Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. I am an 83 year old male that has suffered chronic pain for over 15 years. Recently I moved from rural Colorado to Metro Denver and have been forced by this move to find a new doctor. The first doctor i visited refused me as a patient because of the number a oxycodone pills I was using as prescribed by my doctor in Wray CO. The second doctor I visited took me as a patient but reduced the number of pain medication he would prescribe.
   I documented to the doctor the treatments I have endured in the past to try and reduce my pain. He explained that he could not increase the dosage out of fear of losing his license to practice not that it was the proper dosage. I have had three back surgeries, tried every recommended treatment and have gone cold turkey to try suboxon. If there is anything I can do to help this cause please contact me. Jack O. Olofson – jackolofson52@gmail.com

2. Thank goodness! Something in the news that might help our quality of life instead of making us suffer. By suffer I mean embarrassment, shame, discrimination even being verbally attacked and reprimanded and given their opinion by ignorant strangers to increasing my pain so badly that I am now bedridden 6 out of 7 days instead of 1 or 2 out of 7 before last years AZ law changes. I have one wish, that I could give everyone that reports the continuing scare hype about opioids and everyone that votes to make getting needed medicine harder or impossible to get, just one week of the pain that I am living with since 1998. After they spent that week in bed in tears from pain while trying to get the energy and positive self esteem to fight for the medicine they need and not get depressed from the negative comments and continuous obstacles insurance, doctors and the law puts in their way. I am positive this problem would be over. They would help us to get access to the medicine we need for just a little relief. People would show empathy for their fellow man and help to comfort them. I often wish I could trade this awful pain disease for something everyone could see, like double amputee. Then I wouldn’t have to convince someone that although I look OK I am in fact very disabled with severe nerve damage from more than 25 years of diabetes. The situation is so bad that their are many of us that continuously try to convince ourselves not to give up this life of pain and battle for our medicine and embarrassment of being looked at as some kind of addict. WHICH I AM NOT! I am dependent because I have been taking opioids for 21 years. I choose to be dependent because the choice between being in bed all day long in tears because of pain or being dependent on opioids that allow me to have some quality of life to move about, dress, bath, cook, live, love and even think without the constant distraction of pain is an easy choice. I choose medicine and relief. This past year my doctor reduced the prescription I have been taking for 10 years to about a third of my successful treatment levels because she told me she is scared. This is just wrong. I hope there are not too many suicides before the pendulum swings back the other way and something else makes the news. Believe me, someone who has taken opioid medicine for 21 years without an overdose ends up dying from taking too many pills didn’t do it by accident! So please don’t list it as an overdose and bill it as a national health epidemic. Instead list it as a suicide directly attributable to the sorry state of pain control and list it as a national health crisis of making people suffer more than they can handle and get pain relief to patients that need it.

3. Hello pain sufferers.

   I have done a bit of research- Heroine is called that word because of the …Hero… feeling one gets, or some get and act as if a hero. Therefore, I respectfully suggest everyone try hard to not sound like you are trying to be a hero- be as clinical, brief, factual and cite objective, firsthand, evidence because professionals apparently look for the phrasing and attitudes that go along with (actually!) being a hero, a survivor, and dismiss what you say. Try not to just take a opioid pill before you meet- it almost ensures this appearance.

   As America has increasing breakdown, the pros are becoming ever more willing and able and pushed to treat us like cows rather than the leaders of the world (Americans) so they quietly create an upper class of people- I call them the Medical Industrial Complex- where what you need, say, report, reveal, request, is to be dismissed and you are instead pigeonholed into a convenient stereotype.

   Pain relief is attractive. This does not mean you are addicted. “Addicted” is just a word- you abuse the drug or you do not. In your heart, and experience, you KNOW when you take it to feel good rather than merely obtain relief.

   When you become weak (decondition) and less active, you become sad, or cope quietly- so they drug you with antidepressants rather than pain relieving pills. If you are too pushy, they say you are anxious and prescribe what I call …quieting drugs… that actually do not help you cope, but help you go away due to the discomfort the pills cause. This happened to me over decades- AFTER the pros determined (taking years and years) the doctors did harm my spinal cord with a faulty, toxic, injection.

   When one has to keep secrets from the staff or they get angry and unhelpful, they offer more harmful treatments (my spinal cord is inoperable as they say repeatedly, then forget, offer exploratory surgery which creates even more scar tissue) and so those of us able to use opioids at low dose, responsibly, are inconvenient, are played, deterred, deflected, set aside, and in my case, after getting pushy, downright harassed. Currently, I can list well over 12 examples of how the doctor and staff demonstrate utter incapability (Your kidneys are not there, Sir) in order to make me go away. I cannot go away, there is only one V.A., a small clinic, and have to sell home first- a big task for me.

   I encourage all of you to
   a) Get a paper notebook that pages do not fall out of (non perforated) and keep logs of phone interactions, appointments, contacts, and

   b) a second notebook you can write what your pain was like each day, giving both the same ordinary pain but also anything novel- if you are up for it, write what you think caused the novel pain.

   c) Notice the message you have to hear when you call “this call may be recorded for quality purposes?” I suggest you start recording the calls to doctors and similar if you are the type it is easily accomplished- it is very rewarding to shove their lying words back in their faces, and if not V.A., you may win easier without going to court in a lawsuit with that recording and those notebooks.

   Letters from family, friends, who witness your pain limiting your life can also be very persuasive, also, if you are in good standing with the doctor, ask for a summary of the medical situation, the treatment plan, and if there is anything other than palliative treatment for your condition available.

   Years from now, when many of us can sue for millions (I cannot- V.A. wont allow it) you will have records just when they defensively “lose” your electronic records. I did this and saved the day from 1981 forward. I’d be a half million dollars behind had I not done this on advice from parents- but treated like a fool, a paranoid, all the way through until I won total disability compensation. Fight and take the long view.

   Best wishes, sad days for America, caught in a political game, where hatred for POTUS compels the Left (often in govt and public servant jobs) to make an example of YOU to show how our current POTUS is bad- like children told to put down a delicate china plate on the table and the child throws the plate onto the table, breaking it. I believe it is THAT bad, so prepare your heart, mind, for a nasty, lifelong, fight, and if you get really down, remember, the best revenge is surviving, thriving, and fighting them with a smile, records, rationality, and composure. Anything else just gives them ammo to brand you as a druggie to deflect from their careless or lazy or inept or reflexively negligent ways. After 35 years plus, I know this like most know their parents face.

   Good Luck

4. I’ll make mine short. I fell from a utility pole. C1 and 2 disks are still sitting on my spinal cord 3 to 6 are fused. My lower back is not in good shape. I’m lucky after 20 years I m doing better. I still need something to get me through the bad days. Doctors have told me to use over the counter pain meds. They don’t work. If they would look at my Usage they can see I don’t abuse my pills. I recently cut a piece of my thumb off with a hatchet splitting wood for the fireplace emergency room gave me nothing for pain when I was there. they finally prescribed tramadol which does not work for me. Thank God my family practitioner Stepped up and gave me something. All I needed was pian management for two days. I called every political person I could to tell them this has to stop. I’m not a drug abuser

5. I too am a chronic pain victim in this spider web of ridiculous laws. I was diagnosed in my 30s with degenerative disc disease and migraines and fibromyalgia in my 40s . During this period of time I was prescribed pain medicine and always took lowest effective dose. With this I was able to keep working. I even tried sleeping without the medication so I wouldn’t get so dependent on it. I then developed sciatica pain from a car accident (not my fault) and pulmonary embolism and dvt. I still continued taking the same dosage but took occasionally at night so I could sleep. When these laws took over I was also abruptly discontinued my pain medicine. I became even more disabled and gained weight due to my increase of pain. I can no longer do things like work, exercise and just live a normal life because of my pain. I have never smoked or used alcohol in my life and now I do not seek illegal pain meds since being without my measly pain prescription. I just suffer in silence and anger everyday trying to take Tylenol to ease the tiniest amount of pain away. I hate how the doctors,pa and everyone in medical field look at you like you’re a three headed drug seeking monster when you even mention pain medicine! It makes me want to scream ! My pain does make me scream and cry in frustration! Why are we being punished for other people’s addictions? I can not understand this at all . I just turned 60 and I’d really like to be able to have a little bit of a life where I can move, exercise and take care of myself!

6. I’m a 55 yr old woman who’s been in chronic pain for over 30 years due to a fall off of a pony onto my lower spine and w/old age the pain gets worse in both legs and back side areas. This year I was denied my medications due to the rule changes congress has passed. I was out of luck w/no medications due to my insurance company who denied my Dr.s request for my meds. I fought w/my Dr’s office only to find out two weeks later this issue was with my insurance company who kept denying my prescription. After calling them daily for 4 weeks I finally got my prescription and I can’t believe due to the drug problem in America the People who are in pain have to suffer without their medications due to the rule changes. Something has to be done so the people who need their meds can get their medications.

7. I graduated from college as a Webmaster in the Internet making websites. What a joy. I loved my job so much that I would have done it for free! Being paid $75K a year and playing on the internet? I was in heaven and loved every day I worked then in 2003 my trouble started. I herniated a disc in my lower back, went for a surgery consult and he gave me odds at coming out of it paralyzed. So I stuck with the pain medicine. I was given opioids which had to be increased until the pain went away which it did and I was then able to live a somewhat normal life and keep working. Then another herniated disc and another. I was told I have Degenerative Disc Disease. I went for another surgery consult and was again denied. I cried. I did not want to stop working. How many people can say that? I knew then that my working life was over. I did not want to be on opioids so I have tried everything else. You name the treatment and I’ve done it; nerve block, epidural, radio-frequency ablation, steroid injections, etc. You name a none addictive drug, Lyrica, Ibuprofen, Naproxen and I’ve taken it. I tried everything to stop being on opioids; PT, exercise, TENS unit and every contraption sold on the Internet and I have either tried it, taken it or bought it to stop being in pain.
   The ONE thing and ONLY thing that has ever made my pain level manageable is my pain medicine and now that has been reduced to a level where I am bed ridden thanks to the CDC.
   1st and foremost, I am a proud Vietnam Veteran. It was important to me because my uncle was killed in Vietnam. I worked hard for this country and now this country is not keeping their promise. They told me they would take care of me and they have not kept that promise.
   The ONE thing and ONLY thing that has ever managed my pain is opioids.
   Pain is exhausting so please give me my life back!

8. I am a woman in my mid 30s living in utah. I have been battling severe depression and anxiety since my teens. My family was NEVER able to afford medical treatment or care for physical or mental health. During my adult life my stomach/pelvis has always hurt. Sometimes bending or twisting would cause immediate debilitating pain. Other times I would unexpectedly become nauseous and vomit, on a regular basis. My body pain can only be described as getting beat up, going on a long strenuous hike and at the same time have someobe putting lit matches out inside the layer of my skin. I also have had a chronic headache (it used to only be about 4 days a week) that never goes away, and now about 6 times a month it turns into a pounding migraine.
   In my mid 20’s i experienced a period of about 8 months where i bled and clotted profusely. I could no longer work because of it. The pain was exceptional but I’d always had pelvic pain. I even tried adult diapers but there was just too much blood it could not be contained. I no longer owned any towels, underwear, shorts, sheets or blankets that were not ruined by blood. It was pure misery. That was the beginning of my many laporoscopy surgeries (some unsuccessful and only leaving damaging scarring), forced into menopause in my 20s and injected for 8 months with a drug that has deteriorated my bones and joints and is now linked to my dental problems and other physical issues. I have since been diagnosed with a slurry of things, most uncurable….yet claimed as “treatable” with pain meds, pt, and the drs fave “lifestyle overhaul” aka weight loss-(well i lost over 90lbs and feel worse now than ever before, doc!)
   Diagnosed with endometriosis, adenomyosis, lots of unexplained adhesions, recurrent uterine fibroids, interstitial cystitis, ibs, pcos, ridiculously huge “back mice”, fibromyalgia, knees that need replacing(remember my age), migraines, chronic headache, severe insomnia AND NOW prolapses of my uterus, bladder and rectum after my last endometriosis and adhesion excision surgery almost a year ago. Which my surgeon picked up shop and disappeared to georgia less than 2 weeks after my surgery. There was no aftercare, no advice and no referral. After about 3 months his receptionist snarkily sent me HALF of my surgery report and referred me to a dr that (after 2 months of waiting) refused to see me cause of insurance, then he even refused my self pay. He would not see me at all. My original surgeon is active on an endometriosis facebook group, but refuses to respond to me. I did not have any prolapses before him. There is nothing out there MAKING jaded drs do their jobs, other than an “oath” that with my firsthand experience means nothing to them.
   Now i am stuck in a limbo of hellish pain and uninformed drs who only do what their told by their corps. and their opinionated ego. My mental health gets worse everyday, even though i go to pelvic floor therapy twice a week i experience so much pain it makes ne want to stop persevering. I have over 7 appointments all 5 days this week (one was already completely pointless). I dont know if i will be well enough to attend all my appts. Then they will charge me a no show fee if i dont call them 24 hours in advance caise i am home vomiting, or crying in pain or trying to go to the bathroom.
   My care and treatment has gone downhill the last 3 years. I can not find any dr to help me get better or cope or i simply cant afford self pay.
   I’ve noticed Drs attitudes towards individuals with disabilities has drastically gotten worse, demeaning and even disrespectful. It has leaked from drs to their receptionists who no longer seem capable or willing to help, from setting appts or even answering simple questions.
   I have been exposed to the medical world for years, most of my life. And there is a noticeabe difference in being able to find help and get referrals and recieve reatment just in the last 2 years.
   People who are like me or worse off should be allowed to live. We should be allowed to recieve the treatment we need. We jump through all the hoops, we pull the red tape they use out of our own hair and off our own blistered skin.
   We are not criminals, we need legal medication and real help. We all have the same rights.

9. 1996 I was riding in a auto when a large piece of metal came off a truck , went through my windshield and hit me in the face. I suffered a brain injury, loss of sight in my right eye, and a partially crushed skull. After many surgeries, nerve blocks, RF treatment nothing worked. I was suffering from chronic pain. Before my accident I didn’t even know what that was. I used to get any meds I needed and finally received a combination that allows me to function as normal as I could hope for. I can participate in activity, chores, my children, grandchildren, travel, pretty much anything but within the last year or two between the media, and government I am being told that I have to get off them. I see politicians talking about the crisis but these folks haven’t been injured beyond conventional treatment. They have idea what it feels like to be in pain 24 hrs a day. Opioids saved my life and I’m not going to give them up without a fight. I think a class action suit to let existing pain patients keep what they have and ease regulation on new patients based on the severity of their injuries. I really don’t think we should be punished for other people using and misusing who are not injured.

10. I have been disabled since 2004 and prescribed opiates back then for degenerative disk disease and diabetic neuropathy. Four years ago my foot broke off of my ankle from a fall, and the quboid bone came through the bottom if my foot. It’s been diagnised as Charcot foot. The treatment I was prescribed is a $1900 C.R.O.W. boot (charcot restraint orthotic walker). I have to wear this boot daily until I go to bed. I have an open ulcer on the bottom of my foot that has become infected several times over the last four years. I am now confined to a wheelchair most of the time. Charcot pain along with my back and diabetic neuropathy have left me in chronic pain. Without opioids my quality of life, what little I have left, would be gone and I can only imagine one solution. Suicide. My medical clinic has recently hired a new Doctor named Hannah Fields. She is an overzealous opiate hysteric who specializes in Suboxone Treatment, including hospitalized supervision of the opiate withdrawel physical and mental hell, inpatient drug abuse treatment centers and as many as three weekly support group meetings. As a 67yr old man on limited social security income, travel limitations and other factors, this type of treatment program is unreachable for me. I am now being completely taken of all my pain medication and will begin withdrawel within a few days. I plan to seek relief against my provider in the Denver Federal Court for intentional infliction of physical and emotional distress, Age discrimination and also relief under the Americans with disabilities act. I hope I can survive this route but have my doubts.