Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. Since my PM doctor was shut down, I can no longer function. I was able to work 10 more years and lead a productive life thanks to the pain meds that I was able to take. I have had 5 surgeries on my back plus hip replacement. Now my hip replacement is broken and I need to have it replaced. The pain is at a level 10 and I have nothing to help me. If I have the surgery for my hip, they won’t give me anything for the pain. So, with the back pain plus the hip, I am unable to do anything and I live alone with 3 dogs and 2 cats that I am responsible for which is now extremely difficult.
   The problem is since the government can’t control the street drugs, they have gone after the people that needed the meds and got it legally, they came after us because it is something they can control. Wish they had our pain, and if they did, I can guarantee that they would get the pain meds that they need. They don’t bother looking at our files to see what horrible shape we are in and why we to need pain meds. It is just so pathetic. Is there any hope for us?

2. I suffer from spinal stenosis, Spondylosis, advanced disc degeneration, Fibromyalgia and ME/CFS. I did well on a 75 mg pain patch for 8 years with injections in my back. But about a year ago, my pain specialist had to lower everyone who didn’t have cancer down to a 25 mg patch due to new laws in Florida. She is willing to give me pain pills but that is what actually gets many addicted. Some pain pills only lasts four hours for me before I start getting sweaty, cramping, etc from withdrawal. But you can only take it every 6 hours. I realized that it was a recipe for disaster for me and now only take those when I can’t stand it so my body doesn’t get used to them. This is just my experience, many other patients can use pain pills without this issue so please do not take this and use it against those who are on pain pills. My doctor and I both know that the news media is responsible for demonizing the patch because they show the boxes of patches when they are talking about people overdosing on the drug in a powder form. BUT, the drug people are dying from is powder imported from China and Mexico not the patches!!! It is punishing patients in pain for something that has absolutely no relationship to the actual problem!! There are never any Pain Specialist doctors or patients involved in making these radical decisions according to my doctor. She is considering leaving the specialty because she feels like her hands are tied. Suicide rates for pain patients have sky rocketed in the last five years but no one talks about that. They only consider the street overdoses. It is time for lawmakers and the FDA to make logical decisions not flying by the seat of their pants!

3. I’m Susie Tune, 66-yr-old female & chronic care patient. Went to dr last year when 65. Didn’t have ins before March. When I first went I didn’t know what was going on. The dr & staff were kind of weird. I knew I had lumbar spinal stenosis from paying out of pocket for CT. Urgent Care asked if I could get one. I also have degenerative disc disease, loads of arthritis in back & osteophytes. Now pain is unbearable at times. I have fibromyalgia, too. Nothing dr gives me seems to help. Before I knew about opioids, what is going on, I asked for stronger pain medicine. Well, he won’t give me anything stronger. Does he have his hands tied? Or does he not understand difference between dependence vs addiction. I’ve taken tons of pain med in past when I tore a muscle in my left leg. I wasn’t addicted. I might not be dr but I understand my own body. That’s why I asked for pain medicine. I take Tramadol, Tylenol #3 every 8 hours. Definitely not enough to help with my pain. Whoever is acting like Hitlers up in DC, they need to be fired, pronto.

4. I have had five back surgeries three spine surgeries two fusions and brain surgery and I cannot get doctors to prescribe me pain medicine any longer because of the ongoing politics it’s so sad my life has changed for the worse please help

5. This Dr. At pain clinic was and is completely heartless, what he has done to my boyfriend and countless other people in serious and chronic pain, is unethical, this is a quote from him “I DON’T EVEN GIVE CANCER PATIENTS PAIN MEDS” people in these situations go to dr.s for help not to be scrutinized and degraded because other people don’t do what’s right, what is going on with insurance companies, u pay for your service not other people’s, I pray this changes, where is the morality,

6. I am like many others, a victim of the opioid epidemie. 12 surgeries to includes 5 laminectomies, R.A., disabiliting chronic pain for decades causing depression,anxiety attacks P.T.S.D. My Dr. with great reluctance precribe50mg of
   fentanyl patches.The pharmacist takes me aside and counsels me about addiction…I am truly embarrassed and in tears. I run back home alone ,an other anxiety attack. The pain gets worse and I pray to God for the disabiliting pain to go away. I am 78 years of age ,no dementia but P.T.S.D. My
   family cannot deal any longer with my condition ,I find myself in complete isolation.
   Why should I be a victim of a
   pharmaceutical company like
   Perdue??Please help me find again : La Joie de vivre” .I am robbed of the minimum plaisirs of life not having too many years left ..Please spear me of more embarrassents. I am only asking for compassion,understanding and kindness. No more tears please….

7. I am 26 years old and diagnosed with stage 4 endometriosis, fibromyalgia, & osteoarthritis. Since I was 13 years old I have struggled with severe stomach/pelvic issues and was turned down by PCPs, ER doctors, & specialists saying I was too young and making my symptoms up in my head (aka drug seeking). From the ages 13 to 25 years old, I would be in-and-out of emergency rooms because the pain was so severe, I actually would pass out in my bathroom lying in my own vomit. Doctors would constantly mock me and write on my records saying “drug seeking behavior” when I just needed relief and answers why I was in so much pain! I went to several different OBGYNs and they declined to give me laparoscopic surgery because they’re afraid of me wanting more drugs off of them & used my mental illness as a way to abuse medications. My PCP thru 2017-2018 did prescribe me pain medication, but one day he forced tapered me without safely withdrawing me from it. I went through the worse withdraw because I was cut cold turkey! After withdrawing from pain medication, I was in more pain than ever and ended up in bed most days because I could not even function. Fast forward to 2019 of April… I finally had my laparoscopy procedure and my OBGYN who is the sweetest lad, she said I have one of the worst cases of Endometriosis she’s ever seen in her practice. The endo spread to my colon, bladder, kidneys, and bowels! All these years of begging for the pain to stop, it was justified! I was never a lying, and all these specialists and emergency room doctors made me feel like I lowlife junkie loser. My OBGYN is actually super mad at doctors who dismissed me in the past and made me feel like a drug addict when my pain was very real and validated! I am supposed to have a second surgery to remove all of the endometrial tissue or possible hysterectomy, but now I am worried because I have read stories of people being denied post OP pain treatment after surgery. It is not fair that chronic pain patients or any type of pain patients have to suffer because some people had to abuse their medication. Everyone deserves to get help and treated with dignity and respect. Nobody should be left in agony because of the stigma that “narcotics kill” because that is false! I hope America/the government wakes up and realizes they are doing more harm than good. I am currently on pain medication, but every month I fear one of these days my OBGYN will take me off because she’s afraid about losing her license, and I don’t blame her. The government needs to get out of the doctors office and let the doctors do their jobs. They don’t understand how severe pain is when you’re up all night, crying in fetal position, and debating if you should go the emergency room when it gets worse. Pain is very real and I would never want anyone to go through what I have to go through, or other chronic pain patients who are dealing with other severe pain diseases (CRPS, RA, & etc.) Chronic pain patients deserve to have their pain medications because it gives them quality of life. I would rather see chronic pain patients take opioids to get through the day and have a better functional life, instead of being in bed for the rest of their life wanting/thinking of killing themselves because the pain is agonizing. It’s not fair! I hope non chronic pain people realize that opioid therapy helps tremendously for chronic pain patients.

8. I am a 66 year old woman who grew up downwind of a lumber treatment plant that poured out chemicals into the air in the form of ashes that fell on our property and into the swamp waters that flooded our back yard every heavy rain. Much of the area affected by this plant became not one, but two separate government Superfund environmental cleanup sites focused on dioxins and PCB’d. There is very little research on dioxin’s affect on people, but I have read that “there is no safe minimum for dioxin in the human body.” I have had body pain as long as I can remember, being told as a child that it was “growing pains.” In high school I was injured on a trampoline, damaging my lumbar spine area, but because of my family’s poverty I received no medical care. My back has hurt my entire life, despite every exercise and physical therapy I tried in later years when I had medical insurance. The pain gradually became more widespread and severe, and at age 29 I had exploratory surgery for endometriosis but no conclusions were reached. In my life I have been thrown from a motorcycle, fallen on ice on my back, been thrown from a horse several times, and fallen multiple times from stairs and ladders due to difficulty in lower body strength and coordination because of the back pain, which has been my dominant pain problem since my trampoline injury in high school. I have also had laser heart surgery to fix a high-speed arrhythmic tachycardia (280-300 beats per minute) which nearly killed me, and came out of that surgery with fibromyalgia, although it took 5 years for a diagnosis of that pain syndrome. Although my doctors wanted me to go on disability immediately when the heart problem was diagnosed at age 36, I loved my career and tried to continue with it, and certain controversial medications enabled me to work first part-time at an office and then full-time from home until I was 56, when the complexity and intensity of pain from my herniated lumbar disks and spinal stenosis, fibromyalgia, arthritis, tendonitis, carpal tunnel syndrome, kidney stones, bladder infections, muscle spasms, plantar fasciitis and bursitis made work as well as many personal tasks impossible to perform. By this time my husband had left me because he didn’t want to deal with my health problems, and I had many financial problems as a single senior woman struggling with health issues that required paid assistance from others. As my health worsened, I was granted disability at 58 but within six months was diagnosed with both diabetes and malignant melanoma (skin cancer). One month after two separate surgeries to remove the cancer, I was hospitalized with metabolic encephalopathy, a type of brain inflammation for which the doctors could find no specific cause. Although I had lost nearly 70 lbs to control the diabetes, I developed a blocked lower intestine at age 63 and was hospitalized for several days. The side effect of having a tube from my nose to my stomach to remove the blockage caused a long-term sinus pain complication, which I am still dealing with. Last year I developed eye pain as well, learning that I have dry macular degeneration in one eye (I am legally blind without corrective lens); additionally, I had to have 30 days of antibiotic treatment and subsequent removal of an abscessed cyst. Both the cancer and abscess surgeries have severed nerves, causing additional ongoing pain in those areas. Because of so much pain, I can no longer sleep more than one to three hours per night and am constantly exhausted. Needless to say, my life is extremely difficult, and I have lost the ability to do many of the things I need to do to take care of myself, as well as the things I did for the joy of the activity. I am unable to get out to visit family and friends, to date and develop relationships, to garden, to go camping, to play music, to sew and embroider–all things I used to enjoy. My insurance company has overridden my pain doctor’s recommended treatment and reduced my pain control medications significantly, and I live in absolute terror that the government is going to take away what medication I am allowed to have and replace it with something I can’ t afford or that doesn’t work, that my insurance won’t cover or which has unknown complicated side effects, instead of allowing me to continue to use an undeservedly controversial medication which is cheap, effective, and has well-known and controllable side effects.

9. My chronic pain from neuropathy and fibromyalgia is CONSTANT. Some days are better than others but Every day is filled with pain. I take Lyrica and Tramadol. The doctors will not give me anything stronger. Every other month I end up in the ER seeking something stronger to knock the pain out so I can get a good night’s sleep. My last visit at the ER the physician told me there’s really not much they can do for fibromyalgia. Some days the pain is so debilitating I can barely get out of bed and the neuropathy is so bad I can barely walk. I’m still young. I’m in my early 60’s but feel like I’m in my late 80’s. I NEED RELIEF!!

10. I’m a 63 year old, RN for 40 years, and on disability since 2017. I have fibromyalgia, scoliosis, and two bulging lumbar discs. I was taking the weakest form of Vicodin 3 times a day for two years. It enabled me to remain fairly active because it took the edge off my pain. My doctor is now afraid to lose his license, so he doesn’t prescribe narcotics anymore. Now my daily pain, in multiple areas of my body, is totally uncontrolled. I stay in the house and cannot even take walks. My quality of life has gone down the tubes. Chronic pain patients are being punished because of people that have abused narcotics. I’m totally disgusted.