Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. 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.

2. 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.

3. 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!

4. 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.

5. 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.

6. 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!

7. 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?

8. 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.

9. 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.

10. 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.