Tell your story of living with chronic pain, by leaving a reply at the bottom of the page. Do not mention specific medications or dosages. Stories do not appear right away.
Official Site
Tell your story of living with chronic pain, by leaving a reply at the bottom of the page. Do not mention specific medications or dosages. Stories do not appear right away.
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.