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 are not published right away.
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I have physical and mental pain, it has ran off my family and my friends and because of pain I have not been in a relationship for at least 25 years now … the World is a Bad Place to me. There’s not even (1) one person that cares enough to even try to understand what I’m going through! Every day I’m in pain and Sick (EVERYDAY AFTER DAY) EVEN MY DOCTOR. She don’t care or will help me, and do not know why she won’t! Because of all the scammers I am using my internet name: Red Money I am needing money help but no loan, I do not have the money to pay it back.
March 19 2020 I had a car accident that crushed a vertebrae, had Vebro plastic, that was hell! For those that don’t know, they beat a 3-foot needle through your body with a rubber mallet, WHILE YOU’RE AWAKE! and pump cement into the vertebrae. Well the weight of the cement crushed the vertebrae underneath. Went to hospital in SEVERE PAIN ONLY TO BE ACCUSED OF BEING A DRUG SEEKER – NO HELP!
I have nine bulging discs, two crushed vertebrae, pinched sciatica, no cartilage between some vertebrae, I can barely walk some days and GET NO HELP FROM ANYONE. I love life and try to live to the fullest. Damn hard when you can’t move or get relief. TY for listening. Hoping for help!
I was taking a patch every two days, and oxycodone for breakthrough pain at the same dose for 25-plus years. Never failed a drug test, never asked for more meds, did pill and patch counts when they called. I was able to walk sometimes with a cane, go places, see my grandson. My doctor was forced to cut my meds by 90 percent. Two weeks later I was in a wheelchair. Pain levels went up by 5-6 to 9-10. My wife has to wipe me in portable toilet next to my lift chair. I have serious problems and have had over forty surgeries. Permanent nerve root damage. I don’t have a life. Please help me.
I don’t really know where to start… Before any official diagnosis, when I didn’t know what was happening to my body, I was repeatedly humiliated, rejected, flagged a drug seeker and so much more…
4+ years before DC of Lyme
4+ years before detection and removal of Massive Thymus Hyperplasia which grew around my heart causing constriction
1+ years, spinal compression, surgery, cage L5-S1
– Arachnoiditis
– Cervical Stenosis
– Periformis Syndrome
Due to continuous, repeated, horrific, (ER especially), hospital related experiences, my anxiety, major depressive Dx, PTSD, chronic migraines, and seizures have been in a constant state of fight/flight … but I can hardly move so either is out of the question. I am tired. It would be nice to have an advocate. I think it’s too late for me but I’m hopeful you can be one for others before they go through the repeated abuse on behalf of physicians who seem to think they are in a different profession – one of judge and jury. Thank you for your time
I’m 65 years old and guess I will have to live out my life in serious pain. When doing a pre-op to get a total knee replacement they found a heart issue next – day I had open heart surgery to replace a valve. Five years later my second open heart to replace a valve and reconstruct another valve. I have arrested 15 times (I have an implanted defibrillator). Now because of heart, no knee replacement. My knees hurt so bad I can’t walk. I saw a pain doc for years but family made me stop. I have lost all my independence and live with my daughter’s family. The most my doc will prescribe is Tram which doesn’t work.
When I had my first MRI my doctor told me it was a textbook case of the worst kind. I asked him does that mean I will be in terrible pain for the rest of my life or will I not be able to walk. His response was, probably both.
I have been to seven excellent surgeons, all of them telling me never to let anyone talk me into surgery. The chances of it helping me were slim to none and most likely would make me worse. I was able to do physical therapy with the use of pain medication. I was on them for 15 years with no problems. I never asked the doctor for more medication after we were able to get a good dose for me. My doctor would ask me if I needed an increase, but I told him if the amount I was taking didn’t work that day I would wait and see if I was better in the next day or two. In my case taking more didn’t really help. Then all of a sudden pain medications are bad and we all need to suffer.
I started taking Tylenol, that screwed my liver. Then I took Ibuprofen and that hurt my kidneys. I guess they think as long as the doctors cover their behinds that’s all that matters. I’m in my late sixties now and more miserable with pain. I guess they forgot to tell us what was in store for our golden years. Keep positive and keep up the fight.
I have been diagnosed with a herniated disk, arthritis, migraines, and fibromyalgia. I was on some medications for years that didn’t help. I was told that I could not get anything other than what I was taking. I was standing on my feet for nine hours a day. By the time I got off work I could barely move. I stayed out of work or left early because of pain. I lost my job because of this.
I go to one of my doctor visits and she tells me she is referring me to a pain clinic. I tried to call and set up a appointment. I didn’t get a answer so I left a message for them to call me back. No call back. I kept trying and would not receive a answer to my phone calls. I go to another doctor appointment and was told they would no longer give me the pain medicine I was on. I had been on this medication for over ten years. So I had to quit cold turkey. I went through terrible withdrawals. All this I did alone.
I am currently suffering with no pain medicine at all except for over the counter medicine. I am living a terrible life. Simple things like housework makes me hurt. I have trouble sleeping. But what can I do? I cannot get any help. I feel like they think I am lying about my pain. As I am writing this I am swollen and I have sharp stabbing pain shooting through my legs and back.
My wonderful pain doc of 15 years was arrested and I have been unable to find anyone who will treat me in almost three years!!! I am tired of being seen as just another drug addict. I have a complicated medical history, and pain from several disabling conditions. I also have CFS/ME, fibromyalgia, polymyalgia rheumatica, back and neck degenerated discs, etc etc. I am losing hope as I see my future with my conditions worsening and getting no real help!
In horrible pain, have bad scoliosis and all five of my lumbar discs are blown out. Been to many surgeons. All I got was lies and runaround, MRI’s, X-Ray’s, epidurals. Was on Percocet but my nerves were so bad I had to get off and get a nerve med before I went absolutely crazy. They won’t let you take both so I’m at end of rope on couch most of the day, having trouble walking, can’t do much at all. Something has to change with the health system before there is a suicide crisis outweighing the opioid crisis that us in real pain should not be punished for. I guess I will never be helped unless the law changes. Animals are treated better. God bless you all that are dealing with the same suffering. Please someone help us. T.Y.
Very frustrating and shameful what’s going on. I’ve personally witnessed three occasions where patients have been treated inhumanely, myself included.
My husband is a retired military vet and has a host of medical issues. Recently he developed an internal staph infection. Without going into too much detail, he’s currently a hemodialysis patient and it’s believed that’s how the infection entered his bloodstream. He had to be admitted to the hospital, a VA hospital. The infection was in his left arm so they had to open his arm in two spots which left lots of stitches and a gaping wound above his shoulder that had to be cleaned out twice a day. it was extremely painful and the person cleaning the site didn’t seem to care – had him crying out in pain. At first they would only offer Tylenol for the pain, which of course did nothing. He asked the doctor for something stronger and we heard the doctor and nurse arguing outside his room door about the pain medication, which was OxyContin – why?
I have a sister who suffers from Rheumatoid Arthritis. It’s a very stubborn form we both have. For some reason, her doctors stopped prescribing her any pain medication along with inadequate treatment for her RA which caused her to become bed-ridden. She now needs surgery on her knee, her fingers and toes look like pretzels, and she has developed blood clots in her lungs, another painful condition due to inactivity, but still nothing for her pain. I listen to her complaints almost daily but my hands are tied. They just don’t get it, or just don’t care. It’s so much better in the long run for everyone to have people being productive, not laying around in pain, living off the system if not necessary.
I have RA and fibromyalgia. I was diagnosed in 2006. I’ve been on Tramadol for most of that time. Let me tell you, when I first started taking it I was told it was a safer alternative to opioids and was non addictive. My how things have changed. Fortunately for me, my treatment plan, which consisted of treatment for RA and Tramadol for pain has kept my symptoms under control, and I’ve been able to get around a lot better. But recently without warning my dosage of Tramadol was cut tremendously. When the doctor told me she was cutting my dosage I asked if she could taper me down to where she wanted me to be, because I knew what was coming. The answers was, “I can’t do that.” If only they could feel the pain, if only they knew what it was like to suffer from those horrible withdrawal symptoms. As someone else said, as of now I’m still taking the pain med, but I feel it’s only a matter of time before I’m taken completely off – very scary.
[Note: If this is too long then see the last three paragraphs for the main point.]
So my pain story is a little different, but please know I have ENDURED some of the most absolutely horrendous dental pain EVER. I am in recovery from a 15 year run on heroin and I am so IMMENSELY happy and damn proud of myself! I’ve overcame so much and it just helped make me so much stronger. I’ve been prescribed a medication called Suboxone (Indivior) for about 8 years now which helps to alleviate any possible cravings, and I’ve been doing ABSOLUTELY amazing with consistently conquering my goals. They say all good things must come to an end, right? Right!
I started experiencing dental pain about 3 years after being on said medication. I really didn’t think much of it, because we all experience dental pain at some point in our life. It’s normal. Right? Right! Well, nothing and I mean ABSOLUTELY NOTHING could’ve prepared me for ALL of this unwarranted dental decay and dental pain I’ve been going through. It is HORRENDOUS! It’s a loooooong and constant pain feeling EXACTLY as if someone was repeatedly beating me in the mouth with a baseball bat! Yes, a damn baseball bat! The pain was so EXCRUCIATING! I’ve now been dealing with this for 5 years CONSTANTLY with seeing numerous dentists and countless appointments.
My teeth started cracking, crumbling, breaking in half leaving VERY VERY sharp pointy teeth to constantly scrape the bottom of my tongue causing open sores. So when both my teeth were hurting and the sores were fresh, I would dread using Anbesol because it would BURN the open sores caused by the cracked teeth. I’m still dealing with this. It NEVER ends! So some teeth were pulled and a partial was made. All was okay until yet another tooth fell out not too long after receiving the partial. I tried to have the missing (artificial) tooth added to the partial, but was told teeth cannot be added to a plastic made partial and that it must be a metal made partial. I was also told I cannot have another partial made until 5 years has passed since the making of the first partial. So yes, it’s just been a complete and utter disastrous mess of pain, agony and mental suffering.
I couldn’t ever figure out why my teeth were decaying at (all of a sudden) such an alarming rate within such a short amount of time. All throughout my addiction, I still managed to take care of MY teeth. It was strange, I was no longer using heroin, so why were my teeth decaying? I came across this ABSOLUTELY INCREDIBLE human on TikTok one day and she was an angel sent to save my soul! REALLY!! Guess who? Yep, Claudia Merandi. Wow! Now I knew why my teeth were decaying! I finally had an answer!
She was explaining how people who are prescribed Suboxone are dealing with dental decay and how the makers of Suboxone, Indivior, failed to warn the patients, myself included, of the ALREADY KNOWN dental decay. Indivior had its employees sign an NDA (Non-Disclosure Agreement) agreeing to ‘never let the birdie outta the bag’ and advise any of the patients of the dental decay that Suboxone causes. I know EXACTLY why they so carelessly chose this route, because they were more concerned with profits over patients.
The warning wasn’t imprinted on the little information packet that usually accompanies medication either. What is their excuse other than ‘wanting that money’ and couldn’t care less about the excruciating dental pain we as patients had/have to endure. And not to mention ALL of the dental pain aids I had to purchase, all of the gas used going back and forth to the dentists, and actually going back tomorrow. This is CRAZY and absolutely inhumane of a pharmaceutical company to put their patients that they ‘supposedly’ care about through all of this COMPLETELY unwarranted, undisclosed, screeching agony on my mental health and EVERYTHING.
I will now see you in court for ‘Failure To Warn’. Profits over patients, isn’t that right, Indivior? The kitty cats outta the bag now!!
Hello everyone, my name is David and I have been disabled for the last 22 years. They have had me on so many different pain pills I believe I shouldn’t be here anymore. For over 10 years I have been on Suboxone and Gabapentin, and I’ll leave that story for later, but I have lost a few of my teeth. I brush 3 times a day and couldn’t figure out why my tooth was cracking and hurting so much. Dental bills were costly and it’s hard to chew. I’m glad I found Claudia Merandi on TicToc and it all adds up. Thank you.
I broke my back in 2005 had titanium put in on my L5 and double fusions. I have been given Gabapentin since then. I forget so much and think and my vision is very bad. I have been in pain since then. Doc only wants to give me steroid shots which makes it worse. My pain management stopped my pain meds because I take Diazepam for my severe pain and lost my left leg feeling since all that.
Now, they gave me again the same Gapapentin. My pain is a level 9 out of 10, have no life, been depressed and I’m not me. Please help me to find a lawyer I can trust. I am a guinea pig for all the doctors. They don’t care! He wanted me to implant that thing and I said no because it makes it ten times worse. Can’t go to ER no where at all. I need help. I’ve been going to docs and they want to do the same again. I can’t take this anymore. My family doc can’t do nothing so I urge you to help me. I appreciate it so much. I’m confined in my house and only 49 years old. I have more health problems where I cry every day. It’s HELL. Thank you
I broke my ankle in 2010 and had an allergic reaction to the hardware. When the doctor finally listened 4-1/2 months later, I had Osteomyelitis. I had to go on and off IV antibiotics when my PICC line became infected, giving me Endocarditis. It took out my Tricuspid valve and the bottom two discs in my back. It also sped up the aging of my bones. I can’t remember the medical term, but a very well-respected neurosurgeon explained it best. She said, “Brandy, you are 41 in an 81-year-old’s body.
In 2014, I had my Tricuspid valve replaced with a pig’s valve. I was having to drive to Boston every couple of weeks to see multiple specialists. I had three very young sons that needed their mom. I was unable to work and had very little money. I was frustrated, exhausted, and on the brink of giving up, when I met my current Primary Care Doctor.
I had to sign a drug contract. I passed every urine screen and very frequent random pill count. I attended all of my appointments. I even went to counseling for quite some time. I also have Crohn’s disease, which causes mal-absorption, so I have to take double doses of all my medications! I came to him while taking two opiates. He got me completely off of one and as low as I could go on the other. I have been on this regimen for seven years and it works! I cannot stand up straight or walk on my own. My foot is so damaged and turned that Orthotics had to develop a crow walker boot for me to walk in on my crutches, to prevent it from breaking off the bone. I have scoliosis so my spine is curved and I cannot lie down flat. I have severe Osteoporosis so I cannot get injections. I am on the maximum dose of anti-inflammatories.
I had been with one pharmacy when their corporate office dropped all manufacturers except one. I had a severe reaction to the yellow dye in it. My doctor went to another local pharmacy and explained my medical history and what happened at the other pharmacy. They welcomed me over. I had been there for eight months when a new lead pharmacist was hired. He refused to fill my pain medication that I have been on for seven years, and he filed complaints against me and all my doctors! I did nothing wrong – in fact, I was doing everything that I was supposed to do! I believe he red-flagged me because two other pharmacies refused to fill my prescription! I was able to go back to the original pharmacy, but I had to take a brand that my body didn’t like. My doctor prescribed medications to manage the side effects of the reaction.
The board of medicine began an investigation and subpoenaed my medical records. I cannot attend these discussions, and there isn’t a patient advocate to represent me either. I don’t understand how the board can discuss me or my healthcare without even talking to me. They do not know what I have been through or continue to go through! They suspended my doctor’s license, saying he violated his agreement by going over the restricting limits on my prescription.
However, when the Opiate Law came out, I contacted Senator Gratwick. He created an exception bill saying that chronic pain patients qualified under palliative care (exemption B) and could go over the restricting limit. Senator Gratwick asked me to come to Augusta and tell my story to the state legislators. After my testimony, the legislators said there wasn’t any need for Senator Gratwick’s exception bill because chronic pain patients already qualify under palliative care, and can go over the restrictive limit.
Shouldn’t the board of medicine and the state legislators be on the same page? This is when it became clear to me that Senator Gratwick’s bill should have been passed! I don’t think they will let my doctor come back, and I have tried to find a doctor everywhere to take over my pain management. Doctors will not take new pain management patients because they are afraid of losing their licenses – look what they are doing to mine!
Pharmacists are refusing to fill prescriptions for people who truly need opiates to have a quality of life. The board of medicine is suspending doctors’ licenses for going over the restricting limit! The medication and dosage should be between a patient and their doctor! You cannot treat everyone the same because we are all different! I have reached out to Senators, State Legislators, Congressmen, and State Representatives in every county asking them to help me sponsor a bill to protect chronic pain patients in Maine. If this can happen to me, it can happen to anyone!
They treat us the same as people who abuse opiates and that is wrong! We are forced to taper way down or completely off the only medication that gives us a quality of life! We are forced to go on the same medication as opiate addicts: Methadone or Suboxone! There are cannabis stores popping up on every corner, and anyone can walk in and get all the marijuana they need to stay high. Maine Health partnered with two organizations to give out smoke-safe kits and crack pipes, but someone like me cannot get a legal prescription for the only medication that gives them a quality of life. It just doesn’t seem fair!
We shouldn’t have to beg for a doctor to see us, or prescribe a medication that gives us and allows us to live our lives! Without my pain medication, I cannot even get out of my recliner, let alone go to my medical appointments, do my daily errands, or be a mom to my three sons!
I had a double jaw replacement surgery back in 2008. I woke up from the surgery in so much pain, all I could say was I hurt, I hurt, I hurt!!! My wife, who I thank God for her and the fact that she became a nurse over twenty years ago, demanded the hospital staff to do something. Otherwise, I don’t know what I would had done. Because of her, the staff gave me enough meds to go back to sleep (not back under anesthesia). However, the second I woke up again, I would start to scream in pain! Finally the next day, the pain team from the hospital came and recognized that I was not in a good spot. They gave me just enough pain meds, that I could bear the pain for enough time to get to my next dose. I can’t remember what my oral surgeon did during that time, but I’m pretty sure I never saw him until I was back in his office during my post-op check up. I told him how much pain I was in, and he didn’t really address it. Instead, I had a full-mouth X-ray in his office and he gave me another week’s worth of pain meds. I returned to him two weeks afterwards only because he wanted to see me, because I had asked for more pain meds the following week. During that visit, he told me that if I wanted more drugs, I wouldn’t be getting them from him.
I’m not the kind of person who likes confrontation and I didn’t know what to do except go to my family doctor the next week. He, being a genuine caregiver, started to prescribe me pain medication, but he wanted to address the pain at the same time to find out what was going on. So he sent me to a neurologist who diagnosed me with Trigeminal Neuralgia. Go ahead and look it up, they call this condition “the suicide disease”. And I can honestly say, I had never before thought about doing anything like that, but I have at some points in my life after this unfortunate event.
I began going down this nerve pain road and since then, I have gone to five or six specialists, had my trigenimal nerve medicated, burned, and I even had a small brain surgery to try to get that nerve separated from a blood vessel.
Two years after my surgery, I became so depressed, discouraged, frustrated, and everything else under the sun. I finally went to another oral surgeon just to see if he could do anything else to me to just give me an ounce of relief. Thanking God again, he actually knew the original oral surgeon personally. He showed me from the X-ray he took, that my left jaw joint was displaced and out of its socket. Not only that, but since I gave him my original post-op X-ray, he pointed out from that as well that the same joint was out of place the week after I had my surgery. For two years, I had my jaw joint out of place.
He vouched for him and told me that as difficult as it might be, I should go back to him and show him the original X-ray. He told me this because he assumed that he could not have been aware of this, and he wouldn’t have left his granddaughter like he left me.
I cried going home and for the next few days. I didn’t want to go back. I was so mad. But I finally did, as painful as it was. I don’t know which I felt more, the physical pain or the emotional pain. I went back and he admitted that he didn’t see that my joint was out. Lucky me though, he fixed it for free, I just had to pay another hospital bill (sarcasm).
Since that second surgery, I can now open my mouth big enough to eat a sandwich. But I’m still in so much pain from all the nerve damage. I had hoped that since everything was now in place that the nerves would heal. I know it takes a long time for nerves to heal but since it has been twelve years now, I am giving up on it. And you would think that I could get used to the pain, but I’m not. Some days are more difficult than others. The days I have had to deal with insurance, doctors, or pharmacies are the days I really hate!
I now go to my family doctor AND a pain doctor because my family doctor is too scared to give me any pain meds, and I don’t blame him. But the financial drain of having to deal with both doctors and the things my pain doctor wants me to try so he can get me off the pain meds have sucked my wallet dry. But I keep trying everything because if it works better than the pain meds, I would happily do it! If there was ANYTHING else other than pain meds, I would take it in a heartbeat! But for twelve years, I haven’t found anything that works like the pain meds do.
My pain meds give me enough relief to go to work, do more with my family, eat better, sleep better, do everything better! Why would any doctor not want me to eat and sleep better? Why would any government elected official not want me to be healthier and happier? When did America stop giving us the choice to pursue LIFE, LIBERTY and HAPPINESS?
I’m so thankful for your movement.
It’s horrific that our government has placed our pain care under the Feds!
I’ve fought the racket since around 2014.
My back collapsed from spinal degeneration.
I had been in severe pain before that but never was my need respected.
By the grace of God and determination I learned to walk again!
The breakage of my spine left me with Neuropathy and Fibromyalgia.
The Neuropathy was a constant 7-8 pain level plus the back pain.
Shoved from doctor to doctor but either the doctor didn’t want me because of my medication or was unwilling to help me handle the pain.
I was loaded up with muscle relaxers, which harmed my heart and esophagus!
I had such horrible acid from an esophagus flap that no longer functioned because of all the muscle relaxers!
My teeth started crumbling at the gum line, my sinuses are very messed up.
All due to the MUSCLE RELAXERS to try and shut me up and pacify me.
Just last week I made a giant step to get a medical marijuana card.
It’s been a godsend; the pain is down, averaging in the 3 to 4 [range] instead of 7 to 8 now.
I’m still fighting the side effects and praying the flap and my heart return to health.
Hi. My name is Judy. I have been living with pain since 1998 when I got pregnant with my son at the age of 41. I was a farm kid and I had three brothers and I was strong and stubborn. And I wanted to prove that I could do anything my brothers did. And I did. My first job was working in a Sears store in the front room moving large appliances in boxes around … by myself. I was 18 years old. I was raised to work hard and not be afraid of physical work. I never gave a thought to what that did to my back.
Then I got pregnant and the normal sciatica when you’re pregnant set in, and it never went away. In 2002 I got a gastric bypass hoping I could lose enough weight to take the pressure off my back and relieve the pain. Didn’t work, lost a lot of weight, but my back was a mess. I had sciatica down both legs and into my feet. So when I saw the neurologist I ended up with fusion of L5 through S1 way low on my back. Although that operation got rid of the sciatica it created numbness in the back of one leg because the nerves were irreparably damaged, and my low back still hurt. A few years later we moved to California for eight years for my husband’s job. We lived in a suburb outside of Sacramento. And there I discovered a pain management doctor who actually knew what he was doing. It also happened at the time when they started cracking down on opiates.
The CDC has a very long and complicated set of rules for doctors who prescribe opiates. My doctor followed those rules. I eventually ended up volunteering in his office as the CDC Requirement Expert because it’s a full-time job. Within three years I had fusion of L3 L4 and bilateral sacroiliac joint fusions. All of these were successful and my life was a little more comfortable and I was able to get off the opiates and turn to buprenorphine for the pain. And then I got into a three-car accident as an innocent party, and my back pain escalated. So I started supplementing the buprenorphine with Tylenol. I overdosed on Tylenol and fried my liver. So now I can’t take over-the-counter medications because of my gastric bypass and my liver, so I need a specialized pain medication.
Which brings me to comprehensive pain management, run by Physicians Assistants, who didn’t like me because I was well-versed on the CDC rules and understood everything that needed to be done to satisfy them. They put me on a low dosage of Hydromorephone after consulting with my liver doctor, and it was enough to give me a life. I could walk again, I could clean my house, I could get in and out of the bathtub. They started by giving me Suboxone which doesn’t work for my pain, and I don’t need the naloxone because I’m not addicted.
After six months on the Hydromorphone I started to feel so much better that I thought maybe I didn’t need it anymore, and I switched to what I had left of my Suboxone, and found out real fast that I was delusional. I needed the Hydromorphone. But they fired me because even though they were the ones that prescribed the Suboxone, and they told me I broke the rules by taking it without asking them first. So now I have no life. I’m only 65, and I want to be able to clean my own house, and cook dinner for my family, and play with my animals, and do yardwork, and not feel like I have to sit down every 10 minutes because my back feels like it’s going to break in half.
There has to be a doctor out there brave enough to prescribe for us. I read online that CVS, Walgreens, and Walmart all got fined for filling opioid prescriptions so the CDC has them all running scared. This nonsense has to stop. I’ve got a good 20 years left in me, if I could just stand up and walk.
Hi my name is Darin. I’ve had a total of 14 surgeries including 5 on my spine, 10-inch rods and screws from L-4 to S-1, backed up by carbon fiber cages placed through the front of my body after everything inside was moved out of the way (pulled out and to the side for access). Two prolapsed discs in my neck placed 3 years apart. Two surgeries to repair both feet after a boating accident, not my fault may I add. Severe arthritis in my feet which has resulted in both of my big toe joints being replaced with cobalt chrome joints. Three additional surgeries on my left hand trying to clear out melanoma which they had to go deep. Now my hand has phantom pains going down into my fingers. Surgery to remove melanoma on my chest. Surgery to repair the tendon in my left calf after a bicycle accident. Along with other surgeries including nasal to correct an airway breathing problem. At 55 years old I have 2 more bad discs in my spine at t2 and at the top of my fusion. Going to spine doctor tomorrow to see what to do. I build powerlines for a living for the last 30 years, so when the weather is at its worst I’m outside in it.
I have been prescribed different opiates for years, never once asked for meds early, lost a script, nothing. The doctor prescribing my meds retired so I was offered subox— by my new doctor. Not helpful for me so after a year I slowly with doctor knowing slowed down to very little dosage and stopped taking it. Now the pain is an 8 out of 10, but my doc has no intention of prescribing me an opioid that I know will help. This doc has access to all of my records, everything, but tells me an opioid can make my situation worse. I also have severe degenerative disease and major spinal stenosis. I really don’t know how much longer I can work or do much of anything with the pain I am in at any time I am awake – which is a lot because I can’t sleep with this pain. It is so sad that CDC or whatever agency has grouped all of us suffering as a problem. What can I do?
Fibromyalgia, osteoarthritis, tendonitis, can’t function, need doctor to listen, can’t text anymore!!!
My pain is incredibly high and increasing since my other medications have been tapered. My pain doctor dropped me in 2017 after putting me on 3 Percocet a day. Bam, took them away. My other doctor and I tried different medications and came up with a remedy because it was helping my pain. Now that is being severely cut and changed because I lost my original doctor due to her leaving the practice. I’m in desperate need of a doctor to listen and understand what I am going through.
It is unreal, the under prescribing. I’m in so damn much pain all the time. Don’t know what to do about it anymore, except maybe double up on the dosage? Help, please!
I have lived with severe nerve pain for almost 31 years. Taken off pain meds has reduced my ability to care for myself or contribute. I can’t believe the government is missing the numbers affect the economic health of every country that beloved statements with no research, contradicting much research. We individuals need help, but so does an economy hurting because we were sent home to die. Left alive are too strong to die soon
I share similar circumstances as these two have written. I have been on meds for over twenty years going to the same doctor but he has retired and moved across the country to be with his children. The pain center I was referred to spent very little time with me and suggested to go to a methadone clinic and subject myself to daily driving. At 69 years of age that is not only an unbelievable stress not to mention the type of conditions you would have to tolerate to deal with. Those facilities are not for people of my age and background.
My name is Leslie Avila and for 8 years now, I have suffered from Trigeminalgia (the suicide disease) and more recently, I’ve been diagnosed with Stevens-Johnsons Syndrome, Toxic Epidermal Necrolysis, and Lupus.
I have been prescribed hydrocodone for years but during my hospitalization for SJS and TENS, I was taken off of and denied stronger pain medication despite having large patches of my skin covered in burn-like sores.
I am treated like a drug addict every time I go to the ER seeking help and my doctor can’t prescribe me anything stronger due to the laws that are in place. I am stuck at a stand still and have a friend who is in a nearly identical boat. We are desperate, humiliated, and dying for relief so that we can be more adequate mothers to our children.
I suffer daily from extreme pain and discomfort at only 31 years old, I don’t know how to keep going like this. I am in DESPERATE need of help.
I’ve been dealing with the undisclosed dental decay for the past 4 years now due to Indivior, the makers of Suboxone, failing to advise patients of this vicious and painful side effect. I’ve never ever had serious issues with my teeth until after three years of being on said medication. Indivior had all of their employees sign an NDA (Non-Disclosure Agreement) agreeing to never advise patients of this harsh side effect. Why is that, Indivior? This is wrong, and I will continue fighting for myself and all who’re having to deal with this crap! How would the president of Indivior feel if this happened to them or their family? They don’t care about the patients, it’s pretty obvious! They clearly chose #ProfitsOverPatients! I’ve lost pretty much all of my teeth due to their grimy action and I’m demanding compensation!
My doctor is retiring soon. Judging from all the comments I’ve read here on this site it looks as if I will soon be up a creek without a paddle! My journey has been quite an interesting one over the years and my story will soon be coming to an end.
I have never been to a pain management office as I was fortunate enough to have a primary care physician that believed in the oath all physicians used to take, and if they continue to say they took the oath they do not practice or live it in any way. As I stated I have been fortunate to have had this doctor for many years and I’ve known him most of my life, and even went to the same small high school many years ago. He was and is around three years older than me, graduating three years ahead of me with one of my older siblings who was/is the same age. I enjoyed robust health most of my life until reaching the age of 48 when I needed a total hip replacement. Doc made the appropriate referral to the orthopedic surgeon for the impending procedure.
I was experiencing a level of pain that kept me from living my day to day life so he prescribed norco with appropriate and timely follow up, until we found the amount and dosage that kept me functioning pain-free, mostly, up until the surgery, which was successful. I stayed on the norco until the acute pain resolved. I came off of the drug because the pain was diminished to the point where Advil worked and only needed Advil occasionally. I played football in my youth and went on to doing construction work and other physically demanding occupations most of my life. Several years went by and then my back went out, causing horrific sciatic pain. Once again it was time for norco to get me pain-free enough to resume working plus physical therapy, chiropractic and several epidural treatments that provided varying levels of relief albeit short lived. My last injection gave me temporary paralysis from the waist down that scared the living shit out of me and my primary care doc, not to mention the doc that did that last injection who was shitting bricks and was visibly relieved when feeling came back after many hours. I was able to leave that place walking after about six hours passed.
After about a year of sciatic pain I finally had a laminectomy performed successfully and once again discontinued the opioid. Life went on. About four years after my first total hip my other hip started causing problems and back to the norco, but didn’t wait as long before scheduling the next total hip procedure. I was very pleased with the first hip replacement and the back surgery. I was looking forward to having the second hip done, never thinking something could go wrong, but unfortunately it did. The second hip was a superior model developed for more active patients and had shown good results for many people who had opted to receive it. Unbeknown to me the surgeon was doing and using this prosthetic only for the second time. He had performed hundreds if not thousands of procedures and hardware like I received with the first one, but he had only practiced once on a cadaver before attempting mine.
I agreed to the new hardware and procedure but was somewhat concerned when I noticed the incision site was larger than the first one, and he told me that he had to deal with “minor“ complications. Long story longer, the recovery was not as trouble-free as the first. I was suffering acute pain that never went away and continued to get worse. After about three months I was taking 16 Norco daily. My doc explained to me that he would have to switch me because that was far too much Tylenol to take daily and could have severely damaged my liver. Oxycontin was too expensive as I had no prescription drug benefit any longer, since I wasn’t working and had lost coverage by then. He tried me on Methadone four times a day with Norco for breakthrough pain. I was on 160 MME for several years and functioned without feeling “high” and was employed and able to resume daily life and all that entailed, and nobody knew about my medications except myself and my doctor.
Enter 2016, and the CDC suggested guidelines for opioid prescribing: Fuck me. Doc gave me the heads up about six months before my state decided to adopt the guidelines as law and I successfully tapered down to 30 MME with the addition of cannabis smoked and cannabis oil I made myself and took sublingually on a daily basis. I was fortunate enough to learn how to make my own oil as I could not afford to purchase it from dispensaries on my fixed income. My doc was and is amazed that I reduced down to such a low MME level and told me he could have referred me to pain management and surely they could have continued prescribing opiods to me. I knew that would not be the case, as I had already heard the horror stories of how Pain Management docs were on a mission to reduce or discontinue prescriptions for evil opioids, and are still doing it to this very day, even with the new updated guidelines from CDC!
A fact he soon discovered after hearing stories from patients he referred to Pain Management offices because his practice set the limit at 30 MME daily as their limit and cut off point. I doubt this will be read by anybody and I just want to wrap up my story where I started off. My doc is going to retire soon and rather than be subjected to inhumane treatment and a loss of dignity I’m going to “opt out”. My loved ones will be informed beforehand so we can say our goodbyes. I want to hopefully lessen their grief, especially my grandchildren that have greatly contributed to my life for the last 11 years, years I consider to be bonus years. Even while my pain just keeps getting worse, shrinking my brain, robbing me of quality of life. I would rather have them remember me as the smiling, laughing, loving grampa before pain robs me of that ability, and the angry bitter spiteful Grandpa shows up! Good luck to all my fellow sufferers – maybe science and research will come up with an alternative that works for you, and I know for sure it’s not Gaba-fucking-pentin, mindfulness, or any other cockamamie bullshit the powers that be keep touting. I’ve never wished ill on anybody, and I do wish for all of you, and you know who you are, that before you pass you get to experience unrelenting 24 hours per day excruciating pain! fucking assholes
For as long as I can remember I have always been in pain, even as a child, since the first time my brother tried to kill me. He pushed me into the water, and I was clinically dead for 45 minutes. I learned to walk and talk again. I have had more things happen to me than a whole city of people. And now I have more health problems than anyone, I have about 50 or more. Every day I am sick and in a lot of pain. At one time I had big dreams, that have turned into nightmares. I have no family or friends to help me financially or any other way. To me the world is a really BAD place. There is not even one person that cares enough to even try to understand what I am going through. I AM ALL ALONE WITH NO HELP, FINANCIALLY OR ANY OTHER WAY. I TOLD MYSELF NOT TO GIVE UP BUT I HAVE. WELL I HAVE TO GO, BYE TO ALL
I have to drive two and a half hours or take a train just to see my pain doctor. They made me choose between my pain meds and anxiety meds. What I’m getting is not working all. It does it make it so I can’t think, and I need to be able to work and raise kids. I have not really complained much about the long trip though … my doctor had to call a friend of hers and ask her to take all the people with fibromyalgia, because we got denied by all other pain doctors in Nevada. The only reason why she did take me is because she is treating me for other pain issues, not my fibro. I have to sign contracts with them every year of what I can and can’t take. As long as I’m on my pain meds they even want to know if anyone in my family has ever been addicted to anything. If so they can give meds to you. I can’t use anything natural that helps with pain because if they find it in my system I lose my meds. They keep trying to push me into doing the ablations again. I woke up from the last one I had in a panic attack because I had ten needles in my back and they were burning my nerve endings while I was awake instead of putting me back under. Most of my neck is blown out and I have stenosis in my neck. I have been on the same meds for years, and I need something I know that works.
The pain I’m in is too much for me to handle, there isn’t even one person that cares enough to even try to understand what I’m going through. I am all alone in a world with too many people. People say and they think they know about PAIN, When they don’t have a clue. They think I’m faking it. So they say things that hurt or they just don’t care, they think they know more about my pain than I do. I get no help from anyone. They get mad, and yell at me, they say things that hurt, they pretend I’m not in pain, and they think that I can do things like someone that’s not in pain, they expect it. The pain has now ran off all my family and friends, I quit trying to be in a relationship, because they all would be mean and hit me, ABUSE me. So I have not been in a relationship for over 25 years now. Yes I’m lonely and sad and I get so mad, but I can’t make someone care about me it has not worked yet.
There’s not even one person that cares enough to even try to understand what I’m going through, not even my doctors. They don’t care so I get NO HELP, I HAVE TO JUST SUFFER WITH IT, ALL BY MYSELF!!! The PAIN IS REALLY BAD AND IS GETTING WORSE. I have lost all enjoyment in all things I used to love doing. I don’t leave my room and I cry and cry and I get really mad over nothing and I’m so tired of the pain and the way people treat me, LIFE IS NOT WORTH LIVING AND FEEL AND KNOW I’M DYING BECAUSE THE PAIN IS TOO MUCH FOR ME TO HANDLE. I DESPERATELY NEED HELP BUT NO ONE WILL HELP ME, SO SOON I WILL BE GONE, BYE WORLD WITH NO HELP OR LOVE OR A LITTLE UNDERSTANDING
they’re going to BAN KRATOM IN PA!!
Pennycuick (R-24) has introduced the Kratom Consumer Protection Act to prohibit the sale of and provide a regulatory frame work to protect consumers https://www.pasenategop.com/news/pennycuick-introduces-kratom-consumer-protection-act/
I want to see a person against narcotics go into the ER with a kidney stone and be told they can only have Tylenol as I was. That was beyond insulting. They could see the stones yes plural, but they refused. I would have become violent if I was not in such acute pain. But the PA said the IV Tylenol works “much better“. I asked to see an MD, they didn’t have one available, but this is policy. I left. I wonder why we have a fentanyl crisis, I was tempted but afraid of that too.
In 2016 I woke up unable to move my left arm. I ended up having surgery but the damage was done. I have Bilateral occipital neuralgia. My Neuropathy started when I hurt my back when I was 42. I am now 57 with polyneuropathy in hands feet legs left arm. I use a cane, and I am physically disabled with pain from head to toe. No one would treat my pain. I had a fusion in my neck with one week of low dose pain medicine. I was in bed for one year. Then I started to understand why the doctors did not want to treat my pain. I ended up going to a methadone clinic. It gave me the ability to get out of bed.
My spine doctor this week knows I am not an addict and said there was a study, and they want to put me on low dose suboxone. I said No as nerve pain is hard to treat, and Methadone works well for me. I am so stuck. What happens when I can’t walk and go there. I WILL HAVE TO END MY LIFE as I can’t live in all that pain.
I also had bladder cancer twice. I have a bad right shoulder. So I HAVE PAIN EVERYWHERE. I had to find my own treatment as my doctor could not and would not prescribe over [an insufficient dose] of methadone [a 25% higher dose] is 90 MME. I have a daughter who is 29. I want to hang around for a few more years.
I have been diagnosed with pudendal neuralgia associated with a nerve entrapment. I also have chronic colon conditions that prevent me from working and deemed me as disabled. I had surgery in Detroit Michigan with a specialist there, but I’m from South Carolina. The surgeon in Detroit wrote me a prescription for oxycodone while I was there for 3 weeks, but when I returned to South Carolina none of the physicians was willing to write me a new prescription for the pain.
So, the surgeon in Detroit wrote a letter to all of my physicians communicating that I still require medication and interventional management. Due to the recent changes in federal and state laws governing Telehealth services for patients across state lines, that they are no longer able to prescribe medications unless licensed in the patient’s state of residence. In the interim, they stated to please consider prescribing pain medication such as Oxycodone 5 mg, intravaginal or rectal Diazepam 10 mg BID PRN pain or B&O suppository via compounding pharmacy as these medications have enabled me to function with lower levels of pain in the past. The local doctors here in South Carolina still denied me the medications and told me to go to the ER, urgent care, or my family primary care which also denied me the medication that was medically recommended. I’m in so much pain I have unethical and suicidal thoughts.
Prior to the surgery the doctors here in South Carolina prescribed Belbuca which didn’t work and tried to convince me to get a spinal stimulator, but my colon rectal physician advised against that. I’m bed bound, house bound, and living with debilitating pain on a daily basis. I’m not subhuman and feel like I’m suffering in vain. These new laws have placed legitimate disabled chronic pain patients in the same pool as those who are drug abusers, making it impossible to get the quality of care that we need. It is inhumane, unconstitutional, and unsettling!
Yes I have been living with Chronic Pain for a lot of years, with no help from anyone, and OTC PAIN MEDICINE I HAVE BEEN TAKING EVERY DAY FOR YEARS HAS STOPPED HELPING ME. I have Arthritis in all parts of my body, neck, shoulders, chest, upper and lower back, hips, arms, wrist, hands, legs, and feet. Headache every day, ulcers, Diverticulosis, Barrett’s Esophagus, Acid Reflux, stomach pains, jaw pain. So I asked my doctor if she would please help me, and she said (NO) WITHOUT SAYING WHY. I AM IN A LOT OF PAIN ( EVERY DAY ). It is 8 or 9 on the pain scale and I’m not coping, I am really suffering and struggling to get through each and every day, life is not worth living. I am a 65 year old woman and because of so much pain, I cannot have a relationship, I have no family or friends to help me and no one understands what I’m going through. I have very low income and it’s hard to find a doctor who takes my insurance. With no help I’m not going to live much longer.
I fractured my T12 vertebrae approximately ten years ago. I have been on opioid pain medication since then. Recently these medications have begun to be taken away from me by Kaiser Permanente in Northern California Under false pretenses. Both my doctor, who agrees that it should not be taken away, and myself were originally told the CDC mandated it. I contacted the CDC. First they don’t “mandate” anything, they have only guidelines. It was not their intent to have pain medication taken away from chronic pain sufferers, but to make sure there is no misuse and chronic pain sufferers continue to have access to pain medications. I have the email to prove it.
When I confronted a pharmacist they back-pedaled and told me it was actually the DEA. Upon recent research their role is to make sure the law is followed and that doctors and hospitals do not over-prescribe opioids. I wonder what excuse they are going to come up with now? I’ve had so-called pain management specialists tell me it’s all in my head, even though multiple MRIs show a sliver of bone resting on my spinal cord that can not be removed for fear of paralyzation. I’m lucky in that the only side effect I have is constipation, which can be helped with stool softeners. I don’t even feel narcotic effects. I just get pain relief so I can function.
Since my life has changed drastically I intend to spend all my time and effort to shed more light on this travesty and bring back relief to chronic pain sufferers. I live in Sacramento CA, our state capitol. I hope to find more people such as yourselves to bring as much light to this problem as possible. I understand there is an opioid crisis but we didn’t cause it.
My 87 year old mother in law had her opioid pain medication taken away from her “because she might get addicted “. Due to her age and her chronic conditions she had trouble doing things and going places before, but managed with the help of pain medication. Now she is in constant pain and can barely get out of bed. I constantly hear her tell me and other family members that she wants to die. She is tired of being in pain and has no life beyond her bedroom. This goes beyond reckless, it’s criminal!
I’m ready to try to find a lawyer. If anyone knows of one please let me know. At Kaiser the pharmacists are allowed to override the doctor’s prescription, give you fewer pain medications and cut them off altogether, despite your doctor’s input. Surely that is practicing medicine without a license? They are causing pain and suffering, surely that’s worth something?
Had double hip surgery. Have unbearable pain 24/7. Taking Tylenol which messes up my stomach. My doctor from Kaiser refuses to give me pain meds, says he can only give opioids to cancer patients. I am at wits end with pain. Can’t take it much longer. Thank you from the Sacramento area.
As a patient and now a retired nurse, I have fought against these ridiculous regulations for years with you all, three of them here. I was able to access narcotics for my RA, Fibro, Hashimoto’s, etc. Then, as I feared, the hysteria hit here. I received a letter stating that my doctor and all doctors from this rural hospital would no longer be prescribing opioids for any chronic conditions after 12/31/2023. My NP referred me to a place in Buffalo NY, who outright refused to keep me on my medications and laughed at me. I could show her studies about how it is safer to leave someone on at this age than to discontinue it. Nope. I was referred to another doctor – this one very young, who had only been practicing for eight years. I figured that I had no chance. Not only did she keep me on my medications, but she increased the dosage of one! A sliver of hope. Let’s see how long this lasts. She is in a practice, but not with the first hospital.
My 19 year old son recently fell off a ladder and landed on his face straight into concrete. He received dozens of small brain bleeds along with three facial fractures. He was life-flown and stayed in trauma ICU. That hospital was great staying on top of his pain however when we finally got back home to see his regular doctor for pain meds she wanted to give him magnesium and Tylenol/ibuprofen. Tried telling me studies have shown opioids can cause more pain and Tylenol is actually stronger. After following Miranda on tiktok I knew exactly what was going on.
I had a tough talk with his doctor and had to re-educate her on pain and pain medicine. I asked her what study did she read that said Tylenol was the gold standard. Then proceeded to tell her we are in her office for pain medicine because he has three fractures in his skull. This doctor was the doctor that decided to life-fly him so she knew he was in bad shape. I had to explain to her that I understand she is possibly scared to prescribe or wasn’t taught correctly about pain, but without pain control it takes the healing process a lot longer, and she took an oath to do no harm.
She eventually did prescribe him only some hyrdocodone which was better then nothing. We went home and tried it and surprise it didn’t work. He was getting oxycodone in the hospital which work great. But she wasn’t willing to budge. Instead she said use ice packs and Tylenol. I had to go everywhere with my son for a while in fear of his getting something off the streets and it being fentanyl. Without being educated from this page we never would’ve even got hydrocodone. It’s just sad. This happened in Kansas.
Something DEFINITELY NEEDS to change for the Chronic Pain Patient, such as myself! Right out of the gate, I am going to tell you, I pray to God for death, often.
I am 59 years old and was FORCED on Disability at age 50. I say forced because my PCP (Primary Care Physician) that I have been with for 23 years, threatened to fire me as his patient if I did not get on PERMANENT DISABILITY due to a new onset rare blood bacteria combined with another HORRIFIC blood bacteria combined with an EXTREME bowel disease and EXTREME SCOLIOSIS, Reactive Arthritis throughout my entire body caused by these multiple blood bacterias which, literally TOOK my ENTIRE spine from my neck to my tailbone and other joints as well.
I’ve been to doctor after doctor … specialist after specialist … research hospital after research hospital, NONE of which could help me or WOULD help me, better said! The physical pain I was and STILL AM LIVING with is BEYOND WORDS through my tears.
I FINALLY found a spine specialist that actually listened to my TRUTH, WITHOUT kicking me to the curb, forcing me to search for yet another doctor, which would have made doctor number 13. In his office, he put up on a big screen, three separate MRIs: my Cervical … my Thoracic … my Lumbar / Sacral / Hips. He somehow, had the ability to join all thre MRIs into ONE large picture. I will call this doctor, Dr. John Papa*******. He stared at this screen for a long time, he then took a DEEP BREATH and turned and faced me.
His EXACT WORDS WERE, “Janet, you know what I do … I do spines … NOTHING BUT SPINES … You know how long I’ve been doing this … I have seen THOUSANDS of spines, but I HAVE NEVER EVER EVER seen a spine as BAD as yours, Janet … ever!” He continued to say, “A man of 100 years old has a 1000-fold healthier spine than mine”, age 50, at this time. He said, “As HORRIFIC as my spine is, he is AWED I am NOT sitting in a permanent wheelchair”. He went on to say, he WILL NOT recommend Physical Therapy, for he was confident that would place me in a wheelchair for sure. He said, Janet, eight or even ten spine surgeries WOULD NEVER EVER fix me. My spine, he said, was UNFIXABLE PERMANENTLY! He then, he NEVER RECOMMENDS OPIOID PAIN MEDICINE to his patients, but in my situation, he would make a one hundred percent exception and add a lot of PRAYER in with this if I was to have ANY FORM of NORMAL LIFE to the day of my death, he said. He told my physical pain absolutely must be HORRIFIC, which is true. So he sent a letter to my PCP, who changed the useless Tylenol to Percocet (Oxycodone) which DEFINITELY helped.
Well, then this Opioid Crisis started TERRIFYING all prescribing doctors. My PCP sent aLL his Chronic Pain Patients letters, stating he will NO LONGER be treating us and we had to find a PAIN doctor. Pain doctor after pain doctor, WITHOUT HELP, they either prescribed NSAIDs, which with my GI disease I CANNOT TAKE, or they had a list of outpatient procedures that was MANDATED BEFORE or during prescribing an opioid. So being FORCED into these ABSOLUTELY USELESS spine procedures, which I TRULY believe VIOLATED MY CONSTITUTIONAL RIGHTS but lined these pain doctors pockets, the VERY LAST procedure, I ABSOLUTELY REFUSED.
The one that the doctor BURNS YOUR SPINAL NERVE ENDINGS, in my case, from neck to tailbone. The pain doctor FIRED ME for NOT having that painful procedure done. So currently, I am with a new PCP now for approximately five years; I always do my regular pee checkups and requirements.
Two years ago my PCP got a new Medical Assistant and she “runs the show”. She LOATHES anyone on pain medication and she lets it be verbally known. She believes we are all NOTHING BUT “SEEKERS” even though my medical chart speaks for itself and I’m PERMANENTLY on DISABILITY, which is NOT EASY to get in Michigan! So since she came into the picture, she makes me go days and days PAST my 30 day script until she decides to call it in. So I SUFFER and PRAY for DEATH! My BCBS insurance company has even called the doctor’s office APPROVING my medication to be filled on time. But NOPE, Doesn’t happen.
I should mention, I am ALSO the CAREGIVER of my 98 year old mother, who is also a patient of my PCP. If I CANNOT get out of bed because of my “OFF the CHARTS” pain level, then I CANNOT care for my precious 98 year old mother! I NEED HELP and ADVICE PLEASE. PLEASE PLEASE. I MUST KNOW MY RIGHTS as a Chronic Pain Patient until the END OF TIME! SOMEBODY PLEASE
I am a 71 year old female. I am healthy without any chronic issues. I fell November 22 from stairs and ruptured my Right Quad muscles in my Right Leg. I had surgery December 21. On December 22 I had pain so bad that I really begged God and Southwest to get me on the next flight! My daughter called the ambulance because the surgeon’s office would not answer the phone. The discharge nurse at Summit Hospital called to say “How are you? Merry Christmas.” She did not follow through with my inability to contact my surgeon. When the ambulance arrived the EMT stated to me before the ambulance reached the entrance to the subdivision, “Mam, you will be home after two shots of Morphine before I can go to lunch!” The ER MDs and RNs never examined my leg, dressing, checked pulses, checked for temperature of the foot. However, they did give me two doses of IV Morphine and were in the process of discharging me even to the fact that two security guards and two RNs were to observe the ER tech with the transport wheelchair (no leg support) to escort me into the lobby. I was transported to the lobby on the stretcher and begged to be admitted because the pain was 25 on a scale of 1 to 10. My daughter found the Patient Advocate and intervened with the ER doctor who said, “I have no reason to admit her to the hospital.”
Finally, I was admitted to the hospital and was taken to the hallway in the ER. A hospitalist checked my foot and found it cold and swollen so he ordered DVT studies.
I was taken by stretcher by my daughter and the tech to the Imaging Department. Both cut the rolls of cotton from my ankle to my thigh, unwrapped the ace bandages, removed the immobilizer and my pain was greatly relieved. I was admitted to the hospital for one night.
Without my daughter (and my friend, Diane who was an RN as well) I would have been put on a transport wheelchair and pushed into the lobby/parking lot. I am now in the process of reporting brutality and lack of basic nursing and medical care in post-op surgical checks. The security guards were willing to “manhandle” a 71 year old woman from a stretcher.”
After spending my life working in hospitals this is horrible. No person should ever be treated like this.
I’m a medical doctor who’s been living with chronic pain for at least six years. Initially it was my hip and my back, and in 2022 my knee really started to hurt. I went to an orthopedic surgeon who told me I had terrible arthritis in my left knee and moderate in my right. I had eight total injections of various medications and my blood (PRP) which did not help. My surgeon told me my knee was terrible, and to come back in ten years for a knee replacement.
I was also in a horrific car accident in March 2023, that could have killed me. My entire left leg was one big hematoma and the worst of it was just below my left knee. I went to a surgeon who did not want to drain it. I went back to my orthopedic surgeon who told me “it’s just scar tissue now” and I am left with a permanent lump below my left knee that makes my knee pain much worse.
I recently went to my primary doctor and she referred me to a pain management doctor. I told him I was a doctor as well when he first entered the room. I do take prescription medications for anxiety and ADHD, which are controlled substances. I have not been prescribed ANYTHING for pain, let alone a controlled substance. All this man did was look at my prescription drug report. Which shows I’ve been going to only one psychiatrist for two years, get my medications only once every thirty days and certainly hadn’t been doctor shopping. He told me I could “overdose” if he prescribed me pain medication.
Give me a break. I could overdose on Tylenol, Xanax or alcohol! I never ONCE asked him for an opiate. I told him that Tramadol and Gabapentin did not work well for my back and hip pain. He said “because of my medication history”, he could only prescribe me Celebrex, which is useless. I even doubled the dose and still have to take Ibuprofen and Acetaminophen. He did not treat me with an ounce of respect. He did not look at me once during our five-minute appointment.
I printed out a copy of my knee MRI and he refused to look at it, tossing it back to me and saying, “you can have this back.” He didn’t want to know the severity of my disease which actually warrants pain medication! He treated me like someone who abuses Oxycontin or Fentanyl. To make matters worse, he suggested that I stop my Xanax and wean off of it. He also said no one will give me pain medication because I take Adderall. The Celebrex isn’t working at all, it’s garbage. I sent him a message telling him how bad my pain is and so far have not gotten a call back.
I’m definitely considering filing a complaint against him with my state medical board. I would love to sue him for malpractice. In my opinion, NOT TREATING PAIN IS MALPRACTICE. He should be worried. This will not end well for him. If anyone knows of any attorneys in the US who represent pain patients, please let me know.
I have been experiencing chronic pain for about six months. I am in severe pain. Every. Single. Day. If I have a pain level day of 5 or 6, I feel like I’ve hit the jackpot. Those days are few and far between. Most days the pain is unbearable. My PCP gave me three days worth of hydrocodone (Tylenol 3) when I told him the pain was excruciating and I had not slept in days. He was adamant that’s the best he could do for me and don’t ever ask for more. I went to a pain management doctor, who right off the bat said he does not prescribe pain medications. A pain management doctor?!? I feel so hopeless and have often contemplated ending it all. Why are people with horrible chronic pain being treated like drug-seeking nutjobs? I’ve been to a number of doctors and don’t ever get pain medication, just recommendations to take ibuprofen. Zero help. I really do feel like I am being punished. More and more people are choosing suicide because they can’t handle the pain anymore.
I have been on 280 mg of morphine since 2005 … was taken off in 2021 due to the so-called opioid epidemic. It is literally killing me. I have Addison’s disease, intramuscular vascular hemangiomas, tumors, and broken vertebra. With pain and stress it messes with my entire adrenal system.
In 2022 my son was found gone of a fentanyl and animal tranquilizer. So you see I am in the middle. I have one son left graduating college, and feel if I end my own life I can’t leave him with that. But my physical health is getting harder and harder to keep under control.
I’m deemed permanently disabled by a judge. I started working because if I lay around it’s worse. I have been stamped as a drug seeker even though I have no record of begging or doctor shopping. I have nowhere to turn. The pain and suffering is unbelievable. I have really given up at this point. This is the America our ancestors fought for so we can suffer. If anyone can please help!!!
My name is Journee, I’ve been a chronic pain patient since adolescence. I dealt with severe arthritic pain and extreme heavy painful periods. When I got older, I would go in and out of emergency rooms because the pain of my pelvis was so severe. They would just leave with me as drug seeking and hysterical.
In April of 2019 my former OBGYN said I had one of the worst cases of endometriosis she had in her practice. She also took blood work and said that I do have rheumatoid arthritis. When I saw the rheumatologist, they said I didn’t have it and I was just fat and I need to lose weight. I have a history of neurological issues ever since I got covid-19.
I’ve been dealing with extreme migraines and there’s an emergency room, free standing who normally take care of you. The last several times I’ve gone there when my migraine was out of control, they would take care of me on the medication regimen that works for me.
When I went to the hospital two days ago because the migraine was going on for the fourth day, the doctor refused to treat me. They wanted to give me benadryl, Haldol, Reglan, and tylenol. The thing is I told him I already took Tylenol and I said it’s not working. Then they think that I am just seeking for drugs but when my head feels like it’s going to explode, it’s a scary feeling.
This covid-19 migraine was the worst because I felt like someone was sitting on my face, squeezing my face, squeezing my head, stabbing pain throughout my head and on the top of my head, and severe left neck pain which concern me because I couldn’t turn my neck and I thought I had meningitis. I have seen multiple pain doctors and they just want to force that spinal stimulator on me or steroid injections. I actually was referred by another chronic pain patient of her pain clinic which they did help but they really screwed me over.
I was having a problem filling my Percocet because of the shortage at CVS and I was worried that I was going to go through withdrawal just because you know I take the pain medication every day for my debility pain but I take it correctly obviously. So I called up the pain management doctor and I was really frustrated because nobody was listening to me, and they ended up just telling me we’re closing your case. I actually talked to other previous patients that were new and I guess that pain management place has been getting rid of the newer patients because they do prescribe opioids and they don’t want the DEA coming after their license.
The only thing that’s been helping my chronic pain to an extent is my kratom – I’ve been taking Kratom since 2018. I still don’t have the greatest quality of life when it comes to pain. I miss being on my pain medication because I got things done around the house, didn’t have to miss work all the time, and enjoy going out with friends without being in pain. So yeah, that is my story.
This opiate crisis is getting out of control … they think that everyone is dying left and right from opioid overdoses when they barely prescribe them.
Hello fellow sufferers, I have been a pain patient for 25 years and have been through all of the terrible and unimaginable treatment by medical professionals and government bureaucrats alike as if they were all knowing for what is best for us even if it harms us. Recently I came across a group of pain sufferers who are trying to help with changing our current situation. It’s called The Pain Lawsuit, and they need more claimants to make a class action against the harms we have been experiencing from government action, inaction, and influence. Many of us have talked about taking our plight to the courts and here’s a chance for to do it together. The group is on Facebook and joined by many people who have aligned with Don’t Punish Pain Rally and The Doctor Patient Forum. Please, let’s try to get through this together before it’s too late.
Hello, I was diagnosed with fibromyalgia, Rheumatoid Arthritis, bursitis, and degenerative disc disease. I’ve had two knee surgeries before the age of 35 and countless years of walking with a cane. I was diagnosed with bursitis in high school when my leg swelled up and I couldn’t walk on it. I had, still have, days where getting out of bed is not an option. I literally hurt from the ends of my hair to my toes.
I used to love to walk and exercise! Now when I walk for any amount of time, my left foot swells twice its size, my back will have sharp hot pain shooting down into my legs and it’s all I can do to get up to use the bathroom. These episodes can last days and sometimes over a week.
I wake up constantly in the middle of the night with tremendous muscle aches! I don’t believe I’ve slept a straight six hrs since before 2020.
Around age 35 my doc began prescribing opioids to help me. Along with physical therapy, water therapy, TENS units etc!
I did have two docs tell me they thought I had spondylitis in lieu of all my ailments. However, Covid hit and that was that.
I moved to Minnesota in 2021. Here I thought because of the Mayo Clinic I would get some help. NOPE!
I was treated for 21 years with no trouble! I’ve never overdosed, been arrested or had any negative/illegal occurrences and never any financial issues. I did whatever they wanted me to do! If they said I had to have physical therapy; I did it! If they said I had to get those steroid shots (they don’t work) I got them! Whatever they advised, I did what I was told!
They put me on cymbalta which did NOTHING! They put me on Neurontin which made me think I was crazy and very very loopy! In fact, I had a pain doc get mad at me for not being able to tolerate Neurontin. Like I had any control over that! I had a severe reaction to Lyrica.
In 2020, my doc said he was transferring me back to pain management but full time this time. I had seen the pain management doc a few times before this. Once the switch happened, I was cut off! I begged and cried for answers as to why! No one seemed to care. In 2021 when I moved to Minnesota, I got on suboxone for some relief. It helps about 40 percent of the time. Sadly, the doc I have for this script has tried to advocate for me but to no avail.
I am so lost, hurt and completely beside myself that for over 20 years there was never an issue! That they could just throw me out with the bath water! I didn’t ask for this! I didn’t ask to be in chronic pain!
I often wonder how long I can hang on living this way.
Well, my pain story began many years ago when someone ran over me at Washington Square Mall. I was in the hospital for over a week. They told my husband I might never walk or talk again. I re-learned to do both … while fighting the pain that came with the accident. I went through several surgeries, including a few to repair my spine. Some time during this battle, I was diagnosed with Multiple Sclerosis. I have had a pain specialist for over twenty years now, but before that I was basically begging for pain relief. At one point I was so desperate that I stole a prescription pad from one of the doctors that didn’t understand just how much pain I was in. I got caught and took a deal.
Since then I have accepted whatever the doctors decided was best. They have admitted that they know my pain is more than they are LEGALLY ALLOWED to prescribe for. I’ve accepted that and kept suffering from the pain that the pills won’t touch. Last week I began getting a rash that turned into blisters. I finally could not handle the pain anymore and went to the Emergency Room. That was frustrating, angering, and gave me a real feeling of hopelessness. All I wanted was to get something to break my “pain storm”, pain that is so bad you cannot sleep, with sleeplessness making the pain worse. They diagnosed me with a debilitating case of Shingles.
The doctor in the ER said because I was on pain management, there was nothing he could do. He DID give scripts for the Shingles, but referred me back to my pain doctor while sending me just enough pain pills for the weekend. I DIDN’T WANT PAIN PILLS! I just needed immediate relief.
I called my pain specialist as soon as they opened on Monday and whoever answered the phone informed me that by accepting enough pain pills to get me through the weekend, I had violated my pain contract and they couldn’t give me anything else for the pain. I hadn’t asked them for meds, I just was trying to inform them so I would be honoring the contract. ARE YOU KIDDING ME?
I’m 72 years old. I’ve been fighting this battle with both chronic and acute pain for over 35 years. I have begun to wonder why I keep fighting? Why stay on this earth where the government knows better about treating my pain than my pain specialist of over ten years? I’m so tired of fighting this battle that I’ll never win. I’m tired, I’m in pain and I’m frustrated. Thank God that I have supportive family that makes me realize I need to keep fighting.
I just wish that the government that is supposed to protect everyone WOULD!
Sorry for going on here, but I had to tell my story to somewhere that actually listens. Thank you for that.
My story starts back in December 1997. I was hurt while resizing parts in a Forge Shop in the company I worked for. I went to a company doctor and he stated it was just a pulled muscle.
My company shut down for two weeks for the Christmas holidays. Returning in January to work I was in terrible pain and could hardly walk. Back to the company doctor. He ordered x-rays of my lumbar region. He still wasn’t satisfied that my problem was serious. His APRN saw me, the x-rays, and the pain I was in, and called the doctor back in to my room. She told him in her own words, “You can see he’s not faking this. He needs to be in the hospital now.” Naturally, it was a workman’s comp case so you can imagine what the process is with that.
Then five back operations, adding a titanium ladder to support L2-3 and 4, over a period of several years. And then, they had to go back in later through my side and add numerous spacers leaving a nine-inch scar. They say my spine was like jelly. I had to take shots every day for two years. Now I have taken Prolia shots every six months for bone density strength. All this time, from 1997 to 2025, and I’m still living with severe chronic pain. What has been prescribed has helped some, not a lot. I only take them as prescribed no matter how bad the pain.
This is my short version. I could almost write a book. It goes on and on.