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 do not appear right away.
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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 do not appear right away.
I was diagnosed with scoliosis at age 13. Then in 1996 I was in a near fatal accident. I’ve had 8 back surgeries, a neck surgery, lost 1/2 right breast, and the seatbelt exploded a 30 pound tumor on my left ovary. So that being said I had to have a complete hysterectomy. I have been in severe pain since early in life. I have a pain pump but it’s not enough to help take away the pain. I also have a spinal cord stimulator that runs 24/7. I am not an abuser of medication I just want to be out of pain. I was on 2 different medications and they helped. Then I was told I could not have oral medication or the patch. Please help us that are in dire pain. We just want to live a halfway comfortable life.
I am a disabled 68 year old Vietnam Vet. Before the opioid war on doctors my meds allowed me to hold a part-time job as manager for a 39-unit housing complex for graduate students. After the VA stopped my meds I lost my job due to my inability to walk more than 10 meters. My arthritis knee is now deformed from constant inflammation and pain. Now I spend my boring / unproductive days off my feet. I’m a burden to my wife and daughter. I want the life I enjoyed for decades before the CDC and DEA became the terrorists of doctors and pain patients.
It started 17 years ago. I had been having uncontrollable diabetes, brought on by a misdiagnosis of bipolar 1, and the psychiatrists loaded me up on SSRIs, tryclics, and anti-psychotics. That went on for ten years. Then, they discovered that I did NOT have bipolar 1 but was instead dealing with C-PTSD. By then, the diabetes that I had, that no one else in my family had, was completely out of control. My hands, arms, legs and feet, as well as my intestinal tract, were in constant neurological pain. NON-STOP. So a local GP decided to give me methadone. My first reaction was, “Isn’t that what they give addicts?” But I was assured it was great for nerve pain. And, it was! But I had to live with knowing that people in our small town thought I was some kind of lapsed junkie. This went on for nine years, and the newer doctor added ativan (for seizures, ocular migraines, and BPVV) as well as oxycontin for ‘breakthrough’ pain. I went to Florida for a three month visit and when came back I learned that I was cut off! ABSOLUTELY NOTHING … after 17 years of being ON opiates, just cold turkey! Today, I want to kill myself. I cannot see a way to live in this pain. I’m 63, eaten up with the diabetes that came from a misdiagnosis, and finally on good medications that work — only to have them yanked out from under me. What is a woman to do? Stay in bed, do not eat, do not drink … and die.
Hello fellow pain warriors and supporters. Support of family and friends is crucial when living with chronic pain and illness. So much of what I do daily, depends on my tolerance of pain, fatigue, mental exhaustion, to name a few. The past year has been spent mostly at home, has been the most challenging. I remember three years ago, I chose to rid my body of all narcotics after 8 years of use. My body had enough. I picked my bootstraps up and moved to Florida. It was risky, uncertain how my pain would progress. Well it did progress, add back surgery in 2018 and I had to move back to Pennslyvania. Prior to coming home I had pain management, a wonderful doctor who could only provide one script for 30 days. I have been unsuccessful at securing a doctor willing to treat my medical issues. I can honestly say that suicide has entered my mind, it seems to me a logical solution. If that sounds bad, of which it does, imagine how one must feel to justify suicide. Pain patients are being treated like criminals, this has to stop. Thank you, Shelly.
I was 23 when I was diagnosed with Ulcerative Colitis. I was in the hospital, with a 16 month old baby boy at home with my mom and grandma. They believe I developed it while I was pregnant at 21. The symptoms I had I thought were all post-pregnancy related. UC is a genetic disease and runs in my family, however no one else in my family ever got it to the extreme I did. I was in and out of the hospital several times.
Then in August of 1994 I went in for a week and was transferred to UTMB in Galveston with my family being told that I was not going to make it. 2 months later I had my first surgery, a total colectomy to save my life, and 2 weeks later I went home to my baby boy. 9 months later I had another surgery, that is when I learned that I was a bad adhesion (scar tissue) maker. 2 months later I had my third surgery leaving me at 24 yrs old with a permanent ileostomy. A year after my third surgery I went back to work, during that time I met who would become my second husband and a god-send.
During this time I did well, working, raising my son, taking care of my husband, however I was not healthy. I was constantly in and out of the hospital with blockages in my intestines caused by the adhesions. I worked for 8 years and had 2 more surgeries during that time. I had pain issues, but I just dealt with them with the occasional help of medication. My last year of work, I was 34, my health was declining and so was my mental health. I started having panic attacks, anxiety and depression. My doctor took me off work in December of 2004 at 35 years old. I had another surgery months later. 6 major abdominal surgeries and the adhesions were taking over my pelvic and abdominal area. The last surgery didn’t go well and I became severely anemic.
I had ups and downs for a couple of years and saw several GI drs, for pain and weight loss. 12 years ago the GI doctor I was seeing said there was nothing else to be done for me but pain control and sent me to a pain doctor. He over-medicated me and then after 3 years of seeing him I developed fibroid tumors and Degenerative Disk Disease related to my UC. My rheumetologist suggested back injections, I had to switch pain doctors to receive them. For nine years I have been taken care of by a doctor near me.
6 months ago he dropped me as a patient because of my multiple problems and he no longer prescribes medications because of the “Opioid Crisis”. I have had 2 more minor surgeries on my abdomen, one was in September to see if I could have a hysterectomy, because of the fibroid tumors, cysts and endometriosis and hemorrhaging. They could not see my uterus nor any of my organs because the adhesions are so thick and surgery is too dangerous for me. Both my gynecologist and gastroenterologist (multiple ones) have said they can do nothing more for me, all that can be done is control my pain.
My doctor is handling that temporarily as I have been unable to find a pain doctor that prescribes medications. I need the injections for my back, however they cannot do injections in my abdomen or pelvic area. It is painful for me to eat and I constantly get blockages and have what I call “episodes’ of vomiting and diarrhea. I’m very weak, pretty much bed ridden and only weigh 94 pounds. I was told today that they do not believe my intestines are absorbing the nutrients from the food any more. I am 49 years old. The pain medicine helps me eat, it helps my migraines, it helps the stabbing pain of my scar tissue and my back and neck. I’ve had arthritis since I was 40 because of UC and I have osteopenia and bursitis.
I have several health problems so this just adds to it. I wrote my congressmen last year and never heard a word back from them. I have no idea what to do. I’ve lost my faith in the healthcare community. I have faith in God, so I pray for a solution!
My story begins at the age of 17 when I was diagnosed with scoliosis. I have been dealing with the pain, only having taken ibuprofen. But a doctor I went to for my x-rays who was a chiropractor popped my back and I experienced no pain throughout the whole day. Thinking it was all over. The next day I go in because I woke up at 5 a.m. in excruciating pain, worse than it had ever been before. He tells me that oh that’s common and that he would have to work on my back 3 times a week for about a year at $200 plus a visit, yet not guaranteeing my back would or could be fixed! Now I don’t know about most people but $200 times 3 times a week for a year is a lot of MONEY.
EVER since then my back has been worse. They lost my records so I went back to get new x-rays and come to find out I also have spina bifida. I could no longer stand on my legs for more than 10 to 15 minutes without severe stabbing pain in both hips. I was seeing a doctor who got his license revoked for just prescribing pain medicine. Now, I can’t do even the simplest of tasks without my medicine. My daily needs like being able to wake up and get out of bed or things like I cannot brush my teeth every day. I cannot take a shower every day without being in severe pain. Imagining other tasks that are much harder than that are almost impossible … unless I push myself to the point where at the end of the day I can’t sleep at night, tossing and turning and crying. Then to wake up feeling like someone has hit me with an 18 wheeler … no energy and being in bed all day long, feeling so helpless and ALONE! But of course the government knows best … right!
They also have become an impossible thing for me to even get my medical records which took me several years to get all in order. And now the doctors that are specialists want records and cannot see you without records, or they request insane first-appointment fees of over 300$ to just be evaluated. All the while going through deadly withdrawals … dealing with that at the same time my mom was dying in ICU and I couldn’t get out of bed to even help hold her hand during that horrible process, with being an only child and no other family to help. I can only pray for strength right now, because facing the day alone in PAIN is the HARDEST thing I have faced since losing my mother.
I had cancer with subsequent surgical and radiation damage. I was out on a pain management program that allowed me to walk. With pain but walking. After the public crucifixion of pain patients my dosages were lower by two third so the amount of medication would be within an arbitrary number selected by someone other than my private doctor. It was a national maximum he had to pick. Now I walk with equipment and with a great deal of pain. My overall strength and general health is declining due to this inactivity.
Chronic Degenerative Arthritis. I have had both hips replaced, shoulder surgery, and two separate cervical fusions. I have scoliosis and have never missed a day of work except for surgery. Sometimes I just can’t deal with the pain, and head to my bed. I want to return to my active life. Pain medications help keep the pain stable!
I have been on opioids since August 26th, 1996. I have tried several times to stop taking opioids. But, it’s my severe debilitating pain has made me need pain relief just as a diabetic needs insulin.
I was diagnosed with Fibromyalgia in 1994. Biliary Duct Obstruction Disorder in 1996. Biliary Duct Cancer in 1998 (in remission since 2004). Osteoarthritis and Degenerative Bone/Joint/Disc Disease in 1999. Bulging, herniated, and pinched discs throughout my spine from my Cervical through the Thoracic down through the Lumbar to the Coccyx in 2000. Systemic Lupus in 2012 (Most likely misdiagnosed since 1995).
I am NOT addicted to pain medications. I do NOT ‘crave’ them. If I am addicted to anything I am addicted to pain relief.
Before the CDC handed out their blanket ban policy that scared every doctor who writes for any type of pain medication, I had a good quality of life. My dose was approximately 4 times as much as I take now. I was about to try to see if I could live without my SSDI check. I was active in my community. My marriage was perfect. We were saving up for our first home.
Now I am bedridden, bedbound, and my pain is through the roof. My marriage is falling apart because I can’t go on date nights, cook, clean, or do pretty much anything.
And, my doctor just got in my face during one of my recent appointments with him, and yelled at me that I am lucky that I am being prescribed anything.
I just want to live my life in peace and be able to LIVE! I’m not looking to go skydiving or to climb any mountains. I just want to be able to go on the occasional date night with my husband and to be able to cook.
According to the Bill of Rights, I have the right to “Life, Liberty, and the Pursuit of Happiness…” I cannot live with the pain that I am suffering from. I am being held prisoner by pain. With a quality of life of around 2, I am far from happy. I don’t even have the energy to spare to even pursue my happiness, never mind anything else…
It has been shown time and time again that when people take these medications AS PRESCRIBED, their chances of becoming addicted are less than 10%. I was told around 1998 that chances were that I would need to be on these medications for the rest of my life. I have come to terms with that. And, I take extreme precautions so that I do NOT accidentally overdose.
Unfortunately, I know several people who decided to kill themselves when their doctors told them that they were “cut off”. Instead of using titration, they cut these people off cold turkey.
This is tantamount to cruel and unusual punishment. We are being punished because people don’t know how, or who, to ask for help. They abuse their medication not taking them as prescribed. Then they try to get drugs off of the street and end up dying from overdosing on a combination of Fentanyl and/or Carfentanil. Because, people are both desperate and stupid.
Doctors need to figure out which of their patients are using them and who has a legitimate medical need for pain medication.
My mom is 71 years old and she had surgery over one year ago for colon cancer, and a kidney removed. She was put on all these medications, OxyContin and other meds, and now she shows no cancer. So the doctor from pain management is taking her off the OxyContin. She [was tapered down over a few weeks to one-sixth of the dose]. So now she has a hernia and is getting surgery in a few months. She has to lose weight (20 pounds) and she is in pain, crying that her hernia hurts. What can I do to help her so they can keep her pain down? She is waiting for surgery but that won’t happen til 6 months from now. What can I do to keep her in meds from the doctor, anybody know?