My Story:  Chronic Pain Patients Speak Out

My Story:  Chronic Pain Patients Speak Out

By Ed Coghlan.

The National Pain Report is asking patients to share their stories this month, which is Pain Awareness Month.

We’ve received a number emails from people who are frustrated with the crackdown on opioid supplies, believing they are using them responsibly.

Rita Kimbrel is a 57 year old neurogenic pain sufferer whose problems began in 2003. Like many chronic pain patients, it took years to get a diagnosis with many procedures that didn’t help and now is hurting again.  Also like many chronic pain patients, the impact on her finances and her family were life changing, and not in a good way.

“I made it this far. I’m not ready to die yet and some may I will get oxycontin back so I can function,” the Pennsylvania woman wrote. “Not even my best friend knew I was taking it.”

For Karen Christensen, a 70 year old retired nurse in Florida says her activity has been curtailed.

“I recently climbed 321 steps at Talula Gorge Falls in Georgia. I can do things like this if I have my pain medications,” she said.

She also said that she wrote Florida Attorney General Pam Bondi and complained about the opioid reaction and the pills mills that are still operating.

She never heard back.

Ralph Maddox was injured when he was unloading a chemical tanker truck in 1992. He said he is dumbfounded by the CDC.  He blames the Veterans Administration for making things worse. He’s been taking opioid medication for 20 years.

Hayden Hamby is a 59 year old native of North Carolina, who has been suffering with “continuous, personal pain since he was 35.

The licensed general contractor has endured numerous procedures that have not been able to work as much since the CDC Guidelines were adopted.

“I have written to the North Carolina Medical Board so many times that I no Longer get a reply,” he wrote.

He also mentioned an item which frustrated chronic pain patients in many states. The North Carolina Board told him that their guideline should not interfere with Hayden’s ability to receive proper care.

“What a lie,” he writes.

Cheri Fur of North Carolina who says 18 years ago she was operated by a surgeon convinced she had a tumor but she work up in extreme pain.

Later she was diagnosed with CRPS.

“There is no alternative for opioids for me. I’ve tried everything else,” she writes. “Travel and golf lessons after retirement will never happen.

I have no hopes or dreams.”

The National Pain Report is interested in hearing from you. If you have chronic pain and have a story about how you are dealing with it, we’ll consider running it as a blog or as part of a story. Send them to editor@nationalpainreport.com.

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Authored by: Ed Coghlan

There are 22 comments for this article
  1. Cherie LeClair at 3:54 pm

    I am a chronic pain sufferer for 23 years. I am 53, and I know I while not be cured. I am trying to stay out of a wheel chair, live independently, and care for my mother. if I am having a good day, I can sit for 6 hours off and on. I can never travel. I happy day for me is painting or visiting with friends. I was diagnosed with severe scoliosis at 11, and first full spine fusion at 13. those rods held for 17 years. at age 30 they failed suddenly and set me on a course of many spinal surgeries, cancer, Epstein Barr, pancreatitis, heart failure. I have only needed pain medicine daily in the last 10 years.

    the FDA just pulled the one that worked best, OPANA ER. so this week, I am on another, the pain clinic recommended. I am in a great deal of pain, my legs do not stop twitching with nerve pain, my neck is in so much pain, I can not lift my head.

    the story continues, in that, I have to care for my very sick mother. I left my home in SC, to stay with her in MA to care for her 2 years ago. she has battled many infections, is a great fall risk, etc. she spent July and August in and out of hospital and rehabs. she wears a 5mg patch of Butran for all over arthritis. it keeps her somewhat mobile.

    into her second rehabilitation after kidney failure, heart failure in August, the doctor did not recognize the patch. she had just come out of a coma, and could not give a good history. so he proceeded to accuse her of being “one of those” oxycontin addicts, and he pulled the patch off of her arm, saying he never wanted to see another patch on her again. she could only mutter, “no it is not that”.

    I arrived about an hour later with her clothing and heard what happen. I called the doctor, which he admitted to what he had done, and I shamed him as much as I could, about what Butran was vs oxycontin, and how cruel it was to put someone into withdrawal just coming out of acute kidney failure, heart failure. I proceeded to put the orders in to pull mom out of Maplewood Manor, in Amesbury, MA that night against medical orders and brought her home the next morning.

    When I took her to the pain clinic last week for her follow up, she can not get any pain care, for her bruised up back, injured shoulder from her recent falls. the doctor wanted things to settle down, and see how things were in a few months. so she lives in a great deal of pain. she went into another UTI this weekend. she told me no more hospitals. that she is done. we contacted VNA palliative, her primary and informed them to get hospice.

    neither my mother or I have ever had any history of addiction.

    God Bless, Cherie

  2. J. A. Martin at 12:12 pm

    Not that persons in chronic pain should have to but at this time, we must take back our CIVIL RIGHTS that are being pulled from under us.
    We have inalienable constitutional rights, life being first, along with pursuit of happiness.
    Living in daily pain does not permit these to be exercised.
    A legal spokesperson is needed to address this to the courts.
    I’m onboard with any/every one who also feels we, as a group, need to play hardball with these agencies who are literally killing us.
    I am so frustrated. I’ve contacted my state reps and plan to continue untill I receive a direct statement from them that they are listening and plan to help.
    Any help is needed STAT. We are victims obscured statistics.
    That’s all for now. I plan to post again to give details of my history with chronic pain.
    Stay strong. This is one huge governmental mess. Fear tactics are becoming laws…

  3. Debra McDonald at 9:01 am

    These comments need to be read by folks that can do something about this! We all know pain and how our lives are being altered by our government. How do we get THEM to hear us?

  4. Jo Hale at 5:27 pm

    I am a fellow chronic pain sufferer and will eventually share my story of how I came to be here and why I believe we must unite and fight this madness together. Our voices need to be heard collectively if we are going to make a difference. I came across an online story regarding the opiod crisis and I emailed the reporter to ask him a few questions. Below is a quote from his response. I thought maybe someone here might be interested in contacting him. He did mention that you’d have to be comfortable being quoted by name. His email address is at the bottom. I hope it turns out to be helpful.

    He wrote on July 24th, 2017:

    “one story I’d like to do relatively soon is about people who are taking pain medication for legitimate reasons yet have experienced discrimination or shaming by friends, relatives or medical providers.”

    Don Sapatkin
    Health reporter: addiction and mental health

    The Philadelphia Inquirer
    Philly.com Health & Science

    dsapatkin@phillynews.com

  5. Jodi at 12:26 pm

    I am a 42 year old woman, who is basically in jail at my home. I have been diagnosed with Fibromyalgia many years ago and also have terrible osteoarthritis. A few years ago I underwent knee replacement surgery on my right leg. Somehow after many months of painful physical therapy, my therapist said you need to go see a new orthopedic doctor. When I saw him, within a week they found out that I had an infection in the new replacement. So after 5 surgeries to get rid of that infection and to try to help me not be in horrid pain, I am in constant pain, I have rsd in my leg from the multiple surgeries. My leg feels as if someone is frying bacon on it along with the constant throbbing inside of my knee. I have fallen multiple times because my knee gives out. One of those falls I tore my other good knee’s patellar tendon and broke a bone where the tendon tear snapped and hit. No doctor will touch that knee for fear of the same thing happening. I have recently been sent to a pain management intervention doctor who is doing lumbar sympathetic blocks to try to help with the nerve pain. It has done nothing yet. My regular doctor prescribes me medication, but only enough for about 12 hours a day and he is afraid to increase the dosage or give me more a day. So I have had Lyrica, then became allergic, then gabapentin which I was allergic to within a week. They have tried Cymbalta, which made me feel like I crazy and then I developed brain zaps, so they tried effexor, which is almost another brand of Cymbalta. I had no change, so they tried Savella which I could not afford. Now I have been on Pristiq for a couple months. So far I still have the brain zaps along with dizziness. I am unable to take ibuprofen anymore because of the multiple ulcers that it caused. I understand that there is an opiod crisis, but why take away medications that actually help us?

  6. Diahn Escalante at 10:16 am

    Letter to Merkeley 7/12/17 (No response)

    To be clear, chronic pain patients and opioid addicts are two distinct groups, both of which deserve care and support. Treating pain patients as addicts can lead to denial of care, which may actually increase the number of opioid addicts.

    I am a 17+ year compliant chronic pain patient. 2 failed back surgeries with fusion, hardware removal and finally laminectomy. Without the medication I have safely used for over 15 yrs., I would have no life. At at 49, I have tried ALL of the alternative options and chose to have no further invasive procedures done to my body. My opioids give me a semblance of life. I do not feel high. I am able to get up and do things like a "mostly" normal person.
    I have extensive medical records, showing the degenerative nature of my disease. It WILL get worse as I age. There are other things chronic pain sufferers do to relieve pain. In an effort to distract ourselves we meditate, pray and have hobbies like polymer clay, cross stitch and reading. We do many thing to take our minds off of our pain, We attempt to stay positive even when it feels impossible. A short relief from pain helps. Pain medicine helps us function, at least for a short time, in a way that most people take for granted. When our pain is adequately managed, We are not holed up in our houses with the drapes closed, clock watching our next dose, or crushing, snorting or injecting our drugs. WE WANT TO LIVE!
    We CPP's all agree that there is a problem with opioids. There is no reason that any patient who has a tooth extraction, broken arm or acute short term injury, should EVER receive more than a 3 day dose of meds. That is acute pain, expected to end in a short period of time. We CPP's don't have that luxury. We are broken, damaged and not expected to heal. The damage has been done, and age will only exacerbate the problem. We are responsible, we are accountable, and most of all…we are human, and deserve to be treated as such.

  7. Jenny at 5:20 am

    I am now 49 years old. I have had Fibromyalgia since I was 18. At that time it wasn’t to bad exercise and being younger helped but I also had migraines very bad and only got at that time Tylenol 3’s (codeine with Tylenol). I have had migraines since as long as I can remember. For the Fibro I was prescribed an anti inflammatory medicine and muscle relaxers. I have been diagnosed with bi polar, major depression disOrder, anxiety disorder among quite a few other things they tried several antidepressants and I never felt really that good. Either they made me too anxious or I felt like a zombie. Not only diagnosed with mental issues I have carpal tunnel still have my migraines, chondromalacia, patella, insomnia, ptsd, sleep apnea and several things other problems. I have three children now. On my last pregnancy (he was born in 1999) , something went terribly wrong after about 9 hours of labor. My placenta and uterus ruptured and I was in for an emergency c-section immediately. Luckily both of us survived.
    Since that time I have been fighting chronic pain in right hip,back mostly. Y entire right side, it is now down my leg and I have lost some feeling in my foot and leg and feels like pins and Needles or constant ache, all the time. My doctors at first had no problem giving me my prescribed medications as long as when you are on them your urine testing comes back good(ex: OxyContin and oxycodone)which worked wonderful especially I thought the OxyContin. It did not make me groggy or sleepy and it actually took the pain away for the 12 hours they told me would! I have seen at least 30 doctors with no help. I have had so many tests without a definite diagnosis, it’s been beyond frustrating . Its been trial after trial with different medications such as methodone,kadian, and a few others. When everything changed, I was pushed into a pain clinic. The pain clinic told me it was my sacroiliac joint that was bad. I tried pt, swimming in warm water with a therapist, chiropractor and injections after injections all of which they told me work! May have helped a little in the pool. But not enough. I also had exploratory surgery,gall bladder, appendix removed and a gonadal vein resection all of which they thought was the cause of the pain as well. Didnt help. I was having a lot of pain! Sitting, standing and walking all became difficult for me. I had to rely on others to help, which I just hated to, but had too. Then one day at the pain clinic they told me my urine did not show what they had prescribed. So just like that, it was completely stopped. I told her to retry another one , but no that was it for me. I was taking my pills as directed and some days I didn’t need as much or if I even needed any that day. Which may have been when they did the urine screen idk. At that time they gave me a Butrans patch which gave me extremely bad headaches but seemed to help at least a little during the day. Definitely not the whole day though. Funny thing is I have taken many of your articles and printed them to show them about false positives, chronic pain etc. The clinic doesnt believe or won’t take the time to even read that. When I came back to the pain clinic and time for my urine scan again it did not show the butrans either. They let me stay on it and it never showed in my urine. Then I went to Tramadol ER. They are every 12 hours, (yeah right ) I only had maybe a slight help until about 2-4 hours after that. Then she prescribed help with the short acting tramadol. When I was on the oxycodone that HELPED the pain. Made me feel at least I could do a few things around the house and I love to garden too. So while on the oxycodone I actually got to do things I loved. I even went back to work for a couple years but after working on my feet 8-10 Hours a week my legs and hip, back just couldn’t take it. Work put me on lower hours but my dr. Had put restrictions on me 15 min. Sitting 15 standing and 15 walking and they could not accommodate for the restrictions. So I had to leave. I’m in so much pain now because they only give Me tramadol and gabapentine. I am on other meds for sleep, anxiety and my bipolar. But none that help with pain.

    I hate that people with chronic pain are blamed for the heroin and/or any other opiate related deaths. We are all not the reason for this! I would never even try to do any of that. So to take all of us and put us in one group it’s completely unfair. I’m so tired of hearing that. The one thing that helped me feel somewhat human and able to do things has now been taken away so now I have to apply for disability because I am unable to work.
    They need to include chronic pain patients into all of those studies or doctors who are actually involved in pain and knows how we feel! Like I said it is beyond frustrating and ridiculous!!

  8. Victoria A. at 12:23 am

    I think we must stand up for ourselves, as we too deserve to live a quality life. Opioids help, bottom line. Those who say otherwise do not have chronic severe pain, and those who support alternative ways of therapy like Yoga are delusional. How can we do things like Yoga when we cannot even move from our beds…and not to mention Acupuncture, Dry Needling, Physical Therapy, and Massage, especially when you have Fibromyalgia, as your skin and muscles feel so sore & burn that it hurts to even be hugged, not to mention taking a shower is the most painful thing to endure.

    I’m only 29 years old, and pain has ruined me. I’m unmarried, still live w/ my parents, who also have chronic pain, my dad who is now 67, works full time and is the only one who works. I live in Madison, AL wh/ is in North Alabama next to Huntsville and Redstone Arsenal.

    We are a good family, an ARMY family, my dad is a retired Major who served for 20 years in the Army Corps of Engineers as a Combat Engineer. He was exposed to Agent Orange in Vietnam, wh/ caused Prostate Cancer, and my older sister (33) to be born w/ Spina Bifida Meningocele and Tethered Spinal Cord Syndrome. The military just passes it off, and treats my dad like an obsolete number. Just like they do countless other veterans who have served and fought for their country and deserve the best medical treatment possible. I read a sign in the VA when I went there w/ my dad the other day wh/ made me want to rip it off the wall…it stated that 1 of 4 chronic pain management patients are addicted to prescription opioid medicine…what crap! They had no reference listed as to where they even came up w/ those statistics.

    I have Fibromyalgia, Psoriatic Arthritis, Psoriasis, Lupus (SLE), Ankylosing Spondylitis, DDD-Lumbar, Thoracic & Cervical, Restless Legs Syndrome, Endometriosis IV (I even had to have a Salpingo-Oopherectomy where my left ovary and fallopian tube were removed at the age of only 24), Interstitial Cystitis, Bursitis, Lumbar and Sacroiliac Joint Dysfunction, Osteoarthritis, Knee Pain caused by arthritis, wh/ I’ve had four surgeries on and need another one b/c the arthritis is so severe, Narcolepsy, Social Anxiety and Panic Attack Disorder w/ Agorophobia, along w/ a number of other disorders that I could go on about forever!

    I see and have seen multiple specialists, including a Rheumatologist at the Cleveland Clinic and my regular one here in AL, a Sleep Specialist, several Psychiatrists (I finally found one who is sympathetic and treats me very well), several Psychologist(s), including a Pain Management & Sleep Medicine Psychologist, a Counselor/Therapist for Behaviour Modification, a Pelvic Pain OB/GYN in Birmingham, a Urologist, a Urogynecologist for IC, a Pain Medicine and Rehabilitation specialist, an Orthopaedic Surgeon, a Neurosurgeon, several Neurologists, four pain centers, and so many others.

    From 2012-early 2015 I was a patient at the Alabama Pain Center in Huntsville, I was treated well, until late 2013 when they got rid of their competent doctors and Nurse Practitioners. After that I never got to see a doctor, only twice, the rest of my appointments were w/ nurses and a PRN. I decided to be referred to one of their CRNP’s that specialized in Psychiatry…it was the worst mistake I’ve ever made…she treated me like I was the scum of the earth, she never greeted me, put me down, told me that she had worse patients than me, and caused me several panic attacks in her office…no tissues were ever offered and she just sat there at her computer never asking if I was okay, or even looked at me.

    Well, she scheduled me for 3 appointments in one day, they were w/ the nurse for refills, the CRNP herself, and w/ a Social Worker for coping skills. Well, I didn’t show up b/c the day before I ruptured an ovarian cyst, and along w/ a CT-Scan that was deemed an emergency, I also had to get a breast ultrasound and mammogram. My OB/GYN said that he thought I might have a tumor in my breast and another tumor in my ovary. Me being worried, having panic attacks all night, not sleeping and having Narcolepsy, and being in significant pain I just could not make it to these appointments at 8am w/ my pain center the next day. So, the consequences were $160.00 in No-Show Fees, a red-flag on my record, and the CRNP reported me to the Medical Director, thus all the clinic nurses & doctors had a meeting about me and decided to give me a warning about missing or being late for another appt., and my pain medicine (OxyContin 20mg, 3x/daily w/ Percocet 5mg for BTP) was cut in half by 32.5mg, oh and my Clonazepam was taken away, too, w/ no warning, no weaning me down, and no explanation, just simply taken away from me.

    Thus, my pain and anxiety was undertreated and I became very ill. The next month, I was 20-minutes late for an appt. b/c of the check-in line, and I was accused of being non-compliant and was discharged from the pain center! The letter stated that I consistently missed too many appointments and was late too many times to be a patient any longer. So, I was once again not weaned off my pain medicine properly and for months
    I suffered until my dad decided enough was enough and HE asked my Primary Care Physician to take over my medicine. She did, and gave me Percocet 7.5/325mg (4x/daily), wh/ was fine w/ me and put me back on my low-dose Clonazepam, too. She saved my life.

    Until recently, when she did a UDT and I was positive for Methadone! However, I was not informed until 25-days later at my next appt. in July, giving me little choices in options. I was given the test results and a letter saying I was going to be discharged for Drug Diversion. She hasn’t discharged me, one b/c I’ve been a patient w/ her for 9-years and she is a good person, her nurse however is unkind.

    Anyways, I explained to my doctor that I did NOT take Methadone and that I was willing to do anything to prove I was innocent and this was a False-Positive. I told her I would do a blood test, a hair test, and to please have my UDT confirmed by GC/MS, which was never done. I looked at my test results closer, and noticed that the UDT was only tested by an EMIT Assay giving only Preliminary Results. With positive results a GC/MS Confirmatory Test is suggested b/c of the consequences to the patient…it’s now September and nothing has been done. The reason, she agreed to a blood test, but no lab around here will do a confirmatory drug screen on blood, and the nurse said that she’d have to do research and find one that did. Well, after FOUR more weeks of waiting, and time being waisted, I called 17 labs, and found 3 that will do them. So, tomorrow I have an appt. w/ my doctor, and will once again point out these were preliminary results and a GC/MS should be done, and I will also tell her I found labs that will do the testing. I’ve talked to my Psychiatrist, Rheumatologist & Pharmacist and showed them the results and they all agreed w/ me, and pointed out that I take a lot of different medications that could have caused me to test positive for Methadone.

    My concern is that it’s been since June 29th since my UDT, and blood tests have a short time limit on what they can detect after one month. However, a hair test can show up to 3-6 months. So, we shall see what my doctor will do, however, I know no pain medication will be given to me until my results confirm a False-Positive and if my doctor agrees to treat me again w/ opioids.

    My point is that I’m uncomfortable to the point that I feel I’m suffering from this severe pain. And, I’m tired of being treated poorly b/c I have chronic pain (especially Fibromyalgia), and my young age is an issue, too. I’m just so tired and want my life back, at least I want a chance to feel well enough to complete my Bachelor’s degree in Geological Sciences concentrating in Planetary Geology.

    Before I was diagnosed w/ all this I was a Student Pilot, and was two weeks from getting my Pilot’s License, went to college full-time, had boyfriends, friends, a good and decent life. But, I ruptured an ovarian cyst whilst moving my Cessna-172 into its parking place, and had to have an emergency surgery to remove it. Then, my OB/GYN put me on Lupron Depot and it triggered Fibromyalgia, and all of the above crap. It’s been since August 2008 since I was on that stuff and I’m still having side-effects…I did try to continue flying afterwards, and continued college for a few years, but I was not able to continue…

    I apologize for this long comment, and if I gave too much details, but I just wanted to tell my story, as this is the first time I’ve ever done so. Thank you for reading and listening to me.

  9. Leslie Meadows at 7:46 pm

    I have read all the comments,this is up to the federal government not the states.When the OD deaths went up & the parents testified along with doctors our fate was sealed.Along with pot the drugs will (once taken off the market ie Opana) will never be never be back except for break though pain after surgeries.They control our fate.My question is how can big pharma afford this?Government subsidies & new cancer drugs that will be approved by the fed.So it’s a slippery slope, in the few years we will be in alot of pain,some of us will kill ourselves,some of us will use black market drugs & some will move to a more civilized country. See ya’ll on the other side,Leslie

  10. D. I. S. May at 6:16 pm

    Surgery is a terrible option quite often, not always. No more for me, despite needing two new hips and a left knee. Similarly I refused a second CMC reconstruction. Well, a third. I had two on my right thumb: I got hyper-algesia from the most painful procedure conducted by the world famous hand surgeon I use. He did not tell me it was the single most painful procedure. I thought I had RSD. AIR hurt my hand! The right knee replacement surgery was okay. But I got hyper-algesia again, a third time. Moreover, after one surgery, I frankly don’t remember which, I started theta-streaming while driving home at night. That is not okay. I know, because I know my body, that the anesthesia , over time and repeated administration, is changing my central nervous system. I’ve heard some people never return to consciousness ‘the same’ again. My theta streaming stopped with time and the will. I came out of cancer surgery in ‘fight-or-flight’, i.e., in a trauma reactive state. Only the reptilian brain needed. I was injected with a tranquilizer which sealed it: I got PTSD in surgery. That was lots of fun. No one in the region in which I live knows a single thing about the somatic theories of trauma. I had to research my symptoms, consult with three specialists out of the region to locate one practitioner in the region to treat the trauma. I strength train every week, for 30 years. I would not consider giving it up. I also use hormone replacement therapy. I have every risk factor for osteoporosis. No way do I stop lifting weights and taking hormones. Not a chance. (I went to a boutique practice for optimization of various blood levels to get the script for hormones.)
    I think speaking out and asking for help is good for us, practiced safely. The government is the perpetrator. I cannot imagine the government doing anything but additional harm. Politiians dance for dollars. Got 800 billion dollars, anyone? That’s about what it will take to compete with the actual power brokers, who are not chiefly in elected office; merely calling the shots. Lethal injections are the nature of the shots getting called. Increase poppy production 400%, then blame pain medication for increased heroin deaths. Yep, makes sense. That is our government protecting those poppy fields, folks. US soldiers, doing their jobs. For the people calling the lethal injections on people who are citizens of the United States. Anyone who watches television, or pays attention or is in earshot of paid for programming is a fool. That is the route of administration for much lethal injection. You don’t feel a thing while you are being entertained. You just get the message delivered to your implicit system of cognition; you know, the one that produces your sentences grammatically while you say what is on your conscious mind. That system of cognition. The method for manipulating that system got into the wrong hands, hands also filled with money. Stay away from broadcast media paid for by anybody you do not personally know.

  11. Heather at 5:25 pm

    I am a nurse who has been unable to work since 2015 due to my many autoimmune diseases such as Ankylosing Spondylitis, RA, Immunodeficiency- which is new but not- just diagnosed hypogammagobulemia, which explains why I’ve always been sick most of my life off and on with upper respiratory and sinus infections, pneumonia, bronchitis, etc, I also have severe fibromyalgia with myafaciial pain syndrome, neuropathy, multiple bulging disc in my cervical and lumbar spine as well as osteoarthritis in entire facets of my spine, both shoulders and clavicles, right hip with osteophytes, left knee, both hands, osteophytes on my thoracic spine, DDD, spinal cord abudded from bulging disc, spondylarthritis in C23456 and L2345 and Sacroilitis as well bursitis in my right hip, carpal tunnel in both hands, IBS, Gerd, Esophogitis, I also have bad kyphosis or humpback already and lordosis in lower back, and sure there is more and it took me over 15 years to get diagnosed as they kept saying my pain was from me playing sports and competing in gymnastics when I was younger. I knew something was wrong as the pain was horrible in my teens and when I had my son at 21 it got really bad. I suffered thru it mainly. Then about 5 years ago saw sports med and got injections that failed and he referred me to rheumatologist who finally did bloodwork and diagnosed me with AS on the first visit by symptoms alone. But I did come back positive for the HLA-B27 gene and Xrays confirmed it. So treatment started and biologics along with therapy. I couldn’t take biologics as ingot pneumonia 2 x even with prophylactic antibiotics and with MTX my hemoglobin dropped to 9 in a month and the Dr couldn’t control my pain so she told me “you are too complicated” and referred me to pain management. Which I still see. I got a 2nd opinion by Mayo rheumatologist in 2015 and he documented I had severe fibromyalgia and AS and nothing more to do. So still with pain Dr. Nursing was my life and my passion and as you know it is very physical lifting patients a lot and med carts are huge and heavy. So I just couldn’t do it anymore. Well I had a hysterectomy in 2015 and it did me in. Then and of 2016 pain Dr sent me to oncology due to abnormal MRI and found all my IgG are low and have no immune system so now seeing immunology and waiting to see if I’m going to be getting IV IgG infusions and now have a good rheumatologist who believes in AS and fibromyalgia so last week started on new med and hope it doesn’t wipe me out again. And oh finally about pain meds. I’ve been on Morphine ER 30mg daily for 3 years and now 3 months ago my pain Dr said he is taking all his patients on ER meds off because he will not have the government in his office. So Drs are afraid. And as a nurse I asked him what was he gonna do when his patients end up bedbound or in wheelchairs or worse-suicide as they are soaring in the pain community? He said I don’t know but I’m not going to deal with them (referring to gov). I said this isn’t fair. We are the real pain patients and this is caused from heroin and fentanyl. He said I know but we are being blamed. So now I’m still being weaned. Last month I was suppose to go to 15mg which I’ve been on for 3 months now to 2 weeks then off but my pain was off the charts so he kept me on 15mg daily for another month. We shall see but this is totally inhuman and wrong. FLORIDA also by the way. All of my disorders are hereditary as my mom, grandma, incle, and cousin all have AS, fibro, osteo, neuropathy, and back problems. I also refuse to go to any ER here. They will automatically refuse to see you if you see pain managment and want do any testing at all. It has happened several times with severe symptoms one being me unable to walk and my husband had to carry me in. No testing nothing. Discharge and wouldn’t even let us use a wheelchair. My Dr called and reemed the Dr and wanted me to go back and I said NO I am not an addict as I was accused of I am a patient who needs to know what is wrong with me and a medical professional as well and refuse to be treated that way. I did file a report. Our local congressman wants to speak with me as I continuously wrote all agencies, so I will be doing that in regards to pain patients and how we are treated or rather no treatment. Feel free to use any of this if you want. I am also a huge advocate for many organizations and pain amabassador with US Pain. We must Speak Up, Stand Up, Let Our Voices Be Heard and contact and email all local representative and federal governments including the President and the white house repeatedly. Only we can make a change. And remember to BE YOUR OWN ADVOCATES!!!
    Thanks
    Heather McCollim

  12. Laura at 3:19 pm

    I had severe chronic pain for almost two years due to broken orthopedic hardware in my pelvis. Every step was agony and there was no relief in sitting or laying down either. I was prescribed Oxycontin and then MScontin but the dosage was far from enough to make the pain manageable. I was treated with suspicion by my doctor so I was too afraid to ask for a higher dose. It was obvious that I was in horrific pain but she didn’t care. Others told me that my face was gray, I limped with my head down, and never smiled.

    I finally decided on a risky surgery that could have damaged my bladder and had the hardware removed. Within a few weeks, the pain was completely gone so I didn’t need opioids anymore. I weaned off 160 mg/ day to 0 in under six months. My surgeon allowed me to control the weaning pace, even allowing early refills of a day or two when I was overly ambitious with the taper. Because of this, the only withdrawal symptoms I experienced was yawning and watery eyes. It was shockingly easy compared to when I tapered off of Lyrica, which almost killed me.

    As so many of us know, under treated pain is literally torture. No amount of PT, meditation, TENS units, over the counter meds, prayer, positive thinking, etc. reduces the pain to manageable levels. We don’t expect no pain but above a certain point, life becomes hopeless and not worth living. For the lucky ones such as myself, when the pain goes away, tapering off the opioids is easy.

  13. Kim Applegate at 1:57 pm

    I guess I’m lucky , I’m in Cincinnati , and my Pain Management Dr . has not cut my dosage . Being as he has followed the guidelines set by our illustrious Govenor , which is my record is coded with my Dx. And why I’m taking the meds . I’ve been on just about every Opiate known to man with the exception of Oxy and I don’t want to go there . So I’ll stick with my little dose of what I take and just suck it up . Yes I think the laws are designed to punish those of us who depend on the meds to have some quality of life ,but it’s pretty much out of our hands thanks to those who choose to abuse it .

  14. Ruth at 1:47 pm

    Recently moved from Houston TX – now flooded with so many people devastated by their losses. My physical pain seems minuscule compared to these people’s – at least I have a home and now live in PA. Still, I cry for TX.
    I was born with congenital fusion of my odontoid (actually just a peg), C-1, C-2 and C-3. Have never been able to fully rotate my neck yet I grew up normal and never knew of my ‘defect’ until I was 45 – that’s when the pain started. In the years following this deformity, both arms had lost strength (I was a nurse) and tingling down to my finger tips. Had surgical fusion of C-3, C-4 and C-6. Stopped tingling but more stiffness and had to quit my job. With fusion more strain has been placed on my spine plus I have a very narrow spinal canal. Yes, some of this is genetics but is it my fault I was born this way? As I age (62) the pain caused by my wonky spine only gets worse. Of course there is osteoarthritis in my spine.
    In Houston I had an intelligent and empathetic doctor. I told her from past experience I did not want to be on hydrocodone so she put me on Tylenol 4, a schedule lll drug. I never had a problem filling my script as I took it as prescribed. Never took my pain away totally but it took the edge off so I could function.
    We moved to Erie, PA this year and I find out docs won’t even give you an appt. since I had to tell the front desk my meds. After two days or so, front desk calls me, telling me doc won’t take me bc of Tylenol 4. This happened FIVE times while in search of new doc! So stereotyping and frustrating and made to feel like I was less than human. Such cowards these mds as they wouldn’t even see me or talk to me but let their front desk personnel deliver the message. I know ‘don’t kill the messenger’ but regretfully I lost it on the fifth one. Long story short, I did apologize.
    So, Hypocratic Oath, all docs must swear to states, “do no harm.” What the heck do they think they are doing by denying seeing a new patient and dismissing them because of the term, ‘controlled substance?’ Making them feel better? I was in tears not being able to find a doc, being labeled a drug abuser, junkie, dealer in my head. My doc in Houston was willing to fill my script but I knew I had to find a doc here. I finally did, and not only is this doc empathic to me as a patient but is offering other alternatives through colleagues.
    Anyone a Game of Thrones fan? Remember Ygritte? “You know nuthin’ Jon Snow?” Well CDC from me, “You know nuthin’ about people in chronic pain like me!”

  15. Thomas at 12:04 pm

    I am outraged that our government is In my doctors office . I have been on opioid treatment for 17 years and never once felt the need to stick a needle in my arm , however my pain is worse these days because doctors are compelled.to prescribe less than I need to make a burecrat happy. The hysteria over opioid is based on heroin and heroin should be the focus not chronic pain patients and their doctors. The hysteria is also about money . FAR MORE people die every year from tobacco and alcohol but yet our leaders just tax that. We need the “Chronic pain patients protection act ” to.wake these people up that their are those in these medications that are responsible and can not live our lives without it . Witbout the medications i take i would. It be able to work , I would be on disability no doubt but it would be far worse I suspect as I just could not live in the pain I am in without these medications . The hysteria is ridiculous and it is killing us and sentencing us to misery and pain based on lies . People who are legally prescribed opioid ARE NOT overdosing people who take them.illegaly tend to and overwhelming are the ones who do. The facts are skewed and the real problem.is a loose border that fails to keep heroin out of our country . Stop the madness and stop the war on chronic pain patients

  16. Maureen Muck at 11:41 am

    I agree. Hopes and dreams do not exist anymore.

  17. Marian Medvec at 10:42 am

    I can only speak for myself. Some people need pain medication. They are not able to get along without it. There are pain management physicians in my area and they do prescribe. I am prescribed a small dose of opiods which can be taken three times a day. There are days that I may take one, or days when I may take three. There are times when I do not even need one. So I know that I am not addicted to them, they just improve my life when I need them. I need to clean my house, carry groceries, all things that cause pain.

    I have had three back surgeries, two shoulder surgeries, several wrist and hand surgeries, including a thumb joint replacement (ouch) and still need two shoulder replacements, which I have declined so far. I have two pinched nerves right now that cause exquisite pain. There is no way that it is reasonable for large medical institutions to just pull their pain programs.

    Surgery is okay but after several surgeries, some successful, some not so much, one realizes that it is not a perfect option. Things are not going to work the same as before you had the problem. They may be much better, but only up to a point. After three back surgeries, I am told that my back is “awful” and it isn’t going to get better, and pain meds are my only alternative.

  18. Mark Ibsen MD at 10:08 am

    Dear Governor Bullock:

    This article shares stories like those of thousands of Montanans who are suffering
    Killing themselves
    Going on disability
    Affecting our economy as well as theirs.
    Our board of medicine receives letters just like those in this article.
    These patients have no where to turn:
    The board of medicine only sets policy through actions against doctors.
    Hundreds of opiate refugees are seeking help, and are turned away.

    You know about the suicides. I have told you about them.
    You helped implement the prescription drug registry. You know that has impacted how we practice in Montana. It has helped curb diversion, and OD deaths from pills are down.
    Patients are unable to get their palliative care for pain due to the fear of regulatory retaliation
    Or
    Arrest.
    This has had a chilling effect on prescribing.
    Doctors refuse to treat pain-
    Some, in order to get more patients to have invasive procedures. Others believe in a myth about addiction- as if the pills somehow magically CAUSE addiction,
    Or
    As if car dealers should be arrested for selling cars to criminals who might abuse them.

    The CDC guidelines also are a problem- especially given they are being misinterpreted by doctors afraid to lose their license
    Go to jail
    Get fired
    Or be attacked.

    Their is no safe harbor for the patients.
    Nor for the doctors who are subjected to Arrest
    Asset seizures and
    Loss of livelihood.

    It’s a public health crisis
    A preventable cause of suicide
    We need your help.
    Please.

  19. Carolyn Padolsky at 10:00 am

    I’ve had extreme chronic neuropathy since 1993 and it’s getting worse as time goes by. I took pain medications (opioids) responsibility for 13 years. Since the DEA and the CDC has entered the picture I have been weaned down and discontinued from pain relieving drugs. I’ve been without pain relief for 18 months and it’s been 18 months of horror and suffering. Why can’t these government agencies stop torturing the chronic pain suffers and figure out a better plan to rid our country drug addicts is beyond me. We do pay their salary and should treated with respect and compassion.

  20. HAZZY at 6:32 am

    I’ve been on Opioids for 27yrs, i take ms contin 90mg 3x a day, plus percocet for break through pain. I was just cut back from 10mg Percocet to 7.5mg so i can deal with that, just don’t keep cutting my meds back !! With my pain meds i can do things around the house and travel and visit family out of state. Iam, not shopping around for meds so just leave my meds alone now.

  21. janice at 3:46 am

    I am so tired of being perceived as a junkie with a needle stuck in my arm. I am 65 and have degenerative spine disease and fibromyalgia. I have had these conditions for the last 20 years and have not abused my meds. Without theork nm, I could not take care of my eight year old or work part time. I have taken higher levels of pain medicines but reduced them when my pain lessened. If my drugs are taken away from me, my quality of life will be a one of my good days. Life wasn’t meant to be lived in that kind of pain

  22. Steven Smith at 3:23 am

    Ed, Would you mind reading and proofing your own copy. Either an automatic transcriber is botching your work or you are simply publishing material that cannot even be read and made much sense of at all.

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