One Bloggers’ Reaction To An Attack On Pain Patients!

Hello Luvs,

I almost always start my posts this way because it gives my readers a good feeling right away. I have written several posts this week and have made a couple of video/letters and video blog posts. So many, that my “pen” is on fire and so is my inspiration taking off. I am feeling both a protective and proactive instinct.  I’m a chronic pain patient and not an addict *(on the definition of an addict is :  to devote or surrender (oneself) to something habitually or obsessively) . I take only what medications are prescribed to me by my Pain Management physician. To clarify the difference I will explain to you what an addict is/does and what a person with chronic pain does. The majority of chronic pain patients take their  prescription Opioids responsibly (as prescribed by their legitimate pain management physician).  An addict has thoughts about their medications/drugs constantly and overwhelmingly. They cannot function because they’re thinking about their next dose all day long. If you want the truth, just about all chronic pain patients, myself included, don’t want to be on the medications that we are on. If you just take a moment to ask them, I’ll bet they will tell you so.

One investigative reporter for Salem News, has written a couple of mean-spirited and hurtful articles recently.  The article this week, called “The Word is Credibility-Not Stigma-in the Prescription Opioid/Heroin Epidemic, just hit a nerve with me. It upset me because she puts down the responsible chronic pain patients and lumps us together in the same category or group as “Heroin addicts”. She writes about the deaths of people who have overdosed.  But how many of those deaths occurred in people who took only their prescribed dosage of pain medications? In an article in the Pain News Network, in January 2016,(“How the CDC Misclassifies Opioid Overdoses”,by Denise Molohon, a guest columnist) the writer states that The CDC even admits to giving out “skewed data”. The CDC has qualifiers for their “Morbidity and Mortality Weekly report” or “MMWR”. She researched the information that she was given and found that these qualifiers are as follows:

  • “Approximately one fifth of drug overdose deaths lack information on the specific drugs involved. Some of these deaths might involve opioids.”
  •  “Heroin deaths might be misclassified as morphine because morphine and heroin are metabolized similarly, which might result in an underreporting of heroin overdose deaths.”

Ms. Molohon, also writes that “if heroin deaths are being misclassified as morphine, which results in the “underreporting” of heroin overdose deaths, then wouldn’t the opposite also hold true? That there is “over-reporting” of morphine deaths, which are then misclassified as prescription Opioid deaths?

Also, according to the DEA’s National Heroin Threat Assessment Summary, the overwhelming number of fentanyl overdose deaths are not attributable to pharmaceutical fentanyl but rather illicit fentanyl (*Pain News Network, January 2016, “How the CDC Misclassifies Opioid Overdoses”). So you see, many deaths that are being called “overdose deaths by Opioids” are mistaken. Believe me, I’ve done my work. I have checked and re-checked my sources and the information that I put forth. But some reporters or groups who have some kind of agenda, money to gain or an ax to grind; come forward with all kinds of bias. Ms. Moholond also states that “to lump all opioids together as “prescription” opioids or as “pain relievers” shows a highly dangerous bias, an unwillingness to address the soaring number of heroin and illicit fentanyl overdoses, and a lack of competence in taking a responsible leadership role.

Then there is an Investigative Reporter, who accuses the U.S. Pain Foundation of “catering to the needs of the chronic pain patient”. In my opinion, there’s a huge difference between the word “catering” and the word “caring”.  Just this past week she quotes the founder & CEO of U.S. Pain Foundation; stating that he “encourages chronic pain patients to empower and educate those who should have done better research”.  She goes on to say to Paul, “Do you know what matters Mr. Gileno? It is that we are losing a generation of young people to the prescription Opioid epidemic”…then she again lumps us into the same category as drug addicts and abusers by then adding to the above statement …..”now leading to Heroin usage”. I wonder if she knows that only about “5% of People who are prescribed Opioid pain medications, go on to even become-addicted” (NPR-Nov 2015)?? The “legitimate” chronic pain patient takes medication only to be relieved of horrible chronic pain, nerve pain and the pain of such illnesses as CRPS plus many others.  We do not become “addicted” to our medications for pain. Our bodies may become tolerant or dependent, but we are not addicts. The majority of  pain patients do not become “Heroin addicts” and I’ve not heard of anyone in any of my support groups (approx. 1,000 people) or anyone that I’ve come in contact with who has become a Heroin addict after taking pain medication. That Investigative Reporter, then goes on to mock the Founder of the U.S. Pain Foundation, by saying “Stigma of the chronic pain patients? Give me a break”!!….. To her I say “No, Ma’am, Paul encourages us to not lie down, give up or be hopeless in our chronic pain illnesses. He does empower us and encourage us to do whatever it is that we can do and never more than that. Mr. Gileno does also tell us that we don’t have to be silent, that we have a voice that needs to be heard”! It is my opinion that we don’t need to be bullied because people think chronic pain patients are “weak”! On the contrary, we are about the strongest breed I’ve ever seen or heard!

The Investigative Reporter, or the writer of that article appears to be angry, upset, sad. But she is taking it out on the wrong people. She’s angry, upset & sad because of a personal loss. She discusses the signs of addiction but states that she was “unaware”  of the “signs” of someone close to her taking prescription Opioids. If a legitimate chronic pain patient is taking their medication responsibly, which the majority does; then there are no “signs”.  Our bodies are physically dependent, but we are not addicted. The major difference being that we don’t think overwhelmingly about the medications. We don’t count the minutes until the next dose. Some of us try to make it longer if possible. If you ask any of us, we will tell you that we DON’T want to take this medication. We hate taking it! The addicted ones will never say that. They will go to whatever extremes possible to get that drug into their bodies; even if that means getting on the streets! Because a reporter, writer or anyone for that matter, is angry at the world; that doesn’t give them the right to turn that anger into hatred and use it to  hurt other people! Again, in April of 2012, that same Investigative Reporter wrote for the National Pain Report. The title of that article was “YOU Messed With The Wrong Mom”. The title of that piece is vengeful sounding, let alone the fact that it is antagonistic with a threatening and bullying tone.

Many Chronic Pain Patients, including me, are sad and angry at the loss of our former lives due to chronic pain. Try to imagine fire-like, burning, stabbing pain in your feet, hands, knees & throughout your entire body day in and day out; 365/24/7.  I would not wish this on my worst enemy.  But we take our medication in order to live with some semblance of normalcy in life. The majority of Chronic Pain patients who take Opioids, share that information with their families to get the help and emotional support. If family members are unaware of the Opioid use of their close relative, or of someone close to them, then that information was “hidden” purposely from the family. That in itself can be a sign of “addiction”, unfortunately.

Desecrating different individuals, groups & foundations who are as kind and helpful as the U.S. Pain Foundation & others have been, is not the way to get things done or a way to get your ideas and thoughts out. No one forces people to put the pills into their mouth. It’s not the fault of the drug company either. They make the medication to help people with pain illnesses, to alleviate their pain. The medications are not meant to be taken in large doses or in combination with alcohol or illicit drugs. Nobody forces drug addicts to take their drugs. Because they have an illness of their own, why does that mean that the pain patient should be punished?  The U.S. Pain Foundation, along with RSDHOPE, RSDSA and several other groups that help people with horrible nerve pain, accept us for who we are, give us answers and show kindness. Paul Gileno doesn’t “encourage” us to take anything. He “empowers us” us to have a voice!  He encourages us to help each other and to help others. He just wants us to have the freedom to do what our physicians think is the right choice for us! The fact is that each individual is different.

People don’t die from Opioids alone, when taken in the proper manner. People die from Opioids when they are abusing or misusing them.  Web MD, states that “respiratory depression” is one of the signs of Opioid abuse, and this is how some people die when they take more than their prescribed amount. Secrecy is another sign that someone is hiding and doing something they probably should not be doing.  In an article called “Identifying signs of addiction”, Steven Gifford, LICDC, LPC, states: “Often, addicts and alcoholics are the last to know that they have a problem, because they cannot see the outward signs of addiction. They attempt to hide their use from loved ones…..”. I must say that as a Chronic pain patient, with the worst form of chronic pain known to mankind, called “CRPS or Complex Regional Pain Syndrome”; I take only the prescribed dosage of medications for me and my pain. I never take more and if I can get by on less, then that is what I do! I do everything that I can to encourage, rather than discourage individuals with chronic pain.

Anyone who hasn’t experienced it first hand or even as a caregiver, hasn’t any idea, even close to what it is like to be in such horrible pain. When you are finally given something to alleviate that pain somewhat (but never 100%), it is a relief. But then because of the people or groups who are working very hard to take our pain medications away, we become fearful each month.  We are afraid that one method that helps us to get out of bed each morning without writhing, crying and screaming out in horrible nerve pain; could be taken away at any moment. I feel that the people who do this are doing it for the wrong reasons. People need to be educated re: Opioids, instead of being afraid! There are some chronic pain patients, like me, for example; who are not candidates for other types of pain control. Such as the pain pump or the Spinal cord Stimulater (SCS). I also suffer from “Combined Immune Deficiency Disease”.  I’m not able to have those pain control aids, due to possible infection which could lead to paralysis. I can’t have certain other methods of pain control because sometimes just a slightest “touch” hurts my skin, due to the “systemic, full body Complex Regional Pain Syndrome or CRPS” that I suffer with.

In one of the articles that I read, a first grade boy was put on the stand in a courtroom to speak out against Opioids. Little children are taught such things as “hate” against someone or a group of people. I read in an article from Star-Ledger, by Bob Braun in July 2007, that one woman’s grandson told the courtroom that he “Came to see the bad guys get what they deserve” (he was speaking of the drug manufacturers of Oxycontin, an Opioid pain medication)! The little boy mentioned that his mother slept often & missed picking him up from school. Well, I’m sorry, but I can barely sleep because of my pain flares, even at night. I may nap, but I don’t ever remember a point where I would sleep all the time and miss my kids getting off the school bus. I can see how hurt and deep sorrow, could cloud anyone’s judgement. But blame and anger are being displaced deep within the chaos of people’s losses.

There are some very wonderful people along with caring groups, foundations, non-profits, (*some that are run by Chronic pain patients) who help so many persons.  I have noticed that they are being put down by reporters and hosts in their articles and talk shows. The only thing that these foundations, non-profits and groups are guilty of, is helping to give the chronic pain patient a voice. They help to give us a place to go with questions.  They share a venue to educate others in pain on how to best help themselves. The U.S. Pain Foundation is all of this and more. In fact, let me tell you exactly what they do for us and who they are:

  • An organization created by people with pain for people with pain, U.S. Pain recognizes and validates the challenges 100 million Americans endure every day. We therefore strive to be the leading source of support for care champions and those living with pain conditions.
  • U.S. Pain is here to offer hope, present information, share stories and honor those whose lives have been affected by pain.

When someone takes up a Cause out of anger or grief, and that Cause hurts other people, (*especially people who are in so much physical pain already); then how is that helping? Taking a medication away that helps so many pain patients to just put their feet on the ground in the morning; seems cruel. Wronging someone because you have felt “wronged”, that is just horrible. Two wrongs don’t make a right! Children who have suffered loss, shouldn’t be taught to hate or to “get even”. They need to be cuddled, loved and sheltered from the world of intolerance.