Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. This is my letter to my State (NC) AG written in March 2018- sent THREE times – never answered
   Dear Attorney General Stein,

   I am writing to you as a chronic pain patient that has chosen to stop using opioids. After years of taking increasingly stronger and stronger opioids, I found myself on XXXXX patches and XXXXX transmucosal lollipops. After a while, even XXXXX wasn’t working, and the danger of overdose was real. However, for a time opioids enabled me to hold down my job and have a little bit of a life outside of work. I hold a Ph.D. in Neuroscience and, before chronic pain left me unable to work, I was a drug development scientist for neurodegenerative diseases. Therefore, I know a great deal about the pharmaceutical industry and testing the efficacy and safety profiles of chemical entities.

   I would like to share with you that living with chronic pain every day without another treatment option is an incredible struggle. Unfortunately, the Federal response to a 2011 Institute of Medicine report on pain DISPROPORTIONALLY FOCUSED ON REDUCING OPIOID USE RATHER THAN INCREASING PAIN RELIEF. This focus has left many chronic pain patients suffering needlessly. However, in states with medical marijuana laws physicians have another treatment option that is both efficacious and safe, as detailed below. Unfortunately, as NC is not currently one of these states, I do not have legal access to a medicine that the National Academies of Sciences, Engineering and Medicine (NASEM) stated is effective in treating pain in adults. This stance leaves me with two options; 1) suffer in silence or 2) break the law to get the medicine that will prevent my daily suffering. What would be your choice? What would you have me do?

   Chronic pain affects more people than cancer, diabetes, heart attack and stroke combined.1 The Institute of Medicine estimates that 100 million Americans report having chronic pain.2 This extrapolates to 3.1 million adult North Carolinians living with chronic pain.3 Approximately 25% of these adults suffer daily from pain and over 10% report levels of pain severe enough to interfere with their day to day lives.4 Opioids were historically prescribed for the management of chronic non-cancer pain; however, now we were callously advised by then US Attorney General Sessions to “take some aspirin … and tough it out”.

   Chronic pain can be a death sentence. In NC in 2015, the suicide rate was four people per day.5 It has been estimated that those with chronic pain commit suicide at roughly twice the rate of the general population.6 Therefore, North Carolinians living with chronic pain have a suicide rate that extrapolates to approximately eight people per day (~ 2,920 annually). In 2015, the prescription opiate overdose rate was roughly two people per day or 738 people annually.7 Based on these numbers it would seem the real epidemic may be that of pain patients driven to suicide. The CDC recently reported an uptick in the number of suicides in the US. In 2014, approximately 43,000 suicides were reported; over twice the number of deaths attributed to the opioid epidemic.8 ANECDOTAL EVIDENCE SUGGESTS A GROWING NUMBER OF PAIN PATIENTS ARE KILLING THEMSELVES BECAUSE THEY WERE DENIED ACCESS TO PAIN MEDICATION AND/OR PAIN DOCTORS WILLING TO TREAT THEM.

   There is an alternative to treating chronic pain with dangerous, addictive opiate medications. Twenty-nine states, the District of Columbia, Guam and Puerto Rico now maintain comprehensive medical marijuana and cannabis programs. The NASEM recently conducted a wide-ranging review of the recent medical literature on The Health Effects of Cannabis and Cannabinoids.9 The 16-member committee adopted the key features of a systematic review process, conducting an extensive search of relevant databases and considered 10,000 recent abstracts to determine their relevance. The report concluded that there was conclusive or substantial evidence that Cannabis or cannabinoids are effective for the treatment of

   o pain in adults;
   o chemotherapy-induced nausea and vomiting;
   o spasticity associated with multiple sclerosis;
   o seizure disorders

   Another recent review determined that there was “high-quality evidence,” as demonstrated by multiple positive randomized placebo-controlled trials, to support the administration of cannabis or cannabinoid pharmacotherapy for treating chronic pain and neuropathic pain.10 A recent study published in the European Journal of Internal Medicine reported that medical cannabis therapy significantly reduced chronic pain in patients age 65 and older without adverse effects.11 After six months of treatment, more than 93% of respondents reported their pain dropped from a median of eight to four on a 10-point scale. Close to 60% of patients who originally reported “bad” or “very bad” quality of life upgraded to “good” or “very good” after six months. More than 70% of patients surveyed reported moderate to significant improvement in their overall condition. The most commonly reported adverse effects were dizziness (9.7 percent) and dry mouth (7.1 percent). After six months, more than 18% of patients had stopped using opioid analgesics or had reduced their dosage. These findings bring up an interesting issue. Does the use of medical marijuana cause a shift away from opioid use?

   Cannabis presents a viable option for opiates in the treatment of chronic pain and, as such, represents an underutilized tool in combatting the “opioid epidemic.” A recent study found that doctors in states where medical marijuana is legal prescribed an average of 1,826 fewer doses of painkillers per year and saved $165.2 million per year in medical costs.12 Another study that examined the relationship between implementation of state medical cannabis laws and opioid analgesic overdose deaths in the US between 1999 and 2010 reported that states with medical cannabis laws had a 25% lower mean annual opioid overdose mortality rate compared with states without medical cannabis laws.13 To date, there has not been a single reported death from an overdose of marijuana. 14

   Although the medicinal benefits of cannabis/marijuana have been demonstrated to the satisfaction of the NASEM, more research is necessary. The NASEM report notes a lack of evidence regarding the relationships between efficacy, dose, routes of administration, and side effects of cannabis products. All of these are standard studies to be conducted for any new chemical entity. However, the ability of scientists to conduct such necessary research is hampered by its’ incorrect designation by the DEA as a Schedule 1 drug, i.e., a drug with no currently accepted medical use and a high potential for abuse. Hypocritically, the US Government, as represented by the Department of Health and Human Services, filed a patent in 2001 (US Patent #6,630,507) for cannabinoids that was awarded in 2003, “Cannabinoids as antioxidants and neuroprotectants.”15 This patent contradicts the US Government’s own classification of marijuana as a Schedule 1 drug having no medicinal benefit.

   As a chronic pain patient that chooses to live without opioids, it deeply saddens me that NC lacks the COMPASSION to pass medical marijuana legislation for its’ citizens that struggle with chronic pain and other maladies for which marijuana has been proven efficacious. While the evidence that cannabis is medicinally useful in treating chronic pain continues to increase, without a single documented case of an overdose, federal legislators continue to fight against rescheduling cannabis to enable the necessary research. We pain patients are told to “take some aspirin … and tough it out.”

   Citations
   1. https://report.nih.gov/nihfactsheets/ViewFactSheet.aspx?csid=57 (Accessed March 21, 2018)
   2. Committee on Advancing Pain Research, Care, and Education; Board on Health Sciences Policy; Institute of Medicine of the National Academies. Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, DC: The National Academies Press; 2011.
   3. Rowe, J and Caprio, AJ. “Chronic pain: challenges and opportunities for relieving suffering.” North Carolina medical journal 74 (2013): 201-4.
   4. Nahin RL. Estimates of pain prevalence and severity in adults: United States, 2012. Journal of Pain. 2015; 16:769-780.
   5. https://afsp.org/about-suicide/state-fact-sheets/#North-Carolina (Accessed March 21, 2018)
   6. Pergolizzi J, Jr, Raffa R, Taylor R Jr, et al. The risk of suicide risk in chronic pain patients. Presented at: PAINWeek. Las Vegas, NV; September 5-9, 2017. Poster 48.
   7. http://injuryfreenc.ncdhhs.gov/About/PrescriptionFactSheet2015-Oct2016.pdf (Accessed March 21, 2018)
   8. https://www.cdc.gov/nchs/products/databriefs/db241.htm (Accessed March 21, 2018)
   9. National Academies of Sciences, Engineering and Medicine. The Health Effects of Cannabis and Cannabinoids: The Current State of Evidence and Recommendations for Research. National Academies Press, Washington, DC; 2017
   10. Hill KP. Medical marijuana for treatment of chronic pain and other medical and psychiatric
   problems, a clinical review. JAMA. 2015; 313: 2474-2483.
   11. Abuhasira, Ran et al. Epidemiological characteristics, safety and efficacy of medical cannabis in the elderly European Journal of Internal Medicine , Volume 49 , 44 – 50.
   12. Bradford, AC and Bradford, WD. Medical Marijuana Laws Reduce Prescription Medication Use In Medicare Part D Health Affairs 2016 35:7, 1230-1236
   13. Bachhuber MA, Saloner B, Cunningham CO, Barry CL. Medical Cannabis Laws and Opioid Analgesic Overdose Mortality in the United States, 1999-2010. JAMA Intern Med. 2014;174(10):1668–1673.
   14. https://www.dea.gov/druginfo/drug_data_sheets/Marijuana.pdf (Accessed March 21, 2018)
   15. Hampson AJ, Axelrod J, Grimaldi M. Cannabinoids as antioxidants and neuroprotectants. 2003. U.S. Patent #6,630,507. Available at http://www.google.com/patents/US6630507 (Accessed March 21, 2018)

2. When used as intended, opioid prescription drugs are the best medication for relieving pain for a vast array of medical conditions. When used inappropriately people kill themselves. As with any controlled substance (alcohol included… age restrictions), there is a tendency for abuse.

   However, unlike alcohol, opioid medication does allow those patients who are in physical pain to live relatively normal lives. After ten years of prescribed use, Class II medication has permitted me to function as a wife, mother and employer. When this “crisis” began, my family doctor changed my regimen, leaving me to count the hours until my next pill. After being referred to a pain specialist, he corrected the dose and allowed me to return to my functioning self.

   Scientific studies have reportedly proven that two NSAIDs and one tylenol (acetaminophen) will supply the same pain relieving action as a controlled pain medication. I’m not sure what portion of the population they studied, but I have never received the relief from my symptoms with aspirin plus tylenol. Also,because of my duodenal ulcer, I cannot take NSAIDs or aspirin.

   I am weary of the looks I have received over the years when presenting my prescriptions at the walk-in pharmacies. Luckily I have found a pharmacy that is not bricks-and-mortar that will deliver my medication (and any other Rx in addition to the pain medication.) They follow through with insurance payments, contact the pain specialist and insurance if I need to have an early refill due to a vacation schedule, etc. In fact, I learned about this website through my pharmacy… PMC. The staff is truly the best I have dealt with over the years.

   So many anonymous posts… mine included…. because of the stigma attached to needing and taking pain medication. I want to come “out of the closet” and help to make sure this fine medication is not banned. I’ll be at the rally in Philadelphia.

3. I have a lot to say cause I’m REALLY UPSET. I’m almost 40 years old, I have several medical conditions and unfortunately I live in FL. I was having back pain before 2005 but it was managed with ibuprofen/Tylenol. Then I began suffering from so much back pain and I was taking too many ibuprofen, that it led me to become allergic to it. I finally found a pain management dr and got pain meds. My pain eventually started going to my arms and legs, making them tingle and go numb. It was so painful. I went to several doctors and I was treated like a drug addict until I was finally diagnosed in 2011 with fibromyalgia at the Mayo Clinic. And I was also diagnosed with degenerative disk disease. I also have anxiety and depression (I’m lactose intolerant and I have really bad menstrual cramps that I get for 3-5 days before my period and 2-3 days when I get my period. The pain is so bad that it affected my work as well. I’ve been taking cbd pills for 6 months and noticed a decline in my cramps from a 10 to a 2, 10 being the worst pain. But the cbd pills don’t work very well for my other pain). Pain Pain PAIN!!! That’s my life 24/7, 365 and 99.9% of my life. I’ve had 3 good jobs over the last 8 years and was fired from all of them because I was taking too much time off, I wasn’t myself due to the horrible pain/cranky and I just don’t feel well enough to sit or stand for extended periods of time, and I’m fatigued. I’m really upset with this opioid crisis cause I’ve built up a tolerance to my pain meds but my doctor says his hands are tied (by the FBI/DEA/pharmacies/etc and he’s probably afraid) and he can’t increase my dosage or quantity. I’ve been on the same dose/quantity for a long-long time. I have no quality of life, my husband does all the chores/shopping around our home and takes care of our animals (I hate saying this but thank goodness I was unable to get pregnant), I can’t hang out with friends or family, I can’t hold a job and have been on unemployment several times (that’s another horrible issue in FL only getting 3 months of pay for pennies on the dollar versus what I’m used to making). I’m honestly thinking of trying to get disability. DISABILITY!!! Why me? Why can’t I receive the proper care from my dr to get the right meds so I can work, have a social life and not be in pain so much? God what did I do to deserve this? If they were to take my pain meds I would probably kill myself, unfortunately like so many others have. It was very difficult here in FL for several years to get my pain meds filled. I would go pharmacy to pharmacy and drive miles and miles. Only for everyone to tell me they were out. Finally I was able to get them. My last appointment my doctor asked me if I can reduce my dosage. What?!?! I just lost my job because I can’t concentrate due to the low dosage and quantity!!! And, trying to get medical marijuana is expensive and not covered by insurance. Will I qualify to get the new dr to prescribe marijuana to me? Will I need to take a drug test at my new employer or is it legal? There are too many unknowns in FL. Please help us chronic pain patients!!! The government and any other federal agency CAN NOR act as my doctor!! You can’t take my pain meds without a good, valid, working and reasonable replacement. Take an aspirin, go to chiropractor, take yoga, etc. I’ve tried most of them. But I can’t afford some of them, some don’t work, and some are just not something I want to do. Live a month or year in my shoes. We need to legalize marijuana on a federal level and declassify it from a schedule I drug. Please I’m begging you or CPP will increase the number of suicides and I really don’t want to be a statistic. And the opioid crisis is over and the pendulum has swung too far in the opposite direction. CPP need our pain meds, PERIOD! I agree with all of the facts in the letter by Dr McKenna. I’m going to be at a rally on January 29, 2019.

4. I live with chronic pain continually all day every day 24/7 and am getting to the point it is hard to even make it to my doctor appointments ,sleep, live in any productive way. I have never abused my medicine but it is not enough so it is hard after all these new laws, no it is impossible to make your meds last and not suffer to the point of hating your life. I am suffering to the point that i don’t know how much more i can take. My doctor told me my back was the worse he has seen and he is a back specialist. they wan’t to perform a 12 hr surgery that will take a year to recover from. Well if i can get no relief now, how will it be after surgery? I’m not even sure i would make it through it. I won’t die of an overdose but maybe from pain.

5. I have been though 3 lower back surgery i been in pain since 2003 been on pain meds since and now they want to cut us off and stop it this shouldn’t be.. People make choices to use street drugs this shouldn’t be taken out on the real people that are in pain

6. I was a cancer patient in 2007 and had aggressive treatment and it took a toll on me and triggered my disease called fibromyalgia. I have had pain so bad in my hips and back where most of the radiation was given that it puts me in tears at times . I have been on my pain meds now for 10 years and they have helped me to live a somewhat normal life and if they were taken away I really do not think I could handle the pain for long. Without my medication I would be confined to my bed and do nothing to contribute to life. If this was to happen I know I would fall into deep depression. Our doctors need to be the ones to decide what and what we don’t need. We are not addicts we are people with a chronic illness and do not deserve to be punished for something we did not do . Leave our medications alone. We have every right not to have to suffer.

7. Hi. My name is Pam. My pain story has been a long one. I finally found help from a friend in 2007.
   She recommended a Pain Management Dr. to me, so I went. I had to jump through so many hoops to even get meds that worked. But my Dr put me on Methadone and hydrocodone. And it really helped my back and hip pain!
   Then in 2016,the day my Sig. Other passed away from a massive heart attack, my pain Dr, took me off the Methadone, cold turkey. He said, “it was b/c I was on clonazepam. I’d been on that med for years and my pm Dr knew every med I was on! All of the sudden he jerked me off this med and lied about it! He left me on Hydromorphone, but it stopped working. I cried, literally on the phone to the nurses how much physical painn’t withdrawal misery. All they said was to soak in Epsom salts. Ugh!! I was crazy! I was grieving and going through withdrawal and in constant pain. It didn’t matter. I wasn’t getting anything else. I even asked to be on a pain med I was given before, just to change, but no.
   This went on until this year, in October. I had a Medtronic Stimulator put in my back by a great surgeon. But this surgeon gave me oxycodone for the pain from surgery. It worked. But he couldn’t keep writing that script. I had to ask my pm Dr. So, I did. And don’t give me that hydromorphone anymore! He gave it to me with a paper saying all patients would be weaned of their pain meds! Whaaaaat?
   Everyone thinks WE ARE the reasob for the Opioid crisis. WE ARE NOT! Why can’t the FDA the Feds and everyone else who blames “”Chronic Pain Patients”!
   We are Not! It’s the drugs coming into our country, mixed with whatever and sold to addicts! They die! Unfortunately! I would never give anyone my prescription! I need all I have! But, because pain patients take these drugs, were to blame, and so, b/c its written like we are the cause we’re blamed.
   We have to stop this!!! It’s lies told to the public.
   I’ve even been shorted for months on my pain meds from different places I’ve gone to. 84 ct. But received 42? They wouldn’t even count my pills in front of me. Said it was against the law. But I came home with 42 tabs instead of 84 and1/2 of the Methadone for 27 days! I told my Dr. Did he believe be? I guess so, he gave me another script, but I was still shorted. I even wrote toour Attorney General in Missouri. Mostly b/c of my Dr taking a ned away that worked for me. But, then said about being shorted on my pain meds.
   He wrote back and he wrote back! Said he take care of it. I didn’t get my Merhadone back, but the pharmacies that shorted me on my meds stopped. And I named names too!
   Well, I could say more, but I’m tired. My spine had narrowed so badly, before the Medtronic Stimulator was put in, I started dragging my right foot. The pain was so great, the 2 months before I was in bed mostly. In constant pain. So, in my opinion, the lies need to stop. It’s not us. But we’re getting blamed for drug overdoses.

8. I wrote to our President in Hope’s that he might better understand pain patients.

   President Trump

   Make America Great Again, I see that you are not looking at both sides of opioids. You are looking only at addicts and completely closing out “Patients Not Addicts. I am a 74 yr old women that has done many good things in my life. Adopted 3 children, stay at home mom. In charge of a family of 7 boat people (ethnic Chinese Vietnamese). Sunday school teacher. Took in a Japanese student for 3 years until she graduated from college. Was widowed in 1983. Remarried in 1988 (lucky twice in a life time). Started and ended up with the largest yacht detailing company in the Pacific NW eventually developing a line of boat detailing cleaners.

   I was a patient of Minor & James Clinic in Seattle for many years. I think this is one of the most shocking things that ever happened to me. This clinic KICKED OUT ALL PAIN PATIENTS! Think about the enormity of this.

   Why am I telling you this, so you don’t think of us as lazy drug loving people! I was in a camper explosion and had many surgeries on top of that I have fibromyalgia, It runs in our family. I am in pain 24/7 and the opioids help me, without them it would be impossible to live.. I am not addicted to them, we are dependent. I don’t think you know about both sides, if you did I am sure you would be able to deal with both sides. I am glad you are our President but on this issue you have failed so many. Please help pain patients.

9. I have Hidradenitis Supprativa it’s very painful disease with no cure because of the government changes getting pain management has suffered significantly. Cancer patients isn’t the only one that r suffering. I know opiates have been abuse but it’s folks that depend pain meds just to get out of bed. Liquor and other things get abuse and cause death every day they don’t talk about stopping it. Who give anyone the right to tell someone the pain they feeling. If anyone had my HS3 I guarantee u would be begging for help as I am now or someone to put u out of Your misery cause u hurt that bad. This shouldn’t be a one size fits all situations and folks shouldn’t get treated like drug addicts because of pain. I invite anyone to my home to see what I go thru on a daily basis.

10. I had my dosage reduced by nearly half approximately 18mos ago. Then, 4 days before this last Christmas, I was discharged from my pain clinic of more than 6 years without any explanation. I regained the ability to be active and productive after being bedridden for over 5 years after my dose was increased with this clinic with no incidents suggesting over-medication and complete compliance on my part. I am back to spending all my days in bed experiencing intolerable pain just to go the restroom. My only activity is researching statistics and other relevant information to help the cause of chronic pain patients to reverse what is happening to us. The World Health Organization said it well when they supported us with the statement that taking our medication from us was “tantamount to torture”.
    I am turning 62yrs old this year and have been in chronic pain since I was 20. I’ve had a plan for ending this torture for many years. It was a miracle when I was finally receiving effective treatment after 20 years of hell. I promised myself I could never go back to that life. I don’t know how long I can hold out before turning to street drugs or deciding it’s too difficult a fight.

    P.S. This rally is on my birthday. I can only try to interpret this as a good sign. I’m not certain if I will be well enough to attend but definitely would like to do so.