What Is Your Tapering Story?

What Is Your Tapering Story?

When Mark Sullivan Professor of Psychiatry and Behavioral Sciences at the University of Washington tweeted this the other day: “It is possible to taper #opioids without an increase in pain or activity interference”, it set off an interesting reaction on Twitter.

Chronic Pain Patient advocate Claudia Merandi—who founded the Don’t Punish Patient Rally movement–challenged him on Twitter saying : “Really? Let’s ask 500 chronic pain patients: “When you were forced tapered, did your pain magically disappear?”

In fairness to Dr. Sullivan, he wasn’t necessarily talking about a forced taper, but the topic begs some questions we’d like to ask our readers.

Would you tell us your taper story?

If you voluntarily wanted to taper off opioid medication, let us know why you decided to do it and importantly how you did it and how you are feeling today.

To Claudia Merandi’s point—if you have been forced tapered, tell us how and why it happened. How did it occur and how are you doing today?

Use our comments section to leave your story—and we may reach out to you for more detail.

Try to keep your “story” as short as possible—although we fully realize that this is an emotional topic and some of you may vent (it’s ok),but while you’re sharing remember to talk about the cause of pain, how long you’ve had it, and any other details.

We all know that the forced tapering has intensified as a result of what some are calling a “overreaction” to the Centers for Disease Control (CDC) Guideline issued in 2016. That overreaction was fueled by the Drug Enforcement Administration (DEA) cracking down on doctors who they alleged were over prescribing. The resulting fear has chilled prescribing habits of many doctors and hospitals.

In the meantime, real people, many of you perhaps have been impacted.

Tell us your tapering story.

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Authored by: Ed Coghlan

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Terrie Pettibon

I am a 56-year-old female, and have had Crohn’s disease for 32 years. I have been on opioids for most of those years. The Crohn’s eventually caused osteoporosis, and I have suffered through 9 compression fractures in my back over the last year and a half. The pain is excruciating. I went along with my doctor’s forced taper, having no other choice. Now my quality of life is so bad, I am just waiting for my time to go. I never thought I’d receive this kind of treatment in America. I have always taken my pain medicine as prescribed, and now I’m being punished because the CDC got it wrong!

Margaret Drumheiser

I am a 50 year old wife , grandmother and mother. I’ve been suffering for more then 15 years with CRPS (RSD ) , small nerve multifocal neuropathy, fibromyalgia, osteoarthritis, DJD ,sciatica hx of avascular necrosis caused back in 2009 to 2010 from forced injections over 56 just to get sm amount of pain meds at the time from my old pain dr . Eventually I left to go back with my pain dr who left his practice . I had been walking around for over a year on a fractured hip because that dr refused to listen and cut my meds in half. So she returned my meds to effective doses . But unfortunately she left again and again I got different dr in that pain clinic and again same thing my meds always cut down . I would suffer unimaginable hell . Everytime . This happened 2 other times I would follow her because she was the only one who truelly ever treated me like a person/a human and not a number . The last time she left their was no covering dr and meds were gonna run out I begged the nurse to help if she new of a dr because I know what it’s like too completely go off the meds altogether . I did it once because a dr insisted it would help my pain . Well it was the summer from hell , the withdrawl horrific even though I did take low dose methadone and taper I still had withdrawl. But that’s also when I found the only med that seemed to even touch my pain was the methadone . But I was to go off all meds eventually. That was the darkest time in my life where I actually considered fof the first time to committ suicide because I just wanted the horrific pain too stop , the high impact intractable pain to .. so we r to primary dr and he sent me too new pain clinic that’s the dr that I spoke highly off above she worked with me for individualized treatment plan. Anyway last time she left finally went to new dr who kept me on her med regimen finally had effective relief for 8 or so years then the ,CDC guidelines came oyr and my hell began again meds cut /taken

Christina Ream

I have several chronic pain conditions. Some were diagnosed a few years ago and others recently. I also have major reactions (anaphylaxis shock) to many medications. After a difficult surgery last June my life began to spiral. Without going thru the back and forth, my primary care decided to taper me off opioids and has stated several reasons I still don’t understand. He couldn’t find a pain doctor to take me and said I would be doing a slow taper, we would pause if needed, and gave me a CDC booklet. I struggled physically and had to pause frequently but came down until I got to a point of no pain control and my body in total chaos. I sent a message about my decline and expressed concern that the treatment plan was crossing our fingers and hope there is no pain. I also brought up why he notated at every visit, that I was in agreement with the taper when that wasn’t the case. Then my life got so much worse!!!! My doctor just in the last two weeks decided the taper was prolonging the issue of my pain being because of the opioids. He cancelled my office visit and instead told me via Mychart, that he was doing an expedited rapid taper and done in 8 weeks. He also stated his decision was final but would be happy to keep treating my Non-chronic pain conditions. That was not true. He has ignored my mychart messages and had the head doctor tell me that they are no longer treating me and advised me to go to the ER. Who can help? How long do we wait for help? Can anyone help me have a voice? I’m scared and have lost the ability to even function as a human being. My husband being a cop can’t help me and my family has to sit and watch my life keep passing by as I try to hold on and not let go every second of every day!

Ruth

I entered PM in 2010 but of course it all goes way back. At one point for a period of 5 yrs I was on 100 mcg’s of fentanyl with 16mg’s of hydromorphone daily. That was the 2nd center I’d been to and at first she agreed with my orig dr that the only thing that works in my case is the pain meds, with injections and high doses of nerve meds. When all the stuff started happening in the public eye they tapered me down to 75 mcg’s. They weren’t concerned with the adverse effects in my mobility and my ability to function. Then a year later when public issues were rising again they cut me down to 50 mcg’s. After 3 mos they put me back on 75 mcg’s. A year later they again dropped me down to 50 mcg’ where I stayed. One morning at 3 AM as I read my Portal I saw where she planned on weaning me off all my meds and getting my life back to “normal”. I couldn’t believe that a dr I’d seen for 7 years was going to do this to me. I found another dr and we’ve had a hard road together and now this one tapered me by 4mg’s of my hydromorphone. I’ve explained that they’re ruining me…..I have a dog and that’s my only exercise and I got to where I couldn’t walk her. I’m not getting the the same results from my injections and I’ve had to quit going out to bible study and church. With my problems I cannot sit nor stand……

Lisa Mitchell

Being force tapered after a decade of dependence on Tramadol..prescribing Dr tried to discontinue my Tramadol after prescribing it to me af high doses for over a decadse over the course of just 6 weeks..suffering from lower dose..got him to slow the taper but had to fight like Hell &threaten him with legal action, &he is still forcing me off it despite the fact that I am totally dependent on it for pain relief &he has no evidence I abuse or misuse Tramadol or any drug. Shame on these Dr’s for putting their patients through Hell

Melinda Tarnow

I just moved here to be close to my sister who was not doing well. After 15 yrs in PM , we found a dose of Opioids that gave me some quality of life. As soon as I moved to this state without really checking my records and smiling and nodding their head at my, they force tapered my drugs that I had been stable on for 4 years. They did nothing else for the pain. Now , I am in constant pain and my PM dropped me and for the first time in 15 yrs, I have no PM and do not know what I am going to do.

Margaret Drumheiser

Continued to my original post I’ve exhausted all non opioid treatments . I’ve attempted multiple times nerve block , sympathetic blocks for my neuropathy I even went far as attempted diet changes as I read might help. I’ve followed every rule pill counts ,urine tests (which I might add for 15 years have never had any issues with and just my ordered meds in my system) I’ve never diverted my meds ,I keep in a safe. Even after 56 or more forced steroid injections which my old pain dr forced me to get to receive at the time the small amount of meds I received and development of avascular necrosis and need for at the age of 40 bilateral hip surgeries I continued through multiple other doctors injections and flaccid injections and multiple other non opioid treatments seeking relief for this monster called intractable pain. Multiple dr and appts that is what my life has become. I’m not an addict just someone with chronic illnesses causing intractable pain looking for relief and wanting my quality life back .that which simply doesnt exist much anymore since the only effective meds were forced to take away and replace with less effective opioid pain med and doses. I also continue to see my pain psychiatrist for biofeedback which I’ve done since 2007 only relief I get is a place to vent and share my feelings about the non effective treatments I’m getting and wishing I could get my effective meds back so I could get my quality life back . The ability to care for my home, shower everyday ( that which I no longer can do since these meds cut) I have to choose whether I shower or clean some of my house as multiple things I just can’t do anymore . My body chooses for me what I can and cannot do that day. The quality time with my spouse, intimacy just isnt their due to the pain. I dont want to be a burden to anyone or for anyone. Myself and 50 million other pain pts just want our quality life back and tolerable pain . That is what pain therapy is all about

Margaret Drumheiser

Hi I’m a 50 year old disabled nurse, wife ,grandmother and mother . I have suffered for over 15 years seeking relief from this monster called debilitating intractable / chronic high impact pain. Caused by my multiple chronic illnesses CRPS(RSD), small nerve multifocal neuropathy, fibromyalgia, severe osteoarthritis, DJD, hx of bulging L4 TO L5 non operative pain with sciatica, hx avascular necrosis in bilateral hips due to forced overuse of steroid injections to get sm. amount of pain meds, after years of many non opioid treatments and non opioid prescription meds some which I still use and multiple dr and surgeries on my hips 6 total and 2 acl / mil surgeries of my knee. I finally found my present dr who up until 2016 guidelines came out treated me with effective opioid pain meds methadone and percocet I finally had somewhat of a quality life and tolerable pain . Then the CDC guidelines came out and my hell and nightmare began again intense horrific pain after I was forced to taper off the effective meds and on to what I take now msir 15mg x3 a day I also take 3600 of neurontin multiple supplements and continue to use nonopioiod treatments ,multiple shots ,nerve blocks and had neuro stimulator placed last march with no relief to date . I suffer 24/7 horrific pain due to this forced taper and the DEA ,DOJ threats against my dr he refuses to change my meds. until my quality of life diminished so much I and my spouse after multiple pleas for help finally convinced him to increase by 1 pill but that really has had no effect on my pain and continue to suffer a silent hell where until these guidelines are removed and redone by those with experience of this kind of pain and knowledgeable dr redo them and DEA and medical boards told to stand down and back of our innocent dr mine at 50 million other CPP’s suffering and torcher will continue . My quality of life has declined so much I dont recognize myself , loosing family time.

Am2PmRN

Additional information from post I just submitted: I failed to say that beginning 21 years ago, I tried every medication (non-narcotic), PT, & every other treatment the doctor suggested. I agreed to several invasive procedure (during one of them, the spinal cord stimulator lead was put through my spinal cord, then a month later during “radio-frequency lesioning”, she missed & destroyed 2 MAJOR nerve roots which resulted in the loss of use of my right leg and affected a portion of my low back). I’m on my 3rd SCS & didn’t want it since I had already had 2 many years ago. The list of meds I’ve tried over the years multiple times, is exhausting! The most commonly prescribed or suggested meds these days – I am unable to take. Some cause GI issues & I have a history of bleeding ulcer, GERDS & hiatal hernia. Others (like Tylenol), I can’t take due to a fatty liver I got after ischemic hepatitis (they lost my b/p for almost 15 mins. during surgery many years ago, causing this), so many medications cause my liver enzymes to shoot up! The only other one that doesn’t fit into the previous categories is Lyrica which makes me very dizzy so I’m a fall risk. So essentially, yes, I have been through all of the alternative treatments – at least a few times! Opioids were NOT the first option & they never are, but some agencies would like for people to believe that doctors start with opioids & that is just not true. I’m happy to provide my diagnoses that cause my intractable pain. I do use a few topical creams for the areas where it helps a TINY amount (except my arthritis cream which is amazing but that is only for my knees, wrists & elbows and the majority of my pain is in my back & both legs/feet & most is NOT related to arthritis). I live on a heating pad which provides a little bit of relief, but my pain levels are so high that the relief is negligible. I spend my time in a hospital bed w/memory foam mattress.

Am2PmRN

I’ve been in a w/c for 21 yrs due to a complication of surgery (then a procedure that was supposed to help me, put me in the w/c). I was on very high dose opioids for close to 10 yrs. As one of my types of pain decreased, I tapered myself (with blessing of my PMP), & reduced my daily dosage by half very slowly. A few yrs later, I again tapered myself slowly but my dosage was still considered very high, however, I was able to start working again (less than part-time). I maintained this dosage for almost 10 years & was even able to work full-time++ on that dosage (as a RN). About 1 yr ago, my doctor of 19 yrs moved across the country & the owner of the clinic saw what my dosage was & the forced tapering began. I was required to get a spinal cord stimulator (little help). ALL patients over 90MME were being force tapered & those on less than 90MME, no matter how low their dosage, were refused an increase. They did do it slowly – reducing me by 10% each month. I couldn’t tolerate this even though I was in bed 24/7 except when I had patients to see (home care RN). I was only working approx. 5 hours each wk, but was forced to reduce my patient load due to pain. I love working & it’s good for me, so I kept a few patients each wk. After approx. 5 months at my breaking point, I FINALLY found a doctor who only manages opioids – he does no pain management except medications. I tried pain doctors before I found him & they all refused me due to the medication I was on (an opioid), so I consider myself lucky to have found someone who stopped tapering me & has gradually increased me slightly. In another month I might actually not have to suffer intractable pain part of the day! The CDC guidelines started the fear doctors have but the DEA is responsible for the white-knuckle fear of prescribing! Doctors now want all CPP’s on addiction medication (too many people have stock in these & are pushing their propaganda HARD).

Dianna

In 1981 I was in a car accident with my children and a friends child. We lived in a very remote area with bad road conditions, I had 4 children in the car when we went over a cliff, car flipped end over end once, rolled 2x’s and landed on it’s top. Angel on my shoulder watched after children, but I broke cervical discs 6&7.
Nine yrs. later, another roll-over, same horrid road, my Mom was driving. Nothing broken, just torn apart. 20 yrs. later, hit nearly head-on as a passenger again.So, what I have now is a body with 28 post-surgeries, and as many others lots of pain that will never heal. I am 71, and had hoped for some comfort in my old age to alleviate some of the pain. No such luck. In the last 2 yrs. I have had a 3/4 decllne in my pain dosage and sometimes suffer a #8 on their pain chart, most of the time manage at 5-6. Lord help us all, because I fail to see anyone else able to help. I’ve written every political power in my state, but get form letters telling me what’s good for me. But I keep bugging them anyway, hoping for help for us all.

Anonymous

Torturing us to death is not the right solution… I’m gonna make this as painless as possible! When my meds were stopped abruptly, there was no tapering unless 20 pills counts as a proper tapering. I have adhesive arachnoiditis, fibromyalgia, it effects me to the point I was completely disabled from day one in crying torturous unrelenting pain daily. When my messages stopped I didn’t sleep for weeks my pain was literally through the roof! I would cry, thrash and kick from lack of relief and much needed rest it was pure hell on me. I would Lay on a bed of ice and finally cry myself literally to sleep by the 5 or 6 night.. But usually nodes off when the sun came up. I have severe neck,shoulder,spine and lower. Back pain that i am constantly battling.. Without my meds my pain so intense I am nauseated, sick can’t turn my neck or lower back or bend over.. I feel I was completely neglected and greatly harmed by the medical community. I seriously was tortured almost to my death.

Jan G. Kramer

It’s hard not to be emotional about this. I’ve lost, at an early age, all the people I’ve held important in my life.
In my early 20’s, I lost my mom (47) to a heart attack.
No brothers or sisters. I lost my Grandfather and not long after, lost my Grandmother as well. My mother divorced my dad that I really don’t remember, as I was to young to know.
I’ve been on my own for a long time. Made quite a few lefts that should have been rights. The point is I was in control of my life with no help or guidence. In an earlier post I gave you the cliff notes of my path of pain. This medication has been a curse and blessing.
This medication has been a tool that has given me strength to walk out the door and live a somewhat normal life. I’ve used it methodically and do not take it for granted. It’s a useful bandaide and the only one that works with me. My doctor prescribes it
My insurance covers it and my drug provider ok’s it.
These people control me. Now my pharmacist tells me I can’t receive my extended release with my immediate release because they are the same medications!! Mad is an understatement. I wish I never had to use these drugs. I dare anyone to live inside my body for 24 hours and feel what I do. If thoughts could kill, I’d be a serial killer! I am so mad, I’m shaking. It’s not alright with
what is happening. Is there any help for me? Frustrated
Jan

Jan G. Kramer

Tapering off, let me give this a go. 14 years ago I had spine surgery. For over 30 years i sub-contracted installing window treatments. Draperies, shades, blinds and upholstered walls. A Jew with tools! I was the best in the trade and did high profile jobs for the elite. If you needed it hung in mid air, I could do it! That being said, labor day 2006 I walked out my door and walked into a wall. Something was wrong. My lower back had been hurting for a few years but I just fluffed it off as I was working to hard. Up and down on ladders and scaffolds drilling into concrete, more often than not, usually under drop soffets etc. Labor day 2006 I drove straight to the hospital. They took an MRI of my spinal column. My entire life changed. Although my biggest complaint was my lower back, the Neurosurgen(s) pointed to my neck. I had a choice to make. If they did not perform neck surgery, I would be paralyzed from my neck down. 36 days in the hospital on 3 separate trips in a row, I finally got home. I went to a state board physician and he ran a pencil thru my name and said I was done. No more work. My living room became my bedroom and I rehabbed for months.
I saw a certified pain physician and anesthesiologist who proceeded to give me spine injections that did not last.
My primary doctor sat me down, her words, I needed to have a better quality of life and prescribed me Oxyicodone and oxyicontin.
1-30mg break-thru
1-40mg time released.
To me the result was unbelievable. I felt I could do anything without pain.
And then…..6 or so months later, it happened. The world had gone crazy! She could not write me the medication that was my life-line. I went back to my CPP/Anestthesian and he was able to write me the medication. No longer could I get both drugs but, he could give me the “max” dosage oxycodone, which was 180/30mg tablets per 28 days. This lasted, 5-6 years. In the end, he moved on and told me to find another doctor. I did. I’ve gone from 210-180-230-200-160, now 80m

Amy Wike

When dealing with chronic pain, every pain pill is another couple of hours of being functional. It means getting the grocery shopping done or taking that shower you’ve been put off for a few days because you’ve been in a flare-up. It also means being able to go to work and earn those dollars it takes to pay that electric bill that is overdue. Being in chronic pain means life comes to a screeching halt and until you get that pain under control, nothing will get done. No bills get paid. Your work suffers and you run out of food in the house.
I had been on pain medication for over a decade when I started getting the feeling things were about to change. My doctor, at the time, had mentioned she was going to a different job within the hospital/Drs office, so that meant I would be getting a new doctor to manage my pain contract.
Long story short, I was tapered at the end of 2017 and was forced to find alternative means of pain management. The medical field failed me. That’s when I found kratom.

Cynthia Cameron

1999 Fibro/CFS took me out of nursing. After 15′ yrs of counseling and anti-depressants I didn’t need. Along with Xanax, flexiril, Neurotin and hydrocodne which I was on for 7 yrs. I slowly weaned off over a 6 mth period. By myself with no problems. For 5 yrs I only took Xanax for an anxiety/ panic attacks disorder. In 2018 I had a 2 level lumbar fusion which left me in severe pain. To this day it is some better but still need pain meds. My primary of 28 yrs closed in 10/2018. Every Dr I have seen since have quit writing pain meds at a total of 6. The Pain Clinic denied me because of the Xanax. That I have been on for 28 yrs but it was cut by 1\3 5 yrs ago. Because I am still care considered a pt under my Orthopedic Surgeon. I have been receiving some pain meds. But the whole recovery time my pain have not been adequately controlled. I live in fear that I may be in pain for the rest of my life. And will not be able to get meds to be able to function. I may be able to get one more prescription of hydrocodone. After that I am doomed!! Without pain meds I’m mostly in bed. I cannot stand longer than 5 minutes, walk more than 10 or attend family functions. Because of finances I needed to return to employment. That’s why I had surgery but it failed. I had already started the ball rolling to return to work. But the failure of this back surgery has prevented that. The Anxiety of losing pain control has caused me to be suicidal. I cannot live the rest of my life in pain nor anxiety. This is of course causing more anxiety.

Lyndsey

I had been on opioid pain medication for 10 years when it all started. I’m a fast metabolizer always have been so my dose was quite high by then. At first i was told the new laws wouldn’t affect me since i had a documented chronic condition and i didn’t have any sign of addiction. I never failed a pee test, never asked for meds early, heck, i never even got any kind of feeling from my meds other than pain relief. A few months later my doctor told me he was going to stop seeing patients but that he’d still be in clinic to help but I’d start to see a pa each month and he hired a pm doctor, the next visit the pa asked how my pain was. I told her it was worse bc it was. She asked how it could possibly be worse since i was on such a high dose. She told me next month all patients would begin a force taper to get below the new mme requirement. I asked how i was supposed to do that being a mom of 3 and already living in pain. Most days those meds are the only reason i could parent or function. She said it was the law and we had to do it or find another doctor. She said my dose and the fact that i still had pain made her “uncomfortable”. “Me too” i said. So the next month they lowered my meds 60 mg. It was so terrible. By the 3rd month i had to quit working and quit nursing school bc the pain was so bad.
I stopped cold turkey a few months later- i decided the little pain relief they did still give me wasn’t worth being treated poorly every month and looked at as an addict and not a patient anymore. I had an ovarian cyst rupture that year and the Er staff treated me awful- i think just bc i was on opioids and the stigma was so bad. The doctor there said “don’t even try to ask me to write you a script for pain meds. i wasn’t taken seriously and everyone automatically assumed i was there for pain meds.
Since then- i found a doctor i truly truSt and whom trusts me too. That’s been a game changer. I found a supplement that helps my pain A little. I’ll never go back to that do

Stephanie

I was diagnosed with Fibromyalgia in 2008. I had been prescribed opiates (hydrocodone) around that time until March of 2016. I was given a partial refill and told to taper. I became very depressed, had panic attacks, severely increased pain, and had to go from working 30 hours a week to barley anything. Still struggling today. The same doctor who had prescribed all those years rolled her eyes when I mentioned I had been laying around wanting to die at that time. She saw how I changed and she is completely different now as a doctor.

Cindy R

The University of Washington, where that stupid assertion originated, had a “pain clinic” back in the 1970s and 1980s, maybe they still do Long story short, it was mostly behavior modification, and when people on disabilty were trained to the point they didn’t exhibit pain behaviors or complain about pain, no matter how much pain they were actually in, they were pronounced “cured”. According to an investigative article by one of the Seattle daily papers, many people who had been on disabilty lost their disability payments, and SSDI, but were still unable to work.

Evidently nothing has changed and the UW is still spouting the same nonsense.

Kelley Thornton

People have been being tapered for years, why is this just now important to the nation pain report? I think this is a valid question?

David W Cole

I’ve been forced tapered from 350mg to 112mg now this is caused me so much pain and anxiety I actually wanted to kill people then kill my self, for about a year-and-a-half, it drove me to a psychiatrist, and then finally I found a pain psychologist. I’ve been lied to by two doctors, yelled at, talk down to, interrogated, treated like a rabid dog. It started with my PC then went to a PM. The PM has been the worst, I seen him first about 12 years ago I left his office with 250mg. He told me he was going to taper me to 120mg. this has been going on while I was extremely sick, they would not listen to me. Turned out to be Crohn’s disease, I ended up with malnutrition, almost dead, I just got a new disease lymphedema, I think it was caused from the malnutrition. Now the PM is at it again telling me I’m on way too much. These idiots, I’m now bedridden, I’m being tortured. This guy has yelled at me, talks down to me, has left me in his office until I was the last patient before lunch and then interrogated me like I was a murder suspect. These idiots have destroyed three and a half years of my life. Forcefully tapering me when I had undiagnosed Crohn’s disease, went cold turkey off 600 mg Lyrica which drove me insane. I’ve gotten a little better but I’m still in bed 95% of every day. And now this losers at it again. Anxiety is back, the dirty pain from anxiety, and now I’m thinking about suicide again. This is just the extremely short story of three and a half years of torture. If it wasn’t for my wife keeping an eye on me, keeping me in this world, there would be some dead people, including me. I now have four incurable diseases. Painful diabetic neuropathy, Crohn’s disease, arthritis, and lymphedema, and I have a bone on bone shoulder with two tears in the tendon. Going cold turkey off 600 mg of Lyrica caused me to think about killing other people. Thank God I don’t think about that anymore. However I’ve lost my will to live, I suspect I’ll be dead within a year.

Kimberly Boddie

I am 43 and have been on Opiod medications for 10 years. I am a mother, grandmother and until I was forced taper a college student. I AM in sobriety for 10 years and my drug of choice wasn’t opiods nor even in the pharmaceutical family. I do not produce collagen the glue that holds your joints and ligaments in place. My ligaments are stretch and it causes dislocations and injuries to tendons and many other things. I moved from my home state and doctor of 6 years to go have surgery by a doctor that was a specialist in my disease, the healing problems etc. I currently need both hips replaced both knees replaced work on both feet and neck surgery. When I moved they cut my medicine in half saying that the dose was outrages and they couldn’t prescribe it. FF 2 more surgeries I am on the same cut dose for 3 years and I ask for them to increase they give my GAPA then Lyrica I gained 85 pounds and can hardly walk. I ask again about increase medicine. They told me buprenorphine patch was stronger and switch me. I was unaware what they were just needed relief. After 3 months of intense pain losing my life to the couch and falling into depression they moved me to Belbuca and refuse to give anything else. I changed doctors went to private group and its owned by the same doctor from our local pain management office. I live in mountains I am being treated like a addict. I am barely taking care of my 7 year old and my electric wheelchair will be here in 2 weeks.

Charles Lucas

My forced taper story is probably unique. It began with having a intrathecal pain pump implanted in my abdominal area. After multiple issues with it and 5 corrective surgeries a pump from a different manufacturer did the job. This lasted a year with no problems.
I started to developed what looked like a rash around the pump implant area.
On my next follow up appointment with the doctor took one look at the rash and said, “I have to take him in”. Meaning into surgery. He seen the rash as a infection. The next day the pump was explanted and I was given pills at the hospital for my pain. Those pills simply were not adequate in relation to what the pump had provided. I assumed the doctor surely would address this issue at my next follow up.
I asked the doctor how soon could I get another pump. He replied, “You won’t be getting another pump”. That “once you have the bug, you will always have it”. He continued, “No other doctor will touch you.” I, of course was upset with the situation as a whole. I was given 30 mme to last a month.
So my forced taper went from 680 mme to 0 in one months time. The kick in the head though is records from the hospital showed no infection. I had wondered why I had not been given a antibiotic.
I’m not sure why this happened. To many complications (broken catheter, 2 pump failures) and he used the opportunity to dismiss me?
This dismissal in itself was underhanded. The receptionist made me an appointment at another location with a different doctor but within the same practice. She did so while acting peculiar. Turns out this other location never had an appointment for me.
To this day I still have not been able to get into another pain specialists care. I had to go on Medication Assisted Treatment (MAT) for withdrawals Which did nothing for my pain. In doing this treatment I was required to attend a recovery meeting once a week. Typically MAT is for recovering addicts, therefore I was treated as one.
I can only hope one day this nightmare will

Snake Lady

I’m a gulf war veteran that came back unwell. I have been in pain management for over 19 years. In all those years, I had been through every possible treatment for pain control. (Epidural and facet injections, disc decompression, massage therapy, back brace, TENS unit and so many different medications, opioid and non-opioid) until my pain mgt dr and I found something that worked. I was on fentanyl patches 75mcg every 48 hrs and oxycodone 30mg every 4-6 as needed for breakthrough as well as klonopin and lexapro. I had been taking those meds over 8 years with no side effects and no increase. I had a real life. I was teaching full time which as a band/ choir/drama director is much more than say a history teacher. We had after school rehearsals, concerts, marching band, play productions e.t.c. Plus, I had other activities that I did as a hobby such as rescuing needy reptiles, especially snakes. All of that changed when I was forced tapered off of my meds. VA told me I had to choose between my pain meds and my anxiety meds immediately. So my klonopin, even though it was only .5mg 3xs a day was dropped. Then they started dropping my pain meds. During this time, my husband became disabled. So between the pain and withdrawal and trying to take care of him, it was pure hell. So here I sit, 6 years later. No longer working, in constant pain, a low dose of pain meds that barely touches anything while still trying to take care of my disabled husband. No longer do I rescue reptiles nor have a life. I can’t teach anymore and I’ve lost over 70lbs. I’ve developed another condition that causes more pain, occipital neuralgia and some days it’s really hard to look ahead. All our would take for me to live is to get my meds back. That’s it! My dr has tried to refer me out of VA for treatment 4 times but they won’t approve it. So, I’m just existing, trying to take care of my husband. Veterans deserve better!

Bradley Bill Parker

Hello There, I had just posted an answer comment on a similar or the same topic Actually, here for this space. I just though haha, ran out of space ha ha ha. SO I’m just going to finish up Here by saying that I am available to discuss issues with my own experiences with Primary Care Doctor to Patient ABANDONMENT and our associated Hospital involved Double banger Brand of It’s PATIENT DUMPING of me, like I’d previously discussed. I’m absolutely capable of providing tangible facts and Medical Records and what Not to that supports my account of everything I have said as the truth So Help me God. I don’t pull punches and lay it down exactly as it has occurred. I have already named everybody’s Full Names, and Titles before, and most certainly absolutely can , and will again anytime.
Thanks for Sharing your Thoughts and Questions Sincerely yours Mr Bradley Bill Parker ✝️⛹️🤸 🏀🤾

Audrey Lynn

(continued from previous comment)
So I could keep my breakthrough pain meds. Took the palliative care doctor SEVEN WEEKS to get me back up to 100 mcg/hr every 72 hours which didn’t cut the mustard in the first place! Primary care tried to get them to go to every 48 hours, but insurance wouldn’t let him do it. My pulse is over 100 bpm resting now (tachycardia), blood pressure is creeping up, and I am in bed all the time while the palliative care doctor wants me to do Tai Chi and aquatic therapy and CBT and yoga.

I want to live to see my kid graduate high school (hence the half a kid). I want to spend time with my 8 year old granddaughter and be around for my new grandbaby that is due in late August! Now that my hormone levels have dropped down, the tamoxifen isn’t working as well and I’ve had some tumor regrowth. It hurts like hell. They don’t care.

Audrey Lynn

I could have sworn that I had answered this one, but when you’re in severe pain it takes a toll on your memory, so here goes. Been in intractable pain since the summer of 1998 and after trying everything else, was put on narcotics. They didn’t let me go back to work, but allowed me to function and raise one kid and half of the other (I’ll explain as I get to it). I am a rapid metabolizer and have fibromyalgia, chronic myofascial pain, ME/CFS, degenerative discs lumbar, peripheral neuropathy, levoscoliosis of neck, reversal of curvature C4-C5, hip dysplasia, pelvic torsion, and others.

2014: due to a law being passed in MA and a pharmacist not calling my doctor but assuming we were trying to screw the system and called the DEA (also did this to a handful of other patients, was caught in the act and fired but the damage was done). I had been using one 100 mcg/hr patch every 48 hours and had 5 mg oxycodone for breakthrough pain. I was forced to one patch every 72 hours and NO breakthrough meds, and as a rapid metabolizer, I wasn’t functional the third day but at least got two halfway decent ones.

February 2018: after having a MRSA infection for a year that wasn’t cleaning up along with my other maladies, my doctor was forced by higher ups to taper me to 50 mcg/hr patches. He tried to do it humanely, but ended up having to decrease by 25 mcg per month. At 75 mcg/hr, he had to add in an oral pain med as I was tachycardic. Once I got down to 50 mcg and was even worse, he had to double the dosage of the oral med, and neither gave me much relief but allowed me to not kill myself.

September of 2019 I noticed a skin change on my left breast. I have stage IV metastatic breast cancer in the breast, left sentinel node, rib under my left collarbone, sternum, lumbar spine, right hip and top of femur, and a spot in the right lobe of my liver. I was forced to wean off tramadol completely (say what you will but it dulled the fibro pain) (continued)

Marcie Anderson Stanley

the disorder I have is called wine / pain hematuria syndrome and causes such great pain that I am feeling nauseous 24/7 and I pee constant blood. it began in 2005 where I began to get sick when kidney stone after another until it was seen that it was constant grit going through my ureter scratching it and causing incredible pain. after numerous surgeries because my bones have gone soft because the calcium is depleted through my kidneys I had a total hip replacement. The pain has been so intense and I’ve tried to pay for my own medications at time but when the opioid crisis started to occur my position was doing a forced taper to give me 130 mg tablet every 12 hours which the half-life of that medication well it lasts four to six hours at its best. because of this I decided to medicate myself I went out I found dealers and I bought heroin and learn how to shoot up learn how to give an intramuscular injection because my doctors didn’t care they didn’t they were only worried about their own skin on their back didn’t care if I was in pain named chair to fix the problem in a realistic manner they were chicken and they were scared of the DEA.

Catalyzt

This is a low-dose chronic pain story. I have had Mixed Connective Tissue Disorder since I was about 15, and while I had some really good jobs, outstanding friends, and a supportive wife, I repeatedly had trouble at work due to chronic migraines caused by MCTD, drank more than I should have, and had issues with road rage. In 1997 I started low-dose benzos, and in 2002, I started Norco, and my life began turning around. I quit alcohol and recreational drugs completely in 2014, went to grad school, got a tremendous new career. In 2016, my PCP encouraged me to taper, and I gave it a try– I started at 60 5/325 in 28 days, and now can sometimes stretch 60 pills to 40 days or so (during the slow months at my job.) The first few times I skipped a day or two, I was shocked– at my dose, Norco simply was not addictive. On the rare days I had no headache, I felt the same with medication or without! But the rationale was: If you can skip 2 days per week, you can skip 7! Er, that’s not science. If I try to go lower, the pain makes it impossible to finish paperwork at night, plan vacations, the few sports I can still do, movies, etc. RESULTS: 60 pills in 36 days is possible– nice to know I can skip days, but very hard to guess which days I won’t get a headache. However, all this wrecked my relationship with my PCP, we argue about this every 90 days, and there is always the veiled threat that she will force a complete discontinuation or that I will push back hard– I know ethics and the law, and I’m not afraid to quote them. My doctor is a great person, but I do not think that deep down she really believes taper or d/c would help me, though she THINKS she believes it. The worst: Opioid monitoring consumes so many resources that my provider has cut back on other routine testing and case management. My guess: HMO rations care to X number of hours– and antiopioid hysteria consumes about 2/3 of X– Narcan, drug testing & other junk “treatment.” Scary!

Eric S LaRose

The short story is that after 12 years on a stable dose of Fentanyl & Oxycodone, I was force tapered in ONE visit at the pain management clinic I had been with for 5 years. Before the abrupt dose change I was able to attend my children’s activities & have some quality of life. Since then, I have had to restrict myself to one big activity, like shopping or cleaning, per day.

Joni Cloud

I have had CP since 2004, interstitial cystitis. My meds have been cut in half. On bad days, which there are more of, I lay in bed and pray to die. I feel like my insides have been scraped with a shovel. The pain keeps me from a normal life, my life is pretty much laying flat because it helps me.

Jcm

Omg really please I was on same medication same dose for over 22 years. I worked PT went to grandkids activities went for walks got off of Federal and State aid . I was forced taken off my prescription pain medicine, I was so very very sick I wanted to die , I thought it may happen. I thought I was alone in this but I am not . We are over 50 million Veterans and non veterans being harmed forced off our prescription pain medicine. We have the same story how can I keep hearing MY story MY life when I have never met, seen or spoken with anyone of these people??? We that have been forced taken off and forced tapered are now NOT working NOT going to school NOT going to grandkids activities. We are home bound and bedridden. Forced tapered and forced taken off our prescription pain medicine is just so very wrong when the narcotic opiate opioid Pain medication works for MILLIONS yes after ALL other treatments did NOT . You sir have the nerve to say that tapering is not harming anyone!!! Why don’t you examine anyone of the over 50 million Veterans and non veterans???!!!

Carrie

A male family member had his necessary opioid pain meds reduced to an ineffective dose and heart went back into tachycardia. He suffered a heart attack due to undertreated pain. Now is in heart failure. The ER that saw him immediately gave him morphine and said “we need to get this pain under control to help his heart”
Legitimate opioids at an effective dose are life saving medications needed by so many people

Reese Tyrell

After failing every available therapy (including an interdisciplinary pain program) for severe interstitial cystitis (autoimmune type), I’ve been on palliative high-dose opioid medication most of my life.

Before starting long-term opioid therapy, I lived in a bathroom. Thanks to last-resort medication, I’ve gotten to spend the last 20 years earning a doctorate, teaching full-time, and raising my kid.

One immunosuppressant (cyclosporine A) does well in clinical trials for my condition, but doctors are reluctant to keep patients on cyclosporine for 50 years. Long-term opioid medication is, in my case, the best risk/benefit balance that currently exists.

I did a temporary, well-supported, and ultra-slow (<10% per month) taper for pregnancy. Withdrawal was negligible and easily manageable, but the bladder lining defect was (obviously) still there. On my "normal" high dose, I can go about an hour without peeing. On lower doses, urine soaking into wounded tissue gets less and less bearable, and I have to use the bathroom more and more often.

While Dr. Sullivan is correct that it is *possible* to taper opioid medication without activity interference, that does not mean *everyone* can. I would hope any reasonable person could recognize a bathroom trip every 10-20 minutes as "activity interference."

(This is a pseudonym, but in case any reader is suspicious of anonymous patients on the internet, I have no connection whatsoever with any pharmaceutical corporation.)

Pam

I am a chronic intractable pain sufferer for twenty years. I suffer from CRPS/RSD, two failed spinal fusions, osteoarthritis, neuropathy, three herniated discs, severe stenosis, fibro, degenerative disc disease, cervical disc degeneration, just to name a few. Over the course of 20 years I have been out thru hell and back with alternative therapies and severe non opioid medication out there. Pain medication was the LAST RESORT. Once we found what worked for me, I had a quality of life, I LIVED LIFE, was a mom to my kids, was able to cook, clean, shower, walk my dog, SAME STABLE HIGH DOSE for nearly a decade with success!! I am a rapid metabolizer and require higher doses in order to sustain a quality of life. After the release of the very corrupt, bias cdc guidelines, my doctor of nearly a decade dropped me like garbage, I went in for my monthly appt and within three mins my world as I knew it was flipped upside down. My dr came in, said he no longer is going to treat pain pts. That his license was more important than treating pain and he was not risking his license. I cried uncontrollably and begged him to not let me go that he was putting me in a horrible position. He did not care, kept his back to me shaking his head. He handed me my last scripts that he cut way back, no weaning, no slow taper, just here ya go, good riddance. I don’t know how I made it home that day. I was left in a torturous hell! I called all over NJ searching for a dr to take over. NOONE would take me, I was treated like a drug addict, pill seeker and criminal. I was turned away from the emergency room when I went there in agony,
The dr there told me to go to detox that they don’t treat chronic pain! I was losing hope fast and getting my affairs in order and if it weren’t for a fellow pain warrior who reached out to me to call his dr, I would not be here. I do have a dr now, BUT he refuses to put me on the pain medication that allowed me to sustain quality of life,his hands are tied.

K S

My doctor retired and I have never been able to get the level of pain medication that allowed me to work, and live as normally as I had been before. I went from living my best life w/ pain to struggling daily w/ more pain and disability. It has been almost 3yrs and I am getting a bit worse each year. I struggle to through each day w/ basic chores and shopping for groceries. Before I was working out lifting weights, running 6 miles, coaching with my daughter. I was able to be her catcher, and she was pitching a softball at 55mph. Not anymore I cant travel sleep, and most of the time I cant get through a trip to the mall w/ my family. Even just going to dinner at a restaurant has become to difficult most days.

Mellissa Schwab

I was forced to taper down after being in pain mgmt for 15 years. I was expected to come down to not more than 60 mg. Per day, total equivalent from 100mcg. Fentanyl patch changed every 2 days, with 30mg. Roxycodone as needed for breakthrough pain! I was supposed to do this within a week and a half! I had a botched back surgery where my L5 disk was replaced. It was screwed into a vertebra that is cracking apart! I have a disk bulge on top of the cracking disk as we speak!
Talk about suicidal? I was depressed, had diarrhea for 2 weeks, runny nose, muscle cramps, depression, nausea, depression, cold sweats, did I say depression yet? Ugh! I was left curled up in excruciating pain on the couch for 2 weeks until I could take no more! Desperate needs call for desperate measures and I decided to take care of myself in another way. My pain is relatively covered now, I am not in withdrawal because I refuse to be tortured in such a damn inhumane way! Not fair! NOT FAIR AT ALL!
I have MRI’s, CAT scans Xrays,
All the proof I need that shows my condition causes considerable pain! I have had every kind of bullshit shot! Nerve blocks! And I even had my gallbladder removed which was totally unnecessary! I’m sick of being treated worse than a dying animal on the street! This has to end!
Not fair!!

Kathleen Bowers-Pinette

I am being forced to taper. I can tell you that every single day is worse than the day before as my hope to ever get any control over the pain I feel all day long is decreased as this “opioid crisis” is throwing chronic pain patients under the bus with little thought to how we are being affected. The pain does not get less as I am tapered.. it’s increasing as my dose decreases. This is barbaric.

My chronic pain is due to degenerative disc disease, sciatica, spinal stenosis, and arthritis. I did well for years on slightly less than 90 mme in daily opiate-based pain medicine. This level took years of trial and error, and it was right and adequate for me. At outset of 2019, my primary care doctor/prescriber, following orders of his clinic superiors, force tapered me abruptly to less than 50 mme, and said further cuts almost certain. (Told me he was likewise coerced to force taper even cancer patients!) Pain doctor no help; a complete opiophobe eager only to give more useless steroid shots, he essentially dismissed me as a drug addict just for insisting the meds help. Consequently, I suffered more physical pain, more depression and stress. I’d cut back on cigarettes, but smoking increased with the pain levels. I got far less sleep, and much less exercise and general functionality, as everything just hurt too bloody much. Marriage tensions impacted, with wife having to suffer my additional suffering. Huge drop in trust of medicos generally. Lucky me, I soon after got a new and compassionate pain doctor who restored my pain medicine to earlier, modest level. He’s now my prescriber. I’ve had recovery of most functionality (though it seems like some lasting damage done). Less pain and depression, as is logical. Better sleep. (Latter thanks in part to modest use of cannabis product, which was forbidden by primary care doctor, although it’s legal in my state.) Also, after 40-odd years smoking tobacco, recovered and adequate pain management made it possible for me to quit seven months ago. By the way, I’d also run the usual gauntlet of “alternatives” to opioid therapy. Most failed spectacularly. A few help as “tools in the box” (e.g. light yoga, meditation) but as compliments to, not replacements for medicine. It’s just so simple! Oh, and cumulative use of over-the-counter NSAIDs hospitalized and nearly killed me with a massive bleeding ulcer.

Holly Davidson

I was still being cut no matter how much pain I was in and no matter how many MRI’s, CT scans, etc, I took in with me. Basically I was forced to commit to going to a methadone clinic. I am 61 years old……I lost 30+ lbs in the last 6 months and the pain Dr. shrugged it off. They do not care! Its all about the $$ with their ESI shots. They didn’t help me on bit! How does a woman or anyone of us for that matter, supposed to survive mentally and physically after having the one medicine (yep opioids) taken from us?

The one good thing is NOT having to look at this uncaring Dr. with fake BS every month and not dealing with the worries of the pharmacy wondering if they will have my meds.

God Bless all of us!

Beth

My son and daughter both have chronic pain from PRSS1. Several years back my son was very depressed about is chronic pain and health and contemplating suicide. He was very intent about not wanting to be here. I was very concerned and brought to ER where was admitted to inpatient psych. Psych said he had no pain and if my son was to stay had to titrate him. Begged psych to talk to his doctors and pain doc but he refused. I had choice between taking son home who was actively suicidal or have him tritrated and get help at in and out patient. Again no discussion w his docs who oversaw pain and health. Psych kept saying pain meds making pain worse, it was psychological. The tritration was fast and later found out dangerous. Pain got worse instead of better psych kept telling him he did not have pain.

Next just a year ago the clinic my son has been seen at made admin decision to taper all patients bc of CDC guidelines. No referrals being given to other physicians patients abandoned. I did finally get a referral for son. I am only one that received one

He is just now 18 both scenarios have profoundly impacted him. Our relationship, his trust in physicians

Trena Lomon

In 2002 i was being treated for a condition called spinabifada and arnold chairi. My doctor then had me out of pain and doing well. Then i stepped on a piece of glass and due to my spinabifada i did not heal well. I got osteomyltis and nearly died. After fighting the 7 different staff infections n losing all of my heel bone my pain grew. Again drs in pain management adjusted my pain meds and again i was able to live somewhat pain free. Then the 90 mme came. At that time i was on 3 10 mg methadone and 3 30 mg of oxycodone a day and had been for nearly 10 years living and doing well. Then the 90 mme came and my dr immediately lowered me n quit pain management. When i got into my new dr a few weeks later they would not get anywhere near what had me walking driving n living. Not only would they not but continued to lower my meds each month. Now i am on 5 mg of methadone 3 times a day and 10 mg of oxycodone with Tylenol. And i have been told more cuts will come. I was born with open spinabifada i lost my bladder at 19 months old. I have Arnold chiari malformations of the brain w signs of the onset of hydrocephlas. I have had my right heel bone remove and i suffer from chronic non stop kidney infections and stones due to my conditions. Im sure short of cancer i have justified reasons for my pain but drs are now saying your pain or my freedom n leaving patients like myself hurting alone n abandoned

Debbie

Don’t you see, their trying to kill us. Their taking all our medicine away that keeps us stable. And now all of a sudden all the pain patients who have been on long term opioids are being denied or tapered and then we’re dying. I won’t let this happen. Even if I’m squirming in bed. I’m not going to give up. No. We need to be putting our energy into getting better, not telling our story over and over again. Because no ones listening and no one cares. They are literally trying to kill us. Wake up. Please. Can’t you see it?

Nancy Kamber

I was diagnosed with Degenerative Disk disease (DDD) at 62 years of age. I had a 3 level fusion from C4-C7 including a rod, 3 plates, etc. My pain has been constant before and since the surgery. My insurance had a $10,000 deductible so I until I reached the age of 65 I suffered using ibuprofen at a 800 mg dosage approximately 5 times per day.

I met with my current Pain Management doctor (PMD) within days after I started Medicare. I had an MRI showing DDD at C3-C4 and T1-2 which is above and below the fusion. I went through a physical therapy program. I had always been physically fit and enjoyed exercise.

I tried gabapentin and my hair fell out. It didn’t control the pain. Next we tried a non opioid prescription that was not an allowed by my insurance. Finally I gave in and tried a 15 Mcg. fentanyl patch. I was the first relief I had in years but I was not pain free. Gradually my dosage was increased to 50mcg over 2 years. I was able to play golf, walk, take zumba classes etc. In other words I was able to live an active retirement life.

Then the CDC and Governor Ducey stuck their noses in my life. My PMD told me he could no longer prescribe the level of fentanyl that had worked so well for me. He tried by prescribing a low dose of morphine. That did not agree with me. I absolutely hated the side effects morphine caused. We finally settled on a 25mcg fentanyl patch every 48 hours. I gave up golf. No more zumba. I can walk a couple of blocks as long as I return to my recliner and heating pad.

I like exercise. I liked my life so I researched alternative treatments. I settled on giving a spinal cord stimulator(SCS) a try. It’s a long ugly story complete with 8 long months of pain and scars. I had the SCS placed in May of 2019. It was removed 2 weeks ago.

I am now sitting in my recliner with heat in pain! Why? I am not an addict! I am a 70 year old woman who had a good life. I haven’t been totally pain free in 9 years but my life was good before the CDC.

C demanche

Sorry if Punctuation is off on my story. I also just needed to add that I use talk to text. Because of excruciating pain that is caused using my arms for anyting for example cutting a cucumber my pain is unbearable. Not to mention Texting typing also before I was drop down to 90 mme. My doctor took away my long-acting morphine and replaced it with belbuca. Also kept me on my low dose of Oxycodone. And Nucynta I was experiencing. Extreme withdrawals that month But because I have not Met my new doctor. I was afraid they would just think. I was seeking. More meds so the first appointment with her she was sick. I sat in the office for four hours because no one wanted to fill my scripts due to The amount I was on. Finally they found a Dr. write it for 2 weeks And reschedule the me. 4 my new doctor. She again was sick. I saw her boss. He told me. That they were going to Lower me to 90 mme. And at some point I would be on Suboxone. And if I did not like that, he would write me one last script for a month and I was done. He also told me. That he would write me a script for what I was on. But was confused why the doctor had put me on belbuca while having the other stuff. She handed me my script and it was only 4. 90 mme of morphine I was upset. Trying to hold myself together I left in tears. He was extremely unprofessional. I made an appointment with my PCP. He did not agree with his opinion and found me a new pain doctor who also did not agree. I am thankful. That I was put in another place with someone who cared but unfortunately because of the DEA he will not prescribe me any more than 90. Mme. I have been through all kinds of Therapies. TENS unit The only thing that helps is meds. After looking at my records, my new doctor told me basically I was screwed and the only thing that would help. Is meds I have extreme Suicidal Thoughts. But I will suffer because I love my family and will not put them through that.

C demanche

In 1994. I was in a bad car accident I was T-boned at about 50 miles an hour. And broke six ribs punctured my lung bruised. My spleen In 96, I was rear-ended at a stoplight. In 1999 I was hit head-on from someone sliding into my lane I was doing around 50 miles an hour. In 2003, I went to a doctor Told him And I was having a pain in between my shoulder blades. And he told me it was just stress Due to a recent divorce. So I accepted it Around 2005 I could no longer take the pain. I had stopped working. Doing anything with my arms Was extremely painful. I could not change my child’s diapers without tears coming to my eyes. At that point I got a PCP. He ordered a MRI And they found that. I had four herniated disc in my T spine. I also had degenerative disc disease. And spinal stenosis Recently, I found out that I have. A hernia in my Neck, which is causing my hands to go numb. I started pain management my pain Finally got under control Not gone, but a lot less noticeable.. I was doing things I could not do before I was on a 150 mme My pain level was at at 3 on good days. My life started getting better. Over the years with a few adjustments and slight increases my pain improved I was on around 390mme steadily for years My life was great. I got remarried. My pain level was down to two on a good day. And I would take that all day. Even if it was just for a few days a week my highest pain level was 5 in 2017 My doctors told me they would have to start tapering me. They had no choice. Luckily, I had good doctors and they only took a little away pain level went up to Three or four on a good day. There wasn’t very many of those. At the end of 2017 I was on about a 190 mme My pain level was no lower. Then a 5 on a good day. Which was rare. To have a good day. My life just about stopped. Was not very social couldn’t stay very long at family functions. Started gaining weight losing muscle I am now. On 90 mme. My life sucks. And my family wants me back. I can no longer take it.

Lj dorris

I have had severe pain starting as a young child. I now have been diagnosed with Scleroderma/systemic Sclerosis plus overlapping issues. At first i would just endure. Except my issues worsened. I was active until my c-spine created to much pain to run etc. I can not take NSAIDs due to stomach bleeding. Then they tried shots ( I laugh at this because one shot does not beging to touch entire body pain). I was not allowed a spinal stimulator trial because ” putting in the trial equipment I would not receive enough money to cover my costs.” I never wanted to be on medication.Yet I actually was cohereced and convinced it would be fine. I am now on Opiods and my life has not improved much, because I fear raising dosages, I fear being on them and then the Doc saying no more, and being stopped cold turkey. So I have tried to taper off the drugs on my own because of my intense fear of withdrawing physically, not mentally having gone through numerous times. I still have pain, immense debilitating pain where I have to crawl on all fours to make it places in home or outside. The pain is so severe I think of euthanizing myself almost every day. I don’t only because I will never hurt my siblings in this way. I live by myself totally on my own. I was able to get off all oxycodone on my own. I still take Norco and some methadone. In trying to get off of this I will go through agitated throwing my body around and violently thrashing around rocking my entire body. It takes every bit of strength not to bang my head and pummel my body trying to stop this issue. I will become extremely hot, my blood pressure goes up, I become sick to my stomach. I spend most my time wondering why I can not be helped. I don’t dare use more pain medicine due to loosing the physician prescribing it to just being stopped. My life has no joy, no meaning, nothing but fear and pain. My life is literally hell on Earth. I walk in my sleep & have night terrors. All started when trying to stop on my own.

Frances B Hunt

I apologize for the typographical errors. I failed to mention that the twelve month taper is more humane than the 3 week forced taper.

Frances B Hunt

Ed, I was a Healthcare worker for 30+years (Diagnostic Medical Sonographer). In 2003. I had near syncope event driving my car overdose over a bridge. I was misdiagnosed with partial complex seizures. I had memory lapses and lost my job because I confused patient information. I was having pain issues; couldn’t get comfortable. My pcp diagnosed my Fibromyalgia in 2011. Anyway, I have experienced 2 forced narcotic takers. In 2016, I was tapered in three weeks. If I hadn’t found out about Kratom, I wouldn’t be here today. The pain was so unbearable. The second taper was in 2019, over a period of twelve (12) months. The pain I still have ranges daily from a ‘5’ to an ‘8’. I have done 2+ years of Water Aerobics, Mindfulness, and Chiropractic Therapy for one year and my pain is still present. With my new Health care plan, I will be trying Massage Therapy and Acupuncture. Anyone else still having Fibrmyalgia pains?

Mary

My forced cut off pain medication was Friday when a horrible storm came thru and knocked the power out at PAs office. She didnt even have any ink in her printer to print any scripts. So Friday 2/7/2020 was my last hydrocodone. I called emergency doctor on Call Saturday morning and he told me he couldnt help but go back to regular doctor Monday morning or try urgent care or ER. Too much sickness in ER and urgent care doesn’t prescribe pain meds. So today I went to regular PA dr originally told me she still had no ink In printer and couldnt help me. I called main dr office and was told to go back to see my PA and he. Dr. Willis the overseeing MD would escribr my meds. PA sent message, I called twice to main dr. Nurse assured me that if I saw my PA he could refill my meds. Its 8:38 pm Monday night and still no meds. No notice nothing. Just cut off. I’m in extreme pain, head ache/pressure stiff neck and severe muscle spasms in neck and across my shoulders. I’m absolutely miserable with pain and withdrawal I guess. I’ve been on this combination of meds for 6 years and they help me get through each day and life in general. I dont even know what to or where to turn at this point. My diease is not curable, believe me I’ve tried. Even had brain surgery which in my opinion made it worse. I need HELP NOW!! Unmanaged pain is a big issue of depression to return and days and weeks in the bed. These opioid laws are gonna kill me!! Any HELP you can suggest? Desperate…