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I have four dried out discs in my lumbar spine, plus spinal stenosis and a large herniation. I am 31 with three young kids, an employee in the outdoor recreational industry, and previously very active. I went from hiking, kayaking and baby wearing to not being able to pick up my toddler most of the time. I’ve had my condition for ten years and only now am I at the point that I’m willing to take narcotics (which I didn’t even take after my C section). I am on the lowest doses bearable because I am afraid that any higher will raise flags and get them taken away, and without relief, my day is over before it begins. I am terrified for the future where I know my pain will get worse but my pain medication will likely be stalled or taken away from me altogether if the powers that be see fit. I am about the lowest risk demographic for narcotics abuse (particularly given the fact that high doses make me vomit), and I’m still terrified of being labeled an abuser. My pain will only get worse and I will soon have no options. I feel like I have no future once my options run out.
I have had the misfortune of imperfect health resulting in having to use pain medication to reduce my level of pain to a tolerable level in order to live a fair life. I have fulfilled my duty of twenty-one years of military service and a decade of postal service, ultimately having my career cut short due to disability. It is not my intention to make my case for having to take pain medication but I see it so often, people trying to explain why they need it after experiencing a negative incident in getting pain medication but that’s a doctor’s determination and we can’t all assume the doctor is wrong can we? What has happened to society and their perception of doctors? Is it similar to the perception some have of police, they speak badly of them until they are needed? I don’t think so. I feel an overwhelming pressure coming down from FDA/CDC/? levels, probably from the top. I’m not one to speak negatively about our president, but this has to be from him. His wealth and so far good health has misguided his judgement about opioid medication and he feels it needs to be stopped and thus the trickle down pressure to the patients. It is my opinion that it is the power of the vote that will change this situation, voting in a president, governor, senator with the sense to stop this ridiculous attack on patients that need pain medication to survive and start focusing attention on the illegal sector of drugs that are the true enemy. Fentanyl, heroin, illegally made opioids should be the true center of attention. I for one will not stand by and watch as innocent people are robbed of life just because someone voted into office thinks legally and responsibly used opioid medication is the cause of the addiction and overdose epidemic.
Additionally, if you are a patient who is prescribed opioid pain medication and don’t feel you need it SAY NO. If you know someone who overdosed on opioids STOP BLAMING THE RESPONSIBLE USERS. The epidemic is people who crave to get high on anything they can get their hands on, not the patient requiring pain reduction to live a normal life.
I have suffered with no pain relief since I was 14. I was hit by an uninsured driver. Shortly after, excruciating migraines began, along with mild back pain which intensified. Over the years until again in 2015 I was hit from behind at a red light.
This exasperated my back issues and after an MRI I was found to have a total of four herniated discs, stenosis of the spine and degenerative disc disorder, alongside horrible arthritis. This started with the first accident and had progressed and worsened over years of being a daycare worker, house cleaner and massage therapist. No doubt the wear and tear on my body carrying seven children full term.
Each birth was 100% completely natural birth with NO PAIN MEDS. Except the first in which I had a failed epidural which caused my migraines to increase in frequency and strength for years after! That is one reason why I will not have an epidural for my back – it is the scariest thing in the world to me.
I am educated on severing of the nerves by laser. I have been told by people who have had this that the pain comes back, and then the pain medicine can no longer reach the pain because the nerves have been severed.
My husband has had cortisone injections and says it left him in worse pain than he was in prior to them, so I’m in objection to them as well. Especially I am objecting to these interventions and procedures that so-call manage. When everyone I have talked to from back surgery to procedures say that the pain comes back in some cases so much worse! And then the doctors refuse to medicate … this is absolute nonsense and not sound medicine to me. We are more than wild animals, we are more than domesticated animals, and should be treated as such. People have no problem getting epilepsy medication, tranquilizers or pain medication for their cats. Yet we as human beings receive no empathy! We as pain sufferers are pushed into procedures that leave you in the worst pain.
I’m a very tough woman however childbirth has an end to the suffering after a few hours, chronic pain does not! My quality of life after pain medication is exponentially better. I have been able to exercise again due to pain relief and lost 40 lbs! But now because of heroin addicts and pill poppers I am being told after only a few years of being pain free and enjoying life again, it will be stripped from me!
Due to my husband’s military status I always have a doctors. She has titrated me, again I am miserable and have already began to gain weight! I am so angry to be seen as a number.
Animals get better pain care and more empathy. This is a drug addict problem not a problem of the average chronic pain sufferer.
Because of these people who get away with misuse of their medication or just plain issues of addiction and drug addiction my quality-of-life is going to be taken away from me. My youngest child has just turned three so I still must be extremely active on a daily basis. We do not have the means to hire a maid or a cook so I still have to live a life of an average woman and I’m being told basically we do not care about your human suffering!
There is a lot of new information out there proving opioids are not causing deaths like the government is peddling! Honestly I believe that they are mixing in their statistics with drug addict’s. Do you not believe this is being looked at fairly. Nor that people with proven history of need with adequate medical documentation should be denied and left to suffer.
I was on morphine. After several years a pain doctor pulled me off cold turkey. All I get now is Tylenol 3. Since then my pain has gotten worse and have had over 30 shots in my back. I can barely function. No quality of life. Spend my days on the couch crying. Suicide has become an option. But I cannot leave my service dog. Don’t want much just some relief do not abuse. please help
Below my son hand-delivered a letter to my doctor’s home. She forgot to refill my prescription prior to the XMAS holiday. I got my script refilled within 15 minutes.
“I’m putting this into writing before I lose my mind. Your office doesn’t have an after-hour doctor on call. This incident has ruined another XMAS with my family.
I’m genuinely puzzled why I can’t get a simple refill accomplished that’s the same dosage for the last three years. I’m in full compliance. You instructed me to make an appointment in January 2020. Before 2017, I was a patient at TIRR memorial’s outpatient clinic. As you may recall, the scumbag turned my neck 360 degrees, strangled me, and left me for dead nude in the weeds on 12/24/2009. I slid on back naked with my one working leg in 40-degree weather to highway. When you’re laying naked on I-45, you stop caring what people think. I’ve raised my son by myself with NO help from his father. When I was lying half-dead in the weeds ten years ago; I remember pleading to GOD to save me for the sake of my son; it would have broken his heart if I died that morning. God did save me. The monster broke my neck, which led to a three-month hospital stay at TIRR. I was paralyzed from the neck down with C-5, C-6 injury. We can’t remove the plate out of my neck.
All the TIRR doctors remember me running my business out of the hospital. Back then, I had excellent insurance with Blue Cross Blue Shield that paid over $450,000 to put me back together. Before Obamacare, once you met your deductible, the insurance company paid. My secretaries brought tweezers to pluck splinters out of my behind while they held the phone to my ear so I could tell my clients their files were okay. By the grace of God, I was able to relearn to walk and save my business. So, I brag a lot that I have the same name and phone number since 1997. If they only knew how close I was to losing everything.
I continued as an outpatient at TIRR. The doctor at TIRR is a pain specialist for spinal cord patients. In 2013, he prescribed Nucynta (Tapentadol) ER, a new drug. I was thrilled to locate an effective medication that allowed me to drop the Gabapentin from by 85%. Decreasing the Gabapentin dosage was horrible. Short-term memory loss stopped.
I’ve taken lots of different medications to the point I felt like a guinea pig. When the health care debacle started, I suddenly was required to see my doctor every three months. Nucynta eliminated my constipation, which aggravates my condition.
When I first went to refill this new wonder drug, my Walgreens didn’t stock it. My secretary had to drive around from pharmacy to pharmacy since you can’t call pharmacies directly to inquire whether they stock opiates. She finally located a pharmacy after visiting OVER 30 pharmacies. With all the NEW rules, I would go to my doctor at TIRR and pay 250 dollars since he’s not affiliated with TIRR, which wasn’t covered by my insurance. Then drive to Recept pharmacy that’s 45 miles from my home and hang out for about 30 minutes to refill the prescription that costs $900 for a month’s supply. It was an all-day affair. There’s no way someone can keep their job or pay this expense. I’m blessed I’m self-employed and make a comfortable living.
After Obamacare, I’ve had to change carriers every year because they kept pulling out of Texas.
Then in 2016, Aetna left the Texas Health insurance business, forcing me to into an HMO with Molina. Molina didn’t accept TIRR Memorial. So now I had to pay full price for Nucynta, my doctor, and a room charge for $800. That’s a total of $17,072 annually, which is absurd. Yeah, I could have coughed up the money, but I refuse to be a slave to a drug. I’d rather suck up the pain. My doctor worked with me to solve this dilemma. He suggested the ER Tramadol since, at the time, Tramadol refills required every six months’ visits and a lot cheaper. I decided to wean myself off Nucynta, causing me to miss another XMAS and New Year in 2016. It was the most horrible experience. I couldn’t handle the pain without Tramadol. Since you accepted my insurance, you prescribed the Tramadol starting in Jan. 2017. I’ve tried alternative methods such as acupuncture, which doesn’t work and very painful. As I mentioned at our last appointment, I got hormone pellets to alleviate the menopausal symptoms that aggravate my condition. As you instructed, the ob-gyn performed my pap smear, which I paid $500 out of pocket. I haven’t had one since 2014. I’m trying to figure out what my insurance covers for $1168 a month. There are no other insurance carrier options for self-employed people.
I hate going to doctors or taking these rotten pills. I have no other choice because they get me moving and functioning. There are days I want to cut off my arms, but I need them. Without my medication, I’ll start to catch on fire, it’s like needles or rubbing your hand across a cactus. When I get upset, my neck goes into a spasm, causing me to be bedridden. My limbs are like a rubber band, and I can’t hold anything. I get that paralyzed sensation. I even begin to drag my feet, and my knees buckle. My fingers turn ice-cold with no feeling. Without the Tramadol, the pain interferes with my ability to care for my son AND deprives me of my enjoyment with my 9-year-old great-niece that has an intellectual disability who was planning to come to visit during the XMAS holidays. She has a room set up at my home here. She loves coming over. I guess I’m supposed to tell her she can’t come.
In Oct., you were slow refilling due to some error. I didn’t get mad at you. I picked up my prescription on the way to the airport. On Monday, my lender scheduled an inspection Wednesday in CA. You think my clients understand they’ll need to wait till I refill my prescription or go to the doctor. I’m not going to be able to underwrite my loans cause I won’t be able to focus on the withdrawals.
In November, I phoned in the order that took five days. Besides getting ready for Thanksgiving, I was in the middle of analyzing a new loan. I’m going to need to inform my clients sorry, I’m in the emergency room. Perhaps you can send a letter because I’ll be climbing the walls. I’m very respected in my profession. I’ve done this with the help of my doctor’s partners. I’m grateful. Without my refill, I’ll suffer from loss of income. It’s going to affect my clients who are depending on me to complete their financing.
I’ve repeatedly told you I suck it up and only take Gabapentin during the day so I can remain focused on my family and business. Go to my website … You’ll see what I’ve been able to achieve despite the chronic pain. My clients don’t know about my condition. I don’t allow it to get in my way. My arms ached in CA; it was hard for me to hide, rubbing my arms from the pain. That didn’t happen when I took Nucynta. So, go ahead please contact any of my clients to inquire if I ever seem strange or act like I’m on drugs. They’ll state – I’m always professional and quick to respond to questions and concerns. I’ve never slurred my words. That’s why I’ve been in business since 1997.
We live in a beautiful home that’s spotless, and I make dinner every night. I told you I landscape and even mow my grass for physical and mental exercise. I don’t drink, nor am I overweight. Oh yeah, I don’t know how I’m going to drive my car to see you next week when you open. I think I’ll be a hazard to the road with my blurred vision. I don’t appreciate anyone insulting or demeaning me about my medication. I didn’t stick my head in the sand or give up. I’ve persevered through all of this in severe pain. I can’t remove the plate out of my neck, nor are stem cells FDA-approved to regrow the axons that are sending misfiring signals throughout my body. I deserve respect, and my prescriptions filled without any inconvenience. I haven’t complained, but now I’ve had enough. I’m just trying to get by so I can take care of my family.
So, I spoke to Walgreens, and the kind pharmacist said “Oh No, that Tramadol is dangerous. You need to go to the emergency room. “Are you going to pay for that bill? The withdrawals are like going off heroin AND anti-depressant simultaneously. I sent the refill request to Walgreens (my ONLY pharmacy) Monday and went online just in case. I contacted your MA; she confirmed the order was received. I informed her I had no spares. I took my last pill today. She stated you would fill it after the high blood patients. I explained to her I’ve been on the same prescription for three years, and if I don’t take it, besides horrible withdrawals, I go into severe pain, which leads to high blood pressure. She didn’t seem very informed about Tramadol’s side effects. I recommend some training for her.
My mother spoke to her on Tuesday, and she said the prescription order would be submitted that afternoon. That didn’t happen. I’m enclosing the Tramadol warnings, AND the 4/2019 FDA letter states to wean patients off opiates gradually, and not stop them suddenly. My family is distraught and worried. My son needs me. He’s keeping an eye on me in case he needs to call 911. When this refill problem started on Monday, that was the 10th anniversary of my kidnapping. You don’t like me, that’s fine. I need my pills so I can locate another physician. You’re required to take the following steps.
There are specific steps that a doctor should undertake to terminate a doctor/patient relationship. According to the AMA white paper entitled “Ending the Patient-Physician Relationship,” these typically include:
– Giving the patient written notice, preferably by certified mail, return receipt requested;
– the patient with a brief explanation for terminating the relationship (this should be a valid reason, for instance: non-compliance, failure to keep appointments);
– to continue to provide treatment and access to services for a reasonable period, such as 30 days, to allow a patient to secure care from another physician (a physician may want to extend the period for emergency services);
– resources and recommendations to help a patient locate another physician of like specialty;
– Offering to transfer records to a newly designated physician upon signed patient authorization to do so.”
Thank you everyone for letting me express my situation. This was truly scary and a nightmare.
My name is Bill. Since moving from California to Oklahoma in 2015 my pain meds were reduced (I was prewarned by current patients in waiting room this would happen) by 2/3rds and no one advised me. I just received the reduced dosages and medications through the mail. My wife of over 25 years is a retired FNP and I was a medic. Ironic when I have two service connected medical problems: severe degenerate joint disease and heart atherosclerosis (which is ironic because my heart attack was in my 20’s not due to blockages but what is defined as “Variant Angina” or vasospasms which cause shortage of oxygen to muscle tissue). Recent medical problems significant – blood clots in both lungs, DVT left leg, left total knee, SSS for Sick Sinus Syndrome (where heart’s electrical conductivity goes on its own from rate of 30 to 150’s). So add pacemaker. Then a new onset of mid-back pain and loss of urine on occasion. Ironic heart Cath shows 30% blockages throughout. I am 69. My wife is 60 but totally and permanently disabled due to spinal stenosis and scoliosis.
My meds were reduced by 2/3 one-and-1/2 years prior to last Federal laws which went into effect. I think it is because of the COST of pain medication as a contributing factor. Outside pain management specialist advised the VA I was being under-medicated for significant degree and type of pain. Dogs get better treatment. I’ll say it again: DOGS get better treatment. The issue is defining what is abuse and the difference between that and TREATMENT.
A person with a legitimate medical problem deserves to be treated with the best pain management treatment available. NO ONE should be forced into implantable devices with risks where no one is willing to take responsibility for bad outcomes. My wife, I watch her suffer and can do nothing. I have asked for aid and an attendant. I need help but the system is set up to fail you, because health care providers don’t know to fill out forms relating them to your service-related medical conditions. My health care provider put everything on there and didn’t focus on my service related disabilities. The VA does not communicate if you have a problem with obtaining your pain medications.
When I had my total knee no one said your knee doctor will have to write for your long- and short-acting pain medication, so I ran out of long acting and suffered in severe pain for two days seeking help. A secretary reading my care provider’s notes told me what the problem was, but no one called or communicated with what the issue was. A DOG gets better pain management care than veterans. Am helpless and feelings of anger over people who make poor choices (look at the media – the more famous people’s children make bad choices but guess who gets the bad rap – the medication they choose to put in their mouths) deprive me and thousands of Americans, veterans and non, to suffer for poor choices! Dogs get better treatment.
CDC is a government-regulated agency using numbers from multiple sources that do not belong together. Counting deaths and crediting them to opiates, when other conditions exist and no autopsies are performed flaws credibility of studies. Again $$$$$$$$$ comes into the picture.
I feel sorry for people who have anxiety disorders and pain. They basically have been deprived of any potential for mental health treatment and the ability to live any semblance of life without anxiety. Why has the government chosen opiates as their central focus, when alcohol-related deaths rank much higher with the deaths of multiple innocent children and adults? Dogs get better treatment. When will we stand up and ask when did the patient’s condition, pain, quality of life and participation in treatment go down the crapper? Our society is more and more taking away the rights of many – over the poor choices of others. This is America. This is not okay. We must come together.
I looked for a rally in Oklahoma. Nothing is happening here. I haven’t located any resources for contacting public representatives – something I am not familiar with. God bless America but God help America use her resources – DOCTORS who should be making the decisions to treat veterans. Medication is restricted to only ONE maximum equivalent analgesic level … regardless of whether you are male or female, 500 pounds or 150 pounds, and unless you have cancer or regardless of your medical condition. Some people have options such as NSAIDS – a group of medications not opioids. I cannot take them nor can my wife due to the side effects to kidneys and gastrointestinal bleeding. Doctors need to be allowed to treat patients and not permitted to be placed in prison for fulfilling their oath. We don’t let our animals suffer. Why are we allowing the government to tell medically educated professionals how to do their job?
I have several examples of how the push to limit and even deny opiates due to new regulations in Ohio have been devastating. First of all, my father who is a stage 4 prostate cancer patient has been forced to go off his medical marijuana, which was recommended by his oncologist, due to rapid weight loss, in order to keep receiving his opiate pain meds. He is currently 110 pounds, down from 165. His pain contract forces him to choose between the marijuana and opiates. Even though he was doing good on the combination of the two.
I am a 26 year HIV survivor. Due to the side effects of the meds I am on, I have severe neuropathy in my feet. Am also suffering from neural damage in the spine. Have had a hip replacement in the past year. My HIV doctor and personal care doctor refuse to write prescription for my opiates. Sent me to a pain clinic which had no experience with long term big care. Immediately reduced the amount of opiates. Got me down so low that I got very ill. Then on top of that, started me on sterile injections which caused my arv’s to quit working. Darn near killed me.
Eventually raised the amount of opiates, out of guilty conscience, but not back to original amount, which were working. Am currently not able to function like before. T-cell count was very high before being forced to go to the pain clinic. Can’t rebound back to before the pain clinic changed meds. Also not able to use marijuana which kept my weight steady and was a useful anti depressant.
Crazy regulations are destroying many chronic pain victims in Ohio.
The new guidelines created by the CDC have punished many chronic pain sufferers including myself. Physicians who were already skeptical of prescribing opiates now will not give you anything to treat the pain that I suffer from every moment of every day. I also was taken off the pain meds that I had been taking as prescribed for nearly 10 years and helping me, with no warning or taper from my pain specialist. I had to go every month, pay out of pocket, submit a UA along with pill counts, always complied, no missed or late appt’s, no early refills, lost or stolen prescriptions. I have had countless MRI’s, CT scans, Xray’s, Lab work and in terrible pain from the conditions I have. I had blood work done because some meds didn’t work as well as others due to the way that everyone’s body is made different and metabolizes medications differently. I have had injections from two different specialists offices and both told me they should be lasting longer than the 4 weeks I was getting from them, and they both told me that they were no longer going to give me injections. I suffered in pain for 3 to 4 years before I was put on the right amount and appropriate medications. Now I am back to where I once was before and in my 50’s suffering from this cruel and inhumane issue that has been created from the so called “Opioid Epidemic”. I could write more and have used paragraphs. I am hurting too much for all of that. I Just wanted to get a part of my story on here to let those responsible for everything that has and currently is affecting all of us just trying to live the best they can in chronic pain of all types. None of us ever imagined living our lives in terrible pain, and being on pain medication to help us live a quality of life way less than we imagined. To our Government and State officials please let us have the access back to the medications we need to manage our pain and enjoy what quality of life we can.
In November of 1999 I was 7 months pregnant and I found my car stuck in mud. Thinking the spot I was on was flat, I tried to push my way out. I knew right away I had seriously screwed up. Not thinking, I tried to jump into the car to put it in park but instead, I was struck in the face by the door and rolled under it. I heard my vertebrae crunch. Luckily, I wasn’t paralyzed and, once the car came to a stop, I draggged myself to it, put it in park and shut it off before picking my 11 month old son out of the back seat and carrying him up the steep hill to the house I was living in at the time where I called my mother in law who rushed over and immediately called 911. I had layed down on the couch in my livingroom and couldnt get back up. I was taken to the ER and, given my pregnancy, no xrays were done. They gave me a shot and had me wait for awhile then got me up on my feet and sent me on my way with a prescription for pain meds. Those meds got me through the next few days but I knew something was wrong. I talked to my doctor and she wasn’t comfortable with xrays so she just kept giving me pills.
This went on for about a year before I, in all honesty, just gave up. Years went by with each doctor just shutting down as soon as they heard the word “pain” and shoving more pills at me. One more pregnancy passed and I found myself in absolute agony after just a little while on my feet. I was working at a hospital as an aide when I slipped in some soap in a patient’s room and fell. My supervisor sent me to get checked out and that is when my life changed. My L5 vertebre was heavily compression fractured and L4 and L6 were damaged as well. My dream of becoming a nurse died that night. Depression set in and, after another bout of pain pills, I gave up again. It wasn’t until I got out here to California that I FINALLY got help. The beautiful soul of a man I had remarried to gently encouraged me to try one more time. He held my hand in my doctor’s office as I told the doctor, “please, I am going to cry… I need help.” Yes… I cried.
I was feeling so hopeless and pain was just part of my reality and, honestly, I was exhausted and deeply depressed. I had tried for SO SO long to get by without going back on pain meds and I was just terrified that the doctor would just shove another bottle of pills at me and push me into a corner. My doctor hugged me, wiped my tears, and said “Mrs. Ferguson, I will do everything in my power to help you. First, let’s get some xrays and an MRI and, from there, we WILL figure this out.” With his help, we found out my spine was in really bad condition. Along with the badly healed fractures, I have encroachment, degenerative disc disease, and heavy arthritis. There, unfortunately, was now more. Years of walking wrong due to my spine had caused damage to my hips and knees and I had developed hefty arthritis in both. He prescribed pain meds along with physical therapy, “Let’s try this first, then we will look at our other options.”
For the first time in years, I had hope. Three rounds of physical therapy failed but, through it all, my doctor held my hand and encouraged me. He sent me to a surgeon who, like my doctor, was very compassionate and very open with me. My injury COULD be operated on but there was a considerable risk of it not working. He suggested a few options and, after discussing them all, I tried the injections. Apparently I am one of the extreme few that the injections are NOT a good idea for. The medication crystalized and caused more pain. We discussed other options but, in the end, he sent me to Pain Management. I was nervous… there is so much stigma attached to Pain Management centers and I had heard SO many horror stories. I’m glad he did.
After a month or so of going to pain management and having long talks with my pain management doctor, I was on the path to relief. I became more active, lost weight, started dressing nicer, I was ME again! I could stand for more than 5 minutes without being in tears! My doctor carefully tuned my medications until we found the mix that works for me. Things were going great until the opioid panic started.
The head doctor of my pain management clinic has been going to bat for all of his patients ever since, fighting for our rights to pain relief. Unfortunately, due to this whole mess, the restrictions have gotten ridiculous and I can’t get my meds adjusted even though it’s generally more than a year between requests. Lately my arthritis has begun to get worse and he can’t do anything about it even though my request hasn’t been for narcotics. I have gone days without sleep due to pain and it really upsets my doctor. I am not an addict. I need these medications to be able to get through day to day taking care of my amputee husband and autistic youngest son. I need my medications to be able to do anything other than lay in bed in agony. I understand the concern people have, I truly do, I was one of those people who just had meds thrown at her with no real support care for years after all. Taking away these meds would be torture. We don’t need prohibition, we need support! We need a hand not judgement.
Hello I suffer from chronic pain medical conditions like five of them know all serious that’s for sure and I had been under pain management doctors care. I will not name the medication but it’s a patch you wear for 3 days at a time. It is very powerful but that’s because I have a very serious pain throughout my whole skeleton. My bones my joints my muscles my back’s a mess forget about it. Broke my hip and in 2019 my orthopedic surgeon said it was one of the worst breaks for people in my age. People that are in their 90s would get a bad break but not a person 40 years younger like myself. I got two titanium rods put in 6 in long each supposedly and a titanium plate and titanium screws. He was right when he said you’re most likely going to have pain every day with it and I do.
Now my pain management doctor retired. But I have been under the care of pain management for many many many years and fortunately I was on the same dosage of these two meds to patch and a medication time release capsule are very effective. I don’t know about now with the hip and a spinal stenosis acting up that causes foot drop that’s nice and the rapper C got a whole bunch of stuff. that’s just the painful matters. Crohn’s disease abdominal pains but then I have non-pain related medical conditions as well that is serious now. For instance, my state has a medicinal marijuana program dial I was just thinking about this they say it on it doesn’t come in any other form except in smoking it. As far as the dispensaries are concerned the ATCs so they call themselves. I was hoping that people in I guess I have to join Facebook which I’m not fond of since they hacked the people’s accounts every like three times a year. 40-50,000 accounts get hacked and your personal identification is out in the wind.
Anyways I was hoping that some people may have recipes for me to get 100% of the strength of the painkilling strength of this medicinal product I was thinking most likely a tea but I don’t know how about how to go about it and making it. Maybe I can empty a tea bag out and put it in there and so good I don’t know, and then what it do with the Define stuff does leftover that’s still should be good because it should be some strength in it. So then I thought about YouTube looking up some recipes if they have them on there but I hope some people out there have some suggestions for me and how-to instructions on how to get it into my system, since I can’t smoke it because I have asthma. I’m hoping it’s affected I understand it’s quite effective I mean I have a very very serious pain I get when I’m in the hospital and they do an MRI on my spine … cuz I go to the emergency room immediately I start getting injections of pain medications every 4 hours and then it’s just a matter of waiting for whatever is pressing on the nerves in the MRI pictures for the swelling to go down basically.
Sorry I appreciate any recipes for the medicinal product to get it into my system 100% usage of the product that we getting. I need some recipes I’ve been up all night which is another medical condition I suffer from but it’s not a pain for one but if you don’t get proper sleep it elevates your pain, that I know for 25 years. I’m looking forward to some interesting recipes and suggestions and I thank you for your time my name is Fred. Adios.
My husband had a spinal fusion that went bad 3 years ago. If it wasn’t for his pain medication he wouldn’t be able to get out of bed to play with his kids.
I have a bulging disc and 2 herniation, I LIVE in pain.
We are treated like addicts because we ask for some relief from the unending and torturous afflictions that rules our every waking moment.
We are both adults and fully capable of medicating ourselves probably.
I don’t like being treated like an addict. I don’t like being treated like a child.
My husband was electrocuted because someone else made a mistake. He survived with many injuries. 9 major surgeries and permanent nerve damage. 17 yrs…every day in debilitating pain. The pain was managed until the opioid crisis. Since then he has been treated like an addict and we pay his pain doctor each month to torture him. Doctor still gets paid the same amount as he had been. Maybe someday my husband can enjoy his life instead of surviving one day at a time.
I’m a 57 year old male with nearly 40 years of pain issues. I have used prescribed opiates for the last 20 years. In addition to being a pain suffer, I also spent nearly 6 years working directly in a pain clinic as an x-ray and fluoroscopy technologist. It is both of these life experiences from where I speak.
Honestly, I never imagined how a single type of patient (pain sufferer) could ever be so discriminated against. I’ve seen and personally experienced so many abuses in so many forms that I would have to write a book, a thick one, to explain the details of my claims. What I have witnessed and experienced has left me cynical and disgusted with the pain treatment medical field.
As a patient, we are at the complete mercy of our Doctor(s). As pain patients, we are vulnerable to a profit-oriented pain industry. I have found these realities to be a source of stress whereas it should be an affordable source of caring and healing.
The “Opiate Crisis” and the efforts to combat have literally ruined lives in an adverse way, and it’s frustrating that no one is listening to the numerous stories of negative impacts from this new American war. What I have witnessed is best described as cruel and uncaring.
What I found most often in this relatively new medical industry (Pain Management), is it’s ripe for abuse. With the Governments demands to cure this so-called crisis, it has opened an arena of corruption. And we, as pain patients, are taking the brunt of it.
As legitimate pain patients, we need to stand up, stand together, and fight the indifference and bias against us. If we don’t make this a political effort, nothing will be accomplished.
I have struggled all my life with pain and still was a functional person in this society and held back in slit of meds just so I could function after I was prescribed my meds. Well now they were taken away and I’m a vegetable struggling to try and function. I started young when I had polio, but I still worked since I was 16 as a hairdresser, then the inoperable disc in my back and neck, still pain. Cleveland Clinic diagnosed on top of everything else, the throbbing feet now, I have fibromyalgia and post polio syndrome unable to work but still trying to function.
But now with all this my meds are taken away, the steroid shots don’t work anymore so I stopped them, now my pain Dr. is saying his hands are tied because of the CDC, I can only have this medicine no one has heard of. He has a paper telling him I have to let him try shooting in my spine to try and help with the pain, their rules. I could have nerve damage and if this doesn’t work then I have nothing. The CDC rules his hands are tied.
I am sitting here now in so much pain understanding why you have heard of a person already killing himself because he can’t live productively in a wheel chair because his meds were taken. Because they won’t go after the dealers and clean the damn streets up they come after us. My doctor says they are coming after us because they know where we are. The money they spend here so the junkies get free needles so they can shoot the meds up, the money on narcan in all the EMT trucks to bring the junkies back, so they think to take our meds away makes them look like they have a hold of addicts? All the people doing in right with their doctors are now on the streets buying it and making those dealers richer and bringing more in. What have you accomplished? Let the media explain all this to us and the public and then you explain it CDC!
I am 36 years old. I have Cerebral Palsy and use a wheelchair. I’ve been a pain medication patient since 2015. I was given a prescription narcotic by my primary care physician and had round the clock relief for two years. After that, the medication I was given start losing its usefulness and I was referred to pain management for something stronger. By then we were in the middle of the 2016 CDC guidelines and that’s when my life changed. It took me a year to get into a pain management clinic (during which time I received ZERO pain medication besides OTC drugs) who insisted I do pain management injections in order to receive medication. I stopped going to the pain clinic because every time I had to get a procedure I had to pay the surgery center a $300 copay, which I couldn’t afford. Right now, I have a Primary Care clinic that will give me the smallest dose of a narcotic. It gives me relief at night, but I don’t have anything during the day. This has absolutely destroyed my life. I am practically homebound except for doctor’s appointments. I’m lucky if I can shower myself once every 7-10 days because of my pain. (Before this, I was completely independent in my own home going to school full time working on my master’s degree in Sociology). I long for the day when I can receive pain medication that will help me around the clock again so that I can resume my normal life.
50 year old disabled nurse, I’m a grandmother, wife and mother with debilitating intractable chronic pain who just wants to live somewhat of a normal life, a quality life with tolerable pain which is the goal of pain therapy!! I suffer with multiple debilitating chronic illnesses causing this debilitating pain CRPS (RSD), small nerve multifocal neuropathy, fibromyalgia, severe osteoarthritis, DJD, bulging L4 to L5 nonoperative among other things.
Up until the 2016 guidelines came out I had after 15 years of suffering and trying all types of non-opioid treatments after over 56 or more injections of steroid that were at one point forced on me by that pain doctor at the time just to receive small amount of pain meds which internally damaged my hips causing avascular necrosis which I unfortunately needed bilateral hip surgeries and since had 6 total hip surgeries. I also attempted to use many types of other non-opioid meds otc and prescribed without any relief. It wasn’t til I finally found the right doctor she started me finally on the right opioid pain meds and after much trial and error finally was placed on the right meds and doses and had somewhat of a normal quality life with tolerable pain til the CDC guidelines came out and my hell began again.
I now no longer have that quality life losing more and more every day. This senseless witchunt against doctors pharmaceutical companies and patients needs to stop. This blame game needs to stop. Other illegal drug crisis will continue and addicts will continue to addict to these illegal drugs, overdose and die. While pain patients will continue to suffer and be tortured like myself. I feel lucky in the fact that I still get something even though what he’s giving me now is very much less effective, at least I’m still prescribed for now. If this continues that won’t be the case. That’s why I go to every Don’t Punish Pain Rally I can in PA and speak out about the ignorance, torture to millions like myself the forgotten ones in this opioid crisis. Thank you for listening.
After pleading guilty for a trumped-up federal marijuana offense (recreational marijuana was already legal in Washington State) I was forced to stop using marijuana to mitigate chronic level 3 back pain caused by an auto accident. My board certified physician recommendation of medical marijuana use was rejected by the federal court. After suffering for four years (7 months of that time I was incarcerated) with support of my physician I am in the process of indicting the DEA in civil federal court for causation of pain and suffering also cruel and unusual punishment. There are seven other indictments related to the federal prohibition of drugs including negligent homicide, child endangerment, creating attractive nuisance, causing mass incarceration, and depraved indifference to homelessness. We are in the process of recruiting a former US attorney to represent all victims of the war on drugs in open federal court. The former US attorney is a personal friend of my family and wrote a letter of support to the judge for sentencing hearing during my case. We need signature support from victims, advocates, and the organizations they represent to help motivate my attorney friend private law firm to take this case. We would like all victims of the war on drugs to read the indictments and endorse our plan to sue the DEA by Email. We can be contacted through Twitter account Nat Turner Revolution or Email louisterry1959@hotmail.com For our plan and more information. Web page coming soon.
I feel so alone and isolated. There have been times I wanted to die, but my 5-year old son keeps me going. I get up every day for him.
About two years after he was born, I had a car wreck. I hit a coyote at 60 mph and ripped the radiator off my car. The doctors told me I had the spine of an 80-year old and needed a double level fusion in my neck.
I was 34 then and in tremendous amounts of pain. But after reading online stories in spine health forums, I was skeptical about the surgery. Everything told me to wait. So I did, for a year. I saw three surgeons and a neurologist. They all told me to have the surgery.
I live in a small city in southwest Colorado. When it comes to opioid pain medication, all the doctors here seem to have taken the stance, “We just don’t do that here.” The nearest city is Albuquerque, New Mexico, which means a 4-hour drive for me across state lines, or a 6-hour drive to Denver over mountain passes.
I never take more medication than prescribed. I am not an addict. I do everything they tell me. I was walking and doing yoga every day, just as the doctors recommended. I took my vitamins and a fruit shake every day.
After the fusion surgery, things just didn’t feel right. I was in tremendous pain again and this time there was more of it in different places. I told the physician’s assistant at my surgeon’s office and he told me to just get off all the drugs. He said it would help. He told me I would be fine. I wasn’t.
I struggled for another month before I demanded to see the surgeon. He told me I would benefit from OxyContin and gave me a week’s supply. For the first time since my accident, I was able to work and properly care for my son. My depression lifted. But when I called to tell them that I was doing good on the medication, they said it was time to go back to my primary care doctor and any further medication would have to be prescribed by her.
I went to see her, but she still did not feel comfortable handling my care and referred me to a pain clinic 6 hours away. I was in despair, thinking that I had crippled myself for life and would lose my job, my son and my husband. All of these relationships were strained at this point.
The pain clinic helped me get my life back. They are compassionate and good to the people that come through their doors. It’s a common misconception that pain patients want to take medication. We don’t. We just want some of our lives back and pain medication helps us have that.
A year after my fusion, the surgeon met me again. The fusion had failed, and he wanted to do a revision that would be more painful than the first. He also told me he thought my pain might be caused by fibromyalgia. I’ve never been so angry. I have pain because of my broken neck. Pompous arrogant doctor with no aftercare.
Here is my dilemma, I’ve gotten better care in a big city, where they do not treat me like an addict. I’ve gotten my life back. At first, I was able to go there every three months to get my medication, but with the laws changing, they now say I have to go every month. Driving 6 hours both ways with a 5-year-old and a broken neck is hard. But quality of life and pain are great motivators.
My experience has left me with so much anger towards doctors in my area. It seems their Hippocratic oath has been trumped by the opioid crisis and fear of administrative action. I do not tell people about the medication that helps my quality of life for fear of judgement and stigma. Unless they have been through chronic pain, they simply don’t understand.
I wouldn’t wish this on my worst enemy.
I’m 35 year old husband and father of 3 young children. At the age of 18 I was thrown through a wall and ran over by a truck. After two knee surgeries, the truck cracked my knee cap, and trying other alternative options for my pain I went to a pain management clinic. In the doctor’s words I had the lower back of an 80+ year old man at 25. We started with minimal medication, physical therapy, lumbar injections, and burning nerves in my back to try and control the pain. The doctor had been able to make it bearable with medication, but once the “crisis” and new laws came about my medication has been cut in half. Needless to say it’s not only affected my life, but also those I care about. I’ve gone from being the fun loving dad, husband, and chef to having to tell everyone sorry I can’t play today kiddo, I’m sorry I can’t help you at home, I did too much at work. Sorry boss I know I’m screwing up I’m just hurting really bad. I’ve held out hope that the powers that be would see that their over-reaction to idiots is hurting chronic pain suffers, but I’ve finally had enough. Being treated like a junkie and the constantly changing laws (doing anything they can to make it difficult to obtain properly prescribed medication) has gone well beyond my threshold for idiocracy. It blows my mind you can show up to work stoned out of your gourd after smoking a joint, but god forbid I take pain killers. Something needs to give…
I would like to comment, since being a chronic pain sufferer for years, I’ve seen the drastic shift in treating pain of late. I suffer from pinched nerves, stenosis and carpal tunnel. Clinics are reducing needed meds to half or less.
I’m an older adult simply trying to function properly.
The scrutiny we endure is way below a fair means of treating patients.
I fell from a ladder to a concrete slab 15 feet below. I was broken. I have undergone 10 surgeries 6 of which were spinal. I can barely walk and have tried every medication available and only opioids work. Without them I can not get out of bed in the morning and even with them have issues. I have been on the same dose for two years and am suffering because my pain doctor is afraid to up them. I never wanted this but am stuck with it. I will be on them the rest of my life. I am responsible and only trying to stay out of pain.
Just ran across this website on FB and wonder if I should share my story. Severely injured in the military (Vietnam era) but able to retire with 60% disability. Since then, MRI demonstrates only 3 discs are viable and the spinal vertebrae continue to degenerate at an alarming rate. Just last week, MD was suppose to order walker, wheelchair, and home physical therapy. Of course, no one has called yet or delivered the equipment. I sit here thinking about how I am required to undergo drug tests in order to receive pain medication – must see a specialist, since family practice physician cannot order Schedule I drugs. Cannot use the military pharmacy, as there are insufficient parking spaces and no shuttle service for the disabled. An average of 2-4 hour wait time is not possible. Suicide Hotline is available, but of little use. Thinking of moving to Oregon, establish residency, and just get life over with.
My 86 year old father has suffered from chronic pain since breaking his back nearly 60 years ago. He has been meticulous with his medications but has needed more medication over the last 20 years with arthritis in his arms and legs. He cannot get a higher dose from pain management than he gets now so Mom must listen to him cry in pain as he goes to sleep each night and wakes up several times during the night. He should not have to suffer at this age.
Hi,
I live in constant pain. I have had multiple shunt surgeries for Pseudo Tumor Cerebri that went on for 15 years and 37 shunt revisions. Now I have Chiari Malformation, Pulmonary Hypertension, and my diaphragm is 75% paralyzed. My spine has about 5 or 6 diseases including severe DDD, disk bulging and protrusions, severe stenosis, spondylosis, scoliosis etc etc. I can’t get out of bed nor wash myself and I have no life left. The pain doctors are too afraid to write anything and the opioids are all that works. I am not allowed injections of any kind because of the Chiari. Nor can I take Tylenol or Aspirin or Motrin or steroids due to liver and kidney failure. I live alone in Port Huron Michigan with no family, and do not know where to turn for help. I’m also in heart failure and just wondering how much my heart can take? This is not living, and the pain meds helped me at least cook for myself and shower myself. At this point I do just want to give up because the only thing I have to look forward to is more PAIN. Wished something would budge a little. DOES ANYONE HAVE ANY SUGGESTIONS…
I am age 57 and had a very high pain tolerance, as do most of my family members, until I underwent an emergency C-Section on my 20th birthday, which resulted in my losing my firstborn daughter within 2 hours to Amniotic Ban Syndrome. Due to fetal emergency, I was not given enough anesthesia and felt the entire surgery, with NO ability to let them know I was awake and the agony I suffered!!! I could hear everything in the operating room regarding the distress my baby was in, desperately focusing on her needs while enduring the excruciating physical torture of being degutted!!!
Afterwards, my pain tolerance was completely opposite. I have undergone several surgeries over the years, some bad complications, with the last surgery resulting in my becoming disabled in 2006. My quality of life has been extremely poor over the past 1.5 years, as I am forced to live in a severe 7-8 pain scale ALL the time, due to a drastic reduction in my opioid pain medication within the new guidelines. My disability has not improved in these 14 yrs and I feel abandoned as this new protocol is NOT managing my severe PAIN and SUFFERING!!! I have never experienced any addiction issues and just need my quality of life back!!!
I’ve had 26 surgeries for several birth defects. I’ve needed pain medication since I was 2 months old and I’m now 53. I cannot function without my pain being subsided and I have been through every possible way of relieving it known to man and/or woman. But now, NOT because I have abused meds in any way, but because others have, I am constantly in severe pain without relief because I cannot get the medications I need. Please help all of us that are being punished by doctors because of those abusing meds, not those of us that truly need them.
My story isn’t nearly as bad as the others I’ve read on here but I’d still like to share. I picked up a dog wrong at work and damaged my back and SI joints. Herniated discs and slipped discs about midway to the bottom. So I suffered in severe pain for nearly a year and a half. I finally got into a pain management office for the doctor to prescribe me a medicine meant for Parkinson’s disease. He told me there was no way he would prescribe opioids, even though they would definitely help. He said if I was 80 years old he would, but I was too young to be on pain pills (I’m 35). He recommended I go to classes to learn to live with the pain, as it would be a life long issue. That was unacceptable for me and I found another physician who actually helped me. I am on a low dose of medicine, and stable with my pain. I am thankful for the doctor helping me, but not everyone is so lucky. I hear from a lot of people who say their doctors deny them any sort of pain control and prescribe outlandish amounts of Tylenol and Ibuprofen. I can’t take Ibuprofen anymore without getting ulcers and nausea. I’ve told the docs this and they tell me to take it anyway (if I really need it)… I always need pain relief, so? So now I’m waiting to have a spinal cord stimulator implanted. Which insurance will likely deny several times before they allow it. If they won’t allow people proper pain control, then they must offer an alternative to the medicine, which they do not do. Physical therapy does not help when you have discs grinding against one another, but insurance requires it before other treatment can be performed.
I am living with both fibromyalgia and neuropathy. I was bedridden 10 years ago at the onset. The nerve pain in my legs was unbearable. Like someone setting my legs on fire while at the same time dipping them in freezing water. My feet burn all day. My feet feel like they are being crushed all day. The feeling of clothing touching my skin is painful. The skin on my legs burns all day. I cry a lot. After trying several drugs that either failed due to lack of efficacy or failed due to side effects, I finally found a neurologist who wrote for a low dose opioid patch. My life changed. I now am able to take care of my dogs and my family. I am not pain free. I still live with a level of pain that is a 4 or 5. I don’t know what a pain free day is. I haven’t had one in over 10 years. My opioid patch at least gives me the ability to function. I still have to lay down on a heating pad several times a day, but at least I can exercise and take care of my family. We are not addicts. I have not increased the strength of my patch in years. We just want to live a somewhat comfortable life. Before, I was contemplating suicide due to the pain. If my pain meds are removed, I will again. I have tried alternative medicine and treatments to no avail. Spent thousands of dollars on acupuncture, CBD, etc. Please allow me to take what works. I should not have to beg for it. I would love to testify before congress to tell my story. I am not afraid of these lawmakers.
I am a 60 yo registered nurse, who has been living with pain since 35 yo. I have arthritis in my back and have broken my back in several places from falls. i have been on methadone and oxycodone for 25 years.
I see a pain specialist too. I do not abuse my meds, and have decreased – not increased – my meds over the years.
My meds work to control my pain. I also get injections that help. I have chronic skin infections, MRSA, which has resulted me in now being a bka. And fear I may lose my other leg due to chronic infections. Yet I am treated like an addict when I go to ER, for these frequent skin infections. But what I am on for meds currently, works. I don’t do street drugs and never have. As a nurse I follow the rules, yet get treated poorly for it. The threat of losing the meds that I am on because some idiot abuses medications is just sad and scares me.
My name is Cindy Cirlincione and I was originally diagnosed with fibromyalgia in 1999. Anyway it’s a long story. I’ve done so many treatments. Now years later I’m in chronic pain 24 hours a day seven days a week. The pain doctors are not handing out any medications that help with pain. Cats and dogs are treated better than human beings. Such an inhumane problem in our society. I hope to God they can help us before too many people end their lives.
I began having unexplained, unremitting musculoskeletal pain as a teenager. My complaints to my primary care physician were brushed off as depression, anxiety and growing pains, and I was only prescribed antidepressants until I inexplicably broke a growth plate in my hip running cross country track at age 15. This was my first opportunity to see an orthopedic doctor who visited our rural community once a month. I was treated with physical therapy and given a key to use the elevator at school, but the injury never healed and I quit participating in sports. At college my health problems continued, daily pain, stiffness, low grade fever, fatigue, and I began developing nodules in the joints of my hands. After the first surgery on my hands I was referred to rheumatology and diagnosed with seronegative RA. I soon began being treated with pain management to help me deal with the unending pain caused by joint degeneration and remodeling.
I continued treatment with rheumatology and had 5 orthopedic surgeries over the next 15 years. As my health problems grew more serious and complicated, the national war on opiates had begun and my providers began pressuring me to stop using pain medication. I tried alternatives for nerve pain, seizure medication, anti-inflammatories, and was then referred to a pain management clinic for injections. Facet blocks were not helpful, but the pain management physician promised a radio frequency ablation procedure would be the solution and afterwards I would no longer need pain medication. I was under so much pressure, having difficulty filling prescriptions for pain medication in town without local pharmacists giving me their opinion in front of other customers, or outright refusing to fill the scripts, and the prescribing rheumatologist telling me their clinic was under so much pressure to decrease the amounts they were prescribing. I felt backed into a corner and like I didn’t have any other options, so I had the surgery.
I had already experienced problems with post surgical wound healing and infection, and nearly immediately knew something was wrong after the procedure. I ended up with a 14 mm abscess adjacent to my spine, a systemic infection, and no doctor willing to treat it. The pain management doctor who performed the surgery said I had a “red throat” and sent me home after making the six hour drive with the abscess on my back. I needed help from my mom to even walk from the car inside the building and was so ill I could not write my name. Because nobody was willing to surgically intervene, it took several months of intensive antibiotics to heal the abscess, to the detriment of my overall health.
It has now been over three years since I was threatened with being forced off pain management. I have sought further diagnostic testing and learned I was never a good surgical candidate due to Ehlers Danlos arthochalasia. I told the pain management clinic of my previous problems with surgery and risk factors for infection and my concerns were dismissed. The system of getting patients set up, approved for, and through the RFA surgery at that clinic is mechanized to the point of running like a factory. I have since learned that, in addition to paid infomercial type advertising every weekend, the pain management doctor has representatives from his office visit primary care providers throughout New Mexico with donuts for staff and fliers for prospective patients. The entire practice preys on the last hope people have that they can be free of pain. Combined with the pressure from prescribers for patients to find any alternative to opiates, it has created a predatory new market for people making unrealistic promises. The pain management doctor is trained and certified as an anesthesiologist.
I still have an area of numbness on my back, more daily pain than I did before the surgery, and do physical therapy every week. I understand my medical condition better and I do not believe anyone has a solution. I wish I could have learned that without losing so much of my time and health.
I am a veteran of the Army, law enforcement, father, husband, son, HUMAN BEING. I have been suffering from chronic back pain for years. I have spinal stenosis, degenerative disc disease, and arachnoiditis. One of the FIRST things the pain management doctors says – WE DON’T PRESCRIBE ANY OPIATES FOR FIRST VISIT. They didn’t even examine me and said I have to get a psych evaluation. At my psych evaluation the doctor was horrible. When he read my file that says I’m allergic to morphine he stated out loud “imagine that” like I’m lying. It makes me break out in hives, tongue swells etc. He then says that people on opiates can’t take pain better than when they were not taking it, and when I told him I do take pain the same as before he lashes out saying, “Why do you think that is? Why you are the exception.” He continued to pretty much ridicule, belittle, and pretty much made it up in his mind that I was seeking drugs to get high. The pharmacists, doctors, people in general automatically assume that if you are taking opiates you are an addict. I have never been so embarrassed in my life, and this has happened on numerous occasions. I am so tired of it, I wish I could give them MY PAIN for the rest of their lives and let me be the doctor to treat them like that. It’s not fair at all, and people commit suicide because they can’t take the pain anymore. This has to stop.
Having had chronic pain all my adult life, I have taken many different opioids. When my adult son became an addict I took in his children. He destroyed me and my reputation. Turned me in to Child Protective Services and lost my twin 12 year old boys. Because I take opioids as prescribed. No questions asked. My kids were gone for 7 and 9 months before they listened to my doctors and their addiction counselors. My kids are home now. But I’ve lost 7 and 9 months with them and eliminated the adult addict son from my life.
I am suffering from Fibromyalgia for about a year now. I am only 49 years old. At times I have debilitating pain that keeps me from moving off of my couch and doing the simplest things. It is unfortunate that I cannot get the pain medication that would benefit my disease and help me in my everyday life.
October 7 2019 I had left knee replacement surgery and on the 8th Medicare refused me 21 day rehab for therapy and sent me home. That night I was trying to get to potty chair to use it and I pivoted on my right foot and broke my tibia and tibia and they busted through my ankle skin. I was rushed to hospital where I underwent right ankle surgery 2 days later. Upon release from hospital on the 12th I was transported by ambulance to nursing home where I received 3 months therapy on my 2 legs. I couldn’t walk on my right leg for 2 months and 1 week. I blame Medicare for most of my pain and suffering because I didn’t have the proper care upon release from the hospital on the 8th of October. If I had been in rehab I would have had help peeing at 3am on the 9th and I wouldn’t be suffering with this pain. I have a picture of my ankle and there are still broken bones in my ankle that the doctor was unable to fix. Less than 4 months after breaking my ankle the doctor said arthritis has already set up in my foot. I was unable to find a lawyer to sue Medicare … they have amnesty and you can’t sue them. I have to go 47 miles to go to pain clinic for my pain meds. They do random pill counts and urine screening in order to receive any pain meds. My doctor is unable to write the script for me. I’m still 4 months in on a walker and the quality of my life has definitely been altered.
I was getting cortisone shots in my lower back and now I can’t get any more and it hurt me more then helped me. Well August 1 2017 I fell about 40 feet out of a tree and landed on a 6ft picket fence. One of the pickets went up through the bottom of my foot into my ankle and shattered my ankle. The other one went in through the back of my leg and Touched Me Up Inside. Something opened up my left arm. I can see my bone for approximately 6 in. Something caved in my chest over my heart. It messed up my back even worse. Then what it was? I also wound up with a concussion and I still can’t remember things. Also, they had to sew my face. In and out I spend time in hospital rehab. I’m not receiving any kind of pain meds. I started out with an amount of Social Security. I ate something and now I’m down to less Social Security. I’m just getting screwed all the way around.
I hurt my back 18 yrs ago. I injured L3, L4, L5, and after several surgeries S1 and S2. I had 9 back surgeries all together. I had an artificial disc put in at my very first surgery. I started hurting in my feet and legs right away. It never went away, never got any better, it just got worse. I now feel like I have socks of pain to 2 inches above my knees! I feel like my legs are upon a fireplace and on fire with cactus needles all in my legs and feet or a million fire ant bites. Last September my pain management doctor told me that there was nothing else they could do for me. The injections were not working nor is the meds. So I wondered why was I there. I winged myself if off my pain meds and now am in full blown attack at least 2 times a day and I wake up crying at least 2 to 3 times a night! I do not understand why it’s ok for others to live off our misery! We need help our lives are hard and what does it hurt to let us have less pain. It’s not like we will be running around getting into trouble
I have been seeing my PCP for about 10 years. I have several conditions including diabetes, fibromyalgia, arthritis, diabetic neuropathy. I have had two spinal surgeries, a fusion in my neck with a bone graft and a metal plate in my neck. I have severe degenerative disc disease, severe osteoarthritis in my lumbar area and a previous laminectomy. I have been on opiod pain medication for several years which allowed me to have some quality of life. I have 4 children, 6 grandkids that my pain severely limits my interaction with. My life is so much harder since being forced off my medication. This is not right. I have never abused my medication, followed my doctor’s direction and this is what is happening to so many people.
I was born with spondylosis and not diagnosed until I was 33. When I was 35 I broke my back, by the time my boyfriend convinced me to see a doctor I had been walking around for 2 months with a broken back. Present day I’ve had 6 back surgeries, my thoracic and lumbar are completely fused and I have 30something screws and rods in my back, I have had 3 knee surgeries one knee replacement and now my knee is so messed up I can barely walk even with a cane. I had been on medication for 17 years up until June of 2019. I was convinced by my pain management doctor to go to detox and try a “new” med. They told me it was a new pain medication and would give me my life back. I have always done what they have asked me to do. What they gave me is not for chronic pain, it states that all over the internet! Then 3 different doctors basically laughed and said “that’s not for pain”. I have always led an active life, did every sport I could do, rode horses in the rodeo and at several race tracks, worked out, was a very active mom. Now my life is lying in bed, and maybe cooking dinner once a week for my youngest son who still lives with me. I can’t walk, I can’t sleep, I have begged my doctor to put me on anything!! Just take the pain away even a little. She says “well the law states…..blah blah blah”
To be honest I think of taking my life, I will be 55 in a few months so I have been dealing with pain for 20+ years, but now being denied any type of medication will be my end. I don’t want to break the law as I wasn’t raised that way but I have been very close to going to the streets. I can get anything out there! So clearly someone isn’t afraid to help their patients. I keep thinking that if I just hang in there my doctor will help me. I don’t think someone else should control the quality of my life.
I feel helpless, and I miss my life. I am on SSDI but I still push myself to work 2 days a week, it kills me. I just have to feel I am contributing to society some how.
I will definitely be at the rally in March, I have to do something.
People are getting meds, selling them on the street still! The people that this whole cutoff is killing are the chronic pain patients. I don’t feel like anyone cares, my view of doctors has changed. I think pain clinics are a waste of time, I am done with injections and surgery. I have a doctor trying to shove a pain pump down my throat, I don’t need more devices in my body.
I just want so have some relief, and be able to garden again, go fishing with my son, and walk.
Warmest regards
Bonnie
I have been on a high dose opiate, after trying MANY other options, and I had finally been living a happy more productive life. A little more than two years ago I was asked to taper my dose, but was soon told I had to go down more than 80% of my original dose. When I said I could no longer go down any further, I was told I had no say. My doctor cuts my medication with every refill and has no reaction when I bring family members to appointments to advocate for how much this has torn my life apart. I often can’t get out of bed, can’t enjoy my first grandchild, go on vacations and do basic household chores. I’ve always done the required drug screens, never refilled early or had any issues after 25 years of use. I have offered to sign a waiver that I understand the risks involved, but my doctor won’t budge. I do see where patients don’t want to go on anymore, because not only has my medication been cut, but also any relationship with my doctor. Why are patients that have used these meds responsibly for years being punished for those that have abused them? All doctors seem to care about now is how to cover themselves, but had no issue until these new guidelines were issued. I’ve told my doctor that I’ve read that these issues are supposed to be guidelines, and not for chronic pain patients, but it doesn’t matter to him. I just can’t wait for the pendulum to swing back the other direction, if ever. I’m miserable today and every day now.
This is for my husband. He has had 10 spinal surgeries. 8 of them have been fusions. He has RA, fibro, neuropathy as well. He is also a diabetic. It all started in 2016 after his last fusion. His surgeon sent him to a pain doctor for after surgery care. Now my husband has been disabled since 2006, deemed never to work again. Now this pain doctor started him off great. He felt better and was getting around pretty good. After about 2-3 months the doc said he was gonna start dropping his meds and get him back to work. WAIT WHAT!? This doc obviously did not read his records. We looked at him with a lot of confusion. We both said to the doc that he was disabled and would not be returning to work. And the doc just shrugged it off and continued to ween him down to almost nothing. When we did finally find another doc to take over it has been a nightmare since. Each doc wants him to get shots that are both painful and some make his blood sugar so high we end up at the hospital. And don’t get me started on how the hospital treats pain patients. Point being is that we have not been able to find him anyone to help. No one listens or cares. He is not able to get out of bed these days. He’s a great husband and father but the last 2 years he hasn’t been to more than 2 of our kids sporting events. I feel like a single parent right now. I’m stressed and I have to watch him everyday slowly get worse.
I am so tired of hearing opiods do not work for long term pain. That there are no studies that prove they work or that the harms outweigh the benefits. There are over 20 million intractable pain disease patients that have taken what PROP calls high doses of opiods for 10 years or longer. Tried step therapies for years and tried suicide because of pain. Finally got MRI and x-rays that showed progression of disease. By now I developed depression and anxiety. Finally put on opiod therapy, and it gave me a part of my life back. Then Anna Nicole passed and it was like I did something wrong. The government started the over-reach into my toolbag of medicines, they started with my anxiety meds. Stated I could only be treated for one of the two. I had been taking 15 medications the years prior to being prescribed z@*@* and @@. I traded all the psycho drugs for two with great strides to my health and well being. That is one hell of a study. Not only we lived, we raised family, worked, kept homes and sent our kids to college and could function. Not this bullshit. I had a tooth pulled, got addicted, started shooting heroin, lost my house, job and got put in jail! My sons have been raised in my home by loving parents that took opiods to live and function plus participate in their lives, not escape. All three are police and military. Now come the CDC doubles down and boom, my life is back where I started 20 years ago. All the strides, money spent, experiments/meds for nothing!! I can not and will not deal with the horrendous pain, I do have a exit plan.
I have been on and off pain meds for about 6-7 years. Started with carpal tunnel surgery one hand then the next. Then a spinal surgery that did NOT work I’m in just as much pain now as I was before. I have arthritis in both knees. From my neck to shoulders arms elbows and hands daily chronic pain. It hurts to do lol things like brushing my dam hair. On the times I’ve been off pain meds I have NEVER said well I guess I’ll just shove a needle into me full of heroin. It pisses me off when I hear opioid epidemic! It’s not. It’s a heroin and fentynal epidemic! No one that I’ve ever heard has died from taking their meds responsibly and that’s the word responsibly. Now finding a doctor willing to give anything stronger than Tylenol is impossible. And it pisses me off so much. I get so much flack from the FB people who say pain is all in my head or I’m judging people or I’m ignorant. I’m stating only my opinion my experience. And in my opinion the junkies have messed it up for people who are in chronic daily pain.
Was pinned by a Jeep in between a 5 ton a/c unit. Crushed my pelvis and damaged my spine. Was stable on my few meds, and when my doctor retired in 2015, the suffering began. Referring me to a pain clinic, and went for 1 year with sometimes up to, and over 50 people in one room, for hours. Only to see a nurse practitioner, that checked my blood pressure, and sent back into waiting room. Then after another 2 hours, still only seen by NP to refill prescriptions.
Couldn’t do it any longer, after the murder of my sister, after working at a pain clinic. Found dead at work, in lawyer’s office… I found a primary care physician in 2019, but he took me off my regular medication and replaced with subutex. It is what it is…
The pain clinic was a month to month basis. The primary care, is every 4 months… I can’t afford this new medication, another year. To make matters worse, they threaten, forced tapering, of either pain meds, or my Klonopin, stable since age 15! Norco stable, since 2006…
I have an upcoming appointment in April, and until then, have found a few other doctors that won’t force Subutex on me. Too expensive. Doesn’t work for my pain, as well. The doctor insisted, and claims it’s 20x stronger than my other… It’s 20× more expensive, and that’s all.
I was in a car wreck a year and half ago. After therapy didn’t help I was sent to a pain management doctor. He was able to help with mild medication and then an injection which ended my pain for a year. After that it came back and nothing is helping and my new pain doctor is not budging on giving me anything strong enough to ease my pain. I am just stuck at home in bed in pain until my next procedure to see if it will help. I am in unbearable pain daily as a mom of 3 and wife this is unacceptable and cruel not only to me but to my family. If I was able to ease my pain with stronger medication I would be able to walk, cook, clean, care for kids and myself, and play with my toddler. It’s depressing and frustrating to be in this situation. I need help!
I have been on opioids for 8 years now due to a bladder condition. It is autoimmune. It has broken down the lining of my bladder. Urine, which is acidic, burns me all day, every day. Sometimes my bladder gets so painful it begins to spasm. Oh Lord help me when that happens. Those feel like intense labor pains. My pain medicine allows me to function day to day. I started working in a nursing home at 15 yrs old. I was 85 pounds soaking wet but lifting large elderly men and women. I was there to help the seniors and get a head start for nursing school. What happened inadvertently was the decimation of my back. A “nurses back” they call it. It’s hell, that’s what I call it.
And NOW they want to take away anti-anxiety meds because of my pain meds. I was raped 5 years ago in Chicago in a violent fashion. Night terrors, PTSD, insomnia, and panic attacks when I’m alone with men. I am furious our healthcare system has come to this. It is shameful in the greatest country in the land.
Thanks all you fentanyl addicts, you’ve successfully ruined your own lives and now soooo many others.
My husband suffers from complex regional pain syndrome for 20 years. He has met every requirement to have medications that allow him to have quality of life. His doctor retired and the new one who took over the practice is abandoning him.
Cutting medications so that pain won’t allow him to function. Response today was go to hospital.
This is barbaric. Our family cannot believe what is taking place.
I pray your organization can make a change soon for all that are suffering.
Doctors need to read the CDC guidelines that were amended May 2019.
I have restless leg syndrome and periodic limb movement disorder, both of which can be controlled by low dose opiates.
I tried all the treatments short of opiates and didn’t get far. An iron infusion might help, but they aren’t entirely safe (I feel comfortable with the tiny risk but my PCP doesn’t).
Finally my pain doc started prescribing [a little] oxycodone and [a little] Ambien. That worked pretty well. Over the 18 months I was allowed those meds, my pain level gradually subsided (probably due to better sleep from less RLS and PLMD). I never needed a dose increase.
HOWEVER the state law changed, and now she cannot prescribe those drugs to me again. And my sleep quantity and quality is very poor again due to RLS and PLMD. And my pain levels are rising again.
(I never abused those drugs. They don’t seem to make me high at all.)
Guess I’ll try kratom. Not sure what else I can do — at end of treatment road for RLS+PLMD unless PCP lets me have infusions.
(Couldn’t tolerate dopamine agonists in effective doses. Oral iron upsets stomach badly although I take the very small amount I can tolerate — not enough.)
I have a very rare wildly painful degenerative genetic disease. I just kind of landed in the middle of this war. My doctor and I stayed away from opioids for as long as we could, I did physical therapy, nerve pain medications, diet modifications, and every single thing you can think of and nothing slowed down the progression of my disease. My daily pain right now, with medication, diet modifications, vitamins, meditation, stretching, sleep maintenance and success, resting at least 90% of the day, on a day I do everything perfectly; I would describe as 17 migraines. It is a pain level that is out of this world. Only very recently, in response to out of control pain that is now affecting my blood pressure, digestive system, immune system, lymphatic system, and my endocrine system, only after we had explored every single legitimate treatment option with very limited results, only then did my doctor and I turn to limited opioid use. This disease is literally depositing tumors anywhere it can find a nerve ending. Right now I have thousands of them, describing the level of pain I am at day to day (with about 30 prescription medications that are not opioids) is impossible.
I’ve only just started trying opioids, and the ridiculous thing is that they don’t help that much. I can’t take them very often because my body stops getting any benefit with repeated use. I am only using them to get a minor, short term reduction in my wild unending pain ride. My doctor just told me today that insurances (I’m on Medicaid now, bedbound) won’t approve them because of the opioid epidemic. He said I have my last 10 pills I’ll probably get. He said he’ll fight for me but he doesn’t think he’ll win.
The little “breaks” I get from the opioids really are the only functional moments I have. It wouldn’t be honest to say that suicide doesn’t seem like basically the only option. Every single thing about this illness is so hard. Everything. I don’t understand why some assholes are trying to make money off of torturing me while I’m already about as vulnerable as a person can get. It is highly immoral, definitely unethical, and should be illegal.
The first thing that has to happen is the end of the psychopath we call a president to be history. The second is to get the insurance companies and pharmaceutical companies out of our doctors offices. And finally return to the humane way that the medical field is supposed to treat any and all patients with compassion and dignity. All doctors are forced to ignore and abandon the oath that they are supposed to abide by. This propaganda style opioid crisis is all financially motivated and is all just smelly deceit orchestrated to deny legitimate patients the humane care that they should have a “Doctors” decision towards the proper treatment for each particular situation not one size fits all bullshit. I have personally witnessed the elderly in long term facilities in agonizing crying pain so desperate for pain relief it’s just awful to even think that healthcare professionals would allow this because of the overwhelming paperwork brought on by the devils who orchestrated the regulations to make the desperate ones only wish for their life to end. All involved with this manipulation of humane medical treatment will face judgement and I will pray for them not to be told to eat Tylenol and deal with it and become part of the millions now needlessly having to suffer and trying their very best to keep the thought of harming themselves because they have been abandoned. God bless you all and let’s all have faith that the wicked involved with this abomination are awoken very soon by their own inability to deal with pain that consumes every second of their life.