Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. I am 60 years young with a degenerative disc disease on top of an old back injury from work in 2000 . Left knee is bone on bone but they will not fix for they say I am ” too young ” . At 57 I could no longer hold a full time job due to my pain and it took me a better part of 2 years just to get an MRI jumping through the Husky insurance protocol hoops and another year or so to finally get into a pain management clinic . By this time I could hardly stand for a period of time let alone walk my Pug for my Primary Care was too afraid to write and scripts for pain other that Gabapentin . As I mentioned , I started pain management in Dec. 2018 and still have not received the ER ( extended release ) meds prescribed to me by me Federally approved Specialist doctor . They have denied by might insurance EIGHT times reason being ” I DO NOT NEED THIS MEDICATION FOR THE DANGER OUTWEIGH THE BENIFETS ” I am speechless . Who are these suits ? Oh , and I love how THEY ( the media ) constantly talk about addicts dropping dead on heroin and show a bottle of pills as the story goes on . They ( the law makers ) keep passing laws and forget those that are in chronic pain and now have to go back to make changes because doctors and patients are suffering . I failed to mention I am on half of my pain regiment which is an instant relief which helps just a bit but is supposed to be combined with my ER

2. I had AML (Leukemia) and I had a stem cell transplant which cured me. I was alive but not living. Like most who went thru that I had many problems from the high doses of chemo which include neuropathy and severe back pain. To make a long story I had a neurostimulator put in my back and other pain controlled with medication. I would have no life without medication

3. At the age of 10 I was diagnosed with mild scoliosis that remained asymptomatic. I even deployed to Afghanistan as a Dept of the Army civilian in 2010 and past two physicals. I was deployed for 16 months and often had to wear 40 lbs of battle gear climbing in and out of every vehicle (including German C160s) imaginable! I even rode in MRAPs which bounce riders all over the place and had no issues.

   On February 22, 2015 i was living in Germany and employee as a civilian with the Dept of the Army. I arrived at work during an ice storm and exited my car, walked to the passenger side and when I reached out to grab the handle I slipped. Like a cartoon character I went airborne landing on the concrete curb. I fell another 2 times as I attempted to get up. My coworkers finally helped me to my feet which is when I thought I might be hurt. I made it to my office and managed to log into my computer before the pain was so excruciating I could hardly breathe. A co-worker took me to a German ER who said nothing was wrong and I just needed to rest for a week. After a week I was worse so this time (because of worker’s compensation (WC)) I went to the Army clinic. The doctor sent me to a German facility to get an MRI which showed I had 2 badly herniated disks. At this point I was signed off work and spent the next 10 months on WC trying every conservative treatment offered. I even spent 2 weeks in an inpatient rehab hospital where I received 2 sets of steroid injections every morning. Finally, the German surgeon said I must have a fusion which I agreed to do. When I awoke from surgery I was in excruciating pain and I couldn’t move my left leg. I spent the next 2 weeks in the hospital before being transferred to an inpatient rehab hospital for 3 more weeks. When I came home I was very sick and on day 4 of being home I was rushed to the hospital with a very high fever. I was totally incoherent. I remember the doctor coming into my room at some point and telling me it looked like I had a bad infection around the hardware and that they had to take back to the operating theater but it’s more like a dream then like reality. Anyway, I had the second surgery and spent the next 13 months trying desperately to recover. Unfortunately, I just kept getting worse and worse and in October I could barely get out of bed. With every move brought this feeling that my spine was crunching apart. Enter my second, surgeon (a 36 neurosurgeon) who was nothing short of a miracle! He took me back to the OR and over the course of 16 hours (2 days) going into through my back and my side he corrected all of my misaligned vertebrae and facet joints, replaced the disks and fused my spine from T11-L5. I was so much better and spent the next 1 3/4 years doing physical therapy, doing follow-ups and diligently seeing my pain management doctor (PMD) every month. You see my surgeon as good as he was could fix my back but he said he could never take away my pain because during the very first fusion the orthopedic doctor had misplaced a screw and accidentally put it into my spinal canal. That one little screw is why I was in so much pain, and even after everything else, why I was still unable to control my left leg. Alas, I have a permanent spinal cord injury!

   Now, it’s November 2018, I’ve been doing rehab and seeing my PMD and doing pretty well. I’ve been able to drive, grocery shop, and even cook some. But now I have to move to Texas because my husband job transferred.

   We arrive in San Antonio and one of the first things I do is find a family doctor. I went over my history and ask for a referral to a PMD. He accidentally gave me two, but I thought one was a surgeon, so off I go.

   I go to the first PMD thinking I was going to a spine surgeon the name of the clinic was South…Spine and…Clinic. When I arrived the waiting room was full of people, probably 75 and I already felt uncomfortable. I was used to the German system where everything is quiet and orderly and refined. Anyway, my name is called and I head toward the person who before I even reach her has her arm extended and in her hand is a urine specimen cup. She thrust it at me and tells me to leave the sample in the bathroom. This mind you is all happening in the waiting room full of people. I was mortified! Here I’m thinking I’m there to see a surgeon and get established and thinking the US has sunk to a new low when you now have to give a urine sample just to see a surgeon. Anyway, I mention not being comfortable but give the sample and am then led to an exam room. Soon after this 20wometjing Asian female flings open the door and asks if I’m Mrs X. I say no, she closes the door. A short time later she returns, laptop in hand and asks why I’m there. I tell her my history (I also give her a word document that has my entire medical and surgical histories as well as a list of my current medications. She starts off by lying to me about the CDC guidelines. She then tells me I’m taking 360 mg of morphine per day (she combined all the opioids I take) and then tells me she interventional and if I’m prepared to have an SCS or intrathecal pain pump she doubts she can help me. She tells me the drugs are no longer helping my pain but she can give me 50 mg of morphine a day anyway. I said no thank you to the invasive solutions, being up and read the CDC report and guidelines (repeat the word RECOMMENDATIONS) and said, “isn’t your willingness to presecirbe an opioid you say isn’t a helping me the reason an opioid crisis exists?” She huffed and gets up and says I can’t work with you and leaves.

   Off to the second referral. I enter, much calmer nicer environment this time. I’m called back, handed a urine sample cup again and then led to the exam room. A very young male doctor enters, again laptop on hand. Asks several questions all the while typing and not making eye contact, stop typing and says, “I’m an interventional doctor and so I won’t charge you but I can’t help you.” Totally deflated I leave sobbing uncontrollably. I am completely lost. I had been told by my German PMD that I’m not a candidate for an SC or pain pump and would likely have a hard time finding a pain doctor in the US because of this ridiculous opioid crisis. My German PMD had just returned from a conference in Boston and he’d heard all about this crazy crisis and the CDC guidelines and he and his other non-US doctors couln’t believe it. In Germany the doctors dictate what treat,ent a patient needs not some government agency. Yes, there are government agencies who provide checks and balances but the doctors are still in charge or patient care and if they say this is what a patient needs that’s it. In Germany opioid prescriptions are written on social forms and they’re very controlled but that’s about it. If the government agency who oversees the forms has a concern they reach out to the doctor. If the doctor says yes I wrote the prescription and it’s real the matter is dropped. They just make sure the patient isn’t getting multiple scrips from multiple doctors. That agency would never question a doctors treatment of a patient!

   I returned to my family doctor and he said both PMDs had contacted him and he was sorry but they both told him I was a drug seeker and then wasn’t anything else (related to my pain) that he could do for me. Thankfully, I met a fellow pain warrior in physical therapy who recommended her PMD. I sent him my records and he agreed to see me. When I went he said, “wow you’ve been through hell what do you want to do?” I was shocked…finally a real doctor allowing me to have ownership in my care! I was elated! We talked about my options and he basically said at this point my only option was pain meds. He did adjust what I take and the dosgaes but so far it’s working out for me. I do have an increased level of pain but he allows me to call him and that’s been great. The pharmacy he uses is small and I can call them too.

   They have restored my faith in the US medical system and at least for now I feel like I’m going to be okay.

4. I personally have had to live with severe pain for 20 years. I had to have total spinal fusion due to a double major accute spinal scoliosis deformity. My right lung was crushed and my heart was being crushed by the spine. The second surgery was a nightmare. My Dr. was not prepared with a back up Dr. My 2- 1/2 hour turned into a 10 hour surgery and I almost died. I was in ICU for 5 days trying to stop the bleeding before being sent to the floor. There I received horrific bad service. After having all of my vertibrae bones severed in half on the front all of my insides taken out then rolled over and cut up the back to my neck, the bone cut off to the spinal cord, several rods inserted and the graft laid onto the bone. The bone was bleeding so bad they tried to stop it but could not. Finally they just put in drains and prayed. My Dr. left shortly after my surgery for a ski vacation, and left me the bad care of his assistant Dr. Where I was not given any pain medication for 18 hour shifts, three times in 5 days. On the 3rd time I called 911, and the nurse ran into my room and jumped on me to rip the phone from my hand. When she finally pulled it from me I had blood running out of my mouth, and from the pain had grit my teeth so hard that I cracked several molars and my lower jaw colapsed. In all, over $10,000.00 of dental damage. That nurse loosened all of the just put in hardware, sheared the heads off of 6 of the 3″ screws the Dr. had just put in, due to her weight @ 280 pounds or more. And caused massive nerve root damage that would make crowning at child birth seem like nothing. But it lasted day after day, week after week, and month after month for over a year. Finally after visiting several Dr’s I found the 2 top scoliosis Dr’s in the nation. It took both of them and a crew of neuro surgeons to decompress the damaged nerves, to put me back together again the best that they could. I was told and shown the reports that I would have irrrepairable nerve root damage to 5 levels in my lower back due to the attack, for the rest of my life.
   Now I live everyday in pain. I can somewhat control it with pain medications. It took several years to get the right blend where I could balance my pain enough, that I could build a great company to recycle Ag post consumer waste, and supply to US and foreign users alike. 17-20 million pounds a year saved from our landfills or being burned and buried in south 40. I found large corporations to use our products, and help save God’s earth. This had never been done successfully in Oregon before. Over 24 other companies had tried and failed. But even though it was extremely difficult, with my Lord’s help, He directed me where to go and get it done. And that I did. I built my company on my knees because I could not sit for extended periods of time. And I was the Pres. Sec. and accountant ahead of payroll in three states alone. My days were 14 hours 7 days a week. While also raising a daughter and home schooled her. I look back and don’t know how I did it. If It had not been for My Dr’s who assisted me with pain meds to semi control my pain, I could never have done it. I would most likely be dead and gone. Few people can live in that type of pain and survive. Many are forced to the street for drugs just to live. WE the chronic pain victims, are abandoned and hurt by all the new laws. This is un exceptable in America! The politics are murdering and killing many Americans, including Vets, who have already sacrificed enough for our country. And now all of us are being forced my this legislation to suffer or die by beurocrats who do not know what real ongoing pain is. They lump us with the addicts and throw us out to gain political points. We are caught in the middle and abandoned to suffer until death. Is this what America is becoming?
   Our legislaters should be concerned about us! We need to have the medications to survive and have some sort of life with controlled pain. Where are OUR RIGHTS TO HAPPINESS? Why are we being used and sacrificed for an epidemic we did not start or are even a part of.
   I now am facing more spinal surgery for my neck, due to the previous fusions. And my lower back hip joints, again from wear from the previous fusions. It’s causing nerve pain down both arms and into my hands where I am loosing the ability and strength in my hands, now both need surgery. So now I have severe pain and more surgery with additional pain. All while the politics are taking away all of my meds!! Isn’t there a Dr’s creed is to “due no harm?” And now they are being forced to harm us by politics telling them how to practice medicine. People who are NOT DOCTOR”S telling them what to do, how to do, or they will take your licence!! Sounds like RUSSIA. Where are our freedoms, the ones who follow the rules?
   People cannot stop others from doing what they want to do, PERIOD!! The individual has to stop it on their own. Our Policy People have not learned the basics. If someone one wants to rob a store, they are going to do it. If they want to kill someone, they are going to do it. Reguardless of the laws on the books. DO NOT PUNISH THOSE OF US WHO OBEY, INSTEAD PROTECT THOSE WHO ARE DOING THINGS RIGHT! We too have a “RIGHT TO LIVE” given to us by our forefathers and OUR BILL OF RIGHTS!
   This short sighted view for expedency has caused grave harm to thousands here in Oregon, and MILLIONS across our country.

5. I,have lived with chronic neck and back pain for over 10 yrs. I am not an addict . I go to a reputable pain clinic I follow the rules and I take the meds as prescribed. But I am being punished and hurt by the CDC actions. I,have had 3 neck surgies and about to have a 4th I have 4 bulging disc in my back i suffer every day with the meds since they have taken over half my meds I barely ger out of bed .

6. I am a chronic pain patient and have been since 2010, after failed knee surgery, followed by a revision knee flap. Prior to this surgery, I was working for Florida Health Department as a Registered Nurse. I was referred to a pain management doctor a few months after the revision, and have been going to this particular doctor in Ft Myers, for almost 9 years. Over the past 9 years, I have been denied pain medications by some of the pharmacies in town, because someone there had decided I didn’t look like a patient in pain. My daughter and I were forced to drive to numerous pharmacies each month to get my prescriptions filled—sometimes driving to 7-8 pharmacies before finally finding someone to fill them. I then discovered Prime mail service offered by my insurance company, and started mailing my prescriptions out of state to be filled. This certainly made our lives easier.

   In July 2018, Florida passed a new law with a formula for maximum amount of pain medication each patient would be prescribed, based on the premise of being at a higher risk of overdosing. A few weeks after this law was passed, I was immediately decreased on two of my pain medications, even though I had just had a total hip replacement a few weeks earlier. I then had the second hip replaced in November and was told my pain medication would be decreased even further. After I complained, they agreed to let me stay on those medications for one more month, before further decreasing those meds. The thing that I find amazing is this–for 8 years I received my prescriptions based on my diagnosis of chronic pain. Once this law went into effect, my pain was no longer considered chronic pain and that was the reason my medications could be decreased, according to this new law!

   Thank GOD that the two hip replacement surgeries, have decreased my pain level substantially in my knees and I am able to tolerate the pain with the decreased pain medications I am now taking, but have been told that I will be prescribed even lower doses when I return for my next appointment in March.

   I am so glad there is a movement to protest this outrageous treatment of patients who have chronic pain. Florida has such a large group of senior citizens who endure chronic pain, and no one should be punished for having pain, just because there are overdoses and illegal users/sellers. I was worried that I was going to have to start seeking my pain medications on the streets! These pain management doctors have read into this law that there is a maximum dose allowed, when in fact, it is a suggestion. Let’s all rally for our rights to get some relief from pain.

7. In 1993-the left half of my pelvis and left hip were removed due to cancer-Chondosarcoma. A artificial hip was inserted while the pelvis was reinserted with 3 steel plates and 20+screws. 3 surgeries later over 250 non removable antibiotic beads were inserted to stop a severe infection and the artificial hip was removed as well as the left half of my pelvis along with the steel plates and all but one screw. It was left in because it was too dangerous to remove. These surgeries left my left leg 1 inch shorter changing the way I walk and causing the start of chronic pain in my left hip/pelvis and lower back. Since those surgeries I have been back to the OR table ten more times. Everything from gall bladder removal to a cervical discectomy where 2 discs were were removed from my neck and a steel plate with 6 screws were used. I have also had a large cyst removed from my throat as well as life saving Bariatric Reversal surgery in Nov/Dec. 2018. All of these 14 surgeries have left me with severe chronic pain, forced me into disability retirement and I too am dealing with pain Drs that are afraid of losing their licenses and have cut my opioid pain meds way way down leaving me with constant pain again. I am so tired of the pain and the Drs being afraid to help me. Thanks for listening.

8. I am a chronic pain sufferer due to two separate spinal cord injuries – one and a half years apart. Both were due to disks in my back rupturing and the disk material crushing my spinal cord. They were spontaneous ruptures with no trauma or accident causing the injury. Luckily my spinal cord was crushed but not completely severed. (My surgeon described the pain from this as being the same “as if someone beat your spinal cord with a hammer”) Excruciating is putting it mildly! Within a few hours, I became paralyzed from the waist down with no sensation. After surgeries to remove the disk material I was told that I had only a small chance of regaining any sensation or control of my lower body. I say I am lucky, – because against all odds I did start regaining movement and sensation. As sensation comes back there is a lot of pain involved as each nerve regains some signal. I am positive I would not have been able to put up with the pain through the injury and then over ten years of physical therapy without the pain medication I got. Many different types of medicine were tried from from pills to injections and inhalants. Some worked better than others. We found a combination that worked well. The ones that caused me least side effects were opioids. I took very strong, supposedly addictive medicines for almost daily for 15 years. I NEVER became addicted. Nor did I use more than medically necessary for my pain. After 20 years I am now only taking medicines as needed. Sometimes I go weeks without needing them. I live with the knowledge that another injury like this could occur in my future and it worries me that I may not be able to have the medicines I need. I now find it difficult to get doctors to prescribe those medicines to keep on hand for when I do need them. I also have great sympathy for others who still need those medicines daily. Pain patients NEED strong medicines to improve their health and quality of life. Lack of self control by people who misuse medicines should not be a reflection on patients who are in pain. Politicians and Doctors who think they are helping addicts (who make a choice to take too many drugs) are at the same time hurting patients who (through no choice of their own) find themselves in unbearable pain. Maybe my injuries have hardened me, – but compared to patients suffering in pain, – I couldn’t care less about what happens to those who willfully abuse good medicines! Don’t punish pain patients!

9. I have severe rheumatoid arthritis and my pain medication has mostly been jerked away from me. I’m never getting better. I will slowly get worse. And I am treated like a drug addict every time I have to ask for pain medication.

10. Hi. I got sick February 1, 2007. I found a lump on my right Breast and it was small but I wanted it checked. I went to do all the testing and it came back invasive lobular carcinoma Insitu, which is cancer derived by estrogen. To live long I opted for a double Masectomy verses just the right one off. After surgery I had to get a complete hysterectomy which is all my womanly gone. Then I waited another year to get reconstruction surgery on my Breast. During all this time I was on about 20 medicines. The chemo tore me up and made me so sick I thouht I was dying. I was in shock and in a bad state of mind. My surgeon said I can’t treat her unless she is stable so he ordered me 2 meds to help that situation and the pain med I was on. During this treatment is when I found out I had fibromyalgia, CFS, sciatica, Piriformis syndrome, lymphadema and so many more conditions. After my breast were done I had to go thru 3 more surgeries one for another reason and 2 for my breast. I been on a pain med for 11years and during these years I had many doctors tell me I’m pyscho and need mental help, it’s all in my head, I don’t have pain. Pain medicines don’t help fibromyalgia which is WRONG. They ease my pain greatly. I went to a couple pain clinics who referred me to another one and another one. Then I went back to my pcp and she treated me like I was a drug addict. She said I’m taking you off of all this right now you are getting high off of these. I said no I’m not I don’t get high on medicines. I never did drugs in my life. I take it for the pain I’m in. She through 2 sheets at me and told me to leave. After that I thought I have to advocate for myself, these doctors have no heart, don’t care about the true pain I’m in. I went to another pain management. At first they told me we don’t give meds out to help with pain only injections. I said really because this person referred me… That changed what he said to ok let me go get the actual doctor. They started me on the very lowest dose of an extended release only. I took this med even though it didn’t do a thing to ease my pain. I talked with the doctor an actual Doctor about 3 months after with nothing helping me. I told him look I am here for you to help me control my pain and for no other reason at all. I didn’t ask to get sick but I did and trust me if I could remove it I would, I want my life back but I can’t have it back so the least I could have is some quality back into my life for me, my husband and my 3 children who lost their active mother. I’m not on drugs and I don’t do drugs. Actually I’m afraid to die. I want to live a very long life and having breast cancer put the fear in me of losing my life. He changed his toon for a good while so he put me on a better pain med but only extended release. I had nothing for flares, Breakthrough pain or onset of pain. After being there going on 3yrs another doctor came in one appointment
    I went to and told me I’m taking you off your pain meds starting today and your anxiety med too. I talked to him nicely he laughed, I said if you could feel what I do for one day you would understand. He said yes I’m glad its you instead of me.. I sat there with my mouth open and eyes big like what did you just say. I said it’s easy for you to come in and tell me your off your meds when I suffer everyday. He said I’m a doctor and I can do whatever I want, see my name tag. I said thats it. I will not put up with anyone treating me like you are right now. I said I’m done coming here and you will not ever get a good review from me. I will turn you in. I walked out and I picked a total different pcp from a different area and it’s a very nice place. This needs to STOP. IT’S UNCALLED FOR, DISRESPECTFUL, VILE, LIES when a doctor takes a vow to help patients with their pain. What I don’t understand is they give you the pain meds and you get drug tested, urinalysis, blood work and mouth tested. They look in the records to see if you are getting scripts from anyone else and if you pass these what is the problem with taking your pain medicine. If someone chooses to get drugs from a stranger on the street and it’s mixed with fetanyl and they die or overdose, that isn’t my or anyone else fault who has chronic pain, so why do we have to pay the same price as if it was us who overdosed? It was that persons choice to do so not ours. When someone murders someone does that mean we all have to go to jail? If someone robs a bank and he goes to jail or gets a hefty fine… Does that mean we have to pay the hefty fine aswell or serve the time? If someone goes thru a red light and gets a ticket and a point on their license… does that mean we get a ticket and have to pay it and we get a point on our license just as she did?
    The answer to all these questions is NO. NO. NO. NO and NO.
    I think I made my point very clear here.