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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I live with 24/7 intractable severe chronic pain. It started in 2002, when, as a school counselor (34 years), supervising 350 8th graders, a fight broke out between two big boys, as I tried to break it up. It quickly turned into 350 out of control students that broke into a school riot. I was the only one on duty. When a parent/school bookkeeper employee heard the screams from her office she went to investigate. She went to the principal’s office and screamed “riot, staff member down”. The principal locker herself in the office and made no attempt to report and neither did the resource officer in the building. The incident was buried. I suffered severe permanent injuries. I had to take a one year FEMA leave to recover. I had severe PTSD. I went to Florida where my children’s business was located to recover. Mosquitoes bit my Grandson, Daughter, Son-In-Law and 4 dogs. All of us sustained severe itching and unrelenting biting that eventually developed into lesions all over our entire bodies. We went to the emergency room at St. Petersburg Hospital where they declared we had lice. We went to many ER rooms with the same results. We spent large sums of money to of no avail. My ID doctor turned a diagnosis of dirofilaria immitis, a blood parasite much like malaria. She obtained Diethylcarbamazine after the Center for Disease Control requested a frozen blood sample. My family became well, but I became systemic caused by the delay in the administration of the drug. The parasitic disease director whose name I will not invoke, said, “This does not occur in the US.” The Florida state Epidemiology Dept declared the same…total denial. I have lived since 2005-present with severe chest pain and oxygen deprivation caused by the parasites. Elisa, Western Blot, PCR and DNA testing all turned positives for dirfilaria (the dog heartworm). Our dogs were under veterinary care but that made no difference, as they were as sick as we were. You could see worms in their stools. My dirofilaria became so painful, I ended up twice for approx one week in St. Petersburg intensive care and the Tampa Bay Heart institute. My doctor (from New Delhi) understood parasitic diseases and saved me with high dose harsh antibiotics and antiparasitics. A lot of people who acquired this have died. God has allowed me to live from 2005 to the present, 2018. I have suffered daily in a debilitated state without reprieve. No doctors understand this disease in Louisville, KY or other cities included. Every case is different and every vector carries different organisms. Doctors are not trained to deal with parasitic and different protozoans in their medical school programs. There are many organisms: mosquitoes, midges, fleas, ticks, flies, etc (vector borne disease carry), NOT just one. I have turned up with Lyme disease that started in 2012 and Bartonella that started in 2013. I have tried every possible treatment and drug there is to control the pain but nothing works like the opiates for this level of pain. I follow protocol with pain management but have been cut back due to government policies, therefore, I am unable to care for myself, eat, bathe or function at all since the opioid cutback. The opiates managed my pain only to a certain point but I was able to function and get out of bed. That is no longer the case. The human cruelty is eventually going to effect every man, woman and child sometime in their lifetime. Our government is going after the people, especially the doctors, who are in legitimate pain management in the guise it will stop drug abuse. I am an addictions counselor, a career counselor, a certified social worker and a school counselor. I have taught at all levels including college. When I applied for Social Security Disability, it was determined by the back injuries sustained from the school riot. The truth was buried no matter what scientific evidence, and medical testing I had with regard to a blood parasite even though I had positive tests. It became clear to me that Florida is a tourist state and that is why there is a coverup. Sadly, the disease continues to be transmitted in ALL states due to the denial by the people in authority, not the dirofilaria immitis, Lyme disease and many of the co-infections that occur with it. I would like for all to know that I take diethycarbamazine and miltefesone (from out of the country) so that when a mosquito bites me, I do not transmit the disease. It has now become a real problem for sufferers, doctors, and patients because there is no recognition of the disease. It leaves the patient without emotional support or validation. It leaves the doctors fearful of the DEA coming in and losing their licences. My most recent doctor checked me out last month, did not say goodbye and when I went to leave, was informed he would no longer be treating ANY pain patients. He did this to ALL of his patients. His story is NOT unique. There are a few brave souls who still prescribe, but many have dropped out and refuse to write a script for fear of the DEA. It is clearly sent through the news that 2019 is going to be even worse for chronic pain sufferers, emergency rooms and OR rooms. Lately, I have had family members that have suffered tremendously from having simple surgeries and needed to rest,but couldn’t because they were not given adequate pain medicine. It is tragic for all. Sadly, this isn’t going to save lives and it isn’t going to stop the hard core street drugs that are distributed daily. There is much news on heroin deaths, fentanyl & other illicit drugs. There is NO reporting of suicides from the people who could not handle the chronic severe pain and therefore, took care of it themselves, while their families grieved and could not understand why their loved one would commit such an act. Why are those statistics not being published? There are many in that pool of people. It is well known that the people who are in positions of wealth and power will always get what they need but the middle class and below has been literally obliterated. It is tragic for all. When will someone in our government stand up and stop the extreme madness going on. One more thing…it is notable that many people should not be driving in excessive severe pain. It is dangerous. People should take pain medication as prescribed by their doctor in order to drive safely. One more notable thing….many people were functioning on the job because they were receiving pain care under the close supervision of a doctor. Those people will no longer be going to work for they cannot tolerate the pain they are under. I am excluding fields where people cannot take pain management on the job, but many jobs are attainable with pain management and close supervision. It will be interesting to see the workforce dwindle and become erratic as we continue these “perceived solutions” to stop the hard core drug addictions, distributions and people who do no work other than selling, using and distributing themselves. It is tragic.
In 2010 I was hurt on the job . I had surgery on my shoulder & a pain stimulator placed my spine in hopes that would help with my pain . No one told me that I’d have horrible pain at the battery site of my pain stimulator . I also hurt my neck in the same incident . After 25 years of nursing my career is over . I’ve been battling work comp for 8 years now & now this . They take away my pain meds . I was in 2 % danger zone is what my pain management Dr told me but the FDA when asked by my Dr if he could treat his patient on a case by case scale they said no they were going to cut pain meds all across the board . Because I have PTSD I take klonopin for this & panic disorder so that cut my pain meds off . So I said so it’s being a crazy basket case or hurting I have to choose between. The answer was the FDA don’t care . You see on the news alot were animal owner aren’t caring for their pets & go to jail or prison even but they can tell a human being I’m sorry your hurting but that’s how it is . My Bp is usually always dangerously high because of my pain . My quality of life is little to none . I can’t partake in activities with my kids & grandkids . I simple exist . As for tears I have no more it’s placed with disappointment that the USA would allow us to go on & suffer they way I do daily . I have no say so In my health care . I hope that these people setting their desk & have no clue how I feel everyday will search their hearts . I feel we are being punished because of the notoriety of the death of several famous people due to pain meds but don’t punish us punish their Drs . I have so much documentation on my injuries & the pain causes me on a daily basis but it doesn’t matter !!! What a world we live in .
I am a 62 year old female with chronic pain for 15 years. I have done everything from Chiropractor, exercise, pt heat,ice, massage and even pain patches. All of this takes strength, energy and the ability to move your body. Not to mention money. A simple dose of pain medication three times a day get me thru some very painful times. I can live my life proactively. I don’t mind going through all the hell to get this prescription if it helps get the Illegal Drugs off the streets. But what I do mind is that heron addictive people get more attention and help, like free methadone, free medical care, clean needles. They break the law and get help. Opioid pain medication for chronic pain is not the problem in this country, but take it away from us and you will have a problem. We will be forced to find the medication illegally along with the real drug abusers. Sad day in America.
I was diagnosed with Fibromyalgia in 1999 and after 3 yrs of misery trying to find something that helped and didn’t affect my depression and anxiety,my doctor put me on 25 transdermal Fentanyl.After 17 yrs of being stable on my med,the dose was decreased to 12. I also have Degenerative Disc Disease and Diabetes Neuropathy.So far I have had no success in getting my med raised.I am existing on Aleve and Ketorolac which can affect my Proteinuria and damage my kidneys,and Flexeril which depresses me to the point of suicidal iterations.I was active in my church,my quilt guild ,kept my house,went to the gym,and drove to visit my mother 9 hrs away.Now I am housebound and my day consist of finding ways to try to escape the pain.I have no quality of life.
Im 64, disabled since 04, numerous conditions , trigeminal neuralgia, intractable pain, polyneuropathy,2 kinds arthritis , to name a few, which btw from 1998 until 2014, was treated with both compassion and opioids, higher dose above 500mmme a day. With the amount of meds until 2004 was able to enjoy a vacation, travel to see family in other states, take care of my household duties , able to drive long distances to visit family. Now since 2016,, after being just cost off rx meds, cancer, heart problems, chronic kidney disease from nsaids, live a third of my former activities. My outtings consist of mostly dr visits , no more vacations, travel to family, my house is unclean, but, do the best i can. My life now is an existance, albiet it lonely . On bad days, im inside alone, crying from the pain, wishing i could cut my legs off and be done with that pain . But, im better off than most, after being cut off of my meds which allowed me more freedom to just have a life , i fought to re build my records to prove my pain, thinking, im doing things right way, they have to see that my pain legitimate , right? No. BUT , after seeing the third pain dr, she aggreed to give a minimun of help, but, not without doing things like contracts , urine tests, etc. Started out with 2 pills a day, i was ecstatic just to have a modicam of relief. But, sadly , as im aging, problems are accelerating, so, those 2 pills are not enough. So, knowing that in todays climate , id be taking a chance of losing the little i had , by asking for just one more a day, she did, but was stern thats all id be getting, dont ever ask again. This leaves me to be in pain , but, at least now have few hours of small breaks, relief, so, plan each day accordingly, meds and pain level. I question the rules made by the cdc , not fda. Drs fears are real, and wont dare give relief , sad to say, until things change and cpp’s are treated as individuals in agony should be. Being almost 65, healt deteriorating, dont expect , with my now increasing med problems, to be here in 5 years. If i had appropriate dosing, who knows, bp might improve, but, certainly would be able to enjoy the few years left to me. I exist now, would love to be a real participant in my family, and Live.
I have been living with chronic pain since February, 2002 after my first ever chiropractic adjustment had went horribly wrong. As if displacing my spinal cord wasn’t bad enough, I went in for major surgery in November, 2002. I was told that this was necessary, or I was at risk for paralysis from the chest down, since my injury was at the thoracic level. After waking up from a very long surgery, I was in some of the absolute worst pain I had felt, but it didn’t stop there. You see, they didn’t do the surgery that they claimed to do, or what the surgical report states because my films show the exact opposite! In fact, no one knows what they had actually done during that surgery, but one thing is for certain, they absolutely destroyed my back, to the point that it can no longer be corrected, without a 99% chance of paralysis before surgery is every completed! I was 30 years old when this happened, and as if no longer being able to lay, sit, stand, sleep or barely walk wasn’t bad enough, I was forced to go on permanent disability. I also had two very young children when this happened, so needless to say, mama was at home in pain, instead of being able to live life and enjoy their youth with them. I could no longer cope with the pain of trying to sleep, sit, walk or simply exist, so I had to reach out for help! That took a lot for me, because I have always had the ‘I can do it, I’m fine, I don’t need any help” outlook on everything, but this definitely opened my eyes to a totally different world. Once I started pain management, I finally felt some pain relief and was able to actually get up and start to be able to do little things with my daughters again, which meant the world to me! Like they say “you don’t know what you’ve got, until it’s gone”, and it rang true in every sense of the expression! I have tried every other option there is for pain management, (besides pain medications) but they all very much failed. Without the help of my pain management doctor, I would have absolutely NO quality of life! I am still going to pain management to this day, because it’s became a part of my life. I have to rely on this method, in order to be able to have somewhat of a life without excruciating pain. Since this injury, I now also has herniated discs at every level,, spinal stenosis, spondylosis, degenerative discs, bone spurs, arthritis in my spine, nerve damage and fibromyalgia. These are things on top of having a disc pushing up against and moving the spinal cord, so as you can see, I do have significant damages, as well as reasons for needing pain management. However, I have also been very fortunate to have the most amazing pain management doctor right beside me! My doctor is very knowledgeable on pain treatment and has worked out a regimen for my specific needs, but without my doctor being able to treat me and my pain, I fear what that could bring. I have dealt with the depression from a lack of being able to live a normal physical life, but the depression from chronic nonstop pain and hopelessness topped it all! My doctor has shown me that my life actually is worth something, and I don’t have to be in severe pain, regardless that I was just dismissed and thrown to the side by the two people responsible for my injury, who are in fact also in the medical field! Those living with chronic pain shouldn’t be made to feel like their desire to live a full life doesn’t matter, or that their life isn’t equal to those without needing pain management. We shouldn’t be made to feel like we’re a drug addict or doing something wrong either. The fact of the matter is, without my doctors specific treatment for my injury, I will have no quality of life at all anymore. I tried to go without medication in the first several months of my injury, and I had no quality of life then. I just can’t fathom the thought of having such an amazing doctor that’s helped me for several years, and has been able to help obtain relief from my severe pain, just to suddenly stop and have taken away from me! It should be viewed as unethical, and goes against everything that pain management doctors study and train for. Those living with chronic pain should be equally entitled to receive appropriate medical treatment for their medical needs, just as those who are entitled to receive care for diabetes, cancer, high blood pressure, heart disease, in need of oxygen, etc etc. Please, I beg you to stop and think what this will do by taking away pain management for those in need, because it’s not only unjust, it’s also cruel and inhumane! I am taking a stand in defending my doctor to be able to treat my unique injury and pain relief needs, (as well as everyone else’s) as well as a stand for myself to be able to live a semi functional life and receive the appropriate medical care necessary. This so called “epidemic” isn’t even an epidemic, it’s called medical treatment for many people! I think the government has confused pain management with the homemade Fentanyl pills being brought into our country, which is causing a high rate of overdose, but that’s far different than pain management! Pain management is just that, managing chronic pain. By cutting people off of their medications, all it’s going to do is cause people to seek their own pain relief on the streets from other substances, such as heroine, or they’re going to end up committing suicide because they can’t get any help with pain relief! Chronic pain isn’t an epidemic, and neither is the legit treatment for chronic pain! I can guarantee that if someone trying to have pain medication taken away had to live with chronic pain day in and day out like the rest of us do, they would understand that this is a very big issue. You’re essentially telling us that our life and quality of life doesn’t matter, and we can just suffer, bottom line! Whatever happen to the oath, and “do no harm”!? If you’re going to get technical about it and say that pain medication causes harm, so does MANY other medications for many other illnesses, but I don’t see anyone trying to lobby against those medications. In fact, drain cleaner, bleach, antifreeze, gasoline, etc etc etc is also deadly if consumed, but who is trying to stop the production or sales for any of those things? Call it petty, but that’s a very valid point!
I will define the numbers in the numeric system of rating pain at the end of this missive so we are all on the same page as to the meanings.
The only thing that stops me from ending my life due to my suffering at my current, constant pain level of 8, is what it would do to my family. At an 8, what they would suffer trumps my suffering. I will continue to suffer to save them emotional pain. But this is the most I can take. If I lose any more of my pain relief- I’ve already been forcibly stepped down- I will no longer be able to cope with the pain. It is so hard now! I have done research on the quickest, most successful way to commit suicide. If my pain goes up at a constant level I will kill myself. I have made my family aware of this. I don’t want to die, but I just can’t cope with more pain!
I have two rare diseases, both of which cause chronic pain. I am bedridden due to having my opioid medications stepped down from a dose that worked, after the prior to this round of federal “guidelines.” Before the step down I was at a daily pain level of around five. At a five I was limited, but was still able to socialize a bit with friends, occasionally do laundry, cook, vacuum, grocery shop, do light cleaning and run errands.
My daily pain, *with* medication, is now a constant 8. It never stops. That means I no longer can drive as my pain is too distracting. I have trouble falling asleep and the pain wakes me in four to five hours. I do not get my own pills as the pain stops me from forming memories and I can’t remember if I have or haven’t taken them. I can’t pay the bills for the same reason. I can’t cook, clean or do laundry. All of the household chores and responsibilities have fallen solely on my husband. (I thank God for him and his love!) I can’t go grocery shopping and must do all purchases online or via my husband. He also has to wash my hair as reaching above my shoulders is intensely painful. I lose track of conversations in the middle of them because pain is the dominant thing on my mind. I can’t have someone talk to me while the tv or radio is on as I lose track of the conversation. I have trouble focusing on reading or watching television and often have to read/watch something several times. My main hobbies were reading, crocheting, breeding fish and beading and I can no longer do any but read. I used to walk in sand for an hour, four days a week, but now am unable to exercise due to the pain. I leave the house less than five times a year. Those are generally medical visits. I sometimes can’t walk to the bathroom by myself. There have been times that my husband has had to lift me off of the toilet. I have not been able to go to a friends house since mid 2014. Because my home is not company-worthy (my husband is so overworked!) I no longer have people over. My social contact is phone, texts and email. My husband has to do everything, which is hard on both of us. Anyone who thinks we have chosen this life needs to think again. And no, I am not on public assistance. My husband and I struggle through on our own!
The inability to be productive or work has damaged my sense of self worth. I come from a family that believes in pulling your own weight! I really miss working and get jealous of my husband when he leaves in the morning. While I was unable to work prior to them taking away some of my pain relief, many on it are still working and supporting their families. Losing adequate pain relief will cause many to no longer be able to work. That impacts everyone as they join those on public assistance.
I also live with the knowledge that a study by Northwestern University has shown that Chronic Pain damages The Brain! That concerns me greatly!
The worst thing I have ever done in the “breaking the law” area is speeding. (I paid my fine without complaint.) Yet the lives of people who illegally obtain and use opioids are counted as being more important than my life! I am sorry for the friends and family of addicts, and even for the addicts themselves, but I HAVE DONE NOTHING WRONG! I have two documented diagnoses and I am under a doctor’s treatment. I have a medical need! Why must those with an actual medical need suffer to keep those engaged in illegal pursuits safe?
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Pain Level 1
Very Mild
Very light barely noticeable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.
Pain Level 2
Discomforting
Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. People can react differently to this self-test.
Pain Level 3
Tolerable
Very noticeable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the time you don’t notice the pain, as you have adapted to it.
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Moderate Pain Levels
Moderate pain levels interfere with many daily activities. These pain levels usually require some lifestyle changes but you can remain independent, however, you are unable to adapt to the pain.
Pain Level 4
Distressing
Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the simulated pain is initially piercing but becomes dull after that.
Pain Level 5
Very Distressing
Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that you normal lifestyle is curtailed. Temporary personality disorders are frequent.
Pain Level 6
Intense Pain
Strong, deep, piercing pain so strong it seems to partially dominate your senses; causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings, or a bad back pain
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Severe Pain Levels
Severe pain levels mean you are no longer able to engage in your normal activities. The patient is considered disabled and unable to function independently.
Pain Level 7
Very Intense Pain
Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.
Pain Level 8
Horrible Pain
Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a bad migraine headache.
Pain Level 9
Excruciating
Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn’t work, suicide is frequent as the pain is unbearable. Comparable to throat cancer.
Pain Level 10
Unimaginable Pain
Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10.
I used to be the type of person who would say that I’m not taking this or that and that I’m just fine. Around 2008 I started having very painful bladder spasms and pain. My PCP told me he thought it was interstitial cystitis but needed to send me to a urologist. After seeing the specialist I was like well ok how do we fix this?. He says no cure but other things like diet , physical therapy, groups or medical treatments could help some. However the pain is great with me and as I’ve learned from others in support groups that everyone is different. I tried to keep working and was falling behind. I cut hours and was still not handling it well. 60% of ICers are unable to work. So I was able to go on disability after working 17 years. One thing was a constant,,, the pain. Imagine having an open wound and having it sliced with razors and pouring battery acid on it. Well that is how it feels on my inside with my bladder. I look fine on the outside but my inside is wrecking havoc. I do NOT abuse my meds. There are some days are better than others that I can manage but then there are other times i need them to do even the simplist of things like take a shower, do some laundry or cook for my family. If i was denied those medications to help me and had a day where i can’t move from the bed and cry in pain and contemplate suicide bc the pain is too great and I’m not going to go to the street for drugs. I’m not that type of person. My dr knows me, my family knows me. The government or people trying to change these laws for my dr yo help me they are the ones who dont know me. So I am at mercy to please allow me to take my meds that my dr put me on so I can function and be a somewhat normal human being. Also the pain of IC has been compared to that of a person with cancer. I understand the concern for the crisis of the epidemic but dont make chronic pain patients suffer to the point they take their lives. I’ve already seen that too many times in the support groups I’m I’m on Facebook. So Congress of you take these meds away from people with chronic pain and people kill themselves then I have one thing to say to you…. their blood is on your hands and I hope you can rest easy knowing that and God forbid you ever have chronic pain. I will pray for you.
I live with chronic back pain. It began 2012 I was working my dream job with one of the biggest companies in the world then my back began to hurt and stiffen I kept working taking it easy on the weekend thinking that may help. It doesn’t so I continued to work had all my life and didn’t know what else to do my back failed the last day I worked I had to get my coworker to drive me to my car so I could get home. I couldn’t hardly walk come Monday so I went to my primary physician and tried chiropractic care to no avail I had surgery to trim the bulging discs it didn’t work for long I was back in so much pain I could hardly walk again so I had fusion surgery it went bad really bad they sent me home and I had a spinal fluid leak back to the hospital at 3:00 in the morning. The surgeon tried 2 radiological interventions they didn’t work so I had an additional spinal surgery for a total of 16 days and four procedures. Today I went to see my pain management doctor she said that the government may force her to lower my medication, I don’t know how I will make it through the day. I follow every rule to the letter why does the government want to take away my only relief.
In 1987 I was living in Portland, Oregon. While in a domestic violence situation, I knew my only chance of surviving against a butcher knife in the hands of my intoxicated attacker, was to exit through the bedroom window. However, I lived in a second floor apartment. So I jumped. Some how I landed on my bottom, which fractured a vertebra and a bruised kidney. I’m lucky I could crawl away and hide. I’m lucky I wasn’t paralyzed. 12 weeks later I was able to get in and out of bed, tie my shoes, get dressed and return to work.
Fast forward 21 years later and I am in chronic pain and I have been taking OxyContin and Percocet. Did I mention a total knee replacement that restricts my activity because of the pain? Yeah that too.
Three weeks ago the doctor who has been treating me for the last 5 years suddenly and with out cause has implemented the new Oregon taper off recommendation in my situation. I was in disbelief and I didn’t know what was causing him to do this. I’m sure most people think I was abusing my medication because why else would he do it. I’m considered low risk especially since I come in every 3 months, pass all ua’s and eventually went to blood work to make sure I was taking as prescribed. I have been 100 percent compliant because I knew what the consequences would be if I didn’t. And I have tapered to below the 90
Mm per day. In 6 weeks I will have nothing to treat my chronic pain. I’m terrified. I am 59 years old and I know how much of a struggle I had before seeking treatment with a pain management doctor who by the way has never even put his hands on me or provided anything else but opioids to treat me. He also disagrees with my diagnosis because he said it was an interpretation of the imaging by the doctor who was treating me at the time as well as the radiology report. I guess he thinks he smarter than everyone else. He said even at the dosage I’m on and the duration I’ve been taking it I’m at risk for respiratory failure.
I don’t know what to do. I
we’re working with providers to avoid this same story from repeating itself. I’m so sorry for your troubles. Please know we are doing everything to find a solution.
I have been in pain management since the late 90s. After a lot of trial and error and many steroid and epidurals blocks you name it , I was finally on a dose of morphine I could have a quality of life with until I changed doc to try the RFA or nerve burns. At first my new doc left me on same dose I had been on for years then suddenly cut it in half ! I have felt plum unnecessary ever since , I’m getting anothe RFA the 12 of sept and will try again to get them to just put me back on the dose they had me on when I walked in their door , as for now no quality of life and I’m going downhill fast , don’t feel like doing any of the things I used to and carry that hurting throb in my lower back
I have a neck fusion done and 2 back fusions done I have herniated disks and bulging dicks I can’t work bend strech or walk a long period of time I have Sciatica nerve problems that go down my legs and to my legs my feet and also It also travels up around my hips and my back I can’t sit in the car a long length of time I have pain in my feet like burning 10 stations in my legs light th I have pain in my feet like burning sensations in my legs like they’re on fire I cannot Lift my arms up above my shoulders because of a doctor not doing the surgery right I also have restless leg syndrome I suffer from migraines so the fun part is I want to my doctor today to get a refill on my medication and he completely stopped everybody including me off our medication There was a 89-year-old woman saying the the doctors crying saying he Cut me off my medication didn’t even wean Me down just completely stopped in writing our medication so I don’t know what I’m I post to do nobody taking patients me down just completely stopped writing our medication I’m in severe pain I never fail a drug test always on time for my appointment he walk in and said I’m not writing script for pain anymore and walk out.
So I go into my doctors office today to get my monthly refill Doctor says I’m not writing it no more and and he’s a pain management doctor I’ve been seeing for six years seven years Didn’t even give anybody my medication to help wean them self off or give them something else temporarily like Suboxone or whatever so they won’t feel sick or something I’ve called every pain management doctors offices are overbooked not taking new patients everybody his practice was going to him for pain medication was also cut off medication I’ve been seeing him for six years I’ve never had a bad piss test every single month and pain pill counting I have a rod in my neck in a chain that look like a chain from my MRI down my back that looks like a motorcycle chain I can’t bend I can’t lift heavy stuff I’m constantly in pain my legs always feel like they’re on fire and burned so bad nothing can’t touch it and I also suffer from sciatica with problems my legs in my lower back and I also have arthritis degenerative disc disease bulging disc herniated disc and my doctor walks in the room and says I’m sorry we’re no longer writing pain medication no more if you don’t like it find another doctor people in the waiting room or Crying they didn’t know what to do everybody office is booked because it is happening long story short I do not have any medication he should’ve weaned us down and then it would be better and give us time to find a new doctor instead of just stop been sick all day I can’t lay down I can’t stand I can’t walk everything hurts on me I just don’t know what to do I saw 89-year-old woman in waiting room in a wheelchair at the office crying her eyes out and she said He took everything from me what am I going to do I’m not living my life in pain I’ll probably be dead by tomorrow her I didn’t know what to say this prick of a so called pain management doctor just opens the door of the room and says I’m not writing no more pain scripts I bet if it was his grandparents,self our wife and kids he’ll help them please publish his name so everyone knows how he did us but they was gladly to take our copays..,,,,, Hitch wasn’t returned,His name is RALPH CARBONE JR in south bend Indiana on Edison street please get this out
my best to control her and have her look around for doctors office but she has sister that she’s tired of it and she wanted things to be done I’m afraid she’s going to come at suicide why live this long to commit suicide why because the doctors take the pain control away from people who need it and nobody wants to be in pain 24 hours seven days a week
My son age 39 has suffered from chronic pancreatitis for 12 years. He has intractable pain. In order to be a productive member of society, to be able to work, to attend church, to take care of his family he needs pain medication. His medication is under the supervision of a physician. He only uses one drug store and one doctor. Chronic pain patients do not use opiates to get “a high” they must have them so they can have a life, he follows the rules. Legislators should not get between doctors and their patients. The deaths from opiates are caused by illegal use and by street drugs.
My pain story starts on a rainy day in August of 2003. I was leaving a special needs preschool carrying my client when I slipped and fell on a wet wheelchair ramp. This fall put me into the workers compensation system. This system is set up where you have to prove you are injured. Even when xrays, CT scans, and MRIs show that there is something wrong. I waited almost a year and a half before begging for surgery. I had tried physical therapy, chiropractic care, and acupuncture, and steroidal epidural injections. Nothing worked to help my pain except opioid pain medications. As I was only in my 30’s I didn’t want to have to spend the rest of my life on these medicines, especially due to the stigma that is put onto a person needing these medicines in order to live. I was already at that time dealing with the beginning of my journey with fibromyalgia, and had received trigger point injections, and Botox injections for thoracic outlet syndrome in my upper right chest and shoulder.
In early 2005 I underwent my first back surgery. I had a 2 level spinal fusion with intervertebral spacers. It was supposed to have been a one level fusion, My CTs, and MRIs before hand had only ever been done to show damage in my llumbar spine, When my surgeon opened me up he found not only a fractured L5 but also my first sacral vertebrae was fractured. Along with herniated discs at the L4L5 space and the L5S1 space. This then increased my surgery time from 6 hours to 13. I then spent almost 7 days in the hospital recovering because the nursing staff became overly concerned about the amount of pain medication that I needed to recover safely from this surgery. I was also on Cymbalta at that time to treat my depression from not being able to work, and from living in pain. It was not well understood that the patient can not just stop an SSRI abruptly, that they must be weaned off of it just like many other medications. Since it was a new, and expensive medication at that time, the hospital I was at did not stock it. My husband ended up bringing in my medication from home for me to use.
For 6 months after the surgery I wore a bone growth device to help cement my fusion. Unfortunately it did not work exactly as planned. I did do physical therapy after my initial 6 weeks of healing. I was able to wean down off of almost all opioid medications and muscle relaxers over the 6 months. I did still require the use of Tramadol ER twice a day. I was diagnosed with failed back syndrome. Even though I wasn’t completely out of pain, I was able to function. I continued with chiropractic therapy, massage therapy, and yoga, and light weight lifting. At 9 months post op I returned to my career as a Licensed Practical Nurse.
Four years back into working I had an accident at work that pulled the intervertebral spacers out of alignment in my back, and they now sit on the spinal nerves at L4L5 and L5S1. This creates constant intense burning pain in my lower backs and buttocks. My original fall in 2003 had done some damage to my SI joints. This next accident caused further damage to my right SI joint, I again underwent back surgery for a revision of my fusion. The instrumentation on my right side was removed, and some overgrowth of bone was filed off in different areas in my low back. Unfortunately this surgery did nothing to alleviate my pain.
Because of this nerve compression I not only suffer with constant unremitting burning nerve pain in my lower back, and bilateral sciatica pain. I have intense muscle spasms and muscular pain in my low back and buttocks. My fusion is no longer stable, as well as my SI joints, so every now and then my spine will shift and I get bone grinding pain that is incredibly intense. This pain will drop me to the floor at times. There is no cure or surgical fix for this.
I have undergone numerous steroidal epidural injections, radiofrequency ablation, and nerve blocks in attempts to alleviate some of my pain, Sometimes they help, more often they do not, Due to the large number of injections I have had into my spinal cord, I have grown scar tissue in those areas. This itself has caused increased nerve pain and muscle spasm. I have also developed facet joint disease in my thoracic and lumbar spine.
In 2011 I underwent a triple laminectomy to my thoracic spine for the placement of a paddle lead for a spinal cord stimulator. This stimulator was supposed to help decrease my lower back pain and sciatica pain. It only helped my sciatica. That was helpful in some ways, but has still left me reliant on opioid pain medication in order to just get out of bed.
In the intervening years my thoracic outlet syndrome worsened. I again underwent physical therapy, and injections in an attempt to stave off surgery. These attempts did not work. Even though surgery for thoracic outlet decompression did give me some relief, I still require trigger point injections, and Botox injections to help keep that pain managed.
My fibromyalgia has progressed over the years. This makes me feel like I have the flu on an almost daily basis. It can affect my memory and recall ability at times. It has also caused a secondary condition called costochondritis, an extremely painful inflammation of the ribcage. This condition has not only caused pain, but can sometimes feel like I can’t get a full breathe. I have undergone nerve blocks and injections into my sternum in an attempt to alleviate those feelings. I have recently started using hemp CBD oil to treat my fibromyalgia with some success. I only wish that it had been available to me sooner.
In April 2017 I had the battery component of my spinal cord stimulator surgically changed out, as my first battery was failing. This new technology still only gives me relief of my sciatic pain. Unfortunately the new technology is also now affecting my nervous system negatively. It has a wireless connection to the remote that I use to change settings. I react negatively to this signal. It did take almost a year for the signal to build up in my nervous system before I felt the adverse reactions that I do. In that time I had undergone another surgery to add another stimulator to help manage my low back pain. This stimulator provides stimulation to muscles peripheral to my spine by percutaneous leads implanted deep into my muscles. Adding this stimulator did allow for a minor decrease in my long acting pain medication, and my short acting breakthrough medication. Unfortunately adding another wireless signal to my nervous system has added more adverse effects. I get horribly painful headaches, I feel pounding constantly in my cheekbones and jaw. My arms become heavy, and difficult to lift. And they will occasionally flap unexpectedly. Because of these adverse effects I have to be judicious in my usage of my stimulators, as no manufacturer makes a wired system still at this time.
This has required me to increase my usage of my breakthrough opioid pain medication again.
I am on what is considered a high dosage of long acting pain medication. My dosage is at 240 MME. I can not see me living any type of quality of life if I was made to decrease to the 90MME that is being recommended as the only safe high dosage. I have needed a high dosage of medication since 2009. I have needed increasingly higher dosages as my condition progresses.
I have tried aquatic therapy, mindfulness, acupuncture, massage, and physical therapy. None of these have given me even short term relief of my pain.
My pain management doctor and I discussed the CDC guidelines before they were officially put out. He didn’t feel that they would impact his ability to care for his patients, as they were only supposed to impact primary care physicians prescribing. And there was no recommendation of lowering dosages at that time either. Now he is afraid for his practice. He is upset that he can’t provide the care that he trained for.
I started in the medical field back in the late 80’s. I saw our elderly suffer in pain every day because we didn’t treat their pain. I saw cancer patients suffer needlessly the last days of their lives because of the stigma, and fear of addiction from medical professionals. Then I got to see the tide turn to compassion, and dignity for the dying. My greatest fear is that this compassion is and will be lost unless something is done to stop the hysteria and negative stereotyping that was being removed from the healthcare setting.
Thank you for reading my story.
Hello my name is Beverly and I had failed ulner nerve surgery and when I woke up I knew something was wrong !!! The nurse kept telling me to be quiet!! It was a cold snowey day and only 3 patients showed up for surgery. As soon as they got us out of there they got to go home! So we lived 3 hours away… I called several times during the net three weeks saying something is wrong. They just kept saying the cast is probably to tight and to wiggle my fingers and I told them I couldn’t!!! So when I finally got the cast off the Dr did a special bone scan and told me that unfortunately I had rsd!! I said what is that and how long before it goes away!? She handed me a stack of papers and sent us on our way!! By the time I got home I was a puddle in the floorboard thinking I had just been given a death sentence!!!! This monster started in my left elbow/arm/hand 9 years ago and has since spread to my left leg and foot!! My right foot, my left and right hips, my right hand/arm/elbow ( I had the same surgery on the right side) I actually had it first!! My eyesight is horrible. I can barely read! I am not allowed to drive anymore, I spent most of my time in bed because I fall so much that I can’t afford another hit to the head!!! I desperately need a service dog ( a big one) to walk beside me a alert me that I am fixing to start my shaking and fall! It resembles Parkinson’s! The shaking can last for hours or days with no rhyme or reason!! My legs give out from beneath me and are on fire and all I can do is cry!! If these struggles aren’t enough…. and I just skimmed over them, know my general doctor refuses to give me my pain medicine that he has given me for 9 years!! I get nothing but grief from them!! They treat me like a druggie!! They look so condescending at me!! Run me through the mill about refills!! I finally have an appointment with yet another pain mgt. group this month! I’m not holding out much hope that way I won’t be dissapointed!! I have had every test known to man ran on me!! Cried from all the pain they put me through been bed bound for days after from the effort it took to go through it all!! And now the govt. wants to take away what little relief I do get!! With pain meds I live my life at a 5-6 on the pain scale. Without their is no limit!!! I know why they call this the suicide disease!! People just can’t take the never ending pain anymore!!
IM Hurting so bad I’m lying in bed .the pain I’m in makes it impossible for me do anything. I can’t take care of my self anymore .to live in this pain is inhumane.I cry pray to God to please help me .I’m SUFFERING TERRIBLY without the proper pain medication I can not live in this pain. I would rather be dead . I was in a bad accident in 2003 three bleeds in my brain fractured back neck and broken collar bone that never healed right .I was paralyzed on my left side .I’m able to walk with hard work .my left side is slow .With the pain medication I was able to clean shop drive help my children play with my beautiful grandchildren I had a life .I was even able to ride my horse which was therapy for me help me physically and mentally witch I can’t do because of disabling pain .2006 I had bad epidural injection in my neck with a bad Drug depro medrol that causes arachnoitis no cure and pain as bad as cancer pain 2007 horrible pain stimulater surgery that was place in my skull . it was to be put in my upper back the pain stimulater went up by its self causing me to be put on blood pressure meds until it was removed .I had it removed 3 months later .I got home I couldn’t think had new and worse pain in my feet legs and butt panic attacks .The medication I’m on now does not touch my pain to be able to take care of my self I need the pain medication to have a life .please help me 😭😥😰😢
I have tried everything to get out of pain .laser surgery stem cell therapy pain stimulater surgery acupuncture chiropractor physical therapy massage medications suppulments vitamins bought exercise equipment that was painful to use meditations tapes therapy couseling pain classes epidural injections and other injections. creams and so much more I can’t remember right now
I have brain injury spinal cord injury pinched nerve in my neck and in my back bulging disks fibromyalgia Lyme disease CHRONIC pain syndrome stenosis arthritis degenerative joint disease hyperrflexia spondylosis of cervical. EVEN WITH ALL MY PROBLEMS WITH THE PROPER PAIN MEDICATION I WAS ABLE TO HAVE A LIVE TAKE CARE OF MY SELF DRIVE CLEAN PLAY WITH MY GRANDCHILDREN I WOULD FEEL LIKE A TON. OF WEIGHT WAS REMOVED OFF ME. The medication was made for these problems and it works It has helped and changed so my peoples lives for the better can you imagine living in unbearable pain 24-7 for years I don’t think you’d have a clue unless you have it .I would of never believed it ..UNTIL IT HAPPENED TO ME .SO PLEASE HELP ALL US WHO ARE SUFFERING AND THERE MEDICATION TO HELP WITH CHRONIC PAIN JUST LIKE FOR HEART PROBLEMS DIABETES KIDNEYS LUNGS LIVER AND MORE THAT ARE NOT BEING TAKEN OFF THEIR MEDICATIONS AND MADE TO SUFFER .YOU PROBABLY KNOW SOMEONE WHO DEPEND ON THESE MEDICATIONS TO LIVE
SO PLEASE HELP ME AND OTHERS IT BREAKS MY HEART TO SEE PEOPLE IN PAIN AND MYSELF 😭😞😰😣😢😪😱😵😭
I am 61 year old female with chronic pain and a multitude of other symptoms and diagnoses. This is my 30th year of living in pain. My Doctor is very upset with the latest rulings from the FDA. He told me that I should write letters to all concerned. He said his hands are tied and he would have to abide by the new laws and dose down all of his patients. This has been, for the past 8 days, the worst part of living life. I am angry with outside entities tying my Doctor’s hands with concern to my medication. I have written the letters and will be sending them to the FDA, my congressmen and women, the President and any other person who will listen. We need to be heard. This new law will not stop opioid overdoses especially for responsible chronic pain management patients. It will not stop the drug dealers or the countries shipping illicit drugs to the United States.
People who are responsible for their medications are not the problem. This is what the real issue is. Let’s all get involved to see that we do not cripple the chronic pain sufferers.
Thank you for your time and God bless the USA.
Fifteen years ago I was a happy, newly married, registered nurse with a great job, great husband, new grandbabies, fun filled, adventurous life. That was until I was diagnosed with rheumatoid arthritis. I had been having continually worsening pain in my hands, elbows, and knees to go along with my degenerative disc disease and multiple back injuries. I ignored the pain for about two years until I realized I was having trouble opening meds, spiking IV bags, and as I worked in cardiac surgery, trouble holding pressure on arterial sites after cardiac caths. I also was having difficulty with chest compressions during codes, and in general with positioning and assisting my patients. I had noticed my painful joints for a long time but when it started interfering with my patient’s safety I had to see my doctor. I was immediately referred to a rheumatologist even before the bloodwork came back. I was started on meds and my hope was that with medication, diet changes, exercise, and a little luck, I could continue to work for many more years. Unfortunately it didn’t work that way. My RA progressed quickly and my Dr had little to no luck at putting my disease into remission. Within two years they had added fibromyalgia to the list, followed by peripheral neuropathy, osteoarthritis and increasingly worse, and more painful, back issues. Within two years I had to quit working due to the level of pain, the stubbornness of my illness, and the fact that I simply could no longer do the job. I’ve spent the next 13 years with continuous medication changes, and ever increasing pain. I’m now to the point where I am rarely able to leave my home. The loneliness and isolation and 24/7/365 pain is sometimes almost more than I can take. The politics of the opiate debate is infuriating and terrifying to people like me. It’s a vicious cycle as autoimmune illnesses are made worse when stress and fear are in place and they want to take away the one thing that can ease the pain and let us have a chance to be a little more “normal”….. at least as normal as is possible. If they think that people like me haven’t tried other methods of easing the pain, they are very wrong!! In the course of any given day I use heat, cold, exercise, rest, diversion, and many more ways to just get thru the day or sometimes to just get thru the next 5 minutes. Shall we talk about sleep? Let’s just say that most of us don’t even know what a full night’s sleep even feels like anymore. There are nights where my husband gets up to get ready for work and finds me pacing the living room floor because I can’t find a way to ease the pain. Oh yeah, I forgot to mention, remember how I said I was a newlywed when I was diagnosed 15 years ago? I have had to sleep in a recliner for the last ten years because I can’t sleep on my back due to all the back injuries, and I can’t lay on either side because the pressure on my hips is too painful to allow me to sleep. I haven’t slept with my husband for ten years due to the pain, and you can take that statement literally and figuratively. Chronic illness finds ways to rob us of a normal life in so many ways and most often pain is at the center of all of it. The pain from both the RA and the fibro makes it almost impossible to give or receive a handshake, or a hug. I have grandchildren that I have never been able to pick up or to hold because they live several states away and by the time I get to be with them they are too heavy for me. I have one grandbaby that I haven’t even met yet because traveling is extremely difficult . I’m watching them all grow up in pictures and videos because the pain keeps me from traveling most of the time. I belong to several online RA, fibro, and chronic illness /chronic pain support groups and most of us are terrified that the politics of the opiate issue is going to result in the complete blocking of the medications that are all that allow some of us to be able to do things as simple as our own daily care. Opiates are not going to give us back the missing hugs, adventures, dances, careers, etc in our lives. They simply allow us to shower, dress, maybe make a meal, maybe go to the store, maybe get a hug from a grandchild or child or spouse. Nobody is looking to get high, they are looking for a little bit of normalcy in their lives. For me it is a fight to maintain the little bit of independence I have left. For those of us who jump thru all the hoops to get our medications, it’s time to leave us alone and concentrate on finding ways of solving the drug problems in this country that don’t include victimizing those who have chronic illnesses or injuries who fight every day to just get thru the day.
September 8, 2018
No point in complaining, you won’t listen. Why should you care. It’s not your pain, but here goes…
I am now 65. My pain issues started 20 years ago during the best times of my life.
I have taken care to see my children grow into adulthood. I’m now a grandmother of Five.
The only way for me to deal Day and night is through the use of opioid therapy.
For every month for twenty years I have seen my pain management doctor
I’ve been subjected to approximately 80 urine screens I never failed one.
Do you see your doctor every 4 weeks to renew your medications? Do you pee in a cup to determine if your medications are found in your urine and no other drug not listed on a form? Do you know anyone who is prescribed a medication to help them is put through this?
Now I’m faced with the very real possibility that I could loose the medications that were fine tuned to meet my pain issues. I have already been reduced or eliminated medications in the last year to fit into guidelines.
These guidelines are like gospel truth. Not laws. Yet I am made to be punished like a criminal because I am depended on these medications to control my intractable pain
I know the drug crisis is real, but cutting medications to chronically ill people is not the answer to the problems facing our nation
The illicit drugs pouring into our country is the real issue.
Because you can’t fix that, blame grandma who needs her pain pills to help her care for her grandchildren. The stats will look better, but ask yourselves in a year, why are people still dying?
Why are chronically ill people being punished for the drug crisis plaguing our nation?
We are not the problem. Take away our medications, take our dignity, you can’t break us. We are the strongest people you will ever meet.
We’ve been fighting most of our lives.
Take away the medications of the chronically ill, People will still die from illicit drugs.
In March 2018, I suffered a severe disc protrusion in my lower back. The pain was agonizing and debilitating. I’m in my sixties and have had my share of painful experiences but nothing prepared me for this episode. My wife and I went to a local emergency after hours facility and they prescribed a muscle relaxer and steroid pak. I took a muscle relaxer and fell asleep only to wake up 2 hours later in excruciating pain. Threw those out. The steroid pak worked after three days. They told me that they don’t prescribe pain killers for back issues. Three days and nights of no sleep and agony. Guess they feel that that builds character. Not sure how or why. Maybe they thought that I would abuse the narcotic? Maybe they thought that I was the reason for the supposed nationwide crisis? Or maybe they thought I was a professional athlete. I filed a complaint with the NC Medical Board….waste of time! My concern is that folks who experience this pain level, will be punished for the abuse of a few. Let me know if you need additional details as I will provide names, dates, and places. Good Luck for all of us!
When I was in my early thirties with 2 small children my husband dead from asthma and pneumonia and a mother dying from cancer I was exposed to hazardous chemicals on my job due to the company I was working for being allowed to squeeze every pennies worth of use out of malfunctioning equipment and the state government being run by the same kind of nasty people who are making sure that the doctors are afraid of treating their patients! In any case I developed a rare autoimmune diseases and then fibromyalgia and then another autoimmune disease that is destroying the skin in my vaginal area. I also have back injury at every level of my spine which I’ve been told by multiple surgeons is inoperable. Or to put it in their words operating is just as likely to cause more pain. Since I have a rare autoimmune diseases that causes inflammation in the vascular system it’s been a challenge to get proper medical care. I have tried herbs, physical therapy, chiropractic care, messages, which actually increased the pain, yoga, water therapy, acupuncture which caused an allergic reaction to the needles because of this disease, medical marijuana, which has caused more pain not less. In the end I ended up in a wheelchair unable to wipe my own butt, much less care for my children until I went to a doctor who wasn’t a sadistic ass and he started me on fentanyl patch and norco for breakthrough pain. The first morning after putting it on I was able to get out of bed and felt like life had been given back to me! I’d suffered for over 10 years bed that with inadequate pain medication. Like prednisone, neurontin and Lyrica, which made me fat diabetic and sicker! I eventually got gastric bypass surgery to help with the ridiculous amount of weight the steroids and Lyrica/ antidepressants caused . But it meant that I couldn’t ever use NSAID’S again, especially since I have marginal ulcers that just don’t want to heal up! So when I went to my doctor and he said that according to the Trump administration I am on too much opiates and he has to taper me down to “acceptable” levels I asked what I was supposed to do for the pain because I refuse to go back to the days of being an invalid, He gave me a prescription for NSAID’S and when I reminded him that I have marginal ulcers that can esily cause me to bleed to death, he said well then don’t take them. I did indeed take them because the bottom line is that if they kill me then the pain will be gone! I’m rethinking the decision as I’ve been laying in bed all night with acute abdominal pain and I’m thinking that heroin isn’t that bad if you ingest it . They actually prescribe it for pain in Europe and if you ingest instead of inject it turns into morphine naturally by your body. After all ODing has got to be better than a GI bleed!
I am a victim of mesh, which was implanted for 10 years before I had most of it removed. A few months after the explant I had spinal surgery and contracted MRSA in my spine, resulting in multiple surgeries, and osteomylitis. I have extensive nerve damage and scar tissue.
When I knew I was losing my insurance, I tapered myself off of opiates. I started using Cannabis and Kratom to combat my pain, PTSD, depression and anxiety.
I have a phobia of doctors now. I am also no longer a candidate for surgery due to MRSA, including any invasive proceedures.
I am lead organizer for the State of Alaska for the National Protest to educate the public on how people with chronic (and now acute pain) is suffering from our nation’s addiction problem.
My son was given a spinal injury in 2014 at 20 years old by a woman talking on her cell while driving. She ran a red light and started his journey into chronic and lifelong pain. I have watched as doctors refuse to give pain medicine for documented pain.
It wasn’t as bad in 2014 as now. He has just had spinal procedure at AA pain and spine. The doctor refused to give any post op pain meds. I fired him and found someone who would give next procedure with planned post op pain management plan.
My son experiences autism as well and has sensory issues that affect his pain tolerance.
This refusal to give pain meds especially following surgery is tantamount to patient abandonment in my opinion. Watching my child suffer for the last 4 years and having to fight the doctors to help him suffer less has been horrible.
He has finally gotten relief as the result of his pain stimulator surgery.
He is now headed back to college at Embry-Riddle and DVR is helping him get a job.
He has basically been bedridden for these last few years.
On a smaller scale, I was just in a car wreck and had minor injuries. The ER doctor told me to take alleve and stretch. I am still hurting and have missed week and half of work.
I assure you, pain comes to us all. Either us or our beloved child.
Thanks again!
Kelly “Taryn” Ellis
I was told he just has to suffer- they literally said this.
I never felt so helpless in my life. I had to go to marijuana store to try to help him.
I am a person that works full time and Strives to continue to do so vs going on disability. However, when you have pain everyday of your life and the one thing that assists you in relief is cut in half, disability becomes the only option. It appears right around the corner when there was a recent time it seemed at least 5 more years away.
I have SLE(lupus), Rheumatoid, Psoriatic, Hashimoto thyroiditis, degenerative spinal disease, hypergammaglobunemia, occipital/trigeminal neuralgia, small nerve fiber neuropathy, failed back surgery with fusion, cervical herniation, erosion is wrists etc etc etc.
I continue to work and try as long as I can. However, I soon realized how I was able to continue to do so recently. The HB21 wasn’t suppose to affect patients like me but supposedly it is anyways as my physician is cutting the prescriptions. I have heard the DEA is putting pressure on them, however, what I am trying to wrap my head around is how can one agency go against a state law that put patients like me as exempt? What I don’t understand is how are people like me being affected by this when we need our healthcare more than ever.? Here is what I truly have to say to the government surrounding this:
I am a chronically ill, ADA citizen, that is trying to continue to work full time. I would like to start by stating, not all chronic pain patients are addicts and abusing what is being prescribed. What amazes me is that bars aren’t restricted in how many drinks one can take, but yet people are killed by drunk drivers every minute of the day. The people for whom go to bars aren’t even at the establishiment for treatment of a medical condition. However, if they critically hurt someone in an accident due to drinking that person can only have 3 days of relief. Something is wrong here. I am in complete support in having records being pulled to ensure people aren’t getting C2’s in different states, pharmacies or by different doctors. However, when the government begins to dictate what physicians can and cannot do, it becomes dictatorship. I am a person for whom you do not know, but are definitely inflicting. I have a great job and am in the medical arena. The other part of me that you need to understand is what I live with everyday. I have Psoriatic and Rheumatoid arthritis, SLE(Lupus), Small nerve fiber neuropathy, hashimoto thyroiditis, fibromyalgia, spinal stenosis, occipital and trigeminal Neuralgia, hypergammaglobunemia, osteoporosis( I am 45 and have had since I was 37), osteoarthritis and more. I realize that you truly can’t understand what I live with and what I go thru everyday because you do not live it yourself. That is the main issue here and with what is going on. There are laws being made that are negatively impacting patients, like myself, by people that have no idea of what is like. You won’t have any idea until you walk in my shoes. I hope you never have to because I wouldn’t want you to feel what I feel daily, however, what I do know is that if you did, you wouldn’t had signed HB-21 into effect and allow the DEA to scare physicians where they aren’t even able to practice medicine as TRAINED. I realize that I am not an acute pain patient, however, all of this is scaring the physicians so badly that they are cutting our medications. I can work because the pain I feel at 150% is taken down to 40%. Can you imagine waking up every morning and your hands and feet are swollen and you can’t move them? Can you imagine times when you can’t even bend over or play with your child because your back hurts so badly? Can you imagine not being able to bend your wrist because you have a hole of erosion within it? Can you imagine that simple things in life such as bowling or golfing is taken away and if you do it for one day, you pay a price? Can you imagine every morning waking up and feeling every muscle in your body hurting as if you had been beaten? Can you imagine the one thing that decreased all of that being taken away from you??? I am sure that you can’t and unfortunately, I wish that you could for one minute. I have learned throughout my life that you can’t control what others do no matter what you do to change things. I would had thought that being in a position such as a president, congressman/woman, governor and senator that you would as well. The point to this statement is, if people abuse their medication, they are adults. I do not agree with physicians and pill mills, however, doctors for whom are treating real illnesses SHOULD NOT be penalized nor should the patients that are LIVING THE DISEASES AND SUFFERING. The government is not controlling the bars that give drinks to those that get drunk and kill people are they? Is the government controlling how many drinks those people can have? NO, you are just trying to control those that abuse medication and penalize everyone else that doesn’t. You are penalizing those that need the medication to do the basic things in life that you take advantage of. You are penalizing those that are trying to have a quality of life for just ONE MINUTE. You are penalizing those that are able to work because their pain level is reduced to 30% when they are used to it being 120%. You are truly trying to control what people do in the wrong way and it is affecting and inflicting the chronically ill people such as myself. If you truly want to stop the opioid crisis for which classifies as heroin, take care of the borders and please stop inflicting suffering onto us that already suffer not by choice, but by diseases we have. Stop punishing your people that are sick and lead them into disability if they aren’t already on it. Please stop and educate yourselves on what is going on and what the people are like that are chronically ill that are on opioids. There isn’t a way to stop the addicts because unfortunately, they are grouped in with the chronic pain patients. Have you stopped the drugs on the streets? However, what you are failing within your sight is when you are stopping them or trying, you are hurting Americans with Disabilities. Not everyone on opioids is doing it for their pleasure but a true medical need to survive with pain that you can’t ever imagine on a daily basis. I can appreciate the thought behind all of this, but what I don’t appreciate is the lack of thought of those that are impacted that shouldn’t be. Shame on you as our government that we are to trust.
I was diagnosed with fibromyalgia in 2010, Rheumatoid Arthritis in 2012, Psoriatic Arthritis this year, and also suffer from chronic EBV (mono). My nightmare started in 2009, with sleepless nights and excruciating body pain. I suffer everyday with widespread muscle pain, bone pain, joint pain, and winter days are a nightmare for me. I have four children, I have no choice but to work, as I need to take care of my children and that is becoming more difficult. My pain management doctor had to reduce my pain medication dosage at the end of last year, due to the new guidelines, which has wreaked havoc in my life. I go to work, but my work suffers, due to how awful I feel almost everyday, I come home and go straight to my bed, because I hurt so bad, but still need to make dinner for my children,’help them with homework, and need to spend time with them. I can’t walk for long periods, go shopping, clean my house, let alone enjoyable things such as dancing, roller skating, as my pain will flare through the roof, and I’ll be down for two days. Without pain medication I would not be able to get out of bed at all most days, I would not be able to function and be a part of life. My quality of life will be nonexistent, as it’s close to that now, due to the decrease in my medications, because of the new guidelines. I don’t abuse my medication, I’m not getting high on my medication, it’s simply helps me participate in life. Until you’ve suffered with chronic daily pain you have no idea what life can he like or how these medications save our lives. We should not be punished for the people out there abusing it. I don’t think it’s difficult to tell the difference between patients who need it and aren’t abusing it from the “seekers”. Or the difference between the doctors who are responsibly managing their patients pain and the ones who are not. All of these changes are destroying chronic pain patients quality of life and I pray you never have to walk in one of our shoes.
I’m from the state of VA lived with serve mirgraines for 39years the pain pills give the the quality to my life to be abailty to do the things I need to do take care of myself .Yes some days I still in bed .But I’ve also had about 22 surgery done on one of wrist I go to bed with pain since all the doctors took them away from me .Cut you off and let you go thur the withdrawal of them Some doctors need to step up to the plate for some of their patients that has chronic pain like me and others or find use something that will work.
A serious motorcycle accident where as I was forced off the road by a vehicle driven by someone who neglected to even stop 15 years ago has left me in continual pain from a laundry list of injuries including a closed head injury that when awoken from coma had me speaking fluent sentences in reverse ., thankfully my brain had self corrected apon the second coma awakening. A crushed trachea from the full face racing helmet I was thankfully wearing, broken collar bone, fx scapula , broken tip of shoulder , all on left side, 6 broken ribs , collapsed lung , spinal compression fx , with nerve root impingement , broken tib fib , still have titanium rod and seven screws holding that together. These injuries have been treated successfully and responsibly in that time span until this year. This year found me in an most uncomfortable forced taper feeling pain that I have not felt since the nearly year of rehab that I went through. Yes I was on a good bit of meds that I accustomed to , and even finishing two college degrees in my recovery. I don’t blame my doctor I know he under pressure to reduce all pain meds due to Gov. Mediling . I adjusted to a semi good quality of life that now with cold damp weather approaching has had the thought of whether surviving the accident was such a good idea after all, more than once.
Having a genetic pain syndrome, going through reconstructive surgeries on 9 different orthopedic needs, being hit by a drunk driver who thought he might amputate my foot and move my brain around, i am unmanaged.
My pain is literally something that makes me, not want to kill myself, but die.
I have a look, one that many profile as a user, abuser, druggie.
I am so ultra conservative, but also quiet, i don’t often speak up for myself.
My own doctor who has prescribed pain meds for years(!), balks and challenges me on addiction- this doctor sees i do not ask for meds often, early, demand uptick in strength… but she asks/accuses me over, and over again.
I have coping skills for pain, i don’t have any coping skills for the ‘seeker interrogation’. I will go into the ER and not ask for pain meds just because i do not want to deal with the ridiculousness. I have gone in with a cluster headache, nicknamed “suicide headaches” for good reason, and i explain what is happening to the best of my ability, request pain meds before all the questions and been given something i have sitting at home; this medicine i have at home is not for immediate relief, severe pain, it is for a migraine. Had i wanted headache medicine, i never would have subjected myself to moving through the world, dealing with medical people, bright lights and lots of action!
Treat my pain, take my blood, test my urine (i will give up my privacy rights if you will treat me!) because i do not care to explain myself every single interaction, especially because i have never abused any substance, let alone something intended to give me some quality of life!
I hurt too much to do ‘this’!
I had lumbar surgery in February of 2014 then I had cervical surgery in August of 2014 and it has left me with extsive nerve damage and everyday I’m in pain I can’t sleep at night because of my neck. I can’t get any relief from the pain it’s non stop the so called pain management doctor I see has only made my pain worse with all the shots he’s done because I’m at the max of what a patient is allowed to take medicine wise. Well who ever made up these stupid rules to not let the doctors care for us should have to go a mile in our shoes. I just wanna be treated like a human being.
In 1995, I herniated 2 discs which sent seering pain down both legs. After steroids and rest for 3 weeks, I was sent into nuerosurgery and I was so hopeful. That hope was let down when 3 weeks later, the pain was back. After visiting the Mayo clinic, an abdominal histerectomy was determined to be the treatment that would stop the seering pain. After that surgery, it was back again. My entire family then moved up to Ct., so I could see the head of spine surgery at Yale Hospital; he was a renowned Dr. in the field of spine surgery. I went through the best PT and after that a simple Xray was taken, while I was bending forward, and it was determined that I had a vertebrae slipping out and unstable. He did surgery on a re-herniation, which only happens to 2% of herniations. Finally, after years of pain management treatments like the TENS unit, injections and even an implanted pain pump; my Dr. decided that I had resulting nerve damage which sends pain signals constantly down my legs. With all the medical options exhausted, the only humane treatment is pain medicine. (I refuse to call it opioids-its humiliating) Without my medicine all I do is pace around the house in excruciating pain. Laying in bed, sitting in a chair and pacing around becomes even more unbearable after 15 minutes, so I have to keep switching around. What kind of a life is that? Even though I am blessed with a wonderful Dr, I know he will be forced to taper down my medicine soon and the anxiety of not knowing if I will get my medicine filled or not is causing my pain to escalate. The pharmacists have the power to reject your prescription for any reason and they don’t have to share the reason with you. It could be that they really are out of stock due to the deliberate cuts from the CDC but I have to way of knowing. They seem to have more power than the Dr. This should not be going on in the US…or any other place for that matter. I don’t want the government in my medical matters anymore. We need to start trusting and respecting pain Drs again and stop punishing patients like they’re criminals.
I was diagnosed nearly two years ago with Small Fiber Neuropathy. It has accelerated so quickly throughout my entire body, feet, legs, back, arms and hands. I had a spinal cord stimulat placed permanently in January of this year, with very little relief. The pain as I describe it, my feet feel like the are on fire, walking on glass and for good measure I get electrical shocks going thru them. My legs have the same burning pain, feel like they weigh 1,000 pounds and my shins have started with a constant and relentless burning. My back is bad I can barely walk. My arms hurt and my hands are sore to move and extremely sensitive to temperature changes. Just washing them can be so painful. And let’s not forget about the fatigue, constant fatigue from not sleeping. Or sleeping short periods at a time, some nights awake all night. Recently came the diagnosis that it is now affecting my bladder and kidneys. Ultimately I will need to catheratize myself daily to void my bladder. I was out of work for 11 months but recently have tried to return part time, which has been extremely difficult.
My goal has, and always is, been to work. I have maxed out on two prominent medications and have run thru the list of others associated with SFN. I am now climbing the ladder of opioids trying to get at least some relief and be productive. The amount of stress this has caused to me and more importantly my family is at times insurmountable. I explain my pain this way: 1/2 my days I am in the worst pain I have ever been in, the other half the 2nd worst. My pain doctor tells me of a change in 2019 limiting ALL opioid patients to certain amount per day, which will cut me in half, as of now. I don’t abuse, sell or give my meds to anyone, I don’t abuse the system. I need them to be productive and without I am another statistic on disability.
I am a twenty-six year migraine patient (my first migraine was at the age of twenty-two), the last ten of those years I have been in pain chronically and almost daily. I also have severe celiac and thyroid disease. I have tried 70+ treatments including all of the non-scientifically proven alternatives that the CDC recommends in their guidelines. I have lost two jobs due to pain. I became even more disabled when injectable opioids were removed from my treatment plan due to nothing but changes in federal regulation. (Ironically, I have been denied disability insurance three times, so while the government’s regulations have made me more disabled, they won’t help me when I cannot work). My relationships with doctors have been seriously damaged due to opioid fever. I no longer set foot in an ER, which used to be a place of final resort, but also a place where I would finally experience relief. I have actually been made worse in the ER after submitting to non-opioid treatments that I knew I was allergic to or had serious reactions to. I submitted in the name of gaining trust with the ER doctors, but in the end, they still wouldn’t give me opioids. I have heard stories directly from excellent doctors that they are closing their pain clinics due to government harassment. These doctors are the creme de la creme – for the pain community to lose them, it is truly a tragedy and an unnecessary one created exclusively by the government. Pain is still vastly under-treated whether you are talking about opioids or not, and if we are looking to move away from opioids for pain treatment, having hundreds of pain clinics close down in this country is moving in the opposite direction. I live in constant fear that Kaiser Permanente, my doctors and/or the government will remove my access to opioids. I also feel completely under attack by society, the media, the government, and the medical profession. I am an advocate, going to Washington once a year to advocate for an increase in NIH funding for research. I take vacation time and pay my own way to attend this event (and it’s not cheap coming from California). I believe that part of the answer to this problem is to develop scientifically proven pain treatments that work BETTER than what we have now. At that time, we can make opioids obsolete. Until then, they need to remain on the table. A last resort, but an option. Ten years ago there were indications that increased focus on pain treatment was making some headway. Now we’ve taken two huge steps backwards. The bottom line for me is that I live in constant fear that one day my opioids will be taken away from me due to no fault of mine and with no recourse. I have tried to find a lawyer and have never even received a returned phone call. If I lose my access to opioids, I believe I will lose my job (the bit of work I have left), lose my house, lose my health insurance (which also means I won’t be able to find a new doctor to prescribe my opioids), and then become homeless. This isn’t a stretch, and I think about it often. Pain has ruined my life, the government has made what was left of my life an anxiety-filled nightmare. It is obvious that there is an inverse relationship between opioid prescribing and ODs – prescribing is at a fifteen year low, and ODs are at an all-time high. The CDC should immediately withdraw its guidelines for a complete revision, since their goal of saving lives has failed miserably.
My issues are numerous; chronic hetrotrophic ossicificationb(bone growing from femur thru my glutes & has made it 1/2 way thru, no surgery due to damaged muscles), lumbar disc bludges, cervical disc bludges, b/l carpal tunnel, nonunited fractured sacrum & coccyx, damaged pubic bone (causing vaginal atrophy) severe depression, anxiety, ocd & insomnia, diabetic, chronic metabolic syndrome, damaged nerves in leg, titanium in ankle, gatrointestinalthritis throughout body & damage being caused to other parts of body(muscles weakness/spasms) from limping/pressure & I feel guilty & ungrateful for praying for death but but feel like a burden to family & 1 friend I have left. Been told I’ll never be without pain no matter what meds are given to me & I’ve had extensive physical therapy. Life as s hell, I’m tried of “looking normal” & the world has given up on me & I’m passed around from specialist to specialist telling the same medical history over & over & to top it off, I’m allergic to ibuprofen & nsaids upset my ulcers. My allergy lst is huge including the sun, chocolate, chlorine, bees, flowers, perfumes, lotions, & a crap load of meds. All because of domestic abuse car accident &I over used my body trying to prove everyone wrong when they said I’d never walk again. Every job I’ve left, it’s taken 3 people to replace me or they’ve called to get me back but my body finally gave out & it’s hard to move daily & my mind is crap compared to what it used to be. Who can I turn to for help when people abusing the system have wrecked it for me. Taking the lowest dosage of opioid without relief but scared to ask for anything more but dread waking up every day & barely surviving hoping my husband isn’t the next person to abandon me, so I fake smile until he leaves & cry most of day from pain & missing my identity, my feeling of worth.
I am a Florida senior citizen with severe chronic pain every day, even after having years of cortisone injections, acupuncture, physical therapy, surgery and most other non-pill options.
Florida Governor Scott, with the help of DEA, has brow beat our doctors into submission. The legal maximum allowed of Hydrocodone is 5 mg, 3 times per day, no matter what level of intractable pain you have, unless you have cancer. Some large pharmacy chains here won’t even stock hydrocodone because they don’t want Scott and the DEA on their backs.
We are required to visit a pain specialist doctor every month for no more than 5 mg. Hydrocodone at a quantity of 90 pills ( 3 per day), non-refillable. I watch each month as elderly, crippled and very ill patients drag themselves into the doctor’s office, some by wheel chair, usually with a care giver, each month. My heart aches for them. My husband has to take me because I can no longer turn my neck or use my feet to drive safely but I can manage to get around slowly with a walker for a few minutes at a time.
Providing your MRIs, CT scans, xrays, etc. are of course required. Plus we are required to sign a contract and be on a “look-out” list for DEA, pharmacies and doctors to spy on us and to prevent doctor shopping. So much for HIPPA.
Since Governor Scott came into office he has lowered the allowable prescribed hydrocodone from 10 mg. 4 x day, down to 5 mg. 4 x day to now 5 mg. 3 x day. I cried when my pain doctor announced this latest cut because I knew this would finally make me bedridden. He chastised me for crying and told me I should be glad I get any pain meds at all! We are treated like criminal cattle. So now I’m in constant pain and bedridden, just as I feared.
The latest blow is pain doctors here can no longer take patients without insurance! I was uninsured for over a year when I had to quit work at 56 and go on disability. I can’t even imagine how I could have gotten by without strong pain meds, paying cash back then. I feel so sorry for people in pain here in Florida. It’s not fair, it’s not right, it’s just cruel!
I’m not alone in the senior communities here in Florida of giving serious thought of suicide due to unrelenting pain. Many already have. But instead of killing myself we are selling and packing up and moving out of Florida to a more sympathetic and rational state that still allow doctors to make our healthcare decisions. There aren’t many left. Starting over at 65 years old and ill will not be easy but I want a life again before I die!
Oh and by the way, please for God’s sake do NOT vote Scott for Senate!!! He made his fortune off managing a hospital and Medicare/Medicaid money. So he KNOWS about sick people in pain but chose to make us suffer. He’s done other tricky, unethical things against the citizens of Florida too. He is an evil man. Truly. My opinion.
To whom it may concern,
I’m a 50 year old father of a soon to be 25year old daughter. I was 28 years old when I was diagnosed with Psoractic Arthritis “PsA” I was working full time for about 9 years in Facilities maintenance. I started at the bottom working in the warehouse to starting work full time in 1987. After 17 plus years I was starting to miss work and was laid off in July 17, 2003 and collected unemployement for 6 months. I couldn’t find a job at all durning that time. After I finished my unemployement I applied for SSDI and was approved within 90 days. That was in 2004. 5 years later I had my right foot fused together with 6 scews. A few months later I had to have my left hip replaced. In the years after I had herniated disc’s throughout my back. I’m in need of a right knee replacement. One year ago I was told I was to young to have my knee replaced. The surgery I need in my back I was told that I might not walk or live through the surgery. I’ve been on many biologic’s throughout my time with PsA to help slow do the progression of my arthritis. My hands and feet are fused together due to the PsA. I’ve been only to some relief from pain meds. I can go on and on with the issues PsA causes. You can look them up. Not every person is the same. I thank my Rheumatologist for the past 14 to 15 years of helping me live some what of a quality of life. It was sad when I was forced to start a taper off my pain meds. I believe that doctors can’t do the job that they studied and learned how to treat my pain be taken away from law makers. Please don’t take anymore of my meds away. If I can live until I’m 60 without suffering anymore. I can say that I lived the best that I could. Think about what your about to do? I’m being punished because of others and it’s just not fair when we can live some what of a life. Don’t punsh me… please I ask that you read these laws. One more thing I had done with like help is having a spinal cord stimulator implant done last September 12, 2017
Regards, Chronic pain patient
Eugene H Flannigan
I have Reflex Sympathetic Dystrophy/Chronic Regoinal Pain Syndrome and live in daily pain! I was injured and the nerve in my left leg was affected. My leg burns like I am being electrocuted, shot, or stabbed through my shin. It burns while being frozen on the outside and it feels like I am carrying around an ice barge. I get crushing pain as well as if an anaconda is wrapped around my leg. The pain radiates to other parts of my body during a flare up. I can’t walk most of the time and spend my days on the couch usually crying in pain. I get Ketamine Infusions, Lumbar Sympathetic Blocks, and head to toe joint injections as treatment. My Disease is rated the most painful disease known to man and called the Siucide Disease. You lose your quality of life, independence, family and friends and the pain is so bad it consumes you. My Pain mngt Dr. does not prescribe Opioids. If I need an opioid for breakthrough pain relief due to my condition I should NOT be denied! I went through a Breast Biopsy and due to my condition the RSD spread to my breast. The Doctor refused to prescribe even a small RX for the initial days after the procedure he performed causing the added pain. I do NOT abuse drugs, I don’t drink or smoke and I don’t like the fact that medication that could help me is being denied! I also suffer from Fibromyalgia and RA. All Narcotics or pain relieving drugs should be dependent on an Individual basis as needed per condition of patient.
I was in a car accident in 2012. I didn’t think it would turn my life around but it did. A small ache in my back soon turned into widespread leg pain. I tried muscle relaxers (drs prescribed like candy back then) and the chiropractor. My chiro suggested a mri once it didn’t show signs of improving. The mri was officially noted as clear but that was far from the case. I actually had an over 4 cm large tarlov cyst on my sacrum eroding it. The cyst is full of spinal fluid, part of a nerve root for the dura, and the size compresses and stretches nerves around it. As time passed, the pain increased and went to the other leg and I was barely able to even walk to class without the pain bringing me to tears. A surgeon said he could help and we discussed the surgery in full detail. He left out the risk of arachnoiditis. The surgery was performed incorrectly, and ultimately failed. The surgery also caused another rare disease that affects my spine, adhesive arachnoiditis.
One of the worst memories I have from after the surgery is when I had asked a nurse to help turn me (which was allowed, I just couldn’t sit up or walk.) I asked for help to roll over to the less painful hip. I couldn’t turn myself at all because the pain was too intense. I ended up throwing up the pain medication and it took over an hour to get anything different.
After I was sent home, it was a brutal dew months of recovery from the surgery. The pain was excruciating. I knew something wasn’t right by how the pain felt but the surgeon wouldn’t believe me. Next thing I was diagnosed with adhesive arachnoiditis from the surgery and sent to pain management.
Pain management was a joke. They told me the pain was in my head. That I had surgery which means the problem was fixed so no reason for me to hurt. The next appointment they even told me that I was going to kill myself and lied on my chart to kick me out of the program.
Some days I can’t properly feel my legs but I can feel the searing pain every minute of every day. My dr tried to get me into palliative care but they refuse here because I’m not dieing and about to enter hospice. So I get to continue being undertreated by mr dr who wishes he could do more but can’t.
Trying to Live, Trying to be like before Pain, Where did my Friends go?, “Press On Regardless”, God, it’s so Hard!
My chronic pain began in 1999 from an auto accident of low speed, high inertia impact. The resulting fracture of L5 was missed until another physician reported newer findings. This was in late 2002, with severe lower back and left leg pain which would go numb for several hours. Under went L4-L5 fusion with laminectomy successfully, however after one week the pain in the lower back and left leg returned from a level4-5 pain preop to a level 10+ post. X ray showed that the retaining screws of the vetebral hardware and the laminectomy anchor in the sacrum had been pulled out of the bone. Reoperated upon to remove and replace dislodged appliances resulted in damaged nerves S1, S2, and spinal column.
Returned to work as traveling salesman in 2003, but had to quit in 2005 because pain meds and driving did not mix well for me and nor did going without till the end of days work . Physiatrist then moved to Fen patch by which I had significant relief at the lowest dose. I am also prescribed norco max dose, and 7 other pain related medications. With these I can tolerate pain most days, however I do spend about 20 hours laying flat a day and only get two one hour periods of sleep per day. My S1 radiculopy has affected S2 bladder control nerve causing the Neurogenic Bladder Syndrome. Thus with no innervation of bladder urine sensation, the presence of fluid in the bladder cross innervates the S1 nerve with pain/spasm involving the entire left leg. This occurs about every half hour especially while trying to sleep, though not as severe while upright during the day.
My activity was drasticly affected this year when my PBM company significantly reduced the number of F patches allowed per month no matter what my prescribing physician argued for. Then in June of 2018, I had a bad auto accident resulting in L3/L4 disc protrusion with cord impingement. I have level 9 to 10 constant pain
with which recently received a steroid injection with some success intermittently. Unfortunately, my pharmacy benefits management company has not allowed the return to original Rx level.
I know how lucky I have had caring and willing health care providers. but I know at this rate it can not last unless we start making the needed combined Voice!
I had total knee replacement in 11/2015. In February 2016 had a laminectomy of C3-5. Discovered st that time I had DISH/ Forrestiers disease. Jabe had 4 knee scopes am needing rt knee total replacement. Had spot removed from bladder. And last but not least rotator cuff repair. I was taken off pain meds in 2017. Only receiving them for 6 weeks after surgeries. Yes I am in pain but Lyrics and flexaril which doesn’t touch it.
I have two diseases I live with which cause incredible constant pain – Ulcerative Colitis & Trigeminal Neuralgia (otherwise known as the “suicide disease” because of the pain.) I’m currently being treated with pain medication through a pain management clinic which allows me to have some quality of life. However, if it comes down to me being denied that medication (opioid) I seriously wonder how I will continue to survive.
I’ve told my nightmare story so many times it is exhausting. It seems I have to repeat it again monthly to my pain management doctor too. My back has hurt as far back as I remember, even as a child. I was formally diagnosed with scoliosis when I was 15 years old. I’m now 36. My spine is shaped like an ‘S’ with 70 degree curvatures. In 2015 I was finally able to get in pain management and I also had my spinal fusion surgery that year. I am fused from the top of my thoratic spine all the way down to my pelvis/sacroiliac. I can no longer bend side to side nor reach certain places like to shave my legs. I contacted MRSA (HA-MRSA) during my surgery. After two trips to the emergency room and almost dying they finally tested me and said I was septic and starting to go into septic shock. Three weeks after my spinal fusion I had emergency clean-out surgery for the MRSA. That was followed by 8 weeks of IV antibiotics and home health coming out everyday. I will also be on antibiotics for the rest of my life. The flares from the MRSA superbug infection are the worst pain I’ve ever dealt with in my life! Worse than childbirth, worse than spinal fusion with mo meds for 12 hours because of low blood pressure, worse than a c- section! I can tell the docs don’t believe me when I say its the worse pain ever and a solid 10, but it is! I wish they could feel it for themselves. On top of all of this I’m still having tons of back pain as well as horrible new pains from the surgery and hardware that I didn’t have before. I was still seeing my regular pain management doctor, still on a pretty low dose opiate and Soma, a muscle relaxant that actually works. July 2018 he said he would no longer be prescribing narcotics and all his patients would have to find a new pain management facility. I hate change so this was very stressful for me. I am now at a new place that seems to actually care! I’ve never ever had a doctor that actually cares before. I am still on a relatively low dose opiate even though I should be on something better, but because of the “mme regulations” they cannot prescribe much. I was also taken off my Soma and put on a muscle relaxer that doesn’t work half as well. This is also a new “rule” according to the pharmacy. Walmart refused to fill my opiates because I had previously been on Soma. They looked at it wrong and thought I was still taking it. Therefore I had to go to a different pharmacy even though in my pain contract I’m not supposed to. Every time I try to fill my prescription at Walmart for the last 3-4 months they do not have it in stock. This is just regular Percocet… they should have it available. I have to physically go around to all these pharmacies while in pain to check because of course they won’t tell you over the phone if they have it or not. It is a nightmare being in pain and nobody chooses this life!!! The opiate manufacturing shortage needs to stop (which comes down to our government putting a limit on manufacturing), the pharmacy and hospital shortage needs to stop, the MME limit needs to stop. It is utterly ridiculous for the limits to be so low for those of us in excruciating chronic daily pain. This is not just every day; it is every minute of our lives awake asleep it doesn’t matter. It’s chronic pain. Never ending. It drives a person to insanity when you can not control your pain. I cannot hold a conversation when I’m in excruciating pain. I cannot help my child with homework, do dishes, do laundry, shower, clean house. All of that comes to a halt and you just stop doing it because it is going to make your pain worse. God bless the doctors that truly care and understand. There are very few of them out there. In 20 years I finally came across ONE! That is sad. It shouldn’t be like that.
I had a pretty hard fall and fell off of a ladder. I went to the Dr and the doctor told me because of a previous operation I had a month prior and was given a small prescription he could not prescribe me anything for pain.. I have been in agonizing pain from an injury from the fall that will take 6 weeks to heal. I don’t care for the pain medication but in this case I really needed it and pleaded with the doctor. I have missed work for the past week. I just want to have some kind of voice and input because I there are people that really need it and we suffer due to the abusers.
I’m at my limit. My doctor won’t prescribe any more narcotics and what I’m taking doesn’t cut it any more. I can’t imagine living like this. This is not living. If it wasn’t for my grandson I wouldn’t be here. I’m so very grateful that I see him. He is so kind to me and understands that I can’t play with him. He will crawl in bed with me and we read together and play games. Don’t worry about me I’m not ready to go, but I fear my future.
Life becomes progressively unpleasant as my pain medication is reduced against my doctor’s wishes. It is clear that my health is declining and I will face an early death unless I receive proper medication. My blood pressure is rising along with increasing ill health and more severe depression. Th pain in my legs often prevents standing or walking.
I’m going to be 60 years very soon. I have a lot of discs in my back that are completely crushed down to nothing, or herniated-bulging so bad that I can’t even walk far at all. I also have hip pain so bad that I haven’t even found out why yet, but also inhibit my walking, and both of my knees are bone grinding bone and so painful that from all these things I wake up crying from a deep sleep, and most mornings I need help getting out of bed. I am allotted 4 hours a day for an aide to come in 7 days a week to do cooking and cleaning and my hygiene needs for me. I have to use a motorized chair to go anywhere. If they take my pain medication away from me, I wouldn’t be able to take the pain. Hence no reason to go on.
I was born with undiagnosed/undetected birth defec. I was in first grade when my hearing loss was first detected. When I was eleven I became self aware that something was different about my abilities in regards to my back and legs. I also had series of dizziness and headaches. When I was 16, I was hit by a car and thrown about 10 ft in the air and landed straight back onto my feet after slamming into the pavement on my hands. I went untreated.
When I was 21 I started my life long care of chiropractor appointments, physical therapy and design my own exercise program. After seeing a orthopedic surgeon I was told that I had some weird birth defects and was sent home with steriods. For the next ten/fifteen years with periodic injuries I went on with my life. When I became stricken with what appears to be fibromyalgia. With medicine, proper diet and exercise I overcame my symptoms twice. In my thirties I still lead an active lifestyle in spite of my pain and being turned away by multitudes of doctors, being told periodically that I was a hypochondriac. Took ten years to find two doctors who would listen to me. Thank God cause After carrying my son I started losing use of my arms and since i was already on a high dose of ibp my doctor started me on Vicodin. Which I was on until I had back surgery in 2014.
I went in for a simple disctomy and came out unable to walk. The birth defect in my spine was my nerve was attached to my disc. After hours of man handling my nerve it ended up damaged. Here is the ticker…even though I was a thousand times worse I was put on less medication. Still with a 84 year old mom and a child to care for I was determined to walk again and find my new normal.
During this time I have tried more of the non opioid pain management. I have been subjected to injections and because my two wonderful doctors have retired, and due to the herion trade, I am fighting to be heard again. In oct of 2017 the pain management took away a dose of pain meds. Actually they took away all the patients a dose of medication. Just that lost of one dose has drastically changed my abilities to care for my self, my son and mother. Two of my doctors have repeatedly appolized for having to cut me of my meds because their boss told them to due to a DEA visit. They have both left the practice. In fact the office has completely closed down. I can not find a decent primary care physician that will treat the whole body. It’s a known fact that you need an increase of opioid medicine for it to continue to be effectives. It is what works for me and if I continue to spiral downward instead of maintaining my now new normal…who knows what I am capable of doing.
Please we must stop the blame on the doctors and chronic patients. Look at the real statistics.
I have responsibly been taking muscle relaxers, opiates, and Ativan, for many years, with the same primary physician for 14 yrs, and several other specialist’ s thru out the yrs.
I have tried all options available, many different medications, and after so many years of trial and error, and suffering horrible daily pain, I am finally taking the best meds & dosages to take the edge off enough to bear it. I’m in a wheelchair, disabled, and can’t travel or do much. But it’s the best we can do. If my medication is taken away, it would be intolerable mentally and physically. A person can only live with so much pain 24/7 before they feel the need to stop it, at any cost.
Then I will be a wrongfully reported statistic. Chronic disease and pain patients are NOT ADDICTS abusing medicine. We are NOT taking or craving heroin, etc. There is a difference between wanting pain to stop, and wanting to get high.
To pass these new guidelines is a death sentence for chronic pain sufferers, and it will effect the country by patients becoming a terrible burden for the government, healthcare system, insurance companies, and even national debt.
Who will be paying for all this added expense?
Why has the suicide rate increased so much since last year and next year expectid to increase more?