Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. Thank God ❣️ Decades of chronic pain I have lived and the older I get the less care I receve. The President of the United States was on television saying that the purpose was not to take away the drugs from senior citizens or other people who actually needed the medicine! Therefore I agreed with him! Now it turns out that it has done me great harm!

2. My name is Terri H Perry. My brother is Ernest Daniel Howard. Dan is currently suffering from advanced small cell lung cancer. When he was diagnosed 3 months ago it was already stage 4 and had spread to his spine, brain, and other parts of his body. He made the choice to seek palliative care until such time as the good Lord sought fit. Dan has suffered from pain his whole life. At the age of 3 he had a rare kidney cancer called Wilms Tumor. He had his kidney removed and underwent several years of treatment. Back in the mid 60’s treatments were in their infancy and there were many side affects to his body as he grew older. Dan also suffered from heart disease. During Dan’s 40’s he suffered a stroke, had a double bypass, and had a heart attack 6 weeks after his open heart surgery. He also has one bad valve in his heart. The damage done to his heart was so severe he only had 1/3 use of it. This caused him to become disabled at the prime of his life which was devastating. To add to his health issues all these years his bones became weak due to the cancer treatments he was given and this caused his spine to degenerate and curve (scoliosis). He sought various treatments for years. His primary care physician would subscribe pain medications including opioids to relieve the pain. Many years passed during this process and the opioid strength was increased as the pain increased. Long story short…..his primary care physician retired. This caused HUGE issues when it came to him getting the medications he was use to having and needed. New doctors would not prescribe the strong opioids he had been taking and failed to understand to events that lead up to his current situation. He had to go cold turkey off the meds which was horrifying and painful in itself. Although I agree other options for pain management should be sought it was not handled in the manner in which it should have been. There was no reason for him to have suffered like a drug addict who is being detoxed from drugs. He was finally referred to a “pain specialist”, which in my opinion he should have been to years ago. The pain specialist helped with injections, ablations, and medications. For the past two years Dan was doing well at managing his pain. But here we are today….. During an MRI in July 2019 of his back it was discovered he had advanced cancer. The point I want to make is what we have learned during this process. Because of the recent attention opioid abuse has received it is hurting those individuals who need these medications for daily life. I myself take an opioid for pain relief. I had bi-lateral fusion of my SI-Joints 5 years ago. It did not give me 100% pain relief and I still see a pain specialist and use pain medication. I’ve tried other alternatives available however at the end of the day the pain medication is sometimes the only relief. Every year it seems harder and harder to get these medications due to regulations. I agree there is abuse and some regulations are needed however, we need voices for those who DO NOT abuse the drugs and need them. There should be more studies on addictive behaviors and genetics than using laws and scar tactics. For Dan I am speaking out because as I write this, he is lying in a hospice inpatient facility that will not increase his pain medication because I’m told DEA is “all over” them for giving him what’s he’s taking now. Isn’t it the mission of hospice to make individuals comfortable and relieve their pain?? Instead you have the hospice medical staff worried about what DEA will do or think? This is insanity. Who is to say how much medication is enough or too much. This is not the job of the DEA…… Dan and others who suffer from pain and chronic pain can benefit from opiod medications. The suffering needs to end!

3. I am 75 year old female. I have Osteo Arthritis and have constant pain in my neck, hands, knees , feet. It is a struggle to get my opioid meds. I am treated like an addict when I request a refill: pee test, grueling questions,

4. Amen! Hi my name is Joy n ive been in pain n pain management for over 20 yrs. Im writing because i cant find an address for the CBC. I think thats the Department making the Opiate guudelines. Im not sure who to write. Im from NYC n had one Dr. For 18 years. For the past 3-4 years its been hell finding a Dr. Who will give me the medicine that ive been on for 17 years. I explain that ive tried many many combinations of meds. N finally found one that subsides the nonfunctional pains…the ones that render me useless to all. I have injuries from conducting the NYS road exams as my career as well as a blood disorder thats extremely painful n a connective tissue disorder. All documented still its a battle. I have a Dr. Now but has brought my milligrams down quickly to the max. Allowed. Its nit an Opioid crisis its when people use fentanyl the wrong way..shoiting sniffing or mixing meds. With others ir alcohol. Speaking of…when people started drinking n driving they didnt ban alcohol or tabacco causing lung diease etc. No they raised the taxes n made more $ off them. I could go on lord knows but my neck n wrist are killing me just writing this i had to stop 4 times. Please can someone tell me where to write n if there are any groups in NY that you know of? Thank you

5. Last year I left my Pain Management Drs. of 15 years because they were blackmailing me to have stem cell injections and ketamine infusions or no pain meds. I went to a Rheumatologist who agreed to take me on as long as I stayed at 30mg. and exercised. I have done everything he asked. 4 months ago. He said he was being forced to taper me off my meds by the CDC and took away 2 of my meds and I have been searching for a new Dr. since. One Dr told me this was a lie and has agreed to help me find a new Dr to prescribe my meds as He does not. I am so angry that this Dr let me waste an entire year with him. I thought I finally found a Dr that would keep me on my meds without having to worry every visit. I am hiring an attorney because I believe this is malpractice.

6. My name is Sandra Carlson. I have spinal stenosis, degenerative arthritis. diabetes. After many xrays. mris, and mylogram, I have no cartledge in lowerer spine and surgery is not advised. Since 2000 have had both knees and hips replaced, carpal tunnel surgery, rotary cuff. In the 70s I had 2 back surgeries. I have seen surgeon for my back and due to severe damage I cannot have surgery. Since the pain restrictions changed I get very little pain relief. I feel like this is very personal when everyone is now treated the same, no matter what they need to help pain. This ruling treats everyone the same and does not let their doctor prescribe meds to help patients with pain. (sort of like one shoe fits all).

7. I am 65 but the last two really bad years of tortuous, unending, unbearable pain has aged me so rapidly, that I look a horror. I’ve have had a couple car accidents in my life and several fallson my back. I’m thinking perhaps the brain injuries made me more sensitive to pain, since it sounds like other people are living with worse problems and surviving. The pain was so intense last year that it caused a heart “episode”, nearly a heart attack, I just imploded, although I didn’t tell my doctor. There were years when suicide was the first thing that came to mind upon awakening, despite a wonderful meditation/yoga class I faithfully attended, until I couldn’t. 5-6 years ago I was prescribed what I consider a wonder drug, (starts with a V ). I was able to manage my excruciating pain and feel like a normal person for a decent part of the day… with limitations of course. With this med I could time my relief , so was able to actually work part time and be in the world. I was active. Then the “opioid crisis” came along and there went my meds, with no explanation or apology from the doctor. It was back to bed for me, and I’ve missed every single family, worldly, educational, pleasurable event since. I am a complete hermit now, in a prison of pain and loneliness. I can’t even get a dog now. It’s really sad, really frustrating. This sort of confinement is the opposite of my nature. Without work, I fell into poverty, despair, and a chaotic mess. I’ve never received a word of understanding or sympathy. Others will assume it’s a matter of willpower and psychology, which is hurtful as well. This wasted life could have been repaired so simply with a proper dose of meds. Someone else mentioned that they were “blackmailed” into costly procedures as an alternative. Same here. I never really got to experience middle age. I went from young at heart to decrepit. I don’t even have really major health issues, yet, but sitting in bed all day is unhealthy and the difference between having the right dose of medicine or not, is like night and day. Living versus dying. Now I just feel ancient, worthless and trapped. It seems so unfair. Hope this story makes some sense, I’m out of practice.

8. The federal government or rather the DEA steps in between patients and doctors and prevent patients from receiving the required amounts of oxycodone that helps me through the daily struggles with pain. It is unbelievable that the DEA steps in and interferes with the patient and Dr. confidentiality. Basically you the DEA are doing more harm than good. If the DEA thinks that by going after patients that have a Real medical condition that requires opiates you’re sadly mistaken. You should go after the the dope dealers including your own that are in the public service like your police force that kill thousands. Don’t punish us – we need this medication to have a normal day without pain. But even now the pain is so severe because by you interfering with doctors and patients you are causing thousands to commit suicide and believe me I’ve thought about it. So please do us right, go after someone else not us.

9. Hello,
   This was back in 2015. I had tripped over my dog (he was black, it was 4am) and tried to brace myself. I fell onto an out-streched hand. I broke 1 of the small bones in the hand/wrist area, as well as an avulsion fracture in my wrist. I went to the local urgent care. My 16 year old daughter came with. We were putting into a room immediately. I was honest about the medication I take. I have Hypermobile Ehlers-Danlos Syndrome, so I am hyper-flexible. I have had many dislocations and subluxations that have cause joint damage all over my body. This is why I take medication.

   The doctor came into the room. He asked what happened. I answered him. He showed a flashlight into my mouth (I have friable gums and am missing teeth as I was in the process of getting dentures.) With NO X-Ray done and not even a glance under the ice pack, he says to me IN FRONT OF MY DAUGHTER, NO LESS “Why don’t you come back when you decide to lay off the Meth” !! I am not exaggerating. I am being 100% honest. He then turned and walked out the door, and 2 minutes later the nurse returned with my discharge paperwork that says ‘strained wrist’ ‘no splint needed.’

   I was so shocked, that I just had to leave. In the car my daughter is tearing up, asking “mama do you take meth?” At which point I explained what the doctor assumed, and she pulled up pictures on her phone and said they don’t even look like my teeth!

   I went to a different facility 65miles away that was an Orthopedic Urgent Care and it was the only one near us back then. After they gave me a proper exam and X-rays, the doctor came into the room and says “I don’t know HOW they missed this.” She then had me sit for an MRI which is how we knew of the avulsion fx. The Doctor here was amazing and very sweet, especially when I told her what had happened to me earlier. No questions. Just a script for pain meds, cast and sling, and a hug out the door. (Also the suggestion that I report that physician from the local Urgent Care!)

   The doctor at 1st UC made a knee-jerk assumption about me, rather than inquiring with my PC doc, or checking the PMPD, Which would have shown I never refill early. And I don’t see multiple doctors. 1 doc, 1 clinic same scripts. No dosage adjustments in 10 years!! That man broke my daughter’s heart, and had me shattered. That was the first time someone ever BLATANTLY called me a drug addict! But it wasn’t the last!!

10. I don’t think it should matter what type of pain problems you have. We have opiates and as a citizen you should have a right to them. There are risks and side effects to many legal substances. Personal risks are choices to be made by individuals not the government. This is not a free country and Doctors are not Gods. No country and no doctor can evaluate your pain. Even if your pain treatment has created a “dependence” on opiates it is not a problem unless it is taken away. Then you have TWO problems. Increased pain and withdrawal. Three problems when you realize another civil right has been taken. Abusers might well have created a national problem but law abiding responsible citizens did not. They suffer anyway. They give up and kill themselves. When the news stories report an attack on a doctor they do not consider that a sufferer might feel that he is being murdered and decides that it is the only justice possible. The report will suggest that the drugs made the person do it. No, it was the lack of drugs that made them do it. The real evil is that most Doctors are convinced they are helping. So what if they die? We offered alternatives and they refused. I should not be pressured into treatments that I don’t want if the opiates work for me. Like so many, I was started on opiates many years ago. My brain and body are permanently changed. People are dead and there are more to come. They did not have to die in order to change prescribing statistics! A living human being dependent on opiates is better than a drug free dead one. The News Media should be presenting the victims/citizens who will not be heard. They want us to donate to save the animals but not the human ones.