Share Your Pain Story

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.

999 Replies to “Share Your Pain Story”

  1. I’m not going to beg for my medication. I’m not going try to justify myself with some long winded sob story about my disease and why pain medication is helpful. I’m not going to explain that somehow, apparently miraculously, I’ve taken these drugs for years, on a schedule, by the book, with no problem.

    Who woulda thought? How am I not a raving drug addict? I don’t know? I must have magical powers I guess.

    (Here’s a secret: My magical powers are called maturity and wisdom and logic and self preservation. Yep, that’s all it takes for you not to become a drug addict while taking opiates…)

    I manage to work, take care of my family and my home. That’s all I want to be able to do.

    But I’m not going to plead, or grovel or whine. Our country has decided it is no longer in the business of treating pain. Period.

    Fine. Then, let me beat you to the punch. I don’t need it. I’m coming off all of it. No one is going to control me. I control me.

    So, I will either survive or I wont. Either is fine. Honestly.

    If there comes a time when I can not take care of my responsibilities any more, and I am a burden more than a blessing. I will be ready, and my family can be ready to live without me.

    Wake up people, they are culling the herd, and we are the stragglers. Get with it or start packing.

    Or how about this? How about a national hunger strike??

  2. I have lived in chronic for the last 23 years. My doctor would prescribe meds that I would take responsibily over the years along with cortisone injections, I’ve been able to hold down full time employment along with caring for my parents and myself.
    In the last year, the cortisone injects failed to work which has made my life impossible. I am retired, my parents have passed. I am in an insane amount of pain. My orthopedic doctor said the damage is to bad to operate . Then he discharged me from his care, and told me to see a pain management doctor. I felt like a dead bug just thrown out of the door.
    When I got home, I called the pain management doctor that was recommended. I have to wait 3 weeks to go there. No pain meds, nothing. I honestly don’t know if I can make it three weeks. Thinking about suicide. Thinking about going into a city to find drugs. Thinking about moving to a suicide assisted state. I have no quality of life if I can’t get some relief. Don’t know what to do. I’m not addicted to opioids, can’t remember the last time I took one, but if and when the pain gets so bad, I need to know I can take one.

  3. My pain is killing me, so I feel like I’m already dead. Now my Dr. says I have to stop taking my opiod pain meds, which cost me about $35.00 a month and start on a different opioid that cost me $455.00 a month. Really, these rich politicians who get special interest money from pharmaceutical companies are simply voting for thier own interest. Do they really think ,WE THE PEOPLE, will do nothing while they spit on our graves. Well I know of some who have some pretty drastic, although perfectly sane and legal, options that will get the attention, of the entire world. These people are going to change the lives of every politician in this and every country, by bringing them down to our level, to truly know what chronic pain feels like. Wait and watch.

  4. My husband was diagnosed with the most painful type of lung cancer and his doctors refused him pain meds. It took 10 days of fighting until they finally let him have them but not with throwing insults our way. My husband is a retired officer, not your classic druggy. They had the nerve to say it was not their policy to dispense addictive drugs. So i said oh i guess its your policy to deny pain medicine to cancer patients, how dare you. I was ready to sue them. That’s what they need, lots of lawsuits to get them in line.

  5. I hurt my back in 1999 at work. Was awarded a settlement that paid for doc. visits and pain management including pain pills to alleviate pain. Since then I have had 2 surgeries that left me with constant pain across my lower back and numbness in my calf and foot on r. side which feels like I have a tennis ball in my shoe. Over the years my doctors raised my dosage until they believed it to be a therapeutic level. While at that level I was able to control the pain and work a 40hr. work week and overtime every other weekend sometime both Sat. and Sun. My job at the time involved being on my feet 8-10 hrs. a day. My job routinely involved set-up and operate mills, lathes and other heavy machinery. As a prototype tool and die maker I was able to concentrate constantly holding tolerances of .00005 of an inch when I needed to. At the time my dosage was at a level that the “independent doctors” that are paid to say what the insurance carrier deems, would make it impossible to walk. I can only consider it a Godsend that I no longer have to do anything like that now as I am not able to do much of anything. Due to my mind being constantly consumed with the fact that my pain and discomfort being all encompassing. Though I have no control over what others do with their medications. I, and others in my situation are being penalized and made to suffer. Due to the across the board reduction in pain meds to a non therapeutic level while the people who have the ability to change things and give the control back to the doctors, refuse to do so.

  6. In 2006 at the age of 35 i was diagnosed with an aggressive form of rheumatoid arthritis.I had my first total knee replacement’s and 5 years later I had to have the other knee replaced. My pain is real and since our government decided the medications I had been prescribed were not good for me they have decreased my dosages by so much that I can only lay in my bed day in and day out. I am only living until I can die. I no longer have any pleasures in my life. I have so much pain with any attempt of physical activity. I am only 50,how much longer.

  7. I’ve been on methadone 30mg a day for chronic pain for years,2months ago I seen the doctor and he said it was 90mme,then today I seen one of the various nurses,(one Ive never seen)and she tried to tell me 20mg methadone is 90mg morphine when I know better I even asked about what the doc said 2 months prior and she just wouldn’t listen and I didn’t want to argue and just took it even though it’s wrong.Pain clinics shouldn’t be able to lie and cut my meds by one third but what can you do.

  8. I have Multiple Endocrine Neoplasia type 1 (MEN1) I endured 25+ surgeries. We lost count several years ago. My disease causes tumors to grow within my endocrine system. I have a brain tumor. Adrenal tumors, extremely high calcium and PTH levels, I’ve had most of my pancreas removed as well as my spleen. Thyroid, Multiple skin tumors, parathyroids, my whole reproductive system, part of my stomach, parts of intestines, the list is enormous. I have pancreatitis pain which is listed as one of the most excruciating painful things you can have. I get kidney stones, I have primiformis syndrome, TMJ, spasmodic muscles, bone pain, jaw and ear pain, anxiety, depression, sleep disorders, daily severe nausea, headaches, osteoporosis, diabetes type 3C, chronic bowel obstructions. Basically the pain list
    goes forever. I am considered a “Drug seeker” at our local Emergency Room. Some days I can’t even get out of bed. I thought life was getting better and I was starting to enjoy being with my family and able to cook dinner ever so often because I took a opioid in the morning and at night. Now they have pulled the rug out from under “Us…..the people that pain relievers were meant to help”! I have had this disease my whole life. I was able to have a career until I was 36 and it just became impossible to work. I have been on disability since then. Now I find life hard to take. I can’t go to the hospital for relief, I can’t go to the ER… that’s humiliating, I can’t take pain relievers. I’m just miserable. I have never been an addict. If I was feeling good I didn’t take anything. I wasn’t looking for a high….I am way past that. I only want to do some laundry, maybe make some dinner once in awhile and enjoy my family. Now we are selling our house in Oklahoma to
    Live in Alabama where the laws are not so strict. We just want to live a normal life until this kills us which now it looks like this will come sooner than I thought

  9. I am a 62-yr-old wife, mother, and grandmother. I am not an addict. I have never had any addiction issues. I’ve been a fully compliant chronic pain patient for well over a decade. My medical record is spotless, as I have never once abused my prescription pain medications. I’ve followed all the rules and everything that’s been asked of me, even more. I’ve signed pain management contracts. I’ve kept my medications locked in a safe that’s bolted to a shelf. I’ve never lost a single pill nor asked for an increase in dosage and I’ve never failed a drug test.

    Prior to 2005, I was also a busy computer professional. Right after Christmas in 2004, I was diagnosed with bilateral Neurogenic Thoracic Outlet Syndrome (NTOS). NTOS is a painful and disabling repetitive strain injury that causes chronic muscle spasms in the neck and shoulders. These spasms pinch nerves and arterial flow in the brachial plexus area under the collarbone. The higher my hands go above lap level, the worse the pain gets until my hands actually go numb and I lose pulse. I was judged not to be a good candidate for surgical intervention. In order to try and plateau the progression of my condition, my doctor advised early retirement and I was forced onto SSD. I was devastated by the loss of the career that I worked so hard to build.

    Pain management helped me to some degree, but the restrictions I faced due to my disability were daunting and my morale declined. Although I was not psychologically addicted to these medications, the body grows physically dependent and any delay in getting a prescription filled in a timely manner can cause debilitating withdrawal symptoms to set in within hours of a missed dose. This dependence is just one of many significant side effects that chronic pain patients face. As the opioid crisis escalated, delays started becoming the norm, not the exception. Physically disabled patients have enough problems to deal with on a daily basis, getting legitimate prescriptions filled in a timely manner should never be one of them.

    Although I was stable at the same dose for years, the frequent trouble I experienced in getting my prescriptions filled in a timely manner became intolerable and caused unbelievable anxiety. It was during one of these delays that I was told about kratom, so I began researching it and decided to give it a try. I was shocked to find that kratom significantly reduced the withdrawal symptoms I experienced. In fact, it worked so very well that I eventually decided to discontinue the extended release morphine I’d come to rely on for over 10 years just to see how I did without it. Did my pain level increase? Of course it did. But I was very optimistic that there might be a better way to manage it. It took a little bit of trial and error, but eventually I found out what works for me and that was a game changer!

    You see, what I did not fully appreciate is the just how much the pain medications sapped my energy and motivation. I was astonished at how I’d gotten use to what I now consider an unacceptable level of malaise as I paced my daily activity level in order to avoid flare ups. I found that kratom allows me to function on a whole new level without any impairment or the troublesome side effects and tolerance issues of opioids. I’ve also been able to reduce the amount of muscle relaxers and antispasmodic medications that I need as well. This natural alternative has the added benefit of boosting energy and mood, which is really important for those of us facing chronic illness. Even when well-managed, daily chronic pain is depressing and exhausting.

    My husband is also a chronic pain patient from a failed back surgery and is oxygen dependent due to end stage COPD, so he’s not as active as he used to be. For months his pain clinic encouraged his use of hemp derived CBD and it helped some. Now all of a sudden his clinic says no more CBD. Makes no sense when it’s a better choice for him given his breathing limitations? My mother is 92-yrs-old and is still very independent at her age, thankfully. But as an only child, responsibility for her care falls on my shoulders as well. I need to be able to be active and alert in order to help them when they need me. Kratom helps support an overall sense of calm and well being which allows me to manage my daily chronic pain and care for my family with focus and stamina.

    We accept that we’ll never be entirely pain free and that is ok. We are just trying to stay productive and as active as possible. If there is to be any hope in solving the opioid crisis, alternatives like kratom and CBD need to be fully explored, not scheduled out of reach. I just pray the government doesn’t keep taking choices away from us. Chronic pain patients need more options, not fewer ones. It’s not right or fair to chronic pain patients.

  10. “Writhing” is a verb I’d never thought about much. As a nurse of almost ten years, I’d treated plenty of pain but managed to stay blissfully unaware to its true violence against the human body. And I will admit there were times when I would secretly roll my eyes at that frequent flyer in my ER with a “nebulous” diagnosis like “Fibromialgia”. Then I woke up on July 7th 2009 and my life changed forever. Day and night, night and day I took to my bed and became intimately acquainted with the action of writhing. After 3 days, my body finally lapsed into some state of unconsciousness not unlike sleep. And, even in my dreams my body made me completely aware of my pain. Nightmares – vivid and horrific of my being run over by a train. Frantically dragging my body and placing my stumps ( legs) into a small wagon while I scream for an ambulance and help that never comes.
    My current nightmare is that the political rhetoric will overtake critical thinking and will remove the only barrier to my anguish- responsibly prescribed pain medicine. I work full time again, I’m successfully raising two teens and have a full life. Only because my symptoms are managed. Without that- I have no choice but to let the pain wash over me and allow the writhing to begin.

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