My Story: Why Isn’t My Pain Covered?

My Story: Why Isn’t My Pain Covered?

My chronic pain treatment has not been covered since the CDC guidelines were published.

But the reasons my pain is not covered are different. It’s because of what I am. I’m an older white female.

Let me explain.

I have arthritis all over the place, yes; and this is the most common debilitating pain problem in the United States. I’ve had knee replacement surgery; my hands have had multiple surgeries for they are awash in stage IV arthritis. My spine, hips, SI joints, hips and left knee all have arthritis.

I have gone to extraordinary lengths to protect my bones and joints from both arthritis and osteoporosis. I strength train rigorously every week—as I have for 30 years. I also upholster furniture, alone, with my hands. If you saw my hands you would never suspect I have severe arthritis.

I am a psychotherapist. I specialize in treating professionals with dual diagnoses: professionals with substance use disorders. I understand addiction pretty well. I also understand professionals pretty well. And I have to say today I am ashamed to be part of my profession. Not because I am like those that precipitate these feelings in me. Because I am not like them. I am a pain patient and my pain is not being covered and I am furious and terrified about it.

My pain is literally killing me. Not lessening my will to live. Not making me depressed or anxious. MY PAIN IS KILLING ME.

Since my pain stopped being properly treated, I have been incapacitated between 24-36 hours a week, every week. It is as though I entered a time warp. I am aging at an astonishingly rapid rate. It is abnormal. Since my pain has not been adequately treated my level of functioning has declined beyond any other experience with illness that I have had. I have not been able to do my taxes in four years! Never before have I been unable to do my taxes.

I believe that one of the reasons chronic pain patients have been vilified is so that addictions professionals can have more patients and make more money. And that they are currently doing just that at the same time they fail to properly treat pain. The greed that accompanies a human being’s willingness to lay claim to a patient and keep her in pain in treatment in order to make more money is pretty repulsive to me. But I believe that is one part of the puzzle. If I was not an addiction specialist, I probably would not believe this. Imagine how popular I am in my field.

I also believe this is happening because it makes the DEA feel like they have some sort of handle on the problem identified as increased death due to opioid use. In other words, DEA agents and other people in positions of responsibility for drug control blame treating pain patients for changing the social mores, the social tolerance of opioid use. If our society had not become so lax, we would not have all these overdoses. People would not dream of using heroin laced with fentanyl if the stigma had not been altered by treating pain patients with opioids.

And there is another reason, perhaps the most significant reason why this is happening. Two social groups that suffer from chronic pain the most are aging white females and people of lower Socio-Economic-Status. two social groups are comprised of human beings that are not wanted, not valued by our society. Aging white females and people of lower SES are getting bullied by the amendment and administration of the pain policies in the United States today.

I have spoken to physicians who treat pain and their response to my challenges is pretty interesting. Upon approaching one physician with a sterling reputation for treating pain with the questions I have about the failure to treat my pain properly (I have extenuating circumstances, by the way) and he made no effort whatever to answer my questions. He met me with bristling hostility. Now, I did not approach him in the manner I am writing this article. I approached him as a humble patient suffering with pain that I do not believe is being properly medicated. I asked questions articulately and perhaps without the level of meekness he would have liked. But he just bristled with hostility. There was no way IN THE WORLD he was going to address my points. Because he couldn’t. There is no justification for the way my pain is mismanaged. And he hated me for making that clear.

My pain is not being covered because I am an aging white female being put in my place.

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Authored by: Linda May

L.A. May is a psychotherapist who has suffered from arthritis and other painful maladies for many years.

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Ginzy

ONE MORE COMMENT ABOUT RX VS ABLATION, ETC…
I, too, have rounds of shots every 4 or 5 months or so…Last time, 4 on one side of my lower back – two weeks later, 4 on other side – 2 weeks later, 4 in my neck so numbness and pins and needles and weakness will subside..
Then, I can go get my RX.

I NEVER ABUSE, AND NEVER REFILL A 30 DAY RX IN 30 DAYS. I try my best to get at least 60 days or more out of the RX, despite my pain management Dr saying each time I can take it 3 times a day. I’d rather not if at all possible. So, definitely not abusing it.

As far as cost – OMG!!! The hospital bill alone was $35,000!!!! and that was only for a few hours in the ER – Was back home on the couch by noon. That doesn’t include my Dr. bill which is about $1,500.00 each session.

And they have to keep me semi-awake for shots in my neck because my Dr. says he MUST talk to me doing it, to insure they are in the right place so they don’t paralyze me!! OUCH!!!
And it is temporary –

So just add up quickly – Um, at least 3 visits a year in hosp for shots – over $105,000 – plus 3 rounds Dr. charges = almost $5,000 = all of this costs approx. 110,000.

Pain meds 3 or 4 times a year = approximately $150.00. They aren’t expensive.

So….WELCOME TO THE WORLD OF MEDICINE.

SHOTS IN HOSPITAL AND DR. COSTS – $110,000
AND POSSIBLE PARALYZING INJURIES FROM PROCEDURE

PAIN MEDS – $150.00
OTHER MEDS FOR SPASMS = 2 TIMES YRS – $40.000
TOTAL MEDICATION COSTS FOR YEAR- APPROX. = LESS THAN $200.00

WHAT!!!!!!

Ginzy

FOR THOSE THAT DON’T UNERSTAND CHRONIC PAIN, NO MATTER WHAT THE LEVEL – This is the analogy my pain management specialist gave me, when I asked why it kept hurting so much..His response:

Think of a drop of water…when it hits your hand, you brush it away, and think nothing of it..Then remember what water torture is, and how debilitating it is. Even your strong and powerful people buckled under water torture – drop by drop on your head – So, instead of being a harmless drop of water, it is the constant drip of water that eventually irritates and can inflame your nerve endings, which in turn, amplifies whatever is going on already. In other words, chronic pain, adds to, and, increases your pain. A small pain can easily turn into a larger unmanageable pain when it is there 24/7.Your body breaks down – Your nerve endings become so sensitive, and then THE PAIN BECOMES UNBEARABLE.

Don’t understand yet? OK…Think about getting a flu shot – We hate them. They make us uncomfortable for 10 seconds. Now, take that discomfort and try, even TRY to see how you would feel if that small discomfort NEVER went away and was there day after day..hour after hour, minute after minute.Then come back and tell us how you feel. You can’t? Only those in chronic pain can tell you how debilitating it is. How you are barely able to make it thru the day, no escape from the pain, except a pill that helps a little. DOESN’T TAKE IT AWAY, BUT LOWERS THE PAIN TO MAKE IT LIVEABLE. Now, picture every day like that, and every move you make amplifies it..Now go home and try & cook and feed your family..OOPS – Do laundry. OOPS..Read to them…OOPS – Go play catch. TELL YOURSELF “I WILL JUST WAIT UNTIL THE PAIN GOES AWAY.” IT DOESN’T…IT GOES ON AND ON..NO LET UP..NO VACATION FROM PAIN. Now go live your life.

Sue

I am also a chronic pain patient, suffering from a form of muscular dystrophy and born with orthopedic abnormalities of my feet and hip sockets. I am 63 years old female. I now have Stave IV vascular necrosis in my right hip and am in excruciating pain. I have been in pain management for two years. During those years, I have agreed to every single “intervention” they suggested, primarily shots. I’ve also had RF ablation. I had spine surgery three years ago at the L4-L5 level for collapsed disc which did not stop the pain. The only pain meds I have been given is from my primary care doctor of two Tylenol 3 per day. That’s it. I told pain management that I can no longer cope with just two T3 per day in this sort of pain. They said that they are an “interventional” pain management practice and will NOT prescribe meds unless a patient is also taking their interventions. This sounds a lot like medical blackmail. And a money making shot mill scam. But this is the widespread practice today in the U.S. among most pain management practices.

When I first went into pain management, I was so happy because I thought I’d finally get some stronger pain meds at least something stronger than Tylenol 3. In fact, at my first appointment with pain management, they expressed surprise that with my pain issues, all I was taking was T3. And then they proceeded to tell me that I had to try all these various shots. Which I did. But at no time did they ever offer me anything stronger for pain relief.

When my hip pain became excruciating I asked them for stronger meds, which they refused, again reiterating that they are “interventional” only. They suggested that I take Gabapentin which is being handed out like CANDY in pain management. I told them that I had been prescribed this horrible drug years ago and would not take it due to severe side effects and zero pain relief. I told them I would not do any more shots, since they did not work. Horrible!

Mary W.

To Margaret et al – Naproxen has the potential to cause upper Gastrointestinal bleeding.

To Linda May: next “consult” with a pain management clinician, identify all of your root cause(s) for osteoarthritis, etc. based on your diagnosis/ treatment history and tie each Dx to the Social Security Admin’s BLUEBOOK of problems. That is the scientific way. I read your post twice: you might feel victimized, but if you stick to the clinical facts and your degenerative condition(s)? You will hit a strong nerve.

And trust me….you do not want to develop intestinal bleeding from Rx’d NSAID meds. NSAID medication is worse on the body than opioid meds. Good luck!

Margaret

In my opinion if you keep people out of as much pain as possible they will move they will get up and they will live their lives. But when you cut off their pain medications they end up sitting in the chair in front of the TV or reading a book all day long cuz they’re in too much pain therefore they get weaker, they are unmotivated, they put on weight, their health starts to fail rapidly and before you know it they’re going to be in full-time nursing care either at home or an assisted living. Many of us took our medication is prescribed and lived full lives physically and mentally and productively. Now they take you off everything. And when I asked if I could go see a pain medication doctor from my primary care doctor he said they won’t give you anything at least I’m giving you a little something Naproxen seriously.

Rosalind Rivera

To the gentleman speaking of the noticeable increase of drugs coming into the US, please note that the Us looks the other way. In fact it is not profitable to prosecute drug trafficking. The government gains monetarily from these drugs. Dirty cops keep much of these drugs not only for their personal use but also to sell themselves. The US government gets a huge amount of kickback from countries bringing in these drugs. Don’t be naive. Get smart! Get wise! Know whats really going on!

Rosalind Rivera

Excellent dissection of the pain management community. I have another example. My doctor first insists that I have trigger shots which help my chronic and intractable pain until I leave his office to get in my car to go home. Next he insists that in two weeks I must have the nerve blocks which help for about two days and then finally about four weeks later he performs the Ablation, on one side of either my neck or lower back. I then must wait two weeks for him to do the other side. This does bring a level of relief for about four months in whichever area the Ablation has been done. My other area of pain has meanwhile been ignored. Now I must wait six months before I have to go through the same routine before the other area is addressed and of course I must go through the exact same steps before I can have the Ablation done. What it all comes down to is that while I have a minimal level of relief in my lower back, my neck is on fire with excruciating pain. Six months later when my neck is addressed my lower back has me thinking suicidal thoughts. I have explained to him many, many times that the trigger shots and nerve blocks have absolutely no impact on my pain however he insists that these are steps that he must take. I have also asked him why my neck and lower back cannot have the Ablations done each after a two week interval as he claims that each side of whatever part he is addressing must take. His reply is that it cannot be done, insurance statues and such. I have contacted my insurance about both of these two issues and have been informed by several reps that I need not go through the prior two treatments if they do not help but that the doctor can do the Ablation from the beginning as well as doing both my neck and lower back in succession without waiting the sixth month interval. My take? MONEY! Doctors just not only want to keep their patients in pain as the author states but that’s also where the money is!

Gary Hopson

I believe that people of low income status are more likely to be denied relief from chronic pain because the doctor thinks that they are also not educated enough to understand what’s going on.

Mary W.

It is a national tragedy to impose physical suffering on patients with acute, chronic and post-op pain by denying them opioid medication. Truly.

AKASMOKEY

Im a white male,53. I have arachnoiditis, osteo, stenosis, neurapathy, failed back surgery, and on and on. Im not a woman so why are my pain meds being weaned off? Women arent the only ones dealing with lack of pain meds! Im getting less than half of what i was getting, had to go through severe withdrawals and cant do near what i used to do. I dont know the answer but something needs to be done.

Signe

To all my pain warriors. Fight back! Go to Rallys, write congressman, senators, president and join Dont Punish Pain online. When my doctor tried to lower my meds my daughter and I downloaded every article we could find including CDCs new guidelines. We highlighted important facts and literally read to my doctor. Kaiser had a huge cattle call on pain patients two weeks ago. Each patient had to see a “so called” professional pharmacist who told all pain patients he was recommended opiates to be cut. I figured it out when in the lobby I spoke to other pain patients. From my doctors mouth she said Kaiser was losing money and was finding ways to cut costs. Kaiser Permanente is throwing Chronic pain patients under the bus to save money!
Fight warriors, even if bed ridden. On good days join site to see what you can due. I know, I’m sick too. But get help from friend or family and contribute.
Long story short, I fought the system and my Doctor filled my meds…for now. God Bless.

Cindy too

To the person who suggested going to Canada for pain meds — Sorry, but Canada has a war on opioids just like the US does. CPP’s there suffer just like we do.
I believe that other countries are sane on this issue, but I don’t know which ones.
But I do know about Canada, and was really surprised when I learned about it.

Elizabeth Caldwell Kerns

This has become so common in my case also and my physician will not discuss why she keeps cutting my pain meds with me either. I am 64 and have congenital bilateral hip dysplasia and since age 45 have had 7 hip surgeries and 30 hip dislocations and also have spinal stenosis with a 50% curvature of my spine. I had been treated adequately for pain and was able to resume excersizing and doing light housework, which was FANTASTIC since l had become disabled from my RN job at age 49. Abruptly my meds were severely and steadily reduced that resulted in those activities that kept me healthy mentally and physically strong are now unattainable to me. I have discussed my thoughts of suicide due to chronic pain with my husband and adult children and if l get cut completely off my meds this is something l am prepared to do. I have a wonderful and privileged life but if l have to suffer in pain l will not just exist laying in bed with cold and hot pads and lidocaine patches! Thanks for listening.

Mark Adams

Don’t know about the female side but this is exactly what happened to me. Male 52 injured at work Had some quality of life then poof chair ridden the same response from every pain doc I have seen They are terrified of the DEA and we are dying because of it(lost 15 lbs of muscle 145-130 in under 2 years even if it was reversed my life has already been shortened by inability to exercise

Dear Linda, my sister in pain,

I hear you loud and clear, I feel exactly the same way. If this was a men’s issue, common around age 60, it would be covered.

I am beginning to mourn my former life. I’m slowly drifting out to sea and nobody gives a crap. I doubt I make it to 70…

I used to bowl. I didn’t have to take my walker in, they let me order a kid’s weight ball, and once a week I had fun and felt normal. It took a little extra pain medicine. No big deal. I also went to the gym with my husband. We traveled a tiny bit and I was able to cook 4 nights/week. Since the DEA crackdown I’ve had to wean off almost all of my pain meds. I now stay in bed, sitting up, until about 2. i have enough pain pills to last till around 9. That’s it.Husband seldom gets my cooking. He just had his 3rd stoke so he can no longer care for me.

My stenosis, neuropathy, and arthritis have steadily gotten worse, and I have Osteoporosis and keep breaking bones. Broken bone, NO PAINMEDS, surgery, 3 major surgeries (2 liver, one back) NOPAIN CONTROL.

This whole situation blows my mind!! I can’t comprehend it.

I hope you have some happy days ahead that will make it easier to get through the bad days.

Patti May, San Diego

Bren

As an aging white male my doctor prescribes me pain meds but is getting old and I have no idea when he may retire. In the office where he works he’s the only one who will prescribe opioid. I’m worried that on the level at what I’m talking that when he does retire I will go into severe withdrawals…I’ve been through them before and it’s almost not something I would want to live through again! What do I do?

To Kathleen Frankforter—Hi Kathleen, I don’t know where in SoCal that you live in, but I am in San Diego. The official policy at Univ of Calif San Diego doctors is no pain meds provided. I’ve had to wean off almost all of pain medication, despite having worsening back, neuropathy, and arthritis issues. I stay sitting or sleeping until about 2 everyday. That gives me enough pain pills to last until about 10pm.

I used to bowl and go to the gym regularly. I’d go to physical therapy but they just increased my copay from $15 to $40, that’s $80-120 a week! I just can’t afford that.

If you are near San Diego can you message me your pain management doctors (if you do not mind)… (patti_may@yahoo.com). Thank you. If you’d rather not, I understand.

Michelle

Aa an aging white female in pain, I concur with everything in this article. 😔

Laura

The patronizing, dismissive, contemptuous misogyny I’ve experienced from doctors has been unbelievable. I had a red flag emergency called cauda equina syndrome after what was supposed to be a straight forward spinal laminectomy. I repeatedly listed every symptom in the book including off the chart pain. The surgeon told me that he wouldn’t give me any more pain medication and to stop wasting his time. He left me helpless in a hospital bed shaking and crying from pain and no one did anything to help me. Another surgeon repeatedly ignored or dismissed everything I said and just kept telling me to smile so I’d look pretty. No, I’m not making this up. I was 43 years old but I think for men like that, any woman over 25 is worthless trash. Because of what they did, I’ve been left with nerve damage in my right leg and all sorts of other issues and am now permanently disabled.

Since all this happened, I’ve been yelled at, slut shamed, repeatedly called a waste of time, told that everything I’d just said was all in my head and I was making it all up. They started telling me to ‘get over it already’ two days after they did this to me and treated me like absolute trash when I dared get upset over a devastating diagnosis. They put me on Lyrica and then completely ignored the terrible side effects I experienced including becoming manic and full blown suicidal. I’ve learned that doctors have nothing but utter contempt for me. I will never trust any of them ever again and I hate every last one of them.

Well…I’am the same…aging white female…forced into retirement (disability) and leaving a profession I loved but took a toll on my body!!
I was a ER RN for 26 years!! I’m now being treated like a lunatic and addict in a field I worked in!!! My doctors have been my doctors for 15+ years and now I’m not understood and humiliated…it is not fair!! I, like you, refuse to give up but…because I can’t get the appropriate treatment either due to insurance not paying for what works OR needing opioids, which insurance won’t pay for it wants me off of!!! This is simple insanity that even a middle schooler could see!!! What do we do…I’m damned if I do and damned if I don’t do meanwhile I’m 57, a trained RN…disabled…a place I NEVER thought I would be!!
THANK YOU SO much for having the guts to go against the community you work in!!! We keep fighting and maybe things will change! Blessings, Stacy Hewitt

Janice

After going to bed last Friday night n having listened to bill makers scathing rebuke about white people wanking over being white I thought once again how I have been treated like many . To see this article gives me hope to know I’m not imagining the discrimination I’m subjected to , but sadness as well for the suffering . To know nothing is getting better only worse. And there’s no one , nothing can be done . Stuck . Abandoned in a painful abyss. Thank you for your article , at least I know . I just want all of this to stop all the unjust horrible behavior of those given ” authority” who do not know what they do. We are at the mercy of the stupid inept . The only hope I see is to resign to accept the end of life for me not the hope of life and the abality of being self sufficient. Friends family go away because they can’t stand the pain n problems you suffer from the medical profession is a joke. Those in charge don’t know what they are doing n won’t listen to reason. . … That’s just how it is.
I didn’t make it this way . …….
But shame on everyone who had their part in causing what has happened to ever so many pain patients . From the bad policy’s to the bull [edit] doctors to pharmacists to pain mngt dr’s to insurance companies to that piece of [edit] president trump that stupid stupid liar uses his executive orders to rioll back issues on climate change but not once has he thought about the citizens of America . Not once . He’s so busy talking to hear himself talk about himself. There’s no hope . Especially for single older white women .

Also having a PPO insurance is a gold mine 4 pain management so it wouldn’t have anything to do with that BC ppos usually you have to pay out co-pays, a high deductible. I would definitely say it’s more your job / being white female. Sounds like all your diagnosis is would fit into their criteria of being accepted. Unless your doctor wrote ugly notes about you that you don’t know. That seems to be a big Trend with Physicians in any specialty if a person needs to use of opiates for pain management. Pcps don’t want to refer to pain management are the use of opiates, no connection, hands-off approach.

Most likely the reason your pain was not treated is BC of your profession & like you said you being white. P.M do not really want people in your profession or lawyers or anyone that has a high degree BC they don’t want you to figure out what’s going on behind the scenes basically you make them nervous. For the people that said that it has nothing to do w/ race have not been reading many articles. Women have 5× the rate of autoimmune diseases
ect, then man. Articles say middle class white women & the poor white women r more likely to use opiates than men. So there is a biased & they also have us Corner & pigeon-holed by writing out these studies satistics. Now it’s men usually teens to 30 yrs of any color that overdose. And a bias for blacks to not get treatment at all. Look up numerous satistics articles. Women have a Target on their back whether they be of any race for the use of opiates BC we have 5 x more health issues than men & there are more men Physicians then women so there is a bias there & the women that are P.M are just going along with her Conrad’s to fit in or wrk as a N.P for a male P.M Dr. Yes the pain is killing me as well. I’m so sorry for you.

Karen

This post describes my situation perfectly. My heart is with you. I was a Social Worker for many years, never had physical issues till several years ago-then long story short can no longer work and attempt to get thru pain filled days and nights the best way possible. I tried every pain management treatment with NO relief. Finally brought in questions to discuss and the Dr. flat out said listen you have taken up enough time if you want to cease treatment that’s up to you! My questions had been about 2 issues in which they had not even reviewed records sent to them from others specialists! It’s criminal the way these clinics operate!

Toni

I totally agree with this 100% and feel EXACTLY the same way! I have no more hope for any help and as I get worse and worse thinking of a future where all I do is try to hang on each day even more than I have to now is awful! It is slowly killing me! Really took the words out of my head. Tired of drs treating me like [edit] and just gave up. We should not have to live this way but our own govt has not given us a choice. They actually have encouraged people to go to street drugs just for any pain help now they are so stupid! We have been left out of treatments and any disability help. Most women cant receive any w/o going through a ridiculous amt of testing which is way too expensive if you aren’t on disability even than you must have a very low household income to even quality if you have raised your own kids for more than 5 years and been a stay at home Mom! $370 copay for an mri that only covered 1/3 of my spine is pathetic. This entire situation is pathetic and I was the victim of a drunk driver hit & run but somehow drs treat me like it’s my fault? I am furious too!

Pam Molnar

There is a NATIONWIDE protest OCT 16TH go to the Dontpunishpainrally.com page for all info and see where your states protest is being held. #SILENTNOMORE #SPEAKUP #PATIENTSNOTADDICTS #patientright #INHUMANE #GENOCIDE #DontPunishPainRally #ViolationofaNation #SuicideDueToPain #sickofsuffering

Pam Molnar

I suffer from multiple debilitating incurable diseases such as CRPS,RSD, severe stenosis, osteoarthritis, neuropathy, radiculopathy, Degenerative disc disease, cervical disc degeneration, fibromyalgia, three herniated discs, cholecystitis, two failed spinal fusions that left me with severe nerve damage. gave been thru all alternative treatments MY BODY could take and left me thousands in debt! LIFESAVING PAIN MEDICATION was my last resort. Once we found what worked for me as I am a rapid metabolizer, I had a QUALITY OF LIFE! I was able to PARTICIPATE IN LIFE, BE A MOM TO MY KIDS, COOK MEALS, CLEAN MY HOME, TAKE WALKS WITH MY DOG, SHOWER DAILY, VOLUNTEER, AND SINCE THE CDC CORRUPT GUIDELINES MY DR OF TEN YEARS ABANDONED ME!!!! I was on the SAME STABLE DOSE FOR EIGHT YEARS WITH SUCCESS! I went in for my monthly pm visit and within five minutes had my world turned upside down. He sat there with his back to me telling me since Christie put even further restrictions on prescribing, he no longer is treating pain pts and that his license was more important!! I sat there crying uncontrollably, telling him he put me in a bad position and what would he like me to do knowing dam well drs are NOT taking pain pts, he just shrugged his shoulders as if to say it’s not his problem, handed me my last scripts that he cut way back and sent me on my way. No weaning, no slow taper no nothing!! I dont know how I even made it home as I was having a really bad anxiety attack. I’m in NJ. I had called all over NJ and was treated like a drug addict by nearly every place I called. I waa told horrible things by people who never met me or seen by twenty years worth of medical records! I was turned away from the ER, but not before they treated me like a pill seeker and told me to go to rehab!!!. I am so effin sick and tired of the NEGLECT, ABUSE, STIGMATIZATION, DISCRIMINATION OF INNOCENT LAW ABIDING CHRONICALLY ILL CITIZENS/VETS AND OUR DRS!!

Kathleen Frankforter

Linda: It has nothing to do with being a white aging female. I am 66 yrs old and white. I live in Southern California. I just recently switched to a new pain mgmt doctor but not because of the color of my skin. That is just ridiculous. I have been on a potent pain medication since 2004. I am what you call a complex pain patient. I am a PPO as my husband is younger and we have been married for 32 yrs I might add. I also have my Medicare. I think what is happening has to do with Medicare/Medicaid. This is my personal belief.

I have not had one bad interaction with any doctors when they find out I am on a pain patch. The latter part of 2018 I was real sick – in and out of hospital until I finally had surgery on Jan. 8, 2019. I was up front with the Anesthesiologist about being on Fentanyl all these years. She looked at me said, “No worries, I see your medical history here and it is understandable” Her only concern was making sure I was relaxed and she took great care of me. I was always upfront with all doctors who treated me with respect.

I think he has a lot to do with me living in Southern California as well. It’s a different ballgame here. Perhaps being a PPO matters – I don’t know. But has nothing to do with color of our skin or being rich vs poor. We need to get the GOVERNMENT out of our doctors offices. They know us best.

I will never forget walking into my Internist’s office back in 2017 and she said to me she could no longer prescribe my medication and had to send me to pain mgmt doc. She said DEA was hounding her and was NOT about to lose her medical license even though she knew I was a good patient. She knew.

My ex pain mgmt doctor’s office was always filled with African Americans n they were all so kind. I would guess they were Medicaid/Medicare and were in pain. I don’t think ppl realize that African Americans deal with a lot of pain as well. We always talked – there was no bias among us – we were all in pain.

Victoria Ahrendsen

I am beyond angry at what you’ve written in your post. This is just ridiculous & it must stop. You do not deserve to live in agony. I wish the best for you, Sweetheart. And, I promise to continue in my efforts for all of us to be heard.

Fed Up

Linda, may I ask your age? Not to pry, just to compare with my wife’s situation (she’s 56). Thanks in advance.

Alice

I feel your frustration. Not only am I getting the same treatment I also experienced this when I first collapsed, became bedridden and disabled at the age of 38 by doctors and by the disability system. So many people in charge of making the decisions, I feel, do not truly understand what Chronic Pain is. Unless you have experienced it you really can not fully comprehend it. If there was only a way for them to experience it first hand maybe then there would be real change made at All levels.

Diane Rosen

Please don’t give up searching for a good doctor that will treat your pain. A really good book that helped me before I found a good pain doctor, is “Rose from Brier” by Amy Carmichael. May God bless and keep you, you are in my prayers.

Gosh I’m 66 an have problems like yours . I can not stand how the doctors humiliate or look at me in a benign manner .
I have got angry an it’s gone in my chart for all other doctors to see . I to look d them they were not doctors as a good doctor would have compassion . I hate the ones who March out of medical school without any understanding of patients
They all are on the same agenda , they all listened to the same lectures an have no original ,or empathic thoughts towards us they’re brainwashed .
I’ve been buying my norco on the street for 2 years . That cost me a lot an it’s illegal . I like all of us haven’t abused these drugs . Let those idiots set in a pain clinic for 3 hrs a month an be treated like dirt
I’ve had it . It’s got to change . Thank Donald Trump whose dear brother died of alcohol an drugs . So you know where Donald’s coming from . He didnt help our case with his tunnel vision .

I think you touched on the right points! Yes there is a bias, but even stronger is the desire for the addiction industry to ‘have their day in the sun’. You are actually not alone in the addiction community, in fact, many of our organizations biggest SILENT allies are in the addiction treatment industry. The reason many of them stay silent is because they enjoy benefiting from the increased funding. They tell us they feel trapped, that they want to scream out that not treating pain is causing more problems and death, but then they see how many extra patients a few billion dollars could help. I have asked them all to at least promise to speak out once they realize they are not actually benefiting from them money. We do have a few who are beginning to see and speak out, either their conscious got them or they finally realized the money is all for the politicians!

Tabitha shileds

We need the Chronic Pain Patients Protection Act. This article is heart breaking But we are all professionals , let’s unite and get our government to protect us . Why are we just writing heart breaking articles . We have rights

Victim left suffering...

Hello,

You are no different than the rest of the pain population. Profiteering is the only name of the game for CBT, back drill non FDA ESI’s, accupuncture, mindfulness, invasive SCI procedures that cost 60,000+ and 3rd party insurers reimburse quite well for this. Never mind the FDA was finally FORCED to disclose medical device harm stats and 750+ ppl in pain who underwent SCI’s ended up being paraplegics, AND now many of these ppl have been sentenced to a lifetime of MORE pain. Many pts have been ” forced” off long standing ( often decades) successful usage of opiates and told by GP’s, PM Clinicians well experienced and Bd certified in PM, ” No more opiates, get your referral here for SCI, go for back drills, surgery that will not help them and oddly enough, until cdc ” guidelines TO GP’S” ( NOT PM Clinicians), surgery had been frank contraindications. How about that?
Cpps have been told best thing they can do is say they’re an ADDICT, they’ll get Meth treatment MAT long term that contain an opiate. Nothing but bull.

EVERYbody in any serious pain, post op, acute severe , intractable long term CP, visceral, neuropathic, musculoskeletal, whatever…suddenly has some psychobabble baloney label: A SUD, OUD, and the latest, “CODP.” Overwhelmingly,
shrinks believe everybody suffering in the hell of physical pain from overt diagnoses confirmed by countless diagnostics and PE, countless medical specialists suddenly has PTSD, has been ” abused” from childhood, has some genetic brain disorder and starves opiates, could NOT possibly have PAIN!

Millions of ppl suffering in physical pain due to horriffic diseases are eloquent speakers, writers, communicators. They’ve been hung out to dry. All are judged, juried and nothing but recreational drug ” addicts.” Crockery.

Huge point: The ppl dying from OD’s from illicit opiates, coke, meth, typically have been found to have between 5-7 substances in toxi reports–IF 1 is a scripted, its recorded as an “OPIATE OD.”

Kathy

Cindy, you are race baiting. She is describing herself, not being racist. Always bringing up racism that sullies what is really being discussed

Kathy

This country is communist, Socialist. I would like to get my meds elsewhere somehow. Go to Canada to a doctor and get around these fascists

Kathy

If you are prescribed something for chronic pain that really works and also makes you feel good, gives you the strength to do your job, they say you are a bad person, dope fiend and you’re cut off. Not Fentanyl, not Oxycontin or Placidil, just Norco. You can suffer with nothing for pain, miserable go to a living hell.

Stephen Powers

Linda – this is as wrong as it gets. I look at Randolph County mugshots where I live and it’s totally shocking. So many young people busted for selling Heroin, caught with Heroin – Meth too, plus other drugs. The DEA has not even put a dent or scratch in the hard drugs coming in from the Drug Cartel, China threw dark web were people can buy it so easy and this includes prescription pills. Our government, CDC, DEA go after true pain patients plus put pure fear in doctors. I have watched several documentaries on how bad these hard drugs are coming in this country – it is a massive scale too, tons come in our country every day. I live in a city of around 26,000 people and the whole county is over 100,000 people. The people in the mugshots look so aged, sores all over their faces – same ones get arrested for drugs, selling them, stealing to buy drug and they just keep going threw the court system – I do not understand why the court keeps ,letting these same people keep doing this over and over. My nephew is one of them plus a 2nd cousin. My nephew did go to prison after 15 years of selling and using drugs, my 2nd cousin got 3 years but served 3 months and he has stolen more stuff than anyone I know of. He was in mugshots just 2 months ago again for stealing to buy drugs. Our government, CDC and DEA have this whole drug problem wrong – they do the wrong thing by hurting real pain patients so they will look good as if their putting a stop to this major illegal drug problem America has. I’m angry about it as the letters I have read plus yours. I have had 5 spine surgeries, 3 fusions – fused C2 to T2 and can’t turn head and it’s so painful plus major low back fusion, it all came from a drunk driver and the court system are not cracking down on them either.
Linda my heart goes out to you and hope you find a great pain management doctor like I have. You have my prayers.

Lady

Ok filling out this field

Lady

Geez if you are really treated all this “professional patients” why haven’t you got one of them to prescribe for you? Like don’t hate the player, hate the game. Surely one would swap a script for a positive treatment statement ect, your not playing well

DBS

I very much related to this article when you said your pain is killing you. Every day I get less active and gain more weight. I am not going to die from the measly amount of opioids I am given. I am going to die at a young age because of not being treated appropriately for pain and my health going downhill. I can look in the mirror and see how much I have aged in just a few years since I “got” fibromyalgia. My husband and I no longer socialize with people. We don’t do fun family things like we used to. He is getting older too. We both manage to make ourselves go to work, and we are home after that, even on weekends. I’ve even begun using a food delivery service because going to the grocery store is utterly exhausting. My house is a constant mess.

I also agree that there is a stigma to taking pain pills. My son thinks I am a drug addict. That’s what they are being taught in school nowadays. Those who have legitimate pain cannot get help, but there are places being built for heroin addicts, and they are given free needles. Marijuana is also being legalized around the U.S. In addition, there’s a ton of money to be made for the places popping up everywhere to treat “opioid addiction.” The government plays word games — with many terms. But a popular one right now is “opiod.” Come on, the real problem is heroin. I never heat my pain med in a spoon (and add it to heroin).

I can’t speak to whether or not the color of my skin (white) has anything to do with my treatment, but it’s very depressing to think this is what the rest of my life looks like — or worse as I get older and, I’m sure, have more pain.

Thanks for your article and thanks for listening. When I try to discuss these issues with my family, they roll their eyes and don’t want to hear it.

Linda-Lee Manley

Miss Linda May, I’m so sorry you have these obstacles to Joy because you seem like a good person and I agree with your perception of your treatment because of being an aging white female. It has become abundantly clear to me this past two years since the CDC guidelines, (not based on anything factual ) my doctor at the time took much effort to acquire data and presented to the hearing when all this started and after his lecture was done he was told ..” that’s really good information we thank you for coming but…and here it comes… “But we can’t use any of that we’ve been told to just listen to what you say but it’s not going to change the CDC decision” I say there’s more going on here there is a struggle for power by entities over money….I”ve been in pain since the day I was born… later in life I was having one too many ER visits after going into shock so I was forced return to the profession that caused my injury and they had nothing to offer me except pills… I was not met with options for acupuncture or anything non-invasive I practice yoga that’s why I have any body control at all which they laughed at BTW… I have this prediction for them they’re going to feel shamed when they pass from this life and their energy is judged …they don’t look through your pockets ….I know I’ve been there… Yes I’ve died from the pain but was sent back what fun…. and one thing I know so very true this opioid Scare things is not new it’s been going on ..is it now just because Barbie and Ken’s children are being affected that we have this nonsens?

Linda, I disagree with your overall conclusion but admire your understanding of the Bristling Doctor. Absolutely there are doctors who get angry at the patients who remind them that they don’t know very much. We must be blamed somehow, for our maladies, else the doctor realizes that his knowledge has limits. Great sniffing that out!

Where we disagree, Linda, is on your premise. You began by assuming that someone in our society has actual responsibility to keep it running, then ask how a failure could leave you abandoned and without options to treat yourself.

The reality is that we are a self governing society and no one is in charge of making it function. It’s up to us to govern ourselves better, because we get exactly what we consider passable work, from our public officials. If Senator Manchin puts his daughter to work as an executive of a generic Suboxone company and tries to get laws passed forcing people to buy expensive toxic Suboxone rather than cheap natural poppy extracts; and puts Andrew Kolodny up on a pedestal as the supposed genius who will rewire our brains with Suboxone and make them Addiction Proof, we are accepting that offensive conduct by not impeaching him from public office, or at least voting him out at the next election.

We get exactly what we tolerate.

Senator Manchin is immune from most lawsuits but his daughter certainly is not. She needs to be sued for the damage her company is doing to patients, by using her influence over her father to get bad laws passed that wrongfully enrich her company.

R Rust

U should try buprenorphin

Karen A. Stacy

Fellow Warriors! We can fight this at the 2020 election. Boomer strong👊🏻

Barb

I recently read a book called “Doing Harm”, by Maya Dusenbery, published in 2018, about how women are treated differently by medical providers. It’s an important read for anyone affected by these issues.

Brenda

This is good article. I am also older. I believe the DEA wth all their doctors education (lol) are actually trying to get ppl to take their own lives because of pain to reduce the population. Thank u, brenda pitts bennett

No rights in America

Dear Linda you are so right. I’m a permanently disabled 58 year old who has always paid my taxes never broke any laws and always vote. I think your theory on the making of money and people in the DEA failing at their jobs is the root of a lot of this [edit]. But I’m going too take it one step farther I have done some figuring as too what the US government and fat cats could do with the money that they would save by killing us knocking us off would be billions in savings that they could use too fund their personal financial agendas and greed I also have been puzzled by organizations that are supposed too fight for human right like the ACLU. I will never give them another dime I used too think and admire them but they are now crap too they will fight for illegal immigrants over US born citizens and every other cause but us Im wondering what they have been promised by the corrupt US government or do they not feel we should have rights too ARE THEY DISCRIMINATORS THEMSELVES???????? I give little hope that many of these people who are selling themselves for greed because they think they know it all will ever get it unless they become like us then they will get it only when it effects them because then it will be poor them. I personally have had a problem with American politicians for a long time partly because of what has caused me too be permanently disabled mine has happened because the US government really does not care or protect me from DUI drivers who hit me made me permanently disabled having their fun drinking they did not have enough insurance too even pay the damages they have caused me and not one lost their license JUST LIKE THE SELFISH STREET ADDICTS THEY HAVE MORE RIGHTS THEN ME WHEN IVE DONE NOTHING WRONG AND NOW THE US GOVERNMENT ISNT OK WITH ME RECEIVING THE MEDICAL CARE I NEED WHAT A JOKE THEIR REALLY AFRAID IM GOING TOO OD ON MEDICATIONS BUT ITS PERFECTLY FINE THAT DRUNK DRIVERS CAN KILL ME with no penalty for their actions screw the US