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.
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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.
I am 66 years old. I have blood cancer (dxed last year) I have been on routine pain management for CRPS related to my service-connected disability. I also have spinal stenosis, Systemic Lupus and structural scoliosis. I have tried acupuncture, spinal injections, and many other non-medication treatments. I have complied with all rules in the opioid contract. I have also sustained 19 fractures from the blood cancer. I moved to Florida and the pain doctor wants to take me off of all pain meds. He said I can go to an outside pain clinic. A patient advocate told me that the VA doctors get incentives like cash bonuses for getting the most veterans off of opioids. I have decided that if this happens I will stop all care and just allow nature to take its course. How incredibly cruel.
You could go to a pain doctor and get help! I’m soo sorry, I hope you get the help you need, there are some compassionate doctors left in this world! Some good ones in Florida, please feel better god bless
My heart just bleeds for you. You poor woman. Don’t give up, I will pray there’s a doctor out there for you that will help you, stay strong. I know you already are, very much so by your story. Keep looking, keep praying if you do, and I have heard there are doctors in Florida oh, I will try to find out where.
My mom and I have been with the same doc for almost 10 years no other doc and we got to that doc by word of mouth from our cousins, we didn’t need a referral. They got dismissed because of doctor shopping and abusing meds, in and out of jail and prison. In the meantime my mom and I every single month passed all drug tests, if asked for brought original bottles empty or not, went to all referrals. I have been under pain management for *PANIC ATTACKS *DEPRESSION *SPINAL STENOSIS *DEGENERATIVE DISC DISEASE *UTERINE FIBROIDS *SPINAL STENOSIS *SEVERE ARTHRITIS IN MY LOWER BACK *SEVERE ARTHRITIS IN BOTH OF MY KNEES I WALK WITH A CANE *3 DISC BULGES IN MY LOWER BACK *2 DISC BULGES IN MY NECK AND THYROID CANCER SURVIVOR. NOW ALL HAVE BEEN CONFIRMED BY SO MANY *MRI’S *CAT SCANS *X-RAYS.
To make a long story short my two cousins were the only ones who knew were we went. My cousins always bothered me and my mom for meds and I’m a live wire so I went to her house and lit her street up. I told her to leave us the heck alone You have been kicked out of so many docs so please leave us alone asking us for meds or to buy them.
The next month I went to my appointment and when I went in the room my pain management doc of TEN YEARS looked at me and said is this your regular monthly appointment? I said yes and he said I receive word that YOU ARE SELLING SOMEONE ELSE’S MEDICATION. I’m in shock and all I could say over and over that it’s not true and he’s 74! He said you’re going to need a police report and I’m going to have to discharge you. I went to my vehicle called the police on the spot. They talked to my doc. The officer said ma’am the doc said it’s not you that needs a police report IT’S YOUR MOTHER! I don’t know what to do. He discharged me cold turkey. My PCP won’t bridge me over and I’ve had five docs turn me down.
This is every area of my life being affected. I even called the DEA and CNT for help for this excruciating pain I’m in, and they said they could not help me. Sir I’m begging you with every fiber of my being to please help me. And the main thing – the doctor was supposed to NOT RELEASE ME COLD TURKEY! Thank you in advance for your time and attention.
Rules are imposed on people not knowing a single thing about them. Prohibition never works.
I have one of the best GPs I’ve ever had. He released me to “pain management” about five years ago. I asked him what are they going to do? All he indicated was he could not write prescriptions for pain.
He was the second doctor who went from an easy-going kind doctor to one that looked like he had a gun held to his head.
He left the practice but I’ll tell you what he left a gift for me – his NP. She listened intently and made sense about short-acting pain medication. You’re just chasing the pain and it doesn’t cover waking hours let alone all night.
She prescribed the lowest dose of patches (lasts 2 5 days not hours but it burns my skin horribly so sadly I had to switch to Opana. A Godsend. Then Big Pharma/Insurance decided it was too expensive, as all extended-relief prescriptions are. I’ve since switched to a 24-hour pull. Still doing great.
It blows my mind that most patients are not taking this. You can’t tamper with it. Some are stuck on chasing their pain. Why? They are all expensive so somebody somewhere is benefiting from it.
We have a hugely corrupted medical system. We are charged $30 a month because these are “specialists” and drug tests (at my age). Labs are getting over $1k each test. Employers are asking for tests before you are even interviewed!
My condition never changes and neither do my brief six-minute conversation with a NP. Video appointments had been used and were free.
We need to go back to doctor/patient trust and flexibility! I’ve never taken anything that I wasn’t prescribed.
Most patients and doctors agree so why isn’t this happening?
My point now is where can I move to in this country that aren’t ignorant about the law versus suggested guidelines? Arizona are the worst sticklers.
And believe me I take everything as directed (sometimes for breakout pain) and it improves my life I just cannot imagine my life without it. At all.
If there was a needed class action suit against the damage they’re doing I’d be the first one to sign it!
Hi, My name is Ryan and I am 39 years old. I have been taking pain and anxiety medication since I was 17 which is over twenty years now, my whole adult life. Slowly but surely over the last two years they have made it increasingly harder for me to get my medicine, either the insurance company, doctor or pharmacist. I have not been able to get my correct medication for a year, and for the last three months have been buying my medication on the street from stand up citizens. That is not a joke, it has come to that point. If I don’t have my medication it is extremely hard for me to even get out of bed, and paying street prices will have me broke in no time.
I have two young children and the time I’m missing with them will never be returned. The way the doctors and pharmacists act is downright disgusting and seems illegal. I have been lied to by them on multiple occasions. I know there has to be tons of people like me out there that were taking their medication AS PRESCRIBED and now are being punished. Which is another lie they tell people because the number of overdose deaths of people that were taking their prescriptions as directed and not mixing other substances must be close to zero. I take it a little further than most people in the sense I think all drugs should be legalized and controlled. My body, my choice!
If these drugs or medication help me physically and mentally I don’t see why anyone should be able to tell me I can’t have them. I lost a lot of people to overdose but I am an adult and don’t need the government or anyone else to “protec “ me from myself. Drugs have won the war and taking people’s legitimate prescriptions from them will lead to more deaths over the next 5 to 10 years than the last 5 to 10. We need to come together on this too so we can all stop going down the wrong path. If anyone has any advice or can help me it would be greatly appreciated. Thank you all and stay strong.
I’m a 36 year old mother of five children under 15. I was always active, in sports, cheer, my everyday life. I was 7 months pregnant with my second child at age 22. I had no idea what Ankylosing Spondylitis was and so really didn’t until the last eight year. Slowly I’ve become in my mind a vegetable and it continues.
I started not being able to get out of bed without some sort of pain. My hips started giving out and I would fall (pregnant). When I was diagnosed or was very quickly found due to the fact I mentioned my uncle having AS only in his ankles. My AS affects my whole body head to toe. I was put on low doses at the beginning of my diagnosis. After two years I was cold turkey stopped.
I live in a small town with one rheumatologist. I’ve only went to this office as my PCP can’t, won’t and don’t prescribed anything but my antidepressants. I want nothing more than to play alongside my children, be active with my family and for myself. The pain DAILY is unbearable. My original rheumatologist was fired for continuing to prescribe pain medications not to me but to his other patients, and was replaced with a California doctor who is a huge pain management nazi. He gaslight me, assumes, doesn’t listen, and I have no choice but to keep going to him for regular counsel because he’s the only one in my area. I’ve asked to be referred to others and insurance won’t have it. I feel abandoned, mistreated, alone. I feel like I am 95 years old trapped in a 36 year old body.
After 16 years of continuous pleading in this office, infusions that stop working after 1 to 2 years and the back and forth between injections and IV infusions (not for pain, for the slowing of the progression of the disease) I’m tired. Tired of not receiving the treatment I need, the treatment I deserve. My kids have to watch their mother fight a battle they too are susceptible to as it’s genetic. I was told by my current physician to not educate my children about my disease because I’m just putting fear and un-needed attention on their future. EXCUSE ME!?! My children should know exactly what I go through as they could also be affected. They need to know their mother isn’t in bed because she’s depressed, lazy, or using street drugs (heroin and detoxing… nvr used just an example).
Being sedentary brings extreme pain, but so does being active. Much more pain comes from trying to work out. Inflammation and fibromyalgia is unbearable. My skin beats red on the outside while my pain on the inside is invisible and progressing without any relief. I know I’m all over the place here but my life has been consumed at this point. I cannot work, I cannot smile, I cannot live. It’s not my fault I have AS that has also developed stomach issue like Crohn’s and gluten sensitivities. Osteoporosis, osteoarthritis, bone spurs but because I look fine my rheumatology SPECIALIST confirms to the DEA and a paycheck rather than helps his patient, me, myself…
Days are hard and getting harder. All I want is to feel just … OK. I’m not asking for my doctor to do anything but make my life bearable and I can’t even get that. It’s sad and worsens my depression and anxiety. I’m homebound, the pain distances me from normal life, and with five f*cking kids who need their mother.
One excuse that topped the cake was he justified my illness to his mother not having any pain meds until three days before she died and pulled up a YouTube video of Stevie Nicks’ battle with Kolonopin. Then proceeded to tell me I’d never get pain help from him because I have a teenage honor roll student who will take them to school and sell them out of his locker? What? I’ve recorded most all my visit conversations because they are so asinine and never leave his office without crying… I’m receiving the absolute best care because of…? I don’t understand. BTW, in writing this from my pillow in bed as I sit alone in my room wondering what it’s like to live outside of my home anymore. Covid didn’t impact me, I was already distancing myself due to my everyday pain… Someone help!
Alicia
I’m 59 years old, and I began using prescription pain medication steadily following a diagnosis of shingles which affected my V2 Trigeminal Nerve. I was never able to get off the medication because even though the outward appearance of the shingles cleared, the pain remained the same. It was like someone was pressing a hot iron against my face, more specifically in the area between the lower nostril and upper lip on my right side. If you can imagine the worst sun burn you’ve ever had that just doesn’t go away, this is what it feels like every single day. Five and a half years later, here I am still on the same medication because aside from risky medical procedures that could lead to complete numbness or facial paralysis, I have tried everything from creams and essential oils to acupuncture and cold laser light treatments. Nothing makes the pain go away, and the medication only takes some of the edge off so that I can lead a normal life and run my business.
Three years ago, there was a mistake made by my pharmacy when they entered the amount of the pills prescribed and my insurance kicked it out. My pharmacy was saying they did it correctly, and the insurance insisted they needed to re-enter. In the meantime, trying to work all this out, by 6 PM the following day without my medication I began to go into withdrawal. It was something I never experienced before – and never ever want to experience again. The abdominal pain, vomiting, head spins, shakes and sweats was enough to make me want to put a terminal end to the agony. My husband drove me to the emergency room and after two hours in distress I finally got to see the ER doctor and explain what had happened – who then refused to give me a dose of my medication to make me better. At that point, I didn’t know who I was, but I became something like Linda Blair in The Exorcist and lost my mind so bad that I began to scream and throw things in the ER room. Not only did that freak out my husband, but they had to come in and tie me down and place security in my room. After my husband talked privately with the doctor, he decided to give me the medication and admit me to the hospital, where I had constant security outside of my room. With a call finally the next day from my primary care doctor, the pharmacy and insurance worked it out, and things went back to normal. Well, sort of. I suffered some damage, in that for about six months I had a constant tremble and shaking issue. And the psychological effect of what I went through horrifies me to this day.
Today, I find myself in a different set of circumstances. Some nut job patient of my doctor’s had a fit when he could not get his prescription filled, and said something like – “my doctor gives me whatever I want” in his fit of rage at the pharmacy. At that point, the pharmacist contacted the DEA who has now forbidden my doctor from writing schedule II or schedule III pharmaceuticals while they investigate. When my doctor asked the DEA what he is to do about his patients that have refills coming up, the DEA said, “too bad” – leaving all of us completely without medication refills. The kicker here is that I also have an autoimmune liver disease – and can’t take any over-the-counter pain medication at all. So, even if I were able to taper down off my meds, there would be nothing else available for me for any other type of pain I may incur in my days to come.
For the last five and a half years, I have taken the same dose in the morning and the same dose at night. I have never abused my medication but am being treated like a criminal when all I need to do is love my family and friends, run my business successfully, and live a productive life.
Hi. I’m 38 years old and recently had a major stroke. During the countless MRIs and CT scans they have also found a RCA aneurysm. Since my stroke I have had the worst pain in my head that has kept me from doing daily activities even simply sleeping. I have gone to specialists and nobody will take my pain seriously. When I just ask for something to take once a day just so I can sleep and function I’m treated like a druggie. I need help. I don’t know how to live like this. I have jumped through all the hoops and been prescribed so many different medications to no avail. I’m losing hope. I can’t live like this. When I tell the doctors this they say I need to seek therapy or even lose weight! I can’t sleep I’m literally drained. I’m in Portland Oregon and if anybody knows where I can possibly get some help I would be forever grateful.
I am 74 years old and have lived with pain since I was 14 years old. My pain started when I was 14 years old. I injured my back in gym class. My parents took me to the doctor and I had to wear a back brace for over a year. The thing was so uncomfortable I finally took it off. I have struggled through life for many years, in and out of hospitals. I have had pelvic traction and leg traction, many steroid injections, blocks, etc. Nothing would relieve the pain until I found my husband’s doctor.
He was very compassionate and realized nothing worked. He finally put me on the pain medication that helped me a lot. I was on this medication for several years. When my health began to decline to the point I could hardly do the things I used to do, I tried to get help from various sources, and all were either too expensive or we made too much money. When my daughter found out she moved us to Florida. Even though I never liked Florida my husband and I felt that was our only choice. So leaving all our friends, church, and other things dear to us, we had to go. With our savings we bought a mobile home near the family so they would help take care of us. I had hoped to find a doctor right away but that did not happen.
When I did find a (so-called) pain management doctor, he lied to me three times and treated me like a criminal. Upon cutting me off I had withdrawals so bad I though I was dying. I wanted to die. I finally dumped him. A year later I found another pain management doctor and he realized I was in serious pain, but my daughter told him I was an addict because I had taken pain medication for so long. That doctor after hearing her story instead of mine, he cut me off.
I am now being treated like an addict or criminal. I cry every day from the pain. I have severe stenosis in my neck, with three herniated disks in my neck and four in my low back, and a right hip that I should have surgery on. They all agree I am in serious pain but refuse to give me anything, since my daughter said what she did. I am to the point I am praying God take me home, I am tired of being treated like a criminal, when all I want is relief from this pain so I can live a half way decent life. There is a lot more to this story but I don’t think there is room for it.