Share Your Pain Story

997 Replies to “Share Your Pain Story”

1. I have had severe back problems for over 10 years. I have seen pain management doctors, done therapy, had too many epidurals, take pain medications and still I am in pain. My pain meds have been reduced to where it doesn’t do very much for me. I have severe osteoporosis and COPD with oxygen 24/7. My quality of life has been reduced to being in bed crying from the pain. I have grandkids that I can’t even enjoy being with because of the pain. Why is this happening to us.
   Why are we being punished for what the dope dealers are causing. You say there is an Opioid Epidemic, who is it happening too because we sure aren’t getting the pain meds.

2. I’ve been dealing with chronic pain for a decade. It got bad enough to be referred to a PM about five years ago. Two bulging discs, sciatica and SI joint issues.

   I’ve been lucky enough to have a good PM doc, but I don’t receive a high dose of PM’s. But, she is caring and will listen. So I count that as a win.

   However, because I take PM’s, I’ve had to do repeated courses of expensive PT. I’ve had two sets of three shots in my back and a set of two in my SI. None of the back shots helped. The SI did help about 50% but for only about two months.

   Why must we be subjected to all this extra and EXPENSIVE therapies if they’ve shown before that they didn’t work for us? I definitely understand trying it the first time. But if someone doesn’t want the shots, they shouldn’t be made to get them in order to get their PM’s.

   What bothers me greatly is the fact that our rights are being taken away. With NarxCare, our due process rights are taken away. Police can see our info with no subpoena?? We can’t correct any errors or offer explanation because we aren’t to know our score? How is this right?

   Now, they’re passing laws and regulations similar to the Red Flag Laws for firearms. Everybody was perfectly fine when it was because of guns. But now that it’s encroaching on our medical rights… now everybody is angry?? Very hypocritical. This takes away due process!

   This is why you must protect ALL rights… even the ones you don’t necessarily agree with! If we hadn’t allowed the Red Flag Laws, they wouldn’t have even thought about this new one. You let them take away one right for one reason, and they’ll keep doing it.

   The MSM started this crisis and they need to end it. All because of their news cycle, they’re hurting millions and killing thousands from suicide.

   The government needs to stay out of our doctor’s offices. So many doctors are terrified of losing their license, and rightly so. The DEA is targeting anyone so they can appear that they’re fighting the “opioid crisis”. So many good doctors have had their lives upheaved and ruined from this.

   The pendulum is starting to swing back some, but ever so slowly.

   We need to stay strong and keep going…we’ve got this!

3. Hello.

   Tips and tricks to know about RESPONSIBLE, PRESCRIBED, low dosage, opioids….

   1) People do abuse the drug- because it works to elevate mood. This is half of how it helps with pain- opioids also flatten pain symptoms. Pain relief is attractive.

   2) Media, others, play math and word games with opioids. A low dose for a year is 5 mg, 6 times a day- that is over 2,000 pills a year- enough for a prescription for 100 people after a dentist visit. Anticipate, fight against, math and word games.

   3) If you have no pain problem- much better off without the downside of pain relief- real life impulses are muddied- however, if pain locks you down, makes you get weaker (Deconditioning) as you circumvent pain by avoiding activity, opioids in low dose SAVE LIVES as we do not weaken as quickly and our quality of life, health, also improves. No one dares tell this truth!

   4) It is a FAT LIE that one is permanently addicted in a week- (I don’t know about hard drug use) opioids are the ONLY drug I know of (salt, sugar, chocolate, motrin, caffeine, alcohol, weed, etc) that stably works day after day, year after year at low dosage.

   Pain relief is attractive- but as we are now treated like a suspect, there is nothing you can say to express this truth adequately. Notice you cannot hire an attorney for a court case- the Medical Industrial Complex merely infers you are suspect. It is a breakdown of the U.S. constitution and amendments because nobody has charged you (or me) with any wrong. See?

   5) There is a vast, medical, industrial complex which has MAJOR PROBLEMS inside it- they cannot hold meds for pickup because (AS I RECORD THEM SAYING) …the staff will ..take.. your meds… . They conceal their problems by deflecting onto, blaming the muted, end, patients.

   Remember the Navy Seals caught abusing opioids? They were used as scapegoats so the MEDICAL STAFF supplying opioids remains hidden and untouched. Even the Seals, so true, honorable, are used like scapegoats by the Medical Industrial Complex. Only civilians can speak up for us all. See how that works?

   Many will die owing to the overreaction to the opioid crisis. The massive increase in opioid deaths was instigated by another, rival, nation producing and sending us enough Fentanyl to kill every US citizen monthly, both through USPS and across borders.

   If you risk acting up, speaking up, protesting, remember you are fighting the good fight, and this does not conflict with efforts to control the ACTUAL opioid (Fentanyl) crisis.

   Do not trust anyone but yourself, family, to keep paper medical records. A PAPER phone record, despite phone calls being mostly useless, is helpful should you ever go to court for help or relief. Time, Date, actual name of whom you speak with (good luck with that if the V.A.!) and the reason the call was made to or from you. Keep it short so you can keep it up.

   Sad truth. Doctors are isolated, insulated, automated away, played like fish. I do not know what to do about this. Doctors are blocked from reporting harms (of any kind) by other doctors or the hospital staff- they are shunned, end up in dead end, dirty work, jobs if speaking up or lose their career or retirement. This is why patients must speak up while Navy Seals, Doctors, others, cannot.

   Ham

4. My name is Jennifer Strange and I’m 45 years old. I have Degenerative Disk Disease (DDD) in only my cervical spine, for now. I was diagnosed with when I was only 31, back in 2004. I underwent the first of 4 surgeries to correct the problematic disks in C5-6 in 2004 which failed, then had surgery #2 in 2005. In 2006 I had surgery #3 where the surgeon installed a PEEK device at C5-6. By this time I also had collapsed vertebrae in my spine so the surgeon installed 2 rods for support in surgery #4 in the back of my neck.
   Before my surgeries I was a very active wife and mother of 2 young boys. I rode horses, I was a volunteer firefighter and E.M.T., I worked as a pre-school teachers aide and lived a very active and fulfilled life. Since my diagnosis and surgeries, my life came to a standstill until I was properly medicated.
   After my 4th surgery I was weaned off all medications the surgeon had placed me on to see if the surgery was a success. It was not. I still suffered from uncontrolled headaches, muscle spasms, neck pain, right side weakness and pain in my shoulder, arm and hand.
   I have tried every modality they have offered to me in hopes I could avoid opioid medications in high doses, as I was only on five 7.5 Norcos per day at the time. I went through 4 nerve oblations, including RF Ablation, in my head and neck while awake, I’ve tried the TENS unit, physical therapy, massage therapy, trigger point injections, facet joint nerve blocks, steroid and cortisone injections, ultrasound, RF treatments, light therapy, biofeedback, meditation, heat, ice, and exercise all with no success. All this time I suffered in silence at home, mostly staying in bed or on the couch where my family could only watch me suffer and could do nothing to help me. The pain I was going through was unbearable and the pain the procedures was causing was just as bad and did nothing to the original pain it was supposed to be relieving.
   Finally I was sent to a private pain clinic in 2015 where I began a regimen of opioid medication and other medications that finally began to give me my quality of life back. I still continue to do meditation, heat therapy, lidocaine patches, antidepressants, Topamax, for nerve pain, and occasionally go to a massage therapist, but find that it only helps me for a few hours and is not very cost efficient nor pain effective, I still do strengthening exercises for my neck and body as well. As time progressed my pain increased as did my prescriptions. I also went through the standard changing of the opioid medications to see if one would be more effective than another with great success and a great quality of life. I was up and out of bed everyday, took care of my kids. I was active in their schools. I was active with my husband and could go shopping and on vacations. I was able to volunteer with an animal rescue group. I could drive without pain. I could cook and clean again! Things many people take for granted, I was happy I could do again!
   Then, the CDC guidelines came out and my world began to crumble in the winter of 2018 when the pain clinic I was going to decided to start to forcibly taper all of their patients down, regardless of how stable they were. I was a completely compliant patient that had submitted to and passed urine screenings whenever asked. I have no history of abuse nor have I ever “run out early” or had a problem with any of my prescriptions! They are treating all of their patients with a “one size fits all” mentality and are now abandoning the Hippocratic oath they took when they became doctors to “first, do no harm”! My medications have been cut by 1/3 now and I’m in agony!! I no longer can do what I was doing just 2 months ago and am also dealing with withdrawal symptoms now on top of my pain. I can no longer drive for long distances without excruciating pain in my neck and right shoulder and arm. Cooking and cleaning are painful again. Spending time using my right arm is nearly impossible. It has taken me almost 3 hours just to type this because of the pain it has caused in my right arm and the headaches I’m suffering from now due to the medication decreases. To say my quality of life has taken a turn for the worst would be an understatement and I now live with a constant pain level of a 7 or higher on some days. I had been at a 5, which was my goal, before I was forcibly tapered.
   I blame the CDC and the my doctors that have blatantly misread and misinterpreted the guidelines. I’m frustrated that I was doing so well and now that this has happened what will my future look like? There is no cure for DDD, I will only get worse and will need more surgeries. Only 90MMEs will never control my pain for the rest of my life.
   My hope lies in the Don’t Punish Pain Organization and other groups like it. Hopefully change will come soon enough for those CPPs that are about to give up and take their own lives. I, thank God, am not there. We must be heard. There must be change and it can’t come soon enough for chronic pain patients. The CDC guidelines must be rewritten so it is understood that the 90MMEs were not meant for stable, long term use patients that are under the care of pain management doctors. Doctors must be allowed to get back to following the oath they took to “first, do no harm”. It must be understood that there is no “one size” or “one doseage regimen” that fits all patients. We are all individuals, with individual bodies and injuries/disease. We have undergone different surgeries and therapies that may have caused new injuries or unwanted side effects like scar tissue that causes even more pain in an already pain-riddled body. We are not criminals or junkies. We do not want to be on these medications, we have to be to have any quality of life, to do the what the average person finds mundane we find it liberating. We want to be able to go for walks with our children and spend quality time with our spouses, not be stuck in bed or a wheelchair.
   My sincere thanks to whomever for taking the time to read my story and my plea.

5. I am an eighty-three-year-old man who has been on pain meds now for18 years. My pain history includes the following: Due to an accident, two back surgeries consisting of numerious procedures to correct the problem. I have two 18″ Titanium rods in my back that are a source of continuous pain. Also, both hip bones have been harvested for material to fuse certain parts which also contribute to my excessive pain. Also, shoulder surgery that never took properly from the same accident; A broken neck which resulted in three surgical procedures to attempt to correct. The neck is fused and stiff and continues to be a source of pain. – While in the recovery of knee surgery I contracted Sepsis and very nearly died. After a month in the hospital, I found that I could no longer walk or use my arms properly. I will be in this condition for the remainder of my life. The doctors tried many pain drugs and finally came to a solution that provided me with pain relief and a chance to live out my life some-what happy and doing things that I enjoyed doing.
   Then came the news that some jerk, who has never seen me, sitting in some plush office that figures he knows better than my doctors, what forms of pain treatment I should have. Now, after I have had my pain relief meds cut way back, I have to tell you that I am in much more pain and have very little interest in life at all. I spend most of my time in bed waiting to die and trying to find some way I can get past the increased pain. Furthermore, I have no medical professional treating my condition any longer. All they do at that office now is continue making sure they comply with all the government regulations that have been imposed on them. Not any interest in my needs any longer. It disturbs me that government even has the power to infringe into peoples lives like this. What is next? I wish they could know what they have done to this old man who wanted to live out the last few years of my life happy. Now I must have to cry for my poor 86 year old sister who is going through the same thing I am. She hurts continuously since her meds have been cut. I pray that God will help my dear sister. Perhaps the government will allow Him to do do that.

   Thank you guys for attempting to help in this vial, immoral act.

6. I never thought pain could ever be so horrible and the worse component of it is my beloved family who would normally protect me from being hurt cannot see when I’m in a horrific flare up, which often feels like a hot poker is going through my chest into my thoracic spine where much degenerative damage has been done and continues to gain strength with age. I am 40. My spinal injuries began from being anorexic and bulimic starting age 12, I over exercised daily for hours. My blood sugar dropped and caused a hard fall first. Landing induced a seizure I’d be tightened up so badly and bones/spine weakened from malnourishment, it created a couple of thoracic compressed fractures. Thus it was so painful I couldn’t breath. I was hospitalized and wore a back brace. Upon the return home I got back to usual schedule of starving, hours of exercise, weight fluctuated, but the spinal pain grew with the years. I ran frequently and extensively causing more premature malformations of my young still growing spine specifically. I was only 12 when it began when I attempted to eat, I’d become overwhelmed with fear of weight gain and induce forceful vomiting. With each fall,run,lifting of weights over my body weight, 200 stomach crunches 5 times a day, little did I know then it was causing the most painful conditions for my spine to try to thrive from. I didn’t feel the pain it’d eventually unfold to and even my left knee was seen by a Ortheopedic surgeon at 17. He explained I was losing far too much cartilage (malnourishment) and the fire eful running also tennis, I was given injections and prescribed medications to help with the pain and anxiety. They helped I’ve had to wait until I am “old enough” to get the surgery that I need full knee replacement. I’d also drink alcohol at times with friends or a boyfriend and I said I was trying to kill my pain but I so desperately did not want to be dependent on pain medication. So I tried all things naturally healthy and supplements. Eventually the pain became too bad in thoracic spine to esophagus,they thought I had gerd, we later discovered I have a hernia.seceral ulcers but the intense pain is from a disease called Barrett’s esophagus. Also my GI dr said that my esophagus has a hypersensitivity. Through decades I’ve have periods of controlled food consumption as anxiety meds prevented the panic. It’d always come back though. It was my only feeling of control as my family was not connected by healthy communication. I saw drs. And specialists about my spine but other than compression fractures they couldn’t understand how or why it hurt so I’d never get true treatment. Eventually to make my life functional I was told about methadone clinic near by. I’d never used or abused any type of illicit drug and had only been prescribed a small pain killer for few years,and anxiety controlled medications that did and does help greatly. Do to my family knowing I was suffering but needed to have a way to control my pain,I eventually got on methadone. It did help stop feeling the increasing pain but was too strong and I often would run longer or lift weights longer or heavier increasing the I juriesbut I didn’t feel it because that medication was too strong. We just didn’t know it at the time and didn’t have a real physician that understood how painful my condition was. After years of being on methadone, working out for hours often starving stil or purging but taking many natural supplements. I got myself off of the methadone when I researched it could worsen bone density issues as I got older I did have osteoporosis and osteoarthritis forming in spine and arms hips. This was agitated by the years of hard intense running and exercising. However I began to feel the new injuries after I got off of the methadone. I sought out a good understanding physician but had no luck and thus tried to use natural methods to handle the pain. I also did begin to eat sometimes mostly healthy smoothies w supplements because of esophagus, smoothies were easier. Yhroughny 30s more evidence was found of my co diction. My pain in the knee and my esophageal pain and thoracic spinal pain was so intense it’s been difficult to sit long,travel,wear any size heal, carry tho ha,running had to stop,. Also the purging began to be co trolled ask was in the anxiety medication that prevented the panic and feeling of having to purge to feel in control. I was involved INA car accident where my car was struck and totally by a van worsening my spinal condition and pain. After more hospitalizations we found I also had chronic pain syndrome, scoliosis from the multiple thoracic/cervical fractures and bulging discs also osteoporosis. Kyphosis was found the bending in of the upper spine (which often I wonder if it’s contributing more to the intense esophagus pain it feels like someone twisting my esophagus like a wet rag. The shouting pain in my knee feels like a thick knife being shoved under my knee cap even when I am still,like right now. There have been many findings with my spinal co fituon abd at 40, many days are spent inextra loneliness and isolation due to this pain even with the pain medication that has allowed me to live and to think and fubctuonon amoebas levek regardless of pain so intense it feels like it will overcome me. It is terrifying and only getting more difficult to live with. I am treated by my physician/neurologist however no counselor and I cannot work but o want to live so badly ivenot founds way to. My family and friends do not u sweat and how horrible this painterly is I try to live to fight another day. However I don’t know where to start. I only take those two medications and have to sit in isolation often. I do want to use my story to help others and to all I cantogekp represent this misunderstood disease. No one sees we are being hit by a bat as hard as someone can hit . It is invisible and that in itself is very frightful and difficult bid studies hatd in college to become a counselor however not being able to sit long and move in certain ways many things has deemed me disabled due to these injuries. I am waiting on disability but everyday I do not notice my own life. I am isolated now due to these invisible battles with horrible pain. In averagyny medication helps me to have quality of life, however, it’s irecebted marriage and career and depression has been present lately. Many evenfamiky do not understand and even pass judgement. I pray we all find our support and purposes as well as care that truly increases yality of life also try very hard to find the reasons to laugh daily rather than give into sadness doubt or loneliness God bless,

   Hanging on, Amanda K. O’Neal.

7. While visiting a friend in San Antonio, l was assaulted by 2 illegal immigrants who were trying to steal my purse. The attack occurred in 2011 and at the time, l was a physically active 42 year old wife, mother & RN who enjoyed new experiences. Everything changed after that day. According to the ER doctor, my neck & spine CT scan was fine. I assumed the awful pain would improve over time. l had multiple chiropractic adjustments, massages, etc… but things only got worse. I had an excellent family practice doctor who prescribed pain meds for me, and it was he who discovered that my initial CT was misread by the emergency department. He was my PCP for 20 years, through 2 bouts of kidney stones & labor pains that l reported as “feeling like gas”. He KNEW that l had a high pain tolerance. He realized that something was very wrong if l was crying so hard from pain that he needed to give an injection in his office. When l was finally seen by specialists, they wanted to do surgery. But since l began to improve with acupuncture, meds, PT & various other non-invasive treatments, l decided not to have surgery. This choice was not well received by the orthopaedic surgeons & they felt that my PCP shouldn’t be prescribing opiods to me. (I was weaning down on them as tolerated).
   When l first moved to SC in late 2012, l could not find a PCP who would accept me because of the pain meds l was on. I flew back once & obtained 3 months supply from the hospital employee pharmacy (this was permitted at the time). My doctor & l continued to communicate regarding weaning, which l was able to do pretty quickly. I no longer needed the Fentanyl patch, but required a pretty high dose of Dilaudid.
   I was diagnosed with aggressive breast cancer in January 2013. I was 42 with no family history, so l opted for bilateral mastectomies with chemo and a year of Herceptin. Through the hospital system & cancer center, l found a wonderful new PCP who worked well with my oncologist & surgeon. My surgeon got me into their PM program as well. That’s when the nightmare began…….
   The PM was very cold. Despite the severity of my spine & neck pain, all she wanted to do was WEAN, WEAN, WEAN. I signed the PM contract with her which cleary states that she is the ONLY doctor allowed to write pain meds for me. I saw her shortly before my cancer surgery, central line placement & first round of chemo. I was stunned & began to cry when she tried to wean my meds again. I begged her not to reduce my meds because of the painful surgery l had coming up. Her reply “I’m treating you for back pain, not cancer pain.” I felt like shouting to her that my parts are CONNECTED. I am a person, not one single body system. There comes a time when we can’t be weaned any lower. Degenerative & bulging disc disease get progressively worse & most people end up needing higher doses of medication.
   This doctor has a reputation for being unreasonable. As a matter of fact, my new PM physician has taken on quite a few of her patients. I’m grateful to have him, and he never treats me like a drug seeker. I follow the rules, don’t take illicit drugs & plan to avoid surgery for as long as l can. If l didn’t have a compassionate PM doctor who does his very best to treat pain appropriately, my quality of life would be gone.

8. Here’s my story, short-version:
   I first started having chronic pain when I was 4 months pregnant with my son back in 2007. I toughed it out at first but I ended up seeing my PCP and rheumatologist & getting some treatment for RA & fibromyalgia.
   Then in 2009-2010, things got REALLY bad: it was eventually discovered that I had a 9-inch long benign hemangioma tumor going from the spinous process of T4 to my left shoulder blade, which was unbearably painful, but only one neurosurgeon believed me and did a T4 laminectomy & tumor resection. He said this tumor ended up eating away part of this protective coating around my spinal cord and that I would always be in pain from it. Well, the surgery was a success because it took care of most of the pain.
   Anyway, fast-forward to today:
   I’ve got another aggressive vertebral hemangioma at T10, but once again, no doctor will believe that I’m one of the rare 1% of patients with symptomatic vertebral hemangiomas!
   I’ve been red-flagged, black-listed, called many different names (besides the usual “drug-seeker” & addict). I’ve been screamed at by ER nurses (among other verbal abuse), verbally and even physically abused by EMTs (can’t prove it, so they’ve told me…), etc.
   Today I’ve got an OK pain doctor, but he’s “injection & procedure happy” and has expressed fear of going to jail and such to me in the past. He’s reduced my meds to the point they barely touch the pain. 2 of my former pain doctors left pain management out of fear of DEA persecution and I don’t blame them.
   Like I’ve said before, I could write a book! This is just a basic outline of my story. If it weren’t for Kratom, I would already be dead because the constant pain I would feel without it just isn’t compatible with life!

9. Please advise me
   I have been struggling to find care to keep my life livable without spending the majority of my waking hours in pain. I have degenerative disc disease, a damaged bulging neck disc, inoperable seperated and calcified damaged bone in my right heel, torn left knee cartilage lymphodema, nerve damage drop foot and limited control all down the right dominate side of my body. I have discoloration and swelling in my limbs and venous stasis.I was in a wreck that caused many of these injuries . The wreck also caused injury to my colon leading to a large segment of it being removed. The surgeon after having to remove more than expected wrapped a portion of my colon around my ovary, binding nerves in the bundle. I now have a cyst on that ovary where the wrapping was done. I have been told if they put me to sleep to remove the cyst the likelihood of waking me is questionable at best and might not alleviate the pain.
   … I began having pains so bad when trying to walk they caused repeated falls. In Nov 2016 a fall caused a complete tear in my right shoulder . I was operated on to put my shoulder back . There were few choices for sedation due to adverse reactions. The operation was not successful and efforts to rehabilitate my arm have been painful and unsuccessful.
   During my recovery time I was given minimal doses of pain medication never quite relieving my pain. I developed a frozen shoulder almost immediately after my operation requiring another procedure which was unsuccessful. I have had several rounds of physical therapy with minimal to no improvement in function .Now I am having motor control issues from the effects of the sedation including swallowing and speech issues along with the difficulty walking . I have sought a neurologist who can diagnose the particular neeve damagei involved but I have yet to find anyone who will take my case. In the meantime my only source of relief, even while on palliative care , is minimal pain medications, liquid vitamin and fiber filled smoothies to try and prevent blockage. This has been a precarious balance. I am not very ambulatory at this point . I have developed venous stasis in my legs that I have to use inflated boots to pump the blood that pools due to the circulation being cut off . I am in constant pain that cause more immobility and often tears. I feel I am meeting more problems in seeking treatment than real help.
   Please help me ! I want to function higher and get my life back at least in part. I feel I have much more to contribute and am pleading for the chance to do so !

10. I am so angry about this! I have a prescription for hydrocodone for my chronic back pain – degenerative disc disease, scoliosis and arthritis. I only take it as needed and have done everything possible to heal myself – I eat well, stay slim, exercise and have lots of family and friends who provide love and support. I’m really healthy otherwise.

    But most of the pharmacies in my community have stopped carrying opioids because of the crackdown. They say it is just too much paperwork. The one pharmacy I found that carries it makes me jump through so many hoops to get my prescription filled, they make me feel like a lowlife. They actually smirk at me! And I am a well known upstanding respected member of my community. Can you imagine how they treat others not so well known?

    My doctor gives me the prescription after making sure its not hurting me – all my lab test results are excellent. I never allow myself to take much, only as needed. As I’m not ever going to recover this situation really infuriates me. I don’t know what to do. I live on a tropical island and can’t drive to another state and can’t order it online.