Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. we’re working with providers to avoid this same story from repeating itself. I’m so sorry for your troubles. Please know we are doing everything to find a solution.

2. I have been in pain management since the late 90s. After a lot of trial and error and many steroid and epidurals blocks you name it , I was finally on a dose of morphine I could have a quality of life with until I changed doc to try the RFA or nerve burns. At first my new doc left me on same dose I had been on for years then suddenly cut it in half ! I have felt plum unnecessary ever since , I’m getting anothe RFA the 12 of sept and will try again to get them to just put me back on the dose they had me on when I walked in their door , as for now no quality of life and I’m going downhill fast , don’t feel like doing any of the things I used to and carry that hurting throb in my lower back

3. I have a neck fusion done and 2 back fusions done I have herniated disks and bulging dicks I can’t work bend strech or walk a long period of time I have Sciatica nerve problems that go down my legs and to my legs my feet and also It also travels up around my hips and my back I can’t sit in the car a long length of time I have pain in my feet like burning 10 stations in my legs light th I have pain in my feet like burning sensations in my legs like they’re on fire I cannot Lift my arms up above my shoulders because of a doctor not doing the surgery right I also have restless leg syndrome I suffer from migraines so the fun part is I want to my doctor today to get a refill on my medication and he completely stopped everybody including me off our medication There was a 89-year-old woman saying the the doctors crying saying he Cut me off my medication didn’t even wean Me down just completely stopped in writing our medication so I don’t know what I’m I post to do nobody taking patients me down just completely stopped writing our medication I’m in severe pain I never fail a drug test always on time for my appointment he walk in and said I’m not writing script for pain anymore and walk out.

4. So I go into my doctors office today to get my monthly refill Doctor says I’m not writing it no more and and he’s a pain management doctor I’ve been seeing for six years seven years Didn’t even give anybody my medication to help wean them self off or give them something else temporarily like Suboxone or whatever so they won’t feel sick or something I’ve called every pain management doctors offices are overbooked not taking new patients everybody his practice was going to him for pain medication was also cut off medication I’ve been seeing him for six years I’ve never had a bad piss test every single month and pain pill counting I have a rod in my neck in a chain that look like a chain from my MRI down my back that looks like a motorcycle chain I can’t bend I can’t lift heavy stuff I’m constantly in pain my legs always feel like they’re on fire and burned so bad nothing can’t touch it and I also suffer from sciatica with problems my legs in my lower back and I also have arthritis degenerative disc disease bulging disc herniated disc and my doctor walks in the room and says I’m sorry we’re no longer writing pain medication no more if you don’t like it find another doctor people in the waiting room or Crying they didn’t know what to do everybody office is booked because it is happening long story short I do not have any medication he should’ve weaned us down and then it would be better and give us time to find a new doctor instead of just stop been sick all day I can’t lay down I can’t stand I can’t walk everything hurts on me I just don’t know what to do I saw 89-year-old woman in waiting room in a wheelchair at the office crying her eyes out and she said He took everything from me what am I going to do I’m not living my life in pain I’ll probably be dead by tomorrow her I didn’t know what to say this prick of a so called pain management doctor just opens the door of the room and says I’m not writing no more pain scripts I bet if it was his grandparents,self our wife and kids he’ll help them please publish his name so everyone knows how he did us but they was gladly to take our copays..,,,,, Hitch wasn’t returned,His name is RALPH CARBONE JR in south bend Indiana on Edison street please get this out

   my best to control her and have her look around for doctors office but she has sister that she’s tired of it and she wanted things to be done I’m afraid she’s going to come at suicide why live this long to commit suicide why because the doctors take the pain control away from people who need it and nobody wants to be in pain 24 hours seven days a week

5. My son age 39 has suffered from chronic pancreatitis for 12 years. He has intractable pain. In order to be a productive member of society, to be able to work, to attend church, to take care of his family he needs pain medication. His medication is under the supervision of a physician. He only uses one drug store and one doctor. Chronic pain patients do not use opiates to get “a high” they must have them so they can have a life, he follows the rules. Legislators should not get between doctors and their patients. The deaths from opiates are caused by illegal use and by street drugs.

6. My pain story starts on a rainy day in August of 2003. I was leaving a special needs preschool carrying my client when I slipped and fell on a wet wheelchair ramp. This fall put me into the workers compensation system. This system is set up where you have to prove you are injured. Even when xrays, CT scans, and MRIs show that there is something wrong. I waited almost a year and a half before begging for surgery. I had tried physical therapy, chiropractic care, and acupuncture, and steroidal epidural injections. Nothing worked to help my pain except opioid pain medications. As I was only in my 30’s I didn’t want to have to spend the rest of my life on these medicines, especially due to the stigma that is put onto a person needing these medicines in order to live. I was already at that time dealing with the beginning of my journey with fibromyalgia, and had received trigger point injections, and Botox injections for thoracic outlet syndrome in my upper right chest and shoulder.
   In early 2005 I underwent my first back surgery. I had a 2 level spinal fusion with intervertebral spacers. It was supposed to have been a one level fusion, My CTs, and MRIs before hand had only ever been done to show damage in my llumbar spine, When my surgeon opened me up he found not only a fractured L5 but also my first sacral vertebrae was fractured. Along with herniated discs at the L4L5 space and the L5S1 space. This then increased my surgery time from 6 hours to 13. I then spent almost 7 days in the hospital recovering because the nursing staff became overly concerned about the amount of pain medication that I needed to recover safely from this surgery. I was also on Cymbalta at that time to treat my depression from not being able to work, and from living in pain. It was not well understood that the patient can not just stop an SSRI abruptly, that they must be weaned off of it just like many other medications. Since it was a new, and expensive medication at that time, the hospital I was at did not stock it. My husband ended up bringing in my medication from home for me to use.

   For 6 months after the surgery I wore a bone growth device to help cement my fusion. Unfortunately it did not work exactly as planned. I did do physical therapy after my initial 6 weeks of healing. I was able to wean down off of almost all opioid medications and muscle relaxers over the 6 months. I did still require the use of Tramadol ER twice a day. I was diagnosed with failed back syndrome. Even though I wasn’t completely out of pain, I was able to function. I continued with chiropractic therapy, massage therapy, and yoga, and light weight lifting. At 9 months post op I returned to my career as a Licensed Practical Nurse.

   Four years back into working I had an accident at work that pulled the intervertebral spacers out of alignment in my back, and they now sit on the spinal nerves at L4L5 and L5S1. This creates constant intense burning pain in my lower backs and buttocks. My original fall in 2003 had done some damage to my SI joints. This next accident caused further damage to my right SI joint, I again underwent back surgery for a revision of my fusion. The instrumentation on my right side was removed, and some overgrowth of bone was filed off in different areas in my low back. Unfortunately this surgery did nothing to alleviate my pain.
   Because of this nerve compression I not only suffer with constant unremitting burning nerve pain in my lower back, and bilateral sciatica pain. I have intense muscle spasms and muscular pain in my low back and buttocks. My fusion is no longer stable, as well as my SI joints, so every now and then my spine will shift and I get bone grinding pain that is incredibly intense. This pain will drop me to the floor at times. There is no cure or surgical fix for this.

   I have undergone numerous steroidal epidural injections, radiofrequency ablation, and nerve blocks in attempts to alleviate some of my pain, Sometimes they help, more often they do not, Due to the large number of injections I have had into my spinal cord, I have grown scar tissue in those areas. This itself has caused increased nerve pain and muscle spasm. I have also developed facet joint disease in my thoracic and lumbar spine.
   In 2011 I underwent a triple laminectomy to my thoracic spine for the placement of a paddle lead for a spinal cord stimulator. This stimulator was supposed to help decrease my lower back pain and sciatica pain. It only helped my sciatica. That was helpful in some ways, but has still left me reliant on opioid pain medication in order to just get out of bed.
   In the intervening years my thoracic outlet syndrome worsened. I again underwent physical therapy, and injections in an attempt to stave off surgery. These attempts did not work. Even though surgery for thoracic outlet decompression did give me some relief, I still require trigger point injections, and Botox injections to help keep that pain managed.
   My fibromyalgia has progressed over the years. This makes me feel like I have the flu on an almost daily basis. It can affect my memory and recall ability at times. It has also caused a secondary condition called costochondritis, an extremely painful inflammation of the ribcage. This condition has not only caused pain, but can sometimes feel like I can’t get a full breathe. I have undergone nerve blocks and injections into my sternum in an attempt to alleviate those feelings. I have recently started using hemp CBD oil to treat my fibromyalgia with some success. I only wish that it had been available to me sooner.
   In April 2017 I had the battery component of my spinal cord stimulator surgically changed out, as my first battery was failing. This new technology still only gives me relief of my sciatic pain. Unfortunately the new technology is also now affecting my nervous system negatively. It has a wireless connection to the remote that I use to change settings. I react negatively to this signal. It did take almost a year for the signal to build up in my nervous system before I felt the adverse reactions that I do. In that time I had undergone another surgery to add another stimulator to help manage my low back pain. This stimulator provides stimulation to muscles peripheral to my spine by percutaneous leads implanted deep into my muscles. Adding this stimulator did allow for a minor decrease in my long acting pain medication, and my short acting breakthrough medication. Unfortunately adding another wireless signal to my nervous system has added more adverse effects. I get horribly painful headaches, I feel pounding constantly in my cheekbones and jaw. My arms become heavy, and difficult to lift. And they will occasionally flap unexpectedly. Because of these adverse effects I have to be judicious in my usage of my stimulators, as no manufacturer makes a wired system still at this time.

   This has required me to increase my usage of my breakthrough opioid pain medication again.
   I am on what is considered a high dosage of long acting pain medication. My dosage is at 240 MME. I can not see me living any type of quality of life if I was made to decrease to the 90MME that is being recommended as the only safe high dosage. I have needed a high dosage of medication since 2009. I have needed increasingly higher dosages as my condition progresses.

   I have tried aquatic therapy, mindfulness, acupuncture, massage, and physical therapy. None of these have given me even short term relief of my pain.

   My pain management doctor and I discussed the CDC guidelines before they were officially put out. He didn’t feel that they would impact his ability to care for his patients, as they were only supposed to impact primary care physicians prescribing. And there was no recommendation of lowering dosages at that time either. Now he is afraid for his practice. He is upset that he can’t provide the care that he trained for.

   I started in the medical field back in the late 80’s. I saw our elderly suffer in pain every day because we didn’t treat their pain. I saw cancer patients suffer needlessly the last days of their lives because of the stigma, and fear of addiction from medical professionals. Then I got to see the tide turn to compassion, and dignity for the dying. My greatest fear is that this compassion is and will be lost unless something is done to stop the hysteria and negative stereotyping that was being removed from the healthcare setting.

   Thank you for reading my story.

7. Hello my name is Beverly and I had failed ulner nerve surgery and when I woke up I knew something was wrong !!! The nurse kept telling me to be quiet!! It was a cold snowey day and only 3 patients showed up for surgery. As soon as they got us out of there they got to go home! So we lived 3 hours away… I called several times during the net three weeks saying something is wrong. They just kept saying the cast is probably to tight and to wiggle my fingers and I told them I couldn’t!!! So when I finally got the cast off the Dr did a special bone scan and told me that unfortunately I had rsd!! I said what is that and how long before it goes away!? She handed me a stack of papers and sent us on our way!! By the time I got home I was a puddle in the floorboard thinking I had just been given a death sentence!!!! This monster started in my left elbow/arm/hand 9 years ago and has since spread to my left leg and foot!! My right foot, my left and right hips, my right hand/arm/elbow ( I had the same surgery on the right side) I actually had it first!! My eyesight is horrible. I can barely read! I am not allowed to drive anymore, I spent most of my time in bed because I fall so much that I can’t afford another hit to the head!!! I desperately need a service dog ( a big one) to walk beside me a alert me that I am fixing to start my shaking and fall! It resembles Parkinson’s! The shaking can last for hours or days with no rhyme or reason!! My legs give out from beneath me and are on fire and all I can do is cry!! If these struggles aren’t enough…. and I just skimmed over them, know my general doctor refuses to give me my pain medicine that he has given me for 9 years!! I get nothing but grief from them!! They treat me like a druggie!! They look so condescending at me!! Run me through the mill about refills!! I finally have an appointment with yet another pain mgt. group this month! I’m not holding out much hope that way I won’t be dissapointed!! I have had every test known to man ran on me!! Cried from all the pain they put me through been bed bound for days after from the effort it took to go through it all!! And now the govt. wants to take away what little relief I do get!! With pain meds I live my life at a 5-6 on the pain scale. Without their is no limit!!! I know why they call this the suicide disease!! People just can’t take the never ending pain anymore!!

8. IM Hurting so bad I’m lying in bed .the pain I’m in makes it impossible for me do anything. I can’t take care of my self anymore .to live in this pain is inhumane.I cry pray to God to please help me .I’m SUFFERING TERRIBLY without the proper pain medication I can not live in this pain. I would rather be dead . I was in a bad accident in 2003 three bleeds in my brain fractured back neck and broken collar bone that never healed right .I was paralyzed on my left side .I’m able to walk with hard work .my left side is slow .With the pain medication I was able to clean shop drive help my children play with my beautiful grandchildren I had a life .I was even able to ride my horse which was therapy for me help me physically and mentally witch I can’t do because of disabling pain .2006 I had bad epidural injection in my neck with a bad Drug depro medrol that causes arachnoitis no cure and pain as bad as cancer pain 2007 horrible pain stimulater surgery that was place in my skull . it was to be put in my upper back the pain stimulater went up by its self causing me to be put on blood pressure meds until it was removed .I had it removed 3 months later .I got home I couldn’t think had new and worse pain in my feet legs and butt panic attacks .The medication I’m on now does not touch my pain to be able to take care of my self I need the pain medication to have a life .please help me 😭😥😰😢
   I have tried everything to get out of pain .laser surgery stem cell therapy pain stimulater surgery acupuncture chiropractor physical therapy massage medications suppulments vitamins bought exercise equipment that was painful to use meditations tapes therapy couseling pain classes epidural injections and other injections. creams and so much more I can’t remember right now
   I have brain injury spinal cord injury pinched nerve in my neck and in my back bulging disks fibromyalgia Lyme disease CHRONIC pain syndrome stenosis arthritis degenerative joint disease hyperrflexia spondylosis of cervical. EVEN WITH ALL MY PROBLEMS WITH THE PROPER PAIN MEDICATION I WAS ABLE TO HAVE A LIVE TAKE CARE OF MY SELF DRIVE CLEAN PLAY WITH MY GRANDCHILDREN I WOULD FEEL LIKE A TON. OF WEIGHT WAS REMOVED OFF ME. The medication was made for these problems and it works It has helped and changed so my peoples lives for the better can you imagine living in unbearable pain 24-7 for years I don’t think you’d have a clue unless you have it .I would of never believed it ..UNTIL IT HAPPENED TO ME .SO PLEASE HELP ALL US WHO ARE SUFFERING AND THERE MEDICATION TO HELP WITH CHRONIC PAIN JUST LIKE FOR HEART PROBLEMS DIABETES KIDNEYS LUNGS LIVER AND MORE THAT ARE NOT BEING TAKEN OFF THEIR MEDICATIONS AND MADE TO SUFFER .YOU PROBABLY KNOW SOMEONE WHO DEPEND ON THESE MEDICATIONS TO LIVE
   SO PLEASE HELP ME AND OTHERS IT BREAKS MY HEART TO SEE PEOPLE IN PAIN AND MYSELF 😭😞😰😣😢😪😱😵😭

9. I am 61 year old female with chronic pain and a multitude of other symptoms and diagnoses. This is my 30th year of living in pain. My Doctor is very upset with the latest rulings from the FDA. He told me that I should write letters to all concerned. He said his hands are tied and he would have to abide by the new laws and dose down all of his patients. This has been, for the past 8 days, the worst part of living life. I am angry with outside entities tying my Doctor’s hands with concern to my medication. I have written the letters and will be sending them to the FDA, my congressmen and women, the President and any other person who will listen. We need to be heard. This new law will not stop opioid overdoses especially for responsible chronic pain management patients. It will not stop the drug dealers or the countries shipping illicit drugs to the United States.
   People who are responsible for their medications are not the problem. This is what the real issue is. Let’s all get involved to see that we do not cripple the chronic pain sufferers.
   Thank you for your time and God bless the USA.

10. Fifteen years ago I was a happy, newly married, registered nurse with a great job, great husband, new grandbabies, fun filled, adventurous life. That was until I was diagnosed with rheumatoid arthritis. I had been having continually worsening pain in my hands, elbows, and knees to go along with my degenerative disc disease and multiple back injuries. I ignored the pain for about two years until I realized I was having trouble opening meds, spiking IV bags, and as I worked in cardiac surgery, trouble holding pressure on arterial sites after cardiac caths. I also was having difficulty with chest compressions during codes, and in general with positioning and assisting my patients. I had noticed my painful joints for a long time but when it started interfering with my patient’s safety I had to see my doctor. I was immediately referred to a rheumatologist even before the bloodwork came back. I was started on meds and my hope was that with medication, diet changes, exercise, and a little luck, I could continue to work for many more years. Unfortunately it didn’t work that way. My RA progressed quickly and my Dr had little to no luck at putting my disease into remission. Within two years they had added fibromyalgia to the list, followed by peripheral neuropathy, osteoarthritis and increasingly worse, and more painful, back issues. Within two years I had to quit working due to the level of pain, the stubbornness of my illness, and the fact that I simply could no longer do the job. I’ve spent the next 13 years with continuous medication changes, and ever increasing pain. I’m now to the point where I am rarely able to leave my home. The loneliness and isolation and 24/7/365 pain is sometimes almost more than I can take. The politics of the opiate debate is infuriating and terrifying to people like me. It’s a vicious cycle as autoimmune illnesses are made worse when stress and fear are in place and they want to take away the one thing that can ease the pain and let us have a chance to be a little more “normal”….. at least as normal as is possible. If they think that people like me haven’t tried other methods of easing the pain, they are very wrong!! In the course of any given day I use heat, cold, exercise, rest, diversion, and many more ways to just get thru the day or sometimes to just get thru the next 5 minutes. Shall we talk about sleep? Let’s just say that most of us don’t even know what a full night’s sleep even feels like anymore. There are nights where my husband gets up to get ready for work and finds me pacing the living room floor because I can’t find a way to ease the pain. Oh yeah, I forgot to mention, remember how I said I was a newlywed when I was diagnosed 15 years ago? I have had to sleep in a recliner for the last ten years because I can’t sleep on my back due to all the back injuries, and I can’t lay on either side because the pressure on my hips is too painful to allow me to sleep. I haven’t slept with my husband for ten years due to the pain, and you can take that statement literally and figuratively. Chronic illness finds ways to rob us of a normal life in so many ways and most often pain is at the center of all of it. The pain from both the RA and the fibro makes it almost impossible to give or receive a handshake, or a hug. I have grandchildren that I have never been able to pick up or to hold because they live several states away and by the time I get to be with them they are too heavy for me. I have one grandbaby that I haven’t even met yet because traveling is extremely difficult . I’m watching them all grow up in pictures and videos because the pain keeps me from traveling most of the time. I belong to several online RA, fibro, and chronic illness /chronic pain support groups and most of us are terrified that the politics of the opiate issue is going to result in the complete blocking of the medications that are all that allow some of us to be able to do things as simple as our own daily care. Opiates are not going to give us back the missing hugs, adventures, dances, careers, etc in our lives. They simply allow us to shower, dress, maybe make a meal, maybe go to the store, maybe get a hug from a grandchild or child or spouse. Nobody is looking to get high, they are looking for a little bit of normalcy in their lives. For me it is a fight to maintain the little bit of independence I have left. For those of us who jump thru all the hoops to get our medications, it’s time to leave us alone and concentrate on finding ways of solving the drug problems in this country that don’t include victimizing those who have chronic illnesses or injuries who fight every day to just get thru the day.