Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. My husband had a spinal fusion that went bad 3 years ago. If it wasn’t for his pain medication he wouldn’t be able to get out of bed to play with his kids.
   I have a bulging disc and 2 herniation, I LIVE in pain.
   We are treated like addicts because we ask for some relief from the unending and torturous afflictions that rules our every waking moment.
   We are both adults and fully capable of medicating ourselves probably.

   I don’t like being treated like an addict. I don’t like being treated like a child.

2. My husband was electrocuted because someone else made a mistake. He survived with many injuries. 9 major surgeries and permanent nerve damage. 17 yrs…every day in debilitating pain. The pain was managed until the opioid crisis. Since then he has been treated like an addict and we pay his pain doctor each month to torture him. Doctor still gets paid the same amount as he had been. Maybe someday my husband can enjoy his life instead of surviving one day at a time.

3. I’m a 57 year old male with nearly 40 years of pain issues. I have used prescribed opiates for the last 20 years. In addition to being a pain suffer, I also spent nearly 6 years working directly in a pain clinic as an x-ray and fluoroscopy technologist. It is both of these life experiences from where I speak.
   Honestly, I never imagined how a single type of patient (pain sufferer) could ever be so discriminated against. I’ve seen and personally experienced so many abuses in so many forms that I would have to write a book, a thick one, to explain the details of my claims. What I have witnessed and experienced has left me cynical and disgusted with the pain treatment medical field.
   As a patient, we are at the complete mercy of our Doctor(s). As pain patients, we are vulnerable to a profit-oriented pain industry. I have found these realities to be a source of stress whereas it should be an affordable source of caring and healing.
   The “Opiate Crisis” and the efforts to combat have literally ruined lives in an adverse way, and it’s frustrating that no one is listening to the numerous stories of negative impacts from this new American war. What I have witnessed is best described as cruel and uncaring.
   What I found most often in this relatively new medical industry (Pain Management), is it’s ripe for abuse. With the Governments demands to cure this so-called crisis, it has opened an arena of corruption. And we, as pain patients, are taking the brunt of it.
   As legitimate pain patients, we need to stand up, stand together, and fight the indifference and bias against us. If we don’t make this a political effort, nothing will be accomplished.

4. I have struggled all my life with pain and still was a functional person in this society and held back in slit of meds just so I could function after I was prescribed my meds. Well now they were taken away and I’m a vegetable struggling to try and function. I started young when I had polio, but I still worked since I was 16 as a hairdresser, then the inoperable disc in my back and neck, still pain. Cleveland Clinic diagnosed on top of everything else, the throbbing feet now, I have fibromyalgia and post polio syndrome unable to work but still trying to function.

   But now with all this my meds are taken away, the steroid shots don’t work anymore so I stopped them, now my pain Dr. is saying his hands are tied because of the CDC, I can only have this medicine no one has heard of. He has a paper telling him I have to let him try shooting in my spine to try and help with the pain, their rules. I could have nerve damage and if this doesn’t work then I have nothing. The CDC rules his hands are tied.

   I am sitting here now in so much pain understanding why you have heard of a person already killing himself because he can’t live productively in a wheel chair because his meds were taken. Because they won’t go after the dealers and clean the damn streets up they come after us. My doctor says they are coming after us because they know where we are. The money they spend here so the junkies get free needles so they can shoot the meds up, the money on narcan in all the EMT trucks to bring the junkies back, so they think to take our meds away makes them look like they have a hold of addicts? All the people doing in right with their doctors are now on the streets buying it and making those dealers richer and bringing more in. What have you accomplished? Let the media explain all this to us and the public and then you explain it CDC!

5. I am 36 years old. I have Cerebral Palsy and use a wheelchair. I’ve been a pain medication patient since 2015. I was given a prescription narcotic by my primary care physician and had round the clock relief for two years. After that, the medication I was given start losing its usefulness and I was referred to pain management for something stronger. By then we were in the middle of the 2016 CDC guidelines and that’s when my life changed. It took me a year to get into a pain management clinic (during which time I received ZERO pain medication besides OTC drugs) who insisted I do pain management injections in order to receive medication. I stopped going to the pain clinic because every time I had to get a procedure I had to pay the surgery center a $300 copay, which I couldn’t afford. Right now, I have a Primary Care clinic that will give me the smallest dose of a narcotic. It gives me relief at night, but I don’t have anything during the day. This has absolutely destroyed my life. I am practically homebound except for doctor’s appointments. I’m lucky if I can shower myself once every 7-10 days because of my pain. (Before this, I was completely independent in my own home going to school full time working on my master’s degree in Sociology). I long for the day when I can receive pain medication that will help me around the clock again so that I can resume my normal life.

6. 50 year old disabled nurse, I’m a grandmother, wife and mother with debilitating intractable chronic pain who just wants to live somewhat of a normal life, a quality life with tolerable pain which is the goal of pain therapy!! I suffer with multiple debilitating chronic illnesses causing this debilitating pain CRPS (RSD), small nerve multifocal neuropathy, fibromyalgia, severe osteoarthritis, DJD, bulging L4 to L5 nonoperative among other things.

   Up until the 2016 guidelines came out I had after 15 years of suffering and trying all types of non-opioid treatments after over 56 or more injections of steroid that were at one point forced on me by that pain doctor at the time just to receive small amount of pain meds which internally damaged my hips causing avascular necrosis which I unfortunately needed bilateral hip surgeries and since had 6 total hip surgeries. I also attempted to use many types of other non-opioid meds otc and prescribed without any relief. It wasn’t til I finally found the right doctor she started me finally on the right opioid pain meds and after much trial and error finally was placed on the right meds and doses and had somewhat of a normal quality life with tolerable pain til the CDC guidelines came out and my hell began again.

   I now no longer have that quality life losing more and more every day. This senseless witchunt against doctors pharmaceutical companies and patients needs to stop. This blame game needs to stop. Other illegal drug crisis will continue and addicts will continue to addict to these illegal drugs, overdose and die. While pain patients will continue to suffer and be tortured like myself. I feel lucky in the fact that I still get something even though what he’s giving me now is very much less effective, at least I’m still prescribed for now. If this continues that won’t be the case. That’s why I go to every Don’t Punish Pain Rally I can in PA and speak out about the ignorance, torture to millions like myself the forgotten ones in this opioid crisis. Thank you for listening.

7. After pleading guilty for a trumped-up federal marijuana offense (recreational marijuana was already legal in Washington State) I was forced to stop using marijuana to mitigate chronic level 3 back pain caused by an auto accident. My board certified physician recommendation of medical marijuana use was rejected by the federal court. After suffering for four years (7 months of that time I was incarcerated) with support of my physician I am in the process of indicting the DEA in civil federal court for causation of pain and suffering also cruel and unusual punishment. There are seven other indictments related to the federal prohibition of drugs including negligent homicide, child endangerment, creating attractive nuisance, causing mass incarceration, and depraved indifference to homelessness. We are in the process of recruiting a former US attorney to represent all victims of the war on drugs in open federal court. The former US attorney is a personal friend of my family and wrote a letter of support to the judge for sentencing hearing during my case. We need signature support from victims, advocates, and the organizations they represent to help motivate my attorney friend private law firm to take this case. We would like all victims of the war on drugs to read the indictments and endorse our plan to sue the DEA by Email. We can be contacted through Twitter account Nat Turner Revolution or Email louisterry1959@hotmail.com For our plan and more information. Web page coming soon.

8. I feel so alone and isolated. There have been times I wanted to die, but my 5-year old son keeps me going. I get up every day for him.

   About two years after he was born, I had a car wreck. I hit a coyote at 60 mph and ripped the radiator off my car. The doctors told me I had the spine of an 80-year old and needed a double level fusion in my neck.

   I was 34 then and in tremendous amounts of pain. But after reading online stories in spine health forums, I was skeptical about the surgery. Everything told me to wait. So I did, for a year. I saw three surgeons and a neurologist. They all told me to have the surgery.

   I live in a small city in southwest Colorado. When it comes to opioid pain medication, all the doctors here seem to have taken the stance, “We just don’t do that here.” The nearest city is Albuquerque, New Mexico, which means a 4-hour drive for me across state lines, or a 6-hour drive to Denver over mountain passes.

   I never take more medication than prescribed. I am not an addict. I do everything they tell me. I was walking and doing yoga every day, just as the doctors recommended. I took my vitamins and a fruit shake every day.

   After the fusion surgery, things just didn’t feel right. I was in tremendous pain again and this time there was more of it in different places. I told the physician’s assistant at my surgeon’s office and he told me to just get off all the drugs. He said it would help. He told me I would be fine. I wasn’t.

   I struggled for another month before I demanded to see the surgeon. He told me I would benefit from OxyContin and gave me a week’s supply. For the first time since my accident, I was able to work and properly care for my son. My depression lifted. But when I called to tell them that I was doing good on the medication, they said it was time to go back to my primary care doctor and any further medication would have to be prescribed by her.

   I went to see her, but she still did not feel comfortable handling my care and referred me to a pain clinic 6 hours away. I was in despair, thinking that I had crippled myself for life and would lose my job, my son and my husband. All of these relationships were strained at this point.

   The pain clinic helped me get my life back. They are compassionate and good to the people that come through their doors. It’s a common misconception that pain patients want to take medication. We don’t. We just want some of our lives back and pain medication helps us have that.

   A year after my fusion, the surgeon met me again. The fusion had failed, and he wanted to do a revision that would be more painful than the first. He also told me he thought my pain might be caused by fibromyalgia. I’ve never been so angry. I have pain because of my broken neck. Pompous arrogant doctor with no aftercare.

   Here is my dilemma, I’ve gotten better care in a big city, where they do not treat me like an addict. I’ve gotten my life back. At first, I was able to go there every three months to get my medication, but with the laws changing, they now say I have to go every month. Driving 6 hours both ways with a 5-year-old and a broken neck is hard. But quality of life and pain are great motivators.

   My experience has left me with so much anger towards doctors in my area. It seems their Hippocratic oath has been trumped by the opioid crisis and fear of administrative action. I do not tell people about the medication that helps my quality of life for fear of judgement and stigma. Unless they have been through chronic pain, they simply don’t understand.

   I wouldn’t wish this on my worst enemy.

9. I’m 35 year old husband and father of 3 young children. At the age of 18 I was thrown through a wall and ran over by a truck. After two knee surgeries, the truck cracked my knee cap, and trying other alternative options for my pain I went to a pain management clinic. In the doctor’s words I had the lower back of an 80+ year old man at 25. We started with minimal medication, physical therapy, lumbar injections, and burning nerves in my back to try and control the pain. The doctor had been able to make it bearable with medication, but once the “crisis” and new laws came about my medication has been cut in half. Needless to say it’s not only affected my life, but also those I care about. I’ve gone from being the fun loving dad, husband, and chef to having to tell everyone sorry I can’t play today kiddo, I’m sorry I can’t help you at home, I did too much at work. Sorry boss I know I’m screwing up I’m just hurting really bad. I’ve held out hope that the powers that be would see that their over-reaction to idiots is hurting chronic pain suffers, but I’ve finally had enough. Being treated like a junkie and the constantly changing laws (doing anything they can to make it difficult to obtain properly prescribed medication) has gone well beyond my threshold for idiocracy. It blows my mind you can show up to work stoned out of your gourd after smoking a joint, but god forbid I take pain killers. Something needs to give…

10. I would like to comment, since being a chronic pain sufferer for years, I’ve seen the drastic shift in treating pain of late. I suffer from pinched nerves, stenosis and carpal tunnel. Clinics are reducing needed meds to half or less.

    I’m an older adult simply trying to function properly.

    The scrutiny we endure is way below a fair means of treating patients.