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.
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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 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.