Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. I am a disabled veteran. I suffer from necrotizing pancreatitis, spinal disease and much, much more. I have been totally disabled for 35 years. I was treated as a criminal and labeled a drug seeker by some of the biggest known hospitals and the VA. They totally misdiagnosed me. The VA refused my disability for decades. I suffered and lost everything at a young age. I have suffered in severe pain that most people would kill themselves over.

   I was finally treated with a little more respect when they found a large cyst on my pancreas after a couple decades of being abused by doctors and hospitals. During a procedure with my pancreas they cut a tube, and the sepsis and necrotizing and much more made me a quadriplegic as I fought for my life for 6 months in a hospital bed being tube-fed. Even after that the VA continued to fight me over benefits. On active duty I had gotten very sick from chemicals working with aircraft. It was in my VA medical records on active duty. The VA continued to lie, lie, lie. They will deny, deny, deny until you die.

   I had to pay a legal claims rep a fortune to help me get some benefits through the appeals that took a few decades; all the while I was suffering losing family, homes, jobs, unable to work, only seen as a drug seeker that they could not find the problems, only because they refused to look properly and blamed me for their failed tests. The war intensified on pain patients and we go through all kinds of phony treatments where they don’t do anything but talk. They just try to keep you away from pain-killing meds while calling you names. I had one doctor at a very well-known hospital here in the USA that said my pain was actually me having metal problems and said I was most likely sexually abused as a child, which was a total lie. I was yelled at by a GI doctor too and called a liar. I have been yelled at and subjected to abuse by so many doctors I lost count. I wish I could name them here, but the website owner would probably block me.

   I am still being put through tests to make sure I do not stray from the limited pain meds I get, and have to be sent to these phony pain clinics. When these clowns get older, if they get sick they should be refused pain relief. I lost sympathy, after decades of being abused by the medical community and everything I went through and still go through. This phony war on drugs punishes the sick. I have traveled the world before I got real sick and can honestly say the USA is horrific in the way it treats pain patients. We have barbaric medical abuse on pain patients in the USA.

2. I’ve been diagnosed with Chronic Pain from cancer treatment. Put on opiate therapy that allowed me to have a quality of life. I have kids that I can’t be there for because I’m very limited. I feel like it’s my fault. I’ve been misdiagnosed with cancer and BrCa 1, bilateral blood clots, and was left with agonizing, searing pain. I have had my life stripped away by being forced against my will. I lived on a steady dose for years and was able to be active. I’ve developed more issues since the force taper. I’ve had my breast removed without extra pain meds for pain. The doctor refused to go more even though the surgeon thought I needed it. The pain meds I was already on was for my current pain condition not for the second surgery. I have suffered, my family has suffered and have been at the end of my rope. How do you get a doctor to listen and work with you. My doctor is cruel by making me wait until the day after pain meds are supposed to be done, and that’s when I get them. How is this legal. I’m treated like a criminal.

3. A family member was diagnosed with cancer at the end of 2020. During the entire treatment, they experienced very severe pain which the doctors at the hospital told them to take “Claritin” for, which is an allergy medication and not a pain medication. I heard my family member suffer from immense pain from the cancer, and not once during their cancer treatment were they prescribed any type of pain mediation. They passed away in 2021. They were suffering in very severe pain up until the last minute. No pain medication was ever prescribed to them, and it was very traumatic to me to watch my family member suffer so much. This is absolutely inhumane and cruel.

   I also have very severe chronic pain as well, from a pain condition that’s known to cause some of the the worst pain known: CRPS/RSD. I have been continually dismissed by doctors and hospitals who say I need a psychologist for my chronic pain, as if it were in my head. I am housebound and bedridden now. I was more functional when I had opiate pain medication which I no longer am able to have. I’ve been sentenced to a life of severe pain, having become a prisoner in my own home, as I’m unable to leave it. I also live alone so I have to suffer alone. I miss being able to have more of a life, with friends, and not confined to my bed and home. The way chronic pain patients are treated is absolutely cruel.

   One of the times I ended up in the ER due to excruciating pain, not only I was treated poorly and dismissed, the patient in the room next to mine was in such horrendous pain crying, screaming, and begging the doctors for pain relief, the entire time I was hospitalized. Not once was this patient tended to. Not once was this patient given pain medicine. Instead they were left to suffer in agony and reduced to crying and begging the doctors for many hours to relieve their pain. It’s inhumane.

   Please stop the war on patients. It’s cruel and ableist, and causes unnecessary loss of life, loss of livelihoods, suffering, and death.

4. I was diagnosed with fibromyalgia 20 years ago and had to leave my job because of it. I have to take pain meds daily to function. I’ve been screamed at, physically threatened, told I’m a liability and use my meds as a crutch, doctor yelled at me to take myself off pain meds, refusing any direction or support. To add insult to injury this doctor and helpers spread nasty gossip all through the clinic about me. I caught them red handed and left, new doctor has force-tapered me claiming it’s all in my head. Abusing a pain patient is common, accepted easiest thing to do.

5. I’m Canadian and have felt the adverse effects of the opioid crisis. I’m a chronic pain sufferer and have been for many years. I have CRPS in my left foot. It IS the most painful disease going. I’m an RN from the old school of caring and empathy and relief of pain – not so anymore. I’m ashamed of my profession that they can be so dismissive and cold. Shame SHAME SHAME on all of us!!!

6. I am here searching for a way to stand up. You have to go through so much BS from a pain clinic, and the pharmacist look at you sideways like you are a thrill seeker, drug addict or dealer. All because greedy doctors made a killing off of over-prescribing. So much I could say. But will anyone see it that can help me help myself and others? I haven’t been cut off yet. But I know it’s coming. Anyone on disability and proven medical records to back it up should be cut some slack on all this craziness of how it’s all run. I think the street dealers are losing money on heroin and cocaine. Or WERE before all this started. Now people are resorting to that and are going to die just trying to get relief.

   I say we all pull together and try to do something about it. It’s not fair to us that need meds to function. The over the counter meds kill my stomach and do not help. I want to live my life and not worry about getting kicked out 24/7 or all the BS that comes with it, and being treated like scum. From all concerned. It’s a crying shame is what it is. And all the big pharmaceutical companies have been sued for billions – and recently. That’s like suing an automaker because a drunk driver killed someone. No, it was greedy doctors that caused this. All of it. Now, we have to suffer. Some idiot in New York thought this was a good idea back in 2012, and here we all are. That’s what Google said back then anyway. But we need to form something and take it to court. We need smart, hungry lawyers to go with us. Period.

7. My pain started one morning in 2007. I was working, and had a life. Woke up one morning and had a stiff neck. Test after test was done and it showed I had nerve damage in my right arm. Then, an MRI was done and confirmed a rather large herniation at my C5/C6 vertebrae. I had my first surgery in November of the same year.

   I go through 2008 in a lot of pain. Come to find out, the hardware had collapsed, so my neck had to be redone. The doctor didn’t want to do it, but I told him I wanted my neck fixed. During that surgery, screw pieces were broken off in my neck, but the doctor never disclosed this information (I will later get into how I discovered this). March of 2009, they revised my previous surgery, said everything went well and I should recover fully.

   So, I see my pain management doctor for years, primary doctor, neurologist – consult after consult. Injections that never worked, botox, spinal cord stimulator. Still nothing helped the migraines. They also tried a headache trial in the hospital over five days. All that did was make them worse, and several trips to the bathroom. I was told that it my medicine was the reason for my headaches. So I give up those medications, and I still had the headaches. I told them that normally when I have headaches, it’s because of my neck. I was then made to wait for five years. Doctors pulling “There’s nothing wrong with you” and misdiagnosing me. Getting me hooked on meds and then taking them away. Force-tapering or not giving them at all. Then, making me look like I’ve done something wrong.

   So during this time the neurologist wanted to get me off all the meds and do ketamine. I told him that I wouldn’t be able to tolerate coming off it, and he pushed it on me. I finally got an MRI. It showed that osteoporosis and facet joint disease in my C3/C4. But still was left untreated for some time.

   Fast forward to February 2021. I meet another surgeon but actually the one who did my back surgery in 2013. He did a bunch of tests. One of them was a Nuclear Bone Scan. He explained that it showed my previous neck surgery. The areas that were orange or pink show where your pain is.

   One of those areas was where I had my previous surgery. It looked like Christmas morning. I was shown images, but never was fully “explained” everything. April 5th was my surgery date. I woke up from surgery in a lot of pain. I knew something was wrong and they told me it’s because you just had surgery, give it time, arthritis is probably settling. I got ignored. They discharged me with a 100.5 degree temperature.

   When I got home, I took the dressing off and I had blisters. The next morning I started feeling symptoms of a UTI. I spent three days in the hospital altogether. They gave me a prescription of meds at 9 a day, I took no more than 5. (I would have rather went through childbirth, or pass a kidney stone than to have to go through that pain ever again. Because he took a bone graft from my right hip.) They gave me Narcan in case I overdosed. I then got into an altercation with my landlord so he evicted me. Gave me two weeks to move out.

   I did packing, trying my best to do everything as safely as possible. My coordination was off and I fell. When I moved, I did not lift anything. But I started having symptoms: tingling in my hands, a lot of pressure in my neck, exactly were I had surgery in April. So I went to the ER. They discovered that a herniation in my C6/C7 had slightly increased. I go to my pain management doctor to talk to him about it. He says everything is fine. He didn’t even look at the results. At that time I asked for a referral. He told me that if I wanted a second opinion, I would have to do it on my own. Yup, he refused to refer me to another office, then grilled me like a police officer, and everything I said he turned around on me. I walked out of that office, came home and laid on my bed and cried. This was June and I was supposed to see my surgeon on July 7th for a follow up.

   July comes and I go to my appointment. I had my advocate via phone for this appointment. They did X-rays. During that appointment I expressed myself, that I was scared that my surgery failed, because something wasn’t right. Because when I had the MRI in May, it showed unstable hardware and facet joint disease in the same area that was just operated on. He got mad, slammed the computer mouse on the desktop and went out to his assistant asking for MRI because I didn’t believe anything he did my surgery. During this time I asked him when I should get a COVID shot. He told me to not get it because it would slow my healing down. Mind you, he never put this in my chart.

   I got the result through my patient portal. It said abandoned screw pieces – same as in January. He never went over the results, four on right side and two on the left. I then filed a complaint with the hospital and the health department. They said there was no misconduct charges found. But if I wanted to go further, I could, but one of the doctors I couldn’t do anything about due to statute of limitations.

   I had my fourth neck surgery schedule for March 23rd, but the doctor “got sick”. They made me wait a year, then made me go through appointment after appointment just to have my surgery canceled. She even called and begged me to get my MRI on a disk so he could have it for surgery. I had to wait eight days. If I didn’t take the March 23rd date, I would have to wait until April 4th, delaying my treatment longer. Nobody would help me get to the hospital, so I had to take the bus and stay with family so I could get to the hospital the next morning.

   March 23 I had my surgery. They removed 70cc of fluid from my neck in surgery. I had a drain bag for two days to make sure it was drained. First time they drained it in ICU, I had 70cc more. Then the prescriptions started. I had previously been on them from another doctor at 4 a day. They bumped it up to 6 day on top of 20 mgs of Valium. Then one week, they started cutting back. All I was told is you may want to contact your regular doctor if you aren’t comfortable. I WAS NEVER told that weaning was starting. I tried expressing myself and was made to feel extremely low about myself. My symptoms have returned.

   I went to see him yesterday and he blows me off. I’m in so much pain and coming off this stuff again because a doctor who doesn’t know how to taper a medication down safely, shouldn’t be prescribing. He told me in that appointment “they aren’t equipped to do medication like pain management is”. I can’t go through this again. (Being put off like I’m nothing. I go to local ER and I’m treated like a joke, my primary doctor, too). Try and take care dear is what I was told with only an X-ray ordered. No concern that I’m coming down hard from meds but makes sure it’s noted I took them chronically.

   That office prescribed and said I could take them, then treated me like it was my fault. The lecture about pain meds. But Valium is a benzo not a muscle relaxer nor is it used for pain. And that’s what they gave it to me for. They didn’t think I understood. I worked in the medical field. I knew it was for a short time. This is what I was told in the rudest voice ever by a medical assistant on a power trip. It’s so and so’s office and he put these rules in place for a reason. If you’re waking up having panic attacks, that’s not what we do here. (I didn’t start having them until they stopped the Valium.) But she was still right no matter what I said. John Doe for works directly under him and it’s my job to make sure they get enforced. There’s no negotiating. Ohhh he is putting me on a walking regimen. My pain returns after you guys make me come down hard from meds, all he wants me to do is exercise (I used to walk all the time. I know it’s good for you.) Nobody wants to help me. I never asked for any of this but was made to feel like it was my fault.

   I did not ask to be ignored for a year. I’ve contacted several attorneys, even the attorney general, and they cannot help me. This is not fair, it is inhuman! It’s embarrassing enough to have to walk around with scars, but not ones I askeded for. I wouldn’t even have to take the meds if they would have done my surgery right. I’m traumatized and feel completely alone. None of this has been easy on me, but again made to feel like it was my fault. I’m tired of the covering-up and misdiagnoses. I deserve to be treated better than what I have been. These are all “highly “acclaimed doctors too!

8. I have fibromyalgia. Am a retired CNA. I have three herniated discs in my lower back and two herniated discs in my neck. I found a good pain management doctor who has helped me for six years. Now she’s retiring and I can’t find anyone to help me.

   I saw a new pain management doctor two days ago. I’m on a minimal amount of opioid pain medicines that help me lead a somewhat normal life. He looked at me and treated me like I was a drug addict there for pain pills when the proof is right in front of him that the pain is real. Why are these doctors treating pain as if it was a crime? Are we elderly people going to have to suffer for the rest of our lives, just because of some people who abuse pain drugs.

   For anyone who doesn’t know, it is legal for a general practitioner to give out what’s called 90 mg morphine equivalent dose which means they’re allowed to give to you 90 mg of some pain medication legally. My doctor retires in July. I know she’s going to give me three months worth of pain medication prescriptions, but that’s all. I’m going to have to wean myself off my medication and suffer. Until I can find someone who is willing to prescribe me a small amount of pain medication, my quality of life is going to diminish greatly.

   I’m tired of being treated like a drug addict. My pain is real and there is sufficient proof. God help us all. I don’t know what we’re going to do about this problem, but all of us need to speak up and speak up loudly. The government has taken over the doctors’ ability to treat us the way we should be treated – with respect. Pain is not a crime!

9. I got crushed in a machine some seventeen years ago. My right arm was flattened completely, and after thirty-three surgeries later, they did their best to rebuild it. I suffer with severe pain daily 24/7 and lately the last year or so I have been having a hard time getting my meds refilled after the doc has prescribed them – as if these pharmacists know better than my doctor and I do about what I am dealing with.

10. I am a mother of four. I have psoriatic arthritis and my spine in my neck is herniated in three spots. I also have fibro. I am in pain 24/7. I feel like a burden on my young children and husband, and I am in bed more then out. I was taken off of my pain meds because my doctor said the all the doctors were told they couldn’t write that type of medicine any more. I have many doctors, since then I have jumped through hoops, I have let them inject me with all sorts of shots, I have taken the antidepressants and gaba. I have done it all, no matter what I say or how I tell them that opioids was the only time I got a sense of relief, I just get reasons why they cant help me. “You are too young”, “You have kids at home”, “the CDC won’t allow me to write”, you name it they have said it to me. I have done everything I’m supposed to, I tried every medicine out there. I have no criminal record. I just want to have a day where I’m not in pain. My conditions will just continue to get worse. I don’t know how much longer I can take this. This isn’t life.