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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)
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.
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.
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.
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
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.
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.
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.
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.
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.
After reading others comments I feel like I wasn’t affected by the crisis as bad as the others but still paying for it. Lost a Doctor after six years because he no longer wanted to prescribe. Been on Fentanyl since 01 but was on a dangerous high dose and the Doctor dumping me was a good thing. Ended up in a pain clinic. I wanted down on the dose so the NP took me down to 75 micrograms of Fentanyl every three days. Working better than the high dose and feel better. But the pain clinic I go to is run like a pill mill. Feel like a addict and criminal. Used this responsibly all the years I have been on. Never filled early or went to more than one Doctor of pharmacy. Has worked in my favor so far. But now my drug insurance wants prior authorization or they won’t pay. Afraid the pain clinic won’t deal with them then I will be stuck paying 400 I don’t have. I live in AZ currently. The medical care is uncaring unprofessional and downright scary. Hope I make it through this crisis until I can get back to my home state that has better care. Been lucky in this crisis. Still have meds but for how long?
My name is Chad and I am 45 year old who is a Father of 2, Husband of 25years, a Pastor and a Contractor. I had a wreck in 1991 follower by a skydiving accident that damaged several discs in my Lumbar. I have battled depression and been suicidal because of the pain and my health providers are making it constantly harder to deal with pain even after 2 surgeries with fusion which is making my depression worse because they are taking away the only medications that allow me any sense of normalcy in life and life has became very difficult to live and enjoy any semblance of life because they continue to take away the most affective mean of relief I have and treat me like a drug dealer.
I had the best pain doc on the planet until this past June 0f 2018 the DEA broke I to his house and started to harass him with lawsuits. The DEA came to my house and asked me all sorts of questions about my doc who was the only pain doc I ever had that actually gave a damn about me. He was so caring that he would spend an hour if I wanted discussing the pain that was causing suicidal depression. The DEA came to m.y house asking me sternly if I had ANYTHING I would like to share with them and was encouraging me to make up something for them. My doc was the best and had to quit because he was harassed by the DEA and forced to release all pain patients because he was constantly harassed. Now I’m in constant pain that is uncontrollable become even though I’ve been through 3 back surgeries its worse than ever and I am hopeless to find a doc that actually gives a damn because they are terrified to do their Job and help ME LIVE!
After seeing the commercial on tv and then reading some other post I thought I was alone. I broke my back in 1994 at the age of 23. I was in a boat accident and we hit the shoreline and I flew out of the front of the boat. My buddies called 911 and they rushed me to the hospital and I thought I was going to be paralyzed for the rest of my life! I could not pick myself up or move for a little while. In the ambulance they gave me a shot to help with the unthinkable pain you’ve ever felt! They did an MRI and X-ray at the hospital and told me I was ok. Well after they finally got a hold of my brother they released me from the er and my brother took me to my parents house who had just left for vacation in Cancun and didn’t even land yet when they got the message that I’d been in an accident. They took the next flight back home to make sure I was ok. It was a good thing they did as my mother took me to a specialist the next day and he told me I was lucky and had broken my back. I ended up in a brace that was so uncomfortable it was crazy. He wouldn’t even let me open a door for awhile and was pretty much bedridden. I could not wait to get back to work and just life itself so I rushed through physical therapy which I regret now. I pay for it everyday. My dr told me there was not a whole lot he could do and I could live on pain pills or deal with the pain. Well I delt with the pain for years and the older I got the worse it got. It’s been about four years now that I’ve been taking pain pills and I don’t want to live on them but I’ve got a choice either hurt so bad where I can’t hardly do a thing or take them and somewhat live a normal life. I love to fish and could fish for about four days in a row but not anymore, I’m lucky to make it through a day. I have been hard on my body as I’m really active well use to be and now have a herniated disc at L5-S1 and two at C-6&7. The one at L5-S1 is 7mm I think that’s how they measure it and can’t even get out of bead some days. My regular dr use to prescribe me pain meds then she told me that she was no longer going to be able to prescribe them to me and that I needed to go to a pain management dr. OMG! What an experience that is. When I first started going the place was packed with people and felt like they were thinking oh he’s just an addict or something like that. Then I had to have another MRI and they were like oh? Then I went through the epidural process and the last time they gave me the epidural and two fawcet injections that didn’t work. The specialist told me no more epidural shots there not working on you. So now the place I go is like empty now that the laws have changed and even the pain management dr is scared to prescribe me pain meds even though I have all the MRI and documentation in the world. Now he went up to $375 for the visit because he changed me over to oxycodone. Talk about a rip off! It doesn’t help anymore than the norco did. But what choice do I have to just have a somewhat normal life. And I don’t see what everyone is wanting to get a hold of opioids for. I don’t feel any different taking them than I don’t have the pain. But going to the dr feels like going to a drug dealer to pay and to the pharmacy to pick them up. It’s gotten to be such a pain in the ass to just try to live somewhat a normal life.
61 year old male, grandfather, father of two daughters(two successful daughters). Ive been on pain meds since 1996 (480mg/day )at my highest dosage. For the past year Ive tried to ween down because of the new laws coming in 2019(160 mg/day). I will survive at this dose but Im seriously considering suicide because of the pain. Also, as of Feb./or/April1,2019 my medication will no longer be available (only hospice and cancer patients will be allowed-fed. law). I was a one man self-employed construction contractor for 35 plus years. Relatively successful but I have no pension, I receive $1250/month SSD and after 40 years of being a law abiding tax payer I will now be forced to commit suicide or start shooting heroin, At 61 years old, the politicians are willing to ruin my entire families lives, for one reason and one reason ONLY, political Gain.. My pain mgmt. doctor attended legislation meetings at the NJ senate and the politicians just don’t give a s… The attorney generals response was Im going to stop allowing doctors from prescribing pills and he doesn’t care if everyone who needs the medication starts doing heroin. These were his EXACT words.He just wants all New Jersey people to know “His name was the leader who passed this new bill”. Its sickening. In 2015, I was forced to file for SSD. I was involved in an auto accident where I was rendered unconscious and fractured my neck bone at the C-2(of course the at fault party had no auto insurance). Prior to that day ,I continued working with the aid of the medications. Since then, I cant do anything but sit in a chair all day long or lay on the couch. Its my only form of relief along with the meds. Since 1996 Ive been on pain meds and never ounce felt any ill affects. I heard that senator Sweeny of NJ was on our side but couldn’t convince others to join him. Although im a staunch republican and sweeny is a powerful dem., talk to him. Get his attention. he may be willing to help. **How about this for a solution. The Govt. is allowing my doctor to prescribe fentanyl patch or pill , morphine, etc. , but wont let me take my medication. The other meds are TEN times stronger but not in the spotlight or on the attorney generals radar. I hope he realizes that “THE WORLD IS ROUND” (what goes around comes around).
I am glad that I saw your tv add.The Florida government put in effect laws on governing how a person manages pain and put a smiley faced chart to tell you how they feel about your personal problems,these geniuses are about being dictators,this is a violation of human rights which they think they are protecting,there phoney numbers on dying are like all numbers they give us.Anything to help you I will do my best.I can go on and on to express the outrage but I am on my to the new robbery Dr the pain doctor to be asked and made to take a mandated drug test that I pay for and asked questions to for my protection pain Drs are a new policing department
I can go on all this for a drug that is 5000years old and nothing has replaced it
Growing up in California I was a beautiful ballet dancer who was beyond flexible. I would do party tricks with my body and was not until I was 35 that I was diagnosed with Ehlers Danlos Syndrom also known as E.D.S. At any given time I can pop out of the socket in each and every joint down to my fingers. My hips pop out many times a day its bone on bone my C-Spine down to my lower lumbar are done I have crushed disks, bulging disks, Stenosis, Sciatic, and neck is compressing head is too heavy for support. I have been in pain management since 35 I am 43. In 2012 I bought a home in the Florida Keys little did I know this would be the start of the nightmare. Florida was the only state that did not triple script their meds hence the pill mills of the early 2000s. Drs here are are were too scared to treat people like myself that since 2012 I have to fly home to California every 4 months to see my Dr can’t find a one here and I have looked through the entire state I would see signs in the waiting rooms that would say we don’t treat pain here! Oh okay so yep thousands of dollars later for travel expenses I am now having my meds cut down not per my Dr but per the new laws that now dictate how many milligrams we need of meds per day! Who has the right to dictate our pain levels to decided a universal dosage amount? It’s a genocide of the disabled I used to fly through the air on pointe shoes now I hope my hips don’t pop out while I am walking so I don’t fall. My doctor is amazing and is a fighter for his patients now we need to take back OUR rights I would like to be on the front lines I have a lot to offer and would commit 1000 percent. Contact me if I can help
5 years ago I had a horrible accident. My femur bone had fractured in two. I was treated at an Orlando hospital. I was 60 at the time. The long and short was that the doctors did not treat the pain during the first day and night. I urinated on the bed while I was screaming. The orderlies were unable to move the sheets off from under me because any movement caused catastrophic pain. I begged for some treatment and was given none. I never before believed pain could be so severe that I couldn’t even use my sight. Everything went black during a pain episode, I was screaming during the evening and night. NO ONE should have to endure what I did. I was told that because I lived in Florida, drug abuse was always a reason for not treating pain fully. Ridiculous – especially for a 60 year old. I will never revisit that hospital. Also a male nurse told me afterwards when I complained that I shouldn’t expect full pain treatment. I told him that screaming for around 24 hours was unacceptable. The hospital was “Dr. Phillips Hospital “Thanks for letting me tell my story.
I’m not a pain suffer but I am to a certain extent. I don’t know in my body what chronic pain is but I take care of my husband that has lived with this for over 20 yrs. We have been to world renowned nerosuregons, orthopedics, anesthesiologist and Pain Management specialist. When I say we, he and I are in it together. Through all the suffering, tears, heart break, heart ache, the loss, the lows and the Pain.
I have watched my husband for all the years have a good day and the worst day you could ever imagine. He has missed out on many things with his children due to his pain and those are memories you can’t get back. We have missed out on our own adventure together due to his pain. Just when you finally have a doctor that can help you and you’re able live a somewhat functioning life this horrible deception is thrust upon the pain patient’s world.
This deception is what is killing the chronic pain sufferer. It’s the War On Opioids.
The average person doesn’t understand what a chronic pain sufferer goes through, not even doctor’s unless they are schooled in this. The CDC, FDA, and our government has issued guidelines without taking data in the chronic pain community. It’s killing my husband and many of my friends.
Without Opioids my husband can’t get out of bed. He not an addict! He is a man that has been poked, prodded, experimented on, and no avail the only thing that has helped him is Opioids.
I wish that there was a cure, a device, a surgery, a miracle, but alas there are none. He has had spinal blocks, nerve compression surgery, radio frequency nerve burning, steroid injections, and a spinal stimulator. These are so barbaric and I deem them torture. You do whatever you can to make the pain go away but it’s still there. The depression sets in and sometimes he just wants it all to go away. He looks at me with tears in his eyes. What can I do to make this end for him? How can I make the pain go away?! That’s what the caretaker lives with, that’s what we carry, this is our life.
Now we are living in a time where pain management is demonized for chronic pain sufferers. Why? If you have exhausted every means of trying to control your pain why because of bad actions of others do our loved ones have to suffer.
Now we have individuals in the government dictating how our loved ones pain must controlled. By this I mean apparently everyone’s pain is the same. Not true! What one person’s pain threshold may be is not that of others.
How would you feel if anyone you loved came to you and said, “I can’t live like this anymore “, what would you do?
I wish everyday that my husband could find a cure. I wish everyday my husband wouldn’t have to be a Guinea pig. I wish everyday he could have a semi normal functioning life. Don’t get me wrong he has his good days, but on this good days his pain level is a three.
Think about all those times you go to the doctor and they ask what’s your pain level. My husband’s on a good day is a three and those are few and far between.
We are scared right now. We never know going to the pain management if it will be the same dosage that’s given, a different drug that doesn’t work, a barbaric procedure, or I can’t see you anymore.
We lost our very skilled and well known pain specialists due to restrictions being put on him. He actually had my husband up and out of a wheel chair in 6 month’s after first treating him. Now we are going through hell again since he let all of his patients go.
Where does this madness stop. How many like my husband have to suffer?
I know you have seen me state, “WE”, many times. If you are the caretaker of a chronic pain sufferer it’s US, WE, TOGETHER.
It is pain. It is hurt. It is love.
Thank you.
Hi. I am Steffeny and I have facilated support groups for pain on and off for 30 years. I have CRPS in my full body, I go to hospital for ketamine 4x a year to be able to walk and my skin burns. I am presently starting a new group atStanford for just CRPS
This is a human rights issue and I for one have seen and had happen a bunch of harmful things in past two years. My do. Tells me in two months the 25 year relationship was over and I was so worried I would be bedridden I had a heart attack and pain in four limbs. Then a trained pain doctor dropped my meds by one third with out talking to me.
In hospital every patient is being left in pain. Stanford let’s people stay day and half if the want. They all cry and moan. I think every doctor who has not had childbirth to feel it for 5 min. They be fighting with us. I am available if anyone interested. I want to do something as well
I’m a retired aerospace worker who has had two knee replacements and a major foot fusion and I need shoulder replacement and hips going bad do to osteoarthritis. I am 61 yrs old with stenosis in my neck and lower lumbar for years. I don’t smoke , drink or due illicit drugs. I have been on pain medication for the latter part of my adult life . My pain management doctors attitude towards me has changed drastically. He refused to adjust my meds to deal with my increasing pain level. Now I spend more time in bed and can’t function because of my increased pain level. It’s not fair!!!
After over TEN years of stable and effective Pain Management my Dr. retired and the APRN’s who took over his patients until a new Doc is hired have REFUSED to prescribe ANY pain medications because they think it’s now illegal to do so!
Chronic Pain due to nerve damage. Left kidney removed due to Renal Cancer
CUT OFF ALL PAIN MEDS WITHOUT EVEN A PROPER TAPERING.
The CDC should be held LIABLE for their reckless non-evidence based recommendations.
Relief from Suffering is a HUMAN RIGHT.
SHAME ON THE CDC
I am responsible adult. I have managed my pain in the past needing pain killers for bouts of back pain. Then 4 years ago I requested pain meds from a Dr. that had given them before …and he looked at me like I was an addict. . I knew nothing of the change that took place….he explained….now 3 years I am in horrible pain, near surgery and fighting a battle of pain, fear, and am scared for my future. My government will not allow me the relief I and millions of others need because of an epidemic…an epidemic us responsible users of medication did not cause. So the statistics will go down and the goverment will get credit for less abuse of medications, while us in pain suffer and our Doctors feel bad that they can’t help us. The laws need to be changed…I am still baffled and furious everyday that there is no middle ground!
I suffer from chronic acute peripheral neuropathy. There is no cure and it causes continual extreme pain. The only management alternative I have is pain medication which I have been taking for 15 years. Since the new restrictions were enacted my pain medication has been cut in half leaving me in extreme pain 24 hours a day. Basically, I have been restricted from performing day-to-day activities to the point that I only get dressed once a month and that is when I have to go to the pain doctor. The rest of the time I just sit in my robe in pain. These new regulations are barbaric and senseless. I can find no medical research to substantiate the levels of medication reduction so I have to imagine someone just picked a number out of thin air. The reduction levels also do not take into account those persons that have been taking this medication for years and may have developed tolerances. This whole situation it Is ridiculous and sadistic.
I am a Chronic Pain Paitient and have been for close to 3 decades. I have been diagnosed with Fibromyalgia, Degenerative Disc Disease, Osteoarthritis and Chronic Kidney Disease. My initial Fibromyalgia diagnosis occurred within the same year as my back injury. For over 10 years I was told my back pain was a muscle spasm and received muscle relaxers, high dose Ibuprofen and Physical Therapy (PT). During the next decade I suffered from bi-lateral ankle tendon tears, shoulder tendon tear and subsequent surgeries (3) and increasing back pain, neck pain with numbness and pain radiating to my extremities. I was give prescriptions of anti-inflammatory medications as soon as they were new to market to curb the pain (Orudis, Voltaren, Indocin, Daypro, Vioxx, Celebrex) these meds and 6-8 eight weeks of PT almost every other month filled much of the 1990’s. I started to suffer from depression as the pain increased, my activity level declined and many of my favorite activities had to be given up.
I finally reached my total breaking point in 2006 due to pain and depression and left my job and filed for disability. I visited a Neuro-Surgeon who confirmed my neck and back were in bad shape. Even though my low back pain felt worse than my neck, the neck was in worse shape in that my spinal cord was being flattened by bulging discs. The surgeon performed an Anterior cervical discectomy and fusion (ACDF is a type of neck surgery that involves removing a damaged disc to relieve spinal cord or nerve root pressure and alleviate corresponding pain, weakness, numbness, and tingling) from C3-5. Three weeks later I had laminectomy with disc dissection. My pain level was greatly decreased for a period of time but returned about three months later.
Without the use of opioid pain relievers I am unable to function at any level. Writhing in pain, and only able to lie in bed all day and night is no way to live. I can no longer take NSAIDS due to the past long-term use and high dose which has now destroyed my kidneys as I am Stage 3 of Chronic Kidney Disease. I have contemplated suicide numerous times prior to finding suitable drug regimen which keeps my pain tolerable. If I were to lose my medications, I’m not sure how long I would be able to tolerate the pain without making a life or death decision. Please don’t put street addicts and those seeking a “high” in the same category as those of us who actually suffer chronic pain. Pain patients don’t get a high, we get relief which allows us to live like the rest of the world.
The recent changes to opioid prescriptions has only made it more difficult for me since I must now travel every month to get a new script versus having a 90 day script and driving to the pharmacy every month instead of every three months. I don’t like to drive since I recognize the meds slow my response which could lead to an accident. I am subjected to a urine drug screen at every appointment to confirm I have opioids in my system. My doctor has to remind me at each appointment that I am taking a higher dose than what Medicare states I should take, which is 90 mg per day. My 120 mg dosage is extended, time release and I have been on this dose for over ten years and have never abused my medication at any time.
Now the goal is complete removal from opioids and undergo procedures to fix/treat my problems. Many of my current painful body parts are non-operable and/or risk of making the problem worse. I just had eight steroid injections in my lower spine and look forward to about the same in my neck, then my feet, knees, shoulder. Steroids are no the answer, but the only choice my Pain Doctor has given me.
I have cronic sevier pain from multiple rare disorders.at the start of opioid war i lost 3 family Dr. Who just dropped my pain meds. For no reason other than we will not write rx pain meds. This has left me to exist with pain level of 9 to 10. I fall under palative care but still can not get pain control. I now spend 90% of my life in bed crying in unbearable pain. I can’t even shop for food. Clean my home, or walk my dog. I have no connection to friends or family due to pain, I am fully disabled and have no quality of life. This force stop has imprisoned me to my home. Please help stop this injustice.
Hello
Thank you all for working so hard to help us ,, this website the rallys the posters etc THANK YOU 😂
I am not going tell you all my problems
But what gets me is The Lies the Doctors tell us as why they lower our meds .They do treat us as juveniles and or like we are completely ignorant
They can in some cases help us but refuse because of our being on State Insurance .. no injections, no implants
This really hurts ,,Give me steroids
No .. because it cause brittle bones etc
Oh but causeing me more pain by taking away my much needed meds help!
How about nerve blocks! No..
Your insuance wont pay ..
They offer yoga or counseling how to deal with pain nothing else LMAO
Amazing they went to schooling and training for what ? Not to Heal or to help
Greedy money hungry Ego driven
Power driven, makes me sick
Please everyone show up at the Rallys i am going in Az
I am on a tight budget I’llsleep in my car
and save gas money make a brown bag lunch/ dinner I need to go not only for me but for you ..
We also need to look for a Lawyers to help us, We need to fight back in the courts
I hear all these stories and It does help
I knew i wasnt alone but felt very alone
Now someone finally has the means to pull this together for us
THANK YOU for Returning some power back to us
Thank you for your hard work getting this Website up
THANK YOU for helping us
Sincerely 😉
Rose
Peace 😚
Went to a new Pain Management Doctor the other day. I am in extreme pain. I asked/begged for better medication for my pain other than Advil…3x a day at highest dose. He gave me oxycontin.. When i got the prescription I got a box I did not recognize. It was Narcon…which is used to resesitate a person when they are overdosing. I am so po’d. I do not want anything on my record showing I received this. I am a 67 yr old woman who have rarely used these medications in the past. What gripes me most is that the Doctor conveniently didn’t mention he was giving this to me. Not sure if this is a new regulation, but I feel embarrased and humiliated.
I’ve been living with chronic pain for six years now. Was diagnosed with degenerative disc disease and cervical spondylosis. I’ve seen two neurosurgeons one 6 years ago and one last year which both gave a 60% success in surgery my attempt to ease my pain. Why would I have something that extensive done with such a low of success, no way. I began seeing a pain management Dr. 4 years ago, and last year my medication has been reduced twice. Now it’s so low I have no quality of life. Many days in tears not because of depression but from inability to function. This reduction by people who have no idea what it’s like living with chronic severe pain is outrageous and my Drs hands are tied. The sad part is that Drs take an oath that requires them to put patients first. I’m not blaming my Dr. in fact from what I’ve read from other people I’m fortunate to have my Dr. prescribe me medication period. If more Drs would advocate for us I think this situation would change. I try to stay proactive in my care and am greatful for PNN in keeping me updated and today I was fortunate enough to have been sent this outlet. Kudos to you and PNN for the ability to have us heard. Thank you.
I’ve been diagnosed with this crippling disease for over 20 years. When first diagnosed I was given any and all pain medications to cope with the pain. Then like turning off a faucet, it stopped. Without warning. I’ve had doctors go from giving me any pain killer I would ask for to telling me I shouldn’t be in pain, overnight. I still (rarely) will find a doctor with sympathy in my plight regarding the pain. Most doctors are too afraid for their jobs and will prescribe a measly 3 pills a day of a small dosage of something. It has caused me to hate living, breathing, eating, everything. There isnt joy to be found when everything you do causes pain. There is no logical reason for this opiate witch hunt on those of us that NEED the medication to live out our miserable remaining lives. Leave us alone! We go through enough crap from being always broke paying medical bills, to traveling to and from doctors offices, to having yet another painful test done, to trying yet another new procedure or medication that insurance company INSIST we try first before they approve narcotics, to night sweats, to diarrhea, to constipation, to missing social activities, to social anxieties because you’re afraid you’ll be a total b*tch because of the pain, to yet another failed marriage or relationship, to having a hospital become your second home, to wishing you could lose weight but cant move, to dreading taking a shower or using the toilet because it hurts so darn bad, so please, PLEASE LEAVE US ALONE!!!
I have had severe back problems for over 10 years. I have seen pain management doctors, done therapy, had too many epidurals, take pain medications and still I am in pain. My pain meds have been reduced to where it doesn’t do very much for me. I have severe osteoporosis and COPD with oxygen 24/7. My quality of life has been reduced to being in bed crying from the pain. I have grandkids that I can’t even enjoy being with because of the pain. Why is this happening to us.
Why are we being punished for what the dope dealers are causing. You say there is an Opioid Epidemic, who is it happening too because we sure aren’t getting the pain meds.
I’ve been dealing with chronic pain for a decade. It got bad enough to be referred to a PM about five years ago. Two bulging discs, sciatica and SI joint issues.
I’ve been lucky enough to have a good PM doc, but I don’t receive a high dose of PM’s. But, she is caring and will listen. So I count that as a win.
However, because I take PM’s, I’ve had to do repeated courses of expensive PT. I’ve had two sets of three shots in my back and a set of two in my SI. None of the back shots helped. The SI did help about 50% but for only about two months.
Why must we be subjected to all this extra and EXPENSIVE therapies if they’ve shown before that they didn’t work for us? I definitely understand trying it the first time. But if someone doesn’t want the shots, they shouldn’t be made to get them in order to get their PM’s.
What bothers me greatly is the fact that our rights are being taken away. With NarxCare, our due process rights are taken away. Police can see our info with no subpoena?? We can’t correct any errors or offer explanation because we aren’t to know our score? How is this right?
Now, they’re passing laws and regulations similar to the Red Flag Laws for firearms. Everybody was perfectly fine when it was because of guns. But now that it’s encroaching on our medical rights… now everybody is angry?? Very hypocritical. This takes away due process!
This is why you must protect ALL rights… even the ones you don’t necessarily agree with! If we hadn’t allowed the Red Flag Laws, they wouldn’t have even thought about this new one. You let them take away one right for one reason, and they’ll keep doing it.
The MSM started this crisis and they need to end it. All because of their news cycle, they’re hurting millions and killing thousands from suicide.
The government needs to stay out of our doctor’s offices. So many doctors are terrified of losing their license, and rightly so. The DEA is targeting anyone so they can appear that they’re fighting the “opioid crisis”. So many good doctors have had their lives upheaved and ruined from this.
The pendulum is starting to swing back some, but ever so slowly.
We need to stay strong and keep going…we’ve got this!
Hello.
Tips and tricks to know about RESPONSIBLE, PRESCRIBED, low dosage, opioids….
1) People do abuse the drug- because it works to elevate mood. This is half of how it helps with pain- opioids also flatten pain symptoms. Pain relief is attractive.
2) Media, others, play math and word games with opioids. A low dose for a year is 5 mg, 6 times a day- that is over 2,000 pills a year- enough for a prescription for 100 people after a dentist visit. Anticipate, fight against, math and word games.
3) If you have no pain problem- much better off without the downside of pain relief- real life impulses are muddied- however, if pain locks you down, makes you get weaker (Deconditioning) as you circumvent pain by avoiding activity, opioids in low dose SAVE LIVES as we do not weaken as quickly and our quality of life, health, also improves. No one dares tell this truth!
4) It is a FAT LIE that one is permanently addicted in a week- (I don’t know about hard drug use) opioids are the ONLY drug I know of (salt, sugar, chocolate, motrin, caffeine, alcohol, weed, etc) that stably works day after day, year after year at low dosage.
Pain relief is attractive- but as we are now treated like a suspect, there is nothing you can say to express this truth adequately. Notice you cannot hire an attorney for a court case- the Medical Industrial Complex merely infers you are suspect. It is a breakdown of the U.S. constitution and amendments because nobody has charged you (or me) with any wrong. See?
5) There is a vast, medical, industrial complex which has MAJOR PROBLEMS inside it- they cannot hold meds for pickup because (AS I RECORD THEM SAYING) …the staff will ..take.. your meds… . They conceal their problems by deflecting onto, blaming the muted, end, patients.
Remember the Navy Seals caught abusing opioids? They were used as scapegoats so the MEDICAL STAFF supplying opioids remains hidden and untouched. Even the Seals, so true, honorable, are used like scapegoats by the Medical Industrial Complex. Only civilians can speak up for us all. See how that works?
Many will die owing to the overreaction to the opioid crisis. The massive increase in opioid deaths was instigated by another, rival, nation producing and sending us enough Fentanyl to kill every US citizen monthly, both through USPS and across borders.
If you risk acting up, speaking up, protesting, remember you are fighting the good fight, and this does not conflict with efforts to control the ACTUAL opioid (Fentanyl) crisis.
Do not trust anyone but yourself, family, to keep paper medical records. A PAPER phone record, despite phone calls being mostly useless, is helpful should you ever go to court for help or relief. Time, Date, actual name of whom you speak with (good luck with that if the V.A.!) and the reason the call was made to or from you. Keep it short so you can keep it up.
Sad truth. Doctors are isolated, insulated, automated away, played like fish. I do not know what to do about this. Doctors are blocked from reporting harms (of any kind) by other doctors or the hospital staff- they are shunned, end up in dead end, dirty work, jobs if speaking up or lose their career or retirement. This is why patients must speak up while Navy Seals, Doctors, others, cannot.
Ham
My name is Jennifer Strange and I’m 45 years old. I have Degenerative Disk Disease (DDD) in only my cervical spine, for now. I was diagnosed with when I was only 31, back in 2004. I underwent the first of 4 surgeries to correct the problematic disks in C5-6 in 2004 which failed, then had surgery #2 in 2005. In 2006 I had surgery #3 where the surgeon installed a PEEK device at C5-6. By this time I also had collapsed vertebrae in my spine so the surgeon installed 2 rods for support in surgery #4 in the back of my neck.
Before my surgeries I was a very active wife and mother of 2 young boys. I rode horses, I was a volunteer firefighter and E.M.T., I worked as a pre-school teachers aide and lived a very active and fulfilled life. Since my diagnosis and surgeries, my life came to a standstill until I was properly medicated.
After my 4th surgery I was weaned off all medications the surgeon had placed me on to see if the surgery was a success. It was not. I still suffered from uncontrolled headaches, muscle spasms, neck pain, right side weakness and pain in my shoulder, arm and hand.
I have tried every modality they have offered to me in hopes I could avoid opioid medications in high doses, as I was only on five 7.5 Norcos per day at the time. I went through 4 nerve oblations, including RF Ablation, in my head and neck while awake, I’ve tried the TENS unit, physical therapy, massage therapy, trigger point injections, facet joint nerve blocks, steroid and cortisone injections, ultrasound, RF treatments, light therapy, biofeedback, meditation, heat, ice, and exercise all with no success. All this time I suffered in silence at home, mostly staying in bed or on the couch where my family could only watch me suffer and could do nothing to help me. The pain I was going through was unbearable and the pain the procedures was causing was just as bad and did nothing to the original pain it was supposed to be relieving.
Finally I was sent to a private pain clinic in 2015 where I began a regimen of opioid medication and other medications that finally began to give me my quality of life back. I still continue to do meditation, heat therapy, lidocaine patches, antidepressants, Topamax, for nerve pain, and occasionally go to a massage therapist, but find that it only helps me for a few hours and is not very cost efficient nor pain effective, I still do strengthening exercises for my neck and body as well. As time progressed my pain increased as did my prescriptions. I also went through the standard changing of the opioid medications to see if one would be more effective than another with great success and a great quality of life. I was up and out of bed everyday, took care of my kids. I was active in their schools. I was active with my husband and could go shopping and on vacations. I was able to volunteer with an animal rescue group. I could drive without pain. I could cook and clean again! Things many people take for granted, I was happy I could do again!
Then, the CDC guidelines came out and my world began to crumble in the winter of 2018 when the pain clinic I was going to decided to start to forcibly taper all of their patients down, regardless of how stable they were. I was a completely compliant patient that had submitted to and passed urine screenings whenever asked. I have no history of abuse nor have I ever “run out early” or had a problem with any of my prescriptions! They are treating all of their patients with a “one size fits all” mentality and are now abandoning the Hippocratic oath they took when they became doctors to “first, do no harm”! My medications have been cut by 1/3 now and I’m in agony!! I no longer can do what I was doing just 2 months ago and am also dealing with withdrawal symptoms now on top of my pain. I can no longer drive for long distances without excruciating pain in my neck and right shoulder and arm. Cooking and cleaning are painful again. Spending time using my right arm is nearly impossible. It has taken me almost 3 hours just to type this because of the pain it has caused in my right arm and the headaches I’m suffering from now due to the medication decreases. To say my quality of life has taken a turn for the worst would be an understatement and I now live with a constant pain level of a 7 or higher on some days. I had been at a 5, which was my goal, before I was forcibly tapered.
I blame the CDC and the my doctors that have blatantly misread and misinterpreted the guidelines. I’m frustrated that I was doing so well and now that this has happened what will my future look like? There is no cure for DDD, I will only get worse and will need more surgeries. Only 90MMEs will never control my pain for the rest of my life.
My hope lies in the Don’t Punish Pain Organization and other groups like it. Hopefully change will come soon enough for those CPPs that are about to give up and take their own lives. I, thank God, am not there. We must be heard. There must be change and it can’t come soon enough for chronic pain patients. The CDC guidelines must be rewritten so it is understood that the 90MMEs were not meant for stable, long term use patients that are under the care of pain management doctors. Doctors must be allowed to get back to following the oath they took to “first, do no harm”. It must be understood that there is no “one size” or “one doseage regimen” that fits all patients. We are all individuals, with individual bodies and injuries/disease. We have undergone different surgeries and therapies that may have caused new injuries or unwanted side effects like scar tissue that causes even more pain in an already pain-riddled body. We are not criminals or junkies. We do not want to be on these medications, we have to be to have any quality of life, to do the what the average person finds mundane we find it liberating. We want to be able to go for walks with our children and spend quality time with our spouses, not be stuck in bed or a wheelchair.
My sincere thanks to whomever for taking the time to read my story and my plea.
I am an eighty-three-year-old man who has been on pain meds now for18 years. My pain history includes the following: Due to an accident, two back surgeries consisting of numerious procedures to correct the problem. I have two 18″ Titanium rods in my back that are a source of continuous pain. Also, both hip bones have been harvested for material to fuse certain parts which also contribute to my excessive pain. Also, shoulder surgery that never took properly from the same accident; A broken neck which resulted in three surgical procedures to attempt to correct. The neck is fused and stiff and continues to be a source of pain. – While in the recovery of knee surgery I contracted Sepsis and very nearly died. After a month in the hospital, I found that I could no longer walk or use my arms properly. I will be in this condition for the remainder of my life. The doctors tried many pain drugs and finally came to a solution that provided me with pain relief and a chance to live out my life some-what happy and doing things that I enjoyed doing.
Then came the news that some jerk, who has never seen me, sitting in some plush office that figures he knows better than my doctors, what forms of pain treatment I should have. Now, after I have had my pain relief meds cut way back, I have to tell you that I am in much more pain and have very little interest in life at all. I spend most of my time in bed waiting to die and trying to find some way I can get past the increased pain. Furthermore, I have no medical professional treating my condition any longer. All they do at that office now is continue making sure they comply with all the government regulations that have been imposed on them. Not any interest in my needs any longer. It disturbs me that government even has the power to infringe into peoples lives like this. What is next? I wish they could know what they have done to this old man who wanted to live out the last few years of my life happy. Now I must have to cry for my poor 86 year old sister who is going through the same thing I am. She hurts continuously since her meds have been cut. I pray that God will help my dear sister. Perhaps the government will allow Him to do do that.
Thank you guys for attempting to help in this vial, immoral act.
I never thought pain could ever be so horrible and the worse component of it is my beloved family who would normally protect me from being hurt cannot see when I’m in a horrific flare up, which often feels like a hot poker is going through my chest into my thoracic spine where much degenerative damage has been done and continues to gain strength with age. I am 40. My spinal injuries began from being anorexic and bulimic starting age 12, I over exercised daily for hours. My blood sugar dropped and caused a hard fall first. Landing induced a seizure I’d be tightened up so badly and bones/spine weakened from malnourishment, it created a couple of thoracic compressed fractures. Thus it was so painful I couldn’t breath. I was hospitalized and wore a back brace. Upon the return home I got back to usual schedule of starving, hours of exercise, weight fluctuated, but the spinal pain grew with the years. I ran frequently and extensively causing more premature malformations of my young still growing spine specifically. I was only 12 when it began when I attempted to eat, I’d become overwhelmed with fear of weight gain and induce forceful vomiting. With each fall,run,lifting of weights over my body weight, 200 stomach crunches 5 times a day, little did I know then it was causing the most painful conditions for my spine to try to thrive from. I didn’t feel the pain it’d eventually unfold to and even my left knee was seen by a Ortheopedic surgeon at 17. He explained I was losing far too much cartilage (malnourishment) and the fire eful running also tennis, I was given injections and prescribed medications to help with the pain and anxiety. They helped I’ve had to wait until I am “old enough” to get the surgery that I need full knee replacement. I’d also drink alcohol at times with friends or a boyfriend and I said I was trying to kill my pain but I so desperately did not want to be dependent on pain medication. So I tried all things naturally healthy and supplements. Eventually the pain became too bad in thoracic spine to esophagus,they thought I had gerd, we later discovered I have a hernia.seceral ulcers but the intense pain is from a disease called Barrett’s esophagus. Also my GI dr said that my esophagus has a hypersensitivity. Through decades I’ve have periods of controlled food consumption as anxiety meds prevented the panic. It’d always come back though. It was my only feeling of control as my family was not connected by healthy communication. I saw drs. And specialists about my spine but other than compression fractures they couldn’t understand how or why it hurt so I’d never get true treatment. Eventually to make my life functional I was told about methadone clinic near by. I’d never used or abused any type of illicit drug and had only been prescribed a small pain killer for few years,and anxiety controlled medications that did and does help greatly. Do to my family knowing I was suffering but needed to have a way to control my pain,I eventually got on methadone. It did help stop feeling the increasing pain but was too strong and I often would run longer or lift weights longer or heavier increasing the I juriesbut I didn’t feel it because that medication was too strong. We just didn’t know it at the time and didn’t have a real physician that understood how painful my condition was. After years of being on methadone, working out for hours often starving stil or purging but taking many natural supplements. I got myself off of the methadone when I researched it could worsen bone density issues as I got older I did have osteoporosis and osteoarthritis forming in spine and arms hips. This was agitated by the years of hard intense running and exercising. However I began to feel the new injuries after I got off of the methadone. I sought out a good understanding physician but had no luck and thus tried to use natural methods to handle the pain. I also did begin to eat sometimes mostly healthy smoothies w supplements because of esophagus, smoothies were easier. Yhroughny 30s more evidence was found of my co diction. My pain in the knee and my esophageal pain and thoracic spinal pain was so intense it’s been difficult to sit long,travel,wear any size heal, carry tho ha,running had to stop,. Also the purging began to be co trolled ask was in the anxiety medication that prevented the panic and feeling of having to purge to feel in control. I was involved INA car accident where my car was struck and totally by a van worsening my spinal condition and pain. After more hospitalizations we found I also had chronic pain syndrome, scoliosis from the multiple thoracic/cervical fractures and bulging discs also osteoporosis. Kyphosis was found the bending in of the upper spine (which often I wonder if it’s contributing more to the intense esophagus pain it feels like someone twisting my esophagus like a wet rag. The shouting pain in my knee feels like a thick knife being shoved under my knee cap even when I am still,like right now. There have been many findings with my spinal co fituon abd at 40, many days are spent inextra loneliness and isolation due to this pain even with the pain medication that has allowed me to live and to think and fubctuonon amoebas levek regardless of pain so intense it feels like it will overcome me. It is terrifying and only getting more difficult to live with. I am treated by my physician/neurologist however no counselor and I cannot work but o want to live so badly ivenot founds way to. My family and friends do not u sweat and how horrible this painterly is I try to live to fight another day. However I don’t know where to start. I only take those two medications and have to sit in isolation often. I do want to use my story to help others and to all I cantogekp represent this misunderstood disease. No one sees we are being hit by a bat as hard as someone can hit . It is invisible and that in itself is very frightful and difficult bid studies hatd in college to become a counselor however not being able to sit long and move in certain ways many things has deemed me disabled due to these injuries. I am waiting on disability but everyday I do not notice my own life. I am isolated now due to these invisible battles with horrible pain. In averagyny medication helps me to have quality of life, however, it’s irecebted marriage and career and depression has been present lately. Many evenfamiky do not understand and even pass judgement. I pray we all find our support and purposes as well as care that truly increases yality of life also try very hard to find the reasons to laugh daily rather than give into sadness doubt or loneliness God bless,
Hanging on, Amanda K. O’Neal.
While visiting a friend in San Antonio, l was assaulted by 2 illegal immigrants who were trying to steal my purse. The attack occurred in 2011 and at the time, l was a physically active 42 year old wife, mother & RN who enjoyed new experiences. Everything changed after that day. According to the ER doctor, my neck & spine CT scan was fine. I assumed the awful pain would improve over time. l had multiple chiropractic adjustments, massages, etc… but things only got worse. I had an excellent family practice doctor who prescribed pain meds for me, and it was he who discovered that my initial CT was misread by the emergency department. He was my PCP for 20 years, through 2 bouts of kidney stones & labor pains that l reported as “feeling like gas”. He KNEW that l had a high pain tolerance. He realized that something was very wrong if l was crying so hard from pain that he needed to give an injection in his office. When l was finally seen by specialists, they wanted to do surgery. But since l began to improve with acupuncture, meds, PT & various other non-invasive treatments, l decided not to have surgery. This choice was not well received by the orthopaedic surgeons & they felt that my PCP shouldn’t be prescribing opiods to me. (I was weaning down on them as tolerated).
When l first moved to SC in late 2012, l could not find a PCP who would accept me because of the pain meds l was on. I flew back once & obtained 3 months supply from the hospital employee pharmacy (this was permitted at the time). My doctor & l continued to communicate regarding weaning, which l was able to do pretty quickly. I no longer needed the Fentanyl patch, but required a pretty high dose of Dilaudid.
I was diagnosed with aggressive breast cancer in January 2013. I was 42 with no family history, so l opted for bilateral mastectomies with chemo and a year of Herceptin. Through the hospital system & cancer center, l found a wonderful new PCP who worked well with my oncologist & surgeon. My surgeon got me into their PM program as well. That’s when the nightmare began…….
The PM was very cold. Despite the severity of my spine & neck pain, all she wanted to do was WEAN, WEAN, WEAN. I signed the PM contract with her which cleary states that she is the ONLY doctor allowed to write pain meds for me. I saw her shortly before my cancer surgery, central line placement & first round of chemo. I was stunned & began to cry when she tried to wean my meds again. I begged her not to reduce my meds because of the painful surgery l had coming up. Her reply “I’m treating you for back pain, not cancer pain.” I felt like shouting to her that my parts are CONNECTED. I am a person, not one single body system. There comes a time when we can’t be weaned any lower. Degenerative & bulging disc disease get progressively worse & most people end up needing higher doses of medication.
This doctor has a reputation for being unreasonable. As a matter of fact, my new PM physician has taken on quite a few of her patients. I’m grateful to have him, and he never treats me like a drug seeker. I follow the rules, don’t take illicit drugs & plan to avoid surgery for as long as l can. If l didn’t have a compassionate PM doctor who does his very best to treat pain appropriately, my quality of life would be gone.
Here’s my story, short-version:
I first started having chronic pain when I was 4 months pregnant with my son back in 2007. I toughed it out at first but I ended up seeing my PCP and rheumatologist & getting some treatment for RA & fibromyalgia.
Then in 2009-2010, things got REALLY bad: it was eventually discovered that I had a 9-inch long benign hemangioma tumor going from the spinous process of T4 to my left shoulder blade, which was unbearably painful, but only one neurosurgeon believed me and did a T4 laminectomy & tumor resection. He said this tumor ended up eating away part of this protective coating around my spinal cord and that I would always be in pain from it. Well, the surgery was a success because it took care of most of the pain.
Anyway, fast-forward to today:
I’ve got another aggressive vertebral hemangioma at T10, but once again, no doctor will believe that I’m one of the rare 1% of patients with symptomatic vertebral hemangiomas!
I’ve been red-flagged, black-listed, called many different names (besides the usual “drug-seeker” & addict). I’ve been screamed at by ER nurses (among other verbal abuse), verbally and even physically abused by EMTs (can’t prove it, so they’ve told me…), etc.
Today I’ve got an OK pain doctor, but he’s “injection & procedure happy” and has expressed fear of going to jail and such to me in the past. He’s reduced my meds to the point they barely touch the pain. 2 of my former pain doctors left pain management out of fear of DEA persecution and I don’t blame them.
Like I’ve said before, I could write a book! This is just a basic outline of my story. If it weren’t for Kratom, I would already be dead because the constant pain I would feel without it just isn’t compatible with life!
Please advise me
I have been struggling to find care to keep my life livable without spending the majority of my waking hours in pain. I have degenerative disc disease, a damaged bulging neck disc, inoperable seperated and calcified damaged bone in my right heel, torn left knee cartilage lymphodema, nerve damage drop foot and limited control all down the right dominate side of my body. I have discoloration and swelling in my limbs and venous stasis.I was in a wreck that caused many of these injuries . The wreck also caused injury to my colon leading to a large segment of it being removed. The surgeon after having to remove more than expected wrapped a portion of my colon around my ovary, binding nerves in the bundle. I now have a cyst on that ovary where the wrapping was done. I have been told if they put me to sleep to remove the cyst the likelihood of waking me is questionable at best and might not alleviate the pain.
… I began having pains so bad when trying to walk they caused repeated falls. In Nov 2016 a fall caused a complete tear in my right shoulder . I was operated on to put my shoulder back . There were few choices for sedation due to adverse reactions. The operation was not successful and efforts to rehabilitate my arm have been painful and unsuccessful.
During my recovery time I was given minimal doses of pain medication never quite relieving my pain. I developed a frozen shoulder almost immediately after my operation requiring another procedure which was unsuccessful. I have had several rounds of physical therapy with minimal to no improvement in function .Now I am having motor control issues from the effects of the sedation including swallowing and speech issues along with the difficulty walking . I have sought a neurologist who can diagnose the particular neeve damagei involved but I have yet to find anyone who will take my case. In the meantime my only source of relief, even while on palliative care , is minimal pain medications, liquid vitamin and fiber filled smoothies to try and prevent blockage. This has been a precarious balance. I am not very ambulatory at this point . I have developed venous stasis in my legs that I have to use inflated boots to pump the blood that pools due to the circulation being cut off . I am in constant pain that cause more immobility and often tears. I feel I am meeting more problems in seeking treatment than real help.
Please help me ! I want to function higher and get my life back at least in part. I feel I have much more to contribute and am pleading for the chance to do so !
I am so angry about this! I have a prescription for hydrocodone for my chronic back pain – degenerative disc disease, scoliosis and arthritis. I only take it as needed and have done everything possible to heal myself – I eat well, stay slim, exercise and have lots of family and friends who provide love and support. I’m really healthy otherwise.
But most of the pharmacies in my community have stopped carrying opioids because of the crackdown. They say it is just too much paperwork. The one pharmacy I found that carries it makes me jump through so many hoops to get my prescription filled, they make me feel like a lowlife. They actually smirk at me! And I am a well known upstanding respected member of my community. Can you imagine how they treat others not so well known?
My doctor gives me the prescription after making sure its not hurting me – all my lab test results are excellent. I never allow myself to take much, only as needed. As I’m not ever going to recover this situation really infuriates me. I don’t know what to do. I live on a tropical island and can’t drive to another state and can’t order it online.
I’m tired of feeling like a pathetic beggar, grovelling for mercy and sip of water. It’s barbaric, oppressive, fascist and a grossly misguided, hyper-vigilante federal agency relevance and budget booster for the DEA, which felt threatened by a reduced war on drugs with the sweeping state legalization of both medical and recreational marijuana. Our government regulatory and law enforcers are desperately needed fighting the insidious grotesque methamphetamine problem, a re-emergent cocaine crisis, the true “opiate” crisis born from heroin and illegally manufactured fentanyl. Instead, they bully and marginalize those most unlikely to violate laws or abuse what is so effective and needed. It’s become a money grab for profiteering medical specialties and presumed alternative prescription drugs as though we don’t spend enough of our money on insurance, doctors, tests, imaging, surgery and medication of which the least expensive and therefore superior from a cost benefit standpoint happens to be appropriately dosed prescription narcotic medication.
Furthermore, I do NOT take any medicine to “make me feel good,” of God forbid! I use my medicine as prescribed so I function and don’t feel miserable, stressed out and impaired by chronic pain from raw, damaged and raw spinal nerves resulting from a combination of medical negligence, an ergonomic torture chamber in which I worked, and a rushed butchering billed as outpatient L-5 surgery. I’ve had three surgeries to clean up that mess left by a presumed top neurosurgeon at my state’s primary medical university hospital. And I’ve gone broke from my share of the costs from procedures, specialty referrals, imaging and now, doctors want me to take more medicines thought to relieve pain but in reading about them, create problems I currently do not have, and many of which are potentially fatal.
I dream of having again a doctor whose judgment I trust and respect, and one that is based on his/her diagnosis, trust and compassion for me, and a desire to help, treat, heal or make more tolerable and functional this aging embattled soul and frame.
Well, I dont feel it is only for Chronic pain users. You cant get relief even after having a surgery! I watched my son, in the recovery room after a surgery, being called a “Drug Seeking Patient” by the doctor! All he did was ask if he could have something for the pain! The doctor screamed at him like a maniac and walked out of the room. I know, I was standing there. I also just had carpel tunnel surgery this past week and was told to take (anti inflammatory) when I got home. Lets not consider the terrible consequences of taking that medicine all the time! This new law and medical ruling is way out of focus. Let a doctor be a doctor and help ALL patiens who are IN PAIN.
I am a Chronic Pain patient since 2008. I have MS, Fibromyalgia, and Degenerative Disc Disease of my cervical and sacral spine. Every morning when I wake up, I feel as if I were hit by a bus. I take both NSAIDS and a pain pill in order to relieve my pain to the point that I am a “functional” human being. If I do not take my NSAIDS, I am miserable. If I do not take my pain pill, I am miserable. It is the COMBINATION of both over the counter and a prescription that provides me relief.
I take my prescriptions AS PRESCRIBED every single time. I do not spend $200 every other month, how often I need to see my pain doctor, lightly because all my illnesses, combined, have caused financial devastation for my husband and I. I do not take medication that’s helping my pain “for fun”. Most pain patients do not abuse their meds. It’s when kids or other people in the house start looking for ways to get high that there are problems. I keep my meds locked in a safe to keep others from stealing them. I do MY part to prevent diversion of my prescription. Why can’t legislators give us pain patients the dignity that we deserve?? We don’t need doctors and insurance companies controlling OUR behaviors. We need them to tackle what the REAL problems are: heroin, meth, coke, illegally obtained fentanyl, crack, etc.
I am a 62 year old mom of 5 boys, wife to my husband for just about 35 years. About 20 years ago, I was being treated for chronic bilateral back pain with sciatica, herniated disc, and lumbar degenerative disc disease. I was prescribed a strong pain reliever, extended relief and a shorter acting pain reliever for break through pain. It was life saving!!!! I was able to function, work at our business with my husband, take care of my family and do every day tasks. Now with this “Opiod Crisis”, my Dr. tells me she has to cut my meds down. I have gone down to way over half of what I was taking and I’m told she has to take me down more yet. I have thought about ending my life. More than once or twice. Now since my original diagnosis I have Scoliosis of Thoracolumbar Spine and Postural Kyphosis of the Thoracic Region. So, from someone like myself, I don’t abuse, sell, or give away my medication, why do I along with so many people like me, have to be taken off a medication that offers us to live a somewhat productive life with almost bearable pain????!
Even though I have had 2 very severe horse-related accidents decades ago & have had long, hard years of excruciating chronic pain and some 22 surgeries over all that time, I am a devout Christian & have always still considered myself blessed, especially after I found my current chronic pain doctor, whom I’ve had for almost 16 years. I pray daily to God & thank Him so much for allowing me this much control of my pain.
My pain doctor has had to perform many different outpatient procedures each year to help control the pain from the nerves which have grown back after radiofrequency cutting under fluoroscopy (x-rays), and he has done both anesthetic & steroid injections into my neck & lower back to help control my pain. In addition he has had to prescribe several different medicines to help control my daily onslaught of pain, including opioid medications. I have always followed through carefully with my pain doctor’s regimen & instructions, & have never had even 1 instance of over-dosage with them.
Now, however, is a different story, since regulations placed on my pain doctor have made him have to severely cut down on my usual dosage of the pain medication, to a level which cannot even allow me the comfort of the normal life I once knew.
Since the pain medications have been so drastically reduced, I now dream at night of being in such severe pain, & when I wake up from that dream it’s because I AM in such severe pain; and as I arouse to consciousness, tears automatically start to stream down my face without my consent, because my mind is once again realizing the pain which is coming to my reality again, before I get up to take the minimal insufficient dosage that is now allowed me by new regulations, which are NOT my doctor’s fault. He himself is being pressured & forced to reduce his pain patients’ medications to a one-size-fits-all dose for everyone, & he cannot protest or his license & practice will be imperiled by the authorities forcing this, all due to the current opioid drug crisis.
I know there is indeed a true opioid drug crisis in society right now, but for Heaven’s sake, please put the blame where it belongs most—on ILLEGAL drug importations, manufacture, & sale—NOT on us wretched poor sufferers of legitimate chronic pain & surgeries due to legitimate, real-life accidents! I follow the law, my doctor’s requirements, buy at legal pharmacies, & watch my prescription dosages carefully. Please—not every person’s body requires the same dosage of medication—that is the art of medicine left to the medical doctors to prescribe—NOT to government regulations!
I am literally at my wit’s end at this minimal and already insufficient dosage right now—and I just found out that a “committee” has already agreed to lower this minimum dosage drastically again in the fall! I had tears automatically streaming down my face as I was crying for real in my doctor’s office when I was told this latest news!
I cannot attend this Don’t Punish Pain Rally physically myself because I cannot endure the torture of trying to drive for hours & walk around in the rally with the minimal pain meds allowed me now, but I desperately beg of you this:
*Please have a heart & a conscience for us desperate pain sufferers who, through no fault of our own, have had serious severe accidents happen in the past & have had to give up so much already—my career, any physical activity, & enjoyment of even sedentary activities like reading because it’s too hard to think for long through so much pain. Please, it is already unbearable to have to live & suffer with this minimal dosage of pain meds as it is now, and if these extreme reductions continue we will be forced to also give up even more—any quality of life at all!
*Please try to understand the desperate plight I & others are going through now, and please reach out & help—let the chronic pain doctors decide on our individual pain medications—it’s what they are trained to do, & it is NOT one-size-fits-all!
I have scoliosis and suffer near constant back/hip pain. I’m now being denied my pain medication due to the changes in the laws regarding the meds. I’m a middle-aged woman with no history of any type of drug/alcohol addiction, am a contributing member of society, educated and responsible with taking medication. None of this makes a difference though. I still cannot get prescribed my medication for pain. I’ve been made to feel guilty any time I’ve asked for pain medication and my pain complaints belittled. I’ve tried other routes for pain control – over-the-counter meds, physical therapy, chiropractric intervention, etc. to no avail. Please help get the laws changed so I (and so many others) don’t have to continue to suffer needlessly even though the pain medication I need is being manufactured but is not available to deserving patients. Thank you for finally giving us a voice
I have degenerated discs in my lower back as show on an MRI. The pain has been with me for at least 15 yrs. My prescription was recently classified to a class higher making it a controlled substance. I receive No refills and now my Doctor is asking not to take the prescribe dose but to lower it. I have been hearing terrible stories of Doctors worries more about their license than treating patients in pain. I am 63 yrs old and paint houses for a living. Climbing ladders and stairs every day. I can’t work without pain management. I have anxiety every time my refill comes due. I need support from this site. I don’t drink or use any other drugs.
Hello, I’ve been a chronic pain patient since age 13 diagnosed with juvenile Psoriatic Arthritis along with 80% body coverage with psoriasis. Growing up wasn’t easy being in pain while all of your friends are running around playing and you can’t bear to walk never mind play. I managed to get tough and get into hockey cheer leading and that helped to combat the symptoms for the most part until 2004 when I was diagnosed with Fibromyalgia. That’s when my life changed forever. I was still coaching competition cheerleaders and had to stop. Then came back surgery #1, the Dr clipped my sciatic nerve which left nerve damaged for life with severe nerve pain, numbness, and tingling from my waist down to my toes! 7 surgeries later ( back and neck) I’m now 49 years old. All of the drs I’ve seen in Rhode Island haven’t got a clue what to do with me so I’ve been bounced back and forth for my whole life. I now have a pain pump in my stomach threaded to my spine and it delivers constant pain medicine directly to the nerve root and I’m not getting the relief I should be getting. I now see a Dr in Massachusetts and because of this opiate epidemic she refuses to listen to my pain issues or give me pain pills for breakthrough pain. I also suffer with Major Depressive Disorder and by not controlling my pain it has sent me spiraling backwards to the point I’ve been bed ridden for over a year and have lost 35lbs and all muscle mass! This Dr just wants to peg me for being a drug seeking liar when she won’t even acknowledge my issues or do an MRI to figure out what’s going on!! I’m completely frustrated and I get suicidal because of the pain and frustration. This epidemic is literally killing me because the doctors are too afraid of losing their licenses!! Its BARBARIC is what it is!! I’ll be attending the next rally in RI. I feel for anyone in a similar situation and I pray for you as well. Stay strong!! ❤
Is a synthetic (you know the one, it begins with a U and sometimes a T) at its lowest dose all we can get..??? Really?? Because of losers that ruin it for us and fascists who will hopefully never ever have to know pain anywhere near close to mine, making the rules? That’s fucking asinine and sad at the same time
I have reason to believe I am being discriminated against due to a family member’s accidental death involving a very powerful opiate, and I’m livid about it to say the least. Livid isn’t even the word – it’s an understatement. Next time you give me papers and lectures about the opioid crisis after my not routine at all colonoscopy because I’m so young, I’m going to give them back so you can shove them right back where they came from. Stop telling me it’s such a shame, because lady, don’t I fucking know it. When I have a god damned oncologist telling me she has end of life patients who have it worse than me that she can’t write scrips for because she has to jump through hoops due to laws… When I have her telling me I need to find a doc comfortable enough to prescribe SYNTHETICS, let alone the real deal prescriptions, you know there is a fucking problem. When CVS only offers you 20 or 40 at first and divides your prescription, there is a fucking problem. When there are notes that you are somatoform/idiopathic in your records, there is a problem. I cannot figure this out on my own because as much as I’ve learned, I’m no professional. I survived a semi-cancerous huge thing and lost an organ, at what cost. Only for people to tell me it isn’t that bad and that someone with CP who needs their butt wiped has it worse. Just what I needed to hear. I’d truly rather have CP and not be consciously aware of my misery/what’s going on… If anyone’s wondering, I’ve been fed gaba meds and steroid injections for my chronic MS hug and sharp pain, constricting around my body and aching every single joint. Extremely high CRP and sed rate ever since my semi cancerous ordeal. I’m not professionally diagnosed because “no one would touch me” BUT My spine and body are literally breaking down due to inflammation that they refuse to find the cause of… So, until then. Whenever the hell that may be, if ever