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.
Official Site
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.
Why isn’t anything getting done? I’ve been writing letters to politicians for over 4 years, how long are we supposed to hang around? Stuck in bed now have to battle bedsores, 53 years old. I thought maybe it would be possible to get a couple of years of life in. Can’t lay in bed forever. It’s so damn irresponsible what they have done, the junkies have options. The patients don’t have that choice. Maybe if everyone’s medicine was taken away for everything, since chronic pain patients don’t need medicine, no one else should have to need it either. Going to Hell would be a holiday
I have a severe and complex case of Trigeminal Neuralgia which came with Cluster Migraines. I have had 4 brain surgeries to somewhat help with the pain. I have had this for 19 years. It is classified as the worst pain known to man. Of course it just added to other medical issues, but it’s the only one to take me down in an instant with no warnings. I’ve had to advocate for my medications because at first they just kept piling more pills so that I could barely walk and treatment wasn’t helping. Since my neurologist at the time refused to take away the pills that weren’t working, I took it upon myself to wean myself off them slowly. When I reduced the number of different meds, I was more alert.
I moved and found a neurologist that I’ve had now for 16 years. He actually listened to what I was saying, instead of telling me how I was feeling. He helped me go from 30 meds for that disease to 4. I was extremely thankful and trust him dearly. Opioid treatment is the only thing that helps the Cluster Migraines. Plus after my third brain surgery, when the weather’s barometric pressure changes, my head where my incisions are on both sides of my head, indents severely and puts extreme pressure and a feeling of electrical ice picks stabbing me. Opioids are the only thing that helps break a lot of the pain. Doesn’t help control my Trigeminal Neuralgia; for that I am on both Lyrica and Gabapentin. I also am on meds for PTSD which includes Xanax.
When I moved to Florida 6 years ago to help the progression, I needed to go to Pain Management doctors. They kept trying to increase my opioids and add Fentanyl (which scared me) and I refused. I have been leveled on what works for me and didn’t want more dose. They wanted me on higher drugs, and the next time treated me like I was a drug seeker or addicted. My background is in Law Enforcement, so I ended up telling them off. Went to several Pain Management clinics because of different reasons. Was so upset and took it personally. I went to my neurologist who is in Minnesota. He mailed me my prescription each month. Since mail was delayed and slow, I decided time to try in Florida again.
I did find a wonderful doctor 14 months ago. I then started having problems getting my prescription, because Walgreens got a new Pharmacy Manager. Now I have to argue with the pharmacist, and I don’t have a problem making a scene when someone tries to belittle me. He has an issue with my being on both Lyrica and Gabapentin. They have insisted on speaking to my Neurologist personally, his nurse or assistant. He was not happy and took it out on the pharmacist. He supposedly noted it in my account so there would be no issues. Yeah, that worked for a month. Second call was brutal because the pharmacist tried belittling my Neurologist, who has over 30 years of practice and is the senior neurologist in the clinic.
Every month I still go through this with those meds. Then 2 weeks later I have to fight with the pharmacist to get my opioid and Xanax. The pharmacist even tried to bully me into accepting Narcan in case I overdose. That is calling me an addict, so it became another scene to the point they don’t ask me that anymore. I’ve been told by the pharmacist that Lyrica and Gabapentin are killing me; I told him if that’s the case then I should have already been dead 19 years ago. I have enough medical knowledge and have worked in poison control. So I am very direct and remain firm, but polite. I can fight for myself, but I shouldn’t have to!
I hate being lied to by someone thinking it’s going to intimidate me, I know so many that will back down instead and end up in tears. I hate seeing people bullied and treated so badly.
I suffer every day, every hour with electrical stabbing in my face, ears and head. I have nerve damage from head to toe. I am never pain free, even with meds.
Knowing so many who have Chronic Pain and need opioids to be able to barely get out of bed, or to live some type of life. I believe in quality of life, not quantity. My doctors will drug me up with all these meds but with all the side effects, it’s no life.
I am now starting to truly fight for those who can’t. I know how badly doing so will affect me, but it’s worth the added pain to fight for everyone’s rights of getting back the doctor-patient relationship. Your PCP knows you, knows your actions, tendencies etc. Pain Management doctors don’t know you, they don’t look at the paperwork or your records.
The government doesn’t give a hoot about real pain patients unless they’re not dying fast enough. Junkies are cared for without end. A nearby city houses, feeds, and delivers the drugs of their choices to them so they won’t go without. It’s disgusting what is happening. Anyone who cares at all needs to join with the pain patients to be the loudest voice possible so maybe some better change will happen. I saw pain patients come out to the rallies in their wheelchairs, walkers, and scooters. They need to to keep coming out to be seen and heard. Even come out on gurnies if need be so all can be seen and heard. Because if we don’t speak out for ourselves who will?
I have cirrhosis stage three, upper and lower scoliosis, spinal spondylosis, spinal stenosis and epilepsy. I also recently had surgery. I had a full hysterectomy and a uterine, rectal and bladder prolapse surgery. I work as a caregiver for disabled children and adults. Two months ago I was told that I had to taper that they were tapering down the whole clinic due to CDC and DEA guidelines! I have followed the rules of my contract 100% and I feel like I am being punished for others actions. I am terrified that I will lose my job and housing and be living in a tent, in pain. I will have no quality of life because I can’t get out of bed without them and my stretches. I wrote to Dan Sullivan and all he wrote back was something about Covid. It had nothing to do with pain management, I’ve joined this wonderful group, U.S. Pain Associates. I’ve written to CDC and DEA. If anyone knows who else to write to please post it and I will write to everyone I can. Thank you so much, Angelita Torres
I’ve been out of work for years only working when possible since my doctor took me off pain medication. I’m now homebound fighting severe pain and suicidal thoughts because of my pain causing me to not work, showering regularly, missing so much of my kids’ life events of their success etc. Being on hydrocodone with some tramadol to help the between pain was very successful for me but doctor got scared and took me off. I have torn ligaments on my neck and ankle from many car wrecks through my life so my endometriosis, fibromyalgia, scoliosis, osteoarthritis, and disk disease are severe suffering. I’m broke so I’m fighting to keep a roof over my head. I don’t have legal help to fight for me, if there’s a way to help me please contact me.
I have severe fibromyalgia, connective tissue disease and a spinal cord injury in my neck area. My pain is constant. I require daily pain medication therapy in order to have any function and quality of life. Prior to my illness, I was a practicing RN, and I loved my career. Currently, I have a doctor who is willing to treat my pain and also respects my dignity as a human being. I am lucky. I know my doctor could be pressured to stop treating my pain at any time. Prior to each appointment, I wonder if this will be the day my doctor dumps me.
There is judgment and stigma labeling chronic pain patients as addicts. There is legitimate use of pain medications as medical therapy when other options have been exhausted. Some pain conditions are not curable. Pain is hard to bear. I struggle with suicidal thoughts. Each day I have to decide if I can get through another day of pain. My suicidal ideation is not depression-driven, it is pain-driven. Society does not offer any compassion for chronic illness and pain.
Chronic pain is different from acute pain. Try to imagine what it would be like to have pain every moment of every day. I describe pain in terms of sound. Sometimes the pain is low volume in the background and there is mild distraction. Sometimes the volume of the pain intensifies, amplifies and radiates, overwhelming the senses and making it impossible to function. Sometimes the burning pain feels like the body is on fire. Pain medications can lower the volume of pain and allow functionality, thereby improving quality of life. Other modes of complementary pain therapies can be of some benefit but are expensive and often not covered by insurance.
I have been victimized by pain management physicians who prefer to do invasive and expensive procedures and spinal injections. One doctor wanted to do an epidural injection on my lower spine, which did not hurt. Luckily, my insurance company denied the procedure because it did not address my primary complaint which was neck pain. I say luckily, because if the procedure had been approved and I declined to follow-thru, I would have been labeled non-compliant and likely would have been discharged from the clinic without further pain treatment. I reported the incident to my primary care doctor, so he took over my care. I am no longer able to work and financially my life has had a downturn.
I was diagnosed with a rare placement of Endometriosis at age 15 after coughing up blood intermittently for 2 years with no known cause. They finally found that in my short years since becoming a woman the endo spread to my colon, diaphragm, liver, and up into my right lung. After 19 isolated ICU stays thinking I had TB or some form of lung disease, they tracked it to my period and we ended up finally finding it by scope in 2007. From then on out I have had 3 collapses, 5 pulmonary embolisms (from the countless hormone treatments), and one DVT. Just this last year after a rough pregnancy with my son who was born early at 3 pounds 2 ounces I ended up coughing up 55 CCs of blood within an hour, and they rushed me to the ER (in May 2020 so Covid was popping).
I meet with a cardiothoracic surgeon who thinks the glassy stuff in my lungs is either my endo getting so bad we can see it on a CAT scan, or it’s Covid because the pneumonia that goes along with it looks similar. I spent 3 days in the ICU fighting with them to just give me the allotted pain meds I get at home, let alone a stronger med because I was obviously in a flare and breaking my ribs I was coughing so hard. Fast forward to my Covid test coming back negative and then planning an open thoracotomy because they finally see where they should attack, and I’m scheduled for a right upper lobectomy. I am told they try not to do it invasively like that anymore, but since he will have to stick his fingers in and feel around for the margins they will be sure to make sure I’m comfortable because the first few weeks will be rough.
I already had to have major surgery and do the hospital healing alone. The nurses were in there the bare minimum to avoid Covid and would speak to me by phone if they could get away with it. They always just rushed in and told me to hit my button for the pain. My hair got so knotted we shaved it the day I left the hospital. I was there for 3 days and the last day before leaving they lowered my pain meds to a LOWER dose than I was on before the surgery just to keep up with my normal pain. I tried to explain to the nurses about tolerance and being a pharmacy student before parenthood I thought I could get my thoughts across professionally enough to get them to see I wasn’t medication seeking. I was just used to the meds I was on, treating my normal pain, not the pain from opening me up like a lobster with 3 already broken ribs and having 2 chest tubes still in, draining the funk out and pushing on all those surrounding tissues and nerves.
They literally wheeled me to my husband’s care and handed him the discharge instructions – didn’t even ask him if he had questions about the remaining tubes or follow up care for my bandages, or when the nurse would be there. They actually forgot my heart monitor was on and then we had to go back from halfway home when my chest started beeping and I called them to see what was up. Fast forward to being home 11 hours post-op and I can’t move or breathe and I end up in the emergency room. Surgeon calls the nurse and says I can’t be in that much pain. He was not doing his homework, and just assumed I was an opiate-naive patient. I relay to the nurse to call him back and check my medical history: I’ve been on the med at this dose 4 times a day for almost a year, and my pain was still so bad I decided removing my lung would help me care for my family more than the meds. It was like all common sense went out the window. The nurse refused to bother him again and gave me an IV since I hadn’t even drank water from my chest pain since I left the hospital.
I don’t know what to do anymore. They see the proof and say things like, “I’m such a warrior and they couldn’t live with this type of debilitating pain with a 9 month old, and a 5 and 6 year old. They say I’m inspiring but they question my honesty when I am telling them I can’t deal with this pain. They call all of us strong until we can’t be anymore, and they see how many chronic pain sufferers just give up by killing themselves by their own hand, or by seeking help on the streets or in the bottle.
These doctors are afraid to uphold their Hippocratic Oath because they hear all these horror stories of young doctors losing their licenses before the ink had dried for overprescribing, when that story is just a lie. I do believe there was a time when maybe some doctors were a little lax, but why does that have to mean I don’t deserve a quality of life, or my husband, or our kids, our dogs, or the houseplants, at that! I can’t even keep up with all that sometimes because I have been up for 4 straight nights falling asleep crying into a cooling bathtub just praying for a few moments of peace.
When they compare medication to a crutch it makes me laugh! What is a crutch for? To help you stand or walk. It’s not going to fix your leg, it’s there to aid you while you do the healing – if there’s healing that can be done.
I had a work related injury for over 15 years. During that time I went to pain management, following all the rules, and continued to work for 5 more years in my profession. I was medically deemed unable to continue in that field due to sleep apnea. For 7 years I applied for and was denied Social Security Disability and told to find other work, at which point I started out making much less than before. Still continued my pain management until this week. John Q. Law charged my pain doctor with over-prescribing meds and he closed his practice. All of us are now discharged and receiving our records. And my family doctor won’t prescribe the pain meds I’ve been on for years, although he does prescribe to his other patients. I run out tomorrow with nowhere to turn.
I have been dealing with a progressive disease for almost 20 years. I have a congenital heart condition that interacts with biologics and some other possible treatments for my AS and psoriatic arthritis also have been told recently I need to do some testing because they believe I also have ulcerative colitis.
2 years ago I moved to Lane county, Oregon. I was forced to taper down over half of the quantity/dosage I was on. I have been miserable for the past 2 years. Prior to moving I was on a great treatment plan, I was still having daily pain and had flare ups, but it was overall manageable with the pain medication. I have had days where I think, “I just can’t do this anymore”.
I see my kids and think how unfair it is to them… they nor I asked for my body to become so sick and disabled. I didn’t wake up one day and say, “You know what sounds great… having my spine fuse together slowly on its own, causing excruciating pain any time I try to turn, bend, stretch, tie my kids’ shoes, etc. Oh and for kicks and giggles let’s have my hips, pelvis, feet, hands, neck and every other bone ache, throb, crack, freeze up, heat up and swell, and let’s add that charley horse sensation come and go up and down my legs. Ohhh, but don’t forget to add the funky patchy goosebumps up and down my legs with that horrible numb, tingling and burning sensation. But don’t forget to add some stomach/intestinal issues that just cause me to sit on the toilet crying in pain. Oh, hey, that’s right, don’t forget the hemiplegic migraines. You know, being born with a heart condition and having several open heart surgeries, cardiac caths and stents”.
I thought like many people, that when I grew up I would get married and have children and have a good life. yes, my life is good. I love my kids and in all honestly if it weren’t for my kids, I would have given up a long time ago. They give me a reason to fight and to push myself each day. What breaks my heart is there are medications out there that can take my pain away just enough so I can focus on life, on my kids and my family and have a better quality of life. I had a glimpse of that 2 years ago. I will keep fighting…
I am permanently disabled. My condition will just keep progressing, nothing can be done o slow it down for me. The few medications that would not compromise my heart? My liver did not react well to them and I was pulled off. I have tried everything: injections, otc, therapy, spinal injections, therapies of all different kinds, acupuncture, chiropractor (which actually damaged my neck and back worse, causing more problems).
I am now 42 years old and am one of a few oldest living/surviving people with my heart condition. Many doctors say “It’s all about giving you a good quality of life and controlling the pain.” Yet, they limit me. I know the right meds, the right dose and combo, I was on it over 2 years ago.
Each day I wake up just trying to make it through. I’m sick of being in pain, I am sick of telling my kids “not today”, because the pain is so bad. I try to hide it from them, but they can see it. The hardest thing is having my 10 year old son have to assist me walking, or standing… It’s not time for them to do this… they are still too young, and so am I.
I need better pain treatment so I can be in less pain each day and give my kids the mom they deserve.
I’m sick of my pain and diseases taking from my kids, but most of all I am pissed because IT DOESN’T HAVE TO BE THIS WAY… Doctors, CDC, government – need to STOP punishing the pain patients. I pray God will open their minds and hearts to see we are not the problem.
I have had 3 back surgeries on top of a spinal birth defect which affects my entire spinal column. I have experienced pain my entire life. Since January 2019 I have been jerked around by the pharmacies, the insurance company and I’ve seen 6 different doctors in 20 months; I am now only on a fraction of the pain meds (prior to January 2019 the pain meds I was on was working perfectly). I have over 1/3 of my spine fused with rods, wires, screws… I am in constant pain that affects my daily life.
I literally have zero say in what my doctor prescribes me. If I beg him to please not decrease my meds, he totally avoids my pleading and tells me I have to come back in 2 weeks to get more shots in my back… If I do not participate in those shots, shots that literally know NOTHING about; I do not know what they are. I do not know if they are FDA approved. I do not know the risks, I do not know the long term risks… I do not think the doctors care as long as they get paid.
I have been over-billed, I’ve had to do expensive testing that I never, not once, got the results of. I am ruining my stomach with Arthritis BC Powders and other OTC medicine that causes me to vomit and feel sick to my stomach… None of the options I have work well and the long term effects are MUCH worse than the opiate medicine that DOES work. I am So. Sick of being labeled with the title of Opioid Use Disorder. I do not like labels. Everyone has a label for this that and the other. I am not a mental patient. I am not sick. I do not have any “Disorders” or “Diseases”.
I am simply a 40 year old woman, with a family of 4. I have been on disability for 10 years. Surely that means something when standing before a medical doctor… I am a woman, desperate, that seeks functional pain relief and nothing more. My dad is being jerked around and he is 70 years old and has back issues from injuries and surgeries and arthritis and just old age.
Everyone should have the right to pain relief so that they can function in life and simply participate in life. I feel like “pain clinics” and the anesthesiologist doctors see $$$ pushing these injections that we as pain patients are pushed and forced into if we want to keep the tiny amount of medicine we get. It’s wrong to be “forced” to do things that you do not want to do just so you can get a tiny amount of medicine.
I have never bought or sold any illegal drugs… BUT within the past 20 months I have seriously considered seeking out these streets rats to purchase something, anything, to relieve a little pain so I can function. I’ve considered that and I have began to wonder what the future holds for chronic pain patients. I believe the real statistics of those that have gone from functioning in society with pain medicine to seeking out illegal drugs (which is what this opiate crisis thing is about to start with, to prevent exactly what is about to happen) and those that have or will commit suicide will be much greater than those that overdosed from opiates that they bought on the street. I do not believe the overdoses have gone up because of LEGAL prescription medication… I do not believe that is the problem… The problem is NOT the Chronic Pain Patients… because those that have an actual real need are not the ones that are selling those drugs to begin with.