Rant

Rant

I don’t often rant, but I had a rant on Twitter yesterday. Let me explain and set up the scene for you.

Yesterday, was my monthly appointment with my pain doctor. There’s a couple of things I can expect right off the bat when I go see him. First, he will be late. Not just 15-20 minutes late, but a couple of hours late. Though I was his first appointment at 9am, he was not even in the building yet. Second, the dialogue rarely changes. What I mean by that is for the 3 years and plus or so months that I’ve been seeing him, he’s been focused on one part of my body. He hasn’t diverged from that despite my even telling him that there’s more to my pain than that specific part. I’ve also written it down for him, outline style. Third, is that while I don’t believe he is unkind and I do believe he wants to help people, he has that arrogant, fatherly, I-know-best, way about him that makes me hesitant to speak to him any more about my pain. Typically, we go through the dialogue and I get me re-fill for medicine and go on my way. Yesterday was different.

Liza Zoellick

After almost an hour and forty-five minutes or so, he came into the room, sat down with his lap top and began to go through the findings on my recent MRI report. Note here: I have had one other MRI report in the entire time frame I have been seeing him, but his explanation for why I needed the MRI and why he ordered it was because he needed to be able to show he has been looking for any changes in my spine to substantiate his reasons for giving me my medicine. Okay. That is fair and I had the MRI done. The findings were not much different than it was 3 years ago in terms of what is wrong with my spine, however, there was significant atrophy in my muscles and the spaces between discs. Again, this is not surprising for me because I have been mostly sedentary. I have been doing yoga, but it’s a more sedate yoga that is for stretching and relaxation rather than building core muscles or improving back muscles. I am in a lot of pain and anything more than that isn’t well tolerated, I’ve tried.

His behavior in both words and mannerisms after I told him I was doing some yoga was disbelief. It set my teeth to grate against each other and my 19-year-old was in the room with me and could feel the stir of my anger. He asked me next how do I feel when I don’t take my pain medicine? I truly felt like this was a trick question. One of the things you learn upon going to a pain management doctor is the absolute way in which you should take your medicine. You don’t divert from the way it is prescribed. You don’t take more and you don’t take less. I was silent while he tapped on the keys of his laptop until he turned to face me expecting an answer. I said: “I imagine I would be in much more pain than I am already, and I would probably get a lot less sleep that I already do.” He nodded and then told me next that I would need aggressive physical therapy, because in his opinion, this would make me feel 10x better. Also, he doesn’t think I need the cane. According to the MRI, there is no reason I should be using it. I said very readily that my reason for using it is not only because of my pain shooting down my leg, but because I have balance issue. I teeter when I walk and when I don’t use in my house, I often hit the walls in the hallway and corners of things. He gave me no possible reason for this and just moved on.

At this point the visit was concluded with the direction to get in touch with the physical therapy and he would see me in a month where he would see how the physical therapy going for me. I managed to escape the office without throwing a fit, because believe me, I was very close to an epic meltdown. When I got into the car, I lost it. All I could think of was how in the hell is physical therapy going to suddenly help me now, when it didn’t help me 3 years ago? How is this suddenly you’re a-ha moment, when I went through more investigatory injections than I have fingers, two spinal stimulator trials and a sacroiliac joint fusion? I went through 6 weeks of physical therapy, where they could not get me beyond water exercises and the spine doctor declared the sacroiliac joint fusion [SIJF] necessary and now this is the miracle cure, that will have me running, jumping and walking again?

No. I truly believe that this is his end-of-the-rope response to me. He’s exhausted all ideas, and I have noticed in previous visits that he seemed at a loss why nothing he tried worked for me. I get it. In all fairness, I understand how frustrating it would be to try and try with a patient, but keep coming around to the same result. But I also don’t feel that he’s been looking at the big picture. Instead of looking at my entire body, and the entire problem that includes all my diagnoses, he’s insisted on focusing only on the small area of my back. He’s beat this problem to death and because he can’t fix it, I am now a lost cause, and well, physical therapy can’t hurt, right? Wrong. The physical therapy I endured prior to my SIJF was excruciating. The therapist decided on water therapy because her lightest touch brought me to sobbing. While physical therapy costs money and at three times a week for 5 weeks, I know I can’t afford it, I’m positive I couldn’t endure it either. But if I come back and say I haven’t gone I am almost certain that I might have my pain medicine terminated. Talk about a rock and a hard place.

I want doctors to do something radical. I want them to look at the bigger picture and not see me as a part. Though the practice of specialties has brought more focused knowledge of a subject to patients, it’s also brought a disconnection. My rheumatologist, cardiologist, neurologist, gastroenterologist and pain management doctor don’t communicate with one another. Each of them sees me through this keyhole, only seeing a small part of what is wrong. They all prescribe their medications and here I am, still in pain and still not feeling well but managed. It’s become all about management. The management of a life in pain and I’m pretty damned tired of it.

Authored by: Liza Zoellick

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.

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Cindy R

Years ago, I got one tip from a book (Sick and Tired of being Sick and Tired, I think, by Paul J. Donoghue Ph.D. and Mary E. Siegel Ph.D.) If I have the right book, this one tip has helped my relationships with all my doctors. The authors stated that Doctors get into medicine because they want to help people. Patients with chronic illness and chronic pain frustrate them, because we don’t get better and we’re back again the next month, not better again.

What the authors suggested was giving the doctor some good news, or at least letting them know you appreciate their efforts, even if you’re not getting any better, or going through a rough patch. I started doing that, and it has changed everything about my interactions with my doctors. There have been months when my “good news” was something as small as, “I am continuing to walk out to my mailbox, 20 feet from the front door, daily, to get the mail”. I always thank them for continuing to help me live my life, relatively comfortable compared to the pain I had years ago.

I do understand your frustration with a doctor who doesn’t listen. I had a pain doctor once, who told me every month, “Cut your Valium in half so you can start tapering down”, even though I rarely needed to refill that med – it was used solely for severe muscle spasms, and as my general pain was controlled, I had fewer of those and needed to use it less. He ignored the reason I had it in my tool kit and the way I actually used it, and cautioned me to taper, every damned month. LOL!

Anthony Harding

Most pain doctors are idiots, I’m not trying to be mean it’s the truth. Some one that has never been in your shoes or go thru what you go thru will never know. But they act like they are Jesus an can say a few words and heal you.

BrendaJ J DeRita

I could have written your rant. ….PT, Epidurals, MRIs,etc….pain excruciating Docs should have to live with it ONE DAY then maybe they’ll get it. 13 months ago my back surgeon told me I’d be up and running. Yeah, right.

CF Brown

I have been prescribe pain meds for 15 years for on going pain. VA has decided to stop treatment. 8 week taper and done. [edit] Doctors are fearful of government and are being muscled by insurance companies. Many chronic pain patients including myself have become something similar to a virus something to avoid or get rid of. I am like many, opioid treatment worked great for me. I had not one problem in 15 years. I took them responsibly, no alcohol no other drugs, no party up just good relief from constant pain. I paid attention to what I was doing. I had absolutely no problems with the medication. So now it’s back to constant pain , unable to do much. Fight off depression from the pain and spend much more time in bed. I believe there is much more to this opioid crisis than what John Q. Public is being told. Most of the time if you follow the money trail the truth will be found. I don’t trust the numbers that were put out on death rate due to opioid use and since when is heroin the same as pharmaceuticals. Government is now threatening it’s own professionals. DEA are doing raids, seizing assets and even charging doctors with murder. Is this the United States of America? It’s certainly not the one I lived as a boy or even the one I went to war for in the past. How many people will die because doctors stopped successful opioid treatment. This should not be one size fits all approach. I don’t believe the opioid crisis is about saving lives, 50,000 + die every year in car crashes but we still buy over priced automobiles, is that a crisis? The real crisis in the US is government, it’s the most abused and neglected industry out there. Now it is polluted with big money to the point it adversely affects it own citizen’s yet enriches the elite . This industry is what governs our lives on a daily basis. We need to regain control of those that make the rules for we the people.

Notasheep

Jamie. Do you find you have Dercum flares? For some reason every 4-6 weeks I can’t even lift me arms because of the increased pain. Of course there is the always pain, but those flares leave me pacing, rocking and crying. Btw, the pain from arachnoiditis pokes it’s hand up to be recognized after the flare causes the incessant rocking\pacing.

Linda Olds

Liza, it sounds like your doctor is trying to find a way to get you off pain meds by suddenly finding a ‘cure’ for your pain. That would make him successful…I’m sure you would love to be able to get rid of your pain by doing some PT too.
But sometimes nothing works except pain meds. The doctors don’t like that, because they are being pushed around by politicians and are afraid of investigation.
Pain patients often end up being judged and treated with disrespect.

Judy Dunn

The doctors of today are in it for the money or the glory. If they can’t fix you
They failed so the pass you to someone else. They are all specialists at taking care of their own pockets. Doctors use to care, before they all became
Specialists. Now they are nothing more than cowards who fail to keep
Their Oaths to do no harm when it comes to their patients.

CPP have been on opioids for years with no problems, their doctors are well aware of that, but now they are being deprived of their medications and
Mistreated by our doctors and our government.

Their licenses should be revoked for failing to protect their patients.

Lizard, girl do I feel bad for you. I have a good doc. But…I’ve been saying for yrs.( Im 14yrs. With pain doc). He should be connecting to my Shrink & GP. PT is gonna hurt you!!! What an idiot he is. Im a nurse. If you can’t walk, how are you going to PT. And does this sitting suck?? I want to get out there.I still get my meds cause he knows all the places I hurt. X-ray this week of Left lumbar. Already had 3 “fixed” I honestly feel for you. With a 19 yr.old does he really think you want to waste time at PT. I went twice like you, just to say …see I told you wouldn’t help. Killed my neck.Left first day. Never went back. I’ll say some prayers as I pray for me LOL. Feel better, Liza. Better days are coming .😀

Last week had appt. w/ Ortho. Dr. Sent by primary , due to increasing hip pain when sleeping on my side at nite- So he walks in door after I waited half hour, says “ oh your a frequent flyer here” Well , NO. Was here last fall for shot in knee that didn’t have f…d up TNR w/ horrible pain since 2014. For which I avoid Ortho completely. I have gone to Pain, Neurology, primary, consult Nuerosurgury(2 lumbar spine severe herniated disc surgery,) Physical Med. ( Spinal Stenosis consult) Rhuematology years ago diagnosed fibro- said “now go away- “ Outpatient surgery x2 a year for radiofrequency neurotomy, Psychiatry for meds (5 x year therapy for severe depression) — NO . Does this mean I am train wreck of illness u don’t want see in your office? Ok I understand- I used to work in hospitals, in medicine! I used to make jokes about people like me! ——-Great I don’t have bad hip arthritis! Don’t be condescending- Dr. That’s what I needed to know – I’m HAPPY! It’s only more of the stenosis! Please don’t let the door hit u when u RUN away – So glad only more of damn spinal stenosis, now need u send message to primary and PAIN Dr. , Hmmmm. PLEASE, PLEASE, PLEASE. [edit].( As I am polite, swallowing all anger)

Pat

Doctors think they are gods. Most do not have our back issues.
Empathy is hard to come by. Keep up the fight.

Pat

I feel your pain as I also have back pain. Degenerative disk disease they say. Spine is crumbling slowly as I say. Spinal fusion with decompression of nerve in 2014. Another MRI lpast month since left leg pain from radiculopathy for months. Neurosurgeon gave me 2 surgical options. Same surgery needed above previous fusion. Get the shots to the nerve root. Also go to PT, then follow up in month.
It took me 20 yrs in pain to decide on first surgery. I want this done now!

Jeffrey Sampson

Liza,
I have been down this same road for about 30 years actually when I started needing help, Pain management doctors were unheard of at least in my world. I sadly do have some advantages if anyone actually wants to label them as such (not me) they have all but killed me let me explain. I had childhood psoriasis and psoriatic arthritis and epilepsy being I have this history and have been kicked out of physical therapy their words “we are” doing more harm than good.
I had lower lumbar fusion surgery that has destroyed my health and happiness while increasing my pain levels to suicidal highs. I have also developed neuropathy in both feet and hands from the knee down and elbow down the pain is absolutely unbelievable!
I do still get steroid injection’s in my lower back since I have also developed caudia equina and my right shoulder had to be rebuilt several years ago just for the arthritis to eat it right back out. So I understand your inability to take the pain of doing physical therapy.
I so far have been fortunate and never have been lowered on pain meds but need an increase but they have refused to increase pain meds saying they cannot by law so I do not fight what I can’t win recently my doctor has started me on nortriptilene and has been a great medication for me that being said my doctor told me upfront it only helps some people luckily I am one of those people. Also my pain management doctor thought I have bursitis where my femoral bone concepts to the hip joint and gave me a steroid injection in each joint it was a major relief. Ask your pain management doctor if you may bursitis it’s extremely painful and injection’s have made a major difference for me!
Anyway I could spend hours and hours writing about my life and pain but no reason to do so.

Lynn Marie

That doctor sounds not only like an idiot but someone who really doesn’t care and says anything
But when I find us that I can manage my own pain better than the doctors because if I would have started to take the dose they gave me 10 years ago I would’ve been ejected by now.
Distractions help, having a friend over, maybe
reading. I’m able to drive so that’s a big help, but living alone sucks

Anonymous

Keep ranting…no one is helping!!!!!!!!!!!!!

Marilyn Pittman

liza, wonderfully written! It is exactly what my sister has said to me about her pain and other doctors. She has become a shut-in, bedridden and basically has given up on having a livable, somewhat normal life. I am going to call her and read what you have written. Bless you and truly hope answers are found which, in my opinion is NOT withdrawal of pain meds as this whole “opioid crisis” bears down on all patients as well as doctors! Again thank you for being honest about your attitude of your doctor….my sister has the same ‘kind’ of doctor who is not even looking at her pain.

Cindy

Good rant! We all know the health system is broken. It’s really too bad we can’t talk to our Doctors, I’m afraid to talk to mine too.

Karen

I go to the VA for my Dr. Talking about red tape. Oh gosh. It is awful. Everyone who has replied has what I go through on a daily basis. I have chronic diarhrea due to all the meds I am on and when I go to the ER I am told “I see you have a script for loperamide. You can take up to 8 pills a day. Continue taking them.” Uh the box states it is not for long term (3years) use! Everything is paid for but sometimes I feel like they are trying to kill me. Other vets feel the same way too. I can’t take maids because of pill esophagitis but the pain is so bad I bought some BC powder in case the (sugar pills) they give don’t work. I am ready to try medical marijuana but I know I have to pay for it as the VA won’t even if it is legal in Florida.

Signe Topai

Lisa , I feel your frustration! My doctor won’t increase my pain meds by six pills! I flare every month at least once. If I want to due something, like visit my daughter, the extra movement requires me to take pain meds every 8 hours. My doctor’s solution…antidepressants! I am a walking angry, depressed, in pain women. I have been on five different antidepressants and feel worse. It’s bad enough to be in pain but to now feel crazy, depressed and helpless too is just SO WRONG! There is no communication between doctor ,shrink or Rheumatology. I have never felt suicidal before but now I constantly have to watch my thoughts and words. I am so done with all three Kaiser Permanente doctors!

Rebecca Hollingsworth

A little off topic here but does anyone know when the pain patient survey/stories will be read? I hope all of our efforts to be recognized and treated have not been in vain. Please keep us updated. Stay strong everyone. We are at war with the powers that be…

Jamie

Thank you ! Your story hits so close to home for me because it’s EXACTLY what I’ve gone and still continue to go through . I have endometriosis , Dercums disease, Lymphedema, several levels of spinal collapse, herniated disks , bulging disks, two very badly slipped disks, serve kyphosis on top of a myriad of other things like stenosis and narrowing of the spinal Canal , nerve root abutment at different levels . I could go on. I’m 37 years old and have been coping with at least one of these disease since I was 11 years old . I absolutely loathe when my doctors won’t look at the big picture for me !!!!!!!!!!!!

Dear Liza, everyone who ever been to P.M.C gets this treatment of (just the spine area.) Every doctor is licensed in their own title of care & will not treat beyond their license of care. But you as a patient can bring w/ u copies of any reports or mri from other doctors & share them w/ other doctors. Most docs are mostly interested in mri or blood work that confirm your disabilities/ diseases. Beware P.M.C not keen on sharing their reports & can get u dismissed, this happen to me. I wanted to get better but like u can not tolerate Chiropractic or certain stretches in physical therapy. Some times docs may not keep them. Some docs think they have a cure for everything, but when cures fail, they have to blame the patient cause their egos or loss of kn what to do next, or fear of DEA. Fear of DEA & insurance companies push docs to put patients thru this b.s. Docs have to prove they r doing their best to help patient even when it can cause more pain for patient & cost. Ask for modification if thetapy causes pain. Its not the Docs body or purse but if u dont go thru it , I am afraid u will lose ur pain meds. If therapy @ his clinic he just making more money & therefore you’re just more income generator. Great article, wish u the best. We all r w/ u & been there.

F.S.T.

Liza, you have surely chronicled (so well I gritted my own teeth when you wrote how you felt while your doctor talked AT you, not to you [emphasis mine]) what a great many of us chronic pain patients feel when we do our own due monthly diligence, make the required monthly visit to the guillotine dungeon!

At least my doctor is on time, but I have the same feelings as you. He wants to concentrate on my lumbar spine, but the problems there (DDD and DJD) have improved greatly since my maintenance (get it, doc? They’re for MAINTAINing the status quo) opioids were: 1 was cut out and the other decreased; thereby guaranteeing me a life of 20 hours a day in bed. So, mission accomplished for the lumbar spine, doc! When you d/c’d my lifeline that made it possible for me to be up and outside and living life, you inadvertently fixed the back, for sure.

When I try to steer the conversation to the Fibromyalgia and chronic Lymes that causes generalized pain and other horrors, he snaps that he doesn’t prescribe opioids for that. Wait, what? Okay, so my brilliant former doctor, who was affiliated with a major teaching hospital and wrote four books on chronic pain, and who ordered the right combination of the right drugs at the right times in the right amounts and just so happened to give me my life back back in 2009-2013, was wrong?

So I’m coming into this monthly pain clinic after dreading the visit for three weeks, so much so that my blood pressure is always at least 150/110, having to pee in a cup and watch while you count my remaining tablets, making me feel like a 6-year-old (I’m 63), just so you can ignore my BIGGER problems and tell me you don’t give the medicine for my documented problems??

He has been pushing hard for me to have a nerve block right there in his office and I’m saying no way will he ever touch me. I’ve had three in a hospital setting by a competent Anesthesiologist already. I found out that my pain clinic makes good money for procedures!

I feel now that I go to the doctor and pay to make myself worse.Tapering me down is just pure torture.They have put out the last couple of days from the FDA that you can’t bring someone down of opiates to fast that it is dangerous.Seems we all talk the same language and go through the same feelings.We just have to keep fighting back and not allow big money to take our lives away and career politicians to not be able to profit anymore.Doctors should be standing together.

Amy Novratil

Omg! While reading your sad and frustrating story I thought you had accessed my life diary! With some very small changes your story is my story. Thank you for having the kahunas to say it out loud!

Barbara Ann Sheridan

There a some great articles written by doctors on why they are afraid of, uncomfortable with and try to avoid chronic pain paitents….and yes this includes Pain Management Doctors!! The short answer, Ego. Most Doctors have huge egos and that’s usually GOOD I mean who wants a timid surgeon? Or a wishy washy GP? However for chronic pain paitents who, for the most part, never get better ( ummm chronic anyone?) And who also consider living life at a pain level of 4-5 as a good day we are essentially a no win situation, a draw at best but never a win by any means. For a subset of the population for whom winning….being the best….excelling….is completely hard wired into their dna well we scare the bejesus outta them. Why play a game you can’t win? They don’t seem to understand that by treating us with respect and allowing us to maintain some semblance of a normal life by keeping our pain to a minimum whenever possible, to us…They are AMAZING doctors, miracle workers even. A win…heck a day that I can get out of bed, fix my hair…maybe run an errand or two, that is a huge win! And I am grateful, truly blessed to have those days a few times a month. But all many doctors see is the bottom line that they cant “fix” us…so they don’t even try. Add to this the legal ramifications and ridiculous prescribing hoops they need to jump through…well I’m not saying it’s right, and I’m not saying it doesn’t violate the Hippocratic Oath even ….Im just saying that could be part of the bigger reason we chronic pain sufferers get shafted from every angle almost every time by medical professionals who we thought would help us.

James McCay

Lisa, I hate to tell you this, but you’re doctor has fully TURNED TO THE DARK SIDE! He no longer cares about you (if he once did) and the only decisions he making now is out of paranoia and fear FOR HIMSELF ONLY!
Sadly, you can’t just go to another doctor because that option NO LONGER EXISTS when opioids are involved!

I’m far worse than you are (no offense) and my Pain Doctor of 7-years GAVE UP over a year ago and has been trying to force himself to cut ALL his patient’s off of opioids for 9-months. He finally did in Jan. 2019 w/A LIE, but was met with such anger from nearly all his patients (as he specializes in long-term Chronic Intractable Pain patients) that he decided to LOWER everyone’s opioids by 10-30% once, thinking maybe that will get the DEA off his back & stop threatening him.

So I did what I had to do and he hasn’t lowered his patient’s opioid anymore! Yet most of us are still suffering more daily because we are ALL on lower opioids than we’ve been on from 5-40-years+!

I had my doctor read National Pain Report board posts and how there are Pain Management Doctors FIGHTING THE CDC in court, or he would have continued weaning ALL his patients OFF OF OPIOIDS.
Perhaps others who are on this board need to do the same thing, because the ONLY THING these doctors are afraid of is getting in trouble from the CDC from their GROSS NEGLIGENT “studies on opioids” using regular family physicians as their “opioid experts”. STUPID CDC! Even the FDA is on OUR SIDE!

So nearly ALL of our LAZY Pain Doctors (who we mostly thought were the best doctors we’d ever seen) just went right along with these illegitimate opioid “Guidelines” (not rules or laws) sent to them WAY TOO OFTEN by the DEA for almost 2-years now & reacted way too drastically just to make themselves “feel more comfortable”.
At this point we have practically no option but to wait for truly kind Pain Management doctors to fight any CDC decisions regarding opioids in our individual states.

Veronica M Clark

I have several pain issues that cannot be ‘fixed’. Did the physical therapy, which caused another pain issue. Many injections, many different medications that we found out I’m allergic to. Last pain clinic did something very wrong, and pain was shooting down the back of both legs (never had that before, nor since). When I called them, they simply said deal with it. I’ve been without any pain meds for 2 years now, when I was on them over 20 years prior. I don’t know what to do any more….I feel your pain, Liza. But, at least you haven’t been cut off entirely yet…and I pray you never do.

Paul Bartolini

I was cut off my meds because I refused to go to physical therapy because it makes my pain worse. The doctor refused to treat me any more and tried to reduce my meds by 50% in one month and then off completely the next. I left his office so pissed off. Why don’t these chicken shit doctors listen to their patients? Why are they so stupid when it comes to pain meds since the false guidelines put out by the CDC? I’ve been forced to return to my old doctor a one way drive of 8 hours away to get a reduced amount of pain meds. I’m seriously thinking of turning to street drugs rather than suffer at the hands of a medical community that simply doesn’t care about its patients any more. I’m sick of being treated like a drug seeker/criminal when my pain was caused by a surgery gone wrong that has put me into disability, ruined my career and life and now any quality of life the pain meds gave me is being taken away by a false narrative put forth by our government while people are dying in droves because of heroin and fentanyl. We must stand and fight the lack of care being given to chronic pain patients. I’m fed up with being treated like this. My next appointment I am asking my doctor to increase my dosage to at least 80% of what it was before this insanity started so I can get back some of my life. I refuse to be a victim.

Dar

I can also relate to your experiences, and frustration relating to severe chronic pain, and what has happened to our medical community. We know we have civil rights, one being we have a right not to suffer in pain. We also know that doctors take an oath to treat and heal patients to the best of their ability. Why are we allowing our constitutional rights to be violated? Why do doctors bother to go to medical school, spending so much time and money, with intents of diagnosing, treating, and healing pain, when they are not being ‘allowed’ to practice their profession? I have been physically disabled for 30 years. I have too many life-altering conditions to list, and I went from practicing holistic methods, when I was first diagnosed, to realize I had to begin pain management medications in order to function. My previous doctor retired, and though he did give me the name of his replacement doctor, and had explained my case to her, I never did see her when I made an appt. after being hospitalized after seizures, and explained my previous doctors explanation. I waited for over 2 hours in the waiting room, when a nurse came out and explained there was not a new doctor filling in, and another doctor would be seeing me. I was shocked to see there were about ten patients waiting, and we were all were gathered to the doctors office. It has been a nightmare ever since. My healthhas steadily declined, getting worst over time, and my medication has been reduced from 120 mg, to 10 miligrams. I hardly leave the house. It is time to fight for ourcival rights, and the guilty parties ( those who have caused and continue this injustice) to pay for what they have done to pain patients.

Steve Abbey

I am pretty damed tired of it too! Why can’t help the people that have no problem with addiction? They can look at our records and see we have no problem with addiction as some might have! There is a difference between physical and psychological addiction why can’t the cdc or someone fix this problem? It’s accuately pretty simple.. What they need to do with new patients is watch them closely and keep them at a comfortable level without hurting them to the point beyond where they are in danger. I think that is what the crisis was supposed to do to begin with. Not take the meds away from established pain patients..

Norm

I wonder sometimes what goes thru a pain doctors mind. At least what goes thru my doctors mind. According to him every pain I have is spine related. Pain in my ankle? It’s spine related. Pain in my knee? Spine related. Never mind that the knee was so bad it was replaced, and so was the ankle. I have real bad spine problems(the worst herniation my doctor has ever seen and still be somewhat functional) and it kills my back badly. But I do not think it is what is the cause of the ankle and knee pains. I have just learned to nod and agree and not rock the boat. I think everyone here knows why I bring my cane with me whether I am having a good day or not. The very first time I did not bring my cane, my doctors mind went straight to a comment that I must be getting better. Never mind that I waited until I was leaving before I took any meds that morning. So I was up early and in discomfort for a while before I left. Because while I’m out I like to have as little pain as possible. And the drive is a little far.( in the next county) I can handle pain a little easier while I am home. I need more meds to get all the way thru the day on the same level. But I dare not ask for more. I don’t dare rock the boat. I’ve been on the same amount for 5+ years. If I lose my meds I am dead. I will not survive. The pain is just too bad and too constant with out them. So I guess I will continue with the epidurals and the radio frequency ablation every few months if it keeps my doctor happy so I can get the meds that barley allow me to function with a little bit of normality.

Also can check out Neuromuscular
Therapy

This got left out:
online – Myofascial Therapy. org

Suggestion from a trigger point myotherapist – me for 35 years now –
.
. C + A Davies: “Trigger Point Therapy Workbook”, 3rd Ed.;
. B.Prudden: “Myotherapy”
“After 50 Fitness Guide”

Robin Birdfeather, BA,MTPT,CFS

This could be me. I have tried everything, yet my pain clinic wants to push more injections, which is where they make thier money. And yes, they dont care if my other joints, besides my back, hurt. They dont care the rest of my body and my head hurts. sadIt’s sad. I found much connection with your rant, as I feel unheard, uncared about and just a number to my drs as well.

KATHLEEN M KAISER

I had the other problem with my PM PA. She refused me a spinal cord stimulator trial and a pain pump because she kept insisting that with my all over pain neither of those were good choices. The thing is, my worst pain was in my lower back and my hands. I’d be happy with any relief from either or both.

Alan Edwards

I experience the same trick questions at appointments (which are concocted beforehand as well as the common rude question “well what do you want me to do about it?”).

Doctor, pharmacist, and medical professional behavior towards patients has become more uncaring and incompetent. Yes, daily or a 10 fold increase in PT will make highly paid PTs even richer, but 51 years of weight training and walking and physical therapy did nothing to improve my cerebral palsy or current conditions. Did you know some physical therapists have a no touch policy? Massage therapy is rarely being practiced which worked well for me if done often.

After a long experience with Doctors, Physical Therapists, Hospitals and Pharmacists, I learned that despite their education, if caught in your own house, their authority and knowledge become weak. They usually have no rude remark prepared or trick questions. But a medical database and outline is ready in my head. A pharmacist and I had a benzodiazepine discussion miles from a pharmacy. His reasoning fell apart. And so did evidence of his eight year college degree.

We should not have to do battle as pain patients with every medical professional out there. The cruelty and mind games should not exist. Compassion would improve a patient’s life immensely.

If one catches an abusive medical professional out of water, you can become the one in charge. Study your medical conditions.

Roonie

This is so spot on. I, too, am tired of it. Thanks for expressing my thoughts so well.

Loretta Holscher

Patronizing is a form of attack.

Carrie Witte

I have OA in my major joints requiring replacement. I have 2 hip replacements, a second cervical spine fusion and now recovering from a left knee replacement. Pain management has been a nightmare. They preach aggressive physical therapy without proper pain management making the experience worse than it should be. Acute surgical pain is also affected by the “opioid crisis “, and if you are also a chronic pain patient you are totally screwed. We need a voice in DC not only for chronic pain patients but also for the providers who are caught up in this witchhunt. Doctors now have very strict guidelines for prescribing opiod medications and most have their hands tied. Doctor s and nurses need to stand up for patient rights and get the politicians out of health care.

Annamarie

I agree with you 100%!

Cindy

To LilyPond 59 who posted a few hours ago —

Please start keeping a list of all the meds you try, and the side effects. That will help you in the future to avoid situations like this. I finally learned my lesson and now do this.

And, liquid versions of meds may be the answer. Then you can work up to the desired dose extremely slowly and gradually. I found this out thanks to a very persistent doctor.

I am the queen of super rare side effects and couldn’t tolerate any type of anti-depressant/anti-anxiety. Plus I didnt’ think I needed it, but I really did — the pain and loss of so much of my life of course had an emotional effect even if I wasn’t then willing to recognize it.

I am so glad my then-PCP insisted and persisted.

She wanted me on 10 mg of Lexapro (escitalopram) which she thought I had a better chance with than other drugs for the same problems.

When I had horrid side effects even at low doses, she prescribed it to me in liquid form. Very slowly and very gradually, I worked up to the 10 mg and then could take pills.

If she hadn’t persisted and prescribed the liquid, I can’t imagine where I’d be.

DB Stewart

I’m afraid to ask, why is it that we have to go to PM monthly? I see my cardiologist every 9 most and I have a bad heart. Why are we so lucky?

There are Town Hall meetings occurring NOW & meetings the C-50 is setting up nationwide with policy makers. PLEASE join your state pain advocacy group & work to resolve this issue. We ARE making progress-our new Director, Tamera Stewart, who I call the Oklahoma Bill Slayer, has gotten ‘bad bills’ killed & good ones written & passed all in the last couple months, with the help of others, of course . Groups of pain patients need to meet with policy makers so they can see the multiple/varied conditions we have. Please get your DNA medication tests done, cross out personal info & send them to us – Tamera took ours to DC (we are both ultra rapid hyper metabolizers – what would take down an elephant would be a Bufferin to us and my son) it made a tremendous impact as policy makers/staffers said ‘… HOW can we make policy when everyone is SO different’? Bingo. #1MMEnot4ME – We have info packets & will help train you, if needed, & even have medical personnel to call into meetings. If you want to just share your story, you don’t need to memorize all the facts figures. If you are home bound you can call in. If you can attend a Town Hall meeting & FB live it – wonderful! After these meetings, they go back to DC & start passing health care laws. Personally, I believe we need an emergency bill through Congress, instead of chipping away at 50 state legislatures, medical boards, etc. However, we need to keep it up on every aspect to change the false narrative that actually started in WA state over a decade ago with the University of WA, the Bree Collaborative, AMDG gas-lighting our state legislature with junk ‘science’ which lead to the CDC guidelines. When commenting on articles/news please ask for an investigative journalist. Please join https://www.facebook.com/C50Advocacy/

Liza:
I’m so sorry you’re going thru this. It’s criminal the way that these arrogant, ignorant doctors won’t listen to us & won’t simply deal with the reality –our reality. I sometimes think that (with the worst offenders) their galactic level of arrogance means that at some point, when they can’t pull a rabbit out of a hat & CURE us, they get angry at us –as if it’s somehow our fault, our failing that their brilliance hasn’t magically corrected the problem. I’m sure if you asked one of these schmoes directly, they’d never admit that they resent us for making them feel like dimwits, but that’s my conviction & I’m sticking to it. I’ve had an AWFUL lot to do with physicians in the last 55 years (I was also sick all the time as a child) plus I had to train a lot of brand-new MDs in lab techniques as well as work with them, & have seen their arrogance from many angles. In some of them it is utterly infinite. And petty.

On the other end of the spectrum, I had a wonderful neurologist in NC for many years who strained his considerable brains & compassion to try & find something to make my migraines improve. It never happened, but he never gave me to think for an instant that it was my fault. I actually felt very bad for him, that I’d let him down, but that was purely generated from me, not him. He retired, and medicine lost one of its best.

I don’t know if you seen the EDS & Chronic Pain blog, but Zyp Czyk has a good piece on patients who never get better, as well as excellent posts about pretty much everything to do with pain, & tons of incredibly valuable info; https://edsinfo.wordpress.com/2019/04/10/what-about-pain-patients-who-dont-get-better/

Cindy

I’ve had a bunch of other treatments — drug and non-drug, — and nothing helps except for opioids. And even with those, I’ve had to be on disability.

My PM does know this and would never try the baloney that the writer described.

Yes, the whole body does matter.

Due to my pain, I’ve been extremely sedentary for the last decade. I know that’s really bad news for my bone health, heart health, muscles, etc, but haven’t been able to tolerate much activity.

Now due to my forced taper, I’m even more sedentary. Terrified to even try to go for a walk — b/c that would require an extra pill.

I’ve just been told by my PCP that I”m at increased risk for a cardiovascular event in the next 10 years. I’m also sure that my upcoming bone density scan will be full blow osteoporosis instead of osteopenia — based on my last scan 2 years ago and the doctor’s warning at that time.

My pain manager was very reluctant to impose my forced taper, which, aside from the physical problems has caused me incredible stress — another risk factor.

I plan to discuss my new whole body info with him next month and hope to get him to increase my dose at least by a few pills due to this info.

And, I’ve given his NP who I see most of the time, printouts from this NPR and the US Pain Foundation about the Task Force etc. Hopefully that info will help my case.

When he imposed my forced taper, he told me that “Medicare” imposed the 90MME rule. He really doesn’t understand the gov’t details, which I now do, due to tons of research.

Heather

At first I disagreed, because we can all use some level of physical therapy, but I strongly think yoga counts! We all have to do what we can tolerate and these doctors need to get educated on just how beneficial yoga can be.

I use to have a PCP that cared and oversaw my numerous prescriptions while I saw these careless specialists. He retired because of the Guidelines. This is what the government has done to us structurally. It’s not just direct prohibition or regulation. They have forced us into a confusing and unhealthy situation.

Thomas Wayne Kidd

Remind your doctors that they are violating your rights under the Americans with Disability Act. Let them know that you and other chronic pain sufferers are being mistreated. I will remind them at every appointment.

Cindy

Stories like this make me so grateful for my current pain manager. No long waits. Great NP’s who I see most of the time and who have more time than he does. He’s generally really rushed. But, he does listen when I have something of concern.

My advice is to keep looking for a new pain manager and don’t stop until you find one.

If one isn’t available now, then keep looking. Things will change eventually, esp now with the growing pushback against the CDC Guidelines.

Long story short — My last PM was horrid including her office admin which was a nightmare. Not just long, long waits, but lost appointments and more. I’d sit and watch so many other patients have the same problems as I had.

Like showing up for your scheduled appt when you only have a few days worth of pills left, and being told you don’t have an appt — b/c they lost it — and being told to come back in a few weeks.

Her discharging me due to a tox screen which her office said showed high alcohol — even though I”d consumed zero alcohol — worked out great, b/c I found my current doctor.

Her horrid behavior in not allowing me to defend myself, and not considering the possibility of lab error — or error by her horrid office admin — caused me enormous stress — terrified I wouldn’t find another doctor to take me and that my disability insurance would cut me off. But none of that happened and I am with a much better doctor now.

Thomas Wayne Kidd

I appreciate your commentary on this. My appointment is coming up the 24th. of this month. I very concerned that I could have my medicine reduced more or taken off completely. After 30+ years on Methadone I fear I cannot survive another one these insane attempts. I feel for you and understand what you are going through. My prayers are with you. I am feeling as if we are being slowly killed and they just don’t give a damn. But one thing I am assured of is judgment is soon coming to these doctors because of their mistreatment of the sick and dying. “Behold, the righteous shall be recompensed in the earth, much more the wicked and sinner.” (Proverbs 11:31). What they are doing to us is both wicked and a gross sin. God bless you and my He bring you to someone who actually cares. Thomas Kidd, your fellow sufferer.