Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. I suffer from fibromyalgia, and nothing has worked except opiates. I also combine it with gabapentin. My doctor lowered my dose by half on morphine stating that it was a federal law even though I knew it was a recommendation. Then he decided to cut me off without tapering the dose. We all know that can kill a person. He then dropped me as a patient. I had to go on methadone for pain management with addicts, and do therapy and groups for addicts. I had to get a new doctor, and none in my area will put a patient on opiates now. I’d have to go to pain management yet again to get a script. My doctor said I would be better off on the methadone. After 2 years, I now only have to go 2 times a week to get the methadone I instead of 7 days. It’s much more convenient to get the morphine, and it had less side effects. In no way is my pain managed well, because a higher dose make me deathly ill. My husband also suffers from fibromyalgia, and severe nerve damage in his entire left leg, foot, and hip. He is only on a low dose of gabapentin and nothing else. Again, he would have to go to pain management for opiates. This would be the 7th time! Plus the physical therapy actually hurts him worse. They had to stop each time he went. He’s fighting with the doctor to try to find some relief! He’s not eligible for methadone. We can easily see why people commit suicide over pain. Chronic pain patients are being left out of the equation. It doesn’t matter that your not abusing it or an addict. Something needs to be done. It’s never good when the government dictates what doctors can or cannot do.

2. I’ve been a musician for 17+ years, I also loved to bike, hike, garden, backpack, and just general outside stuff. I also was attending culinary school of which I couldn’t finish entirely because of spinal degeneration, and bone spurs jutting out from the irregular discs causing me increasing pain as the years go by. At the time it started happening the doctors thought it might be my kidneys that were the problem. We thought this because I happened to have a separate urinary tract problem that has since went away, but the pain has persisted, and even increased. Once it was determined to be my spine, and not my kidneys, I was immediately taken off pain medication, and sent to a pain clinic. I had multiple cortisone injections, nothing. None of the meds did any good, some just made me sleepy. Finally got into a spinal clinic, they suggested a spinal stimulator implant, which I tried, and it was an epic fail. Now It’s to the point that to get ANY opioids (which when I was taking the pills I could at least function enough to get around the house, cook, go to the store etc.) I have to get an implant, which even then you have to get a trail shot of Prialt which makes you feel awful before getting an implant with Morphine. (of course after a trial Fentanyl shot) All this time, there are no times throughout the day where i’m not at least in a 6 of pain, and mostly higher than that. It’s been since 2015 that i’ve been dealing with this, and it’s 2019 now. In the meantime I get nothing for pain, and the doctors hands are tied, they know how much pain i’m in, and they are stifled to help.

3. I have been left with chronic back pain from failed back surgery in 2015 that damaged nerves that impact my lower back and right leg. I’ve tried all sorts of therapies but nothing helps except pain meds. Without them I would pass my days in a wheelchair.

4. Skipping the details and bottom-lining:
   There is NO CARE in HealthCare these days . . .

5. Chronic Pain Patients Suffering!

   Hi! My name is Melissa and I am one of the many chronic pain patients that have been hit hard by the government interfering with medical practices and needs. I understand that there is need for some type of control on certain medication and I support that. The last thing I would want is any of my adult children falling prey to addiction to prescription or street narcotics. Saying that, I think that there is a huge lack of regard for how actual chronic pain patients are now being treated by doctors, pharmacies, and insurances. With each state creating their own laws and following CDC guidelines as the line in the sand is hurting many people without due reason.  
   I have 12 herniated/bulging spinal discs along with chronic fatigue syndrome and fibromyalgia… and for the past 10+ years have been following specialists assigned to my care and getting steroid injections, nerve blocks, physical therapy, acupuncture, massage therapy, and Just recently surgery. I always follow strict doctor orders and due exactly as told to help with my pain. This does include medical therapy of higher than 90 MME narcotics which has allowed me to continue working as a professional technology leader with a fortune 500 company for the lasts 25 years. Now that Louisiana is forcing pain doctors to taper all patients down to 90 MME or lower, I have been removed from my Duragesic patches and lowered Norco pain medication. With no alternatives offered, how am I supposed to live, work and support my family? The pain is now so unbearable that I will have to file long term disability without any alleviation opportunities afforded to me. If there were alternates to opioid medications out there, why are we not being offered that medication? This type of suffering is unnecessary and cruel.

   Thank you for your time!
   Melissa

6. Here is mother’s story – Cynthia Britton

   I am RN retired. 70 Years old. Have multiple Issues all documented medically for all to see. When in school for nursing we were instructed by the joint commission to listen to our patients in regard to their pain levels.

   Now medical staff ask about pain it’s ignored, and only treated per CDC guidelines. This is how much u can or can’t have ignoring the doctors Educated Evaluation in regards how to treat their patient… we must suffer the differences between doctors and government. Please explain to me how a government program that is many many miles away and doesn’t know me and hasn’t had the availability to see my documentation in regard to my body damage and my need for pain meds. Everybody says we’re supposed to honor our elderly yet you’re making us suffer at what was supposed to be the golden years of life. So now we’re poor and we hurt and nobody will listen to us! please do something about the allowance of pain medication for those of us with chronic pain. my name is Cynthia and I think I deserve more from my government than this current situation.

7. In 1993 I was a healthy forty year old with an active and profitable anesthesia practice. I was building our family’s dream home having spent 18 years reaching the peak of my career, when I stepped off a curb and stumbled without falling. But in doing so, I blew out three discs in my lower back. I spent the next ten years using conventional, non-opioid treatments only to watch the problem grow progressively worse. By 2003 my doctors told me I needed to have surgery and not for three levels but for five, as I was now suffering from degenerative disc disease. I was told that if I did not have the surgery, in ten years I would likely be in a diaper and a wheelchair. So I went in knowing I would come out on the other end a chronic pain patient taking opioids for the rest of my life. naturally this brought an end to my healthcare career, so I planned my transition from healthcare to a career in information technology. Following a five level fusion booted a new career as an IT consultant and developer. It took another ten years to build that career into something profitable and by 2016 I was earning six figures again. Now planning how I would prepare for retirement, I decided to move closer to my children and moved to Ohio believing that in a larger IT market, there would be steady work well into my 70’s. Except that when I arrived in Columbus, I was immediately hit with the opioid crisis there and on my first doctors visit I was forced tapered to half the medication I had been taking for the previous seven years. As a former anesthesia provider I sat and listened while the doctor, not knowing that I had a medical background, lied to me on why he was refusing to write scripts for what I had been taking. Blaming the government and making claims such as it was against the law, when in fact it was for his benefit not for mine that this was being done. I’ve been a chronic pain patient for twenty-seven years now, on opiates for seventeen of that and not once have I run out early, seem more than one doctor or exhibited any behavior to indicate that I was at risk ye this is what I am confronted with every time I have to be in front of a healthcare provider. From my point of view, the entire healthcare profession has collectively stuck its head up its ass and gone blind and deaf. Nine month after the initial taper and was force tapered a second time, now taking 1/3 of what I had been on previously and the consequence were severe. No longer able to function as had been, I lost my clients, so I tried to get a regular job, only to be let go once I begin having problems showing up at work on time or because there were some duties I could no longer perform. Ultimately I was forced to retire early. In a family where individuals live well into their 90’s I still have another twenty five years ahead of me, ten of which I could have easily held down a fulltime job. But now, I’ve lost that six figure income and I’m drawing Social Security, pulling money out of the system rather than paying into it and why, because bureaucrats don’t know the difference between chronic pain and drug abuse. At a time when I should have been putting more than half of my income away for retirement, I was forced out of the workforce. In three years I will lose my home if this doesn’t change. And I personally know 800 other individuals who tell a similar story, so that means there has to be several hundred thousand others with a same story similar to mine. So when did a drug addicts recovery become more important than my ability to provide for myself? No one has an answer to that questions, they simply keep telling me I’m at risk and when I ask for details on just what that means, they silently walk away.

8. Hello my name is Kayla an i would like to share my story of chronic pain.
   I got in a car accident 2 years ago with my son that was 3 at the time an his dad. I was driving an my son was directly behind me. I was crossing a busy street with clear traffic an was t-boned at 70mph in a 30 zone.
   My son and his dad thankfully made it out ok. I on the other hand had to get out with the jaws of life. Now i do not remember but there was footage. I came out with a broken back from L1-L5, laceration to my liver, severe concussion, an nerve damage. Was in the hospital for 4-5 days. I was on narcotics for almost two years. Doctor took me off pretty much cold turkey. He said he thought the narcotics was causing my pain. I also have fibermyalgia, an arthritis. A month later my MRI comes back that i have ankylosing spondylitis, chronic sacroiliitis, osteoarthritis, arthritis and nerve damage.
   It has now been 5 months sense i have got nothing for my pain.
   I am a 29 year old single mom of a 5 year old. I also have 2 fur babies. I have been in an out of the ER due to chronic back pain. My back feels like its on fire an burning, stabbing, aching. My SI and butt area i get electrical shocks down my legs which causes my feet to be numb. As well as stabbing, shooting, electic fire pain. I can not sit ling due to my pain. I feel i have a stick up my butt an have a hard time walking. I ahve tried many coping skills for my pain when it comes to CBD, spray, numbing cream, a bath if i can get that far down, stretches, an went back to PT to see if it would help an could not bare it. I take muscle relaxers, enebral, cymbalta, lyrika, tylenol and ibuprofen.
   I am in constant pain an i dont know what to do anaymore. No doctor will help me with something stronger for my pain an i just cant manage my life with this chronic pain. I have tried many doctors. My pain doctor is very rude to me an treats me as if im drug seeking. You cant win for losing with the guy. My insurance doesnt cover other pain clinica. Im lost and i hurt. Im tired of going to the ER an im just tired of this pain.
   Please help with advice or suggestions.
   Thank you

9. My name is Phoebe. I am a nineteen year old (please keep that in mind) girl who was diagnosed with fibromyalgia. The pain caused by my chronic condition is absolutely unbearable. I wake up each day not knowing if I am even going to be able to walk properly because the disease causes by knees to give out (among too many other symptoms and pain areas to list here). I can barely function due to the pain and I can barely think due to the brain fog the pain causes. My dream is to become a doctor and I am currently studying at a university as a major in premedical biology with a minor in chemistry, but I have to wonder every single day if it’s even possible. Can I make it to class? Will I have enough stamina and willpower to push through my out of class work? Will my brain fog prevent me from retaining the information that I learn and study? Will I flare up and have my grade suffer from missing a week of classes? I have breakdowns all the time, feeling like my life is pointless and I will never accomplish anything but laying in a bed because of my condition. I sometimes take benadryl and other sleep aids so that I can escape the pain for even a little while before I eventually wake up in hell again. I have tried a slew of medications including cymbalta, amitriptylene, sumatriptan, and lyrica, but the only thing that has EVER helped is opiates. I have received temporary (up to seven day) doses from my doctors a few times and I feel like I’ve been given a miracle. I can function, think, and enjoy my life when I have pain medication. But, of course, the medicine isn’t available to me as a long-term treatment due to the ‘opiate crisis’. I am a nineteen year old college student. I should be enjoying my life, hanging out with friends, having new experiences, traveling, learning new things, excelling in my studies (which I have found to be quite easy for me when I have pain medication and can, therefore, function), attending school sanctioned events, playing volleyball (which I enjoyed before my condition developed), and many many more things that other young adults my age do. My life is being taken from me by my condition. Doctors should not be held responsible for patient irresponsibility. Doctors should not be getting in trouble for the actions of addicts who choose to abuse their medication. The responsibility for addiction and abuse of opiates (and any other substance) lies solely with the individual that abuses the medication. We are responsible for our own actions and my life shouldn’t be taken away from me because lawmakers (who don’t have any medical knowledge) decide to blame doctors for the actions of patients. If somebody decided to stab someone to death, we wouldn’t blame the retailer that sold the perpetrator the knife, so why should we be blaming doctors for addiction? It’s time to change the laws surrounding opiates. We need our medication!

10. I have been dealing with chronic pain since the ripe ‘ole age of 34. I have had the opportunity to accomplish my dream of becoming my own boss and starting my own business. I did so for a year, but just as soon as I got my business profitable, my back became a nuisance and before I knew it, low and behold I was having the first of now five total spinal fusion surgeries.
    My spine is degrading at an all time rapid pace. The first 4 spinal fusion surgeries where no piece of cake, mind you, and pain management has helped me get through this ordeal; the pain that comes from the chronic nerve and muscle pain from the surgery and what the surgery couldn’t fix from my disease; Degenerative Disc Disease.
    So on April 1st 2019, I elected to have a 7 level cervical vertebrae fusion surgery . Yes, it was a huge surgery, and I realized that the surgery was a risky one. Yet I can assure you of one thing — I was promised adequate pain medications by the anesthesiologist who was going to be overseeing my surgical procedure itself (and my husband and I both made it very clear to him how long I had been on a 100mg Fentanyl patch and that I just had 3/4’s of my Opiate pain medication take away. He said he agreed and totally understood. So, he wheeled me into the surgical procedure room and low and behold, what does he tell me? … He makes sure to make me aware he would be giving me a non-Opiate medication for pain relief — right there I knew I was in trouble because he basically thought I was showing signs of “drug seeking behavior”, he thought I was basically just an addict and not a chronic pain sufferer., and therefore he was simply going to give me the very least pain medication he could possibly give based on what he thought he knew to be reality. But … but, as we know, just because you believe something to be reality, it often times is rather just the perceived reality rather than the actual reality. And THIS IS EXACTLY HOW THIS HOSPITAL STAY GOT SO TERRIBLY OUT OF HAND.
    That initial [yet very wrong] perception was simply multiplied and unfortunately further accepted by the staff, making matters far much worse for me. As they say, perception is nine tenths of the law. It truly remains without saying, on the 3rd floor where I was located, at the horrid medical facility SSM St Clare Hospital in Fenton Missouri, I was no less seen and treated as a pathetic drug addicted junkie who just so happens to have gotten a 7 level cervical vertebrae fusion surgery. Because of this surgery, the staff had no alternative but to medicate me for the post-op surgical pain — although mark my words, if it were their choice, they would not have offered me any pain relief medication whatsoever.

    I know the difference between an addict and someone like me who takes these opiate pain medication analgesics for the proper reasons; my younger brother died as a result of an illicit Fentanyl overdose, an addiction he had battled for nearly 15 years. His struggles were real, yet given that, to equate someone similar to the conditions he faced and lump chronic pain sufferers and the chronic pain community at large into the same category is doing nearly 2 million people nationwide a major disservice.
    At 3 am not even 24 hours after my most invasive surgery to date [and I have had 4 other spinal surgeries], I could not get anyone in the hospital to listen to me or heed my concerns. I was trapped in my hospital bed with a catheter and two IV’s that I was not able to get out and I was so upset. We wouldn’t treat our own pets this way — but humans, that is ok?
    https://www.youtube.com/results?search_query=%22When+inadequate+pain+relief+happens+post-op%22
    And, to make matters worse, I am having trouble, so much trouble might I add, that nobody will help me get ahold of the actual pain medications they administered to me while I was in the hospital. It seems strange to me that I cannot get ahold of something rather simple.
    I was discriminated against, and from the moment I walked through those hospital doors till the moment I left, I was highly discriminated against simply because I was a chronic pain patient who was on an opiate pain medication regimen and it was something they shunned me for.
    And one last thing: They specifically told me not to carry more than 5 lbs. yet upon discharge, not only did they not show me how to take care of my 3 inch wound but they showed me to the elevator with two bags in hand [both weighing over 5+ lbs. per bag] and waved goodbye. Nobody bothered to walk me to the front door, nobody bothered to put me in a wheelchair, nobody cared.
    And I have a 22 minute audio conversation with the chief medical operations officer from the hospital and he did admit that the employees had dropped the ball and it should not have happened. Sure wished he would have known upfront and while I was there!
    Now I suffer from PTSD, and will never ever step foot in another hospital ever again.
    My faith in humanity is ultimately shot; doctors don’t care, nurses are overwhelmed and don’t care anymore, anesthesiologists are worthless because they base who you are by what medications you are on currently, ect

    I am not an untrustworthy individual; so far removed from the person I once was.

    ~ Sheri Owen

    http://www.VideoYourPain.com