Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. My post..
   I have been dealing with chronic pain for 28 years. First diagnosed with fibromyalgia in 1994 after trying to find a diagnosis for 4 years. Since then I have had over 20 surgeries on my body. Some failed. Including two spine surgeries on my neck and a total knee replacement. I am also a breast cancer Survivor and have chronic pancreatitis. I also have arthritis and a few different bone diseases and the all too horrifying neuropathy. I am stating this just to give you a picture of who I am and what I deal with. I live in chronic pain everyday of my life. I get some pain relief from the medications I receive yet I’m afraid to tell my chronic pain physician that my meds aren’t working well enough. I am afraid that he will become fearful of me as a patient if he gives me what I need to be an active member of my family and society and who wouldn’t be? I understand the Physicians standpoint. Why risk your livelihood for people in chronic pain?
   I must tell you I can live on both sides of this fence that is being debated. I lost my 35 year old son on Mother’s Day in 2017. Yes to an accidental drug overdose. So believe me when I tell you that this is a painful and unbelievably hard fight for me. I would never want any parent to have to go through what I’ve been through but on the other hand I don’t want people to suffer like I suffer everyday. There has got to be a better solution for this problem! The suffering that I see on my social groups for chronic pain patients is beyond inhumane. The doctors are afraid that they are going to lose their licenses or be put in jail if they do their jobs! DO NO HARM! Is this America? I will never understand how we got to this point because some people decide to do the wrong thing. I agree that we need better Mental Health and Rehabilitation for drug addicts however I fail to understand why the people that are doing it wrong get better treatment than the people that are living by the rules. I am begging you to stop TYING the hands of good Physicians around this country because of a few bad apples. That is equivalent to jailing all police officers because one of them shot someone it illegally.

2. I had a allergic reaction toTHC The only way treat is hydromorphone by IV now what I was accused of being an addict and kicked out of the ER ! tHE DRS ARGUED IN FRONT OF ME! OUT OF CONTROOL

3. I worked for 20 years as an RN. I was a young widow with three young children.
   I’ve lived with pain since I was a child. They called it “growing pains” as I got older more joints were involved. One day the pain changed. I had dislocated my back. I tried to live with it for 6 months, but It just kept getting worse. The first surgery made things worse. The hardware broke & was hitting my spine a few inches above the fusion. I also started having lumbar instability, causing me to shake 24/7 . I got some neuro stuff. too. Pain through the roof. My good leg now didn’t work well. Last but not least I was alergic to the metal. And the fusion didn’t take.
   I wasted the first yr. listening to the surgeon…”It takes a yr”. I wasted the next year tying to get help in co. Every doctor in CO said to go back to original surgeon and have him fix it. He would not see me. Then I saw an add on TV.
   Two brother Doctors a Cedar Sinai looked at my mri. I went to LA. One of those doctors, the neurosurgeon, had to leave. The other, the orthosurgeon took the hardware out. He said no guarantees. It had been 2 yrs he did not know what would get better. I was told not to ever bend, lift, or twist or the fusion might break, because again it didn’t fuse all the way. It was better but still not good.
   My pain doctor finally found a mixture of things to make me stop shaking & make the pain tolerable. It finally worked. I had a small quality of life this summer, for the first time in 3 years. I got to play with my g-babies. I was still limited but I’d take any qualify of life.
   My pain doctor retire a few months ago. I can’t believe what I’m coming up across. I can’t even get past the receptionist/ma. to get an appointment. They don’t like the meds my doctor had me on. The ma told me to be completely off all meds and then they will see me.
   Why would they want me to go through that. I’m willing to change meds but I need a doctor to help me, and care if they work, not just prescribe them. What happen to the oath. If I had diabetes a doctor would help. Why am I the only one who cares if I can go out of the house, or if I shake, or if the pain is so intense I want to scream. A few crack heads abuse pain meds & all of us have to pay. Please…Don’t Punish Pain. I deserve a life.

4. I have Ehlers Danlos amoung other chronic conditions. Im in too much pain to even attend the rally. I was taken off my pain meds cold turkey with no offer of a taper. Never given a reason and never offered any other solution other than pacing, tylanol, exercise. What is being done to people is a mass genocide.

5. I have 2 vascular malformation tumors in my right elbow. I have had 10 ablations to get rid of them. Unfortunately the continue to grow. One is wrapped around my nerve that controls most of my hand. I have been on a course of opioid medicine just to help me live a normal life and not have to have it cut off as the doctors at Mayo want to do. As of Monday September 10 I have been told they can no longer prescribe my vicoprophen. So I will continue to try to function until I can not longer take the pain at all then at that point I will have no other option than to have my arm removed. The opioid did not completely remove the pain it just managed it but I at least could have a normal life. Also there was not step down given to me it was cold turkey cut off after 4 years.

6. As a former Paramedic, Nat’l Registry EMS Instructor & Fitness Instructor, I’ve saved many lives. However, the pain/fatigue I’ve suffered from since childhood, became too much to bare, rendering me disabled, ending my 9 year career in EMS & my dreams of becoming a Nurse Practitioner in 2002. My husband & father of my 2 young sons died a year later, leaving me widowed as well. As I was a very well respected, decorated Paramedic, in the medical community, I was immediately placed on a Pain Contract w/a diagnosis (Dx) of Fibromyalgia; a Dx which I’ve questioned the accuracy of ever since. Thus, began my years of medical research & as I saw my youngest son deal with the same painful issues that I had, an accurate Dx became ever more imperative. With the help of my physiotherapist, a consult with an Orthopedic Surgeon & a Rheumatolgist both confirming my suspicion; to make a long story short, I’ve been Dx’d with Joint Hybermobility Syndrome (JHS) & am awaiting genetic testing for Ehlers-Danlos Syndrome (EDS) which is a rare, genetic, connective tissue disorder that affects my joints, primarily. However the fact that my son & I also have POTS & other signs/symptoms, Vascular EDS is of extreme concern, as it can cause spontaneous Aortic, bowel & uterine rupture which has manifested in other family members.
   Initially, accessing life improving pain relieving medication via prescription by my doctors w/o any issues allowed me to implement a multi-disciplinary approach to managing my pain/fatigue. As I believe that the human body was designed to move, my Rx pain medication became a small, yet extremely necessary adjunct which allowed me to get out of bed & do the numerous modalities of treatment to manage my pain, including a form of physical therapy called Fascial Counterstrain, mild joint stabilizing exercise, stretching, constantly re-adjusting my body & Kinesiology tape to help hold it all together . However, because I’d gone misdiagnosed for so long, most of the muscles/tendons/ligaments that hold my joints together, have become so stretched, they’re like a sock that’s lost their elasticity,as explained to me by a Physiatrist. Hence, being able to move is extremely imperative to my health & w/o access to Rx pain releiving medication, I can barely get out of my bed, let alone take care of the numerous responsibilities of owning and maintaining my home, properties, vehicles, bills/banking, retirement acct. and most importantly, raise my sons. Being a contracted Pain Patient for 15+ years, allowed me to live the best quality of life possible for my condition. My sons have grown into outstanding, stellar young men; good American Citizens & men that anyone would want to be their neighbor. The aforementioned actions are not those that would indicate a person suffering from addiction; rather a positive, tax paying, American Citizen, who’s able contribute to society.
   In 2016, every patient on pain medication at the clinic I was being treated at, was pulled in by a Dr. from the D.O.J. who subsequently labelled every patient on pain meds. an “addict”; which was not only offensive, uncalled for and untrue, it set into motion 2 years of unnecessary suffering. In fact, at the time I was seen by the DOJ Dr. I had elected to try Suboxone in an attempt to try and bring down the tolerance that anyone who takes these sorts of medications for as many years as I had, would develop. Furthermore, this DOJ Dr. failed to do a physical exam of any sort, did not review the numerous tests I’ve underwent that show all the issues I’m dealing with, nor bothered to have any discussion with me as to why I was taking these prescribed meds for so long. Had he done so, he’d have seen that I was undergoing biopsies for a neurofibroma in my left brachial plexus, which was thought to be metastatic carcinoma, as well as the numerous tumors/cysts/lesions in my T-Spine, kidneys, ovaries, lungs, brain and hips; the multiple EMG’s/NCS’s that show a progressive worsening of the nerves in my legs. Because I found the side effects of Suboxone to be intolerable, I wound up withdrawing alone at home from both pain meds & anxiety meds which nearly killed me.
   I tried, earnestly, to live w/o the benefit of pain meds & was put on one antidepressant after another, which historically causes worsening depression. I was refused treatment by a Pain Mngmnt Dr. unless I underwent steroid injections, which I’ve tried w/o improvement. After trying to find a Dr. that would listen & take me seriously; again worrying about my son as well & being treated so abhorrently, I wound up in a state of “Failure to Thrive”, having a nervous breakdown, as I could no longer bare a life in so much pain; I was literally bed bound.
   Though suicide has never been an option; my sons need me, I fear that should my care be dictated by the government, rather than the Dr who treats me now, I’ll not survive. Please, as an American Citizen & former 1st-Responder, know that my life does matter, too.

7. My history started when I was in my late 20’s. I had constant urinary tract infections and was unable to determine why. I’m an RN and knew who to go to, signs and symptoms etc. I had to stop hospital nursing and began to work for a company that started to process Medicaid claims here in TX. I traveled throughout the state and educated any and all providers on state and federal regs. One week I was in the Valley and woke up with severe flank pain. I had stones in the past and went to the ER hoping to get some help. Evidently, the DR thought I wanted pain meds (1981) and instead gave me a dose of a medication the was 3 times the normal dose and said that’s all he would do for me. I was far from home and my own MD’s so I took the medication. I vomited most of it up within 30 – 45 minutes and within 2 days was in acute renal failure. It was downhill from there. After hanging on to my kidney function for a brief period the DR’s started to place grafts in my arms to start dialysis. But it seemed that I clotted the grafts off as fast as they got them in. So I was transplanted before I ever dialyzed and all looked good for about 10 days when I woke up to an empty bladder and a great deal of pain over the transplant area. They had to remove the kidney immediately and I started dialyzing using central lines. I was on the road traveling the state and dialyzing in whatever city I was in at 4 AM so I could keep up my work schedule.

   Things didn’t work so well so again the DR’s hunted down a kidney – I was 39 and I received my second transplant. I had problems with this one also but they were from the immunosuppressants I had to take due to the transplant. They did 5 surgeries within 6 weeks of the second transplant and finally had to put mesh across my lower abdomen due to my incision from opening up .. This was terrible but I worked through everything.

   Just when my husband and I thought things were improving I started to have severe groin pain in both legs. I’m an RN but I sure didn’t specialize in orthopedics. I had avascular necrosis (AVN)in both hips due to the steroids I had to take every day to keep from rejecting my kidney. First the DR’s tried core decompressions – big holes drilled into your femur with the hopes of filling the holes in with bone as well as the femoral head which was so painful I would cry in the car going back and forth to different cities. This was just the beginning. Over the next 26 years, I had 9 hip replacements (revisions) in my L hip and 10 in my R hip. My last surgery on the R hip removed my gluteus maximus (big muscle on your buttock) and wrapped it around my thigh to try to keep the hip in for as long as possible. I was told I would not walk after 3 hip replacements/revisions but I stumble around. In addition, while they were doing my hips I was diagnosed as having severe AVN in my right shoulder. I began having surgeries (shoulder replacements) on this joint until after the 4th revision my humerus broke about halfway down. It did not heal and I was told I needed a humeral implant in addition to another shoulder replacement. By this time my shoulder was dislocated so badly, it would poke my chin. It was either remove the arm or have the large bone in my upper arm replaced with Titanium – this included the shoulder, the humerus, the elbow with a pin placed in my ulna to help hold it in place. I had the humeral implant in January 2014. Within 2 months my hip had dislocated again and the surgery where they wrapped my guleus maximus around my hip was done. I was unable to use crutches, my walker or rollator, and was left with holding one cane in my L hand to walk. I was screaming in pain at times and terrified of falling. I was offered an electric wheelchair but was afraid of losing my ability to walk. I have a manual wheelchair that I can only use if someone pushes me. After my first humeral implant, my husband and I noticed my shoulder was dislocated again. Every time I went to see the surgeon for post-op visits he wanted to wait before repairing the shoulder. Six months post op he did repair it and because the dislocation was very severe my nerves and blood vessels had shrunk and I lost about 5 1/2 from my primary arm. By this time I had 3 very invasive and painful surgeries in a 6 month period – had to have blood and iron transfusions to keep me going. I haven’t mentioned that again, during the hips and shoulder problems I had congenital back problems from my cervical spine to my sacrum and everything in between, I finally gave in and had 2 herniated disc fused in my lumbar spine. This occurred in the mid-1990’s. At times the surgeons were discussing what needed to be done first. Hips, Shoulder, spine?? And of course be careful of that kidney she might die. I worked until I was 51 then applied for disability. I filled out the forms myself and was approved in 2 months in 2001. I was constantly having surgeries, back and shoulder injections etc. After my 5th hip revision and 1st shoulder replacement, I went to a pain specialist. I have seen him for 24 years. I continued to fall throughout the 2000’s to this day causing a broken ankle that was pinned multiple broken toes and many cuts and bruises. In 2015 I started to have severe pain and swelling in my R knee. The pain DR did an ablation which was one of the most painful procedures I ever had. I should have known what was causing the pain – AVN was back. When I finally had my knee replaced the surgeon said it fell apart in his hand. I have done PT, OT, Mckensie therapy for my neck, a year of acupuncture, biofeedback, psychologist, and as mentioned above many injections of steroids into my back and shoulder.

   I haven’t mentioned my annoying pains – carpal tunnel, terrible neuropathy in both lower legs and feet, hands and fingers. My cervical stenosis and disc disease and Kyphosis cause headaches and pain down my L arm as well as numbness in my 2 outer fingers. In 2 days the pain DR is going to do an ablation of the medial nerve at the L5-S1 facet joints. I hope this will take away this one very severe and constant pain. Next week I’m supposed to have my L shoulder injected. I hope the pain I’m having in my only good arm is just a piece of calcium that was about as big as a nickel sitting on the rotator cuff but I’m still worried about more AVN. The pain DR is cutting my meds and I can hardly get out of bed so I can’t go to the rally. If they stop my meds I’m done. I’m 71 and been on narcotics for 24 years without a problem. I have never failed a urine test, lost any meds, asked for more meds etc. But I’m just done. My husband says he kept track of my surgeries and they are at around 70. I didn’t mention the problems I had with my artery that led to my transplant kinking up and the major abdominal surgery I had due to that. I have a short L leg and a very short R arm. They cut all the rotator cuff tendons in my R arm so I can’t move my upper arm away from my body.

   I no longer live with chronic pain. I fought very hard for a long time but I feel like the plug is being pulled by a bunch of strangers.

8. I am a disabled Marine Veteran which I have had 9 major back surgeries starting in 1999 to my last one just a month ago. I am so tired of hearing about the opiod epidemic, I need the pain medication due to major chronic pain which I need just to get through the day. The people that need the pain medication should not be punished. I may need to go to the streets for help which I don’t understand. I can not help my condition, I just want to live the best I can, is that asking to much?

9. I was in a car in accident in 1996 when my tie rod broke on a 91 mustang gt gong down I75 in finley, ohio. I ended up with 10 disc out and all the extras that go with it, all 6 of my lower lumbars and c3-c6 in my neck are damaged. I turned down pain meds for years only used muscle relaxants when spasms got bad and hot baths wouldnt help. Pain finally got so bad in 2005 I went off work on medical for some procedures, shots & therapy for few months well somehow that made things even worse for me.

   Now in a ton of pain, I cant take it anymore I start taking opioids and let me tell you I went through a ton of meds before finding one that was right for me. I have 3 kids I didnt want to be groggy or clock watching and most importantly I didnt want to feel high. After a few years of trial and error and mostly because now I had lost my job and had no money I was introduced to methadone and it was the best thing that has ever happened to me. I feel like myself mentally all the time, I still have bad days in pain, its not a cure all but I cant imagine having to go back to living without and being bed bound for life. Last 9-10 years I have been on the same amount no more no less everyday and it still works great! I have not had 1 incident in all the years Ive been taking opioids I only take what the doc says too. Make no mistake about it my quality of life still isnt great, I still cant sleep for long periods of time, I have to get up sit in my chair or pace the halls a couple times a night til i can get the pain to reside so i can go back to sleep. I still have days I cant do anything but rest but I also have days I can cut grass, play with my kids, shop and do therapy workouts.

   I really dont understand why Americans would want other Americans to suffer even more then they already do. Trust me I know chronic pain patients arent the problem we are treated like criminals now as far as im concerned with all the pill counts and drug tests. For some reason people just dont understand pain until it happens to them, I know I didnt. People need to remember we didnt choose this life of pain. We need our meds just so we can stand to be in our own bodies. We should not be punished because of others. Chronic pain patients arent the ones out there eating poisons, detergents, allergy meds, paint chemicals and god knows what else jsut to get a buzz we are the ones that take our meds exactly as directed by the docs everyday. This is AMERICA- PEOPLE SHOULD NOT HAVE TO SUFFER

10. I am 70 years old and a retired RN. I am writing in regard to the overreach by the federal government (DEA and CDC) in trying to stop the opiate problem which I perceive is an overreaction to outlandish negative media reporting. A back injury 26 years ago caused me to have to file for disability and reluctantly leave a career in nursing. The injury caused permanent damage to my lower back and osteoarthritis in my back, hips and other joints. Unfortunately, I cannot take Tylenol because of liver problems or Advil because of kidney failure. Consequently, I have been on large dosages of oxycodone (220 mg) to treat my pain. I have never experienced euphoria and after 17 years, I have never been inclined to abuse or divert my meds nor have I ever overdosed. Since the CDC and DEA have ordered doctors to reduce my meds by 2/3, I am having problems with excruciating pain. In fact, I am practically bedridden and can no longer get out and about, play with my grandchildren or do any of the things that make life worth living. I truly believe that the federal drug police have shortened my life or at least my quality of life in just the past two years of this unwarranted crackdown on opioid medications across the board, to include persons like myself who suffer from chronic pain. As a side note, two other examples of the results of this more severe regulation of opioids are (1) when my husband underwent his third surgery for cancer, his pain medications were obviously less available than in his first two surgeries during the previous 5 years and (2) my pain doctor is getting more gun-shy about my opioid pain care following two separate DEA inspections in recent years.