What Do You Want Your Doctor to Do?

What Do You Want Your Doctor to Do?

When Dennis Capolongo wrote a story on “bored pain physicians” which we published on the National Pain Report last week, it started a conversation among our readers about how they are “treated” by their physicians.

Before we share some of the reader reactions, a word about Dennis. He has been fighting using compounded formulations of steroidal injections of epidural steroid injections (ESIs). He was compromised himself by an injection or injections.

He has been fighting for his own treatment and that of many others. He is a true pain warrior.

His story—which really spoke to one of the major issues that our readers talk about—centered on whether doctors are “bored” with chronic pain patients. Some of the responses are worth sharing.

Jeanette French said, “There are bored doctors for any chronic condition, especially un-diagnosed ones. I’ve been sick for over 3 years, no one knows what it is, and no one orders tests, I must ask for every test or scan. I am left to self-diagnose.

Cindy (no last name) wrote, “I haven’t had that problem, but what I have had is that my doctor’s nurse practitioner, on my monthly visits, has one foot out the door the second she hands me my prescriptions, and if I want to ask a few questions, she indicates that she’s out of time.

Sandy Miller said, “I can relate to this. My doctor doesn’t take the time to listen to me. I’ve been to so many pain management Dr’s that it’s to the point of them thinking I’m drug seeking instead of seeking better treatment and trust. I’m to the point of not knowing where to turn for help with my CRPS.

She signed it, Frustrated.

Kathleen Kaiser indicated she has a long experience with “bored” physicians. “I’ve experienced this enough now that I can spot it with my hands tied behind my back. Doctors hate us patients using Dr. Google, but I’ve had no less than 3 times when I found my diagnosis when my doctors didn’t.”

How about you?

What are your feelings about your physician or nurse practitioner?

Do they pay attention to you? Do you like them?

If so, leave us a comment!

If you agree with our readers who indicated they are rather frustrated with how they (or you) are treated, let us know.

If we get the right kind of responses that can “model” what a positive patient-physician relationship should look like, we’d love to do a story that speaks directly to providers.

Hope you share your thoughts.

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Authored by: Ed Coghlan

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Rachel

I just have to say I have the best pain management doctor. He takes the time if I need to talk to him, if I need an in office procedure, and makes sure I am taken care of if i need a more invasive procedure, etc, etc. He also lets me come in at the same time and same day of the week every monthly visit. I do have to commute about 36 miles each way and to see him though. I have been his patient for about 12 years now. My issues are with CVS Caremark which is my prescription insurance. They are absolutely ridiculous what they will cover and not cover but they happily take my money every month for the insurance. So, I have a PPO and can choose not to use their pharmacies and give them anymore of my money. I choose the mom & pop pharmacies that know my doctor. I rather support their businesses bc they support my doctor’s treatment plan for me and not stupid CVS. I wish all chronic pain patients could have a doctor like mine.

dis may

Right now I imagine I am getting on my doctor’s last nerve. Nor can I blame him. My PTSD symptoms include non-stop talking. I tell my patients, many of whom include a slew of doctors, that I am a PPIA [professional pain in the a**]. My pain has not come close to getting covered in four years. My life came crashing down around my ears ever since.
This is not my doctor’s fault. My doctor saved my right leg; frankly, I feel he saved my life.
I went through a decade of one illness, injury, and/or surgery after another in rapid succession. I got PTSD during cancer surgery in 2008, while unconscious. I diagnosed my symptoms from other people’s responses to me post-op. Then, conducted a lit review & came up with the PTSD diagnosis. 3 follow up evals confirmed it: fresh PTSD, plus my severe childhood trauma returned with a vengeance. I’ll be in PTSD treatment for many years.

I am a poster child for developmental abuse and neglect. I was getting healthy when the CDC guidelines came out and ruined my life. It is not my doctor’s fault. I do not want him to give me all the medication I require because it would compromise his practice of anyone at all. There is no other doctor who would treat me so well as the person who does treat my pain. I am very lucky!!
Yes I am suffering horribly from the intentional malpractice mandated in the US. But doctors are victims too here. I’ve researched and written on this subject. My analysis is that MDs are bullied by big pharma and insurance industries. I do not award medals. But I certainly give thanks where due. I am grateful to my doctor. But for him I would likely have died twice!

The treason at DEA led many doctors to refer patients to a soon-retiring colleague who would risk DEA attack on his own license and allow younger doctors to remain in practice. “Bored pain prescribers” were the result. Their sole function was to write prescriptions other doctors were afraid to write. Until the DEA stops breaking the law, the fears will persist and the problem will continue.

Janice

For 11 years, I was told by my PCP that I was a model patient who was really helped by the opiate meds. I couldn’t do a lot of what I wanted but I had gotten a life back. She saved my life. That was before 2016.
Now, she has done a 180 and tells me I’m on too high of a dose, has tried to get me to try suboxone, doesn’t listen to new symptoms, and talks like everything she educated me about the opiates was wrong. I don’t buy it. I used to go see her by myself but now I have someone with me at all my visits. My BP at my last appointment was 180/110.
(usually runs 120-130/70-80)
There’s no encouragement anymore, she is spewing the lies about opiates and pressuring me to either start weaning or to use suboxone. I keep refusing because what I am on and the dose, which hasn’t changed since I was titrated up to a dose that worked for me, is still working. When I first went to her, she emphasized the mg’s weren’t important and to not focus on any numbers. She said that it’s whatever dose that gives you the ability to function again.
Now I hear it’s just the opposite which of course does not make sense. I haven’t had a good appt since 2016. After I was last seen 3 months ago, I cried every day and was very depressed for weeks afterwards. That’s not exactly helping my pain either. I have an appointment tomorrow and my anxiety has been going up all week, insomnia, increased pain and extreme fatigue because I am tired of fighting and being lied to. I want her to be the caring physician I first met and who I credit as saving my life. I don’t recognize this doctor anymore.

Terry

You are all 100% right, the docs and P.A.s are bored, bored, bored. My P.A. asks me the same exact things every time, “so last time you were here you had leg pain, pain in your hands, feet pain and back pain, and your pain is shooting, sharp, burning, widespread, and throbbing. Is that the same? And moist heat and ice help, sitting too long or standing too long hurt you, on a scale from one to ten what’s the lowest and highest your pain has been?” That’s the whole tamalè. Same thing, e-v-e-r-y single time. He never wants any details about how I spend my day, my daily struggles, events that I’ve missed or events that I’ve gone to that have made me couch bound for the next two days, how it affects my mood, the depression and anxiety I feel daily, how I miss my old life when he was prescribing the correct amount of pain meds. I have told him before how I had very few limitations when I was being prescribed meds that made my life worth living. I’ve tried to explain that I have a liver enzyme that makes me a rapid metabolizer, somebody who needs three times the amount and strength of “normal” people. I think if he showed some compassion and some sympothy, that it would help me cope a bit more. I’m like every chronic pain patient, I just want to be taken seriously, I want to be heard and I want my pain acknowledged. It’s a little thing but like my wife says “there’s another 2%, and anything that helps, no matter how small it is, will add up and maybe then someday your pain will be more tolerable.” It’s how I live my life, and she is 100% correct. Since the DEA shake downs forced my doc to reduce my meds from 195 mgs of oxycodone to 60 mgs daily my life is that of a 100 year old man. I am frail, unbalanced, depressed and miserable, which most people that knew the old me have definitely noticed the changes in me. I’m a 60 year old man with a lot of life left in me and maybe someday they’ll will make adjustments to their guidelines and I’ll come ROARING BACK. God bless you

After reading all the comments here and on the other thread, my faith in the medical establishment remains sadly pessimistic. So what do we want our doctors to do Ed? Let’s start with 5 basic things… 1) Spend more time with us, not less! 2) Compassionately grasp the horror we live with everyday. 3) Challenge the conflicting Insurance companies and Federal agencies that impose broad & unrealistic restrictions to the practice of medicine through their industry representatives. 4) Impose self-mandated yearly refresher courses in their field of practice and the medications they use. 5) Anonymously report dangerous colleagues when clear evidence of malpractice is uncovered. Over the long term, all of these changes will have a beneficial impact on patient care and spiraling costs.

Brue

Having the pain doctor not pay enough attention to me is the opposite of my problem. The more they probe around, even though my file is right in front of them, the more physical and financial pain I undergo. I had a PA cut my meds with no discussion. Brilliant. Took me a year to restore my dose. For years they’ve tried to stick an electronic stimulation pain device in me. The doc that owns the clinic has used me as a test case for his PA’s, performing impromptu lectures with this pump as the subject matter. He finally says, “I know you’re a smart guy, but if you change your mind, the option is there. He wrote in my file NO MORE TREATMENTS. I simply go in there now, pee in a cup, and get my meds each month. For all of the people unhappy because that’s all that happens to them anymore, remember that if there’s nothing they can do, and they’re giving you sufficient pain relief, they’re doing their job. If you just want attention, it’s not their job to substitute for any lack of that in your life. Excuse me if it ruffles feathers, but indeed this is mainly an issue with female patients, who as a rule, are used to getting lots of attention when “young”, and don’t feel as “wanted” when they lose their appeal later on. Maybe it’s time to quit blaming authority figures and take responsibility for your own emotional needs. Or maybe just not have as many of them. It really is true, people don’t want to listen to it.

Cher, if you wish to view more about the perils and risks associated with ESI therapies, which are neither approved nor have proven long term efficacy, simply click onto my name above this post to be linked to the EDNC’s YouTube Channel. There you will be able to see & listen to the truth regarding these lucrative yet globally controversial injections that have literally ruined the lives of tens of thousands of people annually, and that’s no exaggeration. Nearly 2 dozen countries have already complied with Pfizer’s request to contraindicate (ban) the practice due to severe risks (including death) and low efficacy. To say I was simply “hurt” by ESI treatments is a gross understatement but that’s not your fault. If you wish to make contact, you may wish to mail me directly through the campaign at TheEDNC@verizon.net : )

Lisa

Cher,
I hope you don’t mind, I saw you were asking about spinal steroid injection. I have been having them since 2003 and have your issues and more. I have them in my Lumbar and Cervical areas every 12 weeks. They are helpful and reduce the amount of pain I experience. At first I was getting the injections more frequently with mixed results but kept going due to the fact that I was getting some relief. I now continue due to the fact that pain control is my only option. They are giving me better daily function and I am thankful being a candidate for the treatment. Good luck to you for whatever you decide on. God bless

Lisa

Robin you are exactly right. The doctors are also frustrated with the red-tape and hoop jumping as we are. I am lucky to have recently found a new PCP (3rd one now) who is really trying to help me and I feel will be an asset in my ongoing effort to control my complex issues and pain. Then there’s the one’s that are becoming more frustrated and lax. Not my first goat-rope with this situation. But like some other, I’m not afraid of letting them know where I stand. If you’re not willing to Stand up for yourself who do you think is going to. Fear of speaking out will get you Nowhere but in stuck where you are, what’s the point in that. You are your best advocate. They do not teach mind-reading in medical school either. You are the one living in your body and if you’re in tune with it, you need to figure out a way to convey it to your healthcare team. Chances are they have never been seriously injured and have no clue what it is to be in chronic pain. The better you can explain it in the shortest time possible than chances are they are willing to listen and perhaps understand. And for goodness sake, lay it out and quit being silent about your needs. If they’re not doing anything, you don’t need them, move on. Do your research, stand your ground and be strong enough to do yourself good. Don’t become part of the problem become part of the solution.

Dr. Mark W. Helfand

I’ve had CRPS for twenty years. In all that time, I’ve had two main doctors that treated my pain. They couldn’t be more different. The first was a pain specialist at a major hospital. He was the typical specialist. His waiting room was always crowded and I never waited less than 45 minutes to see him. He heard enough of what I said to increase my pain meds but never really listened enough to help. He prescribed plenty of pain meds, but I was still in agony and too “doped” up to function. It’s a long story, but I had an intrathecal pump inserted in my abdomen that pumped fentanyl into my spine. It wasn’t helping and he kept ignoring me when I asked to have the dosage increased. We had a falling out when he forced me into rehab but then increased the dosage of fentanyl in my pump. I was in rehab for a week but still was getting fentanyl the entire time. It made no sense. Then my luck changed. I told my primary care doctor my story. We had known each other since we did our residencies in the same hospital. (I forgot to say that I’m a dentist) He offered to take over my pain control. He had always been the Marcus Welby type doctor and continues to be to this day. In all the time I’ve been his patient, I’ve never been rushed and only had to wait twice when he had an emergency. While my first “doctor” was a nightmare, my current doctor is a Godsend. I consider him to be my angel. He listens to me and we discuss what to do next. When the opiod crisis occurred, nothing changed. He never mentioned reducing or stopping my fentanyl. In fact, we just increased it. I’ve even told him that if he feels uncomfortable writing prescriptions for fentanyl for me, I’ll understand. I don’t want to get him in trouble. Every time I tell him, he tells me not to worry because he isn’t concerned. Given everything I’ve read and the state of prescription medications, I consider myself very fortunate to have such a great doctor. I’m sorry for those that don’t.

Tabitha shileds

I should add since
My meds were cut in half I need injections far more often , my ability to do anything other than get to work and home then to bed is my life . My quality of life has been cut in half , I went from a dosage that was working for years to being in far more pain far more often. And no one cares ..they just want us to disappear because they do not want to admit what the problem really is ., A unsecured southern border . They attack chronic pain patients because they afraid of the drug cartels in the failed narco state of Mexico

Tabitha shileds

My doctor is great , although my medications have been cut in half because some politician looking for headlines decided to to set limits in Ohio of maximum MME . Which is.ridiculous . Who does that . Would they do that to diabetics? It is insanity, hysteria and no political entity care or there would already be the Chronic Pain Patients Protection Act

Acker Beth

Our medical profession has many bored physicians! Among the top ones are the hospital attending primary doctor, who see you every day from admission to day of discharge. They see you five minutes at a time yet they assess and prescribe barely knowing you or your medical history. They change your prescriptions, especially pain meds, to what they THINK you need without regard to what may be working for you. What’s worse is they don’t share with you what they’re changing or why, they just do. And attempting to get a necessary change, with good reason, takes an act of God. They don’t care about you, if they did they’d include you in the plan… but they don’t. Today hospitals don’t care how much pain you’re in, they push Tylenol on you as if it’s a magic pill. Heck, if Tylenol ever did anything for any pain patient it would truly be a miracle!! True chronic pain patients don’t want pain meds, or any meds for that matter, but we need them. Not in an addicting way but in a “I’d like to have a somewhat normal day and the only hope to have that is pain medications that actually work” way. Chronic pain patients live in fear that IF they did abuse their pain meds that they could be taken away for good, so we don’t mess with that idea even a little bit. When is the media, politicians and general public going to get that?!!! The abusers aren’t prescribed pain patients, they’re illicit street purchased drugs users. Stop punishing the patients who use correctly, who need proper pain management without being looked at like we’re abusers We only want to have our pain controlled enough so we can have quality of life, we deserve that!!!

Stacie Wagner

My doctor’s ask the same basic questions to cover their butts but I’m afraid to insist on more help because I will be dropped or referred away from their practice.
Every month I am asked “What do your pain medications allow you to do?”
Answer ” go to the bathroom by myself.
Dr. Question “what else do you do to help control your pain?”
Answer ” heat, ice if tolerated, lidocaine creams, cbd oils etc.”
Question ” what do you do in a normal day?”
Answer ” I do my ‘streches’ or I cannot use my left leg at all. I do ‘commercial crunches’ where I righted my abs 1 to 3 times during commercial breaks. Anything else is out of the question.
Question ” How recently have you had a pill count or urine drug screen.”
Answer ” (the last test or count)”
Question “Do you have any questions?”
Answer ” not really…” But inside I’m screaming how can anyone live in this pain? How can you see people like me and not be protecting them? Can you help me kill myself?
This is reality. My reality is hell. I’m terrified of losing care again. I know I cannot continue to live at only 90 mme and I do not know how to help myself because I am terrified of losing care, more than terrified of being locked up in a mental ward and terrified of my intractable chronic pain.
Btw doctor’s don’t care about anyone but themselves. That’s the reality I know is true. I have begged on my knees for help and they have walked out of the room.

Holly

All these replies make me cry. I am so sorry everyone. Please God, help us! I pray every night for all of us.

Holly

I am lost in the medical world with the exception of my Gastro Dr. I had a CT scan done a few weeks ago ordered by my primary Dr.. After waiting for what I felt was enough time for the results, I called my primary. She had a NP or someone else call me back. I kept asking questions and she would put me on hold to ask the Dr my questions.. I finally realized my Dr. was right there but would not get on the phone! I am currently looking for a new Primary Dr.
As far as pain management, I am very lost. I was cut back AGAIN by 10% a month and I simply cannot get on top of my pain now. I am so anxious, depressed, knots in my stomach, is this the way to live? I am being FORCED off a medicine that helped my quality of life.There is no” First due no harm” anymore.

Robin Birdfeather

It’s important to broaden this discussion about ‘bored’ doctors
into the bigger picture of the pressures on the entire medical system by insurors. Profiting is the name of their game as everybody really does know, but often forgets to factor that in to the time limits put on doctors, as well as the plain old lack of pain education in medical school. True that some doctors may be bored but they’re also on a running time scheme that is dictated by insurance companies.
Can we maybe imagine another way of going about things, to as much as possible include the medical profession in the discussion? More than one doctor has told me of their frustration with their lack of training and their imposed time constraints. It’s not exactly a Kill the Messenger scenario from frustrated patients; it’s a huge corporation-for profit and damn both the patient and the doctor problem…
Time for the big national coordinated spotlight on profit-taking over helping our health.

>10 years pain

I want my Dr to continue to care as they do. I know that much. I just need them to slow down during this government war against pain patients and realize the treatments that I have already failed before I became their patient are not something I want to pay for again when I have a family that has obligations that must be met first. Try to come up with a solution to this government smack down on all the paperwork you must have before suggesting things that require a ridiculous amount of money to be spent from my family’s budget that just isn’t there on treatments I know have already failed me. Please, give me a minute or two to discuss other medical conditions that could be affecting my chronic pain condition that I’m seeing you for as that could lead to a new treatment possibility that both of us find acceptable to try for a period of time or a new test to explore looking for answers to my complicated situation. I know I won’t be completely pain free. Please help me be a better me until there is a cure for what I have. I want to live more and do more. In order to that, I need your help. I don’t enjoy coming to see you every month. I would much rather be anywhere else then in a Dr office waiting to pee in a cup like an accused criminal standing trial, awaiting sentencing, My time could be spent doing so many other things. I used to enjoy hiking and camping! I would love to take my kids to a few special places I have seen. Why does everyone think we enjoy being at the Dr office, throwing our money away? Sorry but I wish I never had to meet you in the first place or even knew your name. Since I do… Thank you for caring about your patients (you are a rare one,) please slow down a little more to think about the bigger picture for the patient as it’s been over a decade now for me and I can’t spend money on treatments that I have already failed just because of this government declared crisis. I don’t deserve to die because of under-treated pain complications.

I was known as “the only Dr who ever really listened to me” and was framed by an unethical social worker who blocked me from being able to be relicensed by my medical board after being cleared by both an excellent pain physician and multiple objective tests proving I couldn’t GET any cleaner, as I’ve stated many times. I’m TOTALLY DISGUSTED with the number of Drs IN PRACTICE who DON’T LISTEN to their patients, and WORSE, DON’T BELIEVE THEIR PATIENTS when they DO bother to listen. I’m out when I truly LOVED THEM & LISTENED & then these Bozos who don’t care at all charge exorbitant fees to do NOTHING of SUBSTANCE to ASSIST those with legitimate pain. BUT I have 7 GRANDKIDS 3-11 who are THRIVING with EXCELLENT FUTURES ahead of them thanks to the time I’ve spent with them instead. I also have a private free ministry giving advice on how to TRY to get those IDIOT Drs to listen based on how I treated patients & would if able. God allows me to help in other ways for now. I’LL NEVER NEGLECT ANYONE WHO ASKS ME FOR HELP. I just can’t directly treat them or be paid.

Carol

Pain doctors are a joke. Glorified pill pushers. I have had them say to me you have all ready lived longer than you have left to live. We don’t touch our patients or send you for tests, we just give you medicine and schedule shots.

Stephen

Hello, my name is Stephen and I have been a cpp for over 5 years because of lumbar and C spine issues. My primary care doctor is wonderful, caring, and compassionate. However, if he is out of the office, I have to deal with the ever changing rotation of PA’s and NP’s in the practice.

A nurse practitioner decided that’s she (not my doctor) should start tapering me off my pain meds in 2016.

A different NP (in 2018) took 10 days to write my monthly scripts and put me into withdrawal, when she finally did get around to write them, it was for a pain medication I had never taken before (my doctor was out of town).

Last month, I requested a refill of Percocet through the patient portal just like every other month. I received a reply from a recent PA graduate (4 months experience) telling me that I needed to go to a pain clinic. He obviously did not even read my chart.
Whenever a pa or np sticks their head in the exam room I get very nervous. They are clearly afraid of patients like us and really do not want to treat us. If you find a compassionate physician, my suggestion is to try and only interact with him/her and avoid seeing anyone else.

Despite all the research backing the efficacy of high dose opioids to treat pain in older adults and legacy patients, I am not able to find anyone who will admit that this is true and therefore I am being “weaned” against my will to what is now a sub-theraputic dose of my pain medication. What can I do? ( I have exhausted all other “alternative” forms of pain control).

Denise Hedley

This is a tough one because I used to have incredibly good doctors. Since I moved, that has not been the case.

My physicians before I moved were very caring, compassionate, and interactive until my pain doctor stopped prescribing and my primary was transferred. Things changed from that moment on. I was faced with finding new pain management and a new primary when I realized I had to leave. After having been in Denver for 25 years, I wonder what my results would have been like.

In my new city, I haven’t had the best of luck so far. I have been poisoned by infusions that were supposed to be wonderful – I’m still suffering the repercussions of those – to inexperienced primary and no pain management to a we will see from new insurance. I’m hoping for the best. I have definitely seen my share of bored physicians since I got here, and they were in fields that should be more responsive to my conditions and my care. I’ve had some hope through the ER with the new insurance. They have told me to come back and they will help me find the right doctors.

Funny how that works as I’m in a position where I’m probably less than 24 hours away from needing the ER again…

Rose Montgomery

After having my GP tell me that she was letting her ‘pain patients’ go because they took too much time from her ‘other’ patients, (a convenient disguise for being afraid to prescribe narcotics anymore) and being referred to a pain clinic that was shut down six months after I had become their patient, I was referred to another pain clinic. I’ve been going there for two years, and the staff keeps changing. I don’t get to ‘know’ any of the doctors or nurse practitioners and they don’t get to ‘know’ me, so my progress, or lack thereof is not documented. Do they leave because they are ‘bored?’ They write my prescription after I fill in a form (does it get read?) and there is no time for any questions or discussion. I feel like an inconvenience to them. I want to talk to someone who knows my history and where I am now.

Jan

I see my pain management doctor monthly. About fifty percent on the time I see his PA. Both are exceptional at listening and with explanations. Somehow the doctor keeps me laughing. His wit makes the entire clinic seem like it’s not one. I’ve had a couple of injections and have experienced relief. I feel very blessed to be a patient. I feel if I didn’t have this good treatment and care, I’d be bed-bound.

Bonnie Holloway

I have been to many pain doctors myself. Looking for one that cares. And I always end up going back to my internist. He checks on me. Takes the time to listen. And makes sure that the meds aren’t hurting me in any way. It makes me look like I am doctor shopping. I go to pain doctors to keep my internal medicine doctor safe. He has been my doctor for 25 years. He is getting old, and I worry about him retiring. The pain doctors are always looking for something wrong. Doesn’t matter that I have had two back surgeries, a neck surgery, and have had my right ankle rebuilt. I have hardware from top to bottom. I did not ask for this. I hate, hate, hate it! Not to mention the arthritis. The last time I cried because I don’t do anything wrong! I am so sick of it. Don’t they realize that it’s not something we want? Who in his right mind wants to live in pain. If it wasn’t for my husband, I don’t know if I would have made it this far.

Deanne Daniell

The pain clinic I started with more than 10 years ago was caring and very PATIENT-CENTERED. Then it was bought out by ANCORA SPINE CARE. First, all the NPs and PAs were gone. Then the doctors I had known and trusted (and who had TRUSTED ME!!!!!) were gone. Finally, I had an appointment with a new (Nd one of the FEW LEFT AT THIS CLINIC) marched into the exam room, and proclaimed “I don’t prescribe narcotics. YOU HAVE TO FIND A NEW DOCTOR”!!!!! He did RELUCTANTLY SAW HE WOULD PRESCRIBE WHAT I HAD BEEN TAKING FOR 2 MORE MONTHS UNTIL I COULD TRANSFER SOMEWHERE ELSE.
The receptionist slipped me a note as I was checking out with the name of a new clinic! After getting a referral from my Primary Care, I got an appointment. When I got there, I saw a LOT OF FAMILIAR FACES ….. nurses, clinicians and the receptionist who had let me know about them! And the appointment was with ONE OF THE FORMER CARING DOCTORS PREVIOUSLY WITH THE FORMER CLINIC!

Please this is my life! I have been so discriminated against for simply having a genetic bone disease, Ochronosis/Alkaptonuria, that has no cure, because the only treatment for it has been pain medicine!  Explain to me how labeling patients who have taken opioid safely and responsibly for over twenty years are now being labeled as having “opioid use disorder” causing even more harm to them! LABELING ME WITH A DISORDER IS JUST MORE DISCRIMINATION! You have taken away my doctor, along with all and any care that would or could help me keep my health. Imagine living with a rare genetic bone disease that has no cure, that causes excruciating and debilitating pain.  Then imagine the prescribed pain medication that effectively alleviated that pain for 26 years is abruptly stopped. Not only is the pain unbearable, but the resulting stress placed on the body prevents an individual from being able to exercise or participate in physical therapy, which is vital to preventing accumulation of Homogentisic Acid (HGA), a toxic acid that can contribute to chronic joint pain and inflammation, in someone with Ochronosis/Alkaptonuria. After being diagnosed with Alkaptonuria (AKU), also known as “Black Bone Disease” as it causes bones to turn black and brittle, I was placed on a very high dosage 180mg of morphine to prohibit my body from producing HGA levels that devour my bones, turning them black and stripping the cartilage and cushions from in between them. AKU, a genetic disease, is caused by a missing enzyme which means a patient cannot fully break down HGA in their body have shown that AKU is the oldest metabolic disease on Earth, and found in Egyptian female mummies! My former physician of 32 years eventually identified morphine as a pain medication that helped without causing a negative reaction to synthetic chemicals that were harming my liver and kidneys. I was able to get my life back.

Cindy too

I’m the Cindy referenced in this column and I think my words were taken out of context.

I see my PM’s NP every month when I have an appt for my routine required in-person Rx pick-up.

The NP used to have time to talk to me each month. She’d ask how I was doing, and while often I had nothing to say since I’m chronic and would prefer to get my Rx’s via mail like I did in Mass, sometimes I did/do have some questions/comments even though I’m there every month. Sometimes, something changes, or I”ve read something I want to talk about. For example, I tell her about columns I’ve read here or elsewhere, about issues in the pain community; deadlines for comments to the govt’; last spring told her about the CDC and FDA statements, and the Best Practices Task Force. I want to make sure that the PM gets this info.

Lately, I”ve gone into my monthly appts with a few questions. She’s answered, but indicated she really had no time, making me feel guilty, and rushed. These days, after the tech takes my vitals, the NP walks in with my Rx’s, and is in a huge hurry to leave for the next patient.

I dont’ think she’s bored with me. I think she’s under time pressure that didn’t exist before. I think the office is understaffed — but is that deliberate or a temporary problem that they’re trying to fixt, I don’t know.

Next month I’m seeing my PM b/c I have questions that are at his level and not the NP”s level. I also want an actual 10-15 minute slot this time.

So, I am having some problems, but I don’t think it’s boredom, and I”m so grateful to have a Pain Clinic that still operates and a PM that works with me in spite of govt pressure he feels.

AskingForGrace

It’s hard to imagine I’m saying this but I often don’t feel “believed” by doctors. How can I engage in a relationship with someone who starts off with dis-belief with me, the patient? The most absurd example is that I now have adult-onset food allergies. I have tests from other allergists with IGE blood test values from Quest Diagnostics. I have to SHOVE them in the face of doctors or else they start telling me that I have food “intolerances.”

Look, I eat the wrong food, I may die. I can’t breathe, okay? And even after they see the test results, somehow they seem to think I’m a hypochondriac.

I actually argued with a doctor over how my body responded to prednisone. I asked him to split the dose in half so I could take half in the morning and half at night, because I breathe better at night (when lying down, with drainage… y’know?) if we split the dose.

Don’t reflexively argue with patients. I don’t care what your medical textbook says, and apparently my body doesn’t care either. And don’t judge based on a medical chart, before you enter a room. Try to listen…

And forgodsakes, women are not hysterical because we have a uterus. Listen to US. Don’t make us bring a man who says the same thing we do, for you to actually listen to what’s said.
My mother JUST went through this. A doctor actually REFUSED to look at the medical records she brought that showed she had back problems. My father had to say it. No, that was NOT professional behavior. That was an embarrassment and that doctor ought to be glad *I* wasn’t there with my mother!

I’m sorry there are lots of examples of what NOT to do. It’s because they’re so astoundingly frustrating that they just jump out in our minds. We are veterans of a different type of conflict, and it takes a toll. I am pretty sure I have PTSD because of doctors. I thought, “I could go to the supermarket and buy food that would kill me… and they won’t even take me seriously. They just make it harder to get help.”

Tracie Lundy

To make it simple. They can’t “fix” you so they don’t want to be bothered. It has taken me over 20 years of severe pain, suffering, depression, you name the horrible adjective to Finally find a Doctor to listen to ME!!! I know what I needed for my body, just need their help and knowledge to get me there. It took a young, Magna mum laude Doctor to do it. He didn’t care about my past. He cared about my future and that is exactly where I’ve been wanting to go for decades.
Why did it take soo long for a doctor to hear me?

Barbara Thurman

Have had same Doctor for 35 plus years. He does try but I’m a very complicated case. Always referring me out to specialist who don’t seem to really care. Very hard with dangerous medication (not talking about pain medication) or procedures. I’ve done it all every treatment surgery even unconventional medicine and treatments. Now just want some comfort from pain medication no euphoria not pain free just some relief small quality of life. My regular Doctor gets it, but do to his fear has cut medication in half. I’m still luckier than many. He listens but only up to a point.

I used to really like my neurologist. He was always making recommendations of thing he thought would help me. Suddenly I was sent to his PA, who is quiet possibly the dumbest person I have ever met. I have learned not to ask her anything because it totally throws her off and she doesn’t know what to say. It’s sad. She only wants to know if “our treatment plan is still working?”. I miss my doctor and my TN is getting worse. I’m stuck with a PA who gets upset if I ask questions. I don’t know what to do.

Michelle

I’m tired of my constant cronic back and legs and back pain.I am tired of the Dr.s giving a small dose of medicine and still leaving you to suffer threw life.

Donna Rock

It started with my move from PA. To TN. The calls the insurance company run around, different laws in TN. prescription issues, pharmacist judgement,tears yelling complete frustration. I even had to fly back to PA. just to get a written script so I didn’t run out of my meds and withdraw, meds I’ve been on for over 15 years, that cost $800. But I stuck it out and thankfully ended up with a better pain management team then I had back home.
I actually like this group the office is run efficiently , timely and without judgement. I get full examinations, labs diagnostic tests if needed and quick follow up calls with results.
Don’t call the white coats and nets for me , I know it sounds far fetched. What’s even crazier is , I get asked about my pain ,my stress levels if I’m doing to much housework etc. My nurse practitioner is awesome we started our relationship somewhat bumpy but it has evolved into a mutual respect and I feel like I’m actually cared about and that they are trying to help fix my issues, not just mask them with meds.
Back home at one point I was on so many different meds I ended up with hallucinations and being hospitalized. I weaned myself off of them for my own sanity. But the team there didn’t seem to care just shrugged and kept moving. I had 5 different NFPs in the time I was patient there , wouldn’t know who I was being seen by sometimes.
My new team in TN. they ask , they listen they respect my input. But what I really like is they treat me like a patient with a medical issue, not a drug seeking addict. And that is so refreshing and appreciated.

Nikki McCuin

My pain doctor is my super hero. I was sent to her when my GP wouldn’t address my chronic pain any longer. Their office decided they would no longer prescribe any opioids, and all patients were to be referred to pain specialists, period. From my first visit, my pain doc listened to every description I gave her of my pain. As do all, she ordered an MRI for both my neck and my back. She also gave me a prescription for Norco, with a higher quantity than my GP, BEFORE I got those tests. She asked specific questions about the type of pain I had, and what I had tried in the past, both effective and ineffective. Then, she told me every method we would try to get the most viable pain relief for my specific ailments. Over the past two years, she has tried every method possible, including epidurals, nerve stimulation, topical ointments, and Botox. When something didn’t work for me, she made note and never tried that method again. I wish every other person that suffers like me could have her for a doctor. Stay strong, Warriors!

James McCay

My pain doctor USED TO BE the MOST BELOVED pain doctor in all of NY, he even had MANY PATIENTS from others states; all the way from Florida to Chicago every month! This was NOT AT ALL because he gave any drugs the patient wanted! Oh no, it was because he built trust and a mutual understanding of; “I’m going to HELP YOU live a better life!”.
He used to speak to every patient for 30-45 minutes (while up to TEN patients were patiently waiting) but it USED TO BE worth the wait- because we all left there feeling cared for & totally understood!

That all came to a SCREECHING HALT when my pain doctor started believing the STUPID 2016 CDC Guidelines and the DEA semi-threatening letters weekly by 2017. Then his totally paranoid local “friend” doctors (NOT pain docs) got in his head telling him to worry about himself ONLY & “[edit] your patients, what have they ever done for you? You’re going to LOSE YOUR MEDICAL LICENSE if you keep prescribing opioids like you’ve been doing!”.

Before these self-serving MORONS got in his head, I was his co-conscience (a very educated, very dedicated 16-year medical professional)! I was the patient who reported the drug addicts who came to me in the waiting room to “spill their guts” of addiction (I’m a very good listener, BUT WILL NOT ALLOW ADDICTS INTO OUR LIFE-SAVING TREATMENT!). These are patients who say “I don’t get the high I used to get, so I take 2-3 pills instead of one once in a while to REALLY FEEL BETTER again.”. These are addict PSYCH patients who need PSYCH help, but there is no FREE NY psych help anymore!
NY State practically abolished Medicaid, and ONLY MEDICAID pays for PSYCH help & disabled transportation. I got double screwed!

So our once great pain doctor now only cares about himself. NO ONE trusts him anymore!

Yet our idiot Mayor & Governor wonder why the psych patients are flooding the NYC streets homeless again (many of them started as chronic pain patients with NO GUIDANCE!)???

Jamie

Bored, cruel, in CYA mode, desensitized to suffering or lacking empathy? Its hard to tell the difference at times.

I tell my dr I’m having severe pain 12 hours a day and only sleeping abt 4.5 hours a night. That I’ve looked up long acting meds I can take once a day to help with that. I’m told my insurance wont cover it. How does he know? He doesn’t. Just assumed. Not interested in looking into it either. Doesnt want to risk writing a prescription that may not be filled yet possibly used against him. That’s not something he should be using as a guide to my treatment plan, yet it is. I’m suffering for his safety.

I’ve done all the injections, the nerve blocks, the nerve ablation. I’ve wracked up thousands of dollars in bills I owe to him. I’ve had to go without other medical care – some recommended by him – to afford to keep seeing him. And worst? Hes the only pain dr within an hour of where I live. I have no other option and he knows it.

His staff is awful. They care about 3 things – collecting money, going to lunch and closing the office early.

It’s all horrible.

Bram Judy Cast

I feel most pain doctors won’t listen because they haven’t had, or don’t have severe chronic pain themselves! Maybe they would be more empathetic if they did.

Tami

Im thoroughly frustrated because I feel my pain is being dismissed that it’s as bad as it is. I used to be active, work two or 3 jobs, keep my house spotlessly clean, and be able to go places and do things when my pain was being managed properly. I have no quality of life anymore, spending 18-20 hours a day in bed. Crying more days than smiling because I feel miserable. I’ve had Drs in the past that did listen to to me when I talked about how bad my pain levels were. I once had a physician assistant at a clinic say, why do they send me patients like yiou? You need a psychiatrist, lady I have one by and how rude was that of her to say to a patient that was reliving horrid memories because of ptsd. When I explained I didn’t want to be touched by a certain physician it didn’t matter. Needless to say, I never returned to that clinic again.

Terri Wetz

I believe that I’m one of the very few chronic pain patients who can say I lucked out regarding an early (and correct) diagnosis of RSD along with on-going, quality care. My pain management Dr always spends as much time with me as needed, continues to explore alternative pain relief methods & not once in almost 17 years has he ever acted bored or try to rush me out of his office. Because of his compassion he has patients that come from all over the U.S. to see him! If anyone out there is willing to come to Columbus, OH he is still accepting new patients. Contact info: Dr. Sachida Manocha. Ph: 614-262-7246. A couple of things to note; he will NOT prescribe pain meds on your first visit normally, and he is certified to prescribe marijuana.

Without his care, I can honestly say that I would probably not be here today. Thanks for listening!

my husband had a first of a shingles shot, requires 2 shots. He was telling his friend who is a pharmaceutical scientist, which is a person that makes medications. He was telling her his side effects that he had from it. She thought he was B. S until she had the shot herself. She told him at first in her mine she thought he was lying, b. s. She told my husband he was right. Here’s my response on a positive relationship with my doctor. . 2. Will take me seriously. 3.. Address my issue. 4. Be truthful why they can’t do certain test. 5. No interrupting . 6 . Don’t rush out. 1. Don’t be a donkeys behind & write false / lies that discriminate my character in my medical records / don’t superimposed someone else’s medical records with mine. 7. Don’t be arrogant / God blessed you , you’re not God. 8. Truly be compassionate. Most of this fantasy BC some Physicians wanted to help people / others are narcissistic & got into it for money & recognition. Others are just business man before they are Physicians. For me the last 2 personalities about Physicians seem to be all that’s left.

Thanks Ed for recognizing how important this topic is to the chronic pain community. Clearly the doctor/patient relationship can either be a God-send or a complete disaster depending on how we personally feel about the care we receive from them. For nearly 18 years of patient advocacy here in Washington DC area I’ve seen patients driven nearly to the brink of self-destruction by the unprofessional and callously bored behavior of their physicians. To counter that I have written to many state licensing boards to enact a fair review of doctors whose behavioral complaints increase with every practicing year. It’s a clear marker indicating that the doctor may be in trouble and his or her patients are needlessly suffering for it. This request may act as a focus point for the “model” you envision. Sadly not one state medical licensing board ever responded to my letters. Could you imagine state regulators refusing to review the liquor license of a bar that receives increasing complaints with each year? That would never happen yet doctors who literally hold the life of their clients in their hands are rarely if ever reviewed by state medical boards. Another idea would be to require all state licensed physicians to take mandated refresher courses in their field of practice in an effort to bring them up to date with the latest findings and discoveries along with changes to drug labeling with an emphasis on improving their patient relationships. I recommended that if doctors were made aware of these complaints, and what they contained, the problem may fix itself. On another note, as director of the End Depo-Now Campaign (EDNC), we continue to advocate against the use of any steroid for ESI’s due to numerous reports of severe adverse medical events including death and thus not approved by any health authority anywhere on the planet, have an unproven efficacy record, and were recently “Contraindicated” by Pfizer, the makers of Depo-Medrol®. Yet they’re $till performed.

E.S. Turner

My deep Chronic Pain was the immedate result of a careless driver & deep Back Injuries in 2002 & failed major Surgery 2003. In 3 months it will have been 18 years of this, made terribly worse by cervical spinal fusion (6 vertebra) & nerve damage from an accident caused me in 2008 & again in 2019.
I am horrified by the lack of care & big money game played by the few physicians who dare to treat pain, however slightly, in 2019.
I have gone from being an active & respected member of society, despite my injuries, to being looked down upon & physically
mostly inactive from lack of care, brought on by the U.S. Government’s “War on Opioids”.

I have gone from kind & compassionate care to being a Victim of an uncaring Society, especially in the past few years. Now I am used as a source of revenue by the only pain Doctor I could find & put thru the exact same questions monthly….it’s like an unreal game & very inhumane.

The Government is only interested in heir bottom line figures & until that changes, I hold out little hope for any real improvement in the entire scenario. My Standard of Living has sunken to depth I never considered possible.
Inhumanity. I don’t notice any improvement, rather more apathy.
I hope I’m wrong, but this is what I see & experience……..I welcome any suggestions to have a real impact on the Current Situation within my ability.
E. S. Turner

Cher

My Dr does seem bored at times, but he usually does try to help my pain, but he is very strict with opioids. He is my family Dr though. I have been to the pain clinics where I had to go monthly & felt it was unorganized & that they didn’t care much.

I was just diagnosed with spinal stenosis, bulging disk, very narrowing central canal & that encroachment thing. I am brand new to the back pain. My pain was & still is facial severe pain from grinding etc.. but this is definitely worse. I am getting ready to get steroid epidural shots in a couple weeks. So Dennis was hurt by a spinal shot? I’ll definitely do more research, but the pain is horrible, so I want the shot, but I don’t want a damaged spine, nerves or back. Dennis, could you let me know more about the lumbar shots? Or anyone? Thank you!

Lori

I can relate to doctors either being bored, not listening or just plain do not care. My grandaughter has been diagnosed by Dr. Google because when the doctors dont care, are over booked or whatever reason, its the only source of information you have. So far she has been diagnosed with 2 diseases that fall under NORD for rare diseases. Just because her symptoms did not fit in the” box ” of all correct syptoms does not mean she doesn’t have it . They just need to work harder to find the answers. My daughter has done all the research for my grandaughter’s illnesses and has pushed the doctors for the testing to prove it and she turns out to be right. She is so self-educated now I ask her before I call my PCP. I am 62 years old and the way people with rare or chronic problems are being basically ignored or the doctor throws a pill at it for the symptom, but not the cause. That is not how it was done when I was growing up and even when my daughters were growing up. One of my daughters had scarlet fever when she was around 10 years old. Her PCP was great. He told me he thought he had seen the symptom before, but he walked in and grabbed his medical book to look it up to be sure. And he was right. He just had only ever seen one case in his 25 years of practice. Those kind of doctors are few and far between. He LISTENED. and believed what I told him. His face wasn’t in his computer like today. I recently told my new PCP that I thought the medicine she prescribed was making my hands and ankles swell. She checked her little pocket mini pad and said it was not a symptom of the medicine. I asked my pharamacist for the insert that the company who makes the drug puts in every box. He gave it to me. Of course there was also the regular print out you get with your perscription. Sure enough under the “boxed insert ” there was the side effect of swelling of extremities. You have to be your own researcher of your doctors and drugs today.

Chris

Not only are pain management physicians bored with their chronic pain patients but they are pushing unnecessary invasive procedures that many of us have had a dozen times. These procedures are not just the routine cortisone injections but the more permanent implants such as pain pumps and neurostimulators. I keep telling my pain physicians that I can manage my activities of daily living with the 90 morphine equivilents bearly but I do not want a permanent implant. He gets frustrated, telling me over and over that the DEA does not approve.

Hayden

I am a patient at fairly close by facility. A spine specialist but, he treats all patients with whatever type pain generating issues they/we have. I like him, very much. I realize that I am a “routine” patient but he always takes an interest in how life is going.. I have been treated by this doctor for about 7 years now, the second of two pain management doctors over the last 25 years. He still offers various treatments for pain under his limited authority to give because of the CDC “guideline” of course. I get to choose “what” to try. Injections, stem cell treatment, etc. but, he knows with my 25 year history I have tried them all and the best treatment for me is an efficient, sufficient, dosage of the same medication prescribed for over 20 years without an increase. As a matter of fact I was receiving a larger dosage at the first facility than I did currently pre “guideline” shakedown. We have interests in common and I am very thankful for this particular physician. Of course he would place me back on the dosage that I was functioning well on for the last 20 years but, he can not. I fully understand why so I do not take the unreasonable lowering of dosage out on him. I simply collect my SS disability, stay home and do the best I can. I suppose I am very blessed to have found this physician.

Practitioners are “burnt out/bored.” Many are overwhelmed by what administrators force on them. They have “quotas” to meet and are forced to limit visits to just a few minutes. Electronic medical records do NOT help; the highly common routine of “cutting and pasting” old information into new visit records and allowing the use of “pre-formatted” answers makes it far too easy for practitioners to create chart notes that are technically fraudulent. But insurance companies expect that. They don’t really care to investigate the fact that most patients are NOT getting the physical examinations that chart notes say they got. Insurance companies are making billions from patients paying their premiums for care, yet practitioners get less from each visit due to increasing denials. Documentation and regulatory requirements keep increasing (think prior authorizations, meaningful use, meeting data points, etc.). The only way for clinics to make money is to run patients through like an assembly line. More patients seen in shorter visits is the only way for them to make money when reimbursement rates keep getting cut. Patients need to realize that to improve their health care they need to think about where they put their money. Practitioners are turning away from insurance companies to start their own independent practices that do NOT take insurance like mine. Then they can set their own hours, lengthen time spent with patients, order what tests they choose to, and so much more. When you look at the premiums patients spend along with their high deductibles, they could be paying into some of these no-insurance practices and getting MORE care for their money. Some of these are called Direct Primary Care while others are just called the old Fee for Service. DPC practices tend to charge monthly membership rates, while Fee for Service allows you to pay for each visit as they occur. Check it out now; Medicare changes will soon cause more providers to quit or be fired.