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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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…

Karen

I was forced to taper my meds! I have COMPLEX REGIONAL PAIN SYNDROME. it started just in my right foot and ankle. It took 5 years to be finally diagnosed. Since then it has spread to both legs from toe to hip in the right and toe to knee in the left. I was on oxycodone 30 mg 6 a day and methodone 10 mg 4 times a day my pain was controlled. I have a back stimulator implanted which helps very little and since the whole opioid scare my doctor has tapered me down to 1/2 a methodone a day and oxycodone 20mg 3 per day and he gives me sympathetic nerve blocks which I have told him they dont help but he insists I have them every other month. I am in so much pain now since being forced to taper there are days I cant even get out of bed the pain is so bad. My 33 year old daughter is my care giver and when I was on my normal meds she was thinking about getting a job and starting her life since I been tapered there is no way she can do that. I feel so devastated. Humiliated and hopeless.. Its not right to have pain warriors to suffer and comment suicide because of being under medicated. Didnt these doctors take a oath?

Marie S.

November 4, 1997, I was in the backseat of a work car, Chevy Cavalier, when we were rear-ended by a Ford F150 that was going 40 – 45 mph on impact. My co-worker threw her arm over me to “protect me”. The doctor said I was injured due to her “protection” and to never do it to any adults or children or they could end up with a herniated disc like me. I had surgery an L5-S1 bilateral cage fusion 8 days before my 21 birthday. I have failed back surgery, DDD, severe depression, social anxiety, nerve damage down both legs, and a herniated disc in my neck (another rear-end accident in 2004), etc. I was on just the right amount of Methadone and Roxicodone (for breakthrough pain) to be able to comfortably take care of my family and that’s it. No gardening or walks or cutting grass. Once the opioid crisis hit my doctor cut me down 50% right off the top and 1 month later he took another daily dose off, and then another. Now I’m down to 2 doses a day. Now I’m reduced to laying down most of the day and my husband is cooking and cleaning and taking care of our kids. I sit up very few precious hours of the day and go nowhere but to my doctor’s appointments every 3 months. I can’t even do the work at home jobs to make a little income. I feel very useless now. I can’t get SSD because I didn’t have enough work credits in. I was 20 and had no chance to build up credits but the SSI office doesn’t care.

dismay

My doctor just read rthis letter from CDC and started cutting my dose immediately, on the spot. He dropped it by one quarter, two months later he dropped it to one half what it was. I could not tolerate it. I went far away to an inpatient facility for two weeks to adjust. This was after careful screening to be treated like a chronic pain patient with a significant history of complex developmental trauma and PTSD in 2009 during cancer surgery. When I gort there they treated me like a drug addict. They did not contact any of my providers and the psychiatrist doing to the intake said “SHUSH!” to me when I protested. Then my insurance company, which had preauthorized it with me refused to pay the 34,000USD bill and my credit became destroyed. It took me two years before I called and asked for a patient advocate. Byu then I collected all the data for full utilization rebiew. I spoke with the advocate for weeks. I wanted her to get to know me, understand my story, that I was NOT a drug addict but a chronic pain patient with enormous trauma in my history. The medication taper has resulted in more trauma. My pain has not been covered one full week. Every week I spnd 30 hours in pain and withdrawal. Then when I get my next script it takes more than prescribed to get covered at all. Then when I can drop the dosage back down, there is not enough to cover me for 7 days. On and on it goes. Before this happened I was stable and maintained on the same dosage for yearts. If I could get 6 more pills I would be covered. But I cannot. It is destroying my mond. I have insomnia for the first time in my life. Three nights no sleep at all. Three nights 2-4 hours of sleep. Then withdrawal and pain. One night and I sleep a great deal. My memory is destroyed. I got diagnosed with dry mouth, lost all my teeth. Need 50 grand in dental work. It ruined my work life. I still work but my patients left in droves. I lostso much weight I looked like I was about to die. It remains a massive nightmare

Steven

Thank you everyone for sharing. I thought I was alone now for this torture. Is anyone allowed a small bene with dose? Guide says avoid where able. I am barely hanging on. Everyone God bless.

Elizabeth Rogers

I take a low dose (45-60 MME) of a mild opiate, but my HMO recently reassigned me to the 4th new PCP I’ve had in 4 years; my long time doctor quit in 2016 and the other two changed jobs. I haven’t met my new doctor yet. I’m 83 and have been a fully compliant pain patient for many years. I have several medical conditions that are not “curable”.

I have tried 14 different non-opiate medications as well as PT (many times), massage and acupuncture. None of these was of significant help. Most of the antidepressants I was compelled to try produced unpleasant–often downright alarming–side effects; I really do not want to be forced to take that route again. My digestive system is unable to tolerate NSAIDs. I walk daily and try to stay somewhat active, but it is more difficult as my body continues to degenerate, resulting in more pain, as I age.

I strongly believe that I should be able to live out what remains of my life with my pain controlled–note that I said controlled, not eliminated. I have lived with some degree of pain most of my life due to a congenital spinal malformation that led to 3 back surgeries in my youth. Thanks to the surgeries and low-dose medication periodically, I was employed until I was 78 and never needed to go on disability or become dependent. My spouse (90) and I live independently in our own home. Should I become disabled due to pain, we could lose vital agency over our lives. That would make NO sense from a human or societal standpoint.

However, since the “Guidelines”, I have lived in constant fear and anxiety that I will be arbitrarily cut off or involuntarily tapered especially with each new PCP. What will this new one do to me? I’ll find out soon enough since I requested a refill of my Rx a couple of days ago. High anxiety = increased pain!

Alan Edwards

Mr.Coghlan, all the comments with one exception, were nearly identical. The government is in overreach mode. People who were overachievers and work are bedbound and screaming by the stupidity of an infinite number of government agencies. Effective pain management for IPPs can be accomplished by a
.
The standout treatment, naturally, is opioids. A patient encyclopedia of comments below, is far more truthful than current medical propaganda. I fought 50 years of disease and pain equal or beyond cancer pain. Doctors and the government have targeted Arthritis, Back and Spinal Cord diseases as expensive to treat, and the pain minor.
A revolt against government health disservices by Inractables is in progress but the government has the tasers and guns. And is using them in the fictional drug war, against the weakest of patients afflicted with arthritis and other underestimated afflictions.

I am an undertreatead IPP and have been stunned by the stupidity of doctors, pharmacists, physical therapists and the like since my post-surgical screaming at 7 years old for Cerebral Palsy.

Christ is the answer. The Bible forbids torture and condemns the corruption and profiteering in existence. So where are the Christians?? And why are community politicians, police, physicians and the elite IPPs being treated far differently than those below? They are not denied simple, safe, opioid treatment.

NPR is to be commended for giving patients in severe pain a small voice that may penetrate the closed minds of doctors and those who carry the guns.

Gwen Hanson

I’ve had pain most of my adult life. I’ve been treated since 18 for muscle spasms and pain. At one point they decided I had fibromyalgia. , chronic fatigue syndrome, I do have trigeminal neuralgia. , I’ve been told I have Hep C pain syndrome. But some doctors don’t believe in it. , what disabled me was the medication I took to kill the hep C in in about 2001. I never recovered from that 6- months of treatment, I still vomitFor no reason other than a exertion. My skin feels like it’s on fire and you’re pressing ice cubes against it. , I can’t wear long sleeves or leggings because my hair follicles feel like they have Hot Nails being Pulled back and forth by the fabric. A Wrinkle In the sheet Is like laying on a knife blade! I am disabled Do to my chronic illnesses. . My doctor of 30 years retired, he called the three doctors in our area that accept Medicare trying to find me a good fit, two of them wanted me tapered. Before becoming their clients but also completely off my Alprazolam and not to get back on it under their care. .. The end! Now I’ve been on Alprazolam as needed On and off throughout my life. And right now they’ve added PTSD to my panic attacks, generalized anxiety etc., Every medication was tried before we settled on alprazolam. Just like every other medication was tried before we settled on opioids. So my retiring doctor found a doctor who happened to be at a Medicare only facility, who after hearing about my conditions Etc agreed to keep me on the medications. That have been working so far for the last decade. Couple months into my new Medicare only facility they bring up Suboxone. , I say, no, the next month, Same thing, tapered again, I mentioned being forced to take Suboxone. Then I get a voice mail Stating that “the facilities, opioid oversight committee wanted me tapered further and then on to the suboxone program,” They’ve not even giving me a physical or looked at my conditions listed. I found this out at a specialists appt

Jennifer Amaya

21 years with Thoracic Outlet Syndrome, for 15+ I was on 2-3 Soma per day, eventually o 5mg Diazepam overnight instead of soma because my version of TOS tends to cause my muscles to seize up so badly, especially overnight, that I go completely painfully paralyzed from the neck, down. 2.5 years ago my doctor starts having to force us all down. Takes away diazepam because I shouldn’t be on 2 different benzos. Within 2 weeks I had an episode waking up one day where my rib got stuck, I did an arm circle, and the muscles were so tight, they wedged that rib up into my clavicle and pushed my clavicle out of place. While trying to fight that (still fighting it, btw), been in PT indefinitely for 2.5 years and have seen so many doctors I lost count, my doctor gets a 2ND DEA investigation (he won the first one after paying $50k to a lawyer), he decides, screw it, he turns in his medical license. Enter me into the medical system, where my first new primary doctor immediately removes me from Soma w/out examining me and puts me on Baclofen. First, it never worked on my muscles. Second, after a few months I was slightly suicidal. I finally looked it up and discovered it was a neurotoxin. So it did nothing for my muscles and it made me crazy in my head. Thankfully another doctor switched me to Tizanidine. I no longer want to kill myself daily, but it still doesn’t work on my muscle spasms well enough. So in Dec 2019, I go paralyzed in bed again. I take a Tizanidine immediately, 2 hours later, still paralyzed, had to call paramedics to come get me and carry me in a body bag into an ER, where I was literally treated like a faking-it drug seeker. I am barely on any meds at all, can’t get one more per day, which would probably fix this nonsense, and am becoming more disabled daily. This is absurd.

Ms Melody Oldham

I was given 3 months with meds at half dose and then cut off completely from the oxy contin pain meds. that was last July. I can barely move, I have gained 10 pounds, some days I just lay here and cry my life is nothing now

Gary

Unfortunately Ed,
Your call too force tapered pain patients to tell their story will never be heard by millions who were force tapered unless you can magically resurrect them. Since the 2016 guideline there have been millions of Americans over 65 who have died of heart failure. In fact 10 million according to Kaiser Permantente. 10 million more than normal numbers. In addition to that at least 60,000 veterans in the last 10 years and pain patients have been dying in droves. Only the CDC knows how many they have murdered by a denial of care. Good luck getting them to tell you the true numbers.

Josanne Dyke

So I injured my back 5/18/05 and had two level lower lumbar fusion 6/8/09. Was off opioids for few yrs then started having more probs and more pain so my PCP put me back on them. I got my med marijuana license which did somewhat help w the pain. But for one I cannot afford the outta pocket Dr visits or the minimum $250 monthly dispensary visits. Well bout a lil over a yr ago my workers comp ins co started forcing my Dr to take me off ALL my meds. Not just my opioids. I have a degenerative and herniated disc above my fusion site, and more herniated and degen discs bout where my bra crosses my back, have peroneal nerve palsy in both legs, neuropathy, and complex regional pain syndrome. Which in and of itself can b more painful than my back at times. Well they decreased my opioid intake in half by amount of pills and by mg’s. They decreased my muscle relaxer and have taken away my naproxen for arthritis and swelling w the nerve issues. I used to b as active as possible. I used to b able to take care of my house w lil to no prob. No I feel lucky if I get one major thing accomplished a day. It takes me half a day to just clean one room. I went to get groceries this morn. It was horrible. Cried on way to store, cried in vehicle in parking lot when had gotten groceries loaded, cried all way home, cried when got home sitting in my vehicle for 10mins, and again during and after groceries taken care of. I can barely move today at all. The pain across my hips above fusion site and in mid badck is absolutely excruciating today. The ins co told me and my Dr they were doing this to increase my quality of life. So far all they’ve done is stomped on it and taken any good quality of life away from me that I had. I need so much help now to do lil tiny things cuz in such pain I feel like a burden. Feel like I don’t matter. Feel like my pain is a damn joke to ppl esp the ones forcing me off my meds. And now my PCP office no longer accepts comp ins so now I’m trying to find new Dr

Michelle R Bannasch

I had been with my PCP for many years on a modest but tolerable amount of pain medication. They told me in August 2019 that their practice was bought out by a new company and they have decided to send all CPPs to PM for evaluation before they will continue to prescribe. Initial evaluation & every 3 months. I can not afford PM and my County ins. doesn’t cover it. They did send me to an orthopedic that is procedure happy and force tapered me (a lot) right out of the gate. I’m now suffering and mostly bed bound. I missed all of the recent holidays with my family. This is inhumane.

Brian Zbikowski

2012 got A MRI after working hurt for 34 years last 20 with no medical insurance.
The last 10 year’s took Aleve daily.
As I suspected the MRI showed serious spine problem with stenosis.
I went to A pain doctor for I had no insurance and he relieved my pain with opioids, told me my pain will never go away and will need medicated for rest of life.
I got on Medicaid, and also went and saw there doctor.
I also went to State doctor/ phyciatrist for dissabilty.
He told me since I’m on MJ he can not help me except injections.
I already had gotten A test injection by my private doctor and he had me stable on minimal pain medication.
Then the CDC Guidelines came out and wamb, meds have been reduced from 60 mme to 38 mme, cause you can’t go over 40mme now. My xanax was taken away also in 2017.
Since then my health kick I was on got destroyed to where now on 38 MME 8 years later only to have even worsening pain to where I quit moving.
Gained 20 to 30 pounds and lay 20 hours A day now and chain smoke with my COPD when I was quiting, and only had one last chance to quit, or diesese will progress faster which it is to the next COPD stage where I will probably need oxegen.
I really was trying to better my health for I had no doctors for too many years but just kept working in sever pain.
My medical bills are going to skyrocket now or DEATH will occur fast.
I’m going on to 60 this year and will need home healthcare soon.
Thanks Medical Boards for ending my independence I cherish.

Angela K Willis

Hey, how about posting an email address we can respond to? I know that many people would rather not publically say what they were/are taking and that can be dangerous too. Some people use an alias, some don’t. Thanks (I’ll try to write up my taper story Sunday or Monday night but prefer not to post it publically).

Nancy Ellicock

Hi. I was forced tapered off my already low dose of Norco (10 mgs 3x day) by my pain management doctor. This doctor decided to stop prescribing opioids to all patients due to the opioid crisis and constant scrutiny in his practice by the DEA. I was cut back to 20 mgs a day and just the reduction of 10 mgs meant I was no longer able to go to my gym because I didn’t have enough meds to cover the exacerbation of my symptoms. I left that practice when the next tapering down to 10 mgs a day began. I went to my PCP who agreed to temporarily take over but at the lower dose. I was referred to a new pain clinic who says they also do not prescribe but agreed to temporarily prescribe for me but I will be forced into procedures like steroid injections etc that I’ve already tried and failed. I have several orthopedic issues, need a bilateral hip replacements, have scoliosis, DDD, to name a few. I have pain 24/7 and am on SS disability due to pain. If I was able to receive a sufficient dose of opioids I could likely return to work. But instead I spend most of my days in front of my TV falling into a deeper depression. Forced tapering and left at a very insufficient dose that only gives me a few hours per day of pain relief has greatly affected my pain levels and ADL’s. I am unable to take NSAIDs due to digestive issues. I’ve tried and failed many other modalities and non-opiate drugs as well. I do not know what my future holds.

Jill

This isn’t my tapering story. I’ve certainly gone through episodes of reduced or withdrawn opioids over the years. This is my rant. Does Dr. Sullivan think Chronic pain patients take larger doses than necessary because we love the flavor of Norco??!! Does he think the meds are just a placebo we take because we’re too stupid to know what reduces our pain and what doesn’t??!! These are the doctors tweeting the opinions, clueless on what they’re talking about? Lord help us.

A. Gary Bryer

I am a 66 y/o male, who was dx’d with severe degenerative disk disease, stenosis
spondylitis, spondylosis, facet degeneration fibromyalgia syndrome, peripheral neuropathy, chronic fatigue syndrome, non-restorative sleep, insomnia, narcolepsy, anxiety disorder, depression among other conditions. I have unbearable pain from my head to feet and everywhere in between. (Social Security approved my disability application in 6-8 months. My long term disability was approved in 6 months. I have been physically disabled going on 20 yrs) About 5 yrs ago my dr announced he was retiring. After 3 months of searching for a new dr who would prescribe, my wife found a concierge dr, at $3k a yr (times 2, since my wife and I are both patients.) He doesn’t take insurance. In order for him to agree to take me on, I had to cut my meds by about 80%. Then the DEA forced another 40% cut. But, I needed some pain relief. My functionality was cut to the core, but I am able function somewhat. I live in fear that my next visit could be my last, which only exacerbates my anxiety and depression. I rarely go out of the house, and most ppl won’t bother with me since I can’t do the things everyone can do. I am in pain all over my body, all the time. I had to stop my anxiety meds.its not much of a life, but this is the hand I was dealt. I don’t think it’s the governments job to determine how I should be medically treated, but what choice do I have? I guess useless ppl r’nt worth saving.

2017 August my old doctor That I had from 2008 to 2017 August stated he was going back into pediactrics. He did not want to deal with the opaid crisis. If we needed to go up on pain medication we did because of surgeries. 4X a day. If we needed to go back to my normal doseage we did 3X a day of liquid Hydricodone 15 ml at 7.5/ 325 mg.
When the New Medicare doctor & the,new,Nurse Practistioner were hirered I went in to meet them both. The first thing they told me was” We need to get you off your pain medication”. They did not tell me Why or ask me why I was on it. Nor did they both not give me an complete exam. Dec 2017 they force tapered me from 1200 ml for 30 day3X a day down to 900ml a month 2X a day. April I quit cold turkey after the nuse practitioner said to me” You know Millie your making me look bad”! I went home crying & quit cold turkey. After being on pain medication since 1993. I call back for a refill & they told me that I can’t get my pain medication anymore. I can’t have Nsaids because of the Roux En Y Gastric by pass. So she called the police because childred ibuprofen is not against the law to purchase over the counter. Yet a pharmacy said I could try it. After having surgery from a failed total Knee replacement implant in August 2019.I finally got my pain medication back 5 months later. It was a toss from the Surgeon & PCP staying it was not their Job to refer me to a pain clinic so I could manage my cronic pain.
26 Orthopedic surgeries out of those surgeries I have had 14 knee surgeries. You need at least 3 doseage of pain medication, muscle relaxer, anti flammitory in a 24 hour day. The surgery in August 2019 I only got 5 ml 3X a day for 4 weeks. This is a child doseage for 7 to 9 year old weighing 51 to 69 pounds. I am 63 years old 185 pound. Thank You for letting me suffer & setting me up for failure because I could not finish physical Therapy nor could I afford $120.00 a week for PT.

Lisa Osborne

I was not forced to taper. My pain specialist has been very patient-centered and worked to establish and maintain a partnership based on trust. It was not easy, as I had a prior experience with forced taper, inappropriate medication, and brutal unsupported withdrawal with another doctor.

I feel more alert on less medication and that is the single small mercy I can pull out of my taper. It is a very small mercy. I was willing to taper because I was tired of being treated like an addict by other providers, was unsure if I was overmedicated, but most of all, was afraid that if I didn’t grab the chance with a supportive doctor, later on I would be force tapered or abandoned without meds again by a different doctor. My fear was greater than my pain. It was desperation and despair.

Now I am on much less medication. My pain is poorly regulated. My doctor does not want to increase medication, despite saying at the beginning it would be something we could do if necessary. My quality of life is poorer and I do less now than 6 months ago. That was less than 6 months before. I struggle with my frustration and depression, especially around pain and loss of things I enjoy. I try not to think about 6 months from now.

Devona Birch

Having been on prescription opioids for fibromyalgia for about 15 years, I decided to get off. Because I only took them as needed, it was easy to do. However, since being recently diagnosed with polymyalgia rheumatica and giant cell arteritis, what I wouldn’t give for them now. It’s unconscionable that chronic pain patients with legitimate chronic pain diseases are lumped together with drug addicts and a very small percentage of patients who abuse. Why the CDC thinks that it’s okay to come between doctors and their patients is beyond me. I’m soon to be 69 years old and have suffered from chronic pain diseases for 60 years. I still work full-time and I’m struggling with 24/7 pain and the disabling fatigue it causes, in addition to the other symptoms of 3 autoimmune diseases now affecting my entire body. It’s absolute hell living this way.

rebmafaith

I tapered partially on my own. Went at my own pace, and it was fine. I was ready to reduce the amount of meds I was using as I’d stabilized over the years. Then I was force tapered from about 500mme to 0mme in 6 WEEKS by the PCP who had treated me for more than a decade. I had never had any compliance issues. He said I’d failed a drug test, but the results were crazy. He waited six weeks to tell me the results. I said I could retest in 15 minutes when he told me over the phone. He refused a retest. My psychiatrist, his colleague, asked him three times to retest. He refused. He dismissed several other pain patients in the same timeframe. He sent my drug test to a busy urban hospital lab instead of the specialty lab in Utah he’d always used. It was all very suspect. To be tapered so quickly nearly killed me. I’ve never been so sick, and I have lasting health complications from the force taper. I lost a year of my life. My pain is worse than ever. Some days I just lay in bed and cry. I fantasize about getting a terminal case of cancer that will quickly kill me so my family can collect on my life insurance. I write letter after letter to the doctor who tapered me in my head, caught in an endless loop of anger and hatred. I have one doctor I can trust. The rest are jackals who have no desire to help and seem to just laugh over my crumbling corpse. Do I seem like I’m doing well? I have two kids. I have a loving husband. And I’m next-to useless to them. So to answer your question: no, my pain and health is NOT better after being force tapered.

Debra Huelsman

My taper story is I didn’t have one. My doctor retired. I found out he retired when I called for a refill on my opiod medication. I never got a letter from the office or anything. I went to that same practice for over 30 years. I was told it would not be filled and I needed to find another doctor. It took me over 2 months to get into a pain clinic so I wasn’t tapered I was dropped. It is important to mention that my chart reflects I have always taken my medication without incident. I have had to have the required (and expensive) drug testing and of course never failed never had an issue. They dropped every patient in is practice. It was awful.

Terry Johnson

I will try to be brief….
My story begins June 2002 with diagnosis of stage 3 rectal cancer. Oncologist treated aggressively. Today, cancer free, although forever a cancer patient.

2003/4
Following nearly a year of radiation, surgery and chemo treatments, the inflammation began.
Diagnosis: Seronegative RA and DDD.
The cause: chemo treatments.
It is the multiple herniated discs that took over my life. Prior to my 4 back surgeries (2008, 6/2009, 8/2009 & 10/2010), I endured numerous injections, lots of PT and several RFA treatments. I felt like a science experiment.

2010
After my final surgery (T12-L2 fusion), and no relief, I resigned myself to a life on pain meds. Until that was no longer an option.

12/2019
My pain clinic dismissed me for non-compliance. Forced to taper my pain medication. My final visit to pain clinic, I was dehydrated following a long-lasting virus, and unable to provide a quick, adequate urine sample. I provide a small amount of urine and an hour later an additional small amount of urine into the original cup, making a sufficient amount for the lab. So I was told. Two days later, I was told I was dismissed. I contacted the lab tech for additional information and informed the “collection not done correctly….temp too low”. The pain clinic response, “that is how it is done here”.

1/2020
Forced tapering was a difficult challenge. I experienced stomach pain, cramps, diarrhea, heart palpitations, insomnia and debilitating pain with no relief for two weeks.

2/2020
Now, 6 weeks later, my pain is still chronic and debilitating throughout my spine, hips and legs. My pain is currently unmanaged and my life has come to a halt. I am house-bound and live alone.

Forever impacted —

Terry Johnson

Mike Swift9n

My Taper was Forced two years ago by “Clinic Policy”- with No Exceptions firmly enforced. Since the taper, I have gone from almost fully functional to barely functional on a daily basis. I can no longer do the outdoor functions i enjoyed (walks, hikes, exercise, swimming, cycling, camping, fishing.) I have a great anxiety, depression, lack of self-worth and thoughts of suicide. Sometimes the pain is overwhelming. I have thought of going two blocks down the street i live on to get fentanyl or Heroin – I don’t give a damn about anything anymore and just want the pain to stop.