Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. Here comes yet another CPP story similar to the outcome of being cut down on the meds 90% without an explanation. As a patient all we have to hear from our docs are – You have no choice on the matter. So why then do they take our answers in no conciliatory way to help us out? Why bother with all them questions. I would like to add – my pain management doc that I had for 22 years retired last year and was helpful to give me a recommendation letter about my case with all my medical records on a flash drive to a new doc. I’ve had several other problems but things that has not complicated my health in any way as of my initial problem. A botched surgery and then another on top of that one, that was supposed to be an 8 hour reconstruction of the first, where I almost lost my life due to complications. On top later on I lost my gallbladder several years down the road cuz of all the steroid injections. Was never pushed to have another steroid shot after losing the gallbladder to it. Got biliary duct enlargement after that surgery and had several stints put in. During one of them ERCP processing, after cutting my ducts, the lightbulb went out on the “tool” inside of me AND the hospital didn’t carry a backup light bulb, so the biliary juices caused me to end up in the hospital for 7 days with pancreatitis and it was supposed to be an outpatient surgery. Anyway the initial first botched surgery is what has caused this domino effect on my health. After that I’ve had multiple surgeries with little to no help at all.

   So I’ve been shoved around for many tests and whatnot. Found out my bones are 116 years old and I was then 45 (don’t know how they came to that number) so my back has been problematic. Now to the end part of why I like to share this. This new pain management nurse at this new place since my other doc retired takes my blood pressure and all that and asks me every time, how my pain level is on my back. I tell her sorry, but that is not really my problem WHY I’m here. IT IS my severed T11 nerve damage with the follow-up botched reconstruction (how to me feels like I would have had a shark bite taking a chunk out on my right side torso). So I corrected her so that’s all good then right. She didn’t know okay, typing away on the laptop. Later when the doc comes in asking the exact thing about my back. I tell the same to the doc. Why bother asking what my pain level is, and my answers. This is my scenario since September last year. This nurse and doc ask me the same thing every 28 days and I respond. I’m not here for my back!!! It’s crazy. Last time I was just waiting for it. Sure enough the nurse goes again – So tell me how is your pain level on your back now? I couldn’t help but start laughing out loud. The nurse just stopped in the track and said. Ok. Let’s see… the doc will be in shortly. Oh my goodness – I start to wonder what that nurse was typing up. Cuz how could she keep repeating this same mistake since September? We are not taken seriously and the time spent with us they have to by law from insurance companies spend 15 to 30 minutes per patient depending on what you are there for.

   I just hope this whole thing with CDC, DEA, Pharma, etc etc will finally come to light how they’ve used us chronic pain patients to cover up their mistakes they made. One of these days it will come to light. Example, AMA has done good so far questioning the laws and regulations made without any grounds to make us CPP suffer (and the good legit doctors losing their licenses). Of course there’s been several docs who have taken advantage of the situation that didn’t make it any better for us. Hoping that in the near future we can see a change for the better. Bitter and hurting. Stay safe.

2. I’ve been living with pain for 35 years of severe back issues due to motorcycle accidents. Was told at the time non-correctable and as I got older the pain would get worse. It started out tolerable with pain medication. As I got older they increased the amount of medication I needed to take to keep it tolerable. Then all of a sudden they started taking away the level of medication and as they did the pain increased. I went through pain management six months of it. First two months did work. Went back to my primary doctor and was put back on what I was taking but reduced the dose. Then was sent to a different primary doctor and was again forced into pain management four more months. Didn’t work this time I was compatible with it. Almost died. Was given another primary doctor and again put on pain medication, but again reduced the dose. Then out of left field my primary doctor said he will no longer treat me and I needed to find another doctor. Which I haven’t done because of this covid19 virus and the camp fire in California. We heard doctors are not taking new patients. I have a couple of days left of pain medication, then I will be out. Not sure what to do. Been considering life issues, alternatives. Wish the CDC the DEA and PHARMACEUTICALS WOULD JUST UNDERSTAND WE NEED TO BE in less PAIN. THERE IS NO GOLDEN YEARS FOR US IN CHRONIC PAIN 24/7/365. Help!

3. I was in a diving accident while stationed in Naples Italy in 1999. I dislocated C3 “anterior perched facet” and broke both posterior ligaments. I went through three cervical fusion surgeries, two posterior and one anterior, C3-C6. Fortunately I was nineteen years old and in extremely good shape due to being involved in the sport of wrestling from a young age. The sport help me understand the power of perception and that pain is a manageable perception. I went through rehab and got back fit for full duty after one year. I continued to serve another ten years. I deployed to Iraq and Afghanistan, in one of the most arduous jobs in the navy. While I served I had pain episodes that I managed with opiates for short periods of time. Then in 2009 I came down with viral meningitis. I was then medically retired. After recovering from the meningitis I started having extreme bouts with pain and numbness in my arms and face. I started seeing pain management regularly in 2009. I was forced to receive monthly steroid injection in order to get my pain medication. Five years in, I developed a list of issues from long term steroid use. My pain then became debilitating. I was bounced around from one pain doctor to another that did nothing productive to help me. Then finally I found a good doctor through the VA triewest program. I was doing quite well under his care. I was employed as an industrial automation technician doing as well as possible in my opinion.

   I still had a major stressor: I was forced to lie to my employer about what medications I was on. It was that or not be allowed to work. Without the proper analgesic medication I’m not able to sit up in bed on my own. Let alone get ready for work and be productive on the job. Then with little notice some drug enforcement agency came in and shut down my VA-referred provider, forcing me to look for another in a time where nobody is prescribing adequate medication. I felt I had no other choice but to get a spinal cord stimulator implant. Initially I was doing okay with the implant with maybe a 30% to 40% reduction in pain, but it did nothing to improve my mobility or help with breakthrough pain. I’m stuck at home miserable and depressed. I had multiple reprogrammings and multiple visits with the pain doctor that did the implant explaining how I needed more/different help – the medication they put me on is not helping. The only thing I ever got was a blank stare, not even two words, no change in medication, no help after five or six appointments. I have no discs left above and below my fusion and the bone at the base of my skull is breaking down. I’m 42 years old and have no quality of life; my family is helpless watching me suffer.

   What can I do? I can start using illegal street drugs or I can leave the country, take my monthly VA check, and spend it in a foreign country so I can get medication. You know how ridiculous that sounds, but those are my opinions. The only other option I have is to end my life because my constant pain is unbearable. It’s nothing that can be controlled through diet and exercise, or quality of life changes. It’s debilitating and affects every aspect of my body. I wish the doctors in the United States were allowed to practice how they see fit, not how the state or federal government tells them to.

4. My husband is 56 years old he is double above knee amputee. He was recently given a script from an ER doctor for pain meds. A pharmacist at Miejers pharmacy in Champaign IL who is short with short dark brown hair refused to fill. The pharmacist claimed it was against his moral principles. Why does this young man have a right to decide what medication my husband who is very ill and suffering horribly gets to take? He is not a doctor!!! Could someone please tell me where I can report him or what actions I can take. Thanks!

5. Work accident crushed L5-S1, box build from pelvis to stabilize spine and correct spinal cord damage at site. Pain in 1980 started. Head on car accident from bad driver jarred spine and pain increased. Severe concussion caused memory and muscular problems. I have less than 20% discs in back causing instability, spasms, pinched nerves causing sharp stinging.

   I have had psych evaluations for addiction and mental stability, passed. My PM doctor now took 1.5 yrs to accept me, and meds have been the same since 2013 or so. In February 2020 the doctor started reducing meds for pain which makes walking and self care harder. I walk with a cane – 50 steps is a marathon. I feel my doctor is being pressured and threatened to stop opioid dispensing.

   I try to understand but my pain level is very high, and I dread going to the ER as they treat me as drug seeking. Three years ago I thought my back had ruptured a disc, for 3 weeks I lay on the floor in pain. I went to the ER and my BP was sky-high. Got a pain shot, then every other day I went back. Fifth trip a doctor saw me vomiting in a bucket in pain, and ordered tests, and in one hour I had emergency gallbladder surgery. Recovery was hard as my body was stressed too long and it almost ruptured. Hospital ER treats me better, but it’s been 9 months since I have gone to ER.

   What am I to do without pain meds if I can’t stand that much pain? My doctor fears the powers that be could take away his license to practice. He is compassionate but to lose his license and livelihood …

6. I was diagnosed with Degenerative Disc Disease 14 years ago then with Diabetes 11 years ago. I struggled for many years getting doctors to listen enough to help me. 10 years ago I found a pain management doctor that tried everything, but putting me on pain medication was the only thing that helped, and it barely allowed me to work. I spent 7 years on intermittent FMLS before finally having to have a spinal fusion. Two years later my insurance changed and I was forced to get new doctors. After having severe nerve damage, muscle spasms, vibrations throughout my body and extreme pain in my back, legs and feet this doctor decided that after 10 years of responsibly taking the same medications I can no longer have them because they don’t prescribe them unless you’re a cancer patient. Now I’m suffering and my quality of life is much of nothing. I’m trying everything just to survive my everyday life. My struggle is real and I personally feel defeated.

7. I started having pain 12 years ago. I have had 4 C-sections, an abdominal hysterectomy and an appendectomy. I have a bunch of scar tissue that causes severe pain. I was diagnosed with fibromyalgia 3 years ago even though I knew I had it much longer than that. I was recently diagnosed with degenerative disc disease in my whole spine with bulging discs in my cervical spine. I suffer from chronic migraines that nothing has helped. I have bad carpal tunnel syndrome. I wake up in excruciating pain every single day. I scream and cry for the first hour or so because it’s that bad. I cant be touched, my clothes even hurt me. I tried getting into pain management 2 years ago. I waited 6 months to see them. They told me absolutely no pain meds. Even though I was given a week’s worth by my primary doctor that I made last 6 months. It was the only thing that helped cut my pain in half. I was scheduled for injections and my insurance denied it. They wouldn’t see me again.

   I moved to Ohio. I’ve been here a year. I fell down the stairs in October of last year. I was sent home with a week’s worth of pain meds, which I still have 2 because I took them when I was in so much pain I wanted to die. This is the 2nd time opioids saved my life. Now here I am, 8 months later. I’ve been trying to get into pain management for 3 of those months. They keep pushing it out further and further. But what does it matter because I know they are just going to blow me off … it makes me not want to live knowing I’ll be suffering every single day of my life because some damn doctors make these serious life choices for us.

   There is something that can help me but I can’t have it. I never got addicted. I paced myself and it still wasn’t good enough. No human being should have to live this way. I have 4 kids. They take care of me. I hate that they have to. I could have a decent life if I was on regular pain meds but people who abused it screwed it up for us all. I pray every day for the pain to go away, or a doctor to help me.

8. I am currently 35 my back dropped off at 30. I am in constant pain my doctors don’t care they say sorry we would need to send you a methadone clinic to be treated like an addict and you don’t want that speech. That said I am tempted to see what a clinic would do for me if they would treat my pain consistently. But I fear they would try to remove me from meds.

9. I have been a pain patient for 4 years. Doctors have no compassion because they aren’t allowed to. That’s because of the laws and all the incorrect media disinformation as to what the problem really is. They gave us marijuana which is sometimes helpful but want to use the old paranoia of drugs and the drug war mentality from pot to opioids. I once agreed with that mentality that opioids were so dangerous that it should be eliminated, until I found out firsthand what always being in pain and taking the medication is like. It’s not what you think and doctors need to realize that no matter the training they won’t know what it’s like without personally experiencing it themselves. That said they all can’t have that understanding but the laws make it impossible for them to make individualized judgments. So I get the same treatment as the next guy. However ANY doctor will say it is a individualized situation with pain meds.

   So why are the laws in direct conflict with reality? Medical boards and the federal system just protect the industry of pain doctors and not the patients. They treat us as expendable and every time they make someone kill themselves it just backs up the dangerousness of it. They actually make the use more dangerous than it would be if doctors could prescribe the way they want. Quit killing people in chronic pain, and quit making it harder to get the meds I need to live and not be forced to get it from the street. It’s being made even more dangerous from because of the add ons to get it.

   As you can see if you read about it this drug is powerful and it needs some supervision but nothing as close as what they try to do now. It’s basically a police state mentality that has taken this industry over just like a lot of other things. The police aren’t doctors and should let doctors be doctors and patients be patients. Not you’re the junkie and I’m your very conditional supplier who really can’t help you because I can’t give you enough of what you need without some bell going off on someone’s computer that such and such individual just exceeded what the average person needs. What a waste of money and resources. Hopefully they will be defunded or woken up to what medicine in a free country looks like. Absolutely one of the biggest problems today. Maybe someone in the media will notice and maybe read what they are reporting on and include something for the SUFFERING PATIENTS WITH NO VOICE LIKE ME!

   I think half of all patients in the military that kill themselves and it’s a lot, are in some sort of opioid treatment program. Probably an injury they got fighting for our freedom. How do you think that person feels? Needless pain so some politician can score points on the graves of sick people, cool huh? They need to get this run correctly before everyone is a real junkie and then you will have lost the battle of what you are trying to do. It’s better they get it from a doctor but not if they don’t give you enough to get out of bed or off the floor. In addition they aren’t even trained in the stuff they are treating. That’s dangerous as well.

   Good luck to me and the rest of us! To bad it’s hard to communicate while in severe pain. That’s the part being taken advantage of. The medically silenced. The ones who can’t communicate or fight back because of pain. Imagine what that feels like just for one minute, then multiply by 60 then by 24 and that by years, that’s what it feels like every day! Long term pain is more dangerous to your body than opioids when not greatly overused and eventually will kill you from the stress. Stop medical oppression and licensed murder now if you have any compassion. Join a group, send letters, talk to the media, and make sure they get the facts correct because very few do.

10. This must be the 10th letter I’ve written about my story, so one more I will add. 2005 had a Full Neck Fusion, which left me with no discs in my neck and ended up with severe nerve damage, and arthritis. The pain is a burning sensation 24/7 with no let-up. I can’t look up, down or side to side, and when I do turn my head I hear a click, click and my neck moves like a robot and is so stiff. Found a great pain management doctor for 15 years, she was excellent in the beginning, then the opioids came into play. Was forced to be tampered down to practically nothing. 3 long years of weening down and with no pain relief. I am house ridden, can’t drive, clean much, don’t sleep and I walk around like I am 90. The law took my life away and now I am being tortured by pain 24/7. Please someone hear our cries of pain and be humane. I didn’t ask for this and I am not a criminal looking to get high, I am looking to live with little to no pain. Help me, help us.