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I am a 52 year old woman who has been living in chronic pain for the last 20 years. I’ve had two spinal fusions and in need of one more. Although in major pain every day now, I will not agree to another surgery. I am scared of the aftercare and the pain management (or lack of) from another surgery.
My name is Teresa.
I am soon to be 56 years old and I am a chronic intractable pain patient and have been for 15 years.
While I understand what illegal and illicit drugs such as Heroin and Fentanyl are doing to our society, and a need to curb overdose deaths, there is another side to this saga.
Chronic intractable pain patients are having their medication tapered, lowered or taken away completely leaving them unable to work, take care of their homes and families and lowering their quality of life. Many pain patients are bedridden or less able to carry out daily tasks myself included.
I have Degenerative disc disease, osteoarthritis, multilevel disc herniations starting at the cervical spine ending at the lower lumbar spine, left hip bursitis, arachnoiditis, fibromyalgia,
severe neuropathy in both legs and feet and need bilateral total knee replacements because both of my knees are bone on bone. I also have heart problems and pain causes issues with that.
I feel like I’m being beat on every day.
The only time I don’t feel pain is the 3-4 hours of fractured sleep at night when I sleep.
Pain wakes me up I never get a normal amount of sleep because the pain prevents that.
I’ve had my medication cut by twice this year My Pain management Dr had been giving me 60MME per day then 45MME per day and its been cut to 37.5MME It’s had a big impact on my quality of life. I was unable to do a whole lot at the 60MME per day level. Now I rarely go out except for the Drs or for groceries. I am unable to shower daily or cook every day and forget about cleaning my house on any regular basis.
I have little quality of life. I don’t get to see friends, and It’s a rare occurrence that I’m able to go somewhere.
For the most part I am a shut in. I’m in bed in pain and this is not how I wanted to spend my life.
Many Primary care physicians are no longer prescribing pain medications opting instead to send their patients to a pain management Doctor.
Pain management Drs are taking the CDC guidelines as law, not a guideline in how to treat patients resulting in patients increasing pain levels and decreasing ability to function.
Pain Management Doctors including my own are losing sleep at night worried about losing their license, income, or bring jailed. They are stuck between the Government who is forcing them to take away their patients much needed pain medications and the patients who need them
Some Pain Mgmt Drs are closing their doors and going into other areas of practice leaving thousands to suffer because they don’t want to lose their license over being perceived as an over prescriber For many people it takes months to find another Dr. to treat them. Some cannot find one and they are left suffering. Other Pain Management offices are being raided and shut down before bring found guilty of any wrongdoing. This leaves thousands without any kind of help or relief from pain.
Prescriptions for Opioids have decreased markedly and yet overdose deaths are not decreasing. If a addict wants to get high you cant stop them. If they don’t have their drug of choice, they will find an alternative. They will lie, steal, manipulate and do anything to get that next high. So they find a way no matter what , meanwhile chronic intractable pain patients suffer greatly.
We are victims caught up in the opioid crisis being punished when we haven’t done anything wrong.
I am a compliant pain patient. I have signed a pain contract, undergo random urine drug tests and pill counts. I am responsible and keep my medication safely stored. I have never been high or had any euphoria taking pain medication. I should be permitted to have adequate pain control. A growing number pain patients have committed suicide because their medication were taken away and they couldn’t take the pain any longer. Compliant responsible patients shouldn’t be forced to suffer in pain.
I am a patient in chronic intractable pain, I’m not an addict. Please help me and people like me who are compliant and don’t deserve what is happening to us because of the opioid crisis.
Help return to us the ability to function and have some quality to our lives. Thank you.
Sincerely,
Teresa Cashman
I am a 54 Year old female born with a muscle disease. At 18 I was viciously attacked with knife and left for dead. Found on lawn and after am 11 hr surgery received 475 stitches inside and outside. I have had PTSD with severe panic attacks all my life from traumatic events first diagnoised after attack. 1993 had surgery to remove scar tissue caused from surgery after trauma and diagnosed with fibromyalgia same year. 1999 broke my back and had my first back surgery in 2000. i received every treatment possible before going on medication. In 2007 I lost a home for to a fire and 7 family members family numerous conditions including my late husband more PTSD. 2010 I was involved in a motorcycle wreck flipping me and my bike two times into on coming traffic Giving me a level 4 concussion with complete short term memory loss and broken eye socket. 2010-2014 went to several mote specialist attempting to receive help.gor pain and under went more test and procedures to curb the pain. 2016 had a Stroke that left me with different weaknesses from it .2018 was involved in a vehicle rollover wreck that left me with a broke neck that took me three months for dr appointment and surgery because I didnt know I broke it only that pain was severe enough to warrant several opinions. More PTSD events That surgery did nothing for pain, with a spinal fusion and discomotry, 2018 My PM was shut down because he didn’t complybwith state medical boards new rule of no opioids. He even sent me to another Pain management dr that said yes I was being treated properly and that he could even go up on medication which wasn’t what I needed to just to be kept at same level .. I went to another Pain Dr that admitted the ARKANSAS Medical Board will not allow her to wrote the meds required for proper treatment of my pain my muscle disease and found out that through seeing her I have two more problems that I must deal with on top of all my others. One being my stroke was probably in my spinal column and two more diseases or disorders. We being told we must pick what diseases we want treated necaue they will not treat more then one in my case PTSD with correct medication that worked at level it was being administered and fibromyalgia and all my pain. How do you choose what disease to treat becaise clearly I didnt want any of them.being treated inhumane and cruel. We are given the ability to have life presue any happiness and don’t have liberties because they are being taken from us. Clearly this is a humane violation under the 1961 Narcotic Drug Act and violation of our 8th 9th and 14th admendemnts.
I am a 54 Year female that began life with a muscle disease several traumatic events me classified as nervous Not until 1985 after being raped with a knife 11 hr surgery to see me up inside and out was I diagnosed with panic attacks and PTSD put on medication for it only after a psychiatrist stated it necessary. And put on adult meducations for my muscle disease same yr previous to attack 1993 had surgery to remove scar tissue from first surgery. Disagnosied with fibromyalgia 1993. 1999 broke back rods inserted 2003. Did every possible procedure to stop pain I had from back and all other my previous conditions. Finally put on pain medication and thrpugh trial and error found right meducation regime. 2010 involved in Motorcycle crash leveling me with level 4 concussion Complete short term memory loss and broken eye socket. 2018 rollover MVA leaving me with broke neck that was left untreated for 4 months and after spinal fusion and disc removal replaced with cadivar disc I am left with more pain. My PM was shut down after refusing to comply with state medical boards inhumane and cruel treatment of pain and disease patients Which through my life i had 21 doctors specialist all saying same thing medications were appropriate and now we are being told we must choose which disease or pain we want treated that we can’t be treated for them all with the correct medication regime. Clearly a humane rights violation and a violation of our 8th 9th and 14th admendments. The state medical board whose drs have never seen us are playing God with our lives.
I have had a chronic bladder disease called Interstitial Cystitis since I was about 2 years old. However, I was not properly diagnosed until I was 17. It was a long, exhausting road to get that diagnosis. I missed numerous days of school. So many in fact, my parents had to meet with the board of education to explain my condition to have me “pre approved” for any future school days I would miss and any future school days that I would be late. My senior year of high school, I had 3 teachers GIVE me my grade, because I missed so many days and would have failed and not graduated had they not. However, it absolutely was not because I wasn’t smart.
I am now 32 years old and have been dealing with this disease my entire life. My. whole. life. As a toddler, my adolescence, teen years, young adult, and now as a wife and mother- I’ve suffered. I have gone through every treatment and exhausted every single resource to control my pain. Nothing, and I mean nothing, has helped me or given me even the slightest bit of pain relief the way my pain medication does. Now, that may be hard for some people to hear. It’s hard for me to hear. It’s hard for me to accept that I have to take medication every single day of my life in order for me to be able to function like a normal human being. Something that most people take for granted, I’ve paid thousands of dollars to try and achieve. No sane person would ever ASK to have the life that I live. No sane person would ever want to live in my body. It is not fun. It is not glamorous. I hate the attention I get because of it. I cannot work, and am on disability because of it. All that said, I actually do love my life. I have an amazing husband, a beautiful 2 year old son, and the support of family and friends. I am able to give them that love and service in return, that they so deserve from me, BECAUSE OF MY PAIN MEDICATION!!! Please, to whomever it may concern, do not take away or punish pain patients for having an illness or ailment that they did not ask for. That would be complete punishment and an incredibly inhumane thing to do. If you’re going to take away pain medications from people who have legitimate illnesses, well, then I would suggest that you outlaw alcohol, tobacco products, and all fast food chains, because those things kill people more than an opioid kills a pain patient. Ridiculous. That is all.
Born with JRA. Now in my 30s and have limited mobility and daily pain. Now all of a sudden bc of all of the changes all of my treatments have been stopped or changed. Now I’m in liver failure. 34 years old and my life doesn’t matter. I have honestly thought it would be easier to just give up. I have followed all the rules. Never filled a prescription early. Never failed a drug screen. Never broken my pain contract but now that this war against opioid treatment is underway none of that matters. Kind of feels like a war against me…and all of the others like me. Why don’t we matter?
I have chronic acute Epstein Barr Virus
Hashimoto’s Disease
Fibromyalgia
Myalgic Encephalomyelitis
Polycystic Kidney Disease
Occipital and Ocular migraines with Auras
a torn rotator cuff, winged scapula, fluid in my collarbone and a SLAP tear in my bicep.
I also have patellar instability in both knees, am prone to constant sprains and torn muscles which severely limits my mobility. More often than not, I am in weeks and weeks’ worth of pain just from trying to function like a normal human being. To continue:
costochondritis
hiatal hernia
a slipped disc at L5-S1
degenerative disc disease and narrowing of the spine
polycystic ovarian syndrome
biliary colic
IBS-D and IBD
I have PVC’s and recurring chest pain
I have long overlooked Ehlor-Danlos syndrome and symptoms of MS
adhesive arachnoiditis
If this caused a deep inhalation of breath, or your head spinning; imagine living with them. Imagine not a single one of them taking a day off.
Having Hashimoto’s disease and its main *cause* Chronic Epstein Barr Virus is basically having infectious mono for weeks at a time. At any given time, for that matter. If you can imagine the worst flu you’ve ever gotten, then imagine it never going away. Hashimotos and Epstein Barr is having to drag yourself through the day, with fevers, nausea, loss of appetite vs ravenous insatiable hunger, and feeling like someone is taking a mallet to your entire body. Fibromyalgia is that pain, but with 16 bilateral trigger points. It is visceral, it is nociceptive, it radiates and it is *chronic*. There is no cure. Something as simple as cleaning your apartment or a celebration can trigger up to 6 weeks of intense, agonizing pain. So, you see, you’re paying all the way through the end of August for celebrating July 4th.Simple things like making your bed, doing laundry…playing with your pets!!!! There is no mercy card, no get out of jail free card. Anything and literally everything is waiting to drag you back down to the depths of despair, and a disturbingly amount of pain. Imagine getting in a head on car wreck. Now imagine the ER sending you home without having intervened on behalf of your pain. Now live with how much it hurt that day, for the rest of your life. Exactly why is this not important to these people making the laws, deliberately making people’s lives miserable?
So let’s say, like me, you live with these conditions every day. Every day, there is some level of the pain associated with these diseases. RARELY are any of them 4/10 and under. So there’s all of this ridiculous pain 24/7. Depression does not cause pain. Untreated pain causes depression and suicidal ideation. Worse even, when you’re a survivor of child abuse and have been diagnosed with rapid cycling bipolar, premenstrual dysphoric disorder, C-PTSD, dissociative identity disorder, and treatment resistant major depression. I know I can’t go into the ER for a “fibromyalgia flare”. I get treated badly enough as it is. So I wait, and I wait and I wait and I wait. I wait until something is ABSOLUTELY unbearable (7/10 and up) I wait until I have exhausted every possible measure of self-care. I hold off on the ER until my heart is pounding out of my chest and my skull feels like it is crunching glass.
Would these be acceptable courses of actions for any other disease? No, they wouldn’t. You would think it foolish for someone else, anybody else, to wait until the last minute. It’s not so subtlely implied that this is what a person with chronic pain needs to do. It doesn’t seem to matter anymore, because those things that I do end up caving and going to the ER for, are the things that are not attended to. Not even in the slightest. Tylenol is not pain relief. Tylenol is a slap in the face. I can’t take ibuprofen or ANY form of NSAIDs, IV or shot derivatives, because I have chronic gastritis from those being the only form of pain medicine I was given for * 7 * years. I can count on 2 hands the number of full prescriptions I went through in that 7 years and that’s what meloxicam did to me. Gastritis is basically your stomach and gut completely and utterly inflamed; by default. Steroid shots trigger hyperglycemia.
The only option for me, the only thing that works is Vicodin and Percocet. These are not 4 letter words. These medicines help a person live. They help a person function at the bare minimum, like taking the garbage out, taking a shower or cooking dinner at home. They are conditioned to minimize even the worst of the worst. The very first time I had chest pain, I went to the nearest hospital and when the doctor finally decided to come in, I went through the painstaking process of re-illustrating my pain from when it started. He had a bunch of interns behind him and he said, after all of this, after all the dirty looks: “Are you sure this isn’t your fibromyalgia.”. He said it so dismissively and snidely that it was obvious he didn’t care. No. Chest pain is not a *primary* symptom of fibromyalgia. Nice try, though. I once had severe muscles in my legs. So severe that there was literally no other choice but to go to the ER. I was wheeled into the ambulance bay and wheeled into the waiting room. Yet, the nurse still said, “Are you sure you can’t walk?” Am I sure? Yeah, of course, this was just a simple Charlie horse, not spasms so severe that I tore the entire calf muscle. It’s in their tone of voice, when they say, “My name is __ I’ll be your nurse. What can I do for you?” as if we are ordering off of a menu!!!!!!
It’s in their rolled eyes, fake mannerisms, and rough exams. What can I do for you? The one thing that you won’t. Treat my acute flare up of chronic pain/organ pain. And all of this because there is no punishment in place for them. They outright get away with it. I don’t ask a lot for in this life, but being able to function at the bare minimum is a demand. So every single day, every interaction we have with any medical professional is degrading, dehumanizing, demoralizing and minimizing. So every single day, our body is TREATING us as if we’re living a lifestyle most likely to cause an actual heart attack. Chronic stress goes hand in hand with chronic pain, and every day that we’re in pain, the heart muscles become weaker and weaker. They have to work overtime to deal with the absurd amount of cortisol in our systems. How would you feel? Would you feel furious, disgusted, hopeless, sardonic? Maybe a Tylenol would help. Being denied pain medication is being denied a basic human right. And this will go down as one of the worst systemic human rights abuses of all time.
I have been in chronic intractable pain for 21 years now. I am 60 and no longer able to work. I cannot shower daily and can rarely cook. Forget doing housework on a regular basis. Twenty one years ago a surgeon’s hand jerked and he tore my appendix setting off sepsis that resulted in hyperparathyroidism resulting in severe pre menopausal osteoporosis. In the past 21 years I have had five spontaneous left leg fractures and bilateral knee replacements. I have severe right gluteal bursitis in the ischium and severe right sided piriformis syndrome resulting in part from core instability from a 3 inch leg length discrepancy resulting from multiple emergency orthopedic surgeries. I also suffer from degenerative joint disease needing surgical intervention however I am not a candidate for back surgery because of the severe osteoporosis with “holes in my bones so perfect that they could have been surgically drilled” to quote a renowned Nashville orthopedic surgeon now retired. I am in chronic intractable pain. Most night I don’t sleep for three hours in a row and I wake up throbbing but I must meter the five per day limit of pain meds that my doctor allows (2 long acting and 3 short acting) and all at the lowest doses. I am subjected to a monthly pill count and frequent urine drug test. My only crime is chronic intractable pain. I have never overdosed. I have never received but three speeding tickets and I am 60. No other “criminal” behavior., yet my life is under a spotlight. I have never abused drugs. The criminals are on the streets of Tennessee laughing for they know that your laws are punishing the wrong people. Where will people who need prescription opioids go when opioids are outlawed. Fill in the blanks. Addicts are there now .and it’s a dangerous place where opioids are laced with bad fatal substances. It scares me and I can’t see myself doing that Please help the chronic pain sufferers who go to legal clinics run by good doctors. You have the power to stop this legislative nonsense. There were ample laws on the books to punish the addicts before the “crisis” that came out of nowhere, Physicians who don’t strictly adhere to the CDC’s recommendations have a target on their backs threatening them with their licenses. God help us all. PLEASE stop punishing the patients.
I have 12 mild to broad based herniations, 2 slipped disc and 1 punctured disc from a proceedure that also punctured my dura sac. I have a reconstructed ankle and hand. I get chronic migraines which can amount to up to 15 a month. I have had cancerous polyps removed from my colonas well as spots lazered in my stomach. I have a tumor on my kidney. I am in pain 24/7 and it has been a struggle to find a doctor who can help me get any relief. My previous doctor is no longer practicing and trying to find a doctor who can replace him has been difficult. I have quite a few allergies so there is only a limited amount of medications that can lower the levels of my pain to even a 5 on a 10 pt scale. I use a tens unit, stretch and exercise as well as meditation and mindful thinking. There comes a point where a person has tried and exhausted all options besides surgery and should be able to get the proper rx to make their life comfortable. It is disheartening at times when you hear of individuals who have passed because they could not handle the pain they were in or their heart rate skyrockets because of their pain levels.
I have stage 4 Endometriosis. I have had two surgeries to remove the disease in twenty different areas. I had massive adhesions and scar tissue everywhere. My right ovary and Fallopian tube was wrapped up in a ball of adhesions and was adhered to my abdominal wall. The ovary and Fallopian tube are supposed to be suspended to allow ovulation and for the egg to travel down the Fallopian tube. So, for it to be wrapped up in a ball and adhered to my abdomin was excruciating, especially when I ovulated. I also had it deeply infiltrated in my rectum which made bowel movements excruciating. Sitting, even on the couch, was extremely painful. It felt like knives stabbing. I couldn’t hold in a bowel movement because of the excruciating pain and was house bound because of this. Ended up having a partial bowel resection.
Now, I am having severe chest, rib, and back pain. Endometriosis is suspected on my diaphragm. There is no way to confirm this without surgery. Thoracic endometriosis surgery, which is what I need to confirm diagnosis and to remove it, is incredibly expensive, specialized, and a very long and painful recovery. It will take a least a year to save up the money for the surgery. The only surgeons that specialize in this type of surgery are located in Atlanta and all insurance is considered out of network.
I was denied pain medication (opioids) to manage my pain until I can have surgery. I live in pain every single day. I am only 35 years old and I can barely care for my 4 year old son. I have lost any sense of a normal, productive life. My son has lost his mom and my husband, his wife. I can barely drive, do the laundry, or play with my son. When I do, I’m in horrible pain. I can’t take my son to the park, I can’t take him outside to play, I can hardly even put together a puzzle with him. I can’t sit up without being in horrible, increasing pain. The weight of my upper body and gravity put too much pressure on my diaphragm causing horrible pain. Endometriosis on the diaphragm can cause organs to herniate through, which may be happening. Endometriosis does not show up on any imaging, even MRI.
This is the first time that I’ve asked for pain medication to cope with the pain of my disease. And I was denied. My doctor’s response was that he would not allow me to become addicted to opioids. I have no history of addiction or even requesting pain medication. The only time I was prescribed opioids was after my surgeries for endometriosis and I never finished any of them and threw them away. Instead, my doctor said that I just need some physical therapy. I left hopeless, doomed to a life in excruciating pain that will continue to rob me of any sense of normalcy. And the worst part- not being able to care for my son. Who is going to care for him as this pain continues to worsen and my ability to function continually declines??
I am suffering, my son and husband are suffering. People who truly need these medications to function on even the most minimal level, are being punished. And not just the person in pain- but their families- their children.
I was a nurse (LPN) from the age of 18. I continued to college and became an RN. I had ruptured a few discs lifting, turning, fighting, caring for patients. At the age of 30, I went for back surgery and the surgeon cut the covering of my spinal cord. I needed 3 other surgeries to repair that. The hospital I was working at asked me to return to work ASAP as there was a nursing shortage. I returned to work using opiates because that was the only way I could get out of bed. I have had insulin dependent diabetes since the age of 6. I began to suffer the consequences of diabetes. I went through hundreds of surgeries trying to save by legs but ended up with both amputated. I actually returned to work with one amputated leg but my career ended after the second amputation. I went through all those alternatives. PT, OT, antidepressants, steroid injections, radio frequency. It took many years to find the right drug and the right dose to control my pain and allow my to live a functioning independent life. I was able to walk with my prosthetics, take care of my family, go on vacation, take care of my house. Since the forced decreased, I am back confined to my wheelchair. It hurts to move, hurts to walk. hurts to live. I am sitting here suffering waiting to die.
I’m Marty Mioni and a 63 year old chronic pain patient. I’ve had back troubles off and on since the mid 70’s, but on February 14, 2000, I ruptured my L5-S1 disc. I had surgery to remove it and ended up with scar tissue and nerve damage resulting in severe sciatic nerve pain all the way down my right leg into my toes. Also the three discs above are also bulging into the nerve root. I was advised not to have fusion surgery and learn to live with it. To put it in a nutshell, I have failed back syndrome.
I also have a thoracic neuritis left over from thoracic sympathectomy surgery, soles of my feet neuritis, two (yes both) partially torn Achilles tendons, and suffer with migraines.
For over 15 years I have tried everything including three failed spinal cord stimulator trials. The only thing that works for me which also gives me a great quality of life is opiate pain medication. I am currently being forcibly tapered off of my pain medication.
As I get less and less medication, I am scared to death that I will no longer be able to take care of myself or my husband and will be eventually bedridden. I’m also a caregiver for my husband who is on home peritoneal kidney dialysis along with many complications he has from suffering with type two diabetes for over 30 years.
For over seven years and up until February 2018 I was also a caregiver for my 97 year old Mom with dementia. I had to move her out to go live with my brother because with less medication I couldn’t take care of her any longer. I miss her terribly and consider it totally unfair that she was uprooted out of her home.
My daughter Karen is 38 years old and was diagnosed with X-linked Hyphophatemia (XLH) at age 2 at Yale New Haven Hospital. An XLH person’s kidneys do not properly handle vitamin D and phosphorus, the kidneys treat phosphorus as a waste product and not return enough of it to the circulation for use by bones and teeth causing the bone disorder often called Rickets because the bones soften and the legs bow. There are approximately 16,000 people in the US with this disease, 180 in the state of Connecticut and 47 in Fairfield County.
Karen’s childhood was relatively uneventful; she wore leg braces at night to straighten her legs, took medicine multiple times per day, went to school, played with friends and was happy. In her late 20s it all changed, the pain started and didn’t stop. She tried everything to deal with pain, acupuncture, guided meditation, bee venom therapy, NSAIDS, nothing worked until her doctor put her on steroids. Steroids were a miracle, stopped the pain and after two months her kidneys stopped working. Miracle over. Her kidneys came back, but so did the pain. The only thing left were narcotics – a very imperfect treatment for chronic pain but for her and many people, the only one. She goes to a pain clinic that drug tests her every visit, she follows directions to the letter and yet she is treated like a criminal, and recently was given NARCAN during an office visit. Apparently this is how our governments chooses to think about chronic pain.
Karen graduated from Purdue University with a 3.83 GPA, traveled the world thanks to her profession, is a Grammy voter, was voted the #1 Music Promoter in Chicago in both 2013 and 2014, she is a stage manager at Lollapalooza and other very high-profile music festivals. All of this has been shut down because of pain. It has cost her everything, jobs, independence, relationships, children.
Karen is more than pain but, every day, pain takes away more of her spirit, independence, personality, and her tenacity.
Please help her by seeing chronic pain as a medical problem and not social one.
I have had Reflex Sympathetic Dystrophy, now referred to as Chronic Regional Pain Syndrome, for 18 years. The RSD was diagnosed six months after I picked up a box of books, turned to place the box on a table, and my left knee “popped”. My left leg swelled up to the size of an elephant’s leg but the doctor’s couldn’t find “anything wrong”. I’ve had arthroscopic surgery, every MRI, PET, CT, or other scan known to mankind, injections, meds, physical therapy, biofeedback, talk therapy, aquatic therapy…I’ve tried most everything. I spent 14 months in bed, unable to work and missing out on my family activities (our kids were 10 and 13 years old) because my left leg and foot were swollen/black/toes curled under/too painful for even a bedsheet to touch, let alone a sock or shoe. I was forced back to work and have been able to work (most days) for the past 16+ years. I have seen pain management doctors under orders from the state Workers Comp system and have always done everything they have told me to do, never asked for more meds, always passed every drug screen test, never missed an appointment, never “lost” or “came up short” with my meds (fentanyl patch), etc. I have been told by my doctors (I say doctors (plural) because one doctor retired to care for his wife who had dementia, one doctor sees me only for my spinal cord stimulator, and the other doctor prescribes my meds) that I am a model patient. Never any big issues, always cooperative and compliant, always clean drug screens, and I don’t scream/throw fits of anger at my appointments. I am able to function (most days), do some chores around the house, interact with my family, attend social events, and have a fairly “normal” semblance of life.
At my regular monthly appointment in July, I am told that I will no longer be able to have the fentanyl patches prescribed to me each month due to the changes in the law because of the “opioid crisis”. I am being forced to stop taking a medication that I don’t abuse, allows me to function/work/pay taxes, and that is carefully monitored by my doctor who, by the way, doesn’t over prescribe, doesn’t have overdosing patients, and has me sign a contract regarding my conduct and interaction with his office. But I, and many other chronic pain patients who live with excruciating pain 24/7/365 that most people would not be able to withstand, are being lumped in with the abusers/fakers/dealers to “stop the opioid crisis”. I would bet my last dollar that the people who made this decision to stop each and every person taking opioids of any kind, have NEVER experienced chronic pain. Stubbing your big toe, cutting your finger, or even breaking a bone is probably the most pain they have ever experienced. Pain, in most instances, goes away after the instigating factor/issue, but not in all cases, but for those of us where the pain has NOT gone away EVER, we are being punished and forced back to our beds to become unable to work/participate in family events/make love to our spouses because EVERYONE who has prescription opioids abuses them and MUST be stopped. I don’t know when these people became medical professionals to make these decisions that affect my personal health, which in turn, affects my husband, family, and friends.
Alternatives to opioids such as therapeutic medical massage or medical marijuana are not “allowed” yet neither involve opioids. I was told by my pain management doctor today that, in Oklahoma, where medical marijuana was just approved, even if I just APPLY for a medical marijuana card, my name will be put on a “list” that will, in turn, kick me out of the services of my pain management doctor as I titrate off of the fentanyl. I can’t even TRY the medical marijuana to see if it MIGHT work for me for the ENTIRE two years of the medical marijuana card…even if I NEVER purchase ANY marijuana.
We have Individual Education Plans (IEP) in schools for students to help them be successful in their education. How about Individual Healthcare Plans (IHP) for chronic pain patients to help them be successful in their pain management in order to have a productive life? I don’t want to go backwards. I want to be able to be a wife, mother, daughter caring for aging parents, employee, grandma, and friend to others–not a body curled up in the fetal position in a dark room screaming for relief.
Please. Please. Please. Listen to EACH of us. We EACH have a different story with a common thread–.the pain we didn’t ask for in the first place.
Don’t punish pain.
I am a 40 year old female that has been dealing with chronic pain for 11 years now. My pain started with a bullet wound to the spinal column. I sustained long lasting injuries that caused paralysis and severe nerve pain. I just recently lost my left leg due to sepsis. I was given oral and injections of steroids to take to help calm the inflamed nerves but it seemed to have driven my immunity down and I believe ultimately caused me to become septic with my 1 year old knee replacement. If I were able to get the proper pain relief I was previously getting in my state, I would not have had to fly to another state and get on a medication regimen that was ultimately not right for me. After having 8 surgeries this past year, I was left with being offered a dose of pain meds that I’ve become tolerant and that no longer covers the pain. I’ve been left with having no other option but to seek care in a Suboxone clinic receiving Suboxone for pain and medical marijuana. So far it’s working, however I am now deemed an addict because I take a med that is used for addiction. Going back to pain meds in the future or for surgery/post surgery may become my worst nightmare. There is more help available for addicts than there is for chronic pain. There are no pain clinics to go to with proper help for complicated patients such as myself. We have to resort to going the addict route. If I’m an addict so be it, no shame in getting help. But I’m a chronic pain patient with a complicated history and that’s the only route I had to choose from. Perhaps we need to fill in the blank for this population and provide more help and support. Also, let’s throw more money into research and find better ways to treat pain and make that available to middle class people with high copays.
Hi , I am 55 yrs old & have had Complex Regional Pain for the last 15 yrs. My entire left leg, both feet & right calf never stop hurting. CRPS is best described to me as wrapping your leg is barbed wire, running electricity through it to jolt your muscles then either set it on fire or bury it in a snow bank for hours ( depending if your limbs burn hot or cold). Mine will alternate or do both at the same time. Then have this happening 24 hours a day non stop for 15 yrs. Living in chronic pain for the last 15 yrs has been my own personal hell. I rarely show it or complain about it in a way that really shows what I’m dealing with. I can no longer work & spend most of my time on my couch. I try to fight through the pain but it is diffcult. A trip to grocery store means chest pains from the pain before I leave the store & hours of extreme pain afterwards. My house is dirtier than it should be as simple cleaning takes hours. I have learned not to look. Some days it is all I can do to just feed myself & my animals. I live for my good days where I can take my dogs for a short walk to a local park but those are few & far between. It’s a struggle but what isn’t with this diease. I spend most of my time alone because people stop asking you to do anything when you always say no & I am too embrassed by my messy home to invite people over, not that anyone wants to come. It ironic, I don’t complain or talk about my medical issues but everyone tells me theirs like that is all I’m capable of talking about. I was lucky for many years and had good pain relief . I have done spinal injections, bier blocks, & tried a spinal cord stimulator to try to find some relief. Some helped, some didn’t but all stop working about 8 yrs ago. I have been told by numerous pain specialist that medication is my only option now but so sorry, we don’t prescribe pain meds so we won’t take you as a patient since we can’t treat you. When the so called opiate crisis first started, I was advised that when my high dose morphine stopped working, I should be rotated back to OxyContin again as my dose could be lowered by these pain specialists. My Gp however did not feel comfortable changing my meds to OxyContin because of all the abuse. So my pain reduction was reduced since I had built up a tolerance. Then in 2017, a misdiagnoses by the local ER caused my pain medication to be reduced by over 3/4 and my quality life became a joke. An exacerbation of my COPD was misdiagnosed as an overdose upon learning I took morphine- even though the symptoms are similar & this same hospital had diagnosed me a COPD trigger patient one month prior. I was treated with 4 doses of Narcan which did nothing to help me – but you hear about addicts found almost dead sitting up after one dose. My Dr who was growing uncomfortable prescribing pain meds used it as an excuse to do a rapid withdrawal of my pain meds with nothing given to help with the withdrawal symptoms both in & out of the hospital. I felt as he broke trust with me & how could I ever trust him to take care of me if he didn’t believe me. I only remembered taking one dose of medication that day & when my daughter counted my pills, the count matched that. I hadn’t accidentally OD!!! I couldn’t stay under the care of a Dr that treated me like a liar. I was lucky enough to find another Dr who would help me with my pain but at a much lower dose- partly because of my COPD & partly because he is scared to prescribe any more than the new guidelines. So now I live in more pain & my struggle to have any type of life is almost to great to handle. I try to remain hopeful but it’s damn hard. Its hard to be treated like a druggie by hospital staff that know nothing about my disease & don’t bother to Find out. I get very angry that I am made to suffer because of other people wanting to get high. Real pain patients don’t get high off their medications, they get some measure of relief. I get scared that one day I will lose what little bit of relief I have now & receive nothing for my pain. I don’t know if I could it handle it. I worry about the strain the pain puts on my body especially my heart since I have already had one heart attack. I don’t understand why I am being punished because of the actions of others. What ever happened to helping patients in need???
I’ve been a chronic pain patient for 15+ years.
In March my insurance company denied my normal dose of pain medicine.
My pain clinic did everything they could, but i still ended up with 2/3 reduction, without tapering.
My world flipped upside down, I had horrible pain, and anxiety. I was so scared what my life would be like, and if would be able to continue to work.
I had little to no social life before my meds were cut, now my life consists of not leaving my home more than a couple times a week.
Living with constant pain has destroyed the person I used to be, I grieve for the life I used to live. My pain prevents me from eating properly, sleeping properly, spending time with friends and lived ones.
Sometimes, if I’m lucky, I can get somewhat comfortable, if I lay on the couch, with my ice pack/heating pad, and tens unit.
But that’s the ONLY time my pain is manageable.
Think about it….this is what I have to look forward to,..at the end of the day…..hopefully getting some relief, but I am never completely free of pain.
I used to have some good days, mixed in with the bad days. But now, there aren’t any good days. They all blend together, without hope and in constant pain.
Why? I followed the rules, didn’t abuse my meds, I submitted to random urinalysis, pill counts, and tried every non opioid therapy offered to me.
I am chemically dependant on pain medicine, but I AM NOT AN ADDICT!! ADDICTION is a BEHAVIORAL ISSUE!
Pain is not a crime, but we are being treated like criminals!
Addicts take drugs to DESTROY function,
Chronic Pain Patients take meds to RESTORE function, and have some sort of quality of life.
The difference between the two is that Addicts will ALWAYS find a way to get what they want, through any means!
CPPs are suffering, without an alternative.
I was born with mutated DNA that causes all my colagen to be defective and too much elasticity in all my soft tissue. Ths disorder is called Ehlers-Danlos Syndrome. While I had symptoms showing at birth (a hole in my heart and a heart murmur), it took 35 years for a doctor to make a diagnosis. I dont blame the doctors. Being extremely limber (without physical training), Scoliosis, chronic joint dislocations since age 3, random then chronic back pain, headaches, easy bruising, spider veins at 18, severe high blood pressure starting at 18, chronic joint pain, and disc herniations didnt seem to be all connected. I didnt see the connection so I didnt complain often.
EDS Hypermobility affects 1 in 5,000-10,000 people and is considered rare. Doctors learn a paragraphs worth of information and rarely see a patient with a prior diagnosis. Even after my first discetomy/fusion at age 34, no bells were ringing. It took a knowledgable physical therapist to notice, an orthopedic surgeon who agreed, a pediatric geneticist who specializes in connective tissue disorders, and a year of information and testing to get to a diagnosis. I thought that meant I would be taken seriously. For the most part, I have… except for the state of Tennessee who knows nothing about me, what kind of pain I live with every day, or how to medically treat me. Yet, these government officials and representatives (along with the “help” of the DEA, FDA, and CDC) have determined that my daily, chronic joint pain isnt worthy enough to be treated properly with care and compasion. I dont have an “end of life disease” like cancer so according to the guidelines that means anything over 120 mme is ineffective and making me an addict. I am most definately not addicted.
Ehlers-Danlos syndrome has caused all my soft tissue to be so fragile, my defective colagen affects every part of my body…
Carefully placed operative suturs rip right though my ligaments and tendons.
I severely tear ligaments in my sleep.
All of my spinal discs are so soft and pliable, most have problems holding fluid. My discs arent strong enough to support my vertebrae. Instead of waiting for more discs to herniate after 2 lumbar fusions, my surgeon placed brackets on every lumbar vertebrae and long rods on both sides, running the length of my lumbar spine in order to give my vertebrae the support my discs couldnt provide.
My SI joints were dislocating and locking out of place several times a day. This is extremely painful since these joints are basically shock obsorbers and are not supposed to move in this manor. The surgeon had these joints stabilized by placing long screws through my sacrum to hold them in place. The lack of shock absorption now causes constant daily inflammation and pain but still preferrable to the pain i was having before.
My tailbone was dislocating and locking in a 90 degree angle everytime i sat down. The pain and pressure caused by standing up was almost unbearable. My tailbone has been removed.
When I walk, my hips will subluxate so I walk with a cane to keep from falling.
When I sleep, my hips subluxate from the pressure of the weight of my body from sleeping on one hip while at the same time, the other hip subluxates from gravity pulling it forward and down. I cant sleep on my stomach or back due to lumbar pain. I wake up every 20-30 minutes to change positions due to the pain from my hips being out of place.
It takes me 2 hours to get out of bed every morning due to inflammation and pain in the same joints that keep me from sleeping.
I was a senior graphic desinger at a job I loved and worked for 10 years. I couldnt sit in my chair all day due to the pain. I couldnt use my mouse and kryboard due to arthritis in my hands and wrist pain. I couldnt look at a computer all day due to neck pain (and resulting migraines) since my neck doesnt have a natural curve.
I have been on disability since 2009. At the time, I was in the process of starting 6 surgeries over a 6 month period. There was no perceived end to my recovery. My surgeon believed I would be wheelchair bound within 5 years based on the progression of my disc degeneration and my joint pain. I had been on pain mamagement since my first back surgery 5 years prior. At the time, my pain managemt allowed me to continue working until the joint dislocations and back pain warranted the remaining surgeries. I had also had shoulder sugery 2 years prior to repair 2 torn ligaments but they were tearing again. Following the surgeries in 2009/2010 with much discussion, my pain specialist and I agreed to increase my level of pain meds to make my pain more managable. I am still on that same dosage and medication with no more increases. While the increase did not allow me the ability to go back to work, it does give me the ability to get out if bed each morning, to do some minimal things around the house each week, to be a somewhat functional part of my family. These meds have allowed me to have a quality of life that I didnt expect to have 8 years later. They have kept me from being wheelchair bound with the exception of extended walking or standing. I continue to live every day with pain that would put most people out of commission but for me, its managable BECAUSE of the opioids i take.
My doctor and I have fought to keep my meds at the current levels. I spent 2 years driving from phamacy to pharmacy because none of them wanted to carry the meds due to possible theft. When the state changed its laws allowing the pharmacist to deny filling legal prescriptions of 120 mme or above based on the number of prescribing doctors and/or number of pharmacies, the laws were supposed to be geared towards patients seeing GPs or internists. Anyone seeing a PM specialist was “supposed” to be exempt from the 120 mme restriction but the pharmacists didnt read the laws the way they were written. I was “blacklisted” meaning a notation was added to my statewide prescibing information alerting other pharmacists to not fill my precriptions based on my dosage and because my dr APPROVED me to get my prescriptions filled at whatever pharmacy carried my meds each month since “only getting prescriptions filled at one approved pharmacy” was a CDC guideline, not a requirement. Everytime new guidelines come out or new state laws are implemented, Im threatened with having to reduce my dosage. I have spent weeks without my meds because new laws have allowed insurance companies to provide employeers with reduced premiums for policies that restrict daily dosage or opioids all together. I have spent days and weeks without my meds because the pharmacies are very limited in the amounts of pills they can order so they dont have enough to fill all their patients prescriptions. Not only do I have to immediately stop taking my meds which can be extremely dangerous but my pain levels increase to the point that i cant get out of bed. It hurts too much to move or walk. Gravity puts too much pressure on my joints.
Most states are implementing Medical marajuana policies but not everyone can use MMJ and some people just arent willing to go that route. Either way, MMJ is NOT the answer to this problem. It should be used as an additional option but not in place of opioid use for chronic pain.
I may not have a disorder that will cost me my life but my chronic daily pain will make me feel that way if i have to reduce my dosage by 75% as is suggested in the guidelines. My pain is just as valid and just as legitimate as anyone having pain due to “end of life” illnesses. Patients in chronic, not end of life pain need to be included with the exemptions.
I’ve had facial pain from breaking my nose 20 years ago. (Intractable pain) It has ranged from a dull ache to mind snapping. I had an incredible flare again this year. I went to the ER and they barbarically sent me away. I begged my primary for help, and she yelled at me. I went to another dr who accused me of being a mental patient and said that I asked my dr for “drugs”. I actually asked for help, but obviously modern medicine is moving backwards. I hate this.
Ive had severe chronic pain from previous back surgery (failed) 4 bulging discs, Rheumatoid arthritis, osteoarthritis migraines, and fibromyalgia. Ive been on fentanyl patches and norco for 12 years. I go to a pain clinic and have signed the pain contract and am regularly tested for drugs etc. I have never abused my medications.
At may last pain clinic visit my doctor decided to cut my fentanyl patch in half. I told him Ive been on the same dose for 12 years and now I am getting cut? He said yes. No explanation but I know it is because the government pressure from the opioid crisis.
I know if I am being affected that many others are too. This is so wrong. We need a voice as we are the ones being hurt by the way the government is doing things. I mean what is up with putting pain patients in the same category as street heroin users?
I suffered for 25 + years with a deteriorated hip finally had surgery, luckily just before all this hullabaloo about pain medicine. They might as well practice medicine with hands tied behind their back. I was one of the lucky ones. The horror stories abound. Scotty(Scotty’s World)
I have been in pain since cancer in 2000, after a auto accident moving to ky. been on pain management for 18 years, always been complying with form, urine, pill count. now can barely get out of bed. new dr wants to stop medication that works. Found out they give this medication to addicts but wont give for chronic pain. I have worked pay taxes tried to live a normal life now im 65. can barely get around
On disability after 40 yr nursing career due to fibomyalgia and polymyalgia rhuematica. Dr allowed me 30 hydrocodone 325/5 for 30 days and I rarely refilled them more than every 3 months instead of monthly. Went in one day a fewcweeksxago and he had his nurse inform me he would no longer prescribe them or treat me for pain, no explanation, no professional courtesy, nothing. She gave me names of 3 “pain management specialists” with not one word about anything. I picked a name out of anger at the disrespect I was shown and the only thing she will do is steroid injections requiring anesthesia. CT showed 5 vertbrae deteriorated and pressing on nerves-let her do both sides and relief lasted 6 weeks. Right back where I started and she only offers the same injections again in 3 months, no pain med AT ALL, pain parch with Nsaid on in which I am allergic toand nerve injections in her office. I am subjected each visit to a personal questinaire about how much I thi k about pain meds, do I take anyone else’s, do I go to ER trying to get meds- on and on! Then have to give a urine sample every e months!!!!!!I am 69 years old, take care of a disabled husband and keep 3 grandchildren. I have no help as husband cannot do anything. I am a christian who has NEVER ABUSED ANY MEDICATION-and I am totally humiliated every time I go to her office. It’s shabby-she taljs so loud people can hear her, talks over me and belittles every response I give! I did not ask for these conditions-I DO NOT DESERVE TO BE TREATED SO BADLY, HUMILIATED AND EMBARRASSED BY NEEDING HELP! She has no compassion-has lomited medical knowledge about my atrial fib-says none of her procedures will effect it which is a LIE! INSAIDS escalate my atrial fib! She is just making quick easy money off of people with chronic conditions. Every person in that waiting room sits on broken chairs, miserable with their heads down and avoiding each other. They appear ashamed and hopeless as she makes me feel!
I was in a car accident and for 17 years I have had severe pain. I am on the lowest opiods the Dr. will give me. Now arthirits has set in my spine deforming it. I have stenosis up and down my spine, bad discs, bone spurs ,pinched nerves and muscle spasums. And pain down my arms and legs plus numbness. Headaches and frbomalagia. Burning in lower back that feels like a hot iron inside. Please don’t let me suffer.
I am a 66 year old man that has been suffering with genetic pancreatitis and a syndrome that has been slowly eating away at my healthy pancreas tissue for 30 years. Five years ago my daily chronic pancreatitis pain became so debilitating and the associated acute attacks became more frequent that I was forced into a pain management routine consisting of daily doses of opiates and a hospital visit every 3-4 months for an ERCP procedure consisting of cleaning out as much of the dead tissue they dared and installed stints in my bile ducts to aid the flow of necessary bile to aid digestion. I have had 28 hospital visits, accompanied with 22 medical procedures in the past five years to treat my condition.
When the Opiod crisis became a National crisis and a huge buzz word in politics the Florida State legislature passed HB21 with an enforcement date of July 1, 2018, just to secure votes for reelection. This incredably ignorant legislation was based on the misinformation and data provided by the CDC and the media that has now left many of us Seniors to suffer in constant pain due to the new law causing Doctor’s fears the CDC, FDA, or the DEA is going to close down their practice if they provide us with our necessary medication. My quality of life has gone from a manageable 8-9 to a 0, wherein I am bedridden almost every day for the rest of my shortened life. I need help, not only for me and my pain, but also help get the message out that less then 18,000 Americans died last year from prescription opiates not the 240,000 the CDC originally reported when they lumped our illnesses with that of heroin drug addicts. It took a year of traveling the country meeting with the top medical professionals in the gastrointernal field of medicine, I have tried practicing every alternative medicine known to man, unfortunately with limited success. After exhausting all available alternatives I have had to accept that medication, is the only available option to manage my pain. years through 22 surgeries and
I suffer from Primary Progressive Multiple Sclerosis – diagnosed 17 March 2018. My most prominent symptom is uncontrollable pain in multiple areas of my body. I feel like an ice pick is jammed between my shoulder blades 24/7. I also have a constant, throbbing pain in my hands and feet. Additionally, I get sporadic pains in all of my major muscles and joints. All of these cause a never-ending, unpredictable set of body pains that no treatment seems to help, with the exception of prescription opioids. I have been told that medicinal marijuana may be highly beneficial for me. That’s great, except I live in a state that it is not yet legal and I am also in the military – the security clearances required by my job does not allow for that as an option. Therefore, I require opioids. I started with small dosages, but as my disease progressed (both pre-diagnosis and after), I required higher dosages just to function.
I started with a pain doctor and pain contract. I soon found that this doctor felt constrained by law in what medicines he could prescribe and the doses he could give – he kept me at a dose rate. This doctor would not increase the dose and verbalized his fear of prescribing me more – not a fear of what might happen to me (addiction or dependency), but a fear of the trouble he could get into for giving me more, even though it was clear a higher dose was required to meet my needs. I ended up having to part ways with this doctor.
I went to my new PCM in Internal Medicine. Lucky for me, her college roommate had MS and she was very familiar with how much pain this disease can cause. This doctor allowed me to “experiment” with how much Percocet I took, both in number of pills taken at a time and total numbers per day. She prescribed me a higher dose rate, which I often need. There are other days where fewer pills provide me enough relief to function and that is what I take. Every doctor needs to be like this! The biggest problem is her upper management, who are concerned with her management of my pain and are applying pressure on her to get me off opiates. They are not concerned with what works to relieve my pain…thy are concerned with the impression my care is giving to outsiders looking at their practice.
MS is not my only issue causing pain. I also ejected from an F-15 in 2003 and compressed/damaged at least 7 vertebrae. I had an L5/S1 fusion in 2009 that solved a majority of my lower back pain. However, the damage to my cervical and thoracic areas has caused significant pain. Doctors have tried injections (trigger pt and steroids), RF treatments and epidurals…all to no avail. Once again, opiates were the only thing that helped relieve that pain, but my doctor and the Air Force were not willing to make that a long-term treatment option. Combining this with PPMS, I need opiates to function on a daily basis.
In 2003 I hurt neck by being under to much stress at work. Working at a computer answering a multiline phone and doing 2 other co-workers jobs out for the holidays for 2 weeks. It started as a stiff neck and ended up being 2 herniated disc. Worked on pain meds for 10 months and made it worse. Tore,ripped and had holes in the muscle over my upper back. Had surgery which i still had pain and returned to work 3 months later, Had been back on job 3 weeks and slipped on water and fell backwards. Messed up my meck up again. After that the inflammation was horrific. Went out on disability. Pain never went away. Been living with chronic pain for 15 years and they just keep lowering my pain medications. Now i have bulging disc all down my spine and also diagnosed with Rhuematoid Arthritis. The ppl abusing medications has made it to where we are getting punished from the stronger medications we need……😡
My doctor was recently “divorced” from the medical group he’s been a partner with for 2 1/2 years. They immediately engaged a sociopathic “addiction” psychologist. In our first meeting she barely asked my name, never asked me about my pain but instead stated by calling me a drug addict. When I argued back she asked me if I was always so.”hostile”
Since then, three weeks ago, my prescription has been halved and I’ve been left in withdrawal pain as well as the pain i was having before! Just a week ago I underwent an emg, which was being done by my regular neurologist as part of my proactive plan to finally find the reason for my pain and get treatment.
It showed multiple levels of serious k nerve damage in my back,.where I’ve already had two successful surgeries, including s fusion.
Nearly three years ago I was felled by a neurological disease which has left me physically disabled and unable to walk without assistance of a cane, walker and braces. If not for my 76 year old Mum, a twice over cancer survivor, I’d likely be in long term care, with l little hope.
Now I’m suffering from pain that the Dr assigned to me at this same practice, cannot prescribe narcotics, but he inferred great dismay in what was happening to me, quickly saying “first do no harm” just as the psychologist entered the closed exam room, giving a quick knock concurrently. He then coward back away from me as the woman did so. However, I had picked up my cell s and placed a call to my mother-hero who was on the waiting room. Normally a gentle great grandmother, she transformed into a she bear and engaged the woman, telling her to back off. The doctor then left himself, to get me a cup of water. He and mom arrived back art the same time, saying to me that it was time to leave.
Since then I’ve not seen an MD, other than my neurologist, who, by stated policy, does not prescribe narcotics, leaving it to the PCP. Instead they’ve had covering physicians determining my medication needs.
They are trending me down by removing one of the pills a day, once a week. Three weeks ago my pain was liveable at 10-12 tablets. Yesterday they gave me a 7 day supply, 6 per day.
To obtain this, I have to present myself at their office ON THE DAY THAT I AM OUT AND WHICH I SHOULD’VE BEEN. No earlier or later than 4:30. They are in Andover. We are in Melrose. My license wss surrendered to RMV after receiving a HP placard. Because the day I go may vary, I cannot use Mass Health vehicle service or The Ride. My only option is to have Mom drive me.
Then when I arrive, I’m treated like cancer. I’m given a cup and told to make sure to be quick so they can leave on time at 5pm. It’s humiliating. I cannot successfully utilize a cup but instead I need the plastic “hat”. Then I have to get it into the cup, all while shaking from the fear of running into the psychologist. I do refuse to carry it outside the bathroom, retaining a small degree of humility.
Tomorrow I’m seen by a Dr at BIDMC’s pain clinic, an appt I again proactively made. My regular PCP and I agreed to wait to make this appt, and also engage in aquatic therapy, until I was seen by the BIDMC neurologist. (I had an appt for the pt but it fell on the first instance of being demanded to go to the office. They didn’t care that to do so meant canceling the pt. “Not if you want your pain drugs”
Who says such a thing to a human being? Someone who has given their complete trust to?
I’m in the process now to locate another PCP. Any hope for a return to liveable pain will depend on this new yet unknown, physician. Since this practice is under the auspices of BIDMC, and I have heard through the patient grapevine that she is working for all of their.physician groups to reduce or remove the prescribing of any/all narcotics.
It’s going to be s challenge.as I cannot concurrently lose all of my most trusted Beth Israel specialists.
In the interim, I do have an appt with the other doctor, related to non pain medical issues. But I intend to try again for a closed door confidential meeting with him.
I feel lost. Humiliated. Defeated. Abused. All by those I entrusted with my medical care. Gone is the compassionate care. The promise to relieve my pain & suffering. Now I’m faced with doctors who’s actions are deliberately CAUSING my pain and creating anxieties that were not there before.
I’m an introvert by nature. I have many causes I support but not one I’d attend a rally in support of. But I’ll be with you!
I was always healthy and happy until 2001, it was then that I was in a car accident that caused me to develop Central Pain Syndrome in both my legs. Central Pain Syndrome is from my brain misfiring saying that my legs are in pain, I suffer from throbbing, burning, freezer burn type pain, aching and feeling like my legs aren’t getting circulation from my blood and every year my pain increases. I was forced to go to bed 24/7 because walking, sitting with my legs hanging down, weather changes and stress make my pain have flare ups. When I found a doctor who diagnosed me and tried every kind of treatment and injections, acupuncture, chiropractic, physical therapy, tapping, mindful thinking, virtual reality, counseling, herbs, anti seizure medications and bio feedback, to find the only thing that helped me was my pain medications. With pain medications, I was able to babysit my grandchildren and do light housework, do crafts and have a few hours to enjoy life. Today with the War On Pain Patients, I am back in bed 24/7 with mind boggling crippling throbbing pain and I am no longer able to babysit or do anything other than force myself to go to my Pain Management Clinic to get my pain medications, which have been lowered so low that I can only stay in bed and still have a lot of pain, without them, I feel I would be dead as my pain is so high that I believe I would have a heart-attack or stroke or die from suicide. I wish I could touch people so that they could feel how bad I hurt, if they felt it then they would never ever let me suffer so much knowing that opioids can give me relief and let me have some enjoyment in life. I have a high tolerance to pain so when I tell you that it is bad, then it is bad, very very bad. Please if you read my letter please stop the insanity with further tapering or stopping my life saving medications, if and when someone develops something else that works like my pain medications, then I will gladly stop using them, but as of today nothing has helped me. Please I could be your daughter, sister, mother, aunt or friend, how would you feel if they were dropped of their life saving medications? Please do the right thing, we who are in real pain have no problem having our pills counted or taking urinalysis test because we have nothing to hide, the only thing we have is Chronic Pain.
My name is Laurie Lowell,
I was put on Pain Med’s in 2015 . I started out at 2 a day. Following Year I went to 4 a day. It Managed the pain some what. I have a Tumor on the L4L5 which affects my Legs and lower spine. I had a MRI in 2017. Then my Doctor Retired because of the New Law’s in Dispensing Pain Med’s. I continued with a New Doctor for about 8 months, when she Abruptly with NO Warning dropped me off my Medication. Due to the ” FEAR ” of loosing her Medical License. I was Devastated. I went right into With Drawls . She took every one off Med’s. I have had to leave my Job, go on S.S.I and Disability because of the CDC, DEA Clamp Down. I’m not a Addictive person at all. I have always taken what was Prescribed. Why do Responsible People have to Pay the Price for those that Abuse Drugs. Do NOT put us Pain patients in a Category of Heroine, or Fentanyl.. WE ARE NOT DRUG ADDICTS..
My name is Suzanne. I have two very painful forms of arthritis and associated neuropathy. I have been on pain management for more than a decade. I began a program of pain management using, among other modalities, opioid medications when it became clear that I wouldn’t be able to continue working and supporting myself because of excruciating pain related to arthritis and nerve pain. I had reached the point that I was often unable to complete a full days’ work because of unbearable pain. Even with the medications I ended up using a wheelchair for nearly 5 years because walking was simply too painful to tolerate.
I have signed a contract with my doctor to obtain my treatment. The contract requires that I take periodic urinalysis, fill my prescriptions at only one pharmacy, refrain from consuming alcohol, not accept opioid prescriptions from another physician without contacting my doctor and, of course, not exceed prescribed doses. In addition to opioids I have and still use at times NSAIDS, PT, heat and cold applications, TENS, topical pain meds, oral steroids, IV steroid infusions, joint injections, massage therapy, hydrotherapy and rest. Because of pain management I was able to continue to work and support myself until I retired at 65.
Once I reached a dose that gave me enough relief to get through the day I have not experienced tolerance or a need to increase my doses. In fact, I have adjusted my levels down since I retired. Although I am rarely pain-free (never was really my aim) my pain is often at a tolerable, background annoyance level.
With the recent intense focus on the “opioid crisis”, which in reality is an addiction and overdose crisis people like me are facing a reality of returning to a tortured existence despite the fact that I and many like me have followed our treatment plans precisely. We are not the ones overdosing. While I don’t ever expect to be pain free I and the thousands like me deserve to live a tolerable life. I personally feel that we are the low-hanging fruit. In the information age we are easily identifiable. Regulators and elected officials focus their efforts on us, can say they are doing something about the problem. Unfortunately it is not addressing the problem. Opioid prescriptions have decreased in the last few days but overdose deaths have continued to grow at an alarming rate.
CRPS (Chronic Regional Pain Syndrome) has robbed me of my life. I had undiagnosed osteoporosis and broke my foot 4 times/and my ankle once, and I was put into a cast for approximately a year. When the cast finally came off, my central and peripheral neurological system still had the pain. No cure, it’s called the “suicide” disease because of the pain that is unbearable. But, I’m blessed with a Dr. that still takes care of me, I don’t abuse my medications, but I am able to live a limited partial life, exhausted most of the time, as pain is exhausting. I don’t understand how a government agency can lie about how many people have died from illegal narcotics, with the agenda of making themselves rich by offering programs to fix people that cannot be fixed. Pain patients cannot be made whole, only be made a little more comfortable. A lot more people are affected by nicotine and alcohol and other things they chose to use, but true pain patients just trying to have a life that so many others can take for granted. Please listen to us, chronic pain is not something we chose, it chose us, so please help us to have some quality to our lives. We are not the trouble, abusers will continue to abuse something. Let our Doctors take care of their patients, and keep government out.
I am a 55 year old woman on SSDI for 22 years. I am on daily pain meds that recently have been rapidly decreased over the last 2 months leaving me in excruciating pain, depressed and suicidal. Even on my highest level of pain meds I could barely function, but it was enough to get me to Dr’s appointments.
I suffer from the following:
Sarcoidosis
Fibromyalgia
Hypothyroidism
Arnold Chiari Malformation
Severe Osteoporosis
(broke back 3x from minor falls)
Osteopenia
Macular Degeneration
Insomnia
Severe Depression
Recent Tibial Plateau Fracture
(and knee replacement)
PTSD
(horrific sexual abuse, rapes as child)
Brain surgeries
(2x subdural hematomas, spntaneous)
Degenerative Disc Disease
Herniated Discs
Sleep Apnea
Radiculopathy
and all the symptoms and pain that go hand in hand with these issues.
I spend 90% of my day in bed. I have no quality of life. I have only one friend left. I can’t cook, care for my husband, house, or my 2 5lb dogs. I chose not to have children because of my medical issues.
I have never abused my pain meds, never taken more than was prescribed, never used alcohol with meds, or dr shopped. I submit to urine testing with no issues for 14 years. I get different types of shots in my back for pain as well.
So, why am I and other people with Chronic Pain and responsible attitudes towards the use of pain meds suffering due to manditory decreases? Can someone answer that? Why are our lives not worth anything? Suicide is always an option for anyone, but should not be an option for pain management!!!
I have undergone my 8th Major Surgey since 201, I have been diagnosed with Several Chronic Conditions that cause pain. Ive been cut off and mistreated and turned away when I was even bleeding internally its so bad. But yet meds are still easier to get On the Streets! Ive suffered too long nit to do something here and let my voice be heard. We needbto be putting these meds in the proper hands and maybe, just maybe we’ll get somewhere.
I was in a really bad boating accident in 2001…I was caught in the boat propeller and the propeller actually had to be removed from the boat still stuck in my femur bone and be surgically removed. A long with muscle flaps skin graphs a metal rod and plate with 15 screws that will always be a part of me. I was in the hospital for over a month. I almost lost my live and my leg …luckily I’m still here! I struggle daily with pain. Ill never be “normal” again. Ill never get to live a life thags full and successful..instead I dread waking up just to know ill suffer with pain I can’t control..ita not fair to me or my kids that I have people trying to tell us who suffer daily that we are all addicts…which is so far from the truth. Until they walk in out shoes they shouldn’t be allowed to take away our right to live a life with manageable pain so that we may also be a part of society that works and live a normal lives…well that’s all we want to and if taking pain medicine is what we must do then leave us alone so that we may live fulfilled lives like everyone else! My story also made the news and newspaper.
I’m 57 years old and was an active photographer with a long time career working for Walt Disney Imagineering – 35 years of service. Breast cancer – high grade diagnosed in June 2015. I had a bilateral mastectomy as my cancer had a 35 percent reoccurrence rate and also went through chemo and radiation. The surgeons promised me all great things. Except they did not inform me that there was two resident surgeons fresh out of medical school and a 3 year resident surgeons who did my bilateral mastectomy and lymphnodes removed in record time of 93 minutes. Seems I was the last person in surgery and dinner engagement was more important than I. Promptly done at 5:34pm. I woke up in excruciating pain and told to suck it up. I was beside myself vomiting from pain abdcasked what happened in surgery unaware that resident surgeons worked on me. Here I am 3 years later still in excruciating pain and no justice. I ended up with another surgery by a doctor that was going to help me and take a look and found horrible remnant reconstruction material left behind with a Seroma 2 years after mastectomy. I had nerve entrapment and was told by my previous surgeons that everything was removed and it wasn’t! Yet the surgeon who claimed everything was out would aspirate a Seroma 4 more times to lesson pain. Chemo and radiation caused more damage to the nerves. I’m in pain management with a great doctor. However when it was time to refill my prescription last week the pharmacist at the hospital claimed they didn’t have meds in stock. I replied I will need to go to ER. I have no medication left!!! Pharmacist at that time said let me see what I can do. He filled my prescriptions. Nothing but horrible lies. Our future is at stake with lies by pharmacist who simply profile you and refuse to fill medication claiming they have none in stock. It’s a lie!!! I’m so upset. My pain dictates my days and I am disabled by my nerve and tissue pain along with other auto immune disorders I now have after cancer treatments. We cannot be told that there are no medications. This is tragic. The drug addict will find their fix. Yet the chronic pain patients are refused refills and lied to. Pain affliction is a lonely disease and only those that suffer every day understand this horrific pain. If I could take Tylenol I would! It doesn’t work!!
I Am a 57 yr old woman who has lived with Chronic Pain for Many yrs. I Have had 23 Surgeries.. 13 of which have Been on My Arms and Hands ..Many Due to Complicated Surgeries and Have Been Diagoned with Numerous Spine Problems..With Arthritis Through Out My Body..Tears also in Both Hips…Foot Arthritis.. Arthritic Knee…the List Goes On. Everytime I Have an MRI there Shows Reasons for My Pain. Now What? They Want to Do More Surgery..I Have Had Enough Surgery and Will Say it Can Make Matters Worse. They are Pushing Me to Have Unwanted Surgeries Because They Are Taking Away My Pain Control. They Have Taken Away My Quality of Life and Left Me in Terrible Pain So That I Cannot do Everyday Functions. The Pain is Unbearable at Times! They had Just Gotten Me on the Right doses to Make Life Easier and Pain Free and Now they Want to Take it All Away so That I Suffer in The Worst Pain..Noone Should Have to Endure. I Have Had All the Shots they Suggested to No Evail. Why Would Anyone Think Someones Pain Will Magically Go Away? They Say Your Pain is Emotional…Whats Emotional is The Anxiety of Wondering How You Can Go on Like this. And yet They Say Your Emotional Pain Makes Your Pain Worse? My 75 yr Old Husband Should Not be Taking Care of Me,,,All Because I Cannot Function in Pain. So Now,,Im Spending Much Time Lying Down. This is Not Living! And I Refuse to Have More Surgery..Because This is My Only Option. To Maybe Have Another Surgery Go Wrong..And Not to Be Able to Get Relief from The More Pain There After . To Have Your Child Watch You Suffer in Pain is Putting an Emotional Toll..No Child Should Go Through. Let Alone Your Alling Husband. How Can We Be Forced to Do This to Our Loved Ones? And To Ourselves?
I’m a 60 yr old women that has scoliosis & degenerative disc disease. I’ve lost five & a half inches & there is five disc that are involved in degeneration.
I’ve been on a number of pain medication with very good results. I had one Dr that actually understood how much pain I had. She had me taking Morphine ER 3xday with Oxycodone 4 daily for breakthrough. For the first time I was actually able to function well.
Unfortunately she left the area. The next Dr. cut my meds more than half. It was so bad that I felt I had no life at all. Currently I have no Dr. I have an appt next month but I worry that it will not help.
I feel life isn’t worth living. Not sure what to do but when you hurt so severely ever time you move, is it really worth living.
To whom it may concern I am a chronic pain patient who has suffered greatly my chronic pain started in my arms it was unthinkable pain I could not lift my arms I couldn’t look at clothes on a clothes rack without devastating pain if I was driving I would have to pull over and cry for God’s help it was so devastating and hurts so bad but my nightmare of pain wasn’t over by a long shot now in my back I had a burning Inferno of pain I literally laid in bed bedridden 2 years with my back on fire the only way I can help the pain was to lay on a heating pad during this time I was puking I had a fever no doctor knew what was wrong but I knew devastating pain and it riddled my body I literally cried for 10 years straight may I just say if you had this kind of pain and the tears roll down your face everyday how would you perceive your life to be devastating say the least living with this chronic illness is just heartbreaking it’s been a total nightmare one I would not wish upon anyone somewhere I read about a device that measures Pain Scale I think it was in the UK supposed to be in the US sometime this year in my opinion this would help a great deal in the opiate crisis doctors would be able to measure your Pain Scale therefore they would know if you needed proper pain medications for your illness something has to be done we can’t live like this it’s an outrage and it’s not fair to anyone with a chronic pain condition or an illness that requires pain medication I know I for one will not stop when it comes to advocating for people with pain when are pain condition is not being met we face heart attacks Strokes high blood pressure memory loss concentration problems which could cause accidents there’s a whole list of things that that we deal with puking the emotional and physical effects there’s something that has to be done and done quick and by the way I am a very strong person I have dealt with pain off and on my whole life I pulled every ligament in my ankle at the age of 11 and didn’t even shed a tear but I have shed many tears from this illness please help us go forward so that we can live comfortably in our lives and not be devastated by pain I pray for all of us that there is change amen
My name is Arianne and I’ll be 50 next week.
I was involved in a tree cutting accident in 2010 and sustained a cervical spine injury as well as having chronic illness that causes daily pain. I was able to achieve a good level of functionality while being treated with opioid medicines to mediate my pain. I was able to garden, walk, and to travel to see my children and grandchildren.
I was able to take care of farm and household chores with more ease when I had access to prescribed pain medicine, and I could even sit and watch a movie comfortably with my loved ones from time to time. Now, my life and my health are spiraling out of control after being without medicines to effectively mediate my chronic pain for almost 5 years.
I have also been subjected to under-treatment and denied treatment over the last 4 years for issues outside of my chronic pain issues. I’ve had to have 5 surgeries over the last 4 years, including an abdominal hysterectomy, which resulted in me being subjected to what they refer to as ‘ENHANCED RECOVERY’ after surgery. This is a nice way of saying they will severely limit or deny opioids altogether peri-operatively.
If people really believe this opioid insanity will not touch them in some way they are tragically mistaken. If you have a family, or a body, or if you are a human being who will get old and perhaps need hospice or palliative care, you’ll be affected.
I am 49 years old and suffer from lupus, sjrograns, fibromyalgia, ic, and licheonscaroses! This is so painful actually feels like someone is rubbing a lemon on a open wound 24/7. Yet doctors think it is just a little inflammation. No one will ever understand what it is like to cry 24/7! The suicide rate is so high with all of these things. Many young girls are taking there life as the cannot live in pain. Things need to change! We are in pain we should not suffer like trash!!!!!
Hello and thank you for reading this.
I am a 35 year old male suffering from chronic pain. I am working a manual labor trade by necessity, made incredibly difficult due to my injuries, and with every passing day seeming as if the clock is approaching midnight on our main income.
17 years ago I was in a car accident that ruptured a few discs in my spine. My little car was crushed by a drunk driver with a lifted truck. I adjusted after a year of PT but slowly felt my condition worsen over time. 8 years ago, a drunk teenager pulled out in front of us on the highway. We went 70mph into the side of a suburban.
70mph is when seat belts break your sternoclavicular joint and ribs, arms tear out of socket, knees/feet get crushed, and your head hits a wall and snaps back into another wall.
I never thought life was going to be like this. All of the dollar signs in the world never took away my limp, inability to sit or stand for extended periods, or helped in any way to save me from the excruciating pain. My left arm and hand suffer severe radicular neuropathy from my cervical spine injury. The days when it shakes are better than the days of full pain. No day is ever better than any other.
I couldn’t hold tools at my old job any more and had to change career paths for the 2nd time due to pain and drunk drivers.
When my first pain clinic shut down, I was okay with dusting myself off and moving on with life. The treatment after my second wreck was even worse.
To get the prescriptions I needed to dampen the pain, I was forced to undergo injections from behind my ears to my waist. These injection sites would sometimes create painful blister/pimple type growths. I’d break out and get rashes and have insatiable hunger. It turned me into a monster.
I still the marks to this day, albeit diminished to small white head size, and they’ll still release tiny white fly-egg looking pieces of flesh once in awhile. Dry needling is someone trolling the medical community, fyi.
When I told my pain doctor she said it was psychosomatic and recommended me to a counselor after cutting my meds in half. The next day, she demanded a pill count that I passed, and further cut my medicine, saying they were causing a sudden skin reaction.
We finally decided this torture was enough and followed our original plan of moving to another coast. Staying sober wasn’t a problem. Agony was.
When we arrived to our new state, medical marijuana helped to some extent, but nothing can take away the pain that C3-5 and T4-10 herniations, pain that shoots down my limbs to my joints and fingertips and toes, the pains of spasms, and every associated nightmare with chronic pain. At least with marijuana I can sleep slightly better and I can become hungry.
It is a terrible life to live. I am now ornery as an old man and the arthritis to prove it. My joints hurt so bad I can hardly move. I’ve ground my teeth down to nothing. After a recent visit to a pain doctor, he recommended methadone.
I’ve never failed a pill count. I’ve never failed a drug test. I’ve never sold pills nor bought pills, nor done anything that should exclude me from receiving help. I have lived the last few years with this excruciating pain that I’ve not “just grown used to” like doctors had said. Or, “become easier”. Any chronic pain patient knows this is patently false.
No amount of yoga, exercise or stretching has taken any of this away. Physical therapy only goes so far. I’ve already lost two great jobs to this and will likely lose my current one. This is no way to live life. Things were supposed to be better.
The war on opiates is a war on the infirm. I have yet to meet a legitimate chronic pain patient who contributed to the social ills that we are told are happening around us. I have heard and known pain patients who have taken their own lives. Not surprisingly, suicide rates have doubled amongst the disabled. I’d be a liar if I said I didn’t consider it at times.
I am sorry for being long-winded. Most people probably won’t read this. I hope, though, that people can at least see something is wrong when someone with severe maladies can’t receive pain care. I write this in the waiting room of a behaviorist who told me last time “try not to think about the pain”.
Good luck in your journeys.
I’m a 48 year old woman living with chronic pain.
2 years ago I was diagnosed with Fibromyalgia, as well as a genetic degenerative connective tissue disorder.
I have been very fortunate, until recently. My pain has been adequately managed with water therapy, gabapentin and tramadol. My doctor here in Texas prescribed me the state maximum of a daily pain medication. Until recent months this has been adequate, however it’s no longer sufficient. After two years my body has developed a tolerance to it. The manufacturer of tramadol (hcl) indicates safe useage of up to 600mg if tramadol in its prescribing guidelines, however the state of Texas restricts my doctor from prescribing more than 200mg.
After numerous attempts at other options to control my pain, the state of Texas has essentially left me with no other option but to begin taking opioids, specifically Hydrocodone. This is my worst nightmare come true. I have a medication that works extremely well at controlling my pain (tramadol), on a good day my normal dose is sufficient. On the absolute worst days I have never needed to exceede the manufacturers guidelines of 600mg. But because my states government overruled the drug manufacturer AND my doctor, I have been left with no option but to resort to Hydrocodone for breakthrough pain.
I have chronic pain. It will never go away. My goal was to avoid opioids for as long as absolutely possible because I’m fully aware once I began taking them there would be no going back. I’m only 48. I desperately do not want to be a 55 or 60 year old woman, living in a fog, dependent upon patches. But because my STATE government overrules the manufacturers guidelines and dictates my doctor can only prescribe 1/3rd of the recommended maximum doseage of tramadol, I have been *forced* to begin taking opioids easily one to three years before necessary.
This is NOT right. Government should NOT have the ability to override my physicians medical recommendation when she is in full compliance with federal law and the manufacturers recommended dosing. Sadly, my story is not unique.
I am 45 yrs old married, mom of 4. I started feeling more and more pain in my back in 2007. I worked on mobile blood drives as a phlebotomist. A very active job. After a year of drs thinking I had a pulled muscle. I insisted on an MRI. I had a severe bulging disc. After another year of injections and PT. It was decided I needed surgery to trim the disc. That led to it herniating and a 2nd surgery to fuse my L4-5, 2 months later. I also had a bulging disc at level 3-4 that was left alone. By 2013 I had another surgery for a neurostim implant after the disc got worse. by 2015 i needed 2 more surgery for a revision and full system replacement on my stim. and in 2017 It was found that i had 2 herniated discs in level 2-3 and 3-4. In 2018 I had surgery to trim both discs.
Living with constant pain. And being told by the last 3 Drs Ive seen that I will be in pain the rest of my life. And being 45 yrs old, with a family. Its a hard thing to hear. Having somewhat of a tolerable quality of life at best. Living my life around my pain. Injections and nerve burning nerver worked for me. Ive been through every treatment possible. And the thought of a possiblity my only means of keeping my pain at bay could be taken away is disheartening. You may as well kill me and be done with it. Living in that kind of pain. Not being able to walk without every step raidiating pain up your leg and into your back. If youve never felt even close to that. You cant possibly understand.
The people who abuse opiods are in the minority compared to those who rely on them for some kind of normal quality of life. Taking that away becase you think you know whats best, its not ok! I have degenerative disc disease. Theres no fix, no cure. And typically hereditary. It will just get worse. I may not have another 10 years before i end up in a wheel chair. Sooner if my medication is taken away. I am now disabled and day to day is different on what kind of day I will have. Its not a life I invisioned for myself.
I am writing this to try to explain why this medication is so vital for my sense of self, my sense of life.
I have NEVER regretted my choice to serve the Military; I was never concerned about what if anything would happen to me while serving. I was always told,” Whatever happens to you, we will take care of it”
I suffer from a handful of Medical Issues, Crohns Disease, Back Issues, and am developing shoulder issues, These 3 have required some surgery. I have a bad ankle; I am developing joint issues (joint issues are attributed to The Crohns). I am also suffering from Bad Anxiety and Depression, as well as Diabetes. I required 3 Hernia repairs as well. Now at one time I was also diagnosed and treated for an Extreme case of Bi-polar Disorder with Major Depression, after years of treatment and medications, and a chain of incalculable amount of Psychologists and Psychiatrists and Social workers, I have now been told I do not have it any more??
I have been suffering from the Crohns Disease for some 25 years or so. The Crohns Disease was first diagnosed when I was rushed to an Emergency Surgery due to an impacted blockage in my Digestive Tract as well as finding numerous fistulas. The disease’s first surgery required the removal of approximately 5.5 ft. of my intestines, (lower intestine, and colon). After the surgery, it became “painfully” obvious that a “normal” life was never going to be possible for me. I was unable to go too far from home, and if I did, I had to have access to an almost immediate bathroom. And that seemed to be the extent of the issues with it. For the first decade or so, I did not require much medical help to cope with the Disease. It seemed to have disappeared, gone into remission for the most part. I did require the repair of a hernia that had appeared after the bowel resection. Some years later, I started to develop horrible cramps and horrible and extremely forceful diarrhea, so painful and significant that I often would wind up in the fetal position to try and cope with the cramps, after the 20 to 30 bowel movements in a day, I would often have to try and sleep due to me being so drained and exhausted. After a couple of years like this with no life to speak of, being forced to work at jobs that sometimes would exacerbate the pain or cramps. This period of time, I was incapable to maintain any kind of gainful employment for longer than a 6 month period due to having to take days off at a time because of the flairs and the symptoms. Eventually I was introduced to Remicade. Even though I did not have any known active irritations in my intestines, and was just dealing with the diarrhea and cramps. I was prescribed and started receiving the Remicade Infusions, “OH WHAT GLORY”, I was able to have a life again since my diagnoses. I had the infusion every 5 to 6 weeks, I was so Happy with life. I was living again. I inadvertently found out how much the cost of the infusions were, I was absolutely stunned by that, but still, I was ecstatic to find this drug and was so Grateful to be on it. During this time I was even able to become an Active Member of My Local Community as well as an active member to my local Fire Department, I even had become a Licensed and Certified First Responder. At this time I was on a small dose of pain medicine to cope with the “breakthrough” pain that I was experiencing. Eventually I was forced to step down from the Office I held with the Local Fire Department as well as being an Active Firefighter. Because of being taken off of the Remicade. I was forced relocate because of a hurricane. To this day whenever I broach the subject of being put back on Remicade or any other similar medicine, I am told it costs to much, or The Doctor wants to wait for an “Active” flair. It appears to me that the GI’s have stopped treating the Crohns and continue to treat the symptoms I was suffering from.
This is when I was introduced to Pain Medication. Due to the increasing pain in my back as well as the vicious cramps I was experiencing. I was enrolled in various pain management clinics and introduced to various Doctors; they wound up suggesting and prescribing 2 Percocet tablets 4 times a day. This is the time in which I was diagnosed as having an Extreme case of Bi-Polar Disorder, (Formerly Manic Depressive), in an effort to explain why my back pain was becoming much more of an issue, a couple of MRI’s were performed and it was discovered that I had suffered a blown out disc in the lumbar region of my back, after a protracted regimen of Physical Therapy and other attempts to alleviate the pain. The Doctor and I discussed having a disc fusion of the bones above and below the disc. I underwent the Surgery, it appeared the surgery had repaired the issue and I started to believe I was going to be having a life again. That turned out to be wishful thinking, and the pain started to assert itself again. While dealing with this pain and the issues caused and associated with Crohns Disease.
A Major Hurricane had forced me to locate to a New State, which is my current location. When I was looking for Medical Assistance in the new area, I was informed that my new location did not have the Financial Resources to restart the Remicade Infusions; in fact I had lived in the area for some time before I was even referred to a GI doctor who had experience with Crohns Disease. I was not being treated for the Crohns Disease; I was back to being treated for the effects of the Disease, (Diarrhea, and Severe Cramps). The dosage of the Percocet helped with the cramps as well as the pain in the lumbar region of my back, making it tolerable. I even held a very beneficial employment at this time.
I had bounced between numerous PC Doctors for some time; In fact I do not believe I had never seen the same Doctor more than once at this time. After finding and being assigned a PC Doctor, I was approached about taking me off of the current dosage of Percocet, and being moved to a long term medication because the Percocet could possibly bad for my liver, (even though I NEVER showed ANY Liver issues). After talking about it, we settled on Morphine being the most accurate medication my situation with my Crohns and my Back Issues. So I was prescribed Morphine. After various dosage changes we dialed in. I become a father in this time and Oh What a GLORIOUS feeling. After years of being unable to cope with people and situations, It looked like I was going to start to have a life again of activity of hobbies and of socialization. Life was remarkable! Shortly after I became a father, I noticed that I was not experiencing Major issues with my mental health.. Time had passed without any Major mental health issues after which I was told “Hey, You are not Bi-polar, Not sure why you had that diagnoses”. So I was no longer treated for Anxiety or Depression. I believed whatever I it was, it was either cured or gone somehow and I no longer would have to worry about it.
A few years went by and nothing major had happened, until I started to get violently sick in. I was unable to keep anything in my system and I was unable to have any type of significant bowel movement. I had experienced this type of reaction once before, and that was when I underwent the emergency surgery in which I was diagnosed with the Crohns Disease. After 4 trips in and out of the Emergency Department of the Local Hospital, It was decided by a the surgeon I was consulting with about the possibility of repairing the Hernia that reappeared after it was supposedly fixed years before. The surgeon decided he would fix the Hernia and while he had me cut open, he would check out my intestines, in an effort to find out what was causing me to be sick and unable to function. I was told after the surgery, that there was a significant blockage as well as a six inch section of my tract that lost all blood flow and died. The surgeon repaired the hernia by putting the mesh in, as well as removing the dead piece of intestine. Being unable to work for a significant amount of time, I lost my job. I was unable to work, so in an effort to seek assistance, I filed for temporary full disability, twice. I was denied both times.
During this time, I was able to quit smoking after a lot of urging from my PCP. Unfortunately, I wound up putting on a significant amount of weight, and this is when I was diagnosed with Diabetes. Over time I started to develop smaller issues with my shoulders, my knees, my ankles. I did mention to my PCP about these issues to have them documented, since I was on the Morphine it was helping control the pain and discomfort.
Some years passed by and there was a push to start removing Vets from pain medications, So against my wishes my pain medicine was cut in half. After 2 weeks of the new dosage, I was physically and mentally unable to cope and to exist in the state that I was in. At one point I developed an absolute horrible case of hemorrhoids. I tried and tried to get an appointment with my PCP, but to No Avail. I suffered from them for 4 weeks, and was unable to go back to work due to the fact I was unable to perform the job to adequate standards. I had gotten so sick and unable to function, I found someone who would help me do a walk in to the PC Clinic, After almost 7 hours, I was able to see my PCP, after being examined by her and being told by her, “That it is very clear to her”, That I needed to maintain my previous dosage of my pain medicine. I never showed any indication of possibly abusing my medications, and I never called to request refills before they were due, So that day she upped my medication back up to the previous dosage rate. Since I was unable to see a GI Doctor without first getting a referral, I requested that referral. The purpose of the referral was ever since I had that case of hemorrhoids, I had developed some issue in that I had a seepage of some type of liquid from my anus. At one point I had to change my undergarments approximately 5 to 10 times a day.
I went in to see the GI Doctor months later, they sent me home with medication for hemorrhoids, even though I no longer had them. I was told flatly, by the GI Doctor he “had no idea why my bowels were leaking and that I would have to learn how to live with it”. I was also prescribed something for the Cramps in my insides, it worked for the cramps but the bloating and the diarrhea was still a significant symptom. The diarrhea to this day is still treated with the Loperamide. It is still not under control.
A few years back, I found out my PCP was retiring, and that I was supposed to be assigned to a new PCP. I was unable to see a Doctor for a couple of years due to not having one. I was still able to receive my medication because different Doctors would issue the prescriptions.
I was finally assigned to my current PCP; I was given an appointment to meet with her, after an initial consultation in which I told her everything. The joints, the back, the shoulders, everything. She mentioned that there was another push to cancel and stop all pain medication prescriptions. I asked about my issues and I was assured that we were going to explore alternate therapies, we were going to have MRI’s, we were going to find and treat my issues. A year later, we have done nothing of note. We tried creams, Tinge Units, Muscle Relaxants. Nothing seems to work. The only thing that has been done, that is the gradual reduction of my Pain Medication. So against my wishes. I am being forced to stop taking them. There is nothing being done to find and treat the cause of the pain that I suffer from every day.
I have noticed the more I think about the unilateral stripping away of my health care, I am starting to suffer again from depression and anxiety, something I thought I would never have to worry about again.
I feel like, We are being discarded, We are being told “Whatever is wrong with you, We NO LONGER CARE”. We just want you to be quiet and just die. Disappear into oblivion, so you will no longer be a burden.
I am so scared when I think about the Veterans that will succumb to their darkest thoughts. They will have 2 avenues in front of them. Resort to Illicit or Illegal Drugs, or End their suffering altogether.
After 14 years of a treatment program, That has been proven to work. I am being told, “It is no longer an acceptable treatment program”. I thought it was my health care. I thought It was about my quality of life. I thought it was the Promise I was told decades ago, “We will take care of you, since you were there when we wanted you”.
My wife and I worked our whole lives to get to retirement and in a instant all we had worked for was gone. I was injured and damaged my spine and am in chronic pain 24/7. Pain medicines gave me my life back and the CDC took it away. As American citizens we should have the right to these life saving medicines. There are people who abuse many things but because a few do all others who use their medicines properly should not have to suffer. To go after chronic pain patients and their doctors is a crime against all this country stands for. Stop this genocide now.
I have been living with Severe Chronic Pain since a careless Driver slammed into the vehicle I was Passenger in on 2/02/2002,
Causing Major Back Surgery. Another careless act caused me to have 2 Spinal Fusions in my neck, another 1 in 2015, totalling
3; Cervical 5, 6 & 7. Same Surgeon. My Bone Density is fine, never broken a bone, but carelessness by other people has affected my Life in a Major way & caused me to have to take Pain Medication from a fine Dr., as it was not considered to be wrong until recently.
The current Laws, Guidelines, etc., due to, again, careless actions by others who may want to get “High”, etc., have caused me to lose my Independence & my way of Life.
I only wish the people who have caused me all this pain had to deal with this instead of me. The “Opoid Crisis” has made people like myself Criminals because of the Medicines judged by Doctors to be effective for dealing with, at least my Chronic Pain of 16 Years.
All Doctors recently say I still need these medications, but are afraid to prescribe at least one of them, so I am presribed something for “moderate” pain, not Severe Chronic pain.
Doctors should not be afraid of our Government to Treat their Patients properly, and those of us who need these medicines should have to live in constant pain because of someone elses’ addiction or “partying”. I promise you, I have never felt anything but relief from pain from the medications now withheld, and if there was another way to mitigate this pain, I would never think of taking another pill.
I have tried all other suggested treatments to no avail.
Why are you treating us as inequals & making us good honest people to be thought of as Criminals? You don’t do a Hysterectomy when a Radical one is needed. You are making us be herded into Pain Clinics like Hogs to slaughter ans silencing the Doctors who treat us. They shake their heads when wtiting prescriptions which don’t kill. Our Pain, and the negative effect of it on our lives, not to mention the misery we endure daily & nightly.
When will the Politicians and Bureau Heads admit we exist, and allow us to be treated properly, and with Respect. We are Good Citizens just trying to be active members of Society. THAT was are God Given Right. Please open your Minds and Hearts, and do for us what you are doing for self-addicting addicts, Give us the Right to have the Medical Care we so badly Need & Deserve as Chronic Pain Patients. I, for one, was caused this by others. I HAD
NO CHOICES.
THANK YOU!!
I have endured 30 years of chronic pain pain has been a constant and big part of my life, unfortunately. I have suffered with spinal disks issues my entire adult life. And I have done everything in my power to help my cause: multiple rounds of physical therapy, traction, tens units, heat and cold therapy, avid gym goer at various points, a walker, 10 years of chiropractic care, 10 years of steriod epidurals both cervical, lumbar, and sacroiliac joint. I have also had a 3 level cervical fusion, C3-4, 4-5, 5-6, a sacroiliac joint fusion, and a lumbar fusion, L4-5, 5-S1.
Despite severe pain, I’ve only began taking Oxy just in the last 2 years. I started with a tiny pill, that I often broke in half to take the minimum. After my lumbar fusion just over a month ago, I was given a week’s prescription to go home with: it was more pills and it was for twice as much, but I still broke each in half oftentimes to just take the minimum. In the month since my surgery, I’ve averaged just 1 pill a day since. I have a supply of pills over a month later still. Clearly, I am a very responsible user. Although it might appear I do not really need these narcotics since I take a very negligible amount, IT IS THE ONE LAST AND SURE THING that works for me. I continue to do everthing for my physically situation but I can’t do all of these modalities 24/7. Matter of factly, pain woke me up at 2:30 this morning and never went back to bed. It is in these instances that I use my medication; I use it as one more tool to help me do life. Despite that I use it minimally, make no mistake, I depend on it to be a functional individual. I honestly don’t think I could do life without it.
I am all for government intervention, measuredly, as it was clearly needed. But, lets not forget the legitimately chronically hurting that NEED these stronger aids. It doesn’t have to be this difficult. Those patients with long established conditions, backed by lenghty and thorough combinations of multiple physician opinions, physical exams, blood studies, imaging, etc, can be green lighted to continue taking the medication that they need. It needs to be a process that is well thought out, with whatever restrictions need to be in place, that in the end serves all indiscriminately. Please don’t let the sins of the abusers be a punishment for those who legitimately need their narcotics. And by all means, continue on the path of alternative, but equally viable, options. They are welcome.
I was diagnosed with refractory Crohn’s disease at the age of 14. Today at 60, I have lost so much to this debilitating, painful disease. I have lost my career( which I loved), had to move back to my hometown after living in San Francisco for over 30 years, a fiancé who could not deal with my disease, my financial security, and friends. I have had 9 bowel resections, just underwent a double bowel resection and removal of severe adhesions. Since my first surgery in 1973, I have had severe chronic abdominal pain, along with diarrhea and weight loss. Over the years I became so sick, I was referred to University of California, Medical Center, San Francisco, UCSF pain clinic run by a Pamela Palmer. Since I did not want to take narcotics, I went thru all the other methods to quiet my pain. I did:
Biofeedback
Yoga
Mediation
Body work
Chinese acupuncture
Japanese acupuncture
Swimming PT
All to no avail. Dr. Palmer finally put me on a patch every 3 days, with a pill for break thru pain. When I had to leave SF and return to my hometown to be close with family, I was referred to Dr. Dolores Cope, head of University of Pittsburgh medical, UMPC. After having my 6th bowel resection, Dr. Cope put me with a young pain management physician. He put me on a stronger patch with pill for break through pain. Due to being way over medicated, I was bed bound for 4 years. It was horrible. I could not drive, balance my checkbook or even cook for myself. After my 7th bowel resection, I told this dr I wanted off the patch as it was ruining my life. His response was, “This is the only way you’ll have a life. If you do not take the patch as I prescribed, you cannot be in the pain program.” I was stunned. I took myself off the patch and somewhat got my life back but 8 still had horrendous pain. I found a wonderful pain management physician who is associated with a large hospital system. He is very conservative and compassionate. We work as a team. With all the extensive nerve damage I have as well as refractory severe Crohn’s disease and short bowel syndrome, we agreed I should take 4 pills a day. He also prescribed a liquid form to take when my pain is higher than 7. This helps keep me out of the ER. I go every 3 months, they do a pill count, measure my liquid opioid and at random do a urine test. Everytime, I am always under, meaning I try very hard to go without but some days are worse than others. He trusts me and I trust him. Without pain medication, I would be 100% house bound. Today, with my pain managed, I can go out without the fear of having an accident.
I still have terrible abdominal pain and always will do to all my surgeries and my bowel is constantly inflamed and ulcerated. My disease is in my small bowel, so I cannot have it removed. Due to all the diarrhea my rectum is extremely painful due to many fissures and several fistulas.
I would have no life. And as far as I’m concerned, taking pain medication away from me, who is now disabled, is pure discrimination.
The crack down on scripts is what CAUSED me to try heroin. I had recently had spine surgery, the pharmacies were all out or lying saying they couldn’t fill my script. I was in so much pain I made some phone calls and got heroin.
When I have a pain flair getting medication is such an ordeal i just go straight for the heroin now as i’m in too much pain to wait a week and drive to 20 different pharmacies.