Chronic Pain Patient To Be Heard? Take the Survey!

Chronic Pain Patient To Be Heard? Take the Survey!

By Ed Coghlan

The U.S. Pain Foundation is the largest pain advocacy group in the United States. It has been sharpening its message in recent weeks on the importance of the U.S. pain community coming together in a common voice, as evidenced by this op-ed by their President that the National Pain Report published last week.

In an email communication to the thousands of members and associates they boast, they have asked the pain community to complete a survey that has the goal of uniting the pain community to advocate for improved access to quality health care.

They asked the National Pain Report if we would promote the survey, which we agreed to do because it is our belief that hearing the voice of the chronic pain patient is critical.

Here’s a link to the survey, which we recommend that you take. If real change is going to occur, it has to start somewhere. The voice of the chronic pain patients and their families/loved ones seems like a good place to start.

As the U.S. Pain Foundation said in the email: “We have been working to unite the pain community to advocate for further pain research, fair access to all forms of care (including integrative and complementary therapies) and legislation that fulfills the needs of people with pain.

While U.S. Pain continues to educate the general public and healthcare professionals to better understand chronic pain as a disease, it is imperative to discover how we, as pain warriors, can mobilize our efforts to make positive change at the federal level.”

The organization addressed the major issue in chronic pain treatment today – the federal agency emphasis on addressing the abuse and misuse of pain medication.

U.S. Pain is collecting data to gain a sense of how much information is known about the CDC Guidelines for Prescribing Opioids for Chronic Pain, FDA Opioids Action Plan and the National Pain Strategy (NPS).

“To move the pain community forward, toward a nation which can support and acknowledge chronic pain as a disease and addiction as a disease, pain patients, caregivers and providers are needed to weigh in on the questions below,” they said.

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Authored by: Ed Coghlan

There are 10 comments for this article
  1. Mary at 7:28 pm

    People need to understand that an addit isn’t a person who wants the medication to get high, they need it to help control their chronic pain to function partly in their day. Without my medication in a 24 hour day, I can not function. I can’t not shower, I can’t sleep, I can’t wash a dish, do laundry, you name it, I just can not do it. But with my medication of 4-5 pills a day every 4 hours, I can do most of the things to a degree. At least shower, believe me without my medication I’m a mess.
    I like most chronic pain suffers would not do anything to jeopardize our continuation of medication. Sometime we do a too little much and feel the need for another round of our meds. Point being there we are 1 short at end of month. If it happens over the 30 day time frame we are in dire streights.
    I like everyone else who write on these petitions, blogs, or to kinda feel hopeful, we are all in the same state of never having enough medication for our chronic pain. Remember the medication just takes the edge off, never a 100% take away. NEVER!
    I have no idea what the government was thinking about hurting the chronic pain suffers more than ever by condemning us to sheer misery to kill our selves when we runout of medication. When the hospitals, doctors, emergency rooms or anyone else will help up unless we want to start using street drugs like herion? Which is one of the worse things the government could do to the chronically ill patients of the United States.
    There are over 100 million chronic patients in our wonderful country of ours. I want to know what the CDC, DEA, pharmacy, doctors are going to do to undo this most insane idea of hurting chronic pain patients more than they are hurting now.
    Did you know the government gives clean needles, a place to inject off the streets to accommodate the real junkies of herion users, whereas the poor chronically ill pain patient has no recourse for any help for the government. WHAT IS WRONG PICTURE?
    We as victims were injured at no fault of our own, didn’t have a choice to become a chronic pain patient, whereas the junkie did and does
    !

  2. HAZZY at 3:23 pm

    MEDICAL MARAJUANA TO ME IS A JOKE, IT’S IN YOUR HEAD THAT YOUR PAIN IS GONE DUE TO THE MARAJUANA, I SMOKED IT AND I DIDNT FEEL ANY DIFFERENT, THAN SMOKEING REGULAR MARAJUANA…………IF YOU ARE IN CHRONIC PAIN, MARAJUANA ISNT THE ANSWER !!!! IN OTHER WORDS PATIENTS SUFFERING WITH CHRONIC PAIN NEED TO BE ON THERE PAIN MEDS, THATS WHY THEY MAKE IT. I DONT ABUSE IT, AND IT IS LOCKED UP DUE TO ME HAVEING A THEFT AND I WAS LEFT HIGH AND DRY SUFFERING FROM WITHDRAWALS WHICH ARE NOT FUN !!!!

  3. Kathryn Benedic at 9:49 am

    Petitions are wonderful if they make a difference to the people that make the decisions. But often the ones receiving the ppetitions are the same ones that propose the bills that change the laws. Sadly, they don’t want to be convinced they are wrong and petitions are worthless and we are still seen as ABUSERS THAT WANT OUR PILLS FOR THE WRONG REASONS! It is hard to change the minds of those convinced that there is no such thing as a “chronic Pain” sufferer. According to those making the laws there are only those in “acute pain” that will go,awaymafter one trip to the doctor or ER.

    How sad it is that “the powers that be” can’t see beyond their own nose and look beyond the world around them. It is really not that they can’t, bu rather because they won’t. In our country it is easier to believe “just say no” than to educate themselves about the problem before judging others. Low imformation Sheeple will follow anyone if it is the correct political belief of the day. The mantra changes from time to time as the political wind blows. Rather than wise up, Sheeple will usually, dumb down. In my opinion, it will remain the same until something shocking beyond their belief happens to them or someone they love,and chronic pain effects their own lives, only then will they change their minds at the drop of a dime, and become a follower of us too.

    So, please don’t hold your breath that our petition will be the only thing that will change the minds of small,minded Sheeple, or the ones proposing these laws. Once the bills/or proposals dare out there, it is hard to do much to,change them. That is the reason we are called warriors, because a warrior never gives up.

  4. Brenda at 3:04 am

    After nearly 3years and over100 lb weight gain from sitting at home because I Could not go anywhere without being in pain from carrying my oxygen with my bad back , fighting with 2 different insurance companies I had to get into my own personal retirement account to buy a portable concentrator that I could leave the house with. Yes, I am in so much pain that I cannot shop without one of those carts without being totally horrendous to people in the store. I take pain killers and they don’t take care of the pain I have. But at least I can get away from home for more than 3 or 4 hours at a time. Insurance companies do not care about your needs. But we get penalized for getting into our retirement accts before a certain age when we need it for medical reasons. Why is that ?

  5. Tim Mason at 7:07 pm

    I took the survey and signed the petition too.
    In reality, a young doctor may know about pain, understand what he/she has read in books and have had some aches and pains in their lives. Chronic pain and chronic bone and joint pain must be experienced to have a working knowledge of what it is. Without this knowledge pain for them remains an enigma.
    Someone, perhaps here, posted the following and it bears repeating.
    “Understanding chronic pain and but never experiencing it and saying you fully understand it is like an embalmer saying he knows what it is like to be dead because he works in a funeral home”.

  6. Dawn Gonzalez at 5:59 pm

    Opioids and marijuana and other pain relieving plants and substances have been used for THOUSANDS of YEARS. Only within the last century were they vilified and prohibited. It’s absolutely inhumane to not allow doctors to treat their patients since these things are now unavailable thanks to the failed and bogus “war on drugs”. This is a major human rights violation for starters. It’s against the Geneva Convention and considered TORTURE to not treat pain!! This is scary precedence they’re trying to get away with setting here.. And it MUST not be allowed!!

  7. Kim Miller at 11:05 am

    Dave

    Since you know so much about me, how I feel, and my total disregard for what others think and feel, then you surely know that I am also a tireless pain advocate that has worked relentlessly to try to make a difference in the plight of chronic pain patients. Your constant barrage of negativity and unfounded criticism of how I “feel”, is not only unnecessary, but counterintuitive to our efforts as a community to accomplish something positive.

    Per your comment on my comment, “But its clear since youre happy with the NPS- it doesn’t matter if a lot of other people are not happy about it- at least from your point of view- its just their tough luck”, it would appear I’m one heartless individual who thinks only of myself.

    I submit that the mere fact you have systematically commented on 6 other comments, often using quotes from previous articles and comments you’ve written, that you have a sense that there is one point of view in this world and it’s yours.

    Instead of finding a way to insult and degrade others who are advocating for the rights of chronic pain patients to receive adequate pain treatment, I suggest we try to find a way to work together and do something positive to change our outlook for the future. One way is directing people to join in a unique petition opportunity at:

    https://m.facebook.com/groups/painisreal/

    Though, of course, I’m always open to anyone’s ideas. There just appears to be a shortage of ideas, but no shortage of criticism for the ideas that do get presented.

    Kim Miller
    Kim Miller
    US Pain Foundation Ambassador Advocate,
    Kentuckiana Fibromyalgia Support Group Advocacy Director

  8. Mary at 9:57 am

    No human being should have to live in chronic pain in the United States. We treat our enemies, our pets better than we treat chronic pain suffers.

    We have rights so we can live without the government making a blanket statement to cover everyone who takes opioids. Over 100,000 people live in chronic pain.
    They even give herion addicts clean needles, all other items to shoot up their herion. I was shocked, when you have or had a thriving person prior to injury, chronic pain suffer functioning at a job, housewife, mother, wife, partner, family living a patial chronic pain free life before this government invasion on our medication between patient and caregiver.

    No one know what it is like to be in chronic pain every second of every day, unless you experience it for yourself. God help you if you have to, because when you have no help from a professional dr. You will want to kill yourself, if you have to live in chronic pain and there is no relief.

    I could have partial pain that was tolerably if I had my muscle relaxers and opioids pain medications. I’ve been taking them for 28 years due to a sideway whiplash by a chiropractors hands. Blew disk out of spine landed in nerve root. To find the problem it took 22 months and 28 dr later to want to cut open my shoulder. One Dr. Ask for MRI, no one ever had a neck MRI. There it was side way whip last c5-c6. After going in surgery remove as much as surgeon could remove, the disk turned to a mass of jello type substance. That massive gunk of jello sypusbance had done horrible nerve damage. That chunk of disk did massive, iereversable damage on muscles, nerves in neck shoulder,face, spine, so much more. 4-5 meds a day depending how bad the pain was that day. Would help me function to a degree.

    I would rather have quality of live than quantity of life. Discussed with surgeon many years ago after we couldn’t fix me anymore, except medications.
    I could function with a few small things with my medication, now without my regular dosage, I am a mess, can’t function, can’t take shower, can’t go to grocery and can’t sleep, among many other things. I can’t live and function in society. Where with my regular medications I could, to a degree.
    These people who don’t know what it’s like to be in chronic pain 24/7 are making these crazy ruling about taking what little lives us chronic pain patient away from us.
    Please help chronic pain suffers get back to leading somewhat of a normal life the best way we can. It’s unhumane and against laws to make us suffer. When we can’t otherwise!
    I would never sell my medication to anyone for I need every pill I take for chronic pain relief. Please help us! I’m 63 and lucky if I have 10 more years left taking my meds, I’m ok with that, but don’t make me suffer for the rest of my life. I’ve suffered since being injured at age 34! Thank you, please sign petitions! Mary

  9. Cynthia at 9:14 pm

    Thanks Ed….did the survey and forwarded to many…

  10. Maureen at 8:32 am

    Thank You for posting the survey NPR! I’ve completed it via the US Pain Foundation. I just wanted to say that I’m thrilled to see that things such as this are now taking place.I feel more empowered now knowing that collectively we are doing our best to fight back and bring a more extreme awareness to those who are making wrongful decisions in controlling the lives of us who greatly suffer every moment of our life in pain.
    Keep positive Pain Warriors!!