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Here is my medical history;
#1 Early 2009 – Cervical fusion C4,C5,C6
#2 Late 2009 – Right Knee Replacement, Doctor wanted to do both knees.
#3 Late 2010 – Lumbar fusion, L4,L5,S1 with Lamenectomy. Because the L5 nerve root was impinged for so long (about 20 years) I now have permanent nerve damage in the right leg along with nerve pain issues.
#4 Late 2011 – Lumbar fusion L3,L4 with Lamenectomy.
#5 Late 2012 – Started out as a L2, L3 fusion surgery, doctor found extensive arthritis beyond what was indicated on the MRI/CT scans. During this surgery Doctor went ahead and fused me from T10 down to S1.
#6 2018 – Neurosurgeon found I had flat back syndrome and broken rod, and a multitude of other issues in my spine.
This surgery involved two of the practice partner surgeons and 11 hours of surgery. THe first 3 hours of this surgery was to remove extensive excess bone from the lumbar area. Then, they took ALL of the pedicle screws and rods out of my spine, they then cut two 23 degree wedges of bone out of my lumbar vertebrae in order to bend the spine to recreate the correct curve of the lumbar spine. Then larger pedicle screws and rods were installed, but they also found a disk ar T8 that was impinging on the spinal cord so they had to install the hardware from T6 all the way down to S1 trying recreate the natural curve of the spine.
I now have sciatic nerve pain in both legs, primarily the right leg. Numbness and tingling in both feet and some tingling in the legs. I get what feels like electrical shocks in the legs and feet. Constant throbbing pain in the lumbar region, down legs, with it primarily in the right leg.
The pain never stops. Never.
Without pain medicine I would be in my bed laying in the fetal position curled up begging my wife to find someone to help me. Before my back surgeries this was the case. I was a 46 year old man crying and begging for help. The surgeries did help alleviate some pain, but induced other new pains. My issues are documented and legitimate. However, as usual our lawmakers did not think about those of us in severe pain every day of their life. They had blinders on thinking that all pain medication was bad and it had to cut down lower limits no matter what.
They were terribly wrong and have cause much suffering from those of us who experience chronic pain daily.
My pain management doctor has reduce the amount of pain medicine was taking. That dose was working to stop my pain and allowed me to be more functional. Now with the new lower dose required by a faulty law, I am now limited by my increased pain due to the lower dose.
The state and national lawmakers, and DEA need to revisit their restrictive laws and understand what the law abiding citizens, who have chronic pain, are experiencing. We take our medication as prescribed. We have monthly doctor visits. We have continued procedures to try to help with the pain in addition to the medication. We are not addicted, and we do not doctor shop. We are in pain, and it does not go away with aspirin or tylenol.
I’ve been in chronic pain for 36 years now. I broke my back at 15 and was lucky to not be paralyzed.
I’ve had numerous spinal surgeries and will soon be having another. I have rods, screws, bolts, a spinal chord stimulator, disc fusion, among other surgeries & injection I’ve forgotten names of. I also have degenerate disc disease & spinal stenosis which is closing so much my surgeon is worried about me being paralyzed that is why I need more surgery right now. My surgeon is working on setting the date up now. My pain is constant there is never a time I feel no pain. If I don’t take anything I can’t move. I explain it as I turn into a rusted tin man. I have to curl myself into a ball on my left side, “I cant lay on my right side due to the huge pace maker in the right side of my back” on the bed to get a little relief and I am on a heating pad about 18 hours out of my day. Yes, the skin on my back is dead and looks like a huge permanent red birth mark from the heating pad. I also rub down 3/4 of my body a couple times a day with Lidocaine ointment, which is a couple hundred dollars a tube! It kills me to stand, sweep, bend, climb stairs, walk down stains, reach, when the pain is too bad it hurts to breathe. My pain is mostly the lower back, but it don’t stop there it goes into my hips, down my legs, into my buttocks, numbness in my calves and I have awful muscle spasms. The muscle spasms are so severe it jolts my body. I do work as much as I can. Thank God I have something I love and am able to work part time at, even though it’s not the job I trained in. I’m a pet sitter I love animals and I think they help me as much as I help them. I also crochet it helps keep my mind off of the pain and it’s a pretty cheap outlet. I am a musician, but I can’t play anymore due to the weight of my bass & standing & bending just hurts to much. It’s so frustrating I just give up, cause as much as I want to play it depresses me, cause it hurts to do it.
I hate the way chronic pain patients are made to feel like we are junkies. I’m not abusing my medicine. I always try & take the least I need to function. My regular old doctor suggested 5 pills a day, I told her to lower it to 4. I was able to manage the pain at that level, 4 was working. My doctor moved & I got a new doctor who quickly moved me to 3 a day. He said, he don’t and won’t give anyone more then 3 pills a day! Even though he knows I’ve in major pain where my lower spin & nerves are being pinched as it’s closing in tighter. He knows I’m about to have more surgery, but he still won’t budge. I couldn’t stand the pain with only 3 pills, it’s so bad I started searching & ended up finding out about Kratom which is a natural herb. You don’t get high it just does something to help block pain. It is helping a little. Of course insurance won’t pay for it. If I wouldn’t of found Kratom, I wouldn’t be able to work or move 1/2 of the day. I don’t wanna have to depend on medicine to live, but sadly that’s what I have to do. It either stay in major pain, crying & feeling suicidal due to the pain or take pain meds still hurt just less and I can 1/2 way live a normal life.
I prefer to have less pain please.
I am writing this to try to explain why this medication is so vital for my sense of self, my sense of life.
I have NEVER regretted my choice to serve the Military; I was never concerned about what if anything would happen to me while serving. I was always told,” Whatever happens to you, we will take care of it”
I suffer from a handful of Medical Issues, Crohns Disease, Back Issues, and am developing shoulder issues, These 3 have required some surgery. I have a bad ankle; I am developing joint issues (joint issues are attributed to The Crohns). I am also suffering from Bad Anxiety and Depression, as well as Diabetes. I required 3 Hernia repairs as well. Now at one time I was also diagnosed and treated for an Extreme case of Bi-polar Disorder with Major Depression, after years of treatment and medications, and a chain of incalculable amount of Psychologists and Psychiatrists and Social workers, I have now been told I do not have it any more??
I have been suffering from the Crohns Disease for some 25 years or so. The Crohns Disease was first diagnosed when I was rushed to an Emergency Surgery due to an impacted blockage in my Digestive Tract as well as finding numerous fistulas. The disease’s first surgery required the removal of approximately 5.5 ft. of my intestines, (lower intestine, and colon). After the surgery, it became “painfully” obvious that a “normal” life was never going to be possible for me. I was unable to go too far from home, and if I did, I had to have access to an almost immediate bathroom. And that seemed to be the extent of the issues with it. For the first decade or so, I did not require much medical help to cope with the Disease. It seemed to have disappeared, gone into remission for the most part. I did require the repair of a hernia that had appeared after the bowel resection. Some years later, I started to develop horrible cramps and horrible and extremely forceful diarrhea, so painful and significant that I often would wind up in the fetal position to try and cope with the cramps, after the 20 to 30 bowel movements in a day, I would often have to try and sleep due to me being so drained and exhausted. After a couple of years like this with no life to speak of, being forced to work at jobs that sometimes would exacerbate the pain or cramps. This period of time, I was incapable to maintain any kind of gainful employment for longer than a 6 month period due to having to take days off at a time because of the flairs and the symptoms. Eventually I was introduced to Remicade. Even though I did not have any known active irritations in my intestines, and was just dealing with the diarrhea and cramps. I was prescribed and started receiving the Remicade Infusions, “OH WHAT GLORY”, I was able to have a life again since my diagnoses. I had the infusion every 5 to 6 weeks, I was so Happy with life. I was living again. I inadvertently found out how much the cost of the infusions were, I was absolutely stunned by that, but still, I was ecstatic to find this drug and was so Grateful to be on it. During this time I was even able to become an Active Member of My Local Community as well as an active member to my local Fire Department, I even had become a Licensed and Certified First Responder. At this time I was on a small dose of pain medicine to cope with the “breakthrough” pain that I was experiencing. Eventually I was forced to step down from the Office I held with the Local Fire Department as well as being an Active Firefighter. Because of being taken off of the Remicade. I was forced to relocate because of a hurricane. To this day whenever I broach the subject of being put back on Remicade or any other similar medicine, I am told it costs to much, or The Doctor wants to wait for an “Active” flair. It appears to me that the GI’s have stopped treating the Crohns and continue to treat the symptoms I was suffering from.
This is when I was introduced to More Pain Medication. Due to the increasing pain in my back as well as the vicious cramps I was experiencing. I was enrolled in various pain management clinics and introduced to various Doctors; they wound up suggesting and prescribing 2 Percocet tablets 4 times a day. This is the time in which I was diagnosed as having an Extreme case of Bi-Polar Disorder, (Formerly Manic Depressive), in an effort to explain why my back pain was becoming much more of an issue, a couple of MRI’s were performed and it was discovered that I had suffered a blown out disc in the lumbar region of my back, after a protracted regimen of Physical Therapy and other attempts to alleviate the pain. The Doctor and I discussed having a disc fusion of the bones above and below the disc. I underwent the Surgery, it appeared the surgery had repaired the issue and I started to believe I was going to be having a life again. That turned out to be wishful thinking, and the pain started to assert itself again. While dealing with this pain and the issues caused and associated with Crohns Disease.
A Major Hurricane had forced me to locate to a New State, which is my current location. When I was looking for Medical Assistance from The Veterans Administration in the new area, I was informed that my new location did not have the Financial Resources to restart the Remicade Infusions; in fact I had lived in the area for some time before I was even referred to a GI doctor who had experience with Crohns Disease. I was not being treated for the Crohns Disease; I was back to being treated for the effects of the Disease, (Diarrhea, and Severe Cramps). The dosage of the Percocet helped with the cramps as well as the pain in the lumbar region of my back, making it tolerable. I even held a very beneficial employment at this time.
I had bounced between numerous PC Doctors for some time; In fact I do not believe I had never seen the same Doctor more than once at this time. After finding and being assigned a PC Doctor, I was approached about taking me off of the current dosage of Percocet, and being moved to a long term medication because the Percocet could possibly bad for my liver, (even though I NEVER showed ANY Liver issues). After talking about it, we settled on Morphine being the most accurate medication my situation with my Crohns and my Back Issues. So I was prescribed Morphine. After various dosage changes we dialed it in. I become a father in this time and Oh What a GLORIOUS feeling. After years of being unable to cope with people and situations, It looked like I was going to start to have a life again of activity of hobbies and of socialization. Life was remarkable! Shortly after I became a father, I noticed that I was not experiencing Major issues with my mental health.. Time had passed without any Major mental health issues after which I was told “Hey, You are not Bi-polar, Not sure why you had that diagnoses”. So I was no longer treated for Anxiety or Depression. I believed whatever I it was, it was either cured or gone somehow and I no longer would have to worry about it.
A few years went by and nothing major had happened, until I started to get violently sick again. I was unable to keep anything in my system and I was unable to have any type of significant bowel movement. I had experienced this type of reaction once before, and that was when I underwent the emergency surgery in which I was diagnosed with the Crohns Disease. After 4 trips in and out of the Emergency Department of the Local Hospital, It was decided by a the surgeon I was consulting with about the possibility of repairing the Hernia that reappeared after it was supposedly fixed years before. The surgeon decided he would fix the Hernia and while he had me cut open, he would check out my intestines, in an effort to find out what was causing me to be sick and unable to function. I was told after the surgery, that there was a significant blockage as well as a six inch section of my tract that lost all blood flow and died. The surgeon repaired the hernia by putting the mesh in, as well as removing the dead piece of intestine. Being unable to work for a significant amount of time, I lost my job. I was unable to work, so in an effort to seek assistance, I filed for temporary full disability with the VA, twice. I was denied both times.
During this time, I was able to quit smoking after a lot of urging from my PCP. Unfortunately, I wound up putting on a significant amount of weight, and this is when I was diagnosed with Diabetes. Over time I started to develop smaller issues with my shoulders, my knees, my ankles. I did mention to my PCP about these issues to have them documented, since I was on the Morphine it was helping control the pain and discomfort.
Some years passed by and there was a push to start removing Vets from pain medications, So against my wishes my pain medicine was cut in half. After 2 weeks of the new dosage, I was physically and mentally unable to cope and to exist in the state that I was in. At one point I developed an absolute horrible case of hemorrhoids. I tried and tried to get an appointment with my PCP, but to No Avail. I suffered from them for 4 weeks, and was unable to go back to work due to the fact I was unable to perform the job to adequate standards. I had gotten so sick and unable to function, I found someone who would help me do a walk in to the PC Clinic, After almost 7 hours, I was able to see my PCP, after being examined by her and being told by her, “That it is very clear to her”, That I needed to maintain my previous dosage of my pain medicine. I never showed any indication of possibly abusing my medications, and I never called to request refills before they were due, So that day she upped my medication back up to the previous dosage rate. Since I was unable to see a GI Doctor without first getting a referral, I requested that referral. The purpose of the referral was ever since I had that case of hemorrhoids, I had developed some issue in that I had a seepage of some type of liquid from my anus. At one point I had to change my undergarments approximately 5 to 10 times a day.
I went in to see the GI Doctor months later, they sent me home with medication for hemorrhoids, even though I no longer had them. I was told flatly, by the GI Doctor he “had no idea why my bowels were leaking and that I would have to learn somehow to live with it”. I was also prescribed something for the Cramps in my insides, it worked for the cramps but the bloating and the diarrhea was still a significant symptom. The diarrhea to this day is still treated with the Loperamide. It is still not under control.
A few years back, I found out my PCP was retiring, and that I was supposed to be assigned to a new PCP. I was unable to see a Doctor for a couple of years due to not having one. I was still able to receive my medication because different Doctors would issue the prescriptions.
I was finally assigned to my current PCP; I was given an appointment to meet with her, after an initial consultation in which I told her everything. The joints, the back, the shoulders, everything. She mentioned that there was another push to cancel and stop all pain medication prescriptions. I asked about my issues and I was assured that we were going to explore alternate therapies, we were going to have MRI’s, we were going to find and treat my issues. A year later, we have done nothing of note. We tried creams, Tinge Units, Muscle Relaxants. Nothing seems to work. The only thing that has been done, that is the gradual reduction of my Pain Medication. So against my wishes. I am being forced to stop taking them. There is nothing being done to find and treat the cause of the pain that I suffer from every day.
I have noticed the more I think about the unilateral stripping away of my health care, I am starting to suffer again from depression and anxiety, something I thought I would never have to worry about again.
I feel like, We are being discarded, We are being told “Whatever is wrong with you, We NO LONGER CARE”. We just want you to be quiet and just die. Disappear into oblivion, so you will no longer be a burden.
I am so scared when I think about the Veterans that will succumb to their darkest thoughts. They will have 2 avenues in front of them. Resort to Illicit or Illegal Drugs, or End their suffering altogether.
After 14 years of a treatment program, That has been proven to work. I am being told, “It is no longer an acceptable treatment program”. I thought it was my health care. I thought It was about my quality of life. I thought it was the Promise I was told decades ago, “We will take care of you, since you were there when we wanted you”.
Life is so hard – every minute of every day is so painful. I am 54 and have had horrible pain for 24 years due to Ankylosing Spondylitis. I would absolutely live a normal life if I had pain medication stronger than Tramadol, but my PM doctor works for a large medical group and won’t/can’t prescribe the medication I need to live a semi-normal life. I’m actually jealous of CANCER patients because they have a CHANCE at recovering and they receive as much pain meds as they need. But people like me – we’re nothing. I’ve had more than 130 procedures and two major (failed) fusion surgeries but I can’t get the prescriptions I need to function. Had to leave a great career and move from a home (30 years) because I can’t use stairs. I dread the next 30 or so years of my life – how unfair is that? Beautiful kids, wonderful husband and grandchild and I’m unable to enjoy any of it. I am a good person but I wish horrible things on the people who put these CDC guidelines together. May they live in my body (or other people who are suffering) for the rest of their lives and then see what decisions they (wish) they would have made.
Hello, my name is Gretchen Quinones. I have had chronic back pain since I was 26 years old. I am now 48 1/2. This first time I experienced pain, I had been in a car accident and the airbag caused a Galiazi Fracture-the outside of my wrist was dislocated while the inner portion was fractured. I went through surgery and had it pinned. I was in a cast over 3 months. They gave me the normal beginning dosage of vicoden 5/500. That did NOT work. No matter how I explained my pain, I was never allowed anything stronger. Then the day the pins came out and they had to dig them out…….this was so terrible that as a reaction, I accidently kicked the person removing the pins. I had no idea why I was so sensitive to pain.
Then, about a year later, my (then) boyfriend and I were at a stand-still in traffic. I looked in the side mirror and along comes a car going over 55 miles per hour! It slammed into us. My (then) boyfriend only had liability insurance. I didn’t understand that I could have gone after the teenager who hit us. I had back pain day and night! I believe I only went to the ER and was given the same dose of vicoden as I stated earlier-for 10 days only. It was then that I learned to live in pain.
I continued to live in pain, sensitivity to touch, aches and pain as the weather changed. When I was 33 I was finally given the diagnosis of Fibromyalgia-yet there wasn’t anything the doctor was willing to give me for the constant pain. Eventually I was given Lyrica and then Gabapentin-both of which I am highly allergic too!!
When I turned 36, as I merged onto the freeway, my front right tire twisted in and my car rolled 3 times. My lap belt held but the shoulder strap broke and when I came to my entire upper body was in the back passenger floor bed while my rear was still in the front seat. When I came to I was terrified I would be hit so while it took time, I managed to sit up-people were looking everywhere for me because they thought I’d been thrown from the car. I was taken to ER by ambulance. They cleaned me up, did NOT do even an x-ray and gave me 1 dose of fentynal and sent me home!!!!!!! The pain was unbelievable! It took a year but eventually I was sent to a pain management doctor. They did an MRI and they found many permanent injuries to my spine. I had 5 herniated discs, spinal stenosis, osteoporosis and several other injuries that I cannot think of at the moment.
I am currently on percocet 10/325 and ER Morphine Sulfate 15 mgs. I can tell I need stronger medications, but I am at the limit that my insurance will allow.
I am so afraid that the state I live in, Arizona, will follow in Oregon’s footsteps! I am a Medicaid patient. I want to do more, but I also take care of my 81 year old father 24/7-and with the pain I am in, this is extremely difficult! If my pain meds are ever taken away, I will no longer be able to help him and this terrifies he and I both!
While I have very little extra time to give, what can I do to help everyone in pain?
Wow I thought my problems were bad, which they are but after reading some of your situation s I feel I’ve actually had the blessing of a great pain management doc for many years, until now with the new guidelines, I’m going through the same hell as all of you.
Was emancipated at 15,never had any formal education. After working crappy jobs for many yrs, from age 16, I did vocational schools for a few different skills? Turned out due to allergies of gels, fiberglass and skin care products that this wasn’t going to work. I’m the meantime I did what I could to survive. Roofing, bartending, mostly labor jobs which all took their toll over the years. When my son got older he liked water craft and off roading, dirt bikes, go carts, jet skis, etc. I found I liked the same things so of course we went out whenever we could. By this time I had gotten some grants and student loans and recvd. A certified medical assistance diploma and My stay license. I had already had many incidents of calls and accidents before I got into working for orthopaedic surgeons, a very delay career. I had fallen down steps, slid down a stake case on my rump. Rope swing broke and got me a fractured pelvis, wrist, etc. Anyway, needless to say I have had many instances thru life, too many to list that have caused me injuries and pain. About 1991, still in my 20’s i started getting back pain that was really affecting me. Stayed on track building a career and making good money,I only had to take a few pain pills once in a while. My bosses even helped me at times knowing I was busting my but for them and all of us there had back issues. The others had all been there many years so they tended to disappear when we had patients or the hardest docs to work for. This went on about 4 yrs when while visiting my gun i told him of my back pain. After exams I was told large fibroids were pushing on my spine causing the pain. He recommended I have my uterus removed but keep ovaries. When I woke from surgery I was screaming in pain. The nurse said she had the pca, patient controlled anesthesia was wide open? They hooked up a second one and that was the beginning, when we all realized I had a high tolerance to opiates, well all meds, I always felt. I still had back pain after the 3days and supposed to go home? I stayed another 2days getting my kidneys chckd. Went home and wound up going back the next day because of coughing blood. Found had a pulmonary embolism. 7 more days and many tests, blood thinner for 6 more months and still had this back pain? We had physical therapy at work so I was using it and doing what the therapist said. Nothing helped and I couldn’t do this amount of back breaking work any longer. I was having to take pain meds more and more to get thru the days and nights! I took off several months trying different remedies. I was hired at a job that was more sedentary but still paid good. After several years I was still having alot of trouble with back and now butt. Got my first MRI and there it was. Long story short I had several different jobs trying to find the right best fit. I also while doing that and in between i saw every therapist, specialist, chiropractor, acupuncture, blocks, etc. I wound up being diagnosed with a tilted pelvis, spodolythesis, degenerative disc disease, five bulging lumbar discs, etc. Couldn’t get a surgeon to touch me due to emboli. I continued to try and work and developed sciatica on the right. Couldn’t lift my leg of drive for almost a year the knots in the buttocks were huge and painful. Year later I got it on the other side. By this time I was paying for treatments out of pocket that ins. Didn’t cover. Decided to file for disability. Of course I was denied and there were many other diagnoses listed? Had neuromas in both feet and what they called costo chondritis left ninth rib, painful! I continued to try and get treatment, pain help and appealed disability. No go. I filed again but had to wait for a court date. That was two yrs later. Meantime, I couldn’t keep up insurance with no more income. I went through an indigent program, dealing with prejudice because I wasn’t black. Not being able to get pain relief as I was treated as an addict or abuser, made to go to pain mgmt classes and have more blocks, spinal, before I could get the minimum of meds and they were the small time opiates, 5-10 mgs. Also was paying cash for them. I dealt with that for about a year until someone told me about a pain doc they went to for about a hundred dollars a month, I just had to bring my films, mri’s and records. First doc I saw wound up going into hiding, I think someone died? I was still pretty much taking the lower dose meds but he did give some other stuff for relief. Relaxer, etc. They did tell me the new office , I’m assuming because I was one of the better of legit patients? Their price went way up and that was the end of that. The next doc was always looking up my nose and I couldn’t figure out why and kept asking but he always made a joke about it. Then he wanted me to come to court and vouch or testify for him? I didnt. One more I tried, a woman whom I told one time about some side effects I was having with an anxiety med she prescribed? She said because I wasn’t taking it every day. I asked my long time pharmacist about this and he thought it strange, as did I. I left there. I found an orthopedic surgeon who was doing pain mgmt, had therapy and a research meds program. One of them were for pain meds and I didn’t have to pay anything. They paid me. When I finished that the doc wanted to put me on a time release med, oxycontin. I didn’t want anything to do it and he didn’t want to give meds with the Tylenol in them. said not good for liver? I had tried the oxy thru the mail i think, in the past? I didn’t want to really be on them so I quit and went back to my 10mg, where a nurse came to your house, examined you then you got rd in mail? It took me about 8 months to finally get them out of my system, so of course when I finished the research thing I didn’t want anything to do with that, oxys? Now between him and the next guy I got my court date. After the courts doc examined my records and went in front of the judge, it took less than 30minutes to be determined. I was approved! Yipee, I can get some insurance and see a real doctor again? Not, while I waited for the Medicare I went to one more pain clinic. After the doc got to know me, he kept trying to get me to go back to orthopedic. When I got the Medicare in2005 I went to the ortho who did pain mgmt, took my insurance, had therapy, xrays, etc. Actually I was hurting so bad one night that a friend came and said she was going to take me to her doc and he would take care of me. He waited til after five for me and low and behold it was the same ortho surgeon that did pain mgmt. I started on the oxycontin that night with some breakthrough meds to boot. I felt great, my insurance paid. Everyone I knew, pharmacist, etc. That watched me go through this all these years were happy for me. That was 2005. Remember I started this in the early 90’s. I’ve been with him ever since. I’ve never had a dirty urine. Never short on my counts. That is until this month. He started weaning me off because of the 2019 crap, didn’t want me to go through all of it at once? I was 11 days short on breakthrough meds. He did take care of me, I believe he knew that I was really doing my best and was just coming down too fast, too hard. I’ve been with my husband 33years. He has driven me everywhere, does the shopping, etc. I’ve been talking care of my mother in law for last 7 yrs. She’s 96 with dementia and all that stuff goes with it, dialers full, etc. The last few months I am barely able to care for myself let alone her? My husband can’t go to work, almost 3 months now so no income there? He has to do everything I can’t which is just about everything. We argue all the time due to stress. I used to be in the yard, garden, take dogs out. Now I don’t go outside, not even to the mail box. I love or used to love to read but can’t hardly do that anymore because I can’t concentrate on what I’m reading. I lay in the bed, count it the bed until I can take another pill. Even when I did have sufficient meds, I still always had pain but it was manageable, not anymore. The two yrs I waited for that disability court date, I lost everything. My car, home, savings, 401k, etc. I feel like I have ptsd, that I’m starting way back at the beginning, after all those years of suffering. Now here I go again but now I’m 59 yrs old with alot more pain that is magnified when coming off my meds. The only thing they do for me now is keep me from being violently ill! So now Medicare will pay less to keep us from detoxing but there is no point to life living this way? It’s just not right. Why does the government insist on controlling every single aspect of our lives? All the ppl overdosing I believe are going to pull mills, taking benzodiazepines with pain meds, getting them online or buying from others who go to pain pill mills or get online? The reputable docs don’t just give out meds, I knoe, I suffered many, many years. I went through hell on top of all that. My doc i believe is legit, I’m legit and My of is. So why is my doc doing this? Why is he taking all my meds? I can’t find a law anywhere that says legit chronic pain patients have to be at 200mg or less? It’s not law but a guideline, a recommendation! You are so right. Why are we being penalized? This really sucks giant bill balls! I hate the government for ruining what it took me My whole life of fighting to achieve. Even when I was down I kept fighting. What really is the point anymore? I’m tired of fighting what seems to be a losing battle. No matter how far you claw your way up, the government just knocks you back down. If it weren’t for my family I would’ve ended this already. Maybe they’d be better off not watching me suffer and go through this all over again. We haven’t had a cost of living raise since Obahma took office, now this. What’s next? Can’t buy a house or get a mortgage if you’re under five feet tall? Just as stupid, penalizing ppl for something that is not their fault! Boy I feel better getting that out. Thanks for the ear people. Dang it my butt, etc. Hurts. Pardon my typing, it’s from a tablet, I cannot sit at desk. Probably doesn’t matter cause I probably have to sell it and My computer. CRAP!!!
This is to Sheri owen, who lost her brother, I’m so sorry. About the illicit fentanyl? Right on sister! My brother died of alcohol poisoning so is the government limiting people’s drinks to only two a day? Got to get your drink or alcohol card punched at the grocery or bar? What a bunch of garbage. I personally think that all the pill mills giving all those ppl loads of benzodiazepines with their morphine or hydrocodone? Those are killers, giving ppl 2mg xanax who never ever took it before because they say they have anxiety? Go to sleep, never wake up? Loved your post. Tee p.
After several years of being able to be comfortable and have a bit of quality of life since spinal injuries in 2000 , a vascular necrosis in 2007 and a brain tumor,,,, the CDC steps in along with the DEA , now my pain management doctor is cutting everyone down off their meds due to he feels the need so he can keep practicing medicine without the scrutiny of the government or having his license taken ,he told me that government and insurance companies have no business telling him how to manage his patients . it is a terrible thing for those of us who doesn’t take our meds to get high we take to be able to function.. doesn’t matter that we have all of the the proper documentation ( MRI’s) .. it’s the most inhumane thing … suicide is rising due to people being taken off their medication.. it’s all a ploy by the government to give the cartels the lead.. they just want to kill off the sick and disabled.. what bothers me also are subutex clinics popping up all over in the area I live .. it is ridiculous..
Hello. I’ve been wrestling with chronic pelvic pain for 18 years. Fun, fun! During that time, with the help of pain meds, I managed to live a very productive life: raised and homeschooled two kids with my wife, start and ran a publishing company, ran a tutoring business. Now, with the cutbacks, I have become much less productive, more worried, more depressed, and now with the insanity of the 90 mme threat, I’m scared for my life. Thanks CDC! Thanks media hysteria! Something needs to change. Thanks (for real) to Don’tPunishPain. The world needs fighters, and this is the time to fight and to NOT go gentle into that good night. So let’s all get up and rage, rage against the dying of the light. I’ve also written a series of poems about my pain, what it’s like to have this f-g pain, what it feels like, physically and emotionally, and I’m wondering if that might be useful for conveying to the public what the experience is like. I feel like the poems have a weird way of getting that across.
I have bin in pain management for 8 years now I need to shoulder replacements and no dr will do it because iam
To young also have fibromyalgia a bad neck and knee issues do to a car accident I applied for disability and received it the first time myself at age 33 no issues if one can’t move there arms what kind of work can they do I don’t drink I don’t abuse my drugs iam a mother of 2 kids and I need my
Meds to function like a normal person life is painful every day I have good days and bad days but without my meds which took
Year to get the dose right now iam being told by the government that I can’t have them because other people abuse them I do everything right have had the same drs for years and because my
Number is 235 the state say my
Number has to be 99 if this law
Passes there are going to be more deaths and more abuse this will ruin my everyday life and my kids life’s because I need my
Meds to do the extra stuff with my
Children it’s a share the world is coming to this because other people abuse them why can’t they grandfather in the people who are on meds it’s just sad that people who need them
Can’t have them
Now do
I have to move to another state to live a normal
Life? Please help us who are in real pain now my
Dr tells
Me
To try
To deside what meds will left me the most come Jan even my
Call 2 I can’t have that also help I don’t take over
Amounts because my
Long acting work just as well
I have impinged nerve root, arthritis in feet, degenerate disc disease
I’ve been told the impinged vertebrae will get better, my stress causes my pain,
Some days I can not walk
But ……. I could cry when I’ve read some of the stories of ones in pain
I feel it is criminal to take pain medication away from ones suffering.
As I write this, I’m glad I’m 78 because my pain will end before long.
The veterans being denied pain medication for injuries they got fighting for our country
Be real , you politicians, if world still here in 50 years , this will be looked on as a dark time in our world
Are the politicians in pain b denied pain medication, I would bet not.
I have a severely damaged spinal cord from a botched back surgery. Before my surgery I had some of what I thought were painful days stemming from lumbar disc problems, I was still highly mobile, active and working full-time doing lots of physical work. Now, I have been reduced to being bedbound most of my day. The pain levels I experience now are exponentially worse than what I used to think real pain was. Without powerful opioids, I would be a useless quivering, crying lump of a person with no hope of any physical movement. My unchecked pain would render me unable to perform the most basic of everyday living, with no desire to see another day.
From “his” wife. A letter just written to a pain doctor in SF CA. I have not slept in 48 hours.
Hello Dr. Fields. I am seeking your advice help for my husband. We live in Arizona we will be going to Northern California in a couple weeks to visit my family if I can get him on the plane. My husband who’s had failed back surgeries and then legally disabled and in pain for 12 years at 57 it’s now being tortured in Arizona. I am afraid. He’s only had one pain doctor since we moved here 9 years ago. Pain doctor closes doors a few months ago. Nobody wanted to take Dr Bo McClain’s patients but we thought it was a godsend that he found a doctor not a pain specialist in a strip mall in Surprise Arizona that agreed to continue his long-term chronic pain management until 2 months ago she said she needed to start reducing it. Mind you he was at the point where the doctor thought he should probably increase it but my husband knows there’s only so far to go with it. He’s on pain patches and changes one out every night. And still that doesn’t even take away his pain it only dulls it. His quality of life is still not good but we’ve been managing I don’t know what we’re going to do now I’m afraid. My husband is not a weak man but this made to him in, our family. I can’t even believe I’m saying this about my husband. This new doctor continued the treatment protocol the prior doctor was doing until 2 months ago she said she had to start reducing it out of the blue. She told him not to worry just go 2 months with her reducing the 25 milligrams and then she give it back to him last week. When he got there she said no I’m not giving it back to you in fact I’m going to reduce it more right after Christmas. Oh my gosh I don’t know. I don’t know what we’re going to do. My husband was so upset when he got home . If it wasn’t bad enough his quality our quality of life before, this is going to get even worse in a way I can’t imagine. His primary doctor says she doesn’t even know how he gets out of bed . And it’s always been the steady Rock. I’ve never seen him cry but once when his father died in 13 years. But I heard them twice already. he says he’s not good enough for us. He needs to just let us go. So we can have a life which is ridiculous we’re having a life without him he’s the best daddy in the whole world so I like to know what everybody else is excuse is.
He’s already lost another 10 lb, he doesn’t hardly sleep or eat. That’s the way it was before. Now it’s worse. One doctor Dr. Bo McClain a Surprise anesthesiologist, has all his records. It’s almost 2 a.m. here now I didn’t sleep the night before. And see we have a 12 year old son we’re 57 and 56. Our son is in the Spectrum so I had to be the mom Warrior for him and I was and he’s just fine he’s in a private Christian School. But we don’t have any family no one to take him out of this and my husband is just not himself. I don’t know what’s going to happen. I’m just searching for someone that knows that this is not right and can help in any way I referral to someone that will help him and he’s off for getting off the pain meds if you know what treatment would have done it all he already was tortured 12 years ago and he’s worse . No one has ever been able to explain why his feet are always cold and you can’t touch them or her go through the roof . They did all the nerve test and I came out with nothing the only thing we suspect is he makes excessive amount of scar tissue when she found out when he had melanoma in his arm and they took it out on the scar the amount of Scar that develops on top of arm was not normal . Weird unsuspected that’s what’s going on in his back to . Dr Bo says has pains worse also because his spines deteriorating and it’s all arthritic up and down his hips and shoulders . We they have tried everything. He was hurt at work working for a state this state did this torture to him for a year during lawsuit because they did not want to admit that my husband Rod was permanently disabled and in pain from two failed surgeries. That didn’t have to be they pushed him back to work in 6 weeks. The lawyer told us he should have been back to work for a year. He rupturedagain and the rest is history. They tried every drug under the sun. Epidurasl don’t Help. Any other procedure they’ve done doesn’t help. We even spent last of our savings on an experimental procedure Dr Kevin pauza with the spine and joint Hospital in Tyler Texas was doing. He thought he could reduce rods Pain by maybe 40%. Yeah reduced it but it was very short-lived. When it was reduced he asked his doctor to reduce his fentanyl patch amount. My husband doesn’t even like drugs. They’ve already tried everything, the psychologist, candidate for the stimulator no and everything has been tried. That state he worked for did not want to concede that Rod was in chronic pain and there is absolutely no work he could do. He applied online for disability from the government and there was a check in the mail with back pay within 3 weeks. His lawyer said he’s never seen that in his life. I’m sure it helped that I took thick nicely organized stack from the lawyer in with all Rods records and dropped it off the next day out the Social Security office. All they had to do is look at that and he was awarded in fact we had a check in the mail before we had the award letter. That has to mean something. I wish there was something that would take away pain. And so does our young son. He wants to know why God doesn’t heal Daddy. I don’t know what’s going to happen to us my husband’s decidiste ho I’m stressed out trying to support us as a realtor he’s not in a position to do this for himself so I have to do this to I have to find somebody. None of the doctors want to take on anybody all I rod. My only thing I’m working on is finding someone like you locating is dr. Bo McClain anesthesiologist and asking him to write a recommendation letter 4 rod if by some chance there is a doctor somewhere here that is treating chronically ill patients like rod if we even have a chance we have to have something from dr. Bo McClain this new doctor turned on him and now is treating him like a drug seeker. This is very serious. Now we don’t have money I will find a way I like I always do. I just so happens we are going to be in Northern California December 19th through for 9 days. I also need to add. My husband has always been resistant to pain medication. His mother was a nurse and she told me that one rod was a child he required three times the amount of Novocaine to get numb at the dentist. I had DNA run on him and a report that shows he has the gene that gives him increased pain. Also when he was getting procedures I had to insist they know. They needed to make sure that Rob was out before they started to do procedure on him the first time they did. The second time the assistant then didn’t listen to me. He woke up during the procedure and they held him down to finish it. Insisting he was not awake while they were holding him down and cutting on his back. He remembers every detail. So I’m sure you have a lot of people that need you. But we need you my husband even if you could just call someone near to us that’s closer that will treat Rod and if there’s something that will help them that would be wonderful but I don’t know what’s going to happen if this pain is not managed right now he can’t go a day without eyes and we can’t questions doctor she may not give him his medicine. These this bad being reduced 25 mg oh my God. So where do I go where do I take Rod?
Thank you. Please advise
What a journey living with chronic pain since 2007. I am a master’s prepared RN with a 44 yr. Work history, I loved every minute. I have endured 4 back surgeries, 22 epidural, faucet injections, placement and removal of a spinal cord stimulator. It’s ironic, in 2002 I was teaching chronic pain classes to caregivers. I knew the statistics of people with chronic pain, but in the back of my mind I thought, why don’t these people just buck up? Now, I know!
In the mid 90s I was President of the Oregon State Board of Nursing. Approximately in the early 2000s, the Board mandated that ALL nurses attend a 8 hr. CUE in treating chronic pain. The classes were taught by Purdue. Makes one wonder why a clinical class was taught by a sales rep.? The theory was to just keep increasing dosage to cover tolerance. We all drank the poolside.
Staring in 2009 I found the ONLY thing that gave me somewhat of a functional life was opioid. I have since taken them as prescribed. The access to pain meds has evolved into nothing short of a degrading nightmare. I live part time in 2 states. My physician in California is caring and respectful. Whereas, my physician in Oregon has me reigned in so tight…..monthly urine, monthly appointments. It is degrading and highly embarrassing. Perhaps he is in fear of his professional license? The practice management between the 2 states is like night and day.
The access to medications are problematic as well. Sometimes the pharmacies are out and won’t get another shipment for 2 days. Since you can’t refill early, your solution is to lay in bed detoxing.
Without pain medication, I know I’d be bedridden, clutching my Bible praying for relief and a miracle.
I understand the opioid crisis. It’s dreadful. But please please don’t punish those of us who are compliant. Please give us better access to medication. Would you deny a diabetic their insulin? To individuals in chronic pain, opioid are our insulin, it IS life saving.
Thank you for this platform to express our thoughts.
I have been a chronic pain patient fir 15 years and this year has been the worst. I had to have my pain pump removed due to a catheter break and subsequent Meningitis. I then fell under the new guidelines for opiate Usage . I was rapidly reduced from an Intrathecal dose of 1000 mgs to the maximum oral level allowed in Arizona. I have always followed the rules, but this is the worst. I now have a compromised spine with a retained catheter due to it being scarred in, failed laminectomy syndrome, herniated discs, osteoporosis, degenerative disc disease, bone spurs plus a chronic digestive disorder and immune system problem. There is nobody who wants to help as I have been classified as an addict. They can’t increase my medication due to fear of losing their license. Where have physicians and this country gone in “ First do no harm” and the violation of my rights to be taken seriously and humanely. It doesn’t take a scientist to see what may happen next.
I was a successful teacher of 21 years when I developed degenerative spine disease which progressing to 4 spinal surgeries, a failed fusion, and unrelenting intractable pain which made it hard to get out of bed wash my hair or to do much of anything except pray to die. I tried to kill myself a year after my final spine surgery. I did not want to live anymore. I could not walk, eat, or sleep and was slowly dying at age 48. I finally got into a pain clinic which saved my life. I now have a pain pump and take oral opiod medications that give me back some quality of life. I can help with my grandson on the weekends and make a meal and go grocery shopping. I am very grateful to have found some relief. I worry everyday about not being able to afford or get my medications. It seems to be trending to blame drug companies for all of the addiction problems people have with the medications I am on for pain. People do not see the people who really need these drugs to live. I would love to go to treatment and get off them. I do not have that option since that would be a death sentence for me. I feel that intractable pain patients are being forgotten and that no one understands that there is suffering out there that requires opiods. It is inhumane not to treat this type of pain and it can lead to a premature horrible slow death if not diagnosed and treated properly. We treat our pets better when we see there suffering. This extreme reaction to the opiod problem is causing inhumane treatment of those who truly suffer. Many who are addicts do not get their drugs from doctors. I don’t see allot done with illegal drugs. It is easier to go after well meaning doctors and hospitals instead street drugs. I agree there needs to be monitoring but drugs are being withheld from dying people in pain.
headaches have ruined everything and recently moved to a different state so the ” doctor ” here thinks after years of being on medications that i obviously don’t need any of them ??? the guy treated me terribly and made me feel like pain is a sign of weakness and because he went to college to be a doctor he is automatically better than me , a failed surgery in 16 by a different doctor has taken me to a place i’d never thought i’d be …. completely done don’t care about anything i’m not a person anymore i’m a headache , what is so cool is there is zero accountability in the medical community the doc that did my surgery won’t respond to me or see me and any ” new ” doctors automatically don’t want to take on my case this is horrible and i’ve helped others in my life in 03 i gave away a kidney to help someone … so anyways thanks for taking the time to read if anyone has any ideas feel free to comment !
Hey pain patients. Any sites that anyone finds that we cpp can get our plight through to Washington, please let us know? I’m listing my name and email,I don’t check it often and use it even less but I will definitely make a point to check it and see if anyone has any sites that I can pass on to get us heard. I don’t want to read about any more dead people who are gone because they couldn’t live with the agony? Especially me, because the only thing keeping me holding on is my family, my doc and the belief that the government will see the error of their ways and the belief that any human being, after knowing what is happening with the legit pain patients will cease to let it continue? We all know what the deal is so I’m not going to reiterate. I know it’s really, really hard when you are in debilitating pain with seemingly no way out! Every minute feels like an eternity!! If anyone knows of a news person that does human interest stories, especially in Florida, let me know. I can’t give up because I don’t want to die but I can’t live with this pain and suffering, the inability to care for myself or my home, family and pets. I’m fortunate enough to have been approved for disability benefits back in 05. Only took two years for a judge and with all the treatment and expenses prior to that, all toled, cost me literally everything! I lost my house, auto, insurance, 401k, savings, etc. I didn’t think I would have ever made it through that, on top of fighting with medical people and facilities trying to get pain relief!! After spending half my life going through all that, being as miserable and suffering as much as any human could. Like being tortured and fighting the enemy for your release. They just continue to laugh at you until you are basically just existing and waiting for death!! I know alot of us need our meds so we can do our jobs and have any kind of desperately needed income! There is another thing the government didn’t think of, all the cpp that will be going on or over flowing the system and courts, who are already yrs behind, trying to get on disability and or state and government assistance. All the medical costs the Medicare and others will be racking up! The list goes on and on. I’ve listed so many issues that are going to affect government negatively that they have not thought of on top of what they’re doing to us. We can’t give up! I for one had a decent life before this even though I griped all the time about stuff I could do any longer! Now I just wish it would be like it was before all this crap happened, through no fault of the legit cpp. Don’t give up,I need you guys on pain news network, to keep me motivated and not give up myself! I don’t know if this site will be read by anyone who cares in Washington? I doubt those responsible for starting and pushing all this are going to voluntarily read anything that has to do with the huge mistakes they’ve made?? They’re not going to admit anything or wrong doing or inaccurate facts, statistics, etc!! Need to get to the President, republicans, DEA and the AG! Since Sessions is gone, maybe we can get someone in their office to understand how detrimental this is to so many American citizens?? Hang in there folks, I feel you, are right there with you. Some of us worse than others but we’re all on or in the same boat fighting for our lives, literally. Ttfn, Teri. 😕😢😣😤 Don’t or try not to be crying because they don’t care about us! We have to get mad and more, let them know that there are too many of us who are not going to tolerate the government taking our rights and we’re not going anywhere!!! We are not going away and we will be gathering in front of the white house, talking to the press and anyone else that will listen and spread our message, educate the folks who think legit scripts are killing their loved ones. I don’t believe those ppl wanted this, especially with no results on the true culprits!!
I was diagnosed with rheumatoid arthritis and spinal stenosis in 2008. I have been dealing with the pain not being able to walk right or lift things. I am raising my granddaughter and in 2008 she was just three years old. I was so sick that she had to go stay with her mother in a program. Naturally the program really changed her at 3 years old. Now 10 years later I went into the hospital for a dental mess up and two days later found out that I have stage 3 cancer. Colon and ovarian. I have a good doctor and I told him I just wanted to see my granddaughter graduate. She is 13 so she still has four years of high school. He seems to think I will be okay and everyone has been upbeat in the office that I go to. It’s called C-care. So far so good. They do all the treatments in the office and that’s that’s good.They can watch and see how you’re reacting. I don’t have much hair left because of the methotrexate that I had to take for my rheumatoid so I’m hoping I don’t lose too much and if I do I’m hoping I can find a suitable human hair wig to cover up my baldness. I pray everyday and other people have prayed for me. I’m keeping the faith.
I am a 52 year old chronic pain sufferer due to multi-level DJD of the lumbar and cervical spine. I’ve been living with pain for roughly 10 years. Ironically, I was in the best shape of my life when my chronic pain started, and 40 pounds lighter. My back aches constantly, no matter the position, my thighs ache all the time when I’m sitting, and my feet cramp up many times a day and night. It’s impacted all aspects of my life. I constantly have to think of where I’m going and what the set-up is like when I get there because I can only tolerate sitting or standing for short periods. The medications cause side effects that are no fun to deal with, but when you have no other option, you deal. Imagine dealing with that non-stop for 10 years. I believe most people, intellectually understand what it might be like to live with chronic pain, for such a long time: not too good. Sadly, no one has a clue what it’s like to live a life of chronic pain, unless they’ve experienced it themselves. The emotional toll it has taken is significant: depression, anxiety, suicidal thoughts, and fear have all been frequent ‘visitors’ throughout this journey. I have a wife, and two children who need me, so I plug away, working a full-time job, up until recently. I can’t get through a full week anymore because of the pain. Mind you, this is all occuring while on pain medication. The pain is still there, but at least I can work most days because of the medication. I’ve been through all the conservative measures; ultimately, the only thing that gets me through my day and allows me to work, is pain medication. I’ve consulted with a surgeon who suggested that he could fuse my lumbar spine (3 levels); however, the chances of having a good outcome were poor. He stated: ‘that if you were my brother, I would recommend not getting this done.’ It was his suggestion to try a pain pump and buy myself some time until the surgical technique/technology improves. Fortunately, I was a good candidate for a pain pump (not every chronic pain suffer is) and eventually got one surgically implanted, but I still need oral meds to get through my day. My pain has improved, with the pump, and my life is okay at this time, but I’m not the same happy person I was ten years ago. Chronic pain sucks! And unless you’ve had to bear it’s life-sucking misery, you just don’t get it. The opioid epidemic is a joke based on poor statistical analysis, data collection and poor research. You might have heard the expression: there’s lies, there’s damn lies and then there’s statistics. Well, as far as the opioid epidemic is concerned, the statistics that are constantly thrown around are laughable. It’s very easy to twist and tweak, the stats, to tell any story that one wants the general public to hear. No doubt there is abuse, misuse and diversion, but there always has been and there always will be. FYI opium has been around for literally thousands of years. Opioids are tools, just like any other drug that a physician prescribes for a patient. **NEWS FLASH** people abuse and misuse them all the time, but I don’t. I would venture to guess that most legit pain sufferers are just like me. I’m no stats expert, but I’ve taken it in college, and I know how easy it is manipulate numbers to tell any story you want. Understanding and interpretation is a whole other animal. There is so many well educated, smart people, who do not have the proper knowledge, when it comes to statistical interpretation, giving opinions on important issues like this, and they should just keep their mouth shut. Any arbitrary cut-off that implies there’s no benefit above a certain threshold (I’m talking about you 90 MME) better be based on solid research. It’s mind boggling that important regulation and policy affecting so many people is based on such weak research. But we gotta do something-right? No, we don’t until we have enough good info to make a good decision. That’s why doctors have licenses and years of training. It’s amazing to me that the people who actually know what their talking about aren’t being asked what to do. I can attest to the fact that there are many people who live far above 90 MME per day and are perfectly fine. Anyone with knowledge of the pharmacology of these meds knows that to be true, and knows the difference between physiological tolerance and addiction. The opioid epidemic is a complex issue and will not be solved using arbitrary cut-offs and weak science to curb it. There are many, legitimate, hard-working good people who suffer in silence every day with chronic pain and to ‘cut them off’ from something that can literally save a life, should be a crime. I consider myself one of the lucky ones with chronic pain. There are so many other people, that have medical situations worse than mine, that can’t get out of bed without having access to these meds. Your friendly Pharmacist, Physical therapist and chronic pain sufferer all-in-one signing off.
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
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.
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.
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.
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.
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.
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
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.
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.
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
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I was in a motorcycle accident where I was hit by a speeding driver on the freeway. I broke or fractured 9 ribs, 5 vertebrae, my pelvis and my right arm. I was air lifted to La Jolla. As a Father and husband I could not take the 8 to 12 months to recuperate. I had to support my family. and pain medication got me through my job. 6 years later I had my first laminectomy where there was damage to the nerves followed by additional surgeries. I now have very little feeling in either leg, my cyatic nerves in excruciating pain round the clock. Where I can work using a cane to prevent my falling which happens daily. Most companies don’t want to risk hiring me and yet I still need to do whatever I can to support my family. I sleep perhaps 10 hours a week with out medication. This is certainly not the kind of life I imagined. I have a full gym at home to get me better but can’t use it without supervision. So I sit. I sit and watch my son grow up without me. I watch my wife become the mother of my son and not a wife. We sleep in separate rooms because of the pain and constant moving to get somewhat comfortable. These pills do not get me high, they do not make me forget. They allow me some amount of dignity by suppressing enough pain for whatever amount of time so that I can live what little quality of life I can.
Stage IV Breast Cancer with Bone Mets. Believe me, tumors growing in your bones hurts. Pain Pills are the difference in writhing agony and a productive day. My insurer only covers so many milligrams per month and I pay out of pocket for anything over the arbitrary “approved” limit. Many friends and family have asked if I get high from my pills. Pain pills do NOT provide a high for people who need them and use them as prescribed; it’s a common misconception.
I’ve been a CPP for 13 yrs now and have degenerative disk disease. I’ve had 4 neck surgeries and I’m facing more as this disease is progressive. I’ve been going to a wonderful pain clinic here in Sacramento but lately I’ve been forced into a rapid taper down program that’s been hell. I’m so scared for my future pain control as it’s rapidly getting out of control now. And I’m tired of being treated like I’m a junkie by some pharmacys and the government a!! We just want to have some semblance of a quality of life, we’re not abusing these medications, selling them, or doctor shopping, so why should we be punished like we are? It’s not right to punish the law abiding patients in an effort to combat a national problem. They’re going after the wrong people and are doing irrevocable harm! I don’t want to end up as a suicide statistic because my pain was too great to cope with.
I have been a Pain Patient in a legitimate Pain Management Facility for 12+ years.
Due to the CDC GUIDELINES, my doctor did a forced taper of my meds in June 2017. By Dec. 2017 my meds were lower than ever.
I am now only receiving less than 10 percent if what I was prescribed 15 years ago.
I just found out about this organization and thought my Doctor was following a law and I had no options.
I have developed a heart condition. I went into cardiac arrest just 6 hours after leaving the hospital following a total hip replacement surgery in October of this year. 2018.
I had no clots. just unmanaged pain from the surgery.
Now I am waiting for a defibulatir , while wearing a vest.
The forced taper is, in my opinion has been caused by unmanaged chronic pain.
We must win this fight against legislature that is crippling our Doctors who are trying to help is6.
I was diagnosed with fibromyalgia back in 2010 and I’d been on opioid pain meds for years. Here in NY, iStop completely changed the whole system, monitoring what doctors write and where. It’s at the point now where it’s impossible to find a doctor for treatment. They put you through all of the tests over and over again and even at the end, they try putting you on Lyrica and other drugs that have far worse effects on the body and mind. I had tried everything from acupuncture, meditation, chiropractors, and the only thing that ever helped me was opioids. Our government allowed free circulation of these meds, only to abruptly take them away to the extreme and punishing those who try to continue treatment that they know helps them the most.
The MSM and our gov has run with the buzzword “Opioid Crisis.” It has the masses in fear, thinking fentanyl (which only arrived a few years ago) is the same as all other opioids. Almost all opioid deaths are from mixing them with a myriad of other drugs. Even addicts know what they’re getting into. You don’t mix drugs, or risk death. The misinformation, fear and most of all, the continuous war against patients, must end NOW.
It gives me hope to see others waking up to what’s really going on here. If the WoD was truly meant to be won, then we would go the way of Portugal and decriminalize and put money into TREATMENT and NOT incarceration. Taking legal and regulated opioids away from patients has created a market for unregulated street drugs and criminals, leading to deaths, addicts, and chaos.
I am also a chronic pain patient. I have a debilitating disease that is not curable. For a few years I have been put on medication that has put me in a controlled state. As long as I took my meds at the right time I could be at a tolerable state. I never misused my medacine and I have always followed the rules. When I went to my doctors I was told they are not making my medacine anymore and they put me on a less than adequate replacement. This was all done in the name of “fighting the opioid crisis”. All my symptoms are coming back and I really am looking to soon not be able to do simple things people take for granted. I love life and have always thanked God for all of my blessings. I do not understand why I am being punished for people who misused their pain medicine. I could not do things before they figured out my dosage, but once they did I felt like I was like everyone else in the world. I am now getting worse. I feel helpless and without care. I do want to add I have great health coverage and I have always paid my taxes. I volunteered on my good days to always pay it forward. Who is going to speak for me on a simple quality of life Issue? Thank you for listening, Penny Alles
In 1983 I slipped and fell while stepping from a high dock onto a boat, landing on the boat edge on my left knee. All my weight plus an arm full of items causing my Femur to be pushed into my hip joint. I had 2 disk ruptured and a damage Siactic nerve in my left hip. After 2 surgeries to fuse my lumbar my pain never ceased. The nerve damage was found by Nerve Conduction Study……awesome but there is no fix or cure for a damaged nerve.
I tried every available option to control my pain but an opioid meds is the only thing that helps me make it through my days and nights.
Now my meds are cut by 2/3s, I suffer constantly. I’m glad to have the meds I do have but this is so inhumane to treat chronic pain patients like addicts.
I am a CCP of 16 years after an accident at,my job where I saved the lives of several. My meds have,allowed me to work again after 3 years in a wheelchair. I am a productive citizen, I am able to play with my grandchildren and have somewhat of a social life. My meds keep me mostly comfortable but it is a daily battle. I had a,spinal cord stimulator until it got infected last year and had to be removed. My Dr. Is tapering my meds. When I get farther down I will lose my job, my home and ability to have a life. I know I can’t live in the ER or at my doctors office. This is the first time I have ever thought about suicide. I want to help change the law to where we can have the meds our doctors think we need and keep the government out of our doctors offices. I am upset about this everyday. This brings on anxiety and depression that contribute to pain. O am truly terrified about what is yo jappen.
Damaged my spine in the late 90’s. I have pedical screws. My lower back hurts so bad always. My sciatic nerve hurts like fire . Speaking of fire, fibromyalgia burns it’s way down my back, arms, hips and legs. Now that I’m off all my pain meds, I stay in bed or on the couch with ice packs or heat packs. I take tylenol. It doesn’t work. But I take it on the off chance a miracle occurs. My liver has been objecting to the high doses of tylenol.
I object to not being able to move.
Maybe some members of government want to get rid of people on SS or state/ federal retirement. One senator stated the the elderly was the biggest drain in the state!?
I wonder what will happen with all that free narcan? I’m sure someone will find a way to make an illegal drug out of it.
Or maybe someone will make a mint selling off the free needles only junkies can get. Gather them up and sell them overseas. What a haul!!
I don’t think diabetics get free needles.
Whoever thought up the cure for the opioid epidemic, didn’t think it through. So, now thousands of people have to pay, via suffering, for those that were not compliant and ended up well having a bad outcome.
Yes, I have lost loved ones to addiction, but we should not have to suffer any more thsn is necessary.
After being on a strong pain med ordered by a pain specialist, I was handed a sheet of paper on my way out of the office. It said I would not be getting my prescriptions ever again.
These are meds that cannot be stopped cold turkey.
My doctor did not return phone calls and the office people actually snickered at me when I would call to find out how to decrease the dosage.
OK. I figured it out by looking online.
My doctor called me after three months to get me admitted to a hospital. But I was already off.
I’ve been stage 4 cancer 4 * I’ve had 10 surgeries radiation the war on opiates is hitting the people that really need it the most everybody I know at the Cancer Center and Pain Management has been cut back on their pain meds not fair to the people that really need it no quality of life in Indiana
I have been on every sleep aid since I was 31. I am now 62. I have severe intractable insomnia. My dad had it also. When I went in for my sleep study they said I was the only patient that never went to sleep. With medication I can live a pretty normal life. Without it I am unable to function. Ativan is the only med I can take that works without side effects. Without it I have no quality of life and my heart will actually go out of rhythm, as I also have heart issues. My doctors over the years have all been caring supportive and intelligent. I moved to Indiana recently and could not get a psychiatrist without a referral so I went into a family doctor and told her I needed a referral to a psychiatrist as I had moved from out of state and enough meds just to get me through till them. She treated me like I was asking her for heroine and needles and then the office manager attempted to give me information on an emergency department. I said I didn’t feel that should be necessary and she threatened me by saying if you refuse to take this information I will write this up in your chart. I was stunned shocked depressed anxious and afraid. Oh yes and this doctor also took thirty minutes out of my time going over every other possible medical issue I had. When I booked the appointment I told them specifically what it was for. After going over every possible other issue she said I guess we are done. I said I came in for a psychiatrist referral so I can get my meds and I need some meds until I can get into the other doctor. I am moving here from out of state. She said you have a few left you can make it, cut back. She then said get your own psychiatrist. I said I tried calling about 30 of them and they all said I needed a referral. She says ok I will get you one. The next day I got a phone call from her office giving me the name of a psychiatrist and phone number. When I called they said they could get me in in two months. She did not even help me out. I insisted before I left her office on receiving discharge notes which they would not provide. I think because I am a registered nurse and I told her she was treating me like I was attempting to get illegal drugs off the streets that a couple days later she did call in a months worth of medication and I did find a psychiatrist who would see me and that staff were very amenable. God provides. So I have an appointment in a month and I think I will be ok. This is no different than treating someone with heart disease or diabetes. Since when did politicians go to school to be doctors. do they have a degree in medicine. Are they allowed to treat patients. or limit patients treatments. They have no degree in medicine. Pain and insomnia are some of the top reasons people go to the doctor. There is sciatica pain that runs all the way down the legs. sickle cell anemia is one of the most sever pains along with shingles. there is chronic back pain and neck pain there is phantom limb pain when people have lost a limb. tmj pain and tooth pain, cancer pain, carpal tunnel pain. How can politicians with no conscious and who do not have to be in the same room with these patients have the audacity and lack of conscience to tell doctors how to do their jobs. Here is my story on pain: I had crack my thorax open heart surgery at 54 years old. Post operatively I had searing burning pain in my thorax for six months. I cried and prayed and tried to sleep for six months. I would have committed suicide I am sure of it. After six months the cardiac surgeon didn’t really believe me but he did an mri. He asked me if I was allergic to nickel after the mri. I said severely allergic. He said your entire thoracic area is inflamed. I used nickel to close up your ribs. He had to go back in and take out the nickel. It took six months for the pain to cease entirely. I didn’t take much pain meds during that time because they didn’t seem to help. but if any kind of medicine would have helped I would have taken it. migraine pain! I get those every six months or so and go into the doctor and get a shot of toradol. a half hour later the pain is gone. It is one of the best pain relievers on the market. I no longer practice nursing. But I can not imagine working in an er today and telling someone with sickle cell anemia or pain from a traumatic injury or migraine. sorry iv meds are out because the governor who has no medical license or medical experience and has never looked at a patient in severe pain has decided to tell doctors how they can and can not treat patients. Please will everyone speak up. Those in pain and insomnia and anxiety patients and their family and friends. SPEAK UP LOUD because the suffering and severe depression and anxiety all these patients are going through because of these un medically educated politicians is unspeakable.
threatening doctors with losing their license or possibly going to jail for treating pain anxiety and insomnia. These are serious issues that require treatment. The politicians are leaving these patients no options but to attempt to get drugs on the streets or suicide. All you are creating is a situation where drug dealers will become more prevalent and take advantage of these patients and patients have no idea what they are really getting on the streets. Can you imagine a diabetic going to the street for insulin a heart patient going to the street for cardiac medication. Pain patients are some of the most vulnerable patients in the system today. these politicians need to spend a month in the emergency room and watch doctors who are afraid to medicate patients who are screaming in pain
DH has had 5 spinal surgeries (3 fusion & 1 failed) and has degenerative disc disease. MRIs show nerve damage/entrapment, additional herniated discs, bone spurs & extensive scar tissue (making him not be a candidate for injections, stimulator or morphine pump). Surgeon says additional surgery would not relieve pain.
DH has “played by the rules”….1 pain dr (made all appointments, etc), 1 pharmacy, no early refills, etc. Recently, the pain management doctor he’d been seeing refused to prescribe unless he continually received injections —citing new laws (he did 1 & was in such excruciating pain he nearly ended up in ER). He’d already been tapered down to half of his dosage from a year ago.
New doctor said, after reviewing MRIs, that medication would be the only treatment for his pain. He went on to say that, even though it is the only thing that would help to treat the pain, he can’t prescribe because of the new laws. He apologized (said he had to have this conversation daily with the new laws) and offered suboxone. He said the suboxone would help some with the pain, but he would still have pain. Unfortunately, the government does not care if people are in pain according to the doctor. He said the government is forcing doctors to cut off patients from opioids or risk losing their licenses. He said 10 years ago, he would have been accused by government of malpractice for not prescribing, but now is told he’ll lose his license if he does prescribe—said he hates it & it’s not right, but his hands are tied until laws change.
DH doesn’t usually cry, but I’ve found him sobbing because of fear for his future & the future of our family.
I’m a chronic pain patient. I was diagnosed with chronic rhumatoid arthritis, lupus and stage 3 lymes disease
I used to live a quality life, physically able to function without the debilitating pain, that are a result of the symptoms of my physical illnesses. However, my prescription medications have been significantly lowered in both their dosages and quantity, and as a result most days I’m bed ridden. I went from having a full time job, a career in finance in the making, about to graduate from college and a full time caretaker to my disabled 8 year old son, to living on disability, having to drop out of college, having to turn down a career at a top finance agency in nyc, and having to give custody of my only child to my ex husband, as a result of my prescription mefications being drastically altered in dosage and quantity. This “opiate epidemic” has cost me my life, and my happiness, my motherhood, my independence and right to live a quality life. I never imagined In the United States, there would be such a plague upon our society. A society of individuals who suffer from documented debilitating physical illnesses like myself, illnesses Like lupus, chronic rhumatoid arthritis, MS, spinal injuries, spina bifida. Were being treated with injustice, its medical misconduct, at the very least. Cancer patients who are dying like my aunt who has brain cancer being denied prescription for an opiate pain medication. Our illnesses are primarily treated with opiate pain relieving medications. My friend a nurse practitioner driven to commit suicide after being denied her right to continue to be prescribed an opiate based pain medication for MS. The alleged opiate epidemic, stitistically doesn’t have anything to do with the treatment of opiate medications, it mostly has to do with faulty fentanyl patches that were prescribed, not narcotic pain medications that are prescribed for patients with chronic pain from physical illnesses known for causing physics disability from the excrutiating pain symptoms that result from these illnesses. My doctor was threatened and accused of over prescribing, even though it wasnt true, he refused to continue my agreed upon proven course of opiate treatment plan. The doctor I see now prescribes the same medications but in such a lowered dosage, I’m in danger of not being able to go back to college and finish my masters degree and return to work, as I had planned on doing last year, when I was symptom free and able to physically function. The doctor who refused to continue treating me, his actions cost my my home, I lost my apartment because I couldn’t physically travel to see my attorney and would’ve been able to keep my home that I lived in for 20 years, had I had the prescription medication in my system, instead I was bed ridden, hospitalized, had a nervous breakdown. I’ve lost my child, my dear friend to suicide, from this epidemic that is punishing the wrong people. Physically disabled individuals, chronic pain patients, patients dying from cancer were all being denied our rights to be treated for our chronic pain. When is the government going to get the wake up call that’s long overdue!
Wanted to share story. Think its important for all chronic pain sufferers to do so. I did extreme, heavy labor many years, roofing, siding…had many ruptures to back, neck, hernias…60 now and have nerve damage in back, hip, leg, knee…Would max out on nsaids, acetaminophen and many otc drugs that were useless. Tried many herbs and supplements and
chiropractic treatments not good for these kind of injuries.
Opioids are only medication that helps, not totally sometimes, but enough to function thru day and to get some sleep. Alot of excruciating pain and I know many people out there are going through alot worse. Its so horribly wrong that many groups and people in society are treating chronic pain patients with such little compassion and mercy. I pray for them.
My son just turned 19 on August 2nd, 2018. On July 23rd, 2018 he was diagnosed with a very serious chiari malformation and syringomyelia, a rare condition of a fluid-filled cyst in his spinal column. The neurosurgeons have done all they can to help him physically, but his prognosis is a lifetime of excruciating neuropathy and muscle spasms from his shoulders to his toes. We’ve had to move his bedroom into our dining room because the pain was so severe he was falling over when trying to walk (he’s now 4 feet from the only bathroom and has zero privacy). He is mostly bedridden and has virtually no quality of life because of the relentless pain. For the first two months at home after multiple surgeries, he had next to nothing to help with the pain. Amitriptyline 50mg (initially prescribed for migraines which was actually the chiari), flexeril 5 mg 4x/day (prescribed by a kind hearted ER doctor and renewed by the PCP), and gabapentin 600 mg 3x/day initially prescribed by his psychiatrist and renewed by the PCP. Why does it matter who prescribed it? Because he has seen dozens of doctors and specialists, even pain management specialists, but NOBODY is willing to write for anything which actually helps. I finally got him on medical mj in October, but it doesn’t do anywhere near what one little 5 mg of oxy does. Medical mj keeps him from crying in pain 24/7. One little 5 mg of oxy gives him about 5 hours of NORMALCY. He had a temporary script for it when he left the hospital in August, but nobody will refill it. He’s been accused of being a drug seeking addict because he was crying and begging for relief from the pain even though the doctor had full access to his chart.
My child is suffering and every doctor we’ve encountered has felt terrible, but they aren’t willing to risk their license to help my son. We know the risks – his meds are locked up and carefully dispensed by me.
His neurosurgeon wants him to get an intrathecal morphine pump, but there isn’t a single doctor in the Geisinger system who will do it. We’re trying to get help from outside their network, but it has been an uphill battle. I’m not sure if the scariest part is that this is his life and he may never get real relief or if he gets the pump then develops another syrinx (cyst) since that’s a potential side effect.
Opiates may not be the answer we need, but if you had the choice of watching your teenager – formerly so full of life and energy – wasting away, depressed, missing out on life, wouldn’t you hope someone would move heaven and earth to help?
I have been in pain management for9 years. I have degenerative spinal disease, stenosis and arthritis. My medications have been cut in half. I am now in constant pain. I have been through therapy exercises and acupuncture, to no avail. I never abused my opiod medications but now have to suffer because of the new laws. I am not a criminal but am being treated like one
I fell down a flight of stairs in my home due to an earthquake while living in northern Los Angeles County in 1988. Subsequently I had a laminectomy of L5, fusion L4-S2 with stainless steel plates and screws in 1990. I was on Social Security Disability until 1996 when I returned to work. I have had continuing pain in my thoracic and lumbar spine, which now involves pain radiating down my legs.
I’ve been living with chronic pain for over 45 years. It is now controlled for the most part, by meds that help me sleep and a muscle relaxant. Recently, after a move to Arizona, a nurse practitioner refused to refill them. Small doses. I went into withdrawal, ending up in the ER with a blood pressure of 244/227 with an excruciating headache caused by the very high blood pressure. I could have had a stroke. It’s not just opiates that are being denied. Doctors and patients must be allowed to work together on a treatment plan. “First do no harm” is being attacked and people are suffering needlessly. We become dependent but it has nothing to do with addiction. We must fight until that is understood. Forcing a chronic pain patient to suffer needlessly is crazy. It won’t help one addict get off or stay off drugs, but creates desperate people who seek street drugs out of desperation. That is Not what this country is about. I can work again, be a productive citizen again, but for how long? This is a fight that must be won. I bullied my GP into refilling my prescription finally and will sue if anything like this happens again. It isn’t something I relish, but I’m not going to die from a stroke because he’s afraid. There are going to be lawsuits before this is over, and perhaps that will be the step to change what is VERY wrong – government interference between doctor and patient while real drug addicts continue to get their drugs.