Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. I had been athletic my entire life. Basketball, Track, Tae-Kwon-do, I coached my daughters team in Soccer, along with two other teams. When I was 18, I had knee surgery that was in 1979. They told me if they ever started replacing knees I was going to need one. I got shots for arthritis over the years, but still worked in Human Resources all the way to Director. Finally came the day , it was time to replace this knee. It went smooth. After about 6 months, something didn’t feel right. I kept telling the doctor. No, No he said for 2 years I walked in pain. It swelled it bucked, it burned etc. On a fluke another PA saw me by mistake. An x-ray was taken and all he said was you need to see a surgeon. I never went back. The knee had collapsed and I had been walking on it for over a year. I went to another Surgeon to see what could be done. He went in and replaced it. Surgery went fine. Lots of therapy. Still plenty of pain. I was put in a pain clinic ASAP. 2 years later he had to go back in again. Permanent nerve damage. They went back in again just to change out the knee cap and that put me in a skilled Nurse unit off sight. The depression has been unbelievable. I haven’t taken my life because of Religious reasons. I don’t drive anymore. I have social anxiety. I stay home all the time. I go to church when I’m not in pain. I have no interest. I have no will my last parent just passed away a couple of months ago and i can’t get on a plane. I really am afraid to say anymore I’m so paranoid. You guys aren’t coming to my state so that is why I wrote my story

2. I’m 59yrs old this past Oct. I used to gripe about all the things I’ve been unable to do for many years now. I can’t do anything repetitive like sweep, mop, rake, exercise, etc. I can’t sit, stand, lay or stay in any one position for any length of time. Certainly can’t do off-road or watercraft. There is no swimming either and the list goes on. You get the picture? My pain started intermittently around 1994, by 96 I had my first surgery. The docs thought my back pain was caused by large fibroids? Talked it over with my other half, we decided not going to have any more kids and I really need to get rid of the pain. My job as a medical assistant/X-Ray tech, was very physical and demanding. After surgery I had so much pain they had to hook up a 2nd pcs (patient control analgesic), after the nurse stating she had the 1st one wide open? I woke up practically screaming and finally my doc/surgeon believed me that the pain meds I was taking were not helping the pain. After several days I should’ve already been home but because of continuous pain, they wanted more tests. Nope not the kidneys? Lol. I laugh when I think about it, there was nothing they could think of to do? Well how about checking my back? They sent me home with double the meds I was on before surgery. Went home and can’t remember if was same day or next morning I began having pain in my chest? I coughed up a little blood and called the doc right away. Didn’t know what to tell me? Later that day or next I got a call back and told must go back to hospital right away! Ok, so after making them promise that I would go right in as opposed to sitting in the ER, I went back. I did go in quickly and had blood gasses,etc. They even tried to do the tests twice not knowing it was done! Good thing I had a clue of what was going on. Found out after a bit that I had pulmonary emboli and 7more days in hospital on blood thinners which of course means they have to take blood and check it about every hour, day and night. That was the beginning of the end. For the next ten years, after finding out that no other specialist/surgeon would touch me due the PE, I tried many different forms of my career. Sitting half day, walking half day? Taking months at a time off to get every kind of treatment you can think of. During this time finding out all the medical conditions that plagued me but also experiencing additional conditions over time. I got a sciatica on the right from a messed up chair at a job that I thought I could do even though it paid $7 less than what I usually made. Got so bad, knotted up to a point of being unable to lift my leg. Couldn’t walk, drive, sit, etc. If not for family coming, helping me to car, drive to treatment, many different types, I wouldn’t have been able to do alot of what I did, thank God. Took about a yr and finally decided a last ditch attempt with acupuncture? Ins not cover so I paid $80 an hour. It probably was the only thing that got me walking again! Not long after I got it the other side. All this while dealing with multiple bulging disc, crushed disc, fractured pelvis, ddd, scoliosis, osteo arthritis, mortens neuromas both feet, muscle spasms so bad it was useless to try anything then. I went on to the injections, traction, adjusmts, blocks, therapies, ultrasound, stimulators and so on. I was still taking intermittent pain meds that I really needed all the time but was too difficult to get any doc to believe my level of pain, even with the documented proof! Went to pain classes, practically jumping through hoops to get relief so I could get some work to pay the bills? So most of you know how it goes? To present day even when on my higher dose of meds I forever have pain,spasms, atrophy in both buttoks an thighs. Never goes away, no matter what, ice, heat, motrin, Tylenol, stim, massage, morphine. So annoying and depressing all by itself. By 2003 I couldn’t work anymore and filed for disability. After supplying all the records, work history, all the providers,specialist, surgeons, facilities, etc, release and sent records, they denied me! Did they actually believe I’d rather try to live on their pittance than what I could make working? Not to mention I loved my work. Had to appeal and in the 2yrs it took me to get a court date, I lost everything. Couldn’t pay the hmo ins. anymore. Lost savings, house, car, 401k, etc. When finally went to court, 3wks after they foreclosed on my home,, two yrs after I filed, took the judge all of 15minutes to approve me, after speaking with their doc, who went through my records all that morning. Ok, I say to myself. I can get a roof overhead, was staying at a friends house. Luckily our son was older now and didn’t live home at the time. I said self, you’ll have Medicare now and can get more help. Couple more yrs and alot of torturous pain later I went to a medical trial for pain meds and they were going to pay me? Didn’t know it at the time but I knew I didn’t have to pay for the doc or meds. That was when I met the man who would save my life. My pain managemt doc. Didn’t start seeing him right away because he didn’t want to give the meds I had been taking. He would not write for anything with Tylenol in it. He wanted to put me on oxys? I heard all the hype and resisted. This lasted about a yr. In the interim I was seeing another MD, at one of the pill mills. They only took cash, no credit and the pain mgmt doc took ins, Medicare?I was stuck on not wanting to get on oxy, I was kind of afraid of it? Dummy that I was, not thinking of the irreversible damage to my liver that the Tylenol in the pain meds was causing! They liked me because I was actually a legit pain patient. One day I’m telling the doc about some side effects I’m having with an anxiety med. She proceeds to tell me that I needed to take it everyday. Now this is 2mg. Xanax we’re talking about. It’s a good thing I had a clue about these kinds of meds and asked my pharmacist about it. They said, sounded strange to them and I agreed, sounded strange to me too. I never went back. I made an appointment with the pain management specialist and never looked back. Lol. First thing he did was take me off the xanax completely. No benzodiazepines! It took several years of trying and adjusting until I was managing my pain w/o the mix of other harmful drugs that if I had no knowledge of, probably would’ve overdosed! As it was I rarely drove, once maybe twice a yr, before regular appts at pill mill, usually had someone drive me. The few times I did drive, out of necessity, I was pulled over or stopped at a light w/o moving when light changed and was arrested twice over two yrs due the xanax! I had a half million dollar bond on a first offense after already bonding out for $5000 and re-arrested on a larger charge because the 21pills I had on me with the bottle in the car weighed over the 28gms? The young woman rookie trying to make a name for herself said that because I only had that many pills out of what the bottle said, that I must be selling them? I tried to say I didn’t carry all on me but she even said it to my face, she was going to bring me down! My meds were in the bag with my stuff when I bonded out? How crazy is that? I figure go to court the first time, admit to dui, meds are legal I have records. That’s when they arrested me again w/half mill bond! Now I needed a lawyer. Guess where alot of my retro disability benefits went? I went through hell, treated as an addict, forced into treatment and forced to say I was an addict or be tossed out of program, which caused me fear of returning to the judge noncompliant. I still took my pain meds throughout the program, going through the same one twice on two seperate occasions. I called it a big cash cow having a revolving door on the state rehab and me taking a spot that someone else needed because the state got paid for every head, no matter what! Boy, did I get alot of education. Had a legit rx? I wasn’t high, I was just able to participate. The groups were held upstairs in the building with no elevator. I got through it and thought to myself, even if I did have issues with drugs they certainly wouldn’t be able to help me in a matter of 4wks? I learned alot from all these experiences. I definitely learned that if the government doesn’t reverse and restore all this and I have no hope of ever living with less pain, meds never took it all away, I would check out before ever trying to get or buy any meds illegally, taking a chance on ever, ever going through that again! Especially at my age now and with no pain meds. I would probably curse someone out daily if I even made it daily or probably just put me in jail, I would be so miserable, going through ptsd, in pain, I’d probably curse the judge! Experienced many things over those years. Especially all the idiots who practice medicine out there! They got that right, practicing because they sure as hell don’t know what the hell they’re doing. If I had more space, time and energy I could tell you some stories of what some of these so called MD’s wanted to do to me. I mean I was desperate but not stupid! It’s been 14years of having a semblance of a life. Not being miserable all the time, hating everyone and everything. Depressed, etc. Even though I can’t do everything I mentioned at the start of this, I can still do some things I enjoy, gardening is one but able also to do other things that I don’t enjoy, as in housework. Lol. I have 3 dogs and a family that I’m able to be a part of. Instead of whining about what all I can never do again, I’m grateful for the things I can do. It’s living, not just existing wishing you didn’t! Hated living and being burden. My whole life changed w/managemt of the pain. The government has taken that from me, from all of us who have been through similar scenarios! After all our suffering, hard work and sacrifice just for the privilege of being able to function, getting a record but never being in trouble your whole life, being treated like you are less than because you’re on disability. After all this and more we finally come to a light at the end of a very dark and painful tunnel and the government sees fit to deny us, once again! To tell us we’re less than. We don’t matter, our lives don’t matter, as long as addicts, abusers, mills, are all causing overdoses or death the government feels content, comfortable or nothing at all, to trade their lives for ours! Difference being we didn’t choose this and the addicts, abusers, etc, are going to keep overdosing just as they always have only now they’re doing it at our expense! I feel like I’m starting all over again. After spending almost half my life trying to live it w/o agonizing pain, I’m too old and too tired to do this all again. It was hard enough with the treatment and the shortages, etc, to make it now impossible for most cpp is just taking it way too far! I feel like I have ptsd, like I’m reliving all the horror I went through only with no hope of relief? Not as long as Trump is in office, we won’t win because he would like nothing more than for all of us chronic pain sufferers to just shrivel up and blow away! I don’t believe the man cares about about anything unless there is something in it for him! Money, fame, power. He probably says, goody, goody, goody in his sleep as he touches each of his fingertips together one to the next, like a mad scientist?
   I will be contributing everything I am able to dpp. I believe in it, I’m so very grateful for everyone who is a part of this. If I can scrounge up some hope, anyone can!! I know that for millions of us, They are our last and only hope. I’m praying we can make them listen and understand what the real truth is and resolve this fiasco.

3. I have lived with chronic pain for 14 years. It has been a nightmare. It has affected every aspect of my life. Left me seeking every possible alternative of treatment. Finally being disable, I could not work any longer. This lead be to surgery. After being told I can help you, I went for the surgery. It was a nightmare full of complications, leaving me with more pain. I have failed back surgery syndrome. Both legs have pain, numbness, burning inflammation, swelling. It has caused othe side effects from taking other drugs, NOT OPIODS! The opioids were the only relief I have had, and now they want to take them away. Now my life is back on the couch. My legs get weak, unable to walk far or stand for long. My life has become very small. From being very active person, to almost nothing! My pain management place, in fear, has taken away to two important pain medications for keeping my pain under control. He has given me an ultimatum, either stop take one or he will stop treating with my pain medicine. The one medicine is prescribed by another doctor? Can he do this!? I have been in pain for 14 years. I know my own body. Now that this has been done to me. I have been in bed for the past week from pain flares! How do pain patients fight back? Do we need to get attorneys? Do we need to get one from the ACLU? Who is out there to fight back? I have every right to have control of my own body! All this because of addicts who loved the feeling from getting high. When you are in pain there is no high. Only the feeling that you can live life again. That you may see your grandchildren, go to club, maybe a dinner once in while. Addicts have choices as well! The can go to NA meetings, there are injections to counteract addiction available. Many and I mean many addicts do not take advantage of these programs! They laugh at these people who want to help them! They make fun of these programs, and go out and buy more drugs! Only a handful are successful in becoming sober. The outcome of all this is that chronic pain patients may be put into the same predicament! We may have to turn to the streets! I pray it does not come to that.

4. I was injured in 2011 and I wish I had been killed instead. I had almost a million $ in life insurance through my job. My husband, who was already disabled due to complications of infancy-onset diabetes, would have been provided for and had a great life. Instead I was forced out of my job by a boss who didn’t believe I was really hurt, we had to file bankruptcy because of my medical bills, we’ve lost everything. When I say this, the sheep give me big sad eyes and exclaim, “oh, don’t say that…..” and gush about how great it is that I’m still here “for your family.” Well, nobody but me has to live in this body.

   We are both on disability and I am left with severe chronic pain. I am treated like a drug addict and was put out of a practice yesterday for complaining about their “high risk measures” that are due to a mistake in THEIR records. They have me down as a psych patient. I’m not, and they wouldn’t even call the doc they have listed who would tell them they’ve never heard of me! I was given a script “to help you ‘taper off'” – not to treat my pain. I am not dependent or addicted.

   Nobody should be treated like this,. or have to live like this. It isn’t LIVING at all.

5. Since 1980 I have lived with pain from a near fatal car accident that left me broken from head to toe.
   I have many issues and over 50 surgeries, most of which were or have been orthopedic and neurological/spine related.
   I started pain management over 12 years ago. Just 18 months ago I fell victim to the CDC GUIDELINES at the clinic that had recently purchased the clinic I had attended every month for 9 years.
   Since, I have suddenly developed heart issues and had several heart attacks.
   The most recent was following a total HIP REPLACEMENT in October 2018.
   I was released 2 days after my surgery. My surgeon wanted me out of there the day after surgery but I felt horrible and my pain was out of control. He expressed his resentment for my decision, but I stood my ground. So, I stayed and received very little attention from the staff. I never saw him again this visit, of course.
   Just 6 hours after my release, I was taken by ambulance to the er. I had no clots, simply unmanaged pain.
   I am in the bed now 24/7. The chronic pain is horrible and rehab has been diffucult.
   Something has to change before my death is caused from the issues plaguing our lives in chronic pain.

6. I’ve had chronic pain now since June of 2008, from gun shots. My first pain doctor was intolerably even unprofessionally accusative when I’ve followed the prescription to the letter and happily submitted drug screenings every other month, only to point out why his accusations were false because of a separate condition that I had told him and that he wrote down on the first visit, but he was more set on labeling me a drug seeker than anything to do with my pain. It gets better later. My second doctor cut me back from what the first doctor was giving me, plus injections. Well the result of those injections was an infection in my rib, requiring surgery, of which the lead surgeon described my second pain doctor’s method of injections as “unorthodox”. This surgeon gave me a referral to the doctor I’m seeing now, who I’ve seen for almost four years, who put me on methadone (you know, the stuff t hey use to take people *off* of opiates, and unlike oxycodone-based opioids, methadone doesn’t harm the kidneys and has about as much euphoria as a glass of water.. so yeah, it’s chemically designed not to have addictive affects, so all of these are pluses in my book) which worked like a charm and I had been on ever since. That is, until March of this year, when he either abode to the CDC mandate chart or lost his license to practice. I don’t blame him one bit, he disagrees with the mandate and would put me right back on the methadone regimen (I was even taking less pills than before) that he had me on before. So am I drug-seeking? Let’s see, the first doctor, who I was with for six and a half years, had me on oxycontin AND percocet everyday. My second doctor gave me percocet and those weekly injections. And now I just want methadone, which works great. So my record alone should tell you that I just want the pain to go away. Well, this CDC mandate cap had cut my dail y methadone intake by a third, and upon willing to give it a! shot, it only made my pain increase gradually by the day. It just got worse and worse, so we shifted around, tried one thing that was allowed, didn’t work, tried another thing, and now my regimen doesn’t make the pain gradually come back more and more by the day, but it does force me to schedule around a six hour block of guaranteed, 7-out-of-10 level pain. That’s down from eight hours, as it’s taken two months to work it out and now I have a system from this inadequate pain treatment. We’re being completely ignored by the mainstream media, but thankfully (in words only, no action so far as of this writing) the AMA hasn’t and we’re trying to get more people to listen. So thank you for listening to us.

7. I am a chronic pain patient that has had my medication taken away. I suffer severe pain every day and am unable to function as I had been with pain control. I’m an advocate for myself and the others that are suffering and dying due to the changes in opioid prescribing. This change is not about prescription drugs, it is truly about illicit drugs being smuggled into the USA. Stop the punishment being done to our Vets, elderly, disabled and sick. Thank You

8. I’m not for sure how many words I have but here goes. My dad had a genetic disorder called neurofibromatosis. He had 27 surgeries up and down his spine and in his body including in brain surgery. Fast forward to me being 41 and I get a brain tumor and have to have a major brain surgery. They’re all of this time I am diagnosed with schwannomatosis which is a genetic disorder that causes great pain all over your body even when there is nothing there it is sending signals to the brain that there’s pain. Now I’ve had a brain surgery and a tumor removed from my spine which left me crippled. I am in so much pain everyday and I get cluster headaches now on top of all of that. I even go to MD Anderson because they’re the only ones in our region to know what it even is. So now I have another spot on my brain and another tumor in my spine and I am in great pain each and every day to the point that it makes me want to and my pain. I do fought with the doctors and the pharmacist and I cry each and every time. Good Lord, I am 56 years old and I cannot live in this pain. This disease will not get better it will eventually take my life but until it does I would love to enjoy your days with my grandchildren, days with my husband, time away from home sometimes, and even to read the Bible. But all these things I can’t do without pain medicine. I’m so frustrated for being harassed because I have a disease that is inherited. It’s just a long-drawn-out disease, it’s not like cancer but it is like cancer as it has terrible side effects.

9. I’m a 58 year old woman who has degenerative osteoarthritis of the spine and I have 75% nerve reduction function in my spine. My pain includes fibromylgia pain and chronic migraines. I have inverted disc and buldging disc. My doctor said there is nothing they can do to fix me.
   I have been in constant pain for at least ten years. I get steriod injections every few months and I take opiod pain meds along with muscle relaxers for the pain.
   My health has been on decline over the past few years to the point that I no longer do grocery shopping, go out to social functions or do much that I would normally do because of pain. I already limit my function due to the pain and have trouble sleeping because of pain.
   My doctor already made me choose between my nerve medication and my pain meds. Now she is planning to wean me off of the opiods per government guidelines.
   I do not take the maximum doseage of pain meds. I take three narco per day and I only dull the pain.
   On holidays or if I do too much I can count on being bedridden for a few days because of the pain. If they take my meds I will lose any quality of life that I still have.

10. I worked as an aerospace parts machinist. I was able to work 7=8 years longer than I would have ,taking meds. for a lot of back pain. I became disabled in 2003 with 5 herniated disc and other health issues. I was told surgery would not help my pain. I had several steroid injections over the years and needed to take pain meds. Then in December 2012 I was a passenger in a car that was hit by a semi truck, causing the car to spin 180 degrees slamming my side of the car into the concrete medium. I had to have rotator cuff surgery. I had the nerves burned in my back 2x and in my right knee 1x I have had to many steroid injections to even guess, in my shoulder, neck, back, knee, and hand. I also have went for physical therapy ever year since for months at a time. I wear a knee brace and a back brace. Now that I need pain meds. more than ever, I’ve been told I am to be weaned off them. I am not a baby, nor am I a damn dope addict. I do not go get sick or shaky if I don’t take my meds. I just suffer like hell when I move, I can not walk through the grocery store without crying. My back hip and knee torture me. So now I mostly sit on the couch, thinking what the hell did I do to deserve this. I worked hard all my life, what happened to my so called golden years? All the damn taxes we paid went to the damn politicians so they can set back and decide we can all just suffer, they do not feel our pain, so they don’t give a damn. Well they will want our damn votes when they need them. I guess they need to hear that!! I wish everyone of you well and I hope we cam get help. This country makes me sick. I will not walk in pain to vote for their asses again. kind regards, Carol

    ha