Chronic Pain In A World of Intolerance

Chronic Pain In A World of Intolerance

By Suzanne Stewart

Being a Health advocate/activist” for people like myself, who live with chronic pain; is becoming more of a challenge.  I’m feeling both proactive and protective.  I want to help change the way society and the government thinks about chronic pain and the persons living with the daily struggles from it. I also want to help put a more positive spin on something that is very difficult to stay positive about.  While Governor Chris Christie is becoming the “drug Czar”; he is talking about changing  many lives in a negative way.  Our President is putting persons in charge of what he has only heard of as “the Opioid Epidemic”.  He listens to what others tell him and he reads about statistics or numbers of deaths; not the number of “people who have died”.   Those are people who have passed away not numbers on a screen. These people each have or had their own story to tell and nobody was listening.  I’m trying to get someone to listen to us.   As a chronic pain patient myself, I can say that we feel like the rules of the “game” are being changed, without talking to any of the real players.  When you only are only told one side of a story over and over again; you are not going to get the whole truth or the entire story.  When the President or the Governor talks with people who have lost someone that they love due to a “drug overdose”; then that is the way the story is going to spin.  There are journalists who have lost someone they love, to a drug overdose and they are writing over and over again about the “horrors of the Opioid epidemic”. There are reporters who are speaking against Opioids on the Television and producers making short films about “The Oxycontin Express”.  I can only say that if I was misinformed and heartbroken, that I might do the same thing. But I’m not misinformed and I honestly feel that if I lost someone to an overdose, I would still try not to hurt anyone else while I was in mourning. I wouldn’t try to “punish the whole class for the behavior of one”. I would not want to go on a mission to try and “save everyone else” (while hurting so many and possibly not even knowing) to make myself feel better.

Suzanne Stewart

I turned on the TV the other night and one of the news stations had a week long special about “the Opioid Epidemic”.  I was yelling at the screen and telling them that they hadn’t a clue! The person they had on as a guest, was someone who had broken his leg, had surgery and had become an Opioid addict!  That is not the same thing as someone living with daily chronic pain and knowing that  life will always be this way.  Persons like me who live with chronic pain day in and day out, do need to try physical therapy, and other first choice treatments available.  We realize that we need to give different options a chance.  But when a patient with several high pain illnesses has tried many alternatives; and is not a candidate for other options; then they/we need reassurance.  We need to know that the medications that many of us have taken for several years and that give some semblance of a life; are going to remain available and nobody will rip the rug out from under us!

I am in a group of people called “chronic pain patients”. We are not drug addicts!  The definition of an addict, according to the Dictionary (on Definitions.com) is this:  “to devote or surrender oneself to something habitually or obsessively”.  I can speak for myself and the hundreds of chronic pain support group members that I mentor.  We  take only the medications prescribed to us by our physicians and/or Pain Management Physicians.  To clarify, I will explain further the difference between the addict and the pain patient.  The majority of chronic pain patients take their prescription pain medications (or Opioids) responsibly.  The medications for pain are taken per the instructions of a legitimate pain management physician or well known doctor.  Long time pain patients continue on a steady dose of pain medications and do not crave more than that. In fact, the truth is that just about all chronic pain patients, myself included, don’t want to be on the medications that we are taking.  On the other hand, an addict has thoughts about their medications/drugs constantly and overwhelmingly.  They can’t function because they’re thinking about their next dose all day long.

I read an article awhile back called “The Word is Credibility-Not Stigma-in the Prescription Opioid/Heroin Epidemic”; that really hit a nerve with me.  It upset me because the writer puts down the responsible chronic pain patients and “lumps” us together in the same category as heroin addicts.  She wrote about the deaths of people who have overdosed.  But how many of those deaths were people who took only their prescribed dosage of pain medications?  I read another article in which the writer (*Denise Molohon, a guest columnist for PNN January-2016)) stated that “the CDC even admits to giving out skewed data”.  The CDC has qualifiers for their “Morbidity and Mortality weekly report.  She researched the information that she was given and found that those qualifiers are as follows:

  • “approximately 1/5 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”

The writer also stated that “if heroin deaths are being misclassified as morphine, which results in the “underreporting” of heroin overdose deaths, then wouldn’t the opposite also be true? That there is “over-reporting” of morphine deaths, which are then misclassified as prescription Opioid deaths?”  Also, when we are reading or hearing reports about fentanyl overdose deaths; most of those deaths are from street drugs fentanyl and not the prescription pain medication.  We just can’t lump medications and street drugs together, that is irresponsible.  Only “5% of people who are prescribed Opioid pain medications, go on to become addicted”,  according to our own National Pain Report in November 2015.  As a legitimate chronic pain patient, I can verify that we only take pain medications to be relieved of horrible daily chronic pain, nerve pain and the pain from such illnesses as CRPS plus many others.  We don’t become “addicted” to our prescription pain medications.  Our bodies may become tolerant or “dependent”, but  we are not addicts.

There are support systems such as the U.S. Pain Foundation and RSDSA who encourage the chronic pain patients to not be hopeless.  They empower us and encourage us to do whatever we can do but never more than that.  We have a voice and it needs to be heard.  Anyone who hasn’t experienced chronic pain first hand or even as a caregiver, hasn’t any idea what it’s like to be in horrible pain 24/7/365.  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 that goes by.  We fear that one method that helps us to get out of bed each morning without writhing in pain, crying and screaming out in horrible nerve pain; could be taken away at any moment.

I feel that people who are doing this are doing it for the wrong reasons.  People need to be educated regarding Opioids instead of being afraid of them.  There are some chronic pain patients who are not candidates for other types of pain control, such as the pain pump or the spinal cord stimulater (SCS).  Taking a medication away that helps so many pain patients to just put their feet on the ground in the morning, seems cruel.  Hurting someone because you have felt “wronged”, is just terrible. There needs to be some kind of shelter from the world of intolerance.

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S.Pain Foundation. 

For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 39 comments for this article
  1. Maureen at 12:13 pm

    Right on! Well said Heather! Keep strong and vigilant!

  2. Denise Bault at 5:22 am

    Great response, Heather! WE MUST ALL SPEAK UP!

  3. Rita KIMBEL at 3:41 pm

    You are so right in everything you said, we need to stick together and not give in. We need a popular person to represent us someone well known, respected and maybe educated in pain and how horrible it is to live like this. Any one know if someone to take this on for us? Our calls are unheard it seems months are going by and we still have no word if the CDC has decided to get involved. I’m so tired, and feeling defeated, this shouldn’t be in the great USA.

  4. Heather at 10:17 am

    Thanks! Great post and you are absolutely correct. I am a huge advocate and continuously write to the CDC, DEA, FDA, White House, and most importantly local government officials. This is what everyone needs to do. We are REAL PATIENTS not ADDICTS and we deserve fair treatment and not to be treated like dirt and inhumanly, neglectful, barbaric, and abusive as most ER doctors and staff do. I refuse to go back to the ER. Also I’ve written and will continue to do so until something is done about this whole ‘OPIOID EPIDEMIC” that they need to reclassify the overdoses into a separate category. The majority of all of them are from Heroin and cocaine with fentanyl, or those whose are using recreationally on the street not from PAIN PATIENTS. WAKE UP AMERICA. LISTEN TO THE REAL PATIENTS WHO SUFFER 24/7/365….. Not the ADDICTS. Yes it’s a problem and a huge one but not from US. The CDC even said they had no scientific proof of the overdoses being from those who are prescribed opiods for pain. They just LISTEN to ER drs and local officials and jump the gun affecting millions of innocent lives. And for this I say we have a voice so let it be heard, loud and clear, Stand Tall, Speak Up, Write your officials and federal agencies repeatedly, and most of all BE YOUR OWN ADVOCATES!!! To many Drs are afraid of losing their licenses and this should never be as it has always been to treat the patient, LISTEN to the patient, and be there to help the PATIENTS, but nope some Drs are scared to stand up as well. It all has to change. It just needs to be reclassified and let Drs be Drs and overdose EPIDEMIC be placed somewhere else. We or most of us have exhausted all alternative measures and meds are all we are left with unfortunately but we are under contracts and have to take drug test and pill counts, use same pharmacies etc. So we are being monitored. Our Drs know us and our conditions, diseases and disorders most of them have no cures and limited meds to help. No we dont like to take them but if it will help me get out of bed and move a little around my house then so be it. I’m only taking what I was ordered. I’m not high, I’m not groggy, I’m not out of it, you know why? Because I’m a real pain patient and med is effective. See that’s the difference in a real pain patient and an addict. And addict would be taking it And be high and taking more than they should. We don’t we are responsible. We just want a little quality of life. I’ve lost my career as a nurse due to my multiple autoimmune and immune deficient disorders that have no cures. I’ve been unable to work for over 2 years now and it tears me up and I tell you I never once refused giving a patient pain meds, I didnt care if they were laughing. If they asked they got it. We all learn how to cope with pain in different ways after having it for so many years and mostly its called a front. A lot of people swe us looking fine on the outside but don’t know what you are battling on the inside so you just fake a Smile!!! Invisble disorders need more awareness as well to help others understand how we fight each day using spoon by spoon until we run out…… So treat everyone with kindness except your local and federal agencies…. Let show them who we are and what we are about. LET YOUR VOICES BE HEARD!!! And if we don’t and they don’t act quickly we are going to have a bigger problem than we already have and that is suicide amongst the pain community. We lost 6 people in about 5 months time all under 50 due to lack of care or none at all. This should never ever happen….it is rising fast so we have to make the change. Speak up!!!

  5. Cynthia Koch at 10:53 am

    I hope all of you who are writing these blogs are also writing to all of your representatives in Congress, the President , your Governor, State Medical Board and anyone else you can think of with your stories. Something I have always done is to request my medical records from every doctor that I see, (especially the doctor’s office notes). You have the right to add your own information and correct any wrong or left out information. You have the right to do so through the Federal Privacy Act.

  6. Debra E McDonald at 3:32 pm

    I support you 100÷! Just tell us how we can help and I’ll help as much as I can! Dem9515@yahoo.com. I now live back in Texas after 21 years in St. Louis. Like most of us here, I suffer from extensive neuropathy in my feet, legs and hands. I also have arthritis in my shoulder, hands, knees and hips. My back? It is probably my worse pain and knows no boundaries. Neck degenerative disc disease, mid back pain from a spinal shot in December 2016. My lower back was my initial contact with pain meds 25 years ago. I had degenerative discs and multi level bulging discs. Now the cherry on top is spinal stenosis. But this pain report has to at least have our experiences and pain issues heard. It makes me furious that some yahoo in DC started on a witch hunt that has made us all criminals (at least that is the way we are treated). Sadly I’ve had a friend who was cold turkeyed by his doctor who took his own life. He was one of the nicest men I have ever known and his death was the true crime. I’ve had another friend who has had to explore other sources for pain relief. She advised me when we moved back and it took 3 months to see a primary so I could be referred. She told me to take anything anxiety that I had (paxil) and Gabapentin. If the pain wasn’t at least reduced she suggested Kratom that has to be ordered from smoke shops and no one knew if it was pure or valid. And with all my allergies I just couldnt take that chance. Suzanne you are so eloquent and you speak from experience. PLEASE don’t walk away from this. I know many people wanted to help when I suggested a class action suit. But come on, while money is great, what we really need is our lives back. It took 10 years of trying different drugs, physical therapy, doctors appointments. Only now Congress and Senate have taken away my ability to dress myself, do laundry, cook and care for my 3 year old grandson. PLEASE, please help all of us get our lives back!

  7. Kathy C at 7:32 am

    Jim, I wonder how many of us are out there. There seems to be a pattern with these Neck Surgeries. The most glaring thing of all is that there is no research as to their effectiveness, or even follow up. My Pain Physician told be that there is a 50% Failure Rate at 5 years, yet at 9 years, post surgery, the latest Surgical Consult, the Surgeon refused to acknowledge i even had the implant. Any attempt I have made to get an “Surgical Opinion” on it, has been a run around. At this Point I doubt there is any solution except enduring the pain and limitations. No Physician in this area will comment on another work, or even acknowledge that it occurred. I suspect they have gag orders and other constraints to avoid “liability” and maintain their “Business.”
    I know other who have endured the same kind of postponement and denial. The Industry found they can avoid scrutiny by not doing Research, So we have no way of knowing how many people have been through this. The stress that the implants put on the surrounding Discs, are pretty clear, on my imaging, yet no Physician, other than my Pain Management Doctor, is allowed to mention the surgery. I had the same experience after my Lumbar Laminectomy, and Discectomy.
    The Industry has found so many clever ways to avoid any kind of Accountability. Even the Biiling Codes and Medical Records are done to avoid mentioning the previous Surgery. They seem to be under no obligation to even mention anything. It is as if ti never happened. I suppose the Industry decide that we are all “Inconvenient.” It is now the Post Fact Era. Try as might the Surgeon would not mention, discuss or acknowledge the previous Surgery. He acted as if i was just here for a chat. as if I had just woken up with a little discomfort and wanted to talk. They are under constraints to operate in the Interest of the HMO they work for. The Industry changed the language, the items, that go in the record, and the Billing Codes, to reflect this.
    if only we had any research, but it will be directed at finding more way to avoid accountability, even looking for our personal reasons to report pain. They have Psychologist studying that, instead of the Facts. The Facts are inconvenient and unprofitable.

  8. James "Jim" Gibson at 1:54 pm

    I know exactly how you feel Lisa. I had to go over 2 years after my botched neck surgery before I could just be seen by surgeon. After 2 visits he said he felt uncomfortable going behind another surgeon. Got same results from 3 others. And each one ordered an MRI. Which brings me to PM. I Mentioned in an earlier post about one neuro sending me to PM. Injections raising my sugar levels but had to have them to stay in the clinic. Then the clinic stopped writing meds. Yes I am worried that they will come down on my primary physician because he is not a pain mgmt specialist. He does it for me to keep my body moving, which is very important for a diabetic. If anything happens and he has to stop, I fear what will happen.I lived in severe pain before for a long period. I can’t live like that again. I just turned 60. I would like to see 61 with controlled pain

    Thanks Lisa for your post.

  9. Dawn W. at 10:14 am

    This entire controversy is hurting so many legitimate chronic pain sufferers! It makes those of us who follow the rules, scared to death that we will be the next person who loses a doctor suddenly and is alone to suffer through withdrawal.

    My own mother, who is 80 yrs old and a chronic pain patient being treated with opioids for over 15 yrs, recently was told her doctor quit suddenly without any warning to his chronic pain patients! She is now going to go through withdrawal because she cannot find a doctor to take over her care in time to write her a new prescription before she runs out. Her only recourse was to get an appt with a pain specialist, however, she cannot get in soon enough so she will be suffering soon. I cannot believe this has happened to her, someone who follows the rules and has always done so. I am so frightened for her because she may not be able to handle the stress and sickness of withdrawal! She is ill with kidney disease on top of it. What happens to her the elderly patients who have to suffer bc of a doctor that quits like this? None of the other doctors in that particular clinic will take on the patients who are taking opioids. Unbelievable the predicament we are faced with when our doctor quits.

    What about the hypocritical oath doctors are supposed to adhere to, “to do no harm” to their patients? I am so upset bc I too am a chronic pain sufferer and every day I worry this same thing could happen to me at any time. Where are the advocates for the millions of chronic pain sufferers? Why is no one listening to us? We are the majority!

    It’s amazing to me that a legal drug like alcohol, which cause way more problems of addiction and death is “acceptable”, but not legal prescription opioids.

    There has to be a reason they are going after opioid users and that stem from the almighty dollar. We have to connect the dots like another commenter mentioned above. It’s about money. It always is.

  10. Lisa T Osborne at 8:09 pm

    One more thing. Some thoughts on the so-called Opioid Epidemic:

    Drugs are a billion dollar business and I don’t mean for dealers and users. Big Pharma has a lot of money tied up in name brand narcotics whose patents they continually renew. They recently fought to keep Dilaudid (I think it was) under patent in court. They won and their competition had to recall their generics that were much cheaper. They make a lot of money off of Narcan, the drug for overdoses and they corner the market. The drug costs $4,500 for 2 doses. They also fund their own drug research and pay a great deal of money to lobbyists in Washington DC and to influence the FDA.

    Big Pharma is terrified of medical marijuana. Currently only 2 places are allowed to study it and they are allowed to buy their weed from one supplier whose product is vastly inferior to what can be purchased in places where it is legal. Big Pharma knows that medical marijuana shows promise as an addiction withdrawal medication and as a safer alternative to opioids. You can bet that until they can find a way to own the market, they will be paying to sabotage medical marijuana.

    Chemical Dependency Treatment is another area that is big business. “Chemical Dependency Professional” is one of the fastest growing careers in America. Treatment costs thousands of dollars and is covered by virtually all insurance, including Medicaid. With an alleged 40%-60% relapse rate, they make millions. Connected to treatment facilities are case management, therapy, housing programs, employment training, and so much more—I know, because that was my field! Trust me that it isn’t the employees making the big bucks. Most of us max out at around $47,000/year with a masters degree, if we’re lucky—few benefits included.

    The DEA has operated since the Reagan years with very little oversight. They are a liitle military all their own and what they ask for, they get. Our government has pumped billions of dollars into the war on drugs but we are still losing and no one really is accountable for that money.

    A lot of the legislation being driven in places like Washington State, which has some of the most restrictive pain medication laws in the nation, are being written by several lawmakers who all have connections to the treatment industries.

    All of the studies about the opioid epidemic are by the same 4 or 5 organizations quoting the same studies, some of which have some questionable research. For example, it is impossible to keep track of overdose (OD) deaths across the US. Different states use different criteria to classify those deaths, and some keep track by county, others by state. Often agencies are short staffed, so deaths are not investigated. All ODs are lumped together, but consider this:

    • A homeless, mentally ill heroin addict uses heroin cut with fentyl and dies of an OD.
    • A rural pain patient is being given methadone for pain but the doctor does not keep track of the build up of methadone in her system and she dies of an OD. *see footnote.
    • A middle age mother of three children is not getting adequate pain management and takes too many prescription Oxycodone, and dies from an accidental OD.
    • A famous musician collapses outside a nightclub and dies from an OD. Toxicology tests show that he had four different opiates, from four different doctors, as well as cocaine and alcohol in his system when he died.
    These are all 4 overdoses but they have completely different causes and solutions, yet they will all be counted the same in the “Opioid epidemic”. One was doctor error, one was patient (and one might argue, doctor) error, and 2 actually were due to illegal drug use. In fact, when drug companies changed the formula of Morphine to make it harder to crush and dissolve in order to inject, abuse of Morphine decreased—and there was a corresponding increase in heroin abuse.

    We are not solving the problem. We are misrepresenting it, scaring away doctors, thereby creating a shortage of medical personnel who will treat legitimate pain, persecuting pain patients who follow the rules, and perpetuating a crisis.

    *In 2006, the peak year for methadone deaths in Washington state and the rest of the country, the drug was involved in 55 percent of all opiate related deaths in the state. Sixty-three percent of those were traced to a recent prescription for the drug as a pain medication. In 2013, methadone was involved in only 26 percent of all opiate deaths, and of those, only 38 percent were tied to a recent prescription, according to the Washington State Health Care Authority. The majority of these deaths are disproportionately low-income Medicaid patients. (CNN).

  11. Lisa T Osborne at 7:57 pm

    Hi Suzanne,
    As always, a fabulous and insightful piece!
    I have been in pain since 1983 and on pain meds since 1998. I went on SSDI in 2014 and on Medicaid last summer, which resulted in experiencing drug withdrawal 2x times in 3 months. The first time was doctor abandonment and the second was a new doctor who made an error and whose office would not facilitate discussion with him (state medical is not like private insurance!).
    I remember when I signed my first pain contact, I promised not to hoard my pain pills. I thought, why would I do that?? Ha!
    And after my first UA, I received a letter that read “Congratulations, your UA shows that you are taking your medications as agreed”. (!!)

    My current doctor could not understand why I seemed so prickly and defensive when I first met him. Since then, he has heard some of my experiences and now understands exactly why–and why I have white coat syndrome at the age of 52.
    I used to be employed in the social service/treatment field where I worked with young mothers in treatment for drug addiction. I know exactly how I am unlike them. I can see why doctors fear being manipulated. But having watched these young women med-seek, it is hard for me to understand how I can be lumped into the same group when I come in with a folder full of reports and films documenting my pain–I am not asking anyone to believe something I cannot prove and yet it makes no difference.
    Thus, I have become a “Pain Lurker”. I have put to work the research skills I learned in graduate school and I read studies. Then I lurk around the web to find articles at sites such as the recent ones at NPR and Salon. Then I add to the Comments section in an effort to educate and rebut misinformation about chronic pain consumers of opioids. I also Quora-like-Crazy and am working up to a blog. I don’t know if my lurkerhood changes any hearts and minds but at least I feel like I am doing something other than feeling frightened and helpless that someday I will have no pain control. After last summer, I know exactly what that feels like and I am not going through that a third time.

  12. James "Jim" Gibson at 9:46 am

    Thank you for another great post.
    Being a chronic pain sufferer myself, mostly due to a botched neck surgery, I relate to all those affected by these rules and laws that do not take us into consideration. In a three year period I had a dbl. bypass, three arthroscopic knee surgeries, a partial knee replacement, a total knee replacement, neck surgery(fusions with plates and screws), and a lumbar surgery(also fusions with with hardware). The neurosurgeon who did the neck surgery had a car accident and never returned, leaving me without additional care and no release to return to work. After finally finding a surgeon who would see me, he would not do a “fix”(straighten out the botched surgery and performing the additional surgery that the first neurosurgeon was supposed to do), he set me up with pain mgmt. Two and a half years into PM (in which I never flunked a UA) The PM clinic decides to cut all opiod meds for everyone. I was required to have a set of steroid injections every six months to stay in PM. Not only did they not work, but raised my blood sugar to dangerous levels. I told the PM dr. what was happening (high blood sugar and ER visits every time) and was told that it was a requirement and I would have to find another clinic if I could not handle the injections. He also told me that my body could handle the high blood sugar for 3 or 4 days. When I asked for a referral, I was told they don’t give referrals. I told my primary physician (internal medicine) about this and he told me to cut them loose and he would start giving me my pain meds. He doesn’t prescribe opiates often and does for only 2 other patients. He does this so I could do my excercise (walking, treadmill) and fish without having too much pain, keeping my blood sugar at better levels.
    If they add to the laws or rules here, I could be in a world of hurt again and go back into unnormalcy I was in for so long. At this point all I want is to live a halfway normal life. I realize I will never be able to do most of the things I used to do, but do not want to become a shut in like I was for way too long.
    These people making these guidelines, laws, and rules need to take us, the chronic pain sufferers, into consideration when they make these regulations. Us, who follow the rules, are regular people who just got a bad break or two in life. Don’t link us in with those who use the physicians for Rx to sell or just to get buzzed. Once again, you hit the nail on the head with your article. Thank you.

  13. spkavyo at 7:03 pm

    There are now 29 medical cannabis states, and eight that allow recreational cannabis. Having recently transitioned off of opioid medication at doctor’s insistence because I use cannabis, I can attest that cannabis can be a main or only pain medication for chronic pain. I have a spinal cord stimulation device and I find that cannabis works symbiotically with the stim unit to control my pain, especially since it is damage to spinal nerves that is the source of my pain. I am on SSDI, so I don’t have a work situation that would complicate my medication schedule. If you live in a legal state, or can move to one, you may find that you too can transition off of opioid medication to medical cannabis. It has been a positive change for me.

  14. Maureen at 9:47 am

    Hi Suzanne, Thank you for yet another awesome post!
    @Dr. Lawhern, Thank you for the link and for the incredible support you give to our community.
    @Bill, you are right…we need to find a famous person, who may or may not suffer along with us, to represent us before the government!
    @Candace, ‘you took the words right out of my mouth’ for sure! I too am a nurse whose life changed dramatically (after an auto accident, not my fault, while on the way to do wound care in a patient’s home) and have had 4 failed spine surgeries, muscle and nerve damage etc etc.
    After 34 yrs of nursing…I depressingly haven’t worked since.
    We should all live in a commune and take care of each other! LOL

    Suzanne (and all), I too saw a program on my local news the other night on the Opioid Epidemic (it seems that they are on their high horse once again, we need more reports on ‘us’!!).
    Anyway, the same station did a 3 mth news report 3 yrs ago on ‘our behalf’ (just as the witch hunt hatchet was coming down).
    On that report there was a CP woman who was defending our rights to have our meds etc. and was upset because her meds had been cut back.
    She went on and on and I was proud of her!
    The other night that same woman was on the ‘opposing’ Opioid report now saying that she has become addicted to her meds and admitted on TV that she is now getting additional meds from yet another doctor and that her initial doctor doesn’t know etc.
    WELL…I imagine he knows now LADY! You’re on local TV!
    She dug her own grave with that one! She made no sense and she will probably be discharged from both docs now.
    She wore a T-shirt with marijuana leaves all over it and then sat there on TV smoking it! It’s not legal in my area yet.
    No Pain Management doctors are on board with it ‘yet’ (I imagine they will lose patients/$$ once medical MJ is legal) and only 6 primary care docs in my county have applied for medical MJ licenses in prep for its’ legality.
    The shops are opening up and just waiting… meanwhile they are legally selling cannabis oil only.
    Bottom line is…this woman is clearly an addict and probably was when I was cheering her on 3 yrs ago.
    And people like her are just looking for the fame and NOT to properly represent the CP community, therefore they ruin it for us and our rights. Shame on her!
    We must all be very diligent in fighting back.
    Anyone know anyone in Hollywood? 🙂

  15. Dooney at 9:17 am

    Hi. Suzanne, I couldn’t find anything for you under the change website.

  16. Hayden at 8:35 am

    Chris Christie is the type personality that if he himself does not have a certain affliction or condition, then no one else can, or does either. I have watched his opinionated thoughts on “drug abuse” but, abuse and opioid medication are two, totally different issues. Christie will hopefully “hang” himself as he has no tolerance, no compassion and can not see over into his own neighbors “yard” as to the real situation. I am VERY disappointed that he was appointed to ANY position and how he has gotten as far as he has, is miraculous.

    Drug abuse and chronic pain opioid medication does not amount to an “opioid epidemic”. I personally knew a chronic pain patient, afflicted for years. His medication was terminated so he sought the necessary medication from his general M.D. He dis NOT get prescribed ANY medication. He visited the E.R. many times seeking pain relief but, when in non cancer pain any relief is just for a few hours at a time.. We all know that the pain level of a chronic pain sufferer is not consistently severe but, it can be severe one day or for a few hours and then it can be a little less severe however it never stops.My friend became desperate, felt hopeless, had no other agency or people to turn to so he went to our local “hospital”, found an empty bed and proceeded to occupy it, without checking in. of course the hospital staff and administrator would NOT have provided a bed “just for chronic pain”. he advised the nurse that he could not endure the pain any longer, please help me. he was admitted to the psychiatric ward for observation. He was there for three days, his paper work stated he did not NEED “psyche” help ( which he really did) and released. He was found a few days later after bring missed by his brother, at his own home, gun shot wound to his head and the note stating he could no linger take the pain and was rejected at ALL his attempts to seek help, “professionally”. It pisses me off because his obituary read that “he died suddenly” with no other information.

    This narrative IS and will continue to happen. Who is keeping the statistics? Better yet, who seems to care? I have been reduced from 100 milligrams of medication that I have been prescribed for the last five years, with zero negative affect on my body or incident. Before the last five years I was prescribed the same medication for 13 years at 160 milligrams per day. I chose to reduce my medication. There is no “high”, I just used the amount that was SUFFICIENT enough to provide pain relief so I could provided for my family through employment. I have been reduced to ONE 12 milligram opioid extended release oral medication, per day, as of April 19th 2017. What about the other 12 hours in a day? The physician stated that he could NOT prescribe more as the CDC guideline chart would not let him. He is in fear of license loss or suspension. This type thinking by the CDC”guideline” authors is assanine. LET THE DOCTORS PERFORM THEIR JOB!

    When I apply for SS disability due to the inability to find gainful employment due to not being able to just walk, will it be expedited because I can not work? My monthly recurring obligations for utilities will not stop. My shack is paid for, my car is paid for along with any “luxury” items we nad my wife have already paid for. By the way, she is severely disabled.. My health care insurance will certainly not stop. Christie is certainly NOT the person to place in authority over the true chronic pain sufferers. He would be a better manager or authority in the hunt for illicit drugs and those who abuse. This makes the battle for sufficient opioid treatment for we non cancer chronic pain patients a little more difficult but, surely intellect will rise to the surface for us but, not with the authoritarianism we now have in place. If Chris Christie was NOT able to easily, freely, move about because of a painful condition or painful disease, I BET he would get the opioid medication he needed regardless of the CDC “guideline” or not. Maybe he already does.

  17. Barb Ramsey at 3:29 am

    Re: Cannabis. I’ve recently used a tincture with almost no THC. It did not help much. I was relaxed same as a Valium. I can’t smoke. I’m gluten-intolerant. I’d like to add or switch to Cannabis to lighten my body’s drug burden and suggestions are welcome. It’s legal in California but not covered by insurance. (Another ridiculous law!)
    I want to keep informed and be proactive as I’m basically a naive & trusting lady assuming that we live in a reasonable intelligent society. Guess I’m idealistic! My Best to everyone who moves this issue forward 🦋

  18. Barb Ramsey at 3:05 am

    I’m in total agreement with everyone who wrote comments. One thought I have is a new objective scientific Study on usage & side effects of the many other pharmaceuticals which cause serious side effects. I’ve tried many meds other than Opioids (antidepressants, sleep meds, antibiotics) which caused me MORE distressing side effects (even near-suicide) than my current pain relievers which allow me to function after 30 years of 24/7 PAIN. Will Dr. Sanjay Gupta speak out on our behalf as he has for Cannabis? I’m grateful for my enlightened Doctors despite the increase in regulations; I now have to drive to my Dr’s office, talk with Dr. to get written refill for same med, drive to pharmacy to drop it off then return the next day and stand in long line to pick up my med(s). I’m exhausted from these 2 days robbed from my life and need a full 3rd day to rest. WHY WHY WHY are we Chronic Pain Patients punished further by the warped system in place??? I believe there is a type of Discrimination that we’re experiencing and I would love to get to the bottom of the skewed policies adversely affecting us. I’m glad to hear from everyone here and my empathy goes out to you all. We WILL make a difference and effect REAL CHANGE if we stay on track despite our limitations.

  19. piros444 at 6:57 pm

    Someone who becomes an opioid addict from taking them after having a broken leg and surgery is akin to someone became an alcoholic after having a glass of wine or two or a couple of beers every day for a few weeks. I’m sure it happens but is quite rare. Usually, with the broken leg story, closer scrutiny shows prior addictions before this one. Or, tolerance and withdrawal upon stopping are mistaken for addiction.

    Stories like this lead to many patients going without opioids for acute pain even when it is offered even when they are in terrible pain. I’ve gently spoken to quite a few people over the years about the minimal risk they faced and the benefits of controlling their pain while they healed. Most listened and were profoundly grateful (as were their spouses) for the relief, both physical and emotional.

  20. Owl at 2:51 pm

    I know that we all basically share the same story but no one seems to hear us when we tell it. I don’t have any brilliant ideas on how or what but perhaps we need another tactic. Perhaps getting the help of a nationally respected investigative reporter to find out why big pharmaceutical companies are suddenly so interested in getting the CDC, FDA and all their politicians on a witch hunt after us. Is it that if they outlaw all the old meds then they can once again cash in on their new meds like Embeda which is morphine with a “tracker”, which is, of course, newly patented and outrageous to pay for? Is it to kill off this segment of the population because we aren’t “contributing” enough? I have no idea but I do know that the numbers are too small for the agenda they are pushing and there is a reason why suddenly we are public enemy number one, in spite of the fact that cancers are rising, crap in even a box of cheerios would NOT hold up under real scrutiny because the carcinogens are added to it in such high numbers, Mickey Ds is selling poison and no one cares at all. The childhood obesity epidemic should be WAY up further on the governments pet projects list but because pharmaceutical dollars run the show, that isn’t even addressed!! There is something VERY evil at play here and I am deeply afraid that we are just part of a smoke and mirrors show.

  21. Misty Morse at 2:19 pm

    THANK YOU !! Suzanne,
    Very well written and you have depicted very well what we as chronic pain patients go through every day. I have been a chronic pain patient since 95 , at the time the medical community did not acknowledge chronic pain as a medical condition.
    So it was very hard to find Dr’s to treat me.
    I had to go to a state dr to see if I was actually hurt , they said I wasn’t. Anyway , I won my case and got my settlement and now years later am still dealing with the pain from that one accident. Who knew?
    I have two herniated disks in my neck , they cause me massive amounts of pain and severe headache’s.
    I also have TMJ and had to have three surgeries on both knees.
    I am appalled at the way our government is treating pain patients. It is not like this “war” on drugs has not been going on for years , it has.
    It is THE first time our pain management and Primary care physician’s have EVER had a bull’s eye on thier backs.
    As for the whole argument of “The dr did not tell me it was addictive”? I call hooey.
    Every time you get a prescription , the pharmacist hands you a pamphlet that states “this medication can become addictive if taken more than prescribed”. I have pharmacy pamphlet’s from the 90’s that state this. Not only that but if you get any new medication , the pharmacist offers to counsel you. So , UNLESS your someone who just takes medication without heed , then I guess that means you are looking for a bad interaction. So I agree we pain patients need to be heard, we need all the help we can get and get this pendulum swung back to where are dr’s can treat us the way we need them to treat us , and quit under treating us. If not people will keep commiting suicide and we will keep getting the cold shoulder. So PLEASE have friends and family support you on our pain groups and in our fight to keep the very life saving medication we need.

  22. William Dorn at 1:44 pm

    All pain advocate groups need to try and get a meeting with presedent Trump.In person is the only way he will understand.

  23. Rita Kimbel at 12:54 pm

    Reading this gives me hope that we will be heard, there are too many of us for our government to ignore. I have been denied my meds as well, it’s been 4 months of hell for me
    I do have spinal cord stimulator implant to help deal with the 24/7 pain, neurogenic C5/6 injury for 14 years now. My life has already been a fight everyday, this CDC CRAP, is making me very sick. The anger I feel now is taking over and at times I want to give in or give up. I have family and friends that need me. I have a house and animals that need me. I was functioning well till January of this year. Now I can’t function any more the way I used to. What can we do so people will listen to us? I wrote to our new president, my kids call the senators and leave message that the CDC needs to rewrite the dosage milligram chart they came up with. My pain doctor keeps filling out the denial/ appeal forms for my good old United Healthcare. What else can I do?

  24. janice at 12:51 pm

    Thank you for such an enlightening article. I cry night and day for the pain I am in. Having fybromyalgia and both knees busted as well as a bulging disk and herniation in my lumbar region. It is so very sad that there is such misinformation out there. It seems as if things will never be right. Now we have yet another jolly fool taking over a cause he knows nothing about. Seems as if things just become darker and darker

  25. Suzanne Stewart at 11:48 am

    Hey everyone! Excuse my mistake, I apologize as my website was put in incorrectly because I wasn’t thinking for some reason! My website is actually: suzydukettes.wordpress.com

  26. Suzanne Stewart at 11:46 am

    Hello all ! Thank you! For your kind remarks and always welcome constructive criticism! Bob S.,I in no way,meant to put down or criticize the mentally ill and/or addicted persons. I merely was trying to state the frustration of the chronic pain patient always being lumped together with drug addicts. They’re probably as frustrated being lumped together with us! Also, Richard L., thank you! As well and you are one of my mentors and someone I look up to with great admiration! Thank you! For fighting the fight next to me! Also, thank you for the newer and better percentage! I’d gotten my info from this news magazine NPR; but from an article in 2015: Only “5% of people who are prescribed Opioid pain medications, go on to become addicted”, according to our own National Pain Report in November 2015. …. thank you! Everyone and feel free to and I encourage you to copy and send this to the President, HHS, News agencies -especially Fox News bcz Tucker Carlson had s week-long segement on Opioid epidemic. His info was wrong and very skewed! He needs to hear from all of us! I also have a campaign going with only about 200 signatures. We need 1,000 or more! Please help me share and get ppl to sign it?!! It’s at Causes.com and just look for my name “Suzanne Stewart” and look for “Dear Mr.President”… thank you! Again and you are all in my prayers! ❤️ Suzanne

  27. Peggy Boeck at 11:34 am

    I have crps since 2007. It’s a daily struggle, fatigue along with pain. Thank you for information.

  28. Kathy C at 11:14 am

    There are some very powerful interests controlling the narrative here. An unholy Alliance of Corporate Media, and the Pharmaceutical, Medical and insurance industries. The Media has a serious interest in controlling this narrative, and the deceptive coverage, has influenced so many gullible people. Big Pharma, used data, Media, Public Relations Specialists and even Marketing Psychology to promote this. The Media and our Politicians, appear to be challenging Big Pharma. Their part in the created “Opiate Epidemic”, gives the appearance of holding them accountable, while at the same time Promoting their other Products. Lawsuit Payouts are just the Cost of doing business, and are really trivial compared to the amount of money they are making on the “Alternatives.” If the Media was holding them responsible they would write about the Costs involved, and Pharma profits. those topics along with Facts, Numbers and Statistics in Context are conspicuously absent.

  29. Joanna at 9:28 am

    I’m pretty sure that the powers that make the laws are only looking at everything in theory; if they actually had a loved one who suffered from chronic pain, it would be a whole different story.

  30. Bill Halper at 9:09 am

    Very well written describing the personal hell we each experience daily, and the frustrations that at times are insurmountable which adds more fuel to the pain. This administration (and past administrations as well) doesn’t really have a clue as to the fear it spreads. If they truly understood, rather than a former governor whom I can safely bet is not fully aware and knowledgeable of our plight, the “drug czar” should be one that understands the consequences of making uniformed and unstudied proclamations. Rather, he or she should have full unbiased information about drugs, the use and medical purposes behind each one. More so, the CDC should NOT be involved as politics, skewed formation seems to be their MO recently. As the late Elizabeth Taylor took hold of the AIDS epidemic in front of Congress telling them what this disease is, showing the human factor, so too do we need a respected spokesperson to show the human factor, the destruction that can and has occurred with the chronic pain patient by placing us in the same category as the addicts thus forcing doctors not to prescribe for fear of lawsuits and government intervention. Way too much negative hype, destructive televised discussions and more for higher ratings and higher commercial profits. All must remember that this kind of action and talk hurts us!

  31. Elizabeth Ramsey Shepard at 8:59 am

    I believe we watched the same show. I also became incensed when I heard about the national epidemic surrounding opioids. I’ve written to Tucker Carlson, Mr Christie, My Congressman and State Rep explaining the difference between opioid addiction, dependence and tolerance.
    I’m a intractable pain patient I’ve gone through all the horrors everyone has, with finding and keeping a pain doc. with insurance companies and the government interfering with our care.
    Really enjoy the news letter and your monthly posts are very informative!
    Thank you!
    Beth

  32. Michelle Garcia at 8:04 am

    Thank you.🙂 Suzanne, for another awesome article! I suffer daily chronic pain from, arachnoiditis, 7 back surgeries, permanent nerve damage in lower back and left leg, and unable to walk. I saw that week long news segment and was also yelling at the tv! Without pain meds I would not be able to get out of bed! They will never take away 100% of my pain, but they do help greatly. It is a nightmare on how we are all lumped into one catagory with drug addicts. Taking away my medication is literally taking my life away! I appreciate all you do for us chronic pain suffers and will stand with you.🙂 always!♡♡ Hugs to you.🕊 God Bless you.🙂

  33. Candice Hawkins at 7:32 am

    Suzanne……I’m an RN with Chronic pain due to a failed back surgery and nerve injury. Like the old song, “You Took the Words Right Out Of My Mouth”, I too am tired of being part of the stats that include addicts on the street. I read a story about a man who wrote a book that was generated due to his mother doing opiods and he damned the drugs but didn’t make his mother responsible for her death when she went over the border to get Oxycontin in Mexico. It was on the LinkedIn site. I was appalled at the people who backed up his feelings for the drug killing his mother and if course due to my personality I tactfully told him to check out the real statistics and also be aware if ones own accountability when taking meds. He stated she wasn’t told the opioid was addictive. I wasn’t too crass but did say every patient is responsible for reading the papers stapled to your prescription and to ask the pharmacist if questions arise.
    Yes, you are right, it’s people who are reactive about this problem and not sensible in understanding that any drug can have a down side but there is an actual use for it. It’s very frustrating to live in fear of my pain but add to that the possibility that due to people running thru the night with torches and clubs after a useful drug, I may lose the one thing that helps me be able to get out of bed, care for my disabled son and have a life. People seem to have lost the ability to Walk a Mile In Someone Elses Shoes.
    Thanks for your story.
    Candice H in Texas

  34. Debbie Lee at 7:14 am

    Thank you so much for your post, Suzanne.
    I have whole body RSD/CRPS. It’s been 32yrs of 24/7/365 relentless pain.
    I guess I’m not the only one whose pain increases… just from typing this short reply on a touchscreen.
    Sorry you are also having to manage the severe pain of RSD/CRPS.
    Take good care of yourself.
    ((Gentle hugs))💙

  35. Denise Bault at 6:57 am

    Great article! Should be sent to every person who is involved with dictating what/who/how opioids are given…

  36. Richard A. Lawhern, Ph.D. at 5:55 am

    Thanks for a heartfelt and constructive narrative, Suzanne.

    You wrote: “Only “5% of people who are prescribed Opioid pain medications, go on to become addicted”, according to our own National Pain Report in November 2015.” Be aware that in the 2010 Cochrane Review for effectiveness and risks of long term prescription opioid use among patients who had not previously used this class of drugs, numbers even lower, at less than 1%. Studies of the incidence of drug addiction from prescriptions are just as subject to error as those of overdose, and for many of the same reasons.

    See also, “How Would Opioid Prescription Guidelines Read if Pain Patients Wrote Them” http://nationalpainreport.com/how-would-opioid-prescription-guidelines-read-if-pain-patients-wrote-them-8833330.html

  37. Cindi at 4:48 am

    Extremely well written, thank you so much! As a multiple chronic illness sufferer, I’ve been saying the same things. Another point of frustration for me is that no one is offering any alternatives! So ‘they’ take away our pain meds, then what?? I posed the question to my doc & he just looked at me. I have tried so many other things & continue to. I know nothing will make me pain free, but because of pain meds at least I have some quality of life.
    Keep up the excellent work, soft hugs 💜

  38. Bob Schubring at 3:51 am

    We must overcome the temptation to divide ourselves and fight each other.

    A good place to start is the division between pain patients and drug addicts.

    Both groups are sick.

    Addicts are mentally ill and self destructive. They require mental health care.

    Pain patients have an illness that’s not mental, which illness induces pain. We require pain relief. Also we require treatment for the disease or injury that induces the pain.

    It’s possible to be a member of both groups, in which case, one needs both types of treatment.

    In the US, about 2-1/2 million people have addiction.

    About 100 million Americans have chronic pain.

    Attacking each other, divides us into smaller groups.

    Finding common ground creates a voting Bloc that can destroy the careers of politicians who dare to fight us. We merely need to put our needs first, when voting.

    A big advantage for us will be when we realize this is possible.

    During last year’s election campaign, the Republican primary offered opportunity for us, that most of us ignored. Senator Rand Paul took a somewhat-cowardly stance, advocating that Suboxone be made more widely available for crisis intervention, and ignoring the bigger need, that pain patients must have access to pain relief. On the plus side, Senator Paul wants cannabis, an old and very safe
    Anti-anxiety drug, re-legalized, which will help the mentally​ Ill but has no proven benefits for severe pain. I actually made contact with the Paul campaign and got one of his aides to learn a little about our needs. Meanwhile, Bush and Christie continued to beat the war drums and then Trump won the backing of an Internet billionaire and ran away with the nomination.

    Over on the Democrat side, Bernie insulted us and Hillary proposed a tax on our Medicine, adding injury to the insults.

    By doing nothing in that election campaign, pain patients won nothing.

    We need to make ourselves heard to potential allies. Every Congressman and Senator who is part of Rand Paul’s pro-cannabis coalition, needs to hear, loud and clear, that we all want cannabis available for the people who need it, but we also demand that pain drugs stay legal and accessible for people who need them. If we vote as a Bloc of 102-1/2 million voters, who will vote out every politician who takes away anybody’s medicine, those politicians who want the cannabis vote will wise up and help us, too.

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