Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. 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

2. 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.

3. 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.

4. 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.

5. 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!!!

6. 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.

7. 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.

8. 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.

9. 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.