Hey Chronic Pain Patients – Need Your Feedback.

Hey Chronic Pain Patients – Need Your Feedback.

By Ed Coghlan.

There’s a national news publication working on a chronic pain story. What they want to know is whether pain patients, in the midst of the anti-opioid epoch in which we live, are patients being encouraged to consider alternatives by the providers that they visit.

We really need your input.

Remember, what we are trying to gauge is what is happening to the patients when they visit their pain doctors.

Please take a look at the four categories listed below and tell us what your experience is. We asked our good friend Dr. Terri Lewis to share some basic treatment categories…and she provided us the categories below.

Please leave us in our comment section, what your experience has been.

We are asking for honesty here…because we might refer you to the reporter interested in this issue. So, when you look at the questions, think about your own experience and let us know.

Here is what Dr. Lewis shared with us.

The noise in the news would have the public believe that effective therapies are available to patients as alternatives to opioids. Your own experience might reinforce this—or not.

Please take a moment to help us explore this conversation by addressing this question:

What is your physician offering you as choices for pain management and in what order?

1. (NSaids, gabapentin, and or anti-depressants), (Epidural injections, pumps, or spinal cord stimulators), (Opioids), (Yoga, CBT, etc.)

2. (Yoga, CBT, etc.), (NSaids, gabapentin, and or anti-depressants), (Epidural injections, pumps, or spinal cord stimulators), (Opioids)

3. (Opioids), (Yoga, CBT, etc.), (NSaids, gabapentin, and or anti-depressants), (Epidural injections, pumps, or spinal cord stimulators)

4. (Epidural injections, pumps, or spinal cord stimulators), (Opioids), (Yoga, CBT, etc.), (NSaids, gabapentin, and or anti-depressants)

Please provide your answers (and additional commentary) in our comments section.

We may be in touch.


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Authored by: Ed Coghlan

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285 Comments on "Hey Chronic Pain Patients – Need Your Feedback."

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I find the format strange. I take opioids because the other options don’t work for me and I have tried most of them:
1. NSaids; can’t take because take blood thinners.
2. Gabapentin; tried and turned me into a lifeless zombie who fell asleep during conversations.
3. anti-depressants; would be medical malpractice to prescribe for me; must manage weight or will die from intestinal blockages caused by massive ventral hernias and intestinal blockages (see photo). Plus, I am not depressed, just very, very angry at the nanny state.
4. Physical Therapy is helpful when healthy enough, but condition requires major abdominal operations every year or so.
5. Yoga—not mobile enough! In my dreams!
6. CBT so silly are you an EST graduate, I remember Werner Erhard, do you?
7. Epidural injections-tried with great hope—failed
8. Cortisone injections-had so many my tendons are failing
9. TENS—feels great if I could just lie down all day and have someone apply the patches; same with massage
10. Spinal Cord stimulators-was told not a candidate and plus have several other pain sources; I am a complex chronic pain patient. My story is below if you have room (usually too many words)
Opioids help me get through day; still in tremendous pain but can at least do some meal preparation. What is the big deal? They certainly don’t give me a high at the dose I take.


To finish I have done everything that has been told I need to do, the only one thing I can not do is physical therapy b/c I can not b touched, I can’t even b touched by ppl who I knew before this happened, let alone by ppl I do not know, I can not take off my clothes either, and my pain is not in a place that physical therapy can reach and I keep trying to reiterate that and now it’s all out Just ignored when I do b/c it’s one thing that I have not agreed to have done to me so now that has turned into the escape goat so to speak, the blame hasn’t now been put on that but the fact that I have even agreed to and had no exaggeration!!! 3 inch needles thick needles by the way stuck into my skull and down the back of my skull to my neck and also in the front of my head all over my forehead above my eyes to numb my skull completely and still felt the pain b/c it’s inside my brain!!! It never goes away it is there every minute of the day never going away!!! I’ve even taken every medication including all kinds of migraine medication one being $450 for 4 pills even when I told doctors and specialists it was not a migraine it never went away, and is also clear it is not migraines b/c of all the other issues and things that r also wrong or abilities I’ve lost b/c of the head traumas on top of the never ending unbearable agonizing worst pain imaginable, it’s not like a broken bone or even a injury to your leg arm back even, I’ve injured different parts of my body before this nightmare b/c of how active my life was before and accidents as well as during the 3 yrs receiving many injuries sometimes multiple at one time and even if I added them all up and combined them all at once and through in labor active horrible labor with no drugs or epidural to help endure it would still not even come close to this pain, and what it has done to me and my life, if Brain controls and is in charge of everything u do and having that b in such unbearable pain that never goes away I wouldn’t wish on my worst enemy especially when u have doctors who don’t care who won’t listen to u and who have actually treated u like u have done something wrong or have committed a crime or have to b a scumbag to have had this happen to me instead of me being treated with compassion and caring and empathy and wanting to help me instead I have been bullied and abused even further, and I have no idea what to do, I’ve been a guniea pig and suffered unbearable through it I’m even 100lbs heavier from it all.

I after almost my entire life being healthy other then suffering from genetic anxiety and even with that waiting till I could no longer control it with every possible thing I could think of besides medication only finally went to primary care doctor for help and controlling my anxiety and reluctantly starting medication for it b/c it was effecting my life, that’s the kind of person I am and was before this nightmare happened and the key word here is happened to me, it was not something I did to myself caused myself or had any control over at all and what happened to me to cause this has been horrific and most ppls worst nightmares alone, never did I think that I would b not just denied the medical help and care I need but also put through even more of a nightmare, my life made even worse and treated like I am a scumbag and criminal on top of it all!!! But I have and here I am, not just suffering in agony everyday, but just when I thought my quality of life could not get any worse then it was I was wrong and have been left feeling like I made the wrong choice 2 yrs ago and should of stayed in the nightmare I was in that caused all this b/c that would of ended and I would of been killed within months had I stayed and sad but true would of finally been at peace and ended my suffering, but naive me who had never done drugs, stolen anything done anything bad in my entire life been arrested nothing, b/c of my childhood, I as soon as I was old enough worked my butt off at work and life to b the best person I could possibly b, and b as sucessful as I could b, which even sadder was what made me the chosen target for what was done to me, I have atleast 8 severe head traumas the 1st I wasn’t unconscious for over 5 hrs, over a course of 9 months, there r probably more but that is all I can actually remember and can say for sure what month it happened and what my head was injured on or with, after the 1st injury the ones that followed were multiple times being hit in that 1 time, as well as being abused for a course of 3 yrs in every way possible, that a man can abuse a woman, and I would of been better off letting him kill me then getting away from him, b/c I actually have less of a quality of life now then I did 2 yrs ago before I left, which I didn’t think possible b/c of this whole pain med and gov. and doctor nightmare that has evolved into another full blown nightmare for me!! And for anyone out there reading this I want to say this not all DV is the same!!

Gabrielle M Christensen

I was offered all the above. My doctor wants to stay away from surgery so he’s trying the medication route. I was given a combination of gabapentin (increased dose) antidepressants and Percocets. if this does not work the next step would be an epidural, if the epidural does not work the next step would be a spinal stimulator. I was referred to the pain doctor from my surgeon who did a total reconstruction of my ulnar nerve due to an accident. I have severe pain and severe handicap due to the accident and the Reconstruction of my nerve. I don’t know if I’ll ever get use of my hand to where I used to have it. I have a lot of pain burning stinging aching to the point of not being able to work or write. I don’t want to go to the surgical route because I don’t like the idea of anyone sticking an object in my spine which may not even work. The combination that my doctor has given me recently seems to be working but I’m sure it’s only for temporary time. I’m currently on 600 mg of Gabapentin 4 times a day 10 mg of Percocet 3 times a day and a 25mg tablet of Elavil once a day. I have experienced a lot of difficulties getting my medication (percocet) from certain pharmacies and made to feel like an addict or to feel as if I don’t have the proper prescription. I have severe pain I’ve went almost a year without any medication and my surgeon telling me he couldn’t give me any medication I still have pain even with the medications but it’s not as bad as it was when I didn’t have them. I want to add that I have tried Tylenol over the counter pain relief I was on a lower dose of gabapentin and it was increased several times due to its ineffectiveness and dealing with my pain. I have been on gabapentin for months my doctor tried to get me on Lyrica but my insurance did not want to pay for Lyrica due to the fact that my condition did not meet the requirements. I believe that if I was given the lyrical he wouldn’t have had to put me on the Percocet.

I was offered none of the above. I was refereed to get procedures that my insurance would not cover and I do not see them here. But they did give me muscle relaxer prescriptions and I am getting ready to end the contract, and switch these prescriptions to a doctor in another country who will care for my chronic pain with things I can actually have. Also I do not see “Nothing”, which is what is happening to 100,000’s. So is my pain management doctor really offering me alternatives? No. I cannot get them as they are an expensive extra cost. “Here is a referral for a cortisone shot for your sciatica pain that we are fighting your insurance to cover but they keep denying it and you have no more appeals”. So nothing is my answer. They did not offer me anything, anything that I could have. And like many others, I plan to leave the U.S. and find more affordable care for my chronic pain. Because the “offering” was something I could not get.

The most ecletic “Pain Clinic” I went to was a team of a highly acclaimed Pain Doc from the UK partnered with a Health Psychologist. Tjey would only prescribe Gabapentin (which I had already been ‘required’ to try twice, and failed twice with wicked lasting side effects). The Health Psychologist had 4 tricks: Complete a childhood trauma evaluation and depending on the score, work with a “professional” (think high cost, not covered by ins) to reverse the cumulative effects of childhood trauma never allowed to express itself fully .. i.e. the fight/flight/freeze response was not allowed to complete, thus the patient had pent up strong emotions/energy and was much more likely to expwrience severe pain related illnesses later in life… so through a re-experiencing of the trauma via a “laying on of hands” process and discussion of the events .. all with absolutely no pain meds to address the severe pain likely to be stirred up, the patient would be gradually cured .. examples of war vets with ptsd were often used as success story examples; 2) traditional talk therapy, 3) meditation and visualization to remove the pain through guided imagery therapy sessions, again, too ecletic to be coverwd by insurance, and finally 4) accupuncture .. which put my RSD into an intractible flare, stuck at 8-10/10 on McGill scale 24×7 for over 19mos now…19mos of horribly undertreated severe disabling freaking pain… and when I was finally allowed to return to my original pain clinic, they said there is NoWAY they would ever have authorized or prescribed accupuncture for RSD. (Note..this whole mess started because ins was gonna drop my original doc .. sent me letters saying i had yo choose another pain clinic or no coverage… then after the 2nd clinic messed me up horribly, i got a letter saying ins wprked things out with the 1st clinic so i could go back… uggggh!)

Fools are ruining the lives of chronic pain patients .. with 0 consequence to them… We pay all the consequences and all we ever wanted was relief from this horrific pain. 🙁

It depends on which pain clinic/doctor you see. Though they all call themselves ‘Pain Specialists’, each leads with their treatment of choice 1.(holistic care .. meditation, accupuncture, herbs … no pain med prescrip .. only gabapentin); 2.(nerve blocks, spinal cord stimulators, meds like gabapentin, many other anti-depressants tho not depressed and only after all else fails opiates/opioids); 3) comprehensive care .. big menu of choices, all trial and error, dispensing up to 90 mme per day with several other meds mixed in for off label use to try to assist with sleep .. only after many, many options tried/failed… will NOT exceed CDC daily limit for primary care physicians tho they areCertified Paim Specialists .. stated afraid to lose their licenses even tjough they know their patient is still at 8-10/10 on McGill pain scale with 90mme/day on board. Treatment offered varies greatly with which “Pain Specialist” you see.

Once you actually get a script, the nonsense with the pharmacy begins .. late fills, wrong meds dispensed, discriminatory condescending attitudes… dehumanizing. It all adds to the stress which makes the RSD pain worse, and exacerbates the untreated/undertreated pain level.

Primary care suggested trying medical mj for sleep .. but “Pain Clinic” Docs require a choice .. if you drop dirty they will preacribe nothing for you .. so you are forced to choose prescriptions or mmj .. when neither does the whole job, but the 2 together could make a chronic pain patient much more comfortable .. scripts for daytime and mmj for sleep. The struggle is real. The discrimination is pervasive.

Avoid the ERs at all cost. Only went once at my hisband’s insistance. He was sure they would help me because i was sobbing, curled in a ball in pain. They treated me like a drug seeker .. left me curled in the bed 6hrs with no treatment and ultimately wrote me a scrip for meds i was allergic to .. because they never spoke to me like a human being..they just heard my diagnosis and started rwciting passages of their drug addict training manual .. sooo demeaning.
Horrific experience … I kept the script to remind myself to never ever ever go to an ER again…

My 78 yr old mother has severe degenerative bone disease, disintegrating discs, stage 4 kidney disease, scoliosis, arthritis, dementia, 3 time cancer survivor. Luckily we have an amazing Dr who is willing to do the right thing and give her quality of life. FDA needs to understand. Pain meds don’t take away 100% of someone’s chronic pain but restores their ability to live a much more normal of a life. She has had injections(causing her more pain), physical therapy countless times, non opiate OTC, She has been on pain meds for 10 years and is currently on Fentynll patch and morphine combo. It works and I’ll be damned if someone is ever going to tell me that I’m going to watch my mother suffer anymore than she already does. Chronic pain patients need a loud voice because what I am reading in these comments is disgraceful and must be illegal in some form or fashion. Negligence of the highest magnitude by our own government. You need a champion? I’m ready. This is a fight worth fighting for whether for my Mother or anyone else being denied the right to live as pain free a life as possible. We’ve had pharmacy issues as well. The looks, you know it. The condescending tones. This treatment of legitimate pain patients can’t be tolerated. May I suggest a class action lawsuit the size of Montana?

Down below you will see the paragraphs written by REESE. I to, have interstitial cystitis. Everything she stated fits me to a tee, only I am a male living with this morbid disease. The only difference is I am much older. Many people with this disease commit suicide because urologists, are surgeons only, and do not care, or understand this disease. I really don’t want to die, but I have no place to land. May God bless you REESE, and your family. I doubt seriously, that the 2016 CDC Guild-lines will be re-written. To many doctors 2 years ago, supported all of the CDC’s recommendations, of the voluntary laws, which became law of the land. Write prescriptions for controlled substances and you will have your medical licenses suspended.

Just saw my pain management doctor that I have been a completely compliant patient of since 2008. Before the epidemic began to impact patients in need of opioids I was on Fentanyl 100 patch, Roxicodone for break through pain, Gabapentin for nerve pain, Baclofen for muscle pain. I did a spine stimulation test, a opioid pump test with no real relief. Have had uncountable steroid injections and nerve block treatment.

On Monday I was informed that the opioid pain relief is going away. My doctor is not going to be issuing any perscriptions for opioid medication within the next couple of monthly meetings.

They issued a perscription for the lowest Fentanyl patch, 12mg and 3x4mg Hydromorphone. When I go back, June 5th, I will no longer have the Fentanyl patch script and the Hydromorphone is to be changed to 2mg.

The clinic informed me that if I do not sign up for the pain pump and or the spine stimulator I will be dropped as a patient because they are not able to help me manage my pain.

The alternative suggestions a big fat 0‼️

My 9th grade daughter embarked on a Capstone Project that she called ‘Doctors Dilemma’. As part of her project she asked my doctor 24 questions about the opioid epidemic in the US. In his professional opinion he said that the epidemic has very little to do with doctors writing opioid scripts. Yes a small percentage of doctors were unethical, became greedy and made money as they profited by becoming pill mills, which became the focus of the Federal government as being the reason that opioids were killing more people that car accidents. However long it takes the government is going to realize that subjecting ligitimate pain patients to cruel and unusual punishment will never stem the flow of drugs coming across the boarders. Using car accident fatalities as a measurement does not make sense since car have more airbags, are warning drivers if they are not paying attention, even now applying the brakes before the driver can react.

Regardless the doctors hands are tied. It is clear that if they resist they are forced to give up their practice.

So patients are going to continue to take their own lives, turn to alcohol or illegal drugs, increase their levels of anxiety and antidepressants, move to states with more compassion.

Who knows what other options are open to patients, many of whom are facing financial and emotional problems even before the federal government graduated from med school.

I have polycystic kidney disease and the pain is uncontrolled and severe. Doctors have offered me every alternative to opiates and I’ve tried them all. None of them help. But even so, no one will give me the opiates I need to have any trace of quality of life. It has been over 3 years since I have been prescribed any opiate pain medication, despite visiting countless doctors and hospitals. If I can’t find an opiate prescription soon I’m either going to have to start using heroin or just kill myself. Millions of people are in the same position of me and more of us kill ourselves or overdose on H each day. BECAUSE OF POLITICS AND PROHIBITION HYSTERIA.

[edit] STOP, lawmakers! Undo these mistakes! I literally can’t take it much longer.

(sorry if this double posted, not sure if I did but I had to add some details)

My mom has suffered from chronic pain for most of my life. Recently amidst the “so-called” opioid epidemic, her doctors have decreased her meds in an inhumane manner, with no alternative treatment options (aware of the severity of her pain and unwilling to help). I have to see her suffer on a daily basis and all these doctors are Only concerned with covering their asses and cutting the meds from people who need them. Maybe the dea should take a step back and go after the people abusing the system, and leave the doctors alone, allowing them to prescribe to patients like my mother “people who really need these medications”. The dea should go after the real devils (people who doctor shop in order to put these drugs on the street) behind this moronic [edit] show based off of biased, irrelevant and/or skewed statistics that the dea presents to back their case, allowing them to continue profiting off of the war on drugs. Go after the heroine, meth and crack dealers who are profiting off of this epidemic, lacing these street drugs with anything cheap “toxic ingredients more often than not” to make a quick buck off of people who have been forced to go to the street and find cheap comparable alternatives such as heroine.
So here’s some advice to the heartless [edit] making people with real pain suffer. Back [edit] off of the doctors and go after the heroine dealers. If you suspect a patient is abusing the system, deal with it on a case by case basis. But please!!! Leave the doctors alone! Let them prescribe and remove the shotgun of delicensing from their face. Go after those selling heroine and for once make an actual difference. Take your stats, remove them from your department’s murderous toolbox and use them for scratch paper. For a wise man once said, “there are liars, damned liars, and then there are statisticians.”
And then there’s those behind the assault of the innocent, people like my mother, who righteously deserve to receive medicinal treatment for chronic pain

They all so want me to take gabapentin !!!! That cause my sister to have a stroke and I do have nerve pain in my left leg

I went to a Dr at IU MEDICAL CENTER HAD A MRI BUT I DON’T KNOW ANYTHING YET I GO BACK MAY 8 TH 2018 ! BUT ONE OF THE FRIST THINGS THEY SAID TO ME is we give injection for this !!! I said no that is what has got me here !!! Than next they said I don’t look sick ! I said will I am and just because I have my make up on and hair fix does not mean I am not sick ! They don’t see how I feel when my back hurts so bad I am in a reclianer because I can not lay in a bed flat ! And because my pain Dr no fault of mine he took my pain meds away from me ! I passed all my drug test ! They set me up for what that done to me. ! Not what I done to them But they don’t see me when my legs go numb, my hand and wrist feels like shocks going up them, ,they don’t see me when I can not urinate all day most of the time ,Or my bowels are so bad I have to take something for I can go any where I have to hurry back home !,They don’t see me
When my headacks are so bad that I some times I cry ,( and I am not one that Cry’s)
And my gorin is go painful sometimes I can not walk with out lemping, They don’t see me with a stiff neck that sometimes I have turn my body not my neck ,they don’t see me with my knee swelled up ,I got a lot more. But I will stop for now ! Two more they don’t see the rashes I have !! So don’t tell me I am not sick !!!!!!

PCP of several yrs moved. Despite efforts in referrals to have a new pain doc continue me on my same dosage (not increased in over 2 yrs) of opioids, as PCP had already tried me on, and I had failed to benefit, or had intolerablecside effects from – all potential non- narcotic pain meds.
1st new Pain Mgmt Dr literally laughed in my face all the way out of the exam room – having refused to look at my 11 years of radiology reports/diagnosis list/cd’s of images -all brought to appt.
The next new Pain Mgmt Dr, the only one I could find open to new clients, also never took the time to look at any radiology hx., despite reports and discs brought to appt. as well.
( Radiology CD imaging & reports showing degenerative disc disease, Deg joint disease, scoliosis, osteoarthritis, osteoarthrosis, sondylosthesis, spondylosis, herniated/bulging discs in neck, thoracic and lumbar areas, osteophites, tricompartmental chondrosis, weight bearing surface of left tibia without any cartilage, etc. Additionally, Feb 26 of 2018 was my 35th surgical procedure.
Instead, I was lectured about MME being too high per gov’t studies & recommendations. Patronizingly treating me like a drug addict, he would only take me on as a patient in order to safely taper me off all narcotics. Once off, his only offer was suboxone.
I wish to remain anonymous at this time, but will supply truthful contact info as requested below.

My current pain Doctor offerred no alternatives until I brought up the topic. He always said there is nothing else we can do. With prompting he wrote a prescription for acupuncture and massage. The only problem is finding a provder for the alternatives that take insurance. I do take a very low dose of morphine and an antidepressant. I have had many injections in the past, but they do not seem to help me. I also got a spinal cord stimulator that became infected. A staph infection started at the tip of the stimulator electrode. I had sepsis and nearly died yet the doctors still try to get me to try a stimulator saying they are improved. No one has ever said “the doctors improved”
My experience in trying some alternatives for pain is that the doctors have shut me down either saying insurance won’t pay or that won’t do you any good. I am currently trying to get some leg pain relief and I’m going to get coolief knee radiofrequency.
Im willing to try just about anything for back and leg pain relief. Pain can be so exhausting, one gets sleep deprived, lose the ability to care for ones self or do regular house work. Chronic pain can and is debilitating.

I was encouraged to go yo a pain Dr. whose only treatment was epidural injections, no choice there since the injections are not approved by the FDA. I went to a second pain management Dr. who offered a spinal stimulator placed on a trial basis because they do not work for many people, no choice there. I am not a guinea pig! I have been to therapy but discharge because I was “not progressing'” although to me my pain was much better.
My family Dr offered anticonvulscent meds used off label for pain that have terrible side effects.
Give me aquatic therapy.

I went to my (latest) GP a month ago in agonizing pain (I was off all pain meds so I could be part of a drug trial for small fiber neuropathy, but then couldn’t take it anymore) and when I asked her for help in making a plan to manage my pain she first said “we” needed to take care of my depression (which she diagnosed from me sitting there in excruciating pain). When I told her that I wasn’t depressed that I was in pain she said, “We can’t help people like you.” Hearing that sent me over the cliff because this is what thought all the docs I’ve been through were actually thinking, this one just had the guts to say it to my face. Needless to say, I became despondent and my husband was so worried he called my therapist and we all decided I should go to the ER. The intake guy convinced me to voluntarily check myself in to the psych ward and then they’d give me something for my pain. Every single person I saw told me the next person I saw would give me something for my pain and it NEVER happened. They just kept kicking the can down the road hoping I’d stop asking I guess. So I spent 48 hours in a psych ward in horrible pain and the only thing they’d give me was 100mgs of Neurontin three times a day and 5mgs of Ambien. LOL, I can laugh about it now, but it was crazy.

If you want any more details just email me at the email provided. – Jen

Please pain people CBD does not work for central pain conditions (plenty of peer reviewed research) that would be most of us, so save your energy. If you,want relief from cannabis you will have to score it on the street which I can’t possibly advise, and smoke or vape it. The THC is what works, not the CBD which is medical cannabis (grown and manufactured in the UK where it is illegal, ironically even though the Prime Minister’s husband is on the board of then Capital Group which produces it). THC kills central pain however you will be stoned, might get the munchies and put on weight, might get itchy skin and will suffer a vile withdrawal syndrome if you quit. Try it yourself if you must you,can order it legally from Europe. It is very expensive.

Opioids first I live in the UK. I actually need procedures for my leg pain caused by spinal injury which is torture every night and stops me sleeping. Opioids don’t touch it. I am being offered nothing, not good enough and having to fight for it given I’m a patient at a NEUROMODULATION CLINIC. Opioids don’t touch the neuropathic pain but they control the muscle and upper body tissue pain well. I have always been on a combo so benzo, antidepressant (both stop dreaming so need to be stopped to allow emotional processing by dreaming), I have been taught the other strategies exercise (too exhausted from lack of sleep I just manage Margaret Morris Dance once a week which is brilliant for rehab and joyful to do), OT, hate CBT , have neuro psychotherapy to tackle vile pain prejudice, with bodywork and massage weekly to relive anxiety caused by multiple muscle spasticity, which I have to pay for. I think we all have to find our own way with what works for us and good doctors support that in my experience, the three week residential pain management courses at some UK hospitals are well worth doing you do learn useful management techniques but they do not replace opioids. The best treatment is gravity free floating in geothermal water in Iceland, it reduces pain for three months,

I have been offered and recieved injections,physical therapy and neurotin and opiods.Taking neurotin i would wake up in strange places,no idea how i got there.Physical therapy taught me techniques i still use.The injections also helped.I took a combination of these and opiods to have any quality of life.As of March medicaid has decided not to pay for injections!To get the measure of relief that i got using medicine exercise ,and injections i now need to up my medicine.Why are they saying there are alternatives and now refuse payment.?I guess the nonmedical personnel making these decisions will have need of treatment for pain and get the same treatment as me.offered help and denied payment,I truly wish that for everyone involved in denying me helpful treatment

having had a severe chronic pain problem for 40+yrs i feel qualified to speak for 35yrs i used pain meds on a daily basis they allowed me to live life for 20 of those yrs, same doctor, same dosage, same effect, during those 20yrs never was an alternative discussed, there was no point, i like most pain patients had tried anything and everything available to no avail the only thing that ever controlled my pain in a consistent way were the pain meds, there are many people who like to claim that there r millions of options to relieve pain, first of all, most of these options r very expensive beyond the ability of most disabled people to afford them, as all of them r not covered by insurance, second most of these so-called options r no such thing, u can not walk, think or convince urself that ur pain is not real and does not hurt, but that is what they want u to do, these kinds of ideas come mostly from people who have never experienced severe chronic pain in there life and have no concept of what chronic pain does to a person or how it affects every level of ones being, the one thing i am sure of is that my federal government has create an agenda of terror and insanity, where pain meds r concerned nothing they claim is true or provable and it is doing nothing to help the addiction problem in this country, in fact there agenda is causing more people to die, addicts and pain patients alike, they r doing very little to tackle the real problems, which is the flow of illegal drugs from china and mexico onto the streets of our country as they terrorize doctors and interfere in the doctor patients agenda, which happens to be illegal and is solving nothing,a total waste of billions and billions of dollars not to mention all the dead on their watch, in my opinion 99% of everything most people think they know about pain meds is a blatant lie as Socrates once said “the only evil is ignorance and the only good is knowledge” right now our nation is covered in ignorance and death thank ur federal gov’t.

I’ve had Fibromyalgia and idiopathic lymphedema tarda for 30 years. I’ve had migraines since I was a child. I also have major depression, since my teenage.
Thirty years ago I was able to afford acupuncture and massage for a time and used occasional Percocet. In 2004, after much soul searching and because my internist was not comfortable prescribing anymore, I went to a pain clinic where I was started on Cymbalta and Oxycontin. Cymbalta, Lyrica and Savella were all tried but either side effects or ineffectiveness made them not worth it. It’s worth mentioning that I was a hospice RN and fully aware of risk/benefit issues with these meds as I worked with them daily in my practice.
I was stable with only minor adjustments for about 5 years when the Oxycontin began to fail. Rather than increase the dose, my NP switched me to Fentanyl which made sense to me. In 2012, my 28 year old son was diagnosed with colon cancer and died within 84 days. I managed for another year but became progressively depressed. I was ultimately hospitalized after an unsuccessful suicide attempt. Within days of my discharge I was informed that the pain clinic would no longer see me because of the attempt. I was given no taper and only one patch. I detoxed at home, alone. As a result of this and the exacerbation of my depression it has caused, I have had to give up my nursing career after 40 years and am disabled. I see a psychiatrist with pain management experience and a therapist. I had been taking Naproxen 440mg about every other day but it only helps for little headaches. I just started Lyrica for the third time, (Sigh). I predict that, combined with my psych meds, it will worsen my fatigue and make my edema worse.
I have given up on asking for an opiate. My depression freaks them out; my pain worsens my depression. I just can’t do that dance anymore.

Please contact me. I am in constant chronic pain and I do have a sympathetic doctor who is helping me with my opioids + does encourage alternatives. Anti-inflammatories are out because I take blood thinners for a chronic blood condition and have for the past 20 years. I have a 50 degree scoliosis curve and severe sciatic pain. In addition to right hip bursitis, I can barely stand for more than 2 or 3 minutes to cook my meals so preparing meals is an all day event where I prepare little bits at a time. I can barely take care of myself and my husband does most of the housework. I’m in my late 60s. Additionally I have a condition in my abdomen that again 20 years ago that created massive ventral hernias and I’ve had 3 major operations in the past 3 years resulting in 10-inch incisions (cutting my abdominal muscle nerves)a very difficult recovery & hard to keep up phys therapy. Suffice it to say I do need the pain medicine. Until the last 3 or 4 years it was not a problem and my regular physician could prescribe enough of it. Not anymore. Now my husband must take off 3 or 4 hours once a month to take me to a pain specialist who is out of town because I cannot drive; it’s like I’m being treated like a criminal. I’m really fed up with this opioid epidemic nonsense. Most of us as you can see from these comments are seriously ill people and we deserve to be treated like human beings and not like criminals. I’m crying as I write this. Please alert the powers-that-be to the terrible, terrible things that they are doing to us normal citizens who simply need pain medication and have tried everything. I have tried steroid injections, I’ve tried physical therapy, I have tried everything I safely can, and I can’t try certain other things. I tried Gabapentin. It turned me into a zombie. I would just sit there for hours doing nothing; it did help the pain somewhat but then I have no life on Gabapentin so there are certain things you just can’t do. Opiods do help the pain, that’s just plain and simple. I follow the rules and I don’t think in that case that I run a risk of “accidental overdose.” you’re talking about people who are taking them incorrectly or taking them on purpose to get high. That is not the purpose of these people that are writing in this column and commenting. They are trying to just lead a normal life; actually not even normal—just barely getting by.

No one on my team of physicians of other forms/methods of pain control. I’m a patient of the University of Oklahoma internal medicin group.I’ve been begging for about a year to add a palliative group of physicians to my team. They say either I don’t qualify or that there aren’t outpatient Palliative care in Tulsa, Oklahoma. I’ve ask to be sent to one in the next closest city to no avail. I’ve even given the letters from the APF stating that many Porphyria patients have palliative care and explaining the amount of pain involved. I’ve had a physicians information packet sent to them in addition to invitations from the APF to training seminars that would give them CME credits. Several of my physicians have stated that OU no longer presscribes opioids nor anti-psychotic medication foor fear of the legal ramifications.

Teresa Chalk…..#outragedandsuffering

I have been on opioids for chronic pain management (daily migraine, chronic arthritis, degenerative disc) for over 30 years, and now, at the age of 57, have been on Fentanyl 50 mcg patches for over 10 years. I can’t take anti-inflammatories since a bleeding ulcer brought on by massive aspirin usage from my teens into my mid-20’s. Last month, the dosing of patches was abruptly reduced by 1/3 per month. I had been replacing the patch every 48 hours instead of 72 due to the tolerance I’d built up after 6 years use. After less than 48 hours on a patch, I begin going going through the symptoms of withdrawal and am now told I have to stick it out until I reach 72 hours. I’m losing time at work, where I’ve been a highly functional print executive, and am enduring over 24 hours of grueling pain, nausea & cramping before I can finally replace the patch. NO alternatives have been offered by my pain management team. I’m being told their “hands are tied” by the new CDC guidelines. I even made two separate trips to the ER for help during a stretch of 1 week without being able to replace my patch when I had to wait for a new “prior authorization” on even getting my last refill and was told the same thing by the ER doctors, “our hands are tied.” I survived (barely) by using old used patches I’d saved. My pain doctor eventually prescribed me Clonadine, but it did nothing to ease the symptoms and I missed 4 days of work. After seeing Dr. Sanjay Gupta’s recent report on research into CBD (derived from marijuana) being a potential solution to easing the opioid crisis, I regained a glimmer of hope, and began researching the possibility of getting a medical marijuana card to try it. However, the pain clinic prescribing the Fentanyl patches requires a patient signed contract agreeing NOT to go on medical marijuana. So I’d be risking being cutoff completely from the patches if I tested positive for any trace. In 2007, I attempted suicide after getting no relief from massive quantities of Vicodin and trying to quit. I’m nearing that point of no return once again unless a solution to the situation appears in the very near future. The CDC deciding to cutoff chronic pain sufferers from opioids with NO ALTERNATIVE is criminal. And to refuse to consider a promising alternative such as CBD is pig-headed and unconscionable. I never sought to be on Fentanyl, and now I cannot survive a cold-turkey approach to getting off it without viable alternatives first being offered.

I have cervical spinal stenosis, DDD and bulging/herniated discs in my lower back due to vehicle accident. I have been on fentynl and oxycodone for almost 15yrs. I have seen the same pain management doctor for years with never a problem until recently. I am being FORCED to reduce the medications, no I’ve done nothing wrong but in my opinion am being punished. I have not diverted my prescriptions, have lived up to the pain contract I had to sign, have never failed a urinalysis.
I have empathy for anyone who has lost a family member due to drugs or alcohol even but do ALL pain patients have to pay for the choices of others. These are medications that help with lowering the pain I live with 24/7, that allow a quality of life that allows me to be somewhat productive and take care of my family.
The withdrawals are almost as debilitating as the pain. Think of the worst case of flu and multiply it by 10. What happened? Why has our Government ignored the rights of the millions of pain patients? Would we limit insulin for diabetics or meds for blood pressure patients? Taken incorrectly these medications will kill you too. I think we are dealing with fraudulent statistics by so-called experts for their own enrichment. Some of these same experts pushing for rehab they are affiliated with. Who has $25-50k for rehab for 30 days? Then what? Would rehab cure my spine? Hopefully someone opens their eyes and sees what this is doing to pain patients before it’s too late.

I really don’t care what order the doctor wants to try anything in. All “guidelines” and quotas and other prohibitionist nonsense miss the point:
We should be able to purchase any medication we want, for whatever purpose we want, no questions asked.

The DEA should be disbanded. The CDC/FDA/NIH should be flushed like the swamp it is.

I have been a successful chronic pain patient on opiates for 16yrs now. I have had same dr, mostly been on same meds and same, but now less, dosages. I have tried all forms of non-opioid therapy and my pain from severe fibromyalgia will only respond to daily opiate therapy. I was originally diagnosed with a very severe form of the disease, which is affected by also having ME. Fibro and ME keep each other going, with no more remissions of either and I am always in a fibro flare. I was sent to a legit pain clinic. For the first time, my pain was controlled and I was given the freedom to take one opiate as needed while taking a long acting opiate to keep me always “covered” by pain meds. This worked amazingly well and allowed me, even with my disability, to stay involved and out of bed for as long as my ME allowed me to be. Now, after the opiate reductions, I can only stay up for 5min at a time and when I am in bed, I don’t engage online or on the phone (talking) like I used to. In the last couple years, my dr started reducing my meds, due to the opiate crisis. She did leave me on the higher CDC limit for a while, but last year, she took me down from that even. She was afraid of losing her license, and the DEA/CDC were coming in and reading charts. I thought I had reached a somewhat workable plateau, although I surely wasn’t as active as before and had many days I was rendered incapable due to terrible pain. Then my last visit, Apr 2018, she was in yet another terrible panic and I guess the CMS/Medicare adoption of guidelines caused her to start taking me down to the lowest limit, since I am on Medicare, which my pain just laughs at. I have always kept a pain contract/assessment with her with regular urine analysis. I have no addictive behavior and a model pain patient. I am now considering that suicide may be my best pain treatment, when I am on the lowest dose (or heaven forbid, not able to get opiates), in about 6 months. My life will be worth nothing and no way to live. I am not suicidal, but would YOU want to lie in your bed, screaming, 24/7?

having successfully used pain meds for 35 yrs without ever a problem of any kind ever 1 yr ago my doctor decided i was too old to take medication for pain, when i protested she fired me,with that firing i lost my access to pain meds, she was my friend (i thought) and my doctor for 16yrs, when i went to the first meeting with a new doctor the first words out of her mouth were “i will not be writing any scripts for you for pain meds and neither will any other internist at Kaiser” well hello to u too talk about rude behavior, needless to say i will not go back to her or any doctor at Kaiser, when i appealed this decision to Kaiser, appeal denied no longer medically necessary for me to take pain meds, so i then appealed to the medical board of california,who could not be bothered to use the correct diagnosis, but they concurred no longer medically necessary, as with most pain patient i have tried anything and everything ever suggested to deal with my pain including 3+ yrs of the mental therapy to no avail the only thing that ever gave me relief with no side effects was my pain meds, i am now planning my death as i have been almost a year without my meds my life is about terror, torture and severe pain i am hanging by the proverbial thread, there is nowhere for me to turn, what has been done to me is illegal & based on lies of the NIH agencies, both state and federal laws have been violated as have my human rights to medical treatment, any alternative i have ever tried has been my doing, nothing ever suggested by doctors at Kaiser

So far so good, actually, my pain management doctor restored 1 of my baseline medication at 1/2 the strength after one year of cutting it off.

I’ve been in chronic pain for the past 10years. I’ve had 28 surgeries in that time, most of them from 2014 to 2016 and one this year. I have chiari malformation, chronic degenerative disk disease, chronic adhesive arachnoiditis, SI joint disease, I’ll see a watch brightness, IIH and more and i’m 35 years old! My doctors had tried physical therapy which failed, they tried injections which cause me to have some of the problems I have now, I’ve tried non opiate pain meds which failed, and sign clamatory says still take from time to time period I was on higher meds before after I tried to spawn a social cord simulator which didn’t work because i’m too bad off and now my opiates have been cut down to the lowest amounts and is ridiculous because I need my medications to get out of bed and take care of my kids. As of now I can’t get-up-and-go do anything fun I can barely get my kids to the doctor on the meds I’m on now because they are not strong enough. I have to decide today if I’m gonna go grocery shopping or if I’m going to take a shower because one of them will happen because of the fact that I will be in too much pain. We need help in the chronic pain field!!

I have adhesive aracchnoidits along with 2 herniated disc in lumbar region. Severe nerve root damage, dry sack with nerves incased in scare tissue and pancaked and stuck to walls of sack, cord tethering and more. Ive been through phyisical therapy, chiropratic care, light therapy, massage, heat and ice treatments etc. Currently ive been treated with opioids for 12 yrs despite the fact its the only thing that helps. My dose has been dramticaly reduced over past 2 yrs due to new regulations. Ive had several injuries fractured arm with torn rotator cuff which required surgery, kidney stones and shingles with no increase of meds for any of those. I am barely functioning at this point. Medication reductions are ruining my quality of life. I am raising my grandchildren and cannot give them the care they need and deserve. The sad part is just an increase in pain meds would solve this. I am not able to work. Addiction is not an issue. I am always compliant with doctors orders. The way we are being treated is inhumane. Animals get treated better than people in pain.

In answer to the question… Currently I receive Norco and Gabapentin for spine related pain status post an auto accident and 4 spine surgeries. I have never been the same and suffer greatly from Arachnoiditis, sacral dysfunction, nerve damage, compressed lumbar and cervical disks and RSD.
I have been on both meds for about 13 years.
The only other thing my current doc has offered is injections and medicated pain cream? I refuse them. And this is why…
I started seeing that particular Pain Management Doctor just 3 yrs ago when I moved.
I have been in Pain management for 26 years…
Under the care of my previous Pain docs…
I have already been through it all…
cervical and lumbar injections galore over many years (I now become ill from them and cannot endure the long term side effects), various types of physical therapy, aqua therapy, Spinal stimulator, medicated creams, acupuncture, yoga for chronic pain, craniosacral therapy, psychological therapy etc.
I now know what works and what doesn’t. Patients need to be listened to.

I was on opiates for 7 years. Now my pain management doctor is weaning me off, “due to the cdc” she said. My medicine is the difference between taking care of my 2 sons and providing the only income in our house, or being bed-ridden. Without my pain meds I can’t walk at all. There is horrible pressure and pain in my spine. Ive been offered everything else possible and tried them all. Nothing works like my pain meds. Suicide will be the only answer when they are gone as I can’t can’t tolerate severe pain 24 hours a day, 365 days a year. Thanks

I have CHIARI. It was discovered in 2016 when I was 64 and in the hospital after a suicide attempt. I have been doing pain management for 37 years, 17 in a formal pain clinic setting. I lost the meds I was taking and helped in 2014 when the TX laws were changed. My history is a long one. 24 ortho surgeries and a brain decompression in 2017. 3 other non ortho surgeries.

I’ve had many epidurals, trigger point injections, dry needling, acupuncture, TENS, Botox injections in muscles in severe spasm, steroid injections, nerve blocks; Sent to yoga, massage therapy, water PT, regular PT, swimming, craniosacral work, chiropractic, pelvic PT, EMDR, psych therapy,
Ketamine infusions. Pain Mgmt wanted to implant a stim but couldn’t figure out how to map it because of so many problems so it wasn’t done. Meds…Anti depressants, muscle relaxers, anti anxiety
& opioids

As I’m sure you know, it’s not easy to answer this. Because I’ve broken my collar bone in 2 places (old injuries) have Sacroiliac joint dysfunction (left side, from a separate lifting injury) and bad TMJ syndrome issues that spread down from my jaws to my shoulders as well as my upper and middle back and body fatigue from years of lifting musical/sound equipment, I’ve had to seek help w/ my chronic pain. At the moment, I can’t sit or stand for more than 20-30 min before experiencing tremendous pain, mostly in mid & upper back, shoulders and lower left sacrum when I’m standing too long. A few years ago, my doctor started me on NSAIDs (Ibuprofen 800) and a muscle relaxant. When the nsaids didn’t help, my Dr. Started giving me Lidocaine & Prednisone injections and pred tablets for a short time. But my insurance doesn’t cover the injections and she had to stop that when the clinic I go to got on her for doing it for free. apparently it costs approx $400 – too much for me. I was then given referrals to specialists (pain mgmt., phys therapy, othropedist), had X-rays and MRI’s taken (going for another MRI today) and moved up to opiods as well as muscle relaxants. When the lower level opioids didn’t help as much as needed after a few months, I was additionally given Gabapentin to help w/ the sacroiliac pain/discomfort and, over the course of a year or so, eventually put on CR opioids 2x/day and started on IR opioids 4x/day, if needed, which is where I’m at now – though my Dr. Is slowly bringing down the IR due to pressure she’s getting from the Gov. I’m still in Phys therapy but because of my work (Event DJ, special event prod.), I have to lift things and stand for long periods of time, even w/ an assistant, which exacerbates my pain. Oh! And the pain mgmt referral Dr. is a joke – I went to him 2x and when I wouldn’t take meds RX from his associates, his office stopped caring about me. I was supposed to get aquatic therapy but his office never put in the referral. His is the only PM that my insurance will refer and for a whole year his office wouldn’t book my appointment b/c they had a beef w/ my insurance (Medi-cal through L.A. Community Care). So I keep going to PT, do my exercises and take the meds my GP prescribes me, though she says the Gov is coming down on her now. I just want to be pain free but I’m pretty much caught between a rock and a hard place.

I’m currently under the care of an amazing physician who treats me as a palliative care patient with respect and empathy. I’ve tried antidepressants, anti seizure meds, anti inflammatories, OTC meds and physical therapy without success. Only pain medication is effective in allowing me some quality of life. I’m not able to do yoga or most types of exercise. My insurance doesn’t pay for alternative therapies. I was not always treated with the respect or appropriate care I deserved. My spine surgeon diagnosed me with Arachnoiditis, an inflammatory condition of the spinal nerves, with no cure. Unfortunately, he sent me to a callous pain management doctor who looked at my images and said ‘yes I believe you have Arachnoiditis, now I have to reduce your pain meds because I never prescribe more than 3 pain pills a day, and I want to inject your spine with steroids’! I agreed to the steroid injection and my condition worsened. Epidural steroid injections are contraindicated for Arachnoiditis by most experts because it can cause worsening of the pain and progression of the disease. Most people aren’t aware that these injections are NOT FDA approved. The steroid bottle has a warning label that the steroid is not to be used that way. Patients aren’t often informed of that or of the potential complications, including developing Arachnoiditis. As an admin of a support group, I’ve become aware that many pm doctors are capitalizing on the current opioid hysteria by performing many more of these risky injections. Some members report their pain contracts require they agree to them in order to receive pain medications. The result I’ve witnessed, is an increase in people with Arachnoiditis and intractable pain conditions. Every day more members report having their pain medications forcibly reduced or eliminated, due to their doctors fear of prescribing. The result is they often become housebound, bedridden and live in severe pain and despair. Many develop complications of untreated pain, sadly, some choose suicide. The DEA campaign targeting legit physicians has been successful in creating fear among physicians. The CDC Opioid Guidelines have also contributed. Pain patients are the casualties in this illicit fentanyl crisis, but media has failed to report this. Society needs to be informed of the discrimination being targeted at pain patients by anti opioid zealots and our government officials. Thank you for championing our cause! MG@ ShareOurPainAr

I’m disabled in severe pain due to a reaction to the antibiotic Ciproflxacin (known to cause tendon rupture, toxic neuropathy, & in some cases like mine, autonomic nervous damage). I was dxd with toxic neuropathy & CRPS (more painful than amputation). I’m unable to take nsaids, tramadol, aspirin, and a host of other meds due to adverse reactions. The only thing I can take that brings my pain down from a 9 to a 6 is a combo of oxycodone, soma, and low dose ketamine. Without these I’d be completely bed ridden. I’m only 40 years old. I worry that I’ll be taken off my meds due to this opioid hysteria as I’ve heard so many others have. The first pain clinic I was with fired me when I refused to take any spinal injections or get a spinal cord stimulator. After what I’d been through, with this having happened to me because of a pharmaceutical, after reading & researching the risks vs benefits of spinal therapies, my husband and I agreed it wasn’t worth the risk for me to do these spinal treatments. Not only can they make one worse, but I know people who were damaged by Ciproflxacin who got the SCS and developed horrible problems such as arachnoiditis due to the permanent soft tissue damage that the antibiotic had done to their body. As soon as I told the doctor we decided not to do spinal therapies & instead were trying to find a ketamine specialist because the ketamine therapy is very low risk & has shown great promise for CRPS, we were thrown out of the office & I was treated like a drug seeking criminal. The dr. was also upset that I wouldn’t try Gabapentin or Lyrica. I’m not comfortable with taking an anti-Seizure medicine when I don’t have epilepsy. I already have enough problems. I’m not going to take something that could leave me with permanent sexual dysfunction or worse if I were to have yet another rare reaction to some drug I’ve never taken.

The only reason we are even talking about a so called “opioid epidemic” is because the pharmaceutical industry wants us to. I am getting proper treatment at the pain clinic I’m with now, but even they require now that I have naloxone on hand. Medicare was billed for and paid $9,000 for the naloxone which I will never need.

Expired patents on opioids mean pharma needs more profitable drugs to be the most prescribed. I should be able to make decisions on my way of pain relief w/o being treated like a criminal.

What is your physician offering you as choices for pain management and in what order?

2. (Yoga, CBT, Physical and Mental Health Therapy, Meditation, etc.), (NSaids, gabapentin, and or anti-depressants), (Epidural injections, pumps, or spinal cord stimulators), (Opioids)

#4…however, minus the opioids due to these new opioid guidelines! The problems I now face are:

1. The Doc wants to do more epidural injections, but the last time he did one, I awoke from the light sedation screaming and crying in such pain and agony, all the while having many people holding me down. Now, herein lies the problem–the insurance company will NOT allow him to give me slight more sedation! Said I was “at my Max.” Really? My Max? How do THEY know what is at “my Max?!” My pain doctor is so discouraged. Said this is the reason he’s considering retiring! Quoting “Why do they (insurance companies) need me anymore?!” So, because of that horrible incident and because the insurance company (an Ohio Medicaid company aka CareSource) won’t allow my doctor to increase my medication sedation, I will NOT have another epidural injection.

2. No NSaids for me because I got a bleeding ulcer and was hospitalized!

3. I was doing yoga WITH opioids. But now that my opioid medication has been decreased –I can no longer do yoga!
It’s so frustrating!

I am 60 yrs old. I have degenerative disc disease and several other conditions. In 2001 I had surgery where they put a metal cage in my back to stabilize where the discs had disintegrated and to stop the pain. This has caused me to have severe pain 24/7/365. I have been stable on my pain meds for almost 7 years. In January 2019 Medicare will no longer pay for my pain meds at the current dosage. I am classified as an overutilizer. That is anyone above 90 mg mme per day. This is serious. I don’t see that taking away the only treatment that I have found to save the lives of people using illicit drugs even enters into the equation. I have tried all of the alternative treatments that my body can stand and I know what works for me. Not what works in some useless study. This has got to stop!! If I am no longer able to get my pain medicine then I will no longer be able to live. For me it’s the oxygen that I need to breath. The pain can be so severe it is debilitating. I have been on permanent disability since 2011. Employers don’t want someone that may or may not show up to work.

I would say number 3. My doc was into the yoga, meditation, accupuncture way b4 the so called opioid crisis, 16 years ago. She has always been very conservative and only progressed to stronger meds after she got to know me. I used to roll my eyes at these suggestions but she was right. BUT I would tell her you have to get my pain down before I can do these things. Do these things make my pain vanish, no. But they bring it down a notch and mentally can handle pain better. Ive been on neurotin for about 16 years.
Im the one who suggested injections for nerve damage. One seedy doctor tried to get me to agree to a pain pump for a diagnosis I never had. These things are not the solution but an aide along with opioids for the best pain management.

I think my pain doc and I collaberate well. Except for one time after another botched surgery. The pain was so severe and I was deteriorating physically. She wanted to put me on another antidepressant and I yelled at her, saying it wouldnt make the pain go away. She agreed to up my meds but had to see a pyschiatrist and go to pain classes. Waste of time and money.

I’m answering for two people who attend the same pain clinic. My elderly mother, who is 73, and myself. My mother suffers from a severe spinal stenosis, and other assorted pain problems from arthritis, wear and tear, and joint replacements. I would have to choose option one for the order of pain treatments offered to both of us.
We are offered painful invasive procedures (injections) first, anti-seizure meds or antidepressants second, and opioids last. This particular pain clinic has no requirements for therapy like CBT or Yoga. Exercise IS recommended, but not tracked in any real sense. Interestingly, we are told that prescription anti inflammatory drugs should be prescribed by our PCP. I hope this answers your question!! Thanks for collecting the data!
Another note: Our medication can be discontinued if we don’t comply with RFA treatments and epidural steroid injections. Since my mother is on Medicare, the pain clinic schedules and requires MORE procedures. She’s scheduled for 3 procedures this month, or she will lose access to her opioids. This is stipulated in our pain contract specifically. It’s blackmail. We are also required to take different opioid medications for the sake of the urinalysis we undergo monthly. It doesn’t matter if the same drug works for both of us.
My mother is also being forcibly tapered down from 120 MME, presumably in response to the ridiculous CMS requirements. She was on 4 10 mg Percocet, and 2 20 mg OxyContin a day, and has been tapered down to 10 mg of OxyContin 2x a day and 3 Percocet for breakthrough thus far. I’m hopeful she won’t be tapered any further. I’m largely helpless to prevent the tapering or the forced invasive procedures unless I want to find her a brand new doctor in this hostile environment. We live in fear we will lose our medicine, or sustain harm from constant invasive procedures that aren’t FDA approved. It’s a sorry state of affairs.

I’ve been in pain management for 16 years and have seen it all. Chiropractor, 3 surgeries, dozens of MRIs, multiple dozens of injections, opioids…the whole gamut of options. I’ve written an article about the dangers of the “fail first” approach for chronic pain patients. Link below.


It’s critical that doctors and patients have the first and primary say in their care; insurance companies should not be able to block access to needed treatments on the basis of saving themselves money.

I have Lupus, Fibromyalgia, bone on bone Osteoarthritis in my feet, lower spine, left knee. I have Raynaud’s syndrome, Restless Legs Sydrome, IBS & a vague diagnosis of “non specific auto immune diseases”.
I also have had a Subarachnoid brain hemorrhage.

I currently am on Mobic (can alternate with Naproxen when having flare ups), Tramadol, Venlafaxine, Requip. These meds have allowed me to function in a very limited manner for the past 8 years. I still have pain, every day & everywhere.

In the past, I’ve been prescribed Lyrica (affected my vision), Cymbalta (holy HELL, would not give that drug to my worst enemy), Neurontin (allergic, thankfully).

In the last 2 years, I’ve been offered nothing different. I don’t want more drugs to mask my pain, I want to know the “why” behind autoimmune disease causes and a way to stop the progression of those diseases.

I fall into the 1st category. I was offered gabapentin and cymbalta and CBT therapy to start with. Eventually moved on to opioids in conjunction with alternative therapies such as yoga tai chi

I was told if I don’t agree to injections, I’ll never receive meds. Even though the doctor said I’m not a candidate for injections due to CRPS.

Gabapentin. Had terrible reaction..cannot take it.

NSAIDs, Tylenol, PT, meditation, yoga, memantine (Alzheimer’s drug) for pain – doesn’t help pain at all.

Refused pain pump – doc said it’s only for cancer patients.

When my opioids we’re taken away I was first offered epidural steroid injections, when they failed and actually harmed me I was offered gabapentin which I rejected and then given a script for 1 norco a day with a requirement to return from out of state every 30 days for a refill. Prior dose was 4 norco a day