It’s Time for Doctors and Patients to Stand Together

It’s Time for Doctors and Patients to Stand Together

By Jay Joshi, M.D.

drjoshi

Jay Joshi, M.D.

(Dr. Joshi is a nationally recognized pain physician who will attend the CRPS Conference in Chicago on Saturday. What follows is his commentary about the conference specifically and the environment of chronic pain treatment generally) 

With this recent election cycle, two topics have become very clear.  We have issues in America with healthcare and discrimination.  Access to healthcare (especially good healthcare) has diminished, premiums have gone up, deductibles have gone up, coverage has gone down, and the total cost of healthcare continues to rise.  Discrimination, based on race, color, gender, disability, and more continues to be a problem.  In some ways, it is worse than it was 10 years ago.

What we are seeing in our broader society seems to be amplified (much like the pain in CRPS) within the pain patient population.  We are seeing access to good pain physicians diminishing, premiums for pain patients rising, deductibles rising, coverage for pain procedures diminishing, reimbursements diminishing (to the point where it costs more to do the procedure than we are getting reimbursed in some cases).

We are also seeing bigotry and discrimination increasing within the pain patient population.  It seems that the general stereotype is that anyone who is on an opiate is a drug addict.  Somehow pain MANAGEMENT is worthless if there isn’t a cure.  While we are always working toward a “cure”, we are not there yet.  And management is a lot better than the alternative, which is failure.  Failure leads suicide, which I’ve become increasingly convinced some people who hate pain patients welcome with open arms.  Patients with CPRS and central sensitization are doubly discriminated against because most people in our society (especially physicians) have little to no understanding or compassion toward the disease or the patient.  Thus, their views and practice philosophies are based on stereotypes and opinions, not science.  This leads to bigotry and discrimination.  I’ve personally been a victim of both simply because I properly take care of and advocate for pain patients.  In fact, this happened again to me this month.

Saturday’s conference may be the pivotal point in the management of CRPS and central sensitization.  We all know ketamine infusions are helpful.  The experts know the science behind it and it is not based on opinion or stereotype.  We need to come together and fight these disgusting people who treat pain patients and legitimate pain physicians like some contagious disease that needs to be eradicated from the planet.  There is a place for humanity in our society and a place to treat our fellow mankind with dignity and respect.  There is no place for racists and bigots in our society or ignorant physicians and non-physicians who slander, defame, and threaten patients and their providers.  So let’s stand united to defeat this insurgency of hate.

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Authored by: Jay Joshi, M.D.

There are 57 comments for this article
  1. Shirley Hinton at 6:00 pm

    Is there any one I can talk to please ..I am in a not good situtaion and need help ..please ..can somen eplease write me or give me the name of someone to help me know what to do .Ive been on medication for years and I was dismissed because I was “rude to staff ” ..oh yes .. i havebeen yreated like a addict and Iam tired of it ..they lie , they treat you terribly but you made tomsign their stupid contracts and accept absue ..pee in cups when you naver had a bad result or abused drugs He dismissed me knowing I have a bad problem now with more pain because of what is a possible breast implant rupture very stinging painful condition hoping for MRI soon ..ultra sound saw somethimg suspicious . THis doc is a monster after he couldnt give me another possible shot told me he could do nothing more .. then when I didnt stop going he started being ridiculous in his behaviours . They weote my perscription for 31 days then said I went sooner by one day ..i told him it was his mistake .. then hen I was made to wait for a long time and blood pressure went up to 162 ..when normal is 120 I was not happy ..told them i hasnt had pain medicine because I had to drive This was with possible ruptured implant we think ..which was painful to drive Although I still have neck pain and definately have Fibromyalgia ..I am debased and humiliated and need help ..I have adjusted to lack of medication on my own but am in pain ,, My poor husband who has had cancer and heart attacks is till working for insurance .. we are responsible good people ai am 67 ..husband almost 70 .. this is going to kill us .. the mere stress is unbearable feeling ..feel so forsaken and hurt by treatment . We do all they tell us and they just het worse and worse ..Its horrible .

  2. Lance at 12:40 pm

    COP TO DISABILITY TO JUNKIE… Well that’s how I’ve been treated lately for simply being a pain patient diagnosed w 5 herniated bulging cervical and lumbar discs. I was employed for over 12yrs in a county law enforcement job. On 2nd shift we picked up lotsa new rookies when they mistakenly removed the cuffs from a schitzo affective very violent individual high on PCP aka angel dust. In short the ensuing struggle to re handcuff this dude resulted in me flying backwards down 30 steps fracturing all ribs damaging discs in my neck lower lumbar area.. Surgeries and referrals to pain mgt and being told ID be in lifelong pain resulted in a 2yr desk job and disability. I’ve had great doctors but every 6mos to a year in Cincinnati Ohio the pain mgt docs are harassed poked at by DEA agents made to feel like dope dealers and they leave the pain mgt discipline. I had the same doctor for years now I’m lucky if I have one for 6mos! suddenly ea doctor focuses not on pain or injuries but more on just cutting meds regardless of pain levels or preferences tolerance bodyweight or years of med use. In the past doctors would work w me to find a good working med w out side effects to simply keep me functioning active etc. I was receiving 20mgs roxycodone 5x day roughly 100mgs after 10yrs of pain mgt this cocktail seemed to work well. BUT one day I walked into doc appt and the doc says we have to cut everyone’s meds so I asked why would every patient in this practice be subjected to having meds just cut down irregardless of medical problems? So as it turns out all the doctors discretion disappears and his or her decisions are based on fear of sanction via the state. The doctors now pull out a chart that displays the governments ceiling of 80mgs a day!!! Wow… Amazing that governor John kasich who ran against Trump dogged Donald Trump then petered out in the race had a relative e a drug problem and he has waged war on pain doctors and patients. If u need pain help it would be best to avoid the state of Ohio as we have the label of being the toughest state in the Union to obtain help and or meds for pain. My doc who had to terminate all patients in 7days advised all patients to go out of state anywhere but Ohio as the government now controls pain mgt with mandated ceilings on opiate meds daily ie. 80mgs. So the cancer patient the car crash trauma patient the former Marine combat injured patients all fall under same umbrella and that is here is the state pain chart and that’s it. I myself went from 5 20mg tabs day to 3 10mgs day and I asked where did u arrive at this figure?/well doc said uh well that’s what we write everybody.. So several surgeries 17 epidural injection 5 runs at physical therapy chiropractic care outta pocket dmx treatments w traction I’ve done it all but I’m subject to useless repeated same treatment modalities none of which offer therapeutic value why? Not bcuz it helps me but it creates paperwork to defend doctors against threats fr DEA as to why they aren’t using treatment modalities other than pain meds. The costs of the useless treatments and the quadruple booked doctor offices due to few pain docs still in the biz create nothing but frustration. I went thru more useless epidurals and was told that my pain levels should have decreased my meds lowered drastically. I was given a sheet of paper to document the results ie. Benefits of the epidurals which I indicated zero benefit but after taking a peek at my docs computer screen I noticed he falsified the benefits of the injections stating I experienced 60 percent relief which I assume he did this to justify cutting my meds. I was shocked to see the results falsified but what am I to do I’m not privvy to his internal records but I assume the state is and this is why they did it. I have to take monthly urine screens again more wasteful billing to insurance companies when before state and federal opiate scrutiny urine screens were random. The monthly screens are again a defense to the govt when powers that be come knocking the clinic they then say see we test every visit we have pill counts we fingerprint and mugshots our patients.. My pain clinic is more intrusive than a state parole officer I drop urines more than a parolee or probationer on heroin. On ea doctor visit I am interrogated by a dea rep who mentions pharmaceutical diversion… Do I sell my meds? No… Do I give meds to family or friends.. No.. The interrogation lasts 20mins or so.. I then meet w 3 more various reps asking unnecessary question and lastly someone to poke at me on how im taking a lot of meds ie. 30mgs a day… The last visit the prescription was handed to me and was 30 tabs lower than expected which is the norm. I have to after a 3 or 4hr wait go back in and ask for the correct AMT of meds. If the doc is feeling vindictive he gives u 2 weeks of meds and ur back in 2 wks later. Pain mgt in Ohio is destroyed and it’s impossible to main tain a stable doctor or a stable med regiment. I don’t know what the solution is but I’m now going to move out of state away from friends family etc all bcuz pain mgt pain med laws in Ohio screw patients and they don’t care about quality of life issues daily functioning as we are viewed as not patients but instead junkies and crook drug seekers. I’m out of answers but one things for sure it’s interesting how the same Doctors are now jumping ship into the suboxin business… Imagine that… We pain patients need to join those willing doctors and stand up to intrusive government and overzealous law enforcement. If not we are screwed

  3. Sandra G at 6:12 pm

    Nice hearing that Tina. Glad you found a good doctor. My husband an I have thought about going to San Deigo to live. I was afraid to because I didn’t know how bad the doctors are.. Please let me know more Tina if you can. Thank you
    Sandra G

  4. Sandrag at 1:40 pm

    People need to stay away from Washington and for sure Olympia, WA . No kindness here from doctors . Palliative Care is so sad not happy people.
    I can’t make it to doctor appointments due to pain. I have 90 pain pills for the month. Oh my goodness that’s four extra pills a month. I ( for seven years ) always used those pills for when I’m awakened in the middle night with pain so bad it sometimes makes me scream out.
    So all this was told to my Palliative Care mr ignorant wrote on my perscription bottle….(.can take additional tablet prior to healthcare appointment …) it make a customer at pharmacy laugh. He said he had a meeting with the guys tonight that it was going to be a good chat. Hummm whatever that ment.
    I really have a ignorant doctor. He is the one who said if I had my way I would get rid of all the alcohol and drugs. I’m setting in pain and this is a Palliative Care Doctor. Can you believe what I got myself into.
    I don’t know what to do.
    Thank you for listening
    SandraG

  5. Sandra at 9:25 am

    It’s hard to get with doctors who have dumped you because you need pain pills. I honestly think most doctors really don care.

  6. Maureen at 8:42 pm

    Tina, I feel for you. I went through a very similar happening 2 yrs ago… It took me another year find a decent doctor to manage my pain care. It’s truly ludicrous and unhealthy, what we have to go through. I’m happy you found a good, caring doc…they are rare to come by these days. Keep strong.

  7. Tina at 12:16 pm

    Until recently I was going to a clinic in San Diego for pain treatment and every two weeks I would have to go back and get my refills and about every month they would lower my meds. I went in for my two weeks and told them I was experiencing withdrawal symptoms and the Dr. just laughed at me and said I was going through menopause. I just started crying. My blood pressure was through the roof and my pulse was 125 and she still told me I was going through menopause. These Drs. have no understanding, sympathy or even any idea of what they are doing. Needless to say I quit going there. I found a great compassionate ,caring Dr. Who truly cares about me as a patient in pain. To top it all off the clinic never even called to ask why I had quit going there or even to check on my welfare or well being.

  8. Marion Eick at 5:37 pm

    I understand completely I’ve had fibromyalgia since 1984 finally was doing okay with treatment doctor retires new ones want me go to a pain clinic instead. I’m frustrated I just want to live the rest of my life the best I . This has to stop I never asked for more or took too many. Why .cant they leave me alone?

  9. Anonymous at 7:40 am

    HJ- thanks for responding. I agree with and relate to so much that you wrote. Keeping in mind that “it’s not our fault” is helpful because I can always manage to twist things around and blame myself. I used to have pretty much the same opinion about doctors. Saw them rarely and trusted them completely. I alternate between being angry and depressed too, neither of which serve me well. I think I would also benefit from seeing a therapist who specializes in these issues. Our conditions are enough to deal with. The lawmakers and agencies “playing with people’s lives” is sickening.

  10. Tina Combs at 7:54 pm

    If another 30% of my medication is cut in half, I WILL go to the streets. I WILL do what I WILL BE FORCED TO DO to keep from killing myself for my family’s sake. If that’s not enough I don’t know what is!!

  11. HJ at 4:59 am

    Anonymous, I’m sorry you feel that way. People don’t understand. I saw a cognitive behavioral therapist that a doctor insisted I see. She helped me… mostly by validating my experiences. “Yes, it IS hard to live with chronic pain — no wonder you’re feeling depressed — I see why you’re having a hard time with your doctor, I tried to talk to him, too…”

    It’s a real shame we can’t get the same validation from those who are close to us. I think they deal with frustrations that they can’t express… like, “She’s not who she used to be.” That’s valid, too, but it’s not our fault. They also can’t understand our experience, because they haven’t lived it.

    This is very, very isolating. Few of us are lucky to get support from the medical community — especially now. Before I got a diagnosis, I had reached the point where I felt my life as it was… was intolerable. I was so beaten down by the medical establishment when I tried to find help that I was planning to go home for Christmas to say good-bye to my loved ones and then find some way to bring an end to my existence.

    The current state of the oppression that we face from the “top of the chain” that’s trickling down through our interactions with our physicians has really left me wondering if I’ll again be put in that position at some point at which I’ll lose the parts of life that give me meaning and purpose.

    Why don’t they just legalize doctor-assisted suicide? It’d be more humane than throwing people into withdrawal, taking their support away and beating them up over their “failure” to live with their pain.

    The irony is, if I had diabetes or cancer or any of the “acceptable” chronic illnesses, I’d have a whole danged support network of specialists and treatments. I’d have folks watching out for me. I used to not have this kind of attitude… I used to think doctors were Gods, could do no wrong, always had my best interests at heart… Now I’ve developed this sort of attitude to protect myself.

    I’m so mad about the way things are. Just wait awhile and I’ll run out of energy to spend on being mad and I’ll be depressed. These lawmakers and the DEA are playing with people’s lives.

  12. Anonymous at 2:19 pm

    HJ, I find it absolutely amazing, and indicative to me of just how connected we as humans really are, the fact that you happened to use the phrase “treat me like garbage.” For the past couple weeks, I have been using those EXACT words to express how I’ve been feeling, not only by the medical community at this point, but also family. I guess I’ve become a colossal inconvenience of sorts; they want to be able to fix me and be done with it. But when I read those very words, I could not believe it. I am tired of being treated like garbage!

  13. John Plummer at 11:19 am

    It is unfortunate that so many pain management drs are intimidated by the DEA. DEA who violates HIPAA by demanding access to patient records to determine whether Dr is meeting their nonprofessional standards. DEA which forces drs to give expensive multipanel drug tests to their patients. DEA who threatens drs with license revocation for recommending Cannabis for pain.
    We all need to stand against this interference in healthcare

  14. Jean Price at 3:42 pm

    Dr. Joshi….in revisiting your article, it’s not surprising to me to see even more appreciative comments thanking YOU and APPLAUDING your article! In this day and age, most people with life limiting pain are sadly more used to being rejected, condemned, or discriminated against by the medical profession… including nurses and even pharmacists…and lately even our medical insurance companies. As both a person with a background in nursing and a person with a long history of daily pain, I have wondered since the beginning of this witch hunt against opioids and people with pain…WHY?

    WHY have SO many doctors failed their oath AND us, their patients….
    * by no longer treating long term, daily pain appropriately OR AT ALL?
    * by not standing up to the CDC “guidelines” and the DEA gestapo tactics, to fight
    for themselves and their right to practice medicine AND for their patients?
    * by not even doing ASSISTED referrals and COVERING the patient’s medication
    needs until pain management appointments could be arranged…actually
    breaking the law by abandoning care and forcing people into withdrawal!?
    * by allowing the lies, the skewed statistics, and the deceptive medical rhetoric
    of the CDC to go unchallenged?
    * by not answering and protesting the media’s sensationalized and distorted
    coverage…at least by presenting editorials about the absurdness of the medical
    misinformation, uncovering the many false statements regarding opioid pain
    medications, and by working to definitively separate the issues of addiction from
    the legitimate use of opioids for pain…perhaps even highlighting the BENEFITS
    of appropriate use of opioid medications as an adjunct therapy option to help
    people with persistent pain lead much more functional, quality lives?
    * by not researching and exposing the conflict of interest some CDC officials have
    in OWNING drug rehabilitation clinics and in being affiliated with many big
    pharmaceutical and insurance companies?
    * by not protesting the actions of Senators who have deleted ALL questions about
    the QUALITY of pain care received from the patient’s hospital care surveys…so
    the hospital’s REIMBURSEMENT by government insurance will not be reduced
    by poor patient care scores REGARDING PAIN?!
    * by not joining with their fellow professionals and organizations IN FORCE to
    protest the AMA’s DELETING pain assessment as the fifth vital sign?
    * by not publically protesting this ongoing discrimination of themselves AND their
    patient’s, and the erroneous changes in the educational curriculum our
    upcoming physicians are receiving regarding the use of opioids to be a
    dangerous and ineffective treatment of persistent pain?
    * and lastly…by CHOOSING TO BE PART OF THE PROBLEM INSTEAD IF BEING PART OF THE SOLUTION TO MILLIONS OF PEOPLE LIVING IN MORE PAIN THAN IS NECESSARY!!??

    So I’m still left here without answers…just a lot of WHYS? Is it because people in pain aren’t “fun” to treat? Because there are no ACTUAL CURES…so no “good doctor” feelings of success? No “I’m the expert…I have fixed you!” justification at the end of the visit? Or maybe it’s the task of discernment and the TIME and ABILITY, even maybe the DESIRE….to do a thorough hands-on assessment to actually QUALIFY a patient’s pain? Instead of just relying on the patient saying they have pain…but then most of us have literally trailer loads of test results and THE PROVEN DIAGNOSIS of often MULTIPLE pain generating diseases and causes! So, what IS the reason? Liability? Well, that comes with all medical care, doesn’t it? Thinking all people lie or are dishonest? Hmmm, some do…most don’t! But, again, discernment…actually seeing the person and knowing what pain can look like…despite the combed hair and maybe the makeup or the fresh outfit…the eyes don’t lie! EVEN WHEN SMILING, THE EYES CAN SHOW PAIN! And those who aren’t truly in pain usually have tell tale signs they give also….IF ADEQUATELY examined!!!

    Let’s face it, PAIN has never been welcome! Either to have or to treat!! Older dictionaries will tell you the word “pain” is derived from the word “punishment”! So, did we start out with pain being seen as DESERVED or AS JUSTICE of a sort?! I wonder…since most people will see someone with a cast on their arm and ask “What did you do to yourself?” Rather than just asking what happened!! Telling, isn’t it? And how many of us blame something we did or didn’t do when we have an accident or our pain level is escalated from “overdoing”?!!

    Maybe our doctors just do not want to be bothered with figuring out who is lying and who is honest…and the guidelines gave them an excuse! My long time family doctor told me YEARS ago he would no longer prescribe for my life limiting pain…when I asked WHY, since i was STILL in pain and had always been compliant and legitimate in my usage of pain medication….he told me repetitively “IT WASNT ABOUT ME”!! Yes! He said that! It was about Micheal Jackson dying! When I said, NO, IT SURELY WAS ABOUT ME AND MY LIFE, and questioned if he couldn’t just document what my conditions were and also why he was treating my pain with the particular medications, he said he didn’t want his office disrupted by “records reviews”!! So are we really to believe our lack of appropriate pain care is to be laid at the feet of dead celebrities and the RISKS of office routine being disrupted? I guess that’s as good a reason as any…if the reasons don’t have to make sense and if you’re NOT the one with pain!!

    Seriously, we must All work together now more than ever…doctors included. And our concerned and compassionate doctors, several of which we’ve heard from in these comments, can be a real asset as we go forward to reach out to more doctors and increase our efforts to stop what is happening to so many whose pain medications are being reduced or denied altogether. Maybe the reason why isn’t as important as just US asking THEM…. WHY NOT use opioids when called for…and telling them what NOT doing this is creating across our nation as millions of people AND their families are unnecessarily impacted by untreated, undertreated, and inappropriately treated LIFE LIMITING, even LIFE THREATENING DAILY PERSISTENT PAIN, which could be AND has been in the past lessened by the legitimate use of opioid pain medication, as an important adjunct therapy option. The recent rally in DC has given us a big boost, and we can keep an active advocacy momentum going if we all pitch in and do what we can when we can…and find a friend perhaps within the pain community who can take up the slack when we can’t finish a task or project! Teamwork always gets you farther down the road..and we so need everyone on that road for a change back to better pain care and more pain treatment research! Including our doctors! And the public!

  15. Stacey Fields at 5:36 am

    Thank you for speaking out for chronic pain patients. We need more doctors to stand with us and to speak out as you have. I have chronic pancreatitis due to gallstones, as well as 3 herniated discs, 3 ruptured discs and a lower lumbar fracture. According to some pancreas specialist CP is one of the most painful things you can have. I also run a support group for people with CP, we have over 1600 members and growing daily. We have lost several members to suicide in the last year due to having their pain medications taken away and they could no longer take this horrendous pain any longer without medication. I too wonder what happened to “Do no harm”? Chronic pain patients are treated like common criminals. We are subjected to expensive urine screens ( my last bill was over $1000.00) rising deductibles and premiums, ours has risen to $800.00 per month with a $7500,00 deductible per person. It cost me $250.00 every time I see my PM doctor. Not only are we treated inhumane we are also being gouged for more money that most of us simply do not have! This new war on opiates is causing more harm than these politicians seem to understand. Most chronic pain patients also suffer from PTSD from all they have been put through as well as suffering from depression. I would think this would be against our rights as human beings! We MUST ALL stand TOGETHER in order to change this tragedy. This means all the pain groups NEED to work TOGETHER as well which does not seam to be happening. The rally in D.C. is a start but most pain patients can not make the trip due to pain or finances. The DEA recently tabled the ban on kratom because they got so many letters from people so maybe we all need to send letters to the DEA (All mailed on the same day) so that we make a statement when they are overwhelmed with our letters? I am not sure what the answer is but I am positive if we do not take action NOW we will certainly lose more people to suicide. I have heard that the CDC is showing all deaths as opiate related if the person has been on opiates for pain which will only strengthen their stance. Let’s all ban together to fight this and get the government out of our healthcare! I can be reached at fieldsie62@gmail.com if I can help!

  16. Lisa Hess at 12:17 pm

    Dear Debra, I feel your pain both emotionally and physically. I do have to say that I too have Fibro Myalgia along with several other pain causing problems/diseases and like you have been on Pain Management since 2000 but didn’t start taking medication on a daily basis until 2006 when I could no longer stand the pain and became permanently disabled. I had a similar experience with my Pain Management doctor (I actually responded to another post that was from the original Dr Joshi post about that experience). Fibro myalgia in and of itself can make you be bedridden and it is true that Pain Medication does not work for FM. Could it be possible that the relief you were feeling from your pain meds was actually working for you with your other pain causing issues, FM on the side (I too have a very bad immune system stemming from long term, undiagnosed and untreated Lyme Disease and its co-infections, Thyroid Disease and FM). For now, go to your GP and see if he/she will put you on either Lyrica (I don’t personally like it as I had too many side effects). I am on Cymbalta for my FM. When I first started taking it in 2008, after the first 28 days I felt no relief and called my PM and told them .They told me to be patient as “it takes at least 30 days to take affect” and believe it or not, on that 30th day and for the first time, I felt relief from my Fibro Myalgia. I will never forget that day. Cymbalta is an anti-depressant and because I was already on anti-depressants, I had to use it as a replacement for my depression which stems from my illnesses so be careful about that. There is another drug out there for FM but not sure of the name of it. Anyway, don’t give up searching for help. When what happened to me like what happened to you, I almost gave up, but with the help of my Spine Surgeon (I told him exactly what my former PM did to me, which actually didn’t surprise him of my PM’s actions and because I’m the type of person who tells it like it is) he said doctors do not like to be challenged or told what to do but he understood because of who that doctor was. My spine surgeon is the one who found me the most wonderful PM Doc for me and I loved him from Hello. He was the only doctor who accepted the challenge of having me as a patient and I am his sickest (physical and pain wise) in his practice and has me on the highest amount that the DEA allows because he knows we have tried everything there is out there including nuero-stimulators but nothing works. I’ve had well over 30 invasive and non-invasive procedures and several years in PT but nothing worked, and because steroids are used in most of these procedures I can’t have them done as it would put my spinal column and cord in danger of infection. Unfortunately, my only choice is medication. Use the doctor in your current team of docs that you trust to advocate for you. That’s what I did and that was the only way I was able to get a new PM doctor. 7 doctors had turned me down. I wish you the best of luck and hang in there. We are in this together because we know how each other feels.

  17. Lisa Hess at 8:15 am

    Hi Kristin, 3 years ago I was where you are now with looking for a Pain Management Doctor who would accept me into a program and this was before all the “Epidemic” status was in full swing. But before I tell you what happened, please be careful taking so much Advil because it can thin your blood (which is what is happening to me right now because I take it for dental work) and can make you get bleeding ulcers of which you have enough pain you don’t need those. Second, you said you don’t know where to turn now, If you are seeing a specialist for your condition that is causing your pain, ask him/her to help you find a competent Pain Management doctor or organization and third, and I learned this the hard way, if you call and they tell you right away that they only do procedures or injections, just say fine and make the appointment. Through others I have found out that they use this tactic to deter “Doctor and Pill shoppers” Do whatever they ask you to do and unfortunately, if they don’t work or if you have your records stating so and they still want you to try then do it. They will offer you medication if so warranted at that point. In other words, follow the program again and do what you have to do to be compliant. I too have always been compliant, negative drug tests, yada yada, and it doesn’t matter to a new PM, so just follow their lead and see where they take you and if you don’t like one doctor in the practice, ask to see another in the same practice because you may have a personality conflict (this too happened to me). So, In a nutshell here’s what happened to me. I’ve lived with Chronic Pain for 20 years but have been disabled for 10 years because I had to go on pain meds on a permanent basis. My current cocktail of medications is 60 mg of morphine and 30 mg of Oxycodone. Whereas, at the beginning I started with 50 mg of morphine 2x/day and 1-10/325 every 6 hours of Percocet (name brand) for break-thru pain. People may say, that is excessive, but if one struggles with the amount of pain from several diseases of which I have been for the past ten years, it is not excessive and some days maybe only one or two Percs could get me through until these past 3 years. So, three years ago my PM wanted to wean me down to a total of under 120 mg equivalent of morphine per day. So we started by going down to 80 mg morphine x2/day and 1 10/325 every 8 hours. Most days, waiting 6 hours was very hard, waiting 8 became almost impossible. Now, the reason the PM gave me for weaning me down was a story he told me about there was a study done with 200 participants over one year and that it was found that the less amount of pain meds they took, the better the pain felt and that the total mg. dosage I was on was equivalent to over 400 mg morphine a day which was more than a patient with stage 4 pancreatic cancer would take. For years he had been telling me that 10 mg. of Oxycodone equaled the equivalency of 6X the amount of 10 mg of morphine which would = 60 mg per 10/325 tab. So I said, “ok let’s do it.” So, each month he took away 40 mg of the morphine until I was down to 60 mg x 2/day and I was suffering. I couldn’t sleep because of the pain. I couldn’t drive because of the pain. I couldn’t think because of the pain, I could barely walk because of the pain. I cried all the time because of the pain and, I wanted to die because of the pain. Then I thought about it and said to myself “if I were on an equivalent of 400 mg of morphine a day I don’t think I’d be able to stand or walk or function so I began doing my own research of morphine equivalents. I spoke with pharmacists, other doctors (my cousin is a PM but lives too far away) and PM PAs, and used the online calculation tables I found on the internet and they all said the same thing that 10 mg of Oxycodone was only 1.5X the equivalent of 10 mg of Morphine. In other words, 10 mg of Oxycodone=15 mg of Morphine. When I had my next appointment with him and showed him all my evidence, he was furious and then changed his story that 10 mg = 3X the amount. I asked him to show me the report because I no longer believe there was a report and he refused. I was seeing his PA that day and even at this low amount that I was now on was still claiming I was at such a high level over the amount that someone with Stage 4 with Pancreatic Cancer was on so now I really became suspicious and asked her if she read this report. She said no. So I asked her how she knew about what the report was stating of the study and her answer was “because Dr. ______ told me. At that point I was not only angry but I was also crying and telling her to please either bring me back up to 4 10/325/day or up to 80 mg of morphine because I had no quality of life any longer. I know about the whole theory of the Neuro-sympathy of pain when on high doses of pain meds, however, I also know that I started low in 2006 and as years went by, my pain would get worse because my diseases were getting worse until I was at the dosage I was on. Now, don’t think I only tried this combination of meds this entire time. I did not. I’ve tried at least 6 different types of morphine or morphine acting medications including the Patch both with and without the support for break thru pain, but the side effects were just too much for me and I always went back to the medications that always worked without side effects. I’ve had every type of non-evasive and invasive procedure that is out there of which none had help with my pain because the damage was spreading from my brain stem all the way down my spine and into my legs (my arms had always had neuropathy and my neck had already had 3 fusions). So now I was at a stage of head to toe pain. I even agreed to having a neuro-stimulator put in, which also never worked (but that’s in another post as to why) and had to have it removed. Anyway, after giving him the news of my research he was so furious he told me to get a second opinion. When I asked him if the second opinion was different than his would he change my dosage back, he said “I’ll send them your records.” In other words, “you are no longer welcome in my practice.” I must add that this doctor is not American and comes from a country that women should not be allowed to speak to a man with this type of knowledge or tone and even though I was a patient of his for over 11 years and didn’t want to find another doctor, he gave me no choice. What that did for my depression just about sent me over the edge for months. Because I was so afraid to go through withdrawal and what I also didn’t know at the time while speaking with my Spine Surgeon he told me that the PM was legally obligated to continue with my pain regimen until I could find another doctor so I would not go through withdrawal. Knowing this, did make me feel a little safer knowing that the law at that time was on my side, but I still had to find another Pain Management doctor. I wrote so many letters with copies of my records and sent them out to at least 6 other PM specialists in 2 counties and was turned down by every one of them. If I called to try and make an appt with a new PM, the receptionists were told to tell all new pending patients they only do injections. I was stuck, because I could no longer have anymore injections as my spine could no longer stand any more trauma to it and procedures no longer helped even from the few that used to for short periods of time or for diagnostic purposes. So, I went back to my Spine Surgeon practically destitute because I had failed. He told me he had two PM doctors that he knew that “might” take on my case and he would make some calls. Thank God I had him on my side. He’s done almost all of my procedures and 4 out of 5 surgeries so far (I will have to have probably 2 more within the next year or two). One doctor turned him down, but the other was quite sympathetic to my situation, but had just left one of the practices I tried to get into because he didn’t like the way they were treating their patients. The one problem, however, he didn’t have a practicing office yet, but was able to put me in touch with a PM Nurse Practitioner who would help me. I also learned that the best practice when seeing a new doctor especially under these terms was to bring someone with me who knew my circumstance and could verify the person I am. Good thing for me that my best friend who came with me is also a cop. The NP listened to my story and could see the agony I was in and brought me back to the level of 80 mg morphine 2/day and the 4 10/325/day Percocet. I saw her for 5 months waiting for my new doctor to open his practice. The NP and he were in constant communication with each other on my case. I also asked her if she had ever heard of this study and she said no, she’d never heard of any such study that I described to her as it was described to me and thought the treatment I received from my PM was completely out of anger and embarrassment if nothing else. I also asked her about my equivalency research and she also verified that 10 mg of oxycodone does = 15 mg of morphine. When I finally met my new PM and he knew my entire history by now, he and I hit it off right away. I’m 55 now and it’s so weird that most of my doctors are now younger than I, but the biggest compliment I’ve ever received from any doctor he gave me. He said “I can’t understand why Dr _____ didn’t appreciate you doing your own research to find answers, I love that you do that because it makes it that much easier for me to treat you and not have to explain the whats and whys of your treatments.” He’s probably the best Dr I’ve had the pleasure of working with in the 20 years that I’ve been dealing with chronic pain. Kristen, I wish you the best of luck.

  18. Terri Lewis PhD at 10:35 pm

    Bottom line?

    There is no veracity, reliability, validity to treatment protocols derived without the patient voice.
    Those who are the most affected by treatment have the right to scientific rigor.
    Any consent derived without the best of the information (known and unknown), an identified change management protocol, and meaningful measures of impact is fraudulent.
    Those who are the most affected must have a seat at every table.

    EVERY table.

    Runaway patient harm and costs of care are the result of treating through a reimbursement based system as opposed to an evidence based system.

    All parties to this equation should insist on this. It’s in everyone’s best interest.

  19. Kristin at 8:58 pm

    Thank you Dr Joshi, you have given me that one sliver of hope to hang onto. Because at this point I don’t know how much longer I can “live” this way. I have done everything right for over 10 years. I’m still trying to do everything right even though my meds have been reduced by 2/3. Because if I do find a new doctor to take me as a patient I want to be able to show them that even now in this daily agony I’m being put through, I have not violated my pain contract. I am up to 20 Advil a day which isn’t really helping, but I have not exceeded the daily dose he now has me on or tried something else.
    Also I noticed someone posted your dr retiring has nothing to do with it. That is not true. Unless you know how to Dr shop, which I don’t, finding a new primary Dr is impossible once you mention that you are a chronic pain patient. It does not matter that you have 10 + years of perfect records and that the back specialist recommendations say there’s nothing we can do for her, continue with medical management if it’s keeping pain at bay. Nowadays no doctor wants to deal with it. That just doesn’t seem right. So I was sent to the only pain clinic around where they are weaning everyone off and you are suppose to be mindful of your pain. That is my treatment, or lack thereof.
    I don’t have withdrawal symptoms, but I have pain that now hovers between 7-10 where before I was around 2-3. It’s taking its toll on me. I’m trying to stay strong for my family, but it is very hard. I miss walking. I miss picking up the kitchen. Just simple things. The real kicker the other day was my dog was injured and they told me how they were making sure he was comfortable with pain meds. So there you have it. I’m being treated worse than a dog.
    I wish there were more doctors like you.

  20. Maureen at 7:48 am

    Dr. Joshi,
    Such an awesome, clean and truthful post! Thank YOU. I always enjoy and fully appreciate your writings, and your support. You and the other doctors who post on NPR give me HOPE to hang on to.
    I appreciate you all! Please keep us updated. With gratitude, Maureen

    @Gracie…wow! lucky you to have Dr. Joshi in your life/care!
    @ ALL…. please lift up a prayer for the Pain Rally happening in DC this weekend!! They are doing it for you!! This is the beginning of warriors getting out there and showing up about our community. Please keep them in your mind…

  21. Debra Powers-Konczal at 6:33 am

    Dear Doc, I have been in pain management for ten years. I have a number of issues. Lupus, Fibromyalgia…(it’s ridiculous Dr. says new studies show pain meds don’t help with Fibromyalgia..I can tell you they do.) I have herniated discs, bulging discs, degenerative disc disease, Diabetes, Latent TB. I could go on and on. Your probably wondering about the tb it’s because of what the Lupus has done to my immune system..not to mention my muscles and heart.. At age 47 heart attack needing stints. To my point then. My Dr. has labeled me as OPIOD DEPENDENT….ok..I’m also Labeled INUSULIN Dependent….I’m NOT addicted. BUT he has taken my credibility and slandered me in the worse way. HE has VIOLATED his oath of first do NO harm. He and his staff called me an ADDICT, and put that in my chart. NO other DR. will see me now. A 28 year old snott nose has the ability to take away my quality of life, dignity and slander my name. NOT only that he labeled me a Hostile and abusive patient when I reminded him of his oath to First do NO harm.
    I have written the Board of Directors I don’t think it will go far. I now have NO credibility. I never asked for more than prescribed and I always passed drug test….It was just we are trying to save you and help you. Under the new guidelines by the DEA you don’t meet the requirement for pain management. I’m trying to save your life. blah, blah, blah,….. When I told him I do meet the criteria and sited why he became upset. Told me NO more pain meds he’s weening me off because I have a problem….WOW…..
    I destroyed my pain meds…and haven’t called in for his “weening off dosage”. He didn’t believe me when I told him I did this…I got the condescending “IF you were able to do that I’m proud of you.” Honestly he needs a good spanking. Anyway I did it to take control of my life on my terms….I don’t know how long I can hold out in this much pain. I’m bed ridden with ice packs on my spine, 3,600 mg. of Gabapentin and Flexeril….I DON’T HAVE A LIFE. IT WAS TAKEN FROM ME BY THE MEDICAL PROFESSION. 🙁

  22. Kathy Galm at 2:11 am

    Thank you Dr Joshi for being the advocate that you are. Patients must understand that they have to be their own best advocate here. This is a CRSIS people!!! Yes, we all have our pain problems however if we don’t stand up for our human rights them the CDC and the DEA with take your medications away from you. It’s not about your doctor retiring. That is the least of your worries. There is no such thing as a pain specialist. They are family doctors that have taken an interest in chronic pain management. They are not protected just because of a label called pain specialist. These doctors are being persecuted for only wanting to help their patients live the best quality of life they can…..Unfortunately if you think these guidelines won’t effect you are clearly mistaken. A good physician who treats chronic pain is not exempt from the repercussions of the CDC, DEA and many others who are opposed to these medications being used. A hospital in New Jersey has removed opioids from there ER. Everyone will be affected by this. Write letters to your politicians!!! Start a class action law suit against the CDC. This is outrageous!!! Your lives are in the hands of people who could care a less about your pain med needs. The media has taken this by storm and turned it into a fiasco!!! This has nothing to do with pain patients. It’s about illicit drugs crossing borders!!! You are being thrown into the same category as a drug addict.
    The hippocractic oath is not something that doctors have to take. It is a choice!!! They are and will do harm. They are in fear of being sanctioned by these regulatory agencies.
    Please hear my words. Rally together in your own towns, cities, states. Don’t sit there and do nothing and wait for someone else to fix it. Start the dialogue and be an active advocate. Be part of the solution, not the problem.. Pain patients are in a crisis!!!
    I hope everyone understands where i am coming from. I mean you no harm from my words. Only wisdom!!!

  23. D at 10:29 pm

    If doctors would challenge the CDC to examine the unintended consequence caused by choosing to have representatives of the addiction industry develop a chronic pain treatment guidelines, then maybe those with chronic painful disease wouldn’t have to suffer as if they are substance abuser being treatment with the “12-steps to suicidal pain” treatment plan.

  24. Kathy Galm at 8:48 pm

    These regulatory agenies are playing with our lives. They are being our judge, jury and executioner. I am a pain patient that has used the fentanyl patch for over 3 years. I have recently weaned myself off it completely and I am now in the same pain I had with cervical osteomyelitis that caused a severe permanent kyphotic deformity. I am bedridden in severe pain again. Carfentanyl is the real problem!! It’s being supplied by the black market in China and crossing borders. It’s a elephant tranquilizer!!! Go after the real issue and not the suffering pain patients. This is prohibition, people. Please stand up and fight for your rights. Do everything you can!! Anyone who takes this little green pill from the streets, is basically putting a gun to their heads. Russian roulette!!

    P.S I weaned myself off the patch because I new this was coming. They are not going to be the ones to dictate my life. I will find something else that works. Hopefully😢
    From Canada

  25. Robin G Noel at 6:00 pm

    I understand those thoughts exactly. Even though I have a great pain management doctor that will prescribe the pain medications that help, I still struggle with pain and depression. I can’t ride very far in a car and I certainly can’t go out in our boat. We live on the lake and I have been out in our boat one time in a year. Any kind of compression to my spine, puts me in excruciating pain. A slightly bumpy car ride and I have a severe headache that could last for months…months. I’m blessed to have two boys, so it won’t matter when my parents pass away because I couldn’t do that to my boys. I’m SO thankful for my doctor but I often consider what will happen when he retires. What will happen if I can’t find another doctor that trusts what I am telling him about my pain and doesn’t have ten plus years of history with me to know that I take my pain meds as directed and that during times when my pain is better, I go off of the pain meds and I don’t horde them. He trusts me as I trust him. It is so stressful to even consider finding another doctor at some point. I shouldn’t have to be afraid that I won’t be able to find another doctor that will treat my pain with pain medication that is actually developed to treat pain, instead of a bunch of different drugs that were never meant to treat pain and come with all kinds of nasty side effects that I would have to learn to live with. I’m one of the lucky ones, I DO have a pain management doctor that is committed to managing my pain with the proper pain medication . Why are doctors treating our pain with all kinds of dangerous medication, instead of the pain medicine that will work with out so many of the nasty side affects? Why?? Because others are abusing them and so those of us suffering with pain are being made to pay the price. Doctors need to be the doctors that you trained to be. Not the judge and jury of your suffering patients.

  26. Donna Rubinetti at 2:05 pm

    Thank you for your advocacy work and for lending a voice for all to hear about chronic pain, particularly RSD/CRPS. I pray that the October conference brings advancement for treatment for this illness. It truly is hell on earth.

  27. Lisa Hess at 1:20 pm

    I commented yesterday when I first saw Dr Joshi’s story, then I watched the Presidential debate last night. We are in a lot of trouble no matter who gets elected and it frightens me to the core. Suffering from Chronic Pain is not fun and I wish I could just go in front of Congress and scream “I know you know someone who is suffering from Chronic Pain!” “Do you want them to suffer more?” or “Do you remember how much pain you were in when you had a broken bone, or severe sprain, bad tooth ache or surgery?” The latter I ask my husband all the time to remember the pain and his answer is always the same “but I knew it would go away.” People who live in Chronic Pain know that the pain never goes away. Sure, we may have one day better than the day before, but we also know it won’t last. We are told to do more exercise which is a good alternative for people in Acute Pain, but Chronic Pain sufferers can’t really exercise because it makes the Pain worse, especially when your back muscles spasm 24 hours a day. In 2015 I had to have the spinal cord stimulator removed from my back that was supposed to help with my lumbar and sciatic pain, but it didn’t work. I was constantly having more issues in my neck, arms, lumbar and outer legs and the stimulator was supposed to work on at least my legs, but I had to turn it up to it’s full capacity because I had the stimulation on the inside of my legs and under normal settings I couldn’t feel any relief so by turning it up full blast, at least I felt the residual stimulation to the outside. I finally convinced my Spine Surgeon that I needed MRIs after both my arm and leg Nerve Conduction and EMG studies came out positive. When the Neurosurgeon asked me where did I feel the stimulation and I replied “on the inside of my legs” his response was quite loud of “SHE’S GOT THE ‘U’.” I said “Excuse Me?” And that’s when he told me a secret that very few doctors and/or patients don’t know about but the Stimulation companies do, but it is not in any documentation, websites or reps telling the truth. The nerves that send the signals to the brain where the the stimulation works are Criss-Crossed in my brain and that I should never have had the stimulator in the first place and that I am not ever a candidate for a stimulator because it will never work on me. He told me that it is rare and very few know of this condition with the stimulators, so I asked how did he know and he said if he hadn’t seen it one other time before during his own training, he wouldn’t know about it either. My stimulator trial actually failed and I didn’t want to do it, but after 4 months of back and forth with the rep, she convinced me to go forward with the surgery and I did, but wish I hadn’t. I have so many similar stories about all the procedures and surgeries I’ve had that had gone bad, multiple pain making diseases/disorders and conditions that the only thing that works for me is Medication as I mentioned yesterday. Those of you who said we are stigmatized couldn’t be more on target! I’ve tried Social Media to spread the word to help those of us with Chronic Pain and when I asked why this person or that person wouldn’t put out the message I got answers like “Sorry, I don’t feel bad for you because my son had a minor accident was put on Opioids for a week and got addicted,” or “I didn’t want anyone to think I’m the one taking drugs and I’m not in pain.” This seems to be the norm of those who have no idea what it feels like to be a prisoner within our own body. When the dispensing laws changed for 2016, my PM doctor told me I was his only patient on the amount of Opioids I’m on, but I have to be on them because “we have tried everything possible through procedures, surgeries, physical Therapy (of which I also failed twice–Medicare wants an update at the tenth session if there is any improvement of the condition of the patient and if there is, they will continue to pay for more therapy, if there is no improvement at all, you cannot continue PT. A couple of weeks ago I asked my Pain Management doctor if I am his worst patient physically and he said if it were just my Lumbar spine no, but because of all my cervical issues, arms, thoracic, lumbar and legs from herniated discs, constant muscle spasms, damaged paraspinal muscles, RA, OA in every joint and throughout my back, sciatic nerve damage on both sides and now damaged S1 joints and Bone Marrow Edemas at C1/C2 and L5. C1/C2 have already started Eroding and I will have to have that fused and now C3/4 is herniated which is above the triple fusion I already have. The discs in my Lumbar L4-S1 are completely dead and though I am a surgical candidate, my Spine Surgeon told me if he operates on my Lumbar spine, “that would be the end of me and I wouldn’t be able to stand the pain which would be 10-fold worse than I’m already in, because my spine is so compromised from all the surgeries and procedures.” And, I just found out that the discs above L4 are degenerating at an aggressive speed. That’s what and why we need the people of the DEA, CDC and FDA to understand. We are not all the same, do not all have the same conditions, we are not addicts and our bodies depend on these medications so we can try and have as normal a life as we can; even if it’s for just a few hours a day. It’s not us the patients they need to go after; it’s the General Practioners, Orthopedists, Rheumatologists, even dentists or any other doctor that prescribes Opioids for more than 1-2 weeks max dependent upon what’s injured. If they are still in pain after that amount of time, then those patients should then be referred to Pain Management. Our Pain Management doctors are our lifelines, but if these other uneducated doctors continue to write prescriptions because someone is having a back ache, sprained an ankle or had a tooth pulled, we are the people who end up on the losing team. Every doctor has a DEA number on his/her prescription pads. The DEA is trying to “round up” these over prescribing doctors. Good, keep it up. When they check the prescriptions that are being written for actual Pain Management from Licensed Pain Management Doctors who are educated and who knows what’s best for his/her patient and let them have the decision as to what and how much should be prescribed for their patient. If there is questions on behalf of the DEA about specific patients as to why these prescriptions are written, then contact that doctor. For me, if they want to ask why I’m taking the amount I am taking, I give the government full permission to see my records so they will understand what I am taking and why I must continue to take to survive. I am a living person who is not ready to die, and if I do, the blood will be on the DEA and CDC’s hands and no one else’s. I’ve been on these medications for 10 years and am very careful with my meds and don’t want to stop now because someone who doesn’t know me thinks they know what is best for me.

  28. Kerry at 6:58 am

    You know how desperate this situation is for the masses and the individual. You can take what you’ve encountered and translate it into how it converts over into pain patients lives. We haven’t seen the wave of suicides hit yet that can’t be hidden. We’ve had waves but there’s still many who are able to hang on. There’s going to be a limit to what a human can endure and this huge wave will happen all at once from those who were taken off pain meds all at once.

    Thank you for speaking out! My hope is somebody will rise out of these ashes and lead, not just us because we are too sick and are suffering to get out there, but our advocates and what pain patients can, to clearly state this is intentional genocide and it’s just that simple. We can’t hold on forever. Thank you for your courage and your words Dr Joshi!!

  29. HS at 12:02 am

    I want to know what happened to “do no harm”?! These doctors are taking our pain meds, the only thing that helps make moving bearable, after we have been on them for years. Suddenly the dea & politicians say they have “new suggestions & guidelines ” for dosing, my meds are cut in half, my body goes back to the muscle spasms, stabbing, burning, electric shock impulse feelings, swelling, etc…. which in turn raises my anxiety, blood pressure, pain levels and throws me into an even darker depression because now I’m back to laying in bed or on the couch not being able to do anything but think of ways to end my pain. I have had back problems since I was 9, I am now 45. I have degenerative disc disease, degenerative joint disease, spinal stenenosis, spondylosis, bone spurring, tmj, spinal fusions with cadaver bone graph and laminectomy , titanium rods & screws, herniated cervical disks and more…
    At what point does this become malpractice??!! My Dr. Knows what medicines help me, treat me, & make me able to somewhat function, BUT instead listens to a “suggestion” from a non-doctor source/person/group & changes or removes my treatment; therefore causing irrefutable harm.
    I hope there are enough money hungry attorney’s willing to go for it. Take it to the Supreme Court! I’d go first.
    Dr. Joshi, thank you for being a true doctor and keeping your oath! I sure wish you were my Dr.. please keep fighting for us.

  30. Mercedes at 8:47 pm

    My brother has CIDP… his pain is becoming increasingly excruciating by the day ….
    He is falling down frequently .. he fractured his hip…he can’t hardly walk …his toes are on fire .. and he fell down yesterday again..
    I..have been disabled since my twenties. . A myriad of different illnesses plague me . Among them ….antibitioc resistant infections…another crisis in our misdt ..

    I wonder .. our God is the only one who is in charge of human lives but the pain is too much too bear ….is this the reason why ….euthanasia, assisted suicide is being legalized and accepted in more and more countries every day ???

    No one deserves to live in sheer agony … that is not a way to live …
    Is there a place, an organization , a website.. where we can all , chronic pain sufferers join our voices and demand the treatment and compassion we deserve . Please .. publish the data.

    There are millions of illnesses that can keep a person in agony for years .. some are well known …others …are very rare like cidp …but the gamut is extensive .. too much human misery ….cancer is not the only illness that destroys lives ….
    Chronic pain deserves the same attention as cancer pain

  31. Dooney at 7:53 pm

    Thank you Dr Joshi and always Dr Ibsen. I read a story last night about the news laws going into effect next year in Maine. A pharmacist said chronic pain meds don’t work and we should exercise. I fantazied about shattering her leg into millions of pieces (my bad! ) and giving her some Motrin. I just fell 3 weeks ago, fx my elbow, bruised ribs. On top of other pain, it’s wearing me down . After 15 years of pain caused by botched surgeries, it’s getting harder to be in pain. I’m exhausted, trying to keep a job, keep up with chores and deal with the financial issues, nearly bankrupt. And yes my copay, deductibles, and premiums went up again and no raise for 5 years. And I wonder why my stress is through the roof. I’m scared of the future. I do have some joy with family friends, grandkids but the assault day after day with pain, even with meds, it’s really wearing me down. I’ve tried everything to help my issues but don’t have any more energy left to try. I used to be so strong, could deal with lots of pain and power through the day. I’m so tired and exhausted. Im just ready to be done. And when did not wanting to be in pain become such a crime? I’m sorry for every single one of you who are suffering. It’s BS the way everyone is being treated.

  32. Lisa Hess at 4:23 pm

    I do hope that you cover the subject of Chronic Pain as a disease that is caused by so many other diseases other than just CPRS. I have lived in Chronic Pain for 20 years which started with a head on car accident. I worked the first 10 years un-medicated thinking that if I work it would keep my mind off of the pain. Sometimes it worked, but not always. I’ve had every non-invasive to extremely invasive procedures on my neck and Lumbar spine including, but not limited to a Spinal Cord Stimulator and nothing has worked to relieve my pain. By 2006, after my third cervical surgery I could no longer work the pain was too excruciating and exhausting that I couldn’t do anything without medication to relieve or somewhat relieve my pain. Through the past 10 years I’ve had 5 spinal surgeries, Accelerated DDD causing so much damage in my lumbar and cervical spine, Degenerative Facet Disease, Fibro Myalgia, Degenerative Osteoarthritis, RA, and Lyme Disease (which caused the acceleration of the damage to my spine), And, what do I get? A very lonely life of pain and suffering when I can’t turn my head or my hands don’t work or I can’t walk because it’s so painful I’d rather cut my arms and legs off. Unfortunately, only Opioids help manage my pain whereas I can have a couple of hours to 6 hours of productive time. Not always, but I’ll take what time I can get even if just to be able to enjoy a creative outlet. Having my medications cut in half in January 2016 and will be cut again in January 2017, I’ve become a prisoner in my own home because I’m in so much pain I can’t go anywhere. This is not the way I pictured my life to be at 55 years old. So, please be the voice for so many of us who suffer with Chronic Pain 24/7/365 (and yes I have had many days where I’d rather die than live in this kind of pain) from so many other diseases and not just a few.

  33. Richard Veeck at 4:20 pm

    Thanks for all you do Dr. Joshi! My life changed in 2007 after an ulnar entrapment surgery. Before this, I never complained of pain. Being an athlete, a bodybuilder and power lifter, a health nut, I was and still am, very in tune with my body. Having been through serious sports injuries, broken feet, reconstructed AC shoulder joint and others, never once asking or accepting pain meds. I was able to get through without issue. Then after my 2007 surgery, RSD/CRPS started and it is the worst pain I can imagine. I am a big and strong guy and it literally brought me to my knees in tears. Only way I can describe is it can feel like my feet and my left arm are broken, on fire and with knives piercing the skin. Death would be better. The only things that helped get my life back is opiate pain medication and a botanical called kratom. Even to this day, people do not understand the level of pain, nor why I continue to take pain medication. I have no idea how else to live without the medication. I hope I become a candidate for a ketamine infusion or one of the nrw treatments on the horizon. For now, I feel that pain pills and Botanicals are the only way. I still feel misunderstood. Sad.

  34. Jean Price at 3:14 pm

    Yes…it is time!! Past time, in fact!! But better late than never, as they say! I think you can see the hope you’ve generated as just one doctor speaking out…one doctor who cares about people with pain and what is sadly happening to pain treatment options in this country. We must become more visible, more appropriate for the issues, more active, more supported by the public, more willing to lay it on the line to our own doctors instead of being so afraid they will cut off our medicines completely!! They are at risk too, and we must tell them we won’t desert them if they are treated unfairly. As a united front, we have more clout to be heard, even more numbers. And ALL of our PAIN ADVOCACY AND INFORMATION GROUPS AND SITES must ACTIVELY JOIN US…or risk losing our continued interest and support of their organizations. I applaud your message and your courage, Doctor! The time IS now. The rally THIS WEEKEND IN D.C. is starting off a public awareness and dialogue which we all must work diligently on, each adding what you can, to keep going and produce results. We can do this. We must. And working together, we will.

  35. Samantha Garamillo at 3:04 pm

    My injury that led up to my journey to this crps diagnosis began in March of this year. Sadly to say, my pain management Dr has treated me like my pain was nothing! Even with all the symptoms in front of his face! After the bones scans and testings ect were given to him and I’ve been in excruciating pain, he has me on the lowest pain meds possible that do absolutely NOTHING for me. He suggested a patch of something and I explained and demonstrated with a band-aid that I developed skin irritations. He didn’t care. He continued the same meds. It’s like CRPS is something that will “go away in time” and I should be “oh so thankful” that he gave me anything at all! In the area I live in the pain management specialists clearly don’t care about us and our chronic pain! All they care about is getting their deductible upfront and making me wait 2 hours to see them while everyone else leaves with things they don’t even need! (I know some of those people personally, that get scripts for HUNDREDS of strong opiates and they SELL THEM! Yet they pill count me for tramadol? What’s wrong with this picture) I’ve never called in a script, EVER! I make my appointments on time, I’m honest, and I’m treated like I’m a drug addict! It’s just WRONG! Thank you for speaking up for us!

  36. Sandy M at 2:05 pm

    I thank you also Dr. Joshi for understanding chronic pain and that it is real. I have Thalamic Pain Syndrome as the result of a right Thalamic hemorrhage 15 years ago. The pain has only increased in these years. I certainly do not abuse my medication. In fact, I take less per day than I should be because I knew something like this would come and I can’t get anymore medication for my pain. Now my PVP wants to take my Xanax away and I only take it at night because I hurt do bad I can’t sleep and I get 3 or 4 hours of sleep, sometimes only 2 hours. I thank you for attending this meeting and hopefully we can get things changed. Im 69 years old and am not an addict. It only gives me a little relief so I feel like getting out of bed. Doctors say they understand this condition but they dont. Only my neurologist who retired this month and has taken care of me all these years understood it and he said in all his over 50 years he only had 2 or 3 people with this condition and my was worse than the others, but he admired me because I try so hard. We chronic pain people have to, we have no choice! Thanks again for all you do for us in chronic pain. I’m sure we all wish you were our doctor too

  37. Reduced at 2:04 pm

    I have had dibilitating pain since I was 18 years old; having multiplayer compression fractures as a passenger in an auto accident. I turned to opioid treatment full time when I was 22 after given Adhesive Arachnoiditis AA from multiplayer epidural steriod injections that went astray. The pain doctor wouldn’t treat my pain with opioids until after he created AA in my spine. Here I am 20 years later (42) and now I take an opioids along with other treatment modalities. I have a family (2 kids and a wife) I have never worked because of my disease and honestly if I were at least partly ok looking I would be alone (charm can go a long ways).

    I wish I had though out having a family like this. My wife has a good job but we are still lower middle class. I never thought I would feel so worthless inside. Today I woke up to see my wife off to work and I cried the whole time I was in the shower. I’m a big strong man, reduced to nothing by pain and the prospects of my future. Thank pain haters, I didn’t feel awful enough before the threat of losing opioid pain care.

  38. Sara Batchelder at 1:49 pm

    Thank you so much. We desperately need doctors to be on our side vocally. It’s “nice” when a doctor tells you they’d like to help, but can’t because of the DEA. I can’t tell you how many times I’ve heard this. We need these doctors to stand with us. For now, they are throwing pain patients under the bus. It wasn’t our fault that others became addicted or diverted their meds for money or recreation. I think doctors know this – now they need to stand with us!!!

  39. Frances Hunt at 1:33 pm

    I am a Fibromyalgia patient who has been in pain since my pain meds were discontinued by my pain management physician six months ago. I want to help any way that I can. I just don’t know who to talk with, who would listen, and who would make the change in how pain patients are treated.

  40. Michelle at 1:33 pm

    I’m 45 years old I haven’t been able to work in nine years! I was approved for disability at 39 years old how sad is that, my Dr is weening me off my opiods because of the CDC he states their is a war on drugs! I am a advocate for the US Pain Foundation and I know that the CDC provides guidelines but many Drs are running scared! But what about me what about my pain and how much I’m going to suffer does any body not care about the damage that is being done to me? Pain kills it snatches ones life away it wares on your heart one can only take so much pain. I already am not able to do many things because of my pain level I have lost so much my quality of life is already diminished now taking me off all opioids what kind of life will I have? One that consists of laying in bed all day I’m already laying on my couch most of the time on a heating pad I’d rather give up my life than have my husband see me suffer and him not have a life because of me! He doesn’t deserve a broken down wife he is too good of a man he deserves better than what I can give him and I love him dearly.

  41. Deborah Fochler at 1:33 pm

    You are wonderful and we need more doctors like you. Back in 1990 I suffered multiple spinal fractures. Was actually sent home from the ER because doctor said I wasnt crying. So I did damage to my spinal cord by moving around for several days (in agony). I attempted multiple surgeries and they all failed. The last one didnt heal correctly and left me in horrible pain. After several suicide attempts, my doctor stood at my bed one day and said. “its horrible. Not going to get better but you have family who loves you and you can either lay here and feel sorry for yourself or get off your ass and live your life despite the pain.” He put me on morphine. Over the last few years, I have cut my doseage, gone back to work and never failed a drug test, never not have enough meds. Have gone out of my way to do the right thing because I know he doesnt have to give me morphine. Back in October last year my leg got numb (does it often) and I fell face first onto pavement. Had a broken nose, broken arm, broken wrist, fractured knee and for some reason they said my oxygen was dropping. They admitted me to the hospital. The doctor who admitted me told me she was going to give me “my own meds” as I had them in my purse. I was in so much pain I literally couldnt move. What she actually did was give me NO pain medicine. When I started vomiting the third day and all I could do was cry – the nurses got angry. Then I realized what she had done. They waited until she was off call and called another doctor to get me some morphine. She has placed on note on my medical record that I am addict. So when I see a new doctor it is hard because they dont know me. And my primary care doctor (I had over 30 years has retired this year). My pain specialist is in practice still. Thank God. I hope he never retires.

  42. Tim Mason at 1:31 pm

    This Doctor needs a slot on CBS/NBC/ABC and perhaps some of the tabloid shows that have put us in a class with child molesters other evil doers.

  43. Richard Oberg M.D. at 1:19 pm

    Perhaps this is some turning point in the discussion – excellent post and so far I seem to be one of the few physicians willing to speak out (and be generally ignored) by our profession.

    Everything you say here is correct. I’ve been in healthcare for 38 years (including training) and honestly, have not seeing anything as abominable as the direction and opinions of physicians most of whom should know better. We don’t treat ANY other healthcare issue like this. Physician on Kevin MD sound as ignorant as the lay press or have no experience seeing and treating pain patients yet wish to comment as if they’re a healthy bigoted lay person.

    Physicians independently like Dr. Joshi, me, my dermatologist wife, or others similar aren’t going to move the needle on this – subspecialty physician organizations can and aren’t doing it. I know for a fact they can lobby to keep physician incomes higher – why not advocate for patients for a change? It’s not going to happen unless physicians begin lobbying their respective subspecialty organizations (including the AMA though it doesn’t have much of a voice these days) to get involved and challenge the power takeover by politicians and the politician-physicians at the CDC.

    Hydrocodone manufacturing quotas (reportedly 25% but the DEA says 66%) have been cut by the DEA for next year – perhaps once this issue affects EVERY chronic pain patient we’ll get a loud enough voice to be heard and not just those who’ve already lost it.

    Thanks again Dr. Joshi – would love to have a discussion with you and you’re brave to do this. As you correctly say, our profession doesn’t approve and THAT needs to change.

  44. Mark Ibsen at 1:19 pm

    Thank you Dr J.
    Great article.
    More docs need to unify
    And
    Advocate.

    Here is my letter to Tom Frieden at CDC:

    6425 Head Lane
    Helena MT 59602

    October 18, 2016

    The Honorable Thomas Frieden, M.D., MPH
    Director
    Centers for Disease Control and Prevention
    1600 Clifton Road
    Atlanta, GA 30329-4027
    Delivered via email: tomfrieden@cdc.gov

    Dear Dr. Frieden;

    As a fellow physician I treat people experiencing chronic intractable pain each and every day in Montana. With 100 million Americans in chronic pain, one-third of the US population (33%), chronic pain impacts more Americans than cancer, diabetes and heart disease collectively. Financially speaking, pain costs our nation between $560 and $635 Billion dollars annually; not just in healthcare costs, but in lost wages, decreased productivity when they are able to be at work, and in disability pay. Think about what our country could do with that amount of money if we addressed this monster of pain.

    Even with this one-hundred-million people in pain, only six-million are addicted to these pain pills, that is a low six percent addiction rate. The War on Drugs has failed dismally. It’s now become a war on people – vulnerable people including our honored veterans. Patients have come to be viewed as criminals, and the government dictating to doctors how we should prescribe. Regrettably approximately 16,000 patients per year die due to prescription drug overdose; .0001% of our population. These are not pain patients. These are people who obtained these medications illegally. Many of these pills are in fact counterfeit and imported into our country having nothing to do with doctors legitimate and legal prescribing habits.

    My idea would certainly curtail prescription drug abuse. I would require a marker which can be detected in toxicology studies to be placed on all manufactured pain pills and to use that identifier to trace prescriptions. We have the technology to do this, we just don’t have the political will. We track everything: Ebola, Zika virus, tuberculosis and HIV. Our country uses fingerprints, VIN numbers, bullet rifling patterns, and even lot numbers on food and other items. We can certainly trace our prescriptions from sources. Let’s track pain pills. Why not? This is now a murder investigation, is it not? We trace bullets and other fingerprints. Let’s give a fingerprint to every pharmaceutical, and let’s declare the War on Drugs over. It. Has. Failed. It has become a war on people, vulnerable people. It has failed every party it was intended to aide.

    I am wakened from sleep with recurrent conversations in my head: Agencies, regulators, bureaucrats, “What’s your oath”? Don’t they know about “do no harm”? The ethical code you and I took to never discriminate against our patients? Is there some idea that chronic pain patients are criminals and, even if they are, that we, as physicians, should not do our best to treat them? Or by doing so that we are some kind of criminal for treating whomever comes to us with a need for compassionate care? I work for a higher power. Love ’em all and let God sort ’em out.

    The answer is not more regulations making the relationship between doctor and patient one of a police state with me testing bodily fluids to see if they’re telling me the truth. My relationship with my patients is to be one built upon trust. Requiring pharmaceutical manufacturers to place a code or marker on pills so we can then trace where illegal users of opioid medications puts the onus on law enforcement where it belongs, not on doctors or even pharmacists who are to be healthcare professionals, not health police.

    I look forward to working with you to resolve this matter together.

    Warm Regards,

    Mark Ibsen, M.D.
    markmusheribsen@gmail.com
    (406) 439-0752

    Cc: File

  45. Mary S at 1:12 pm

    All I can say is thank you Dr. Joshi. I am always hopeful, we chronic pain patients would get help from someone who seems to understand chronic pain. This is a huge issue in the medical field, the health care system really doesn’t understand chronic pain and how to deal with it. Big issue! I would like to know how can over 100 million chronic pain patients all be making things up about pain to live on medication? Not my first choice for my life! After my injury I discussed with my spine Dr. quality of life verses quantity of my life. I told him at age 33 after 2 neck surgeries, with life long nerve damage, that I would want a quality of life. We’re all going to pass away someday, but between then and now I’m living part of tolerable pain free life due to my opiate medication here in question. Opiates have be around since the beginning of time to relieve pain. I’m like everyone else, the only relief I get is from my opiate pain medication. I can function to a degree with my pain medication. I can do the dishes, shower, can’t vacuum, can’t make the beds. I couldn’t haven’t children when I got injured. So unfornatulaty I have no children, dr said I would drop my child right arm so damaged by nerve damage I was told RSD, years ago before anyone knew anything about it. Better than being in bed all day, not sleeping, can’t eat, can’t do anything, can’t find any comfort.

    I thought we lived in America, since when did we begin to live under such messed up rules.
    I feel so discrimated against because I’m a chronic pain suffer whom is disable. This country sends our soiders off to war and won’t care for them when they come home missing body parts. Think about that, something in our society is really messed up!

    I have hope with Dr. Joshi on board, maybe things might start to turn around, it only takes one to begin and hopefully other Dr’s will start to understand and follow. I’m hopeful in my heart! ❤️

  46. Patricia Phypers at 1:08 pm

    I had 10 ketamine infusions and am pleased to report that the infusions helped me. It is not a pleasant experience to go through, but the end result was worth it.
    It is unfortunate that this treatment is not more readily available.

    I am thankful that this conference is taking place and am hopeful the results will help people like me who have suffered with CRPS.

  47. Holly Clowers at 1:05 pm

    I’m a dermatologist disabled due to Ehlers-Danlos and its complications. My husband is a pathologist disabled due to psoriatic arthritis. I couldn’t agree with you more or appreciate your post more. Thank you for being willing to suffer some blows on pain patients’ behalf, especially when you are mostly alone in doing so. We’ve spoken up, but it seems our voices don’t count because we are patients and because we can no longer work. Despite the fact that giving up our careers was the hardest thing we’ve ever had to do, it has depleted our worth in the eyes of many of our colleagues, as has the fact that we suffer from pain.

    Please consider submitting your post to KevinMD, MedPage Today, and other sites where it will be seen by more physicians who desperately need exposure to something beyond the typical propaganda.

    We are afraid of what the future holds.

    Thank you again so much.

  48. Lynn Saunders at 12:28 pm

    I have chronically ill and disabled family members. The prejudice and discrimination they have suffered is unconscionable.

    The current hysteria is just a newly packaged just say no failed drug policy.

    The people this punishes are not the drug addicts, but the chronically ill patients who need medication to have any semblance of a quality of life.

  49. Cynthia at 11:52 am

    Wow, so great to see a DOCTOR stand with us. Thank you Dr. Joshi. We can’t fight this by ourselves, I don’t think. ……we need doctors onboard. It’s scary for them, but if lots of them band together, they have great power

  50. K.H. at 11:44 am

    Even as millions are already suffering, our country plans to reduce the amount of legal opiates/opioids in stock next year by 25%. It seems they are hell bent on making it virtually impossible for any of us to get any relief at all.

    The drugs we are being denied are on WHO’s list of essential medicines & proper treatment of pain is a human right written into international law. How is this happening??? Bad as it is, obviously there are plans on the horizon to make it much worse.

    Dr. Joshi, thank you for advocating for us. If all doctors were like you, I believe this might be a conversation we weren’t even having to have. If all doctors caught up in this witch hunt would stand up and refuse to let this happen to their patients, I know we would fearlessly stand with them. Thank you again Doctor.

  51. Frank B. at 11:22 am

    Dr. Joshi, yours is truly a voice in the wilderness.

    False accusations have been and are stripping us chronic pain patients of dignity and trust in our doctors and our country.

    Forced withdrawal, often with no notice, and with no medical guidance or support is making us ghastly ill and frightened knowing no matter how sick we are we can’t go to an ER because, once we tell the truth about why we are so ill, we are treated like junkies and in some cases getting no care at all.

    And, denial by doctors and by some pharmacies of access to opiate medications that have been the gold standard for easing and controlling pain for centuries, with NO alternatives, is causing immense pain and suffering for an estimated 25 to 100 million Americans who virtually overnight became criminals and low lifes who have no one to turn to for help and relief of pain so severe and relentless many of us already and no doubt many more to come reach the point at which death seems a better option that living in agony for years, for decades.

    Chronic pain patients are living in a nightmare we can’t awaken from. How in God’s name is this happening in the United States, with no loud outcry from anyone with the power to make this inhumanity stop?

    Your words made me cry, Dr. Joshi, for all of us out here alone, afraid and in pain when there is no reason we should be. Thank you and God bless you Doctor.

  52. Ewa Roy at 11:12 am

    Thank you for standing up for chronic pain patients, including myself. I know first hand how all the CDC & FDA changes have impacted not only patients, but the medical community as well. Physicians are no longer in charge of treating their patients. We are all under critical scrutiny & the government agencies continue to create more & more obstacles daily. Your support is greatly appreciated.

  53. Armin at 11:10 am

    Unfortunately, it seems our society has failed to protect the innocent
    and the vulnerable.Hopefully soon this political and social cycle of insanity
    will conclude and compassion and reason will prevail.

  54. Dan at 10:42 am

    Well said. We need more doctors that care and dont judge their patients. Who want to alleviate suffering and not cause more problems for patients and their families and someone that understands chronic pain left untreated leads to suicide, withdrawl from society, depression and a list of others. Now if others and the cdc,dea and everyone else would care like you. That we are humans and deserve a quality of life like everyone else.
    Thank you doc

  55. HJ at 10:27 am

    It is so sad.

    The other day, the thought occurred to me that when my parents are gone and wouldn’t hurt from seeing me die… then maybe I’ll just give up the fight.

    I know it’s awful to think that way. I don’t want to think that way. The current state of things leaves me with little hope.

    So what if I live with chronic pain. I can do that. As long as I have access to some form of treatment that helps me have quality of life. I’m in my late 30’s, worried about quality of life. Is that not depressing? Well, it’s reality.

    If the medical system is going to treat me like garbage, then I might as well give up.

    We absolutely need change. Now. Or suicide is going to become rampant.

    I know what’s keeping me here on this Earth. I love my family too much to hurt them. Right now, I can take pleasure in some leisure activities (which certainly aren’t usually associated with someone only in their 30’s – I don’t hike, bicycle… I enjoy nature and photography, but even that camera is getting too heavy and I don’t get out as much as I’d like).

    If I lose my medications, my life will revolve around lying in bed or shuffling around my house. Right now, I’m able to work full-time. Why should I be forced to give that up?

    Thank you for being an advocate, Dr. Joshi. Bless you for your compassion.