Tell your story of living with chronic pain, by leaving a reply at the bottom of the page. Do not mention specific medications or dosages. Stories are not published right away.
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Hi, I fell 30’ working as an EMT. That was 19 years ago and I have been dealing with back pain since. I have 2 ruptured discs, 2 herniated, and several bulging discs. Over the years the doctor has had to change my meds. These last 2 years the dosage has gone down or my insurance won’t cover my meds so they have been changed to what they call pre approved meds and every January something changes. The long lasting meds taken 2x daily went from 100 mgs to 30 and the instant relief meds went from 5 daily to 2-3 . No surgeon will touch me because of the amount of arthritis throughout every inch of my spine. I have severe stenosis and was born with scoliosis. I’ve used my meds as prescribed. I signed a contract with the hospitals pain mgmt center and have adhered to said contract for 19 years.
This lowering constantly has turned me into a couch potato. At the very least I could go for short walks on my acreage but now I have to be dropped off everywhere at the door while my wife parks the car.
I am disabled but could enjoy playing guitar and walking my dog around my land. After this last amount of pain meds was reduced I no longer do either.
I didn’t start this opioid crisis and didn’t switch to illegal drugs when they gave me considerably less, nope I just suffer and barely get by. I’ve wondered why chronic pain sufferers weren’t talking about this. In the office all I hear is others complaining , patients yelling at nurses and the doctors who’s hands are tied and even threats of taking them to court.
In the 80’s I had 2 knee operations was prescribed pain meds for 4 months and when I felt I didn’t need them I told the doctor and stopped taking them.
Also why do dentist hand out a months worth of pain meds for 1 pulled tooth. When a few days is all that’s needed. I watch a lot of different documentaries about addiction and 90% took their first pain meds after a dental procedure and were hooked, and went to heroin from that point on. this isn’t something I get. I don’t know what euphoria people are experiencing because I never have. It was explained to me that if you’re getting high on ones pain meds than your taking more than you need. I’ve had morphine in the hospital for kidney stones and it make’s me sleepy not euphoric. This reduction in my pain meds has completely changed my life and not in a good way. I have thoughts about ending my life so I don’t have to feel like I do now.
I was involved in a traumatic accident in Northern Maine. I laid in the snow with 5 broken ribs and a collapsed lung waiting for the ambulance to locate me on the trail. It took us 45 minutes to get to the nearest hospital. Then another 45 minutes to another hospital for admission into the “trauma” unit. My attending physician ordered an alternative to manage my pain without medication and I went forward with an epidural to control my pain. This worked like a charm for a couple of hour until I woke up and notified my nurse my sheets were damp, and I was in pain they didn’t believe me until I was screaming in agony. The nurses finally contacted the physician and he confirmed it had fallen out. The nurses asked me if I wanted to go for another and I quickly declined. I had suffered endless hours of torture and simply could not handle it emotionally. I was then greated by my attending physician who began to yell and scream at me and forced me to the operating room for a “re-do”. Only for the exact results of only a couple more hours of relief to have to wake up in agonizing pain for the same doctor to come in and confirm it had fallen out once again. Although, the pain I suffered is reflected in the statistics of the opioid epidemic. I did not appreciate the torture and additional anxiety of a traumatic situation
Gentleman, I have been on Vicodin for quite awhile. Although it is not a complete pain reliever, it makes it possible to get up and do some things. I would like to know why legitimate pain pill use is being punished for other people’s Abuse and Crimes? Even with pain pills I still have to lie down much of the day. I have NEVER ABUSED pills or liquor, so why are you punishing me? I go every 3weeks to my doctor in order to receive my pain pills. You are using Our Pain to make it look like your Winning the Opiate Fight. That’s Shameful.Everyone knows Criminals will get it Somewhere.
Hello, I’m a 65 y/o man, diagnosed in 1996 with Charcot-Marie Tooth Disease; it has nothing to do with teeth; it’s a hereditary disease that affects the peripheral nerves of the lower limbs, knees to toes and elbows to fingers. In extreme cases, the respiratory muscles can be affected. It is extremely painful and I have been treated effectively with high dose opioid therapy, A dosage level that has not changed in nine years! And , which has been wonderful, bringing my pain into tolerable levels and giving me the functionality to do the daily needs that one must do, especially being unable to walk and wheelchair-bound and living alone. I also have virtually no use of my hands, being on able to grip or make a fist. My hands were more like flippers LOL. Anyway, my pain Doctor who has been so wonderful got a visit from the DEA and is no longer working at the clinic I was going to; and I was put with the other doctor in the clinic who does not want to prescribe the dosages I was getting. I have yet to find a physician who will so I am trusting in my Lord and Savior Jesus Christ to give me the strength I need to get through this.
I was diagnosed with RA 20 years ago along with other ailments that cause me chronic pain. I cannot be on my feet any longer than an hour without experiencing sharp pains in my lower back
as my arthritis has gone to my spine. Even after resting, the pain is always there . I awaken with it every morning. I cant wait to eat something so I can take a pain med that eases it somewhat but
only lasts till noon when it becomes unbearable again. My rheumatologist will not prescribe anything stronger as he worries about his license. I never asked for this and would give anything to free of the constant pain that is always with me. All I have asked for is an instant pain relief pill
that I could take between the 2 pills I take daily instead of having to get to an 8 level of pain before I can get a little relief again. I never abused or used drugs until the RA set in and had no choice but to seek relief. I know that its a problem with drug abusers but Im not in that category. I even feel shunned when I get my pain meds at the pharmacy. Im up early every day but now I have to wait till 9 at the pharmacy to get my meds. This is not fair but it seems I have to suffer because of others every day
Finally a group that tells the truth about pain.
Folks think we are drug addicts, I went to school and got a bachlors in finance and a masters in education after a severe accident logging…
All I hear is about the opiates I take, but they allow me to live.
I am one of the “lucky” ones.
More to follow…
My name is Phil from Ohio I have degenerative joint disease diagnosed in 1999 I have been on opioid since 1993 I have had 18 surgeries both knees are replaced both shoulders are replaced left wrist fusion and sometime in March I will have my right hand done, within the last 8 or 10 months my doctor has cut me down from 120 Norco tens a month 2 21 a week, they only work for an hour and a half then I’m back to normal which is not normal. Then if I go to get something stronger my insurance won’t pay for it I have to pay out-of-pocket how fair is that?I told my doctor years ago before I knew what was going on that it hurt everywhere that bends! All I want is to feel normal comfortable without having to go through the hassle of the DEA or anybody else up my doctor’s rear end!! Please help me if you can if anyone has any ideas, thank you all for reading this.
People are overdosing on heroin and fentanyl but they still classify them as opioids. I have an 18 surgeries with 5 replacements and all I get is flak from anybody and everybody that has to do with pain
I have several health issues and I recently made a Emergenct Room visit to MCV.I suffer from PsA and CP and the pain is excruciating in my joints from head to toes.I have been visiting doctors for many many years.I have asked repeatedly for some type of pain management and I get the same thing over and over,”Well What Do You Want Us To Do About It”? I want doctors,physicians to LISTEN to their patients.I do not need proof to show I am sick and in pain,the proof and diagnosis have been made.I need HELP to deal with the daily severe pain I suffer.I can barely walk,I can not sleep,and I feel this is causing me to loose my mental state of mind.People who do not suffer in pain HAVE NO IDEA how much this takes a toll on a person.I can not work,I lost my house,I can not afford to drive,pay for meds,or obviously get the CORRECT medical help I desperately need.I have been denied my SSDI even though I was diagnosed in 2005 with PsA.I have been fighting for my equal rights while being sick and let me tell you IT SUCKS! .I tell the doctors OVER AND OVER how much my pain is and all I get is the cold shoulder.I need HELP ASAP .These health conditions are Horrible and I feel nothing but discrimination from the Government to the Doctors to the General Public and IT IS NOT RIGHT!!!!!. We need to help the sick and weak and stop the denial of the necessary medicine so desperately needed.Thank You.
I have RA and OA. I had a knee replacement 11 years ago that is now failing. My other knee is bone-on-bone, and you can hear it scraping when I bend the knee. I need to have both shoulders replaced because of the OA and a torn rotator cuff that could not be repaired with a scope procedure. I have neuropathy which results in constant pain in my feet. The only way I am able to function in any manner approaching normal is by taking my pain medication. I have been taking it for more than two years. I have never abused it. If I don’t have it, my life for all intent and purposes would cease to exist. I resent the “powers-that-be” or the fanatics that get on the “stop opioids” soapbox. They obviously have no pain, so they cannot begin to imagine what doing without pain medication when it is desperately needed. What right do they have to dictated how much pain medication I should be taking. Although normally I would not wish something bad on another person, in this case I SINCERELY HOPE that each and every one of these people who are trying to regulate or do away with opioids will have something happen so they have to experience the pain I go through daily. If that did happen, I guarantee you they would sing a much different tune.
I have been wondering for months why my quality of life should be compromised because the government has determined that pain medications are bad and doctors in general don’t have the sense to regulate which patients truly need help to tolerate their pain and which ones could or would abuse their prescriptions. I have arthritis in just about every joint of my body and they tell you that you have to keep moving or you could lose the ability to move, well my question is how can I move when doing so causes so much pain that you just feel like giving up especially when you know there is something that has helped you cope in the past but now you are being told you can not have help because this is how the government has decided to control drug abuse by taking away the medicine that was helping you get some relief from pain and thus helping restore your quality life.
My name is carolyn im 42 for about 10years ive been suffering sever tmj pain my jaw is deterated i can hardly open my mouth theres no soft tissue left around the condlye this pain is so bad my insurance wont pay for the surgery that i destpertly need in oder to function i use to be on oxycodone but when my doctor died i cant get no help im so close to give up i cant function at all its terriable pain i dont no how long i can last i feel like im a animal at a slaughter house waited to die
I am a 71-year-old female and live just outside Austin Texas. Last June I was forced into detox by the pain management group I was with since 2010. I never broke the contract or asked for early refills, I was just being managed with pain medication. I believe they were under investigation and I got thrown under the bus for that reason. I now am without any medication to manage my pain and a new doctor will not give me anything because I have been through detox. I no longer have any quality of life and never imaged at my age I would be “collateral damage” to our medical system. I am pretty much homebound now and really under great duress from the pain and my mental state.
I was a professor for 30 years until stricken with Small Fiber Neuropathy. Now it so difficult to obtain the only medication that is able to relieve enough of the pain to give me any semblance of quality of life. Never abused my prescription meds. My doctors are now afraid to help. So fed up with the system that throws out the baby with the bath water. Seriously have considered the worst. Please help us take plan B off the books and help true pain sufferers with chronic conditions acquire their much needed relief. Shame on our government for doing this to us.
I’ve had a chronic pain issue for the last 25 years. I was in a car accident caused by a drunk driver when I was young. After multiple spine surgeries I ended up with Arachnoiditis. After many years of suffering I finally found a pain specialist who got me on a pain regime that gave me back a quality of life that was manageable.
For over 20 years I was on the same dose of pain medicine. I will never be pain free but it made my pain tolerable. During those 20 + years I’ve never needed an increase or an early prescription refill. At my pain clinic we are given mandatory, random drug tests to insure patients are not taking medicine that is not prescribed to them or illegal street drugs. It also insures the patient has the correct levels of his/her prescribed medicine in their system. I have never had a bad drug test in over twenty + years.
About six months ago my Doctor explained because of new laws my pain meds needed to go down substantially. Instant panic set in because I was petrified my severe unmanageable pain would return. I’ve gradually reduced my pain meds and my quality of life has changed as well. I can not understand how the government can dictate how a Doctor treats a patient. I understand there is an opioid problem but it’s not a problem caused by chronic pain patients like myself or the professional pain specialists that treat us! Why, after being on the same dose of meds for TWENTY plus years am I being punished because of irresponsible Doctors? Not all chronic pain can be managed with the same dose of medicine. It should be up to a professional pain Doctor how his/her patient should be treated. My quality of life is being threatened and it is wholly unfair. You are going to see an increase in suicide and elicit drug use because chronic pain is a real problem and when you start taking patients lifeline away after all this time when it’s been working you are just asking for trouble! It’s not fair that a certain group of people are being targeted because of the mistakes of others! I deserve to continue the same dose of medicine I have been on for the last TWENTY + years! I am not the problem!!
Hi, I’m posting here because my “pain is punished”. Had 2 fusion surgeries (failed) for lumbar spine. Started with L4-S1, both titanium screws in L4 snapped about 10 months after surgery. Revision surgery needed to go up to L3 because the snapped screws could not be removed. My x-rays now show cracks in both sacrum screws. Bone never “grew” to complete the fusion. So now there’s 8 screws and 4 are broken, and it hurts, to varying degrees, all the time. I figure that you have an issue too, maybe worse, maybe better. If I had another surgery, I’d be doing what has already failed twice, RIGHT? Primary care doctor is very caring and would like to help me, but she is afraid to. She prescribes what the surgeon was allowing when he dumped me and passed the buck to her. Surgeon was treating pain rather conservatively and pushed the organ damaging NSAIDS and Tylenol. These meds help a bit, but opiates WORK WELL. What else is there? The pressure being put on doctors is sad, as they likely were taught to let people be at least comfortable. There must be an answer to this problem. Especially for those with absolute proof of a bad condition. Thanks 4 reading
I HAVE BEEN SUFFERING FOR OVER 10YRS WITH BACK PAIN 2 DISK’S GONE IN MY BACK NOW I’M IN PAIN FROM 2DISKS GONE IN MY NECK AND BACK SURGERY TOOK 2HRS WHEN IT SHOULD HAVE BEEN 45MINS NECK NOT DONE YET I STILL SUFFER FROM THE WORSE PAIN IN YEARS SO I DIDN’T ASK FOR O.C. THE DOCTOR PUSHED THEM ON ME NOW NO RELIEF FOR THE PAIN N STILL ON THOSE MEDS WHICH I NEED EVERYDAY AT 67 NEXT MONTH SO WE CAN NOT STOP OR I CAN’T MOVE TO LAUNDRY DISHES VACUUM AND RELAGUER SHOWERS
I wakeup everday hoping I can walk and not fall on my face.Struggling to make it to ladies room.Then coffee pot.Pain hot,burning,running down nerve pathways from head to toe.Try my best to fix something to eat.Clean kitchen,do things in spurts as able.Alot of things Im not able to do anymore. Family doesnt invite me out to beach,functions,due to very embarrasing seizures are back with a vengence.Due to recent cut backs,just waiting for nursing home at 63! Muslces so atrophied now wont be long.Did I mention I cant sit? Wheel chair will be a nightmare for me! I was in good shape just 6 months ago.Now bed bound,house bound.Not being punished being tortured is more like it. Ex broke the neck with a sucker punch,took them 20 yrs to fix that!I know I broke back twice doing very hard work,totally my fault. Always worked like a man trying to make as much as a man! Had three lovely mouths to feed.Then there was five more for 20 yrs,grandkids! Did not go down without a fight!! Joanie…former roofer,cement finisher,meat wrapper,siding installer,dance instrutor!
40 years of chronic pain from multiple conditions; with new CDC guidelines and my GP (PC Doc) being persecuted by license board, he turned me over to PM (pain management service)– which gives me conflicting mandates on what I need to withdraw from, every time I go; my body is going nuts from all the med changes! Why couldn’t they leave well enough alone? I was able to function on those meds… now, I’m being forceably tapered, and am unable to keep up with my normal activities, because of pain and malaise. I am also unable to sleep well, and am often suffering anxiety or depression from pain and inability to function.
Broke my right leg about ten yrs ago, surgeon fixed it and hacked it, three more surgeries later still in pain, became diabetic in between, can’t walk right, seeing a pain management doctor, due to working outside all my life I developed arthritis in my spine, neck and both my hands, I have horrible pain that run down both my legs, my head hangs down because I cant hold it up, my hand are in constant pain, I sped everyday and night in pain, I can’t get more than four hours of sleep at a time, spinal injections worked for awhile but don’t anymore, pain doctor keeps pushing for me to get more injections in my spine that I can’t get yet due to being on blood thinners for stints that were put in my heart, I tell him the injections don’t work for me and they are painful but he does not listen, he tells me he can’t increase my pain meds because the government will pull his license, people who depend on their meds can’t get them because of people who abuse them, I sit here in miserable pain with doctors who hands are tied.!!!!!!!!!!
Don’t they realize that they are killing people right and left not just all of the chronic pain people like me but the people in the VA hospitals that need their medication but cannot tell a nurse or a doctor because of the condition they are in but you can see it in her eyes and cannot do anything about it they are allowing the veterans that have served our country and now live in the VA elderly homes die from pain they are just taking their medication away from them without giving them anything for withdrawals from the medication they have been on for years for the pain that they have endured serving our country making them suffer where is the fairness and that why does their medication have to be took away from them These are our elderly vets please help them
I was diagnosed with Fibromyalgia in 1985! I have seen anyone and everyone that seems to have a legitimate treatment. Will not be redundant with my experience and loss! However; I was place on Disability by my corporation in 2003 due to my Doctor’s advise.
I have been on pain medication that includes opioids for 17 years. I have gradually restored some quality of life by increasing activity and controlling the pain with my prescribed medications. Increasing strength is the only consistent way to reduce my pain.
Now I am told by my current doctor of 7 years that he will never give me the same dosage of pain medications in the future. Please believe me when I say I have never increased the strength of my dosage of pain medications! And, I have never taken more than originally prescribed except for surgeries or other injuries with Doctors Prescription.
Now the pain is increasing and I am loosing strength.
I NEED HELP AND I WANT TO HELP.
In closing I have found Acupuncture to be very helpful. No, it will not replace the pain medication and it can get expensive if you have a qualified Acupuncturist with an Eastern Medicine background.
Other than Rallies how can I help??
I have a rare tomorrow wrapped around my spine, 10 years now I’ve been on pain medication. Since then and I have been cut off by two doctors for no good reason. They don’t want to deal with the government BS. At first I was ashamed that I had to take pain meds because it was taboo and I did not want to be labeled as a drug addict . I finally got a doctor that understood my situation knowing that I could not function without pain medication. I take my medication as prescribed. No one would ever even know I was on pain medication or even in pain because I hide it so well. It should not have to be this way. What can we do about it? First of all stop this war against opiates in general. Let us specialize this to be illegal drugs that are flooding into the United States and can’t be controlled. But the government has figured out they can control us. They think they have made a dent in this problem but in fact they have caused more problems.People have turned to finding drugs on the street or they just give up and kill them selves. I know because I have been there. In the 10 years I have cut my medication in half , No one really wants to be on pain medication ,I know I don’t. I don’t do it to get a high. I do it so I can get out of bed and try to function like a normal person would. It would be impossible to do without pain medication. I try to help the elderly and does more unfortunate than myself. That’s where I see all of the people that really need help. Fighting a make-believe war against opiates does not help anyone! It’s a gross miss use of our tax money. Let’s fight a war against drug dealers! Stop taking advantage of people that really need help with their pain , I would really like to go to this rally but I’m afraid my body cannot handle it. Also I know it won’t do any good. I government has abandoned us, let us down, and actually labeled us as criminals. It is such a sad situation . I’m sure everyone that has anything to do with this so-called war against opiates has never been in chronic pain. I wish they could be in my shoes for just one hour, then I’m sure things would change. Of course this is impossible. What are we to do? Go out on the steps Of the state capital and suffer more? Like I said this will not do any good. Again what are we to do?
I would tell you it’s not just chronic pain that is an issue. Two years ago, I had to have a hip replaced as the long-term result of a degenerative childhood bone disease from 60 years ago. The surgery was more complex and invasive than a typical hip replacement operation and resulted in, not surprisingly, my pain lingering longer than it typically would. The surgeons were being pressured to limit the time on opioid pain medications. In addition, because of a blood clot I could not take some other alternative pain medications. I knew if I could take the stronger pain meds I would be in severe pain and not be able to rest because even as it approached time for my next pain pill, my pain was difficult to deal with. The surgeons were being adamant that they were not going to refill my prescription. I was very upset and scared at what I was about to face.
Luckily, my primary care physician took over my pain management and continued my narcotics for another 3 weeks. My pain subsided and I weaned off the narcotic medication with NO problems.
If I was ever in need to have the other hip replaced or need other major surgery, I would be VERY concerned about pain management and might postpone needed surgery if I could not be assured of needed pain medication.
Pain management can NOT be done by regulations or a cookbook approach. Doctors must be able to meet the patient’s legitimate needs for strong pain medications.
I have severe spinal, shoulder and knee issues, complicated with fibromyalgia and multiple surgeries. My pain Dr retired in 2011. Since then, the only care I receive is injections and cortisone shots which have become costly due to insurance changes. I do understand there is a problem but feel it has affected those who are in true need. Practices, as a whole, have strangled Drs from true treatment of those in need. Even after surgeries, they are afraid to prescribe. Something needs to be done to help those in true need!
I had an accident on my job 1999 and my insurance that i paid in to was not really helping and when they sent me to there doctor it turned in to prexisting injury and lost that job so here i go to medicaid and ssi thru the years my knee injury were scoped 3 times took all of my cartilage so im bone on bone and im miserable . And a few years after i fell while was on crutches landed me in the Hospital with pinched nerves in my back and a torn tenddon or ligament at the left shoulder so you know why i need my pain meds , and i was fine with what i was getting and then it seemed like i was being tortured all over when was told it was the State doing the torture . It is really to bad the Doctors dont fight for there patients as they take more and more away from me and have to go through the with drawls and the pain increasingly gets worse , But why ?
It’s bad enough that this pain has ruined my life but what’s even worse is trying to get a cure for the pain
Doctors are too scared to prescribe pain medicine, pharmacists treat you like a criminal and make up every excuse possible not to fill your prescription
In Los Angeles I had four doctors but put out of business over a 15-year. I’m sick of being treated like a criminal just because I have pain and I take opiate or narcotic medicine to cure it. These medicines are the only thing that works as well as it does and I will do it no matter what I have to do.
This is my problem and I don’t need politicians interfering. obviously there are notoriously wires they know nothing about pain nothing about medicine.
There is not an opiate crisis in this country, there is an addiction crisis but that’s not the fault of the medication or the people who do not that use it properly.
Punish the abusers not the patients!!!!!!!
The local CVS won’t fill a prescription for pain medicine until the 30th day then if they’re out or can’t fill a full prescription they won’t do a partial which means that once you do go there on the 30th they think I may not have the medication it’s a horrible system with way too many people involved.
I would like to become involved in some type of local patients rights group in the Los Angeles Orange County area
I was in car acc 1988 was in hospital for 8 months then to old folks home 6 mon . istarted taking meds 03 and before i was given any i had mri xrays cand drug tests every month for15 yrs. Now i am told my meds that help me stay working is going to end doctor doesent want too loose license and said it was the law ! .bull shit law made by people who have no idea what pain is. And that every body has the same tolerances to pain . i followed the rules and they keep treat me like criminal . no wonder people are dying from heroin. I could go on for along time telling my story . i just need help. Please dont take my meds.Raymond
I had a work injury in 2000 , my employer told me it was just a “pulled muscle ” , but after a few months of dealing with it they started giving me lidocaine injections. turns out I had a torn rotor cuff , since that surgery i’ve had 6 more and was put on pain meds. now i’m in a different city after having to retire from my job , the pain mgmt docs don’t care about what , where or when your pain is as long as they’re getting paid EVERY month. I don’t need my meds every day with crps only when i’m in pain but they want to see you monthly , that costs a lot of money that we don’t have . The docs at the pain mgnt clinic couldn’t pick me out of a line up of 2 , but y family doc knew every thing about me , so which one is better ?
I have been praying for someone to get the media to let people know what’s been done to us-but I was sick in bed in withdrawal for an entire month wishing to die!…Where are the families & friends who should be standing up for us in outrage at the barbaric treatment by Medicare? I was in a CONSTANT state of cold chills, accompanied by nausea, diarrhea, headaches, watering eyes (& I have medically diagnosed dry eyes!), etc. Now I am trying to function with grossly inadequately treated pain from a failed double bone fusion in my neck (no surgery possible), severe arthritis in entire spine, left shoulder is bone-on-bone w/ neuropathy (tingling into arm), right bone-on-bone knee; and I already had a hip replacement (+ revision) & right shoulder replacement. I am angry & frightened at having to become a recluse because I’m in too much pain to function. Medicare made no differentiation between addicts & chronic pain patients-WE are left in severe physical pain, when we have done nothing wrong! I have NEVER been “high” on my pain meds, have always passed the monthly urine tests, have never taken than allowed-why are they torturing us!? Has Medicare now decided that tolerance is an old-fashioned concept & no longer exists?? I thought about medical marijuana, but my pain dr. said it would not be strong enough for my level of pain. I am now becoming an activist-tell me who to talk to, who to write to, what TV & news to contact-I’m IN! I will be at the rally with my home health side & my walker-God bless us all…Anne
I am 60 years young with a degenerative disc disease on top of an old back injury from work in 2000 . Left knee is bone on bone but they will not fix for they say I am ” too young ” . At 57 I could no longer hold a full time job due to my pain and it took me a better part of 2 years just to get an MRI jumping through the Husky insurance protocol hoops and another year or so to finally get into a pain management clinic . By this time I could hardly stand for a period of time let alone walk my Pug for my Primary Care was too afraid to write and scripts for pain other that Gabapentin . As I mentioned , I started pain management in Dec. 2018 and still have not received the ER ( extended release ) meds prescribed to me by me Federally approved Specialist doctor . They have denied by might insurance EIGHT times reason being ” I DO NOT NEED THIS MEDICATION FOR THE DANGER OUTWEIGH THE BENIFETS ” I am speechless . Who are these suits ? Oh , and I love how THEY ( the media ) constantly talk about addicts dropping dead on heroin and show a bottle of pills as the story goes on . They ( the law makers ) keep passing laws and forget those that are in chronic pain and now have to go back to make changes because doctors and patients are suffering . I failed to mention I am on half of my pain regiment which is an instant relief which helps just a bit but is supposed to be combined with my ER
I had AML (Leukemia) and I had a stem cell transplant which cured me. I was alive but not living. Like most who went thru that I had many problems from the high doses of chemo which include neuropathy and severe back pain. To make a long story I had a neurostimulator put in my back and other pain controlled with medication. I would have no life without medication
At the age of 10 I was diagnosed with mild scoliosis that remained asymptomatic. I even deployed to Afghanistan as a Dept of the Army civilian in 2010 and past two physicals. I was deployed for 16 months and often had to wear 40 lbs of battle gear climbing in and out of every vehicle (including German C160s) imaginable! I even rode in MRAPs which bounce riders all over the place and had no issues.
On February 22, 2015 i was living in Germany and employee as a civilian with the Dept of the Army. I arrived at work during an ice storm and exited my car, walked to the passenger side and when I reached out to grab the handle I slipped. Like a cartoon character I went airborne landing on the concrete curb. I fell another 2 times as I attempted to get up. My coworkers finally helped me to my feet which is when I thought I might be hurt. I made it to my office and managed to log into my computer before the pain was so excruciating I could hardly breathe. A co-worker took me to a German ER who said nothing was wrong and I just needed to rest for a week. After a week I was worse so this time (because of worker’s compensation (WC)) I went to the Army clinic. The doctor sent me to a German facility to get an MRI which showed I had 2 badly herniated disks. At this point I was signed off work and spent the next 10 months on WC trying every conservative treatment offered. I even spent 2 weeks in an inpatient rehab hospital where I received 2 sets of steroid injections every morning. Finally, the German surgeon said I must have a fusion which I agreed to do. When I awoke from surgery I was in excruciating pain and I couldn’t move my left leg. I spent the next 2 weeks in the hospital before being transferred to an inpatient rehab hospital for 3 more weeks. When I came home I was very sick and on day 4 of being home I was rushed to the hospital with a very high fever. I was totally incoherent. I remember the doctor coming into my room at some point and telling me it looked like I had a bad infection around the hardware and that they had to take back to the operating theater but it’s more like a dream then like reality. Anyway, I had the second surgery and spent the next 13 months trying desperately to recover. Unfortunately, I just kept getting worse and worse and in October I could barely get out of bed. With every move brought this feeling that my spine was crunching apart. Enter my second, surgeon (a 36 neurosurgeon) who was nothing short of a miracle! He took me back to the OR and over the course of 16 hours (2 days) going into through my back and my side he corrected all of my misaligned vertebrae and facet joints, replaced the disks and fused my spine from T11-L5. I was so much better and spent the next 1 3/4 years doing physical therapy, doing follow-ups and diligently seeing my pain management doctor (PMD) every month. You see my surgeon as good as he was could fix my back but he said he could never take away my pain because during the very first fusion the orthopedic doctor had misplaced a screw and accidentally put it into my spinal canal. That one little screw is why I was in so much pain, and even after everything else, why I was still unable to control my left leg. Alas, I have a permanent spinal cord injury!
Now, it’s November 2018, I’ve been doing rehab and seeing my PMD and doing pretty well. I’ve been able to drive, grocery shop, and even cook some. But now I have to move to Texas because my husband job transferred.
We arrive in San Antonio and one of the first things I do is find a family doctor. I went over my history and ask for a referral to a PMD. He accidentally gave me two, but I thought one was a surgeon, so off I go.
I go to the first PMD thinking I was going to a spine surgeon the name of the clinic was South…Spine and…Clinic. When I arrived the waiting room was full of people, probably 75 and I already felt uncomfortable. I was used to the German system where everything is quiet and orderly and refined. Anyway, my name is called and I head toward the person who before I even reach her has her arm extended and in her hand is a urine specimen cup. She thrust it at me and tells me to leave the sample in the bathroom. This mind you is all happening in the waiting room full of people. I was mortified! Here I’m thinking I’m there to see a surgeon and get established and thinking the US has sunk to a new low when you now have to give a urine sample just to see a surgeon. Anyway, I mention not being comfortable but give the sample and am then led to an exam room. Soon after this 20wometjing Asian female flings open the door and asks if I’m Mrs X. I say no, she closes the door. A short time later she returns, laptop in hand and asks why I’m there. I tell her my history (I also give her a word document that has my entire medical and surgical histories as well as a list of my current medications. She starts off by lying to me about the CDC guidelines. She then tells me I’m taking 360 mg of morphine per day (she combined all the opioids I take) and then tells me she interventional and if I’m prepared to have an SCS or intrathecal pain pump she doubts she can help me. She tells me the drugs are no longer helping my pain but she can give me 50 mg of morphine a day anyway. I said no thank you to the invasive solutions, being up and read the CDC report and guidelines (repeat the word RECOMMENDATIONS) and said, “isn’t your willingness to presecirbe an opioid you say isn’t a helping me the reason an opioid crisis exists?” She huffed and gets up and says I can’t work with you and leaves.
Off to the second referral. I enter, much calmer nicer environment this time. I’m called back, handed a urine sample cup again and then led to the exam room. A very young male doctor enters, again laptop on hand. Asks several questions all the while typing and not making eye contact, stop typing and says, “I’m an interventional doctor and so I won’t charge you but I can’t help you.” Totally deflated I leave sobbing uncontrollably. I am completely lost. I had been told by my German PMD that I’m not a candidate for an SC or pain pump and would likely have a hard time finding a pain doctor in the US because of this ridiculous opioid crisis. My German PMD had just returned from a conference in Boston and he’d heard all about this crazy crisis and the CDC guidelines and he and his other non-US doctors couln’t believe it. In Germany the doctors dictate what treat,ent a patient needs not some government agency. Yes, there are government agencies who provide checks and balances but the doctors are still in charge or patient care and if they say this is what a patient needs that’s it. In Germany opioid prescriptions are written on social forms and they’re very controlled but that’s about it. If the government agency who oversees the forms has a concern they reach out to the doctor. If the doctor says yes I wrote the prescription and it’s real the matter is dropped. They just make sure the patient isn’t getting multiple scrips from multiple doctors. That agency would never question a doctors treatment of a patient!
I returned to my family doctor and he said both PMDs had contacted him and he was sorry but they both told him I was a drug seeker and then wasn’t anything else (related to my pain) that he could do for me. Thankfully, I met a fellow pain warrior in physical therapy who recommended her PMD. I sent him my records and he agreed to see me. When I went he said, “wow you’ve been through hell what do you want to do?” I was shocked…finally a real doctor allowing me to have ownership in my care! I was elated! We talked about my options and he basically said at this point my only option was pain meds. He did adjust what I take and the dosgaes but so far it’s working out for me. I do have an increased level of pain but he allows me to call him and that’s been great. The pharmacy he uses is small and I can call them too.
They have restored my faith in the US medical system and at least for now I feel like I’m going to be okay.
I personally have had to live with severe pain for 20 years. I had to have total spinal fusion due to a double major accute spinal scoliosis deformity. My right lung was crushed and my heart was being crushed by the spine. The second surgery was a nightmare. My Dr. was not prepared with a back up Dr. My 2- 1/2 hour turned into a 10 hour surgery and I almost died. I was in ICU for 5 days trying to stop the bleeding before being sent to the floor. There I received horrific bad service. After having all of my vertibrae bones severed in half on the front all of my insides taken out then rolled over and cut up the back to my neck, the bone cut off to the spinal cord, several rods inserted and the graft laid onto the bone. The bone was bleeding so bad they tried to stop it but could not. Finally they just put in drains and prayed. My Dr. left shortly after my surgery for a ski vacation, and left me the bad care of his assistant Dr. Where I was not given any pain medication for 18 hour shifts, three times in 5 days. On the 3rd time I called 911, and the nurse ran into my room and jumped on me to rip the phone from my hand. When she finally pulled it from me I had blood running out of my mouth, and from the pain had grit my teeth so hard that I cracked several molars and my lower jaw colapsed. In all, over $10,000.00 of dental damage. That nurse loosened all of the just put in hardware, sheared the heads off of 6 of the 3″ screws the Dr. had just put in, due to her weight @ 280 pounds or more. And caused massive nerve root damage that would make crowning at child birth seem like nothing. But it lasted day after day, week after week, and month after month for over a year. Finally after visiting several Dr’s I found the 2 top scoliosis Dr’s in the nation. It took both of them and a crew of neuro surgeons to decompress the damaged nerves, to put me back together again the best that they could. I was told and shown the reports that I would have irrrepairable nerve root damage to 5 levels in my lower back due to the attack, for the rest of my life.
Now I live everyday in pain. I can somewhat control it with pain medications. It took several years to get the right blend where I could balance my pain enough, that I could build a great company to recycle Ag post consumer waste, and supply to US and foreign users alike. 17-20 million pounds a year saved from our landfills or being burned and buried in south 40. I found large corporations to use our products, and help save God’s earth. This had never been done successfully in Oregon before. Over 24 other companies had tried and failed. But even though it was extremely difficult, with my Lord’s help, He directed me where to go and get it done. And that I did. I built my company on my knees because I could not sit for extended periods of time. And I was the Pres. Sec. and accountant ahead of payroll in three states alone. My days were 14 hours 7 days a week. While also raising a daughter and home schooled her. I look back and don’t know how I did it. If It had not been for My Dr’s who assisted me with pain meds to semi control my pain, I could never have done it. I would most likely be dead and gone. Few people can live in that type of pain and survive. Many are forced to the street for drugs just to live. WE the chronic pain victims, are abandoned and hurt by all the new laws. This is un exceptable in America! The politics are murdering and killing many Americans, including Vets, who have already sacrificed enough for our country. And now all of us are being forced my this legislation to suffer or die by beurocrats who do not know what real ongoing pain is. They lump us with the addicts and throw us out to gain political points. We are caught in the middle and abandoned to suffer until death. Is this what America is becoming?
Our legislaters should be concerned about us! We need to have the medications to survive and have some sort of life with controlled pain. Where are OUR RIGHTS TO HAPPINESS? Why are we being used and sacrificed for an epidemic we did not start or are even a part of.
I now am facing more spinal surgery for my neck, due to the previous fusions. And my lower back hip joints, again from wear from the previous fusions. It’s causing nerve pain down both arms and into my hands where I am loosing the ability and strength in my hands, now both need surgery. So now I have severe pain and more surgery with additional pain. All while the politics are taking away all of my meds!! Isn’t there a Dr’s creed is to “due no harm?” And now they are being forced to harm us by politics telling them how to practice medicine. People who are NOT DOCTOR”S telling them what to do, how to do, or they will take your licence!! Sounds like RUSSIA. Where are our freedoms, the ones who follow the rules?
People cannot stop others from doing what they want to do, PERIOD!! The individual has to stop it on their own. Our Policy People have not learned the basics. If someone one wants to rob a store, they are going to do it. If they want to kill someone, they are going to do it. Reguardless of the laws on the books. DO NOT PUNISH THOSE OF US WHO OBEY, INSTEAD PROTECT THOSE WHO ARE DOING THINGS RIGHT! We too have a “RIGHT TO LIVE” given to us by our forefathers and OUR BILL OF RIGHTS!
This short sighted view for expedency has caused grave harm to thousands here in Oregon, and MILLIONS across our country.
I,have lived with chronic neck and back pain for over 10 yrs. I am not an addict . I go to a reputable pain clinic I follow the rules and I take the meds as prescribed. But I am being punished and hurt by the CDC actions. I,have had 3 neck surgies and about to have a 4th I have 4 bulging disc in my back i suffer every day with the meds since they have taken over half my meds I barely ger out of bed .
I am a chronic pain patient and have been since 2010, after failed knee surgery, followed by a revision knee flap. Prior to this surgery, I was working for Florida Health Department as a Registered Nurse. I was referred to a pain management doctor a few months after the revision, and have been going to this particular doctor in Ft Myers, for almost 9 years. Over the past 9 years, I have been denied pain medications by some of the pharmacies in town, because someone there had decided I didn’t look like a patient in pain. My daughter and I were forced to drive to numerous pharmacies each month to get my prescriptions filled—sometimes driving to 7-8 pharmacies before finally finding someone to fill them. I then discovered Prime mail service offered by my insurance company, and started mailing my prescriptions out of state to be filled. This certainly made our lives easier.
In July 2018, Florida passed a new law with a formula for maximum amount of pain medication each patient would be prescribed, based on the premise of being at a higher risk of overdosing. A few weeks after this law was passed, I was immediately decreased on two of my pain medications, even though I had just had a total hip replacement a few weeks earlier. I then had the second hip replaced in November and was told my pain medication would be decreased even further. After I complained, they agreed to let me stay on those medications for one more month, before further decreasing those meds. The thing that I find amazing is this–for 8 years I received my prescriptions based on my diagnosis of chronic pain. Once this law went into effect, my pain was no longer considered chronic pain and that was the reason my medications could be decreased, according to this new law!
Thank GOD that the two hip replacement surgeries, have decreased my pain level substantially in my knees and I am able to tolerate the pain with the decreased pain medications I am now taking, but have been told that I will be prescribed even lower doses when I return for my next appointment in March.
I am so glad there is a movement to protest this outrageous treatment of patients who have chronic pain. Florida has such a large group of senior citizens who endure chronic pain, and no one should be punished for having pain, just because there are overdoses and illegal users/sellers. I was worried that I was going to have to start seeking my pain medications on the streets! These pain management doctors have read into this law that there is a maximum dose allowed, when in fact, it is a suggestion. Let’s all rally for our rights to get some relief from pain.
In 1993-the left half of my pelvis and left hip were removed due to cancer-Chondosarcoma. A artificial hip was inserted while the pelvis was reinserted with 3 steel plates and 20+screws. 3 surgeries later over 250 non removable antibiotic beads were inserted to stop a severe infection and the artificial hip was removed as well as the left half of my pelvis along with the steel plates and all but one screw. It was left in because it was too dangerous to remove. These surgeries left my left leg 1 inch shorter changing the way I walk and causing the start of chronic pain in my left hip/pelvis and lower back. Since those surgeries I have been back to the OR table ten more times. Everything from gall bladder removal to a cervical discectomy where 2 discs were were removed from my neck and a steel plate with 6 screws were used. I have also had a large cyst removed from my throat as well as life saving Bariatric Reversal surgery in Nov/Dec. 2018. All of these 14 surgeries have left me with severe chronic pain, forced me into disability retirement and I too am dealing with pain Drs that are afraid of losing their licenses and have cut my opioid pain meds way way down leaving me with constant pain again. I am so tired of the pain and the Drs being afraid to help me. Thanks for listening.
I am a chronic pain sufferer due to two separate spinal cord injuries – one and a half years apart. Both were due to disks in my back rupturing and the disk material crushing my spinal cord. They were spontaneous ruptures with no trauma or accident causing the injury. Luckily my spinal cord was crushed but not completely severed. (My surgeon described the pain from this as being the same “as if someone beat your spinal cord with a hammer”) Excruciating is putting it mildly! Within a few hours, I became paralyzed from the waist down with no sensation. After surgeries to remove the disk material I was told that I had only a small chance of regaining any sensation or control of my lower body. I say I am lucky, – because against all odds I did start regaining movement and sensation. As sensation comes back there is a lot of pain involved as each nerve regains some signal. I am positive I would not have been able to put up with the pain through the injury and then over ten years of physical therapy without the pain medication I got. Many different types of medicine were tried from from pills to injections and inhalants. Some worked better than others. We found a combination that worked well. The ones that caused me least side effects were opioids. I took very strong, supposedly addictive medicines for almost daily for 15 years. I NEVER became addicted. Nor did I use more than medically necessary for my pain. After 20 years I am now only taking medicines as needed. Sometimes I go weeks without needing them. I live with the knowledge that another injury like this could occur in my future and it worries me that I may not be able to have the medicines I need. I now find it difficult to get doctors to prescribe those medicines to keep on hand for when I do need them. I also have great sympathy for others who still need those medicines daily. Pain patients NEED strong medicines to improve their health and quality of life. Lack of self control by people who misuse medicines should not be a reflection on patients who are in pain. Politicians and Doctors who think they are helping addicts (who make a choice to take too many drugs) are at the same time hurting patients who (through no choice of their own) find themselves in unbearable pain. Maybe my injuries have hardened me, – but compared to patients suffering in pain, – I couldn’t care less about what happens to those who willfully abuse good medicines! Don’t punish pain patients!
I have severe rheumatoid arthritis and my pain medication has mostly been jerked away from me. I’m never getting better. I will slowly get worse. And I am treated like a drug addict every time I have to ask for pain medication.
Hi. I got sick February 1, 2007. I found a lump on my right Breast and it was small but I wanted it checked. I went to do all the testing and it came back invasive lobular carcinoma Insitu, which is cancer derived by estrogen. To live long I opted for a double Masectomy verses just the right one off. After surgery I had to get a complete hysterectomy which is all my womanly gone. Then I waited another year to get reconstruction surgery on my Breast. During all this time I was on about 20 medicines. The chemo tore me up and made me so sick I thouht I was dying. I was in shock and in a bad state of mind. My surgeon said I can’t treat her unless she is stable so he ordered me 2 meds to help that situation and the pain med I was on. During this treatment is when I found out I had fibromyalgia, CFS, sciatica, Piriformis syndrome, lymphadema and so many more conditions. After my breast were done I had to go thru 3 more surgeries one for another reason and 2 for my breast. I been on a pain med for 11years and during these years I had many doctors tell me I’m pyscho and need mental help, it’s all in my head, I don’t have pain. Pain medicines don’t help fibromyalgia which is WRONG. They ease my pain greatly. I went to a couple pain clinics who referred me to another one and another one. Then I went back to my pcp and she treated me like I was a drug addict. She said I’m taking you off of all this right now you are getting high off of these. I said no I’m not I don’t get high on medicines. I never did drugs in my life. I take it for the pain I’m in. She through 2 sheets at me and told me to leave. After that I thought I have to advocate for myself, these doctors have no heart, don’t care about the true pain I’m in. I went to another pain management. At first they told me we don’t give meds out to help with pain only injections. I said really because this person referred me… That changed what he said to ok let me go get the actual doctor. They started me on the very lowest dose of an extended release only. I took this med even though it didn’t do a thing to ease my pain. I talked with the doctor an actual Doctor about 3 months after with nothing helping me. I told him look I am here for you to help me control my pain and for no other reason at all. I didn’t ask to get sick but I did and trust me if I could remove it I would, I want my life back but I can’t have it back so the least I could have is some quality back into my life for me, my husband and my 3 children who lost their active mother. I’m not on drugs and I don’t do drugs. Actually I’m afraid to die. I want to live a very long life and having breast cancer put the fear in me of losing my life. He changed his toon for a good while so he put me on a better pain med but only extended release. I had nothing for flares, Breakthrough pain or onset of pain. After being there going on 3yrs another doctor came in one appointment
I went to and told me I’m taking you off your pain meds starting today and your anxiety med too. I talked to him nicely he laughed, I said if you could feel what I do for one day you would understand. He said yes I’m glad its you instead of me.. I sat there with my mouth open and eyes big like what did you just say. I said it’s easy for you to come in and tell me your off your meds when I suffer everyday. He said I’m a doctor and I can do whatever I want, see my name tag. I said thats it. I will not put up with anyone treating me like you are right now. I said I’m done coming here and you will not ever get a good review from me. I will turn you in. I walked out and I picked a total different pcp from a different area and it’s a very nice place. This needs to STOP. IT’S UNCALLED FOR, DISRESPECTFUL, VILE, LIES when a doctor takes a vow to help patients with their pain. What I don’t understand is they give you the pain meds and you get drug tested, urinalysis, blood work and mouth tested. They look in the records to see if you are getting scripts from anyone else and if you pass these what is the problem with taking your pain medicine. If someone chooses to get drugs from a stranger on the street and it’s mixed with fetanyl and they die or overdose, that isn’t my or anyone else fault who has chronic pain, so why do we have to pay the same price as if it was us who overdosed? It was that persons choice to do so not ours. When someone murders someone does that mean we all have to go to jail? If someone robs a bank and he goes to jail or gets a hefty fine… Does that mean we have to pay the hefty fine aswell or serve the time? If someone goes thru a red light and gets a ticket and a point on their license… does that mean we get a ticket and have to pay it and we get a point on our license just as she did?
The answer to all these questions is NO. NO. NO. NO and NO.
I think I made my point very clear here.
I am an 83 year old male that has suffered chronic pain for over 15 years. Recently I moved from rural Colorado to Metro Denver and have been forced by this move to find a new doctor. The first doctor i visited refused me as a patient because of the number a oxycodone pills I was using as prescribed by my doctor in Wray CO. The second doctor I visited took me as a patient but reduced the number of pain medication he would prescribe.
I documented to the doctor the treatments I have endured in the past to try and reduce my pain. He explained that he could not increase the dosage out of fear of losing his license to practice not that it was the proper dosage. I have had three back surgeries, tried every recommended treatment and have gone cold turkey to try suboxon. If there is anything I can do to help this cause please contact me. Jack O. Olofson – jackolofson52@gmail.com
Thank goodness! Something in the news that might help our quality of life instead of making us suffer. By suffer I mean embarrassment, shame, discrimination even being verbally attacked and reprimanded and given their opinion by ignorant strangers to increasing my pain so badly that I am now bedridden 6 out of 7 days instead of 1 or 2 out of 7 before last years AZ law changes. I have one wish, that I could give everyone that reports the continuing scare hype about opioids and everyone that votes to make getting needed medicine harder or impossible to get, just one week of the pain that I am living with since 1998. After they spent that week in bed in tears from pain while trying to get the energy and positive self esteem to fight for the medicine they need and not get depressed from the negative comments and continuous obstacles insurance, doctors and the law puts in their way. I am positive this problem would be over. They would help us to get access to the medicine we need for just a little relief. People would show empathy for their fellow man and help to comfort them. I often wish I could trade this awful pain disease for something everyone could see, like double amputee. Then I wouldn’t have to convince someone that although I look OK I am in fact very disabled with severe nerve damage from more than 25 years of diabetes. The situation is so bad that their are many of us that continuously try to convince ourselves not to give up this life of pain and battle for our medicine and embarrassment of being looked at as some kind of addict. WHICH I AM NOT! I am dependent because I have been taking opioids for 21 years. I choose to be dependent because the choice between being in bed all day long in tears because of pain or being dependent on opioids that allow me to have some quality of life to move about, dress, bath, cook, live, love and even think without the constant distraction of pain is an easy choice. I choose medicine and relief. This past year my doctor reduced the prescription I have been taking for 10 years to about a third of my successful treatment levels because she told me she is scared. This is just wrong. I hope there are not too many suicides before the pendulum swings back the other way and something else makes the news. Believe me, someone who has taken opioid medicine for 21 years without an overdose ends up dying from taking too many pills didn’t do it by accident! So please don’t list it as an overdose and bill it as a national health epidemic. Instead list it as a suicide directly attributable to the sorry state of pain control and list it as a national health crisis of making people suffer more than they can handle and get pain relief to patients that need it.
Hello pain sufferers.
I have done a bit of research- Heroine is called that word because of the …Hero… feeling one gets, or some get and act as if a hero. Therefore, I respectfully suggest everyone try hard to not sound like you are trying to be a hero- be as clinical, brief, factual and cite objective, firsthand, evidence because professionals apparently look for the phrasing and attitudes that go along with (actually!) being a hero, a survivor, and dismiss what you say. Try not to just take a opioid pill before you meet- it almost ensures this appearance.
As America has increasing breakdown, the pros are becoming ever more willing and able and pushed to treat us like cows rather than the leaders of the world (Americans) so they quietly create an upper class of people- I call them the Medical Industrial Complex- where what you need, say, report, reveal, request, is to be dismissed and you are instead pigeonholed into a convenient stereotype.
Pain relief is attractive. This does not mean you are addicted. “Addicted” is just a word- you abuse the drug or you do not. In your heart, and experience, you KNOW when you take it to feel good rather than merely obtain relief.
When you become weak (decondition) and less active, you become sad, or cope quietly- so they drug you with antidepressants rather than pain relieving pills. If you are too pushy, they say you are anxious and prescribe what I call …quieting drugs… that actually do not help you cope, but help you go away due to the discomfort the pills cause. This happened to me over decades- AFTER the pros determined (taking years and years) the doctors did harm my spinal cord with a faulty, toxic, injection.
When one has to keep secrets from the staff or they get angry and unhelpful, they offer more harmful treatments (my spinal cord is inoperable as they say repeatedly, then forget, offer exploratory surgery which creates even more scar tissue) and so those of us able to use opioids at low dose, responsibly, are inconvenient, are played, deterred, deflected, set aside, and in my case, after getting pushy, downright harassed. Currently, I can list well over 12 examples of how the doctor and staff demonstrate utter incapability (Your kidneys are not there, Sir) in order to make me go away. I cannot go away, there is only one V.A., a small clinic, and have to sell home first- a big task for me.
I encourage all of you to
a) Get a paper notebook that pages do not fall out of (non perforated) and keep logs of phone interactions, appointments, contacts, and
b) a second notebook you can write what your pain was like each day, giving both the same ordinary pain but also anything novel- if you are up for it, write what you think caused the novel pain.
c) Notice the message you have to hear when you call “this call may be recorded for quality purposes?” I suggest you start recording the calls to doctors and similar if you are the type it is easily accomplished- it is very rewarding to shove their lying words back in their faces, and if not V.A., you may win easier without going to court in a lawsuit with that recording and those notebooks.
Letters from family, friends, who witness your pain limiting your life can also be very persuasive, also, if you are in good standing with the doctor, ask for a summary of the medical situation, the treatment plan, and if there is anything other than palliative treatment for your condition available.
Years from now, when many of us can sue for millions (I cannot- V.A. wont allow it) you will have records just when they defensively “lose” your electronic records. I did this and saved the day from 1981 forward. I’d be a half million dollars behind had I not done this on advice from parents- but treated like a fool, a paranoid, all the way through until I won total disability compensation. Fight and take the long view.
Best wishes, sad days for America, caught in a political game, where hatred for POTUS compels the Left (often in govt and public servant jobs) to make an example of YOU to show how our current POTUS is bad- like children told to put down a delicate china plate on the table and the child throws the plate onto the table, breaking it. I believe it is THAT bad, so prepare your heart, mind, for a nasty, lifelong, fight, and if you get really down, remember, the best revenge is surviving, thriving, and fighting them with a smile, records, rationality, and composure. Anything else just gives them ammo to brand you as a druggie to deflect from their careless or lazy or inept or reflexively negligent ways. After 35 years plus, I know this like most know their parents face.
Good Luck
I’ll make mine short. I fell from a utility pole. C1 and 2 disks are still sitting on my spinal cord 3 to 6 are fused. My lower back is not in good shape. I’m lucky after 20 years I m doing better. I still need something to get me through the bad days. Doctors have told me to use over the counter pain meds. They don’t work. If they would look at my Usage they can see I don’t abuse my pills. I recently cut a piece of my thumb off with a hatchet splitting wood for the fireplace emergency room gave me nothing for pain when I was there. they finally prescribed tramadol which does not work for me. Thank God my family practitioner Stepped up and gave me something. All I needed was pian management for two days. I called every political person I could to tell them this has to stop. I’m not a drug abuser
I too am a chronic pain victim in this spider web of ridiculous laws. I was diagnosed in my 30s with degenerative disc disease and migraines and fibromyalgia in my 40s . During this period of time I was prescribed pain medicine and always took lowest effective dose. With this I was able to keep working. I even tried sleeping without the medication so I wouldn’t get so dependent on it. I then developed sciatica pain from a car accident (not my fault) and pulmonary embolism and dvt. I still continued taking the same dosage but took occasionally at night so I could sleep. When these laws took over I was also abruptly discontinued my pain medicine. I became even more disabled and gained weight due to my increase of pain. I can no longer do things like work, exercise and just live a normal life because of my pain. I have never smoked or used alcohol in my life and now I do not seek illegal pain meds since being without my measly pain prescription. I just suffer in silence and anger everyday trying to take Tylenol to ease the tiniest amount of pain away. I hate how the doctors,pa and everyone in medical field look at you like you’re a three headed drug seeking monster when you even mention pain medicine! It makes me want to scream ! My pain does make me scream and cry in frustration! Why are we being punished for other people’s addictions? I can not understand this at all . I just turned 60 and I’d really like to be able to have a little bit of a life where I can move, exercise and take care of myself!
I’m a 55 yr old woman who’s been in chronic pain for over 30 years due to a fall off of a pony onto my lower spine and w/old age the pain gets worse in both legs and back side areas. This year I was denied my medications due to the rule changes congress has passed. I was out of luck w/no medications due to my insurance company who denied my Dr.s request for my meds. I fought w/my Dr’s office only to find out two weeks later this issue was with my insurance company who kept denying my prescription. After calling them daily for 4 weeks I finally got my prescription and I can’t believe due to the drug problem in America the People who are in pain have to suffer without their medications due to the rule changes. Something has to be done so the people who need their meds can get their medications.
I graduated from college as a Webmaster in the Internet making websites. What a joy. I loved my job so much that I would have done it for free! Being paid $75K a year and playing on the internet? I was in heaven and loved every day I worked then in 2003 my trouble started. I herniated a disc in my lower back, went for a surgery consult and he gave me odds at coming out of it paralyzed. So I stuck with the pain medicine. I was given opioids which had to be increased until the pain went away which it did and I was then able to live a somewhat normal life and keep working. Then another herniated disc and another. I was told I have Degenerative Disc Disease. I went for another surgery consult and was again denied. I cried. I did not want to stop working. How many people can say that? I knew then that my working life was over. I did not want to be on opioids so I have tried everything else. You name the treatment and I’ve done it; nerve block, epidural, radio-frequency ablation, steroid injections, etc. You name a none addictive drug, Lyrica, Ibuprofen, Naproxen and I’ve taken it. I tried everything to stop being on opioids; PT, exercise, TENS unit and every contraption sold on the Internet and I have either tried it, taken it or bought it to stop being in pain.
The ONE thing and ONLY thing that has ever made my pain level manageable is my pain medicine and now that has been reduced to a level where I am bed ridden thanks to the CDC.
1st and foremost, I am a proud Vietnam Veteran. It was important to me because my uncle was killed in Vietnam. I worked hard for this country and now this country is not keeping their promise. They told me they would take care of me and they have not kept that promise.
The ONE thing and ONLY thing that has ever managed my pain is opioids.
Pain is exhausting so please give me my life back!
I am a woman in my mid 30s living in utah. I have been battling severe depression and anxiety since my teens. My family was NEVER able to afford medical treatment or care for physical or mental health. During my adult life my stomach/pelvis has always hurt. Sometimes bending or twisting would cause immediate debilitating pain. Other times I would unexpectedly become nauseous and vomit, on a regular basis. My body pain can only be described as getting beat up, going on a long strenuous hike and at the same time have someobe putting lit matches out inside the layer of my skin. I also have had a chronic headache (it used to only be about 4 days a week) that never goes away, and now about 6 times a month it turns into a pounding migraine.
In my mid 20’s i experienced a period of about 8 months where i bled and clotted profusely. I could no longer work because of it. The pain was exceptional but I’d always had pelvic pain. I even tried adult diapers but there was just too much blood it could not be contained. I no longer owned any towels, underwear, shorts, sheets or blankets that were not ruined by blood. It was pure misery. That was the beginning of my many laporoscopy surgeries (some unsuccessful and only leaving damaging scarring), forced into menopause in my 20s and injected for 8 months with a drug that has deteriorated my bones and joints and is now linked to my dental problems and other physical issues. I have since been diagnosed with a slurry of things, most uncurable….yet claimed as “treatable” with pain meds, pt, and the drs fave “lifestyle overhaul” aka weight loss-(well i lost over 90lbs and feel worse now than ever before, doc!)
Diagnosed with endometriosis, adenomyosis, lots of unexplained adhesions, recurrent uterine fibroids, interstitial cystitis, ibs, pcos, ridiculously huge “back mice”, fibromyalgia, knees that need replacing(remember my age), migraines, chronic headache, severe insomnia AND NOW prolapses of my uterus, bladder and rectum after my last endometriosis and adhesion excision surgery almost a year ago. Which my surgeon picked up shop and disappeared to georgia less than 2 weeks after my surgery. There was no aftercare, no advice and no referral. After about 3 months his receptionist snarkily sent me HALF of my surgery report and referred me to a dr that (after 2 months of waiting) refused to see me cause of insurance, then he even refused my self pay. He would not see me at all. My original surgeon is active on an endometriosis facebook group, but refuses to respond to me. I did not have any prolapses before him. There is nothing out there MAKING jaded drs do their jobs, other than an “oath” that with my firsthand experience means nothing to them.
Now i am stuck in a limbo of hellish pain and uninformed drs who only do what their told by their corps. and their opinionated ego. My mental health gets worse everyday, even though i go to pelvic floor therapy twice a week i experience so much pain it makes ne want to stop persevering. I have over 7 appointments all 5 days this week (one was already completely pointless). I dont know if i will be well enough to attend all my appts. Then they will charge me a no show fee if i dont call them 24 hours in advance caise i am home vomiting, or crying in pain or trying to go to the bathroom.
My care and treatment has gone downhill the last 3 years. I can not find any dr to help me get better or cope or i simply cant afford self pay.
I’ve noticed Drs attitudes towards individuals with disabilities has drastically gotten worse, demeaning and even disrespectful. It has leaked from drs to their receptionists who no longer seem capable or willing to help, from setting appts or even answering simple questions.
I have been exposed to the medical world for years, most of my life. And there is a noticeabe difference in being able to find help and get referrals and recieve reatment just in the last 2 years.
People who are like me or worse off should be allowed to live. We should be allowed to recieve the treatment we need. We jump through all the hoops, we pull the red tape they use out of our own hair and off our own blistered skin.
We are not criminals, we need legal medication and real help. We all have the same rights.
1996 I was riding in a auto when a large piece of metal came off a truck , went through my windshield and hit me in the face. I suffered a brain injury, loss of sight in my right eye, and a partially crushed skull. After many surgeries, nerve blocks, RF treatment nothing worked. I was suffering from chronic pain. Before my accident I didn’t even know what that was. I used to get any meds I needed and finally received a combination that allows me to function as normal as I could hope for. I can participate in activity, chores, my children, grandchildren, travel, pretty much anything but within the last year or two between the media, and government I am being told that I have to get off them. I see politicians talking about the crisis but these folks haven’t been injured beyond conventional treatment. They have idea what it feels like to be in pain 24 hrs a day. Opioids saved my life and I’m not going to give them up without a fight. I think a class action suit to let existing pain patients keep what they have and ease regulation on new patients based on the severity of their injuries. I really don’t think we should be punished for other people using and misusing who are not injured.
I have been disabled since 2004 and prescribed opiates back then for degenerative disk disease and diabetic neuropathy. Four years ago my foot broke off of my ankle from a fall, and the quboid bone came through the bottom if my foot. It’s been diagnised as Charcot foot. The treatment I was prescribed is a $1900 C.R.O.W. boot (charcot restraint orthotic walker). I have to wear this boot daily until I go to bed. I have an open ulcer on the bottom of my foot that has become infected several times over the last four years. I am now confined to a wheelchair most of the time. Charcot pain along with my back and diabetic neuropathy have left me in chronic pain. Without opioids my quality of life, what little I have left, would be gone and I can only imagine one solution. Suicide. My medical clinic has recently hired a new Doctor named Hannah Fields. She is an overzealous opiate hysteric who specializes in Suboxone Treatment, including hospitalized supervision of the opiate withdrawel physical and mental hell, inpatient drug abuse treatment centers and as many as three weekly support group meetings. As a 67yr old man on limited social security income, travel limitations and other factors, this type of treatment program is unreachable for me. I am now being completely taken of all my pain medication and will begin withdrawel within a few days. I plan to seek relief against my provider in the Denver Federal Court for intentional infliction of physical and emotional distress, Age discrimination and also relief under the Americans with disabilities act. I hope I can survive this route but have my doubts.