malingering really believe I would rather subsist on my meager Social Security benefits than have kept my $50K/yr job?!

  4. jean Kirschenheiter at 11:35 am

    I suffer with chronic pain from spinal stenosis an fibromyalgia. Keeping informed on the national pain report has me optimistic that finally people understand what its like to feel like this every single day, the struggles we go through, we just want to be heard and be able to live a normal life.

  5. Larryk at 10:34 am

    *Treating people that are suffering

  6. Larryk at 10:34 am

    The problem is, we’re treating the symptom and not the problem. If my car tire had an air leak, I wouldn’t just keep putting air in it. I would figure out what was causing the leak and fix it. I know it isn’t nearly that simple for chronic pain, but I feel it is a good analogy. I’ve been in chronic pain since early 2006. It took me 6 more years to get the diagnosis of small fiber fibromyalgia. During which time, I went through at least 8 neurologist, just as many neuro surgeons (who concentrated on my low back) and numerous other doctors, psychiatrists and other odds and ends specialists.

    Even with a diagnosis, I still have no idea what caused this. Treating it is a shot in the dark. I was on opiods in the form of MS Contin for a few years. I’m off of that now. They were only partially effective in the first place. I’ve tried so many different meds that I’ve lost track of them all. I’ve still lost a lot due to this illness. A lost career in the Air Force, a ch 7 bankruptcy and a foreclosure later I have just started to recover from the toll it has taken. Yet, I’m still no closer to a cause or even an effective treatment. The sad thing is, there are many more that are in a worse situation than I am.

    Treating people that are suffering from chronic pain as criminals is not the way to go about this. It seems that doctors and other medical professionals forget that we’re people, not numbers.