Your Reply is Requested…

Your Reply is Requested…

By Staff.

Dr. Andrew Kolodny has issued an epic challenge to the pain patient community. He wants to know -“Outside of palliative care, dangerously high doses should be reduced even if the patient refuses. Where exactly is this done in a risky way?” and, “I’m asking you to point to a specific clinic or health system that is forcing tapers in a risky fashion.”

Of course, pain patients must respond…

If you have been forced to taper and you have been harmed by a specific doctor or clinic, please issue a tweet in reply to Dr. Kolodney @andrewkolodny. If you don’t have a twitter account, now is a good time to get one.

Don’t be shy. Don’t hold back. Tell it like you have experienced it in 140 characters.

Comments for this article have been disabled in order to direct responses to be in the form of tweets to Dr. Kolodney @andrewkolodny.

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Authored by: Staff

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Trina Vargo

This is not right taking away pain meds for people that are in a lot of pain. We do have a disease pain is a disease and when you take pain pills away for the ones that really need pain pills you are hurting them robbing them killing them. Is this what you want is to kill us so that the illegals that give out heroin cocaine meth that kind of stuff is going to happen crime is going to Skyrocket people are going to be suicidal, you’re going to see more deaths than ever before who is going to be satisfied then. Nobody is really looking at the positive. It is easy to judge someone that is in pain especially if you’re not in pain or not having to take these pain pills you have no idea what it’s like. If you take away someone’s pain pills because they’re in so much pain they can’t get up to brush their teeth or wash their hair or make dinner. because they don’t got no pain pills, they’re going to be sick or going to be in bed they’re going to want to die these pain pills is what will save somebody’s life and help them get out of bed make dinner and take a shower.
Please don’t take our pain medication away.
There’s going to be a lot of depression suicide rate.
depression and pain goes hand in hand there’s going to be a lot of bad things that are going to happen if you take pain medication from the ones that really have pain disease.
God help us all.

Debbie De Anda

Honestly what do we (everyone in pain need to do to save our sanity and well being) to do legally? I will travel anywhere to fight this BULL[edit] wanting to take our MEDICATION for pain away. Have any suggestions?

RichB

Unfortunately for me I started my chronic pain to late for help since the CDC “guidelines” had already gone into effect. Pain from spinal injury as well as nerve pain. I am in the 10% who most pain medications don’t work well or at all due to a missing liver enzyme.

99% of the pain specialists I’ve talked to only do injections which being on blood thinners can’t be done. The remaining ones won’t even try because it would require them prescribing something outside the CDC guidelines which they all take as law now so they won’t loose their license. So my choice because of the CDC and DEA is either suffer and rot or die.

They wonder why the suicide rate for chronic pain patients is starting to surpass the overdose rates.

Dee

After 12 years on same pain medication with same doctor my husband is being weaned from 120 mg to nothing in 30 days.

He is being cut off due to the CDC guidelines.
He is on methadone because it is the cheapest, best for long term pain medication that could be found

He has osteoarthritis of the knees and spine. Significant effacement of the CSF. Bi lateral foraminal stenosis. Foraminal nerve root impingement. Spondylosis of the spine. Both of his knees need to be replaced as they show bone in bone is XRAYS. Also lumboscolios. He needs to have his spine fused but is not a good candidate for surgery.

While CDC guidelines were initially meant for primary card providers; Pain Management Specialists are now using these guidelines to cut people off of their medication.

(A year ago we were told he had nothing to worry about because the guidelines were only for PCP’s)

States are also interpreting as law.

So…my husband will transition from 120 mg to nothing. 120 mg in a month?!

There is a Dr Thomas Kline MD on twitter. He is trying to help people. Perhaps you could discuss with him?

Thank you, Dee

Kel b

After 10+ yrs of same dose. Fentanyl. Was doing great. Never missed a day of work. Professional manager of multiple properties. Work 70 hrs a week and on call 24/7. One day primary says can’t help you. Go to this pain clinic. Immediately without looking at me or years of records and procedures. Failed procedures. And 4 Drs in 10 yrs due to Drs moving on to other careers. All agreeing on treatment with some varying additional treatment attempts and failing. As long as I was taking care of myself physically and mentally, working, living alone. Doing better than the previous 15 -20 yrs. They all agreed this was best for me. And it was. Pain clinic charged me $1250.00 for. A drug test/ urinalysis. Are you kidding me??? Insurance denied. I still owe this bill. And this would be every month. They wanted to take away 65% of my meds immediately. I tried. I was sick and had to work. They treated me like I was a criminal. I have done nothing wrong. Compliant patient. Records to prove it. They never bothered to look. They have one agenda. Reduce all meds to zero. They are rude, mean and lack all compassion. I searched and found a new Dr. I have almost 80% of meds back. Have done some surgical injections. No change. Please don’t interfere with what works for me and some others!!! I will not be able to work this job. I live where I work. I would have to move. Could not afford this place. I have pets. I will not make them suffer too. They depend on me as I do them. Prior to these last 10 yrs, I was losing several jobs a year due to pain and not being able to work. Also trying other types of meds and not being able to drive or walk or work. Almost got eviction. And very low unemployment. I would need disability, foodshare, rental assistance, medical assistance if I lose this job. I’m 50 yrs old. I love my job. Please don’t contribute to me starting over. I’ve even been building credit back, keeping bills paid, etc. Its taken 10 yrs but without meds this is all over. I will not live in that pain again. I will not be humiliated by pain clinic Drs or by jobs firing me due to pain. I’m all for ending overdoses and abuse of meds, but not everyone is part of this. Patients need to be accountable and responsible. Drs are not responsible either. Patients need to know how to take meds responsibly. The info is everywhere on how to take them. We can’t keep blaming Drs and scaring them out of practice. We need Drs. We have to think about the future of everyone involved and those not even here yet. I was in multiple accidents. Vehicles and work related. From 18 – 30 yrs old. Some treated some not. Some very serious some not. Well now I feel… Read more »

Anonymous

Sir, respectfully replying to you because you may not know of Ehlers Danlos Syndrome which these folks with EDS absorb medicine differently, ie, it requires more pain medicine than an average person. Much more. They need it to eat, sleep, walk, sit, lay down, bathe, fix good, and yes even talk. None of which my daughter can barely stand to do with the “whatever” limit that is put on pain meds. But, here is the kicker. She may have been able to manage with EDS and this limit, but not alone, except when we found here to have Lyme disease, undiagnosed for YEARS . When she became fully disabled at the age of 23, after working for 2 years with a bachelor in Interior Architecture, I searched “why”? Interminable critical pain. Couldn’t spell or write her first name of 5 letters. I asked MD after MD, does EDS cause bone pain and major neurological breakdown? No. Cleveland Clinic, top neurologists, rheumatologists, orthopedics, none found it. I asked for Lyme tests since a friend of mine in Rhode Island said “it’s Lyme, has to be”. I finally found an LLMD. He ran the Igenex test for Lyme. The CDC called our house BEFORE we went back for results from the LLMD. Positice. The LLMD us tge word “colonized”. With Lyme indiagnosed, depending on the types of bacteria one gets ftom a tick, it can cause death, paralysis, extreme unending pain. She will be 32 in 3 days. All these years this pain could have been managed except for those whom are lofty and assume they know it all. Do you have a child suffering from pain so severe it is as bad if not worse than cancer pain? A child you have had to feed because they cannot? A child who can only whisper for the pain? The Lyme people have zero help. There are no insurance paid treatments. The government will not help with how to prevent the death of B cells as a result of Lyme, much like the T cells from AIDS. Lyme on top of EDS. When I die there is no one to take care of her. She lost all friends. Not a single person wants to date this very beautiful caring loving smart young woman. Would you please try to help us, the families whose grief does not end. I lost my daughter years ago. All I am asking is some help with pain meds so she can live enough to try to take care herself minimally, have some friends, go to Graves and put flowers, walk in a park, shower daily, not suffer 24×7, like it has been for 8 years. It has torn my self, my parents to shreds. How can I take care of my elderly parents? I can barely call them, much less see them. The general society is making people that suffer take their lives because of the poor child rearing, of those on drugs. It is not society to… Read more »

anonymous

wish we could like posts that really speak to us… just a though..

my dr said they are concerned i will die in my sleep ( due to antianxiety meds as well as sleep apnea) – i simply told them id rather die iun my sleep peacefully having been able to accomplish even minor things like get dressed or feed myself, my frequent bathroom visits, sit in the yard , color a page for my granddaughter i cant see since i dont wish to scrae the kids ( very young not old enough to understand why does huging grandma hurt her ) without pain, then go to bed every night which i do now since meds are so low pain is constant and cant do some things i need to do like my exercises daily for my heart and fibro, and is going to keep getting worse as they get me to no pain meds at all. i go to bed BEGGING the good lord to PLEASE take me in my sleep…. what kind of life is that..??????

they even have the gall to tell me my pain will lessen when meds are gone since i dont really have pain. what a crock of bs! i dont like to wish harm on anyone – its against my oath but if they could all get fibro or other chronic pain coonditions i would not shed a tear for them ( but we all know theyd just get dr friends to write scripts and be fine… ughhh..) shame shame shame on them all….

anonymous

they are creating a whole new form of “drug addict” imho – i dont know about me yet – i hope i wont – but knowing it wont be long before im unable to get out of bed without eexcrutiating pain, unnable to do even simple things i can barely do now, brush my teeth hair etc without pain, we will be forced to get illegal meds… pills are the most expensive , pot well not sure how much it is but will it really help and whats left going to harder cheaper stuff like meth.. i pray i can stay away from that.

but then those who wont or cant afford illegal stuff , the suicide rate will skyrocker imho. ive already been trying to find out more about oregons assisted suicide since have family there maybe i could get them to let me live there so could use the system…..

by the time they realize thier mistake it will be much to late for many.. on chats ive heard of 2 who ended thier lives cause they culdnt take the pain…. such a shame on society that we are being forced to live with real pain because there are igjits out there that do bad things with thier like not take em sell em causing other idjits to die. the sins of the minority are trampling our rights as a majority.
ive written my senetors congressmen and the whitehouse – all i get are assanine form letters telling all about the epidemic and no drs shouldnt leave in pain but yet they must – its the law of the land. ive even requested areal answer not a form letter from all and whatd i get – same damn form letter… so dont think writin em which ive done a dozen times since started weaning me – they doont care…..

praying for a miricle for us all… god bless everyones week……..

Debbie De Anda

That is [edit] that we people in pain have to deal with the dumb [edit] government controlling what dr.’s should be controlling. I will kill someone or myself if I have to deal with my pain with nothing. They may find that’s what we all would do. The government and these dumb [edit] that have no clue what pain really is need to shut the helll up about helping ppl in pain.

Andrea Trimble

Seventeen years ago, my health started going down hill. Within one year, I was diagnosed with Hashimoto’s disease, Fibromyalgia, Rhuematoid arthritis, Type 2 Diabetes, Diabetic peripheral neuropathy, Hypertension, Depression, Panic attacks & anxiety. I’ve been in 2 pain clinics, one after the first closed. But then the 2nd clinic closed without notice and I barely made it in to get my records & 2 month’s worth of pain med scripts. Since then, I’ve been trying to get into another clinic. My primary doctor had been helping me by prescribing pain meds for me in the interim. BUT… I was told my last scripts were it, there would be no more… so I was/am forced to go thru opiod withdrawl cold turkey. I ran out of my meds 2 weeks ago and by day 2, I went to the ER because I couldn’t handle the withdrawl and my Fibromyalgia pain coming out with a vengeance. It’s been 2 weeks, I’m completely miserable and just want to give up because there aren’t that many clinics in my area. And the one that are farther afield I can’t reach cuz I don’t drive due to having vertigo. Guess that’s it for me..

Don Davis

Kolodny is one of those reaping huge profits from the unmerciful & cruel war on patients
who have a painful medical condition. I wish he could see my wife struggling daily with
a severe case of R.A. Many of these profit seekers have never had a serious illness or injury.
May they or their loved ones reap truly what they sow. I HOPE that is. These so called do-gooders .yes. the politicians .media & Dr.s have caused a lot of people undue suffering. I HOPE
to soon hear of some people taking a stand.Write your state & federal reps. I am not saying
there is not an opioid problem but please do not punish those already living with affliction.

Ibin

Jesus help one and all that are REAL patients with pain. I have been a pain patient for over 20 years. Two fusion surgeries that have ruint my life and the surgeon calls them…… a successs. I agree that the pinched nerve pain is in fact better but, I now have far worse invasive surgery pain that NEVER stops, With the help of methaadone, after the pain specialist realized that, he placed me on Methadone over 15 years ago. While the pain still never stops, I can still work, and sleep most of the time at night. I have had so many narratives of people in far worse pain than myself and I pray for the millions suffering worse because of 90 mme daily maximum. I can NOT believe that the expertise of our providers have been over ruled. Even with documented, patient tested, ( MRI’s, CT scans, Nerve Conduction tests) examinations, and patient surgeon / agreement that NO other surgery or ANY further or different treatments can be done to help relieve never ending pain. Patients that show zero negative health deterioration, a better overall life with social activity able to be done and with many patients, employment still able to be achieved. With one swift stroke of the pen, millions of patients with pain have been reduced to as much a 80 percent less medication with 90 mme daily, maximum to an unbearable life. People that would actually rather be in the next world than be here. All because the patient “may” abuse or misuse their personal medication after decades of documented use of opiate medication. Our government has limited our providers from using ANY judgement on their own even when examining their patients once a month or possibly every eight weeks. Even if ONE of the authoritarians of the CDC mis-guiding- line had to live the extremely difficult life of the patient with pain even for one month, I guarantee such an asinine decision of 90 mme would NOT have even been considered “for one and all” patients with pain. Patients that have for years and decades been able to realize that life……could be worth living. A patient in the county I live in, took his own life just after Christmas 2015 because he was labeled a “drug addict” just because he could not receive just enough medication to bear eternal pain. Incurable pain after he had been grossly reduced after decades of some amount of relief. He had zero other addictive habits yet he was dismissed from his management clinic,. He attempted to get his doctor to help him with in excess of 90 mme daily but, his physician refused because of blackmail from the DEA. He went to the local hospital, laid down in an empty room and refused to leave until he received some attention. He was sent for psychiatric evaluation for 3 days. His vitals were within perimeters with the only questionable vital, his blood pressure which was high/! No S$$T! he was… Read more »

anonymous

to those without troubles yet – im happy for you but dont get content – i thouth my dr would never do me like that – but did sending me to “specialist” pain clinic which states right on thier wall ( as do all our dr ofices and hosp – no narcotics will be prescribed! ) today i was told she liked me and thinks imn ice but im to needy so id going to follow regular pain drs ideas ( all stuff ive been doing for 30 yrs plus but dont help ) and start taking me off meds more quickly cause i have to many excuses that my pain is increasing to much – umm only excuse is they have taken away to much and i cant keep it even minimally controlled anymore. i have us all in my prayers.. good luck i hope it doesnt happen for a while – its evil whats being done to us because there are those who dont do it right.. as with most thing theyve taken it to far to the other side, no middle… dont adress the addicts or the liars who sell it instead of taking it, just hit everyone… 🙁

anonymous

heading towards dark thoughts as pain is getting so out of control and im told have to get off ALL narcotics, wont be long it will be near impossible to get out of bed.. yet while decreasing pills they put a patch on that dos little to control pain since it does not come when increase activities when more pain so need more and causes falling asleep sitting up cause its a steady dose which i cant control by not take if comfortable take less if not as bad or take the bigger dose when pain increased.. had to quit driving since started dozing at wheel and dont want to loose license… we are being forced to look for dealers or into things like oregons assisted suicide regulations since exteme pain should not be something we should HAVE to live withh ( and yes tried all 4 meds avail for fibro with severe eactions – had therapy hooked to machines till could do breathing , meditation and other relaxation techniques “correctly”, chiropracter , pt, everything out there, etc tc etc over last 30 yrs before even got narcotics! and since been on as new meds came out… ) i was stable and doing ok till all of a suden one day just told you will be weaned off completely… just today i explained re 24 hr dose v taking oral prn and was told not keping orals and eventually patches will be gone too… its not fair when we have followed our contrats never failed our testsings when asked to do so etc, or even never asked for increase inmeds!!!

Crystal

I was thrown off a motorcycle at 80mph and fractured 20+bones. Had my lower gi ripped out and has never stopped hurting since. Ive had 2 drs. In 2 states take me from 60 mg oxycodone daily to 0. One blacklisted me insisting she never agreed to.take me as a patient, dr. Daly in gurricane, utah….if u never agreed to take me as a patient how did i get the prescriptions….from you??? Then dr. Patka in augusta, ga did this bc i tested positive for marijuana….which has cometely stopped the seizures from the brain injury i got during same accident. Now cant find anyone to write for me….all bc i treat my seizures with pot. I barely eat and weigh 87 pounds bc of my pain issues. The government only cares about junkies apparently.

Debbie De Anda

This is [edit] that the government and the doctors are such ignorant [edit] to our pain
I hope that you government officials and you doctors that don’t give a [edit] to people’s pain have something happen to you or one of your family members so that y’all experience the worst pain y’all could ever experience then maybe you [edit] will get it. WE NEED PAIN MEDICATION FOR OUR PAIN. QUIT [edit] OUR LIVES UP . Your making us want to kill ourselves dealing with our PAIN.

Candi S Wisconsin

I look at the reports on how the “opioid epidemic”, has got to be stopped and addressed. I am, along with millions of other Americans, are on the other end of opioids.
I am on the end of the chronic pain disease epidemic. As the CDC, DEA and Medicaid and medicare, and numerous other government associates, are blaming Doctors for the over prescribing of medication, NOBODY, is looking at or reading the statistics from chronic pain disease patients. How about not addressing these drugs as dangerous and addictive. Let’s look at them as lifesaving and medically necessary for the million of Americans in chronic pain. Chronic pain is a disease. It is now becoming an epidemic.
No other disease medication is scrutinized. Chronic pain is a disease. We as patients are being denied, dismissed and overlooked by our drs due to all the scrutiny associated with treating chronic pain disease. Our doctors are afraid to treat us adequately. We have a disease that medication is readily accessible to us and we are being denied. We pain patients are truly being discriminated against, due to people who have used heroin, illegal fentanyl, and placed a blame on anyone but themselves. This is a witch hunt for drs who prescribe life saving medication and pain disease patients who benefit from this medication.
We have a chronic disease. We want to be able to take care of our homes, our children, our selves, as much as possible, but without access to our, potentially, life saving medications, we are unable to do so. We want to live not just exist in pain 24/7.
We need the government agencies to look at the real statistics, not the hand picked.
We need help. With all the headlines, topics and stories on how opioids are bad, let’s look at what good they do for our disease of chronic pain and the million of Americans they help.

Anonymous

Yale New Haven Pain Clinic has stopped taking new patients until “this opioid witch hunt dies down” Their board of directors is frightened of the backlash.
Legitimate chronic pain patients can not get care because junkies are directing our laws and lawmakers are ignorant and/or looking for bandwagon votes.

Noel Ciancio

I was not tapered at all. I had been seeing a Dr for over a year when I was dismissed that day of my appointment. On Dec 31 this dr and I were having a discussion in his office , and all was well. He had decided to up my dosage by one more pill per day , 30 mg if Oxycodone . We were actually just finishing the appointment and talking about my new dog that I had gotten because I felt I needed the protection now that I was not able to fight a would be predator on my own. He had offered his wife for her services with my new dog (stating she trained them in the side ) . She also works with him at the clinic , and happened to enter his office as this conversation was happening . The next month I was discharged the day I showed up for my appointment. I added for tapering and to speak with the dr to give explanation of why I was being dismissed from his practice and was denied both . This was the Simpson clinic in kingsport TN. I can only guess I was dismissed because his wife felt I was a threat .

ROGER JACKSON

KAISER ROSEVILLE COMP PAIN CLINIC HAS TAPERED ME TOO MUCH. AND GOING FURTHER AGAINST MY WILL.

N Giovanni

I recently moved my mother from Atlanta,GA to Libertyville,IL She is longtime pain patient (22yrs) fibro, rheumatoid, scoliosis among many more issues 3 joint replacement. Dr. Eli Soto @millenniumpaincenter first visit cut her off 18 methadone per day to 0 “said it would be fine b/c she just had intrathecal pump implanted” I told him he was being reported on violation Hippocratic Oath/ potentially fatal results from his prof. Medical training decision. We have since moved on to find a wonderful compassionate neuropathic pain specialist. Private practice highly recommend in Chicagoland Dr. Michael Rock

Deborah babcock

I was taken off Percocet abruptly by dr dewong at oregon medical center and also banned from using any of the Dr in that group because I missed appt with Dr ruchiensky before she moved and dewong took over her spot..now,I can’t even get pain meds for my chronic pain issueS..riverstone clinic is who I’m with now and they told me only cancer patients can get pain med fro. Them..its a lie..they also pop random drug tests on me and all comes up neg for everything but still wants to let me live in pain..they have stopped my prescription for anxiety and panic disorder as well..but they will give depression meds out like candy..im not depressed I’m in pain !!!

The V/A system in Fayetteville AR. Every person on pain meds were either reduced or discontinued. In my case it was by 17% and the amount I was on I had been on quite a long time and was insufficient to keep up with my pain. I have had 23 broken bones and 18 operations. I have Chrons, been diagnosed with Fibromyalgia and on and on and on. I finally got a chance through the First Choice Program to go to an outside Pain Specialist. He popped me, gave me shots in both hips and the back. It helped very little. The next visit He changed my pain Medication. I took the prescription to the V/A to be filled keeping everything above board. The V/A refused the prescription and canceled all appointments with the Doctor. I did not fill my regular pain meds at the V/A, but filled the prescription the Pain Specialist prescribed. I did not have to use all that I was prescribed and my pain was under controll, but I could not afford filling the prescription every month or the Pain Specialist appointments. The V/A started puting me on all the NSAIDS available even though I have bled out once, was in the Intensive Care Unit for four days and almost died and bled internally from an ulcer where the stomach empties into the bowels. It was 1 1/2 inches long and stopped my stomach from emptying. I was completely 100% stopped up food and liquids. I was placed on a Liquids Only diet for three months and then told to stay on it for 6 more months. I could not do it. They kept piling on the NSAIDS and I developed Seratonin Syndrome. I lost my mind. I was naked, but could not get dressed until I found a red ball. I don’t know why. My Daughter-In-Law came over to check on me because I didn’t know how to answer the phone. I had completely disassembled the Cookstove and Microwave and I mean every screw was in the middle of the floor. My Daughter-In-Law called my son back from going to Little Rock for his job. I knew who he was and who my Daughter-In-Law was, but did not know their names, I didn’t know what year it was, I did MIT know who the President was, or where I was. I could not keep still, I had to continually walk, I could not keep still. My legs hurt so badly, they tried to put a needle on my arm and could not hit a vein as I was dehydrated, the pain was intensified several times over. I was screaming like a little girl as the pain was over the top. It hurt more with them trying to establish an IV than when I snapped my femur in half. My legs hurt so bad. The V/A thought I was on drugs and kept sticking with their diagnosis, but they could not find anything, but only what… Read more »

Lori C Cosgrove

Dr Andrew Kolodny: My physician has now decreased my twenty years on methadone from 240mg to 60 mg oxycodone……the state morphine equivalent. I’m taking 15 aspirin a day (in addition to the baclofen and neurontin I’ve taken long term; keep returning to these when others are tried and fail to do as well, but effectiveness is decreased without adequate opiate therapy) for some semblance of pain relief. Recent scoping shows bleeding in stomach lining and narrowing of outlet to my small intestine from ulcer scarring from nsaids. Needs procedure to stretch according to Dr Olsen, gastroenterologist, but can’t do as long as taking aspirin. She has told me I need to be on a soft to liquid diet due to stricture. I can’t walk without the aspirin every 3 to 4 hrs. Six spine surgeries, a hip replacement, and now Dr Wahlig at Maine Spine Surgery in Portland agreed I need surgery for bilateral severe stenosis, cage retropulsed into canal, two screws breeched position, revision of fusion and extension to above level, but stated risks outweigh benefits. Records sent to former surgery center at New England Baptist in Boston. They concur with Dr Wahlig’s decision. Records sent to pain clinic at Mercy Hospital in Portland. Nurse phoned me and stated they have nothing to offer as I’m not a candidate for injections or PT. Corticosteroid injections… medication is misdirected to wrong area due to severe scar tissue. I’ve traveled this state for help, and am told repeatedly I can only be managed pharmaceutically; should be an exception to the opiate limits, BUT they don’t prescribe narcotics. My Dr. is only interested in getting patients to state 100mg morphine equivalent, and has suggested I can learn to meditate the pain away. Even if that were true, it would take time to become proficient in that skill, and the group forming that he wants me to join is a 100 mile round trip for me. I live on very limited social security disability/widow benefits. Besides the gas I cannot afford, driving is painful at present. It’s criminal, and I’ve written to state medical association, governor …so many and nothing. I am so depressed on top of pain and constant withdrawal that I have no social life and my life is going down the tubes. Recently, I phoned a methadone clinic because if you are an addict in the state of Maine, you have no limit to methadone dose, but I’d have to travel ninety miles every day for dosing …even though I had twenty years monthly prescriptions, and never out of compliance. I am feeling like what’s the point anymore. I have two adult children at home with medical issues preventing them from driving. I’ve always worked tween surgeries…cared for husband bedridden for ten years up to his death at home. I am a caregiver and will not become dependent on others caring for me. I have never understood people who, in my opinion, take the cowardly way out by ending their… Read more »

I’m blessed, I have a WONDERFUL pain management Dr. No complaints here. But, I’ve heard horror stories. 😭

Kristine Lund

Maps Pain Clinic in Edina Minnesota gave me 15 methadone to taper of morphine that wasn’t working for me after a 5 level fusion and they said I had Hyperalgesia which is what people in the pain world love to claim so they don’t have to prescribe. I had a failed fusion, a collapsed spine from Osteoporosis, and rods coming out my spine. I was suicidal when I talked to him and told him the morphine wasn’t helping so I took a few pills more to get rid of the pain. He abandoned me because I took 4 extra pills said the drugs where making me worse and walked out. I went home and tried to end my life. After an inpatient stay in the psych ward and shock therapy I got back the will to start eating again. I was still in horrific pain where I just laid in bed shaking and praying to die for days at a time. I finally got in a pain clinic who worked with my drugs and founded out that morphine did not work well for me and tried different combinations of medications and got me out of pain. They saved my life. I am now going to get a pain pump and hopefully will be protected from inhumane people who look at only the negative of opiods not the positive. Opiods are not magic but they have made my life manageable in that I can do self care, make a meal, and walking my dog. My quality of life is still poor and in my opinion we need better drugs to treat human suffering but until that day opiods are still the gold standard for Intractable Pain. I would like to see the medical field to become more compassionate, educated, and help people with real suffering. Instead of counting my pills and making me pee in a cup and giving me only a 30 day supply which I have no pills the 31st day and am without medication until I can get to the pharmacy is unfair and punishing. The DEA needs to focus on the illegal Heroine and Fentynal. Addicts will always find there drug of choice. Alchohol is very addicting but you can get a drink anywhere. Marijuana helps some but not as well as touted for many and to expensive for pain patients that are often disabled and poor. As a disabled teacher/therapist I did not see myself so ill yet here I am. I am destitute go without many expensive medications and try to afford healthy food, pt, and counseling to help me be the best I can be. Drug addiction is the least of my worries. I take meds as prescribed and use the medication as one of many tools. The war on opiods seems to be a war on people with Intractable Pain. My doctor needs to be left to my care without fear of prescribing and pressure to wean their Intractable pain patients off their… Read more »

Clay

Leave my 20 year dose ALONE I have multiple disc and vertebrae reconstruction. And a severe spinal cord injury . My meds work and I can function and take on my family and my business . It’s the only way. And I can’t have any interinterruptions. In my treatment. Maybe try thinking of us who need them and no abuse whatsoever. We are career pain patients . And my doctors agree with me about this.

It is almost impossible to give this info in a tweet. I had to use two just make it clear.