Open Letter to Governor Chris Christie: Why NOT include Chronic Pain Community?

Open Letter to Governor Chris Christie: Why NOT include Chronic Pain Community?

By Carole “Andi” Robertson.

Editor’s Note–With the expected announcement from the Trump Administration about action on the opioid issue coming this week, we thought this letter from Carole “Andi” Robertson  to Governor Christie, who chairs the President’s Opioid Commission was worthy of publishing.

Dear Governor Christie,

I am addressing this directly to you as President Trump’s choice to lead this task force.  I would like to understand why it is there has been neither input nor even requests to hear from the chronic pain community while this task force prepares its recommendations to the president.

Andi Robertson

I am in severe chronic pain from a low back injury I incurred in 1998.  After several attempts at major surgery and a multitude of surgical procedures of all sorts and opinions from many different experts, currently the only way to offer me some semblance of my old self and at least some quality of life is the aid of opioids.  I exercise regularly, have been involved in many types of physical and occupational therapy, including Cognitive Behavioral Therapy (CBT), yet am still in need of pain management utilizing interventional methods, pain medication and muscle relaxers.  I have NEVER abused nor misused my medications that I have been prescribed over a 15 year period – where I have even gone off of said medications on four different occasions thinking I could live without the aid of them.  I have boxes of reports from various types of alternative treatments tried, where some have helped and are being used today, yet still need the help of opioid pain medication daily.  I had been asked by my treating physicians over a several year period to stop working as the stress alone was making me worse.  I succumbed to their requests and sold our business only to still at least need the assistance of opioid pain medications and now declared disabled since I was 49 years of age five years ago.

I would like for you to please explain to me and as well as over 100 million like me in the United States alone, why your task force seems to be overlooking such a HUGE issue.  Not listening to this community consisting of so many seems to be such an oversight — as WITHOUT any current major research for working alternatives, and not to mention the fact TRUE chronic pain patients do NOT misuse or abuse medications prescribed by reputable doctors who follow all the very restrictive rules and regulations put forth already by the CDC, FDA, insurers, et al., your commission’s recommendations may in fact fail many more than it helps.

I would be happy to open a dialogue with your commission on this topic myself, one of so many who’s voices seem to be going unheard.  I am just an ordinary citizen, college educated, hard working, once successful in business, life and marriage, yet because of this stigma placed upon me and so many others, have lost nearly everything… the “everything” will be when without a workable alternative to my physical issues and the loss of the very medications keeping me functional, ALL will be lost.

Sir, I beg of you to open your door and listen to us as if what we believe will get so very worse for us happens, there will be many, many more deaths than what you are trying to prevent from this “opioid epidemic”.  All we ask is to be heard.

Thank you kindly for taking time out of what I am sure is a very busy schedule to read my letter.  I look forward to hearing from you.

Sincerely,

Carole A. Robertson

Cypress, Texas

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There are 43 comments for this article
  1. Terri McFarland at 3:56 am

    I would be very interested in reading the reply to this letter. I wonder what these politicians excuses will be when they send hundreds of thousands of us to street drugs as our only alternative to suicide. If they think there is a crisis right now just wait 2 years and see what the statistics are then!!

  2. Judy at 4:32 am

    Great letter!!! But I seriously doubt Governor Christie ever saw it. It was probably read by a staffer who deemed it maybe worthy of a form letter reply, maybe not. I’m hopeful that “someday” someone will hear us, but probably not in my lifetime. No, I’m not being a pessimist, I’m being realistic. I’ve been living with 24/7 chronic pain for 25+ years, I’m just done, I am physically & mentally worn out. I can’t keep up the fight. No, I’m not suicidal. I’m just resigned to accepting the fact that the ONLY way I’ll ever be pain-free is when I’m dead. And I welcome that day.

  3. Francine c wenz at 2:33 pm

    I have severe fibromyalgia that especially affects my back. I need my pain pills . I had to go to hospital pain center and get lancet injections . Itwas not suggested I get sedated. I thought I went to hell and back. So far it has not kicked in and I have horrific pain. Vicodin isn’t even touching the Pain. Waiting for procedure to kick in 😪

  4. Leslie Meadows at 7:47 am

    Don’t bring politics into our plight!Both sides have voters that have lost ppl to OD! You alienate ppl with political BS! They r all in need of a wake-up call to reality.They think there is a simple solution BUT there isn’t.These OD’s will still occur only with heroin,methadone&other street dope.It won’t end taking our pain meds away,they r sadly mistaken.Our doctors should have the last word in their patients care not politicians or some WH team who knows nothing about pain & desease or the cause of pain!

  5. R, Michael Maddox aka: Old Hippy at 9:59 pm

    Very well written. I only wish I could be so articulate. I must agree with Robert. I really do not see any help for us in this current state of panic. I just wish MORE doctors would stand up to them. I have written every media in Ga. NONE will even respond. They only talk one side of this issue. It is usually some RICH Kids MOM. Because he OD’d they get all the media attention. I cannot get any of them to speak of PERSONAL RESPONSABILITY! It isn’t my fault that their kid screwed up. Not my doctor’s either. This just shows that these republicans that speak of smaller, less govt. control over citizens lives is all BS. They want the same control, just THEIR idea of control. As long as they keep us fighting amongst ourselves, we can not get together, as a LARGER group, to take them down and OUT! I sincerely hope all of you will continue to speak up. If we give up. we are really done. Thank you and PEACE11

  6. Connie Small at 7:35 pm

    I have had chronic, intractable pain since the age of 42. I am 72 now. I wold not be able to walk without my pain medications and would be bed ridden for the rest of my natural life. I now spend 85% of my time in bed because of the two illnesses I have. There is no cure for the nerve damage I have in my perineum…from 30 years of Herpes virus attacks which have destroyed the nerves in my rectum and the very horrible, Interstitial Cystitis that I was diagnosed with that causes the same level as the third most painful Cancer pain. This pain I experience is all the time. Terrible burning and irritation which could easily drive someone insane without pain medication. The pain has increased over the years and I have it 24 hours per day. Without my pain medication, my pain would be at a 20 on a 10 point scale every second of the 24 hour day. There are so many of us with chronic, intractable pain who rely on their pain medication because supposed Pain Management Clinics have nothing to offer us. I personally have been to 6 pain clinics in Boston and Florida. Eaach doctor said the same thing to me. “I cannot help you. Damaged nerve pain is the most difficult pain to treat. The only thing I can offer you is pain medication. I have taken Lyrica, Neurontin, anti-depressants, trigger point shots, nerve blocks, acupuncture, physical therapy. Nothing came close to bringing down my pain to a 6!!!

    My pain medication keeps me alive and leading some kind of life. I always stick to his prescribing directions, keep my pills in my safe in our office, and we do a pill count twice per month. I want to live and with my pain medications, I no longer have to think about the unthinkable.

  7. F.S.T. at 2:01 pm

    Because of the coming health issues that are sure to befall Chris Christie (look at him!), he would do well to listen to what the pain community has to say.

  8. Debra McDonald at 1:41 pm

    For years now I have been on various pain meds, had surgery for a tiny part of my back to correct spinal stenosis. I was told by the surgeon that it may not give much relief and the worst case scenario happened.. net relief at all.
    I sit here in yet another doctors office with tubes in my chest and bandages on my feet thinking, “just when did my doctor stop prescribing my pain meds and the federal government start telling me what pain meds I can take?” My pain levels rarely go under a 5, even on a good day. Sometimes I wish I was stronger and could smack my pain doctor. He is rude and never asks how my pain is. It’s like he’s got that hand out for my copay and see you in a couple of months. Oh if you have break thru pain use Aspercream or maybe acetomenifen!! Please won’t someone hear us? I had surgery last month to have yet another toe and even more of my foot amputated. My pain docs response was to send me 20 hydrocodone pills at a much lower dose than I normally take. Wow, that helped a lot.
    The folks who subscribe to this group are mostly in the same place. We all at one time had a physian who, through lots of tests and different med to get us to a places where we can at least exist. In the many years I’ve been taking these meds I have never lost pills, never tried to sell them because so hurt ALL THE TIME. My husband locks my pills in a safe. I can see both sides because I have a daughter who is an addict. There have been times Ive slept with my pills under my pillow. Hear our cry, we need help. I’m afraid more people will ultimately go to other options like marijuana or Kratom. Desperate times call for desperate measures! Please hear US!

  9. Carl S. Dunn at 7:34 am

    After I read the letters describing the fear and resignation of many opiate users contemplating suicide, before you go that far, consider what a friend did to find a way around this nonsense. I must say that in no way do I condone or support what route he took, I am merely passing along a story of what he did. When faced with his doctor cutting him off his pain meds, he went to the methadone clinic and signed up. He said he could at any time get as much medicine as needed for pain, and if needed he could get a medically supervised slow taper off methadone. But, he had to do it before he ran out of his prescribed medicine. Now, in my opinion, maybe it is supposed to be for addicts who want to change the direction of their lives, but, don’t you all qualify? After all, the gov’t is forcing you to “change your lives” too! So, again I do not in any way claim this is my suggested route, I am only passing along a story relayed to me as such.+

  10. Maureen at 7:31 am

    Great post Andi! I am so very sorry for all that you are going through. I certainly can relate. Keep strong warrior!
    Just a side note… From what I’ve heard Chris Christie is no longer Trump’s drug czar…there has been a new replacement but I didn’t get his name yet.
    Christie surely is negatively cracking down big time in NJ though…my home state.

  11. Bruce at 10:03 pm

    You were way too nice, Carole. I suppose if we show them how hard we try, and how straight we play it, that they’ll listen to us? The whole “we’re just like you, only different” thing.
    This is the same Christie who sat on that empty beach by himself on the holiday weekend. The only person even mildly interested in the pain community in the midst of this crisis is MARSHA BLACKBURN, R-TENNESSEE, who made a statement on behalf of us, warning that the opioid hysteria has gone too far. That “a lot of people are being hurt by this through unintended consequences”, which is all you really have to say. Of course, I could tell them that I can’t exercise (just makes it more excruciating), have tried a few alternative methods, have never even considered giving up my pain meds (we don’t want to give them any ideas, now do we?), and that there isn’t a damned thing that helps my pain except opioids. You see, I have NEUROPATHY- without a doubt the most gruesome affliction you could ever have, as if your affected areas were being CRUSHED 24/7, and even though I don’t need to tell them – that they’re LIGHT YEARS AWAY FROM A CURE. You see, they’ve already proven that they don’t give a damn about the neuropathy community, and it’s likely that nothing will make them care, because hey – it couldn’t be THAT BAD, right? I mean, the pain comes and goes, right? Au contrare – this lights you up so bad that 50% of neuropathy sufferers commit suicide after 10 years, and THAT’S *WITH* MEDICATION!!
    Well, if I sound a little fed up – hey – you can’t have everything in life. My advice? Just contact Ms. Blackburn and forget Christie.

  12. beth at 6:48 pm

    Totally agree. I have Complex Regional Pain Syndrome, formally known as Reflex Sympathetic Dystrophy which ranks higher than childbirth, amputation or cancer pain on the McGil Pain Scale. Yet living with a Non-curable conditon, I need to take a plethora of medications one of which does include an opioiod prescribed and monitored by my physician.

    Not everything is straight forward. But we all must continue to educate legislators making decisions that will impact so many living in chronic pain which are REAL medical conditions.

  13. Sandie Hamilton at 6:36 pm

    Oh my goodness I thought the story powerful enough but then read the comments. Trying to read them to my husband I cried. Our stories are alk the same they vary in cause but the effect is the same and we are all goid people trying our best to live life. I dont see one druggie on here saying I need my meth or crack…just people with pain saying hear us!! This needs to be sent comments and all tovthe President every viable news source face book Twitter. ..can we get a reporter for tge washingtin post to run it? I am certainly passing it on. Oh God hear our cry for this battle must be Yours! Fight for us. Hear my prayer!

  14. Freda at 5:56 pm

    Although i live in canada i am a intractable pain syndrome patient who has tried medications over a 40yr lifetime to find out my intractable migraines have NO CURE so i depend on opiates to give me some quality of life at age 55.i cannot go shopping, do chores, do housework, visit with family without taking my medication i am bed/couch bound without.my blood pressure/pulse rise putting me at risk of stroke or heart attack..soplease do not forget about us…intractable pain is worse than chronic or acute pain and it never stops the pain is 24/7.I cannot live in the pain i was in before my doctor prescribed morohine for me…because he knew i had seen every specialist and tried all medications and realized i have a raredisease that has no cure no treatment..i believe the cdc has forgotten about us along the way.people who abuse drugs shame on you please get help.i have never abused my meds and never over dosed i only take what i need no more no less.to take away our opiates would be like taking away insulin from a diabetic its wrong its inhumane and we pain patients need our medication to function to have any quality of life.we would not let our pets suffer dont let us suffer!

  15. Alison at 4:14 pm

    Thank you Carole for writing your story in such understandable terms. Your story is my story almost exactly. We are of the same age, began having chronic pain in the late 1990’s, we have both had to sell our business, have not abuse meds, terminated opioids multiple times but had to return, and have well documented evidence of alternative medications, procedures and surgeries. Our only difference is in the order of our college, which I am attending now with hopes of finding a job I can perform while living with chronic pain. I am wondering how I will be able to cope with my opioid medications being cut off this December by my insurance company and my “pain management” doctor. School at my age is hard enough without having pain return to the forefront of my mind. I don’t want to be on disability, I want to work but I don’t know how I will be able to after December.
    Thanks for sharing Carole. I’m sorry for your plight and mine but just knowing someone else out there is experiencing the same thing is of some comfort.

  16. 8 million to the cause at 3:36 pm

    Audry,

    I’m so sorry. Every comment I read under the articles involving the treatment or lack of are worse than the prior cp patients. Many of us have written our legislators. I recently heard LA.’s senator: Kennedy secured 8 million to combat “prescription” drug abuse & mentions the senate passing “Jessie’s Law.”

    Reading our stories are horrific & does remind me of pre-holocaust days when rationing started. I was thinking: what about bombarding these senators twitter feeds w/our stories? Pick a day & a time! After-all we have to endure their robotic talking points don’t we. Rae

  17. Shelley Kennedy at 3:16 pm

    I am Canadian & we have the same war on Opiods here as in the States. The media from our Country & all over the world seem to have pulled the wool over the eyes of the public. Why everyone is so quick to believe anything the Media whores print is beyond me but they have so much power & as you know they need not even give proof! False studies are referred to & no one even seems to check out what or where these studies were done & were they even accurate? The latest misinformation is telling the country how alarming the rise in accidental suicides are! What they tell no one is that the patients that have had their pain meds ripped from their lives & commit suicide as they can no longer bare the pain are the suicides that are increasing this count. In total fairness these peoples deaths should not be considered in this category. It’s a misconception & a miscommunication that is taking lives everyday. More of us are dying everyday than the people they claim they wanted to help. No one in government is either taking into consideration even the possibility that for those of us with intractable chronic pain need medication to function as a human being. They don’t listen to the specialists that give proof that patients with intractable chronic pain, that their bodies process the drug in a much different fashion. Why do we not get high when we take these drugs? Because these drugs are metabolized much different than someone using drugs recreationally! Most Drs will not admit this even though it has been proven scientifically. It’s so much easier to clump chronic pain sufferers in with people who will do anything to get a fix. Even risk dying or a drug abuser! So because of this the families & friends of those that suffer assume their loved one is an addict & in need of getting off the very meds that help us to have any quality of life! No one in government today will even try to help us. They won’t put people o these commissions that deal solely in chronic pain care. They have Drs on commissions that are psychologists & family physicians who don’t actually deal with chronic pain. Why? Because they want people on their side coming in with their mind already made up! I just wish that there was some decent person that would say hey, where r the Drs that deal with pain. Where r the scientists that have studied & proven that the brain processed these meds differently for people whose brain chemistry is interfering in the ability to deal with pain? We need someone that will take the pain patients experiences & lack of a quality of life that makes their life unbearable! Try doing that & that # of people being listed as accidental suicides is going to drop.

  18. Pam at 3:03 pm

    Excellent letter!! I too have written to this bafoon multiple times, I finally received two letters emailed to me from Christie/opiod commission the other day. What a total effin slap in the face to all of us suffering and being neglected, abused, mistreated, degraded, stigmatized and discriminated against, as if that isn’t enough, The emails were badically fom letters tha said the same thing all about addiction. how addiction starts from a legal prescription, how marijuana yes marijuana is the gateway to rx pills, not one word about chronic pain, the pain community, pain pts turning to suicide, NOTHING! Whoever is replying to our letters obviously hasn’t read one word of anything I said. It infuriates me!! These scumbuckets continue to silence us, turn us away, and push us to our deaths!

  19. Michele Youngblood Howe at 2:10 pm

    Thank you for writing such an open and honest letter that I pray will be read with empathy and compassion and not just stuck in a file to be forgotten about.
    I can’t even let myself think about my future if my medication is taken away or my Prior Authorization for a surgically implanted pain pump is denied. I will not have a future without these. I am 56 years old and was disabled by a Surgeon in a botched surgery in 2001. I have had to have many organs removed due to his damage and becoming Septic. 3 months in the ICU and many more surgeries, as well as being brought back to life twice, without a single apology from him. I nearly lost my life, lost my career, my marriage and many “friends” who forgot that I still exist…
    I’m tired. It’s no wonder why I have been diagnosed with Depression, Anxiety and PTSD…And now have Osteoarthritis in my Spine, Joints and 5 herniated discs in my lower back. I’m tired of the pain, the medical costs, Dr appointments and all of the forms that I have to send in to continue receiving disability money. I wish I never had to take another pill in my life. It’s embarrassing to open my purse which is full of prescription bottles or to trip and take another fall in public bcuz I can’t lift my feet far enough anymore bcuz of the herniated discs. Do you know how many people just turn their heads and walk past you without offering help? Too many to count anymore.
    I am so thankful for my Doctors. Without them, I would have ended it long ago. They give me hope and support, fighting with my insurance company to get the help I need.
    I believe that the only reason why my insurance company will probably approve the implant of the pain pump is bcuz one of my pain meds cost over $16,000 per month. That’s not a typo error, folks! I had to bring it to their attention while pleading for them to approve the pain pump trial. It is less expensive to go ahead with the surgery to implant the pump than to continue paying this ridiculous cost. That’s just 1 med! It boggles my mind how this went unnoticed for so many years.
    Anyways, I’m not here to complain about my health issues. I feel fortunate bcuz I’m not going through anything near what I read about other people who are being denied. In fact, it makes me feel sad and guilty, all in one, bcuz I’m blessed with great DR’s who support me. It should be a crime to deny pain medications to all of those who have never abused their meds.
    All we want is a chance to feel normal again and to be able to be productive and take care of our families. Shame on those who judge or play Dr without a license. One stroke of a pen and someone’s life is destined to hell. Maybe they should think about their future? What’s going to happen when they are injured, then denied pain medication? What goes around comes around.
    The only problem? Money does buy anything. I’m sure that the Governor and President will Never have any of the problems that us “little people” do when they try to get their pain medication. Sad to say, but true.

  20. Lora Berry at 1:54 pm

    Thank you Carole for a well said letter!! I am also a chronic pain person, I have fibromyalgia and chronic back pain. I have never abused opioids over the 17yrs of taking them.
    Chronic pain needs to be addressed by either educated professionals or by us the actual sufferers!!! What do the bureaucrats know about chronic pain? They lump us in with abusers and we are far from that.
    If there is anything I can do to help make Chris Christy aware please let me know, I will do anything.

  21. Danny Elliott at 1:27 pm

    I have written a very similar letter to Gov. Christie and the members of this “Commission”. I wrote it several months ago when the formation of it was made public. I nominated my Pain Management Specialist physician when this “Commission” announced that there was going to be a delay in their recommendations and that they were looking for additional members who were experienced in chronic pain.

    Just a few days ago, I received a form-letter type email. It thanked me for my support in fighting this “opioid epidemic” and asked that I continue with my support. The email contained obvious copied-and-pasted paragraphs. It didn’t address a single word I wrote or any of my concerns about not including pain patients or Pain Management Specialists on the “Commission”. Just like everything else in this world, it completely ignored the problem of chronic pain and the ignorance of those individuals on the “Commission”.

    Maybe this letter will have more effect on it than mine did. But I wouldn’t count on it. The chronic, intractable pain sufferers of the world are continuing to be dismissed and ignored by the past Presidents as well as the current one. Such a sad state of affairs.

  22. Audrey Jennings at 11:57 am

    My name is Audrey Jennings and I live in Louisiana. I am 60 years old and the mother of three grown children and nine grandchildren.
    I want to write my story as thoroughly as possible. So I guess I’ll start back in 2004 at the age of 48 when my problems began with the bones in my right wrist. I have always worked with my hands on computers my whole life. Eight hours a day five days a week for more than 30 years sitting at a desk and on computers.

    Arthritis runs in my family and both my parents had it. So that’s probably where I got it from.

    Back in 2004 I was having serious problems with my right hand and wrist. The pain was the worst pain I have ever had other than childbirth. It was at a point where I couldn’t hold onto things and was dropping stuff and pain was constant. I just assumed I had carpel tunnel syndrome because of the symptoms I was having. I probably went a year before I actually had my hand/wrist checked out by a doctor. As soon as the orthopedic showed me the x-rays I could see exactly what the problem was. I had a dead wrist bone right smack in the middle of my wrist. That’s when I was told that I had keinbocks disease. I had never heard of such a thing. I had a very good orthopedic at the time.

    Kienbock’s disease, is a rare, debilitating condition that can lead to chronic pain and dysfunction. It happens when one of the eight small carpal bones in the wrist, the lunate bone, becomes damaged because there is no blood supply. It is also known as avascular necrosis of the lunate or osteocronosis of the lunate.
    There is no cure for Kienbock’s disease, but there are treatments options that can help restore the blood supply and maximize wrist function and reduce pain. If it’s not to the point of Stage 4.
    Problems with arterial blood supply. Most people have two blood vessels supplying blood to the lunate bone, but some have just one.
    Blood does not drain away properly through the veins. Trauma may affect blood supply, for example, a single blow to the wrist.
    There may be skeletal variations, for example, an abnormally shaped lunate bone.
    Diseases that may increase the risk include lupus, cerebral palsy, sickle cell anemia, and gout.
    One study found that 9.4 percent of patients with cerebral palsy also had Kienbock’s disease. I did not have any of these previous list of illnesses though. Mine was from only having one source of blood flow through my wrist. The fact that I use my hands eight hours a day every day, was pretty much the Trauma that caused me to get this disease and the fact that arthritis runs in my family. I was at stage 4 where there is no cure or ability to restore the blood because the bone has completely died. I had to have surgery to remove the set of three bones that run between my hand and where my arm starts. I did not get the fusion where they fuse the hand to the arm. Because I still needed to work and I needed as much mobility in my hand and wrist as possibly able. The surgery I had was where they actually remove the three bones and set my hand down upon the arm bones and it healed in that position. I have about 60% mobility in that hand/wrist. To this day I can never lift anything over 20 pounds with my right hand. If I do, I’m risking breaking it to the point of no repair.
    Of course during this time I had to be put on pain medications to help me get through the day and have the ability to work. After the surgery and recovery, I still had pains for up to a year afterwards. Just when I thought my life was going to go back to normal And I was back working even with a partial right hand, I was able to work.
    In the year 2009 Without any warning whatsoever, my right leg decided it did not want to work anymore. It just did not work! It was like dragging around a dead limb. I had been going to doctors to figure out why my leg no longer worked. At the same time, I was having severe neck pain, severe burning inside my neck and I could only get relief if I lay down, which meant it was hard to do my job sitting at a desk. It took one year and many MRIs, X-rays and CAT scans for the doctors to pinpoint the problem that was causing my leg to not function. Come to find out my neck, cervical spine had several bulging discs and narrowings in the spine and I have degenerative disc disease. The first cervical fusion I had was from C-2 to C4 thru the back of my neck. It was totally unsuccessful. My leg never did get back to working and I progressively got worse. The pain was chronic. Exactly A year later another neurosurgeon did a complete cervical fusion from C-2 to C-7. He explained it to me that in order to prevent the “domino effect” from happening in my spine this was necessary. Whatever he did, it worked! The first time I got out of that hospital bed after surgery my right leg was working again. It was very weak but with almost a year of physical therapy, I’m walking on it again. I still have to this day some problems with that leg. It has spasms and much weakness. Sometimes when my brain tells it to pick it up and walk the leg doesn’t want to listen and I can trip and fall very easily. I literally have to keep my mind on the fact that I want to raise my foot to walk and I will. I do not take walking for granted anymore. Even with all this and even more surgeries in my future, the pain never goes away. I believe once you have surgery on your spine and the nerves involved they are never prepared back to normal and all kinds of nerve damage happens throughout the body along with chronic pain. Since that time, I have had a complete knee replacement, which was a nightmare in itself and lower back fusion from L2 to S1 which was just two years ago, unfortunately the lower back fusion failed. The bone did not fuse Around the metal hardware. So I am walking with a failed back fusion and I am always in severe pain. My complete knee replacement it’s over three years ago and the pain is still there. I’m not talking about a headache, or a toothache, or a cramp. I’m talking serious chronic pain. Kind of pain that just goes through your whole body takes everything out of you just to deal with. I’m 60 years old Now and I am under a pain management specialists care. I need the pain Medication because if I don’t have it, I can’t get out of bed. I can’t function like a normal person. I can’t even take a shower by myself. I’m not an addict. I don’t look for a high with my medication. I am able to function fairly normally when I have my pain medication. I’m able to walk fairly decent, I am able to cook a meal, wash clothes take a shower and sometimes even venture out to visit my grandkids. If I wasn’t on my pain medication, I would probably just lay in bed living a debilitating life and wishing I would die. What the government has been doing with this so called opiate epidemic, is truly scaring so many real chronic pain patients to the point that they don’t know what’s going to happen from one day to the next. We are able to function in life fairly normally when we have our pain medications. With all this scare tactic news coming out about this so called opiate epidemic, I even decided to get off of my meds because of the fear of becoming addicted. I was scared to that point. I stayed off of my medications for six months and I was still recovering from my lower back Fusion when I did that. Even after it was completely out of my system, I could not function on my own. The chronic pain was debilitating and always seem to be any level 10 pain level. I have had enough! I went back to my pain management doctor and get back on my medications. I even went as far as getting the shot in my hip area for the excruciating pain that was running down my hip into my leg and down to my foot making it very hard to walk. I went into the hospital as an outpatient and receive the shot which caused my insurance company $11,682. The medicine that was injected into my body only gave me two days of pain relief and now my pain is back just as bad as before. What a waste of the insurance companies money. So you see I have tried everything outside of pain medication to help relieve me of my pain. Nothing else works. The Government is scaring doctors into not giving their patients medicine or cutting them off completely without any type of withdrawl assistance. The government is causing more deaths this way for those who truly suffer chronic pain then for the addict on the street who is looking for a high. You could take all the opiates in the world away but if there is an addict out there looking for a high they will find it whether it’s opiates or something else. We are not like that. To chronic pain patients with terminal illnesses that are incurable and cause severe chronic pain we are just looking for some relief so that we can live a fairly normal life. I am under a pain management specialists care and I follow all the rules, take the drug test and do everything I am told to make sure I am able to continue keeping my pain medication. But I am reading stories of people who are worse off than me that are getting their medications taken away cold turkey and with no withdrawl assistance. People are committing suicide because as much as they have tried everything to relieve the pain nothing works. I’ve done everything, physical therapy, water therapy, body massage, I’ve even gotten the epidural shots. It’s scary waking up every morning not knowing if you’re going to have the pain medication that helps you get through the day and function a fairly normal life. If I didn’t have the degenerative diseases, osteoarthritis, neuropathy, type two diabetes, cardiovascular disease, and several other conditions, I would love never take another pill as long as I live. Pharmaceutical medicines are killing us, it’s not just the opiates. It’s the statins, the blood pressure medicine, diabetes medicine and everything else in between that is poisoning us way more than opiates. I live in daily chronic pain. If I have a day where I am not in pain, I think I have died and gone to heaven. How nice it must be to live life with no pain. I haven’t known that for over 10 years. All I want to do now is live the rest of my life as comfortable as possible and able to take my pain medications so that I could feel fairly normal. Society is making us out to be drug seekers. That is the furthest from the truth. Everyone of us would give up every medication we take if we thought we would know longer have debilitating chronic pain. Please don’t take our medications away. That would be barbaric and insane. The elderly are the majority of this country and this country needs to take care of their elderly. I live on Social Security disability and can no longer work. This is not how I expected my retirement years to be like. To have to beg my government to not take our medications away was the last thing I ever thought I would have to do.

  23. Sandy Weis at 11:55 am

    I too am a Chronic Pain Person for 50 years now. I’ve been on numerous different medicines through the years. I am also an “opioid” person for several years and have never abused or misused drugs, especially opioids. If one has never experienced chronic pain, I find it difficult for them to make judgements on those of us who carry it with us every minute of every day.

  24. Renee E Mace at 11:48 am

    I too am in the same boat since 2001 after a very bad car accident I developed Central Pain Syndrome in both my legs, I have tried everything out there meaning, supplements, prescription medications, shots, counseling,Tens unit , bio feedback, everything out there to ease my pain. For me the only thing that works is oxycodone because I am allergic to codine and morphine. Is there a petition we all can sign our names to to mail to Governor Chris Christie? I hurt very bad and even writing this is hard.

  25. Veronica Clark at 11:39 am

    From what I’ve been able to ascertain, they are clumping heroin and other ‘street’ drugs into their ‘opioid’ epidemic. Sorry, but I’ve never taken those and never will.
    Is it our fault people take those, or are addicted to them? NO.
    Is it our fault parents DIDN’T take charge of their childrens’ pain meds? NO.
    It is our fault we ourselves are in so very much pain that it seems we are falling into a black hole, with no light at the end, and are refused pain meds that we used to take for years to help- all due to this ‘epidemic’? NO
    Now, me, myself, have never become addicted to any pain meds. Had allergic reactions to many. Went off mine because was asked to by pain clinic, cold turkey, with no problems except for huge increase in pain.
    Now, no doctors will prescribe anything. I’ve been disabled for numerous medical reasons for 15 years now. Have never, ever, been so dismissed by the medical community like I am now.
    I passed a home military inspection when we moved. Always kept a very nice house. Now, won’t let anyone come to my home due to the total disarray. I’m embarrassed, but am in so much pain there’s nothing I can do.
    Street drugs should NOT be included with chronic pain patients!!

  26. Kadean at 11:18 am

    OMG!! It’s about time! Thank you very much as I’m in the same predicament. I follow every rule and guidelines still trying to manage working out and maintain my physical and mental help as they rip away at some normalcy in my life! I’m afraid I won’t have the strength or energy to partake in my children’s everyday life and become bed bound which frightens me so much! Please don’t take away my everyday assistance if i’ Following all of your rules. Thank you again for your leadership and voice for us all that are in this together.

  27. Darlene at 10:27 am

    CRPS I do not abuse why is it that chronic pain disease has no been researched?

  28. Susan Kay Dodd at 10:24 am

    I also am an pain patient who is dependent not addicted to pain meds. If I was cured, I would no longer require meds. Let’s open a dialog about us with the government.

  29. Ibin at 9:51 am

    Christie has no medical background, whatsoever, I understand. Giving Chris Christie ANY “authority” to advise Presaident Trump how to contain a “perceived” opioid crisis would be the same as me, a high school only graduate, giving an educational speech, on ANY subject to ANY university…..in America. How BETTER to adress the other side of an issue, than to acknowledge the other sides viewpoint?

  30. Ron Ward at 9:20 am

    Thank you so much for speaking out .. I am in the same boat as you ie failed back surgery an I’m in chronic pain 24/7 365 Days a year .. the only thing that helps me lead some sort of normal Semblance of life is on opioids .. I also have tried other methods An still do in com junction with he Meds yoga , pt tens unit . Etc .. An I need my Meds to be able to even get out of bed An cook clean my place An walk my dog .. this is not funny what the cdc has done is unacceptable I’ve lost 3 Freinds to suicide after their doctor was forced by these be guidelinesto cut them off there Meds with no help .. I’ve been using my Meds responsibly for over 12+ years .. I don’t sell give away or abuse gem at all .. I think they have the misconception that is legit and pain patients take Meds to get high ! Bs .. when your in chronic pain and take the Meds it’s working to combat the pain An there fore doesn’t get you high .. we need our Meds An we are all still functional citizens that require a regimen of opiates and such to live a life at all .. this craziness need to end now .. since the issue of he cdc guidelines the actual herion fentyal epidemic is raging forward an ods are still the same if not worse as well as the problem that arises from these street drugs .. were the pain patient community are not criminals !! Err people that use medication like any other to help benift us .. untreated chronic pain can kill ! Literally ! This is not a joke I An with the rest of my fellow pain peeps .. Anythjg we can do to have our voices heard I’m in An will be till his is resolved and we don’t have this extra strss on top of what we go Gru daily ..

  31. Leslie Meadows at 9:18 am

    We chronic pain sufferers should have had a set at the table long ago.We will only get worse if our side is not heard and why have the so-called doctors of our community not been apart of the WH discusion?Our president needs to hear all sides of the story not just parents and junkies who use the system! THANK YOU,LESLIE

  32. Granny at 9:13 am

    Great letter. Can hope they bother to read it. So many foolish commissions to ‘manage’ a symptom without consideration of root cause. No scientific method. No inclusion of the affected. Wonder if any addicts were consulted or only addiction professionals?? Quickly, the pattern and intent become cllear.

  33. Cameron Cooper-Werthmann at 8:41 am

    Thank you for speaking for SO many of us. I and so many fear that the ‘solution’ to the opioid crisis will create an entirely new problem for those of us who follow our doctor’s treatment plans to the letter. I, too, have never misused any of the medications I am prescribed. I have suffered with CRPS for 18 years and, like you, had every diagnostic and therapeutic test/treatment under the sun. I do not understand how this commission can issue recommendations without input and research from the chronic pain community. We will be directly impacted by these recommendations and as I am sure many of my fellow pain warriors already know, we already experience how our doctors’ expert opinions and recommended treatment is affected by fear of governmental action. How many of us have had their opioid treatment altered/reduced for no other reason than to avoid governmental threat? I would welcome the opportunity to join you in this dialog as well. I fully support the work to curb illegal opioid use and abuse. I only hope our leaders will take a comprehensive informed approach so those of us who require opioid treatment to have any quality of life don’t have our care threatened.

  34. Ibin at 8:14 am

    This letter is very revealng as to the plight of the patient with pain that has…..tried alternative treatment after surgery and alternative treatment can help but, there is a level of pain that reaches an intolerable, consistent, point that only opioid medication can manage. The “ignorance” of the experts placed in the chair to oversee the best solution for an issue amazes me. Just because those in the chair don’t have the issue that is being debated, then it don’t exist or the people, patients that are affected basically have no say in the matter. Rediculous, those in the chair position are appointed to adress BOTH sides of an issue. Minds are made up without realistic testimony from the ones most affected. I have wrote all my Washington representatives, all state political representatives, and medical representatives in my state since very early 2017 and offered any insight …..as a 23 year successfully treated patient with opioid medication but, apparently my, our, position in the matter….don’t count. People, patients thrive on self sufficiency in some manner, some more than others but, again to be forced into “disability” jsut don’t register with the chair people as a negative.This determination to reform societies morality, or whatever the true intent is concerning the “opioid crisis” by DOT/GOV is causing havoc. We live in a nation where the elected have prepared, literally, to govern through ANY issue, disaster, and situation whether the people are protected or not. Well done letter.

  35. HAZZY at 6:20 am

    I’AM IN THE SAME BOAT AS YOU, NO ONE UNDERSTANDS CHRONIC PAIN AND WHAT IT DOES TO YOUR LIFE.

  36. Vicki at 5:48 am

    I’m a person with chronic pain who also has to use opioids so I can perform the simplest of chores like grocery shopping and cooking meals. I avoid telling anyone I have pain or that I take medication because I’m embarrassed.
    Just about everyday I hear about the opioid crisis. We need commercials showing actual pain patients! We need to show the country what normal, responsible pain patients look like. We’re the people trying to live and interact with our families, trying to cook our own meals and love our grandchildren. I’m worried because I would be house bound without my medication. Please, we need to show our country responsible pain patients.

  37. Joseph DiCapo at 5:33 am

    Great letter! Ive been trying to let this issue be known to every politician who is currently practicing medicine without a licence. Sadly most dont seem to want to hear it. It is especially sad to me that my Republican party seem to be using this as a political issue. They never look at the fentanyl coming from china and smuggled through or pressed into pill form in Mexico. They all seem to think that when elected they also received MDs and know what is best (again sad to see my party which believes in small government doing this). I too am a chronic pain patient who NEVER has abused or diverted medications i use to live a small part of my former life. I have run the gamut of non opiod therapies. Some work and i incorporate them in my daily life. Sadly they alone do NOT bring much relief for longer then a short time. Ive been treated like a drug addict by pharmacists that i literally have educated myself more then. I have on numerous occasions made them look very stupid which does not help matters but i refuse to let them treat me like less of a human being because of the medication i need to take. I take my pain management extremely serious. When i made the decision to accept my need for opiods i told myself “you are too smart to become a statistic”. I educated myself on my condition and medications as much as possible. Numerous physicians i have seen have been EXTREMELY impressed by my knowledge. But yet again government knows best. Living with the stress of this is almost as bad as my daily chronic pain. Everytime i see a segment on the news about opiods i am literally screaming at the TV between their lack of knowledge and also questioning why there is never a story about the 9/10 who use opiods as directed without issues. I am almost at my whits end with this BS and its sad i have to live in such stress. The one point i want to drive home to politicians is… which would u rather, junkies overdosing who will get what they want no matter of any regulation you pass, or good people who never had issues with their medication committing suicide because you thought you knew best? You cant have both politicians and if you throw down some blanket legislation on opiods your going to see mulititudes of needless suicides committed blaming you. That won’t help your relections and will be the most sad part of all of your ignorance. I pray to god this will get through their thick skulls but i highly doubt it.

    But all CPP must still fight for our rights until they are taken…

  38. Cynthia S Ralls at 5:25 am

    Count me in!
    * 58 Yr Old Granny In Disabling Pain Since 1999 (If Not Longer!)
    * Certified Permanently Disabled Since 2003!
    Chronic Pain IS A Disability & Chronic Pain Patients & All Human Beings Have #AHumanRight2Relief! #NothingAboutUsWithoutUs! #CripTheVote2018!

  39. Byron Hood at 4:54 am

    Andi, I’m in Houston. How may I contact you? Thanks in advance.

  40. Robert at 4:41 am

    Thank You. I fear that we have passed the point of No Return and are now in pure emotion stage. When America gets in this stage it almost always follows the path of least resistance and in this case that will be almost no out of hospital use of opioids. Your letter at least puts it in a good perspective.

  41. Brenda Malli at 4:05 am

    Thank you Carole for your letter. I too am one of the many people you speak of and like you don’t want to have to depend on opioids or any other medication for that matter. The last two years, trying to attain any semblance of life has been the most inhumane frustrating experience of my life. Many mornings upon waking, I would find myself sobbing because I had to face another day of pain. Until the pain from an unnecessary surgery that I was scared into having by a greedy selfish doctor, I was a strong woman who had accomplished whatever I set my mind to. Many more people die each year from medical errors than from opioids. If we use the logic that the mainstream media is basing the war on drugs, then we should begin a war on doctors, alcohol, and why not auto makers as well. We have all had family or friends that have misused opioids. We have all had our hearts broken as we watch how it effects families. I just had my 45 year old neighbor overdose on Meth and alcohol and he was an only child. He told me that he had no chance from the start. He lived the first seven years of his life over a bar called Satan’s Den. I tried to reach him before it was too late but to no avail. An addict has mental issues. I as a person in chronic pain wants to live, not die. But we need relief from our pain and so far, opioids are the most helpful.

  42. Sheila Leys-Garcia at 3:16 am

    I hope with all my heart that he takes the time to read your letter but I think the Governments agenda is to cull the disabled from the population. Much the same way the Nazis exterminated the mentally handicapped and physically disabled in the 1930’s. More money in the Social Security coffers for them to squander then.

  43. Teresa Chalk at 3:01 am

    VERY awesome!! I too will send him my pain story.

    Many prayers *hugs*

    Teresa Chalk 🙂

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