Opinion: I Don’t Deserve This

Opinion: I Don’t Deserve This

By Suzanne Stewart.

Going to the doctor’s office has never been one of my favorite things to do. When I was 5 years old, I filled my suitcase and “ran away” because I was afraid to get my Kindergarten vaccines. Now, I’m all grown up and looking forward to retirement; but I’m still that 5-year-old deep down inside, more afraid of doctors than ever before. Why do they have so much power over me?

Each time I have to visit the pain Dr.’s office, I get physically ill, worse than usual. A few days prior to my appointment, I get more frequent stomach aches. I get more clingy to home and all things comfortable to me. A fear deep inside of me grows worse and worse. When the morning of the appointment comes. I get nausea, dry mouth, diarrhea and I don’t want to leave my house.

Suzanne Stewart

I really trust and like my pain Dr. too, don’t get me wrong. But I know he’s not my “friend”. He has heard every excuse in the “book”. All day long other people have ruined it for the “good patients” who don’t deserve this kind of questioning, contracts and treatment.

It’s time to leave the house. But I cannot leave the bathroom. I take a bucket with me because I don’t want to vomit in the car. It’s a 30-minute drive and my painful RSD/CRPS feet are shaking even though they hurt. I cannot control it. My husband chuckles, kindly telling me that I’m “shaking the entire car”.

We sign in at the front desk. I answer the several questions that I am asked every 30 days now. It’s just too often to put people through this, aside from the cost.  My name is called and my stomach is in knots.  I’m sweating and sick to my stomach with my heart is pounding. I feel afraid and “guilty”.

The pain Dr. enters the room and asks me the same questions each month. Every 30 days, the same dialogue.  But this day I hear different mantra than usual. I feel as though I’m in a tunnel as I hear these words “Your urine test came back positive and I had to send it out to another lab.  In case you wonder when you receive a $200.00 or $300.00 bill from an outside lab. I just wanted you to know.”

I started to cry and then I was asked “why are you crying?” Next, I was informed that no matter how long he’s known me, if the test had been positive, I would be kicked out of the practice with no place to turn. Innocent or not, I would have been “guilty”. I asked him “What could it be positive for? I did not do anything different?” He proceeded to tell me that I tested positive for PCP and Oxy-something? But I don’t take those! I don’t even know what “PCP” is? I had to ask and he did not answer. He could not understand why I was crying uncontrollably and inconsolably.

We had received a $265.00 bill from a lab just a few days prior.  We were going to call because we thought it was a mistake. Now we are supposedly responsible for this very large bill. I never signed anything promising to pay for all of those tests? But what happens if I fight it?  Next time there is a “false positive”, they won’t perform the tests, therefore I won’t be exonerated and I will be kicked out for no reason whatsoever?  The second test, of course, came back negative and I was exonerated. He told us that his regular office urine test has a “90 to 95% accuracy”. So that means occasionally there can be a glitch or a mistake. And we “get” to pay for that mistake.

I am tired of people telling me that I should not be on this medication. I take medicine that helps relieve my pain. I have almost no side effects and I’ve tried many other medications and therapies first. This was a “last resort”. It helps and I don’t want to stop because it gives me some semblance of a life. Without it, I would be in bed or in my chair 24/7.  I don’t want that.

Why do chronic pain patients have to feel persecuted and judged?

Nobody deserves to feel this way. There’s something definitely wrong and it’s about time that we fix it.

Suzanne Stewart Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient health advocate, support group leader & Mentor. She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation. The statements and opinions that she provides here are her own and should not be taken as the stance, position or viewpoint of the U.S. Pain Foundation. For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth. You can follow her here: TearsofTruth.com

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Authored by: Suzanne Stewart

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46 Comments on "Opinion: I Don’t Deserve This"

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No, Suzanne, you certainly didn’t, or don’t ever deserve treatment like that!
None of us do, and it breaks my heart to hear stories like yours. It makes me angry! It reminds me of a time when a similar situation happened to me and I turned lunatic on them.
Yes, it’s me the lunatic Virginia, and I did get asked to leave the doctor’s office, and I did follow through with reporting my doctor for lack of treatment. Well, I’d started to, but his office called me at home in less than an hour after I had left, to come and get my prescription, and, my referral to another doctor.
I’ve been with this doctor now for over ten years and we do just fine.
So my point is don’t give up, just keep looking up and moving forward and ask God for help and believe Him.

Suzanne, as a regular reader of NATIONAL PAIN REPORT I always enjoy reading your posts.
Perhaps you are a victim of an error?
For Drug Test protocol (meaning the operational aspect) we patients, physicians and advocates need to ask the 5 W questions to find a reason for a failed test that addresses something called “The Chain of Custody”. The 5 W questions are WHO, WHERE, WHAT, WHEN, WHY.
WHO: 1. Physician, 2. Patient, 3. Medical Tech, 3. RN, 4. Lab Personnel, 5. Anyone who may have carelessly handled your urine toxicology sample, including non-medical personnel lacking “chain of custody” training. 6. Drug Review Officer (yes, such a title exists! And such an individual is typically a licensed physician)
WHERE: 1. Toilet facility at physician’s office, 2. Medical Tech’s desk and work area where patient specimens are “securely” put in shipment bag for transport to Lab for testing, 3. Transport provider such as FedEx, UPS, DHL or USPS, 4. Vendor Contracted Lab where testing is “securely” tested. Many patients are unaware of a possible “mistake” percentage. Come on! Nothing is flawless and especially when human intervention is involved. Nothing is flawless in a setting or operational procedure. I wonder how many “mistakes” have been made causing harm to a compliant pain patient. Maybe there are lab folks who are careless and want to harm our segment of the pain population? We do not know what goes on behind the scenes, do we?
WHAT: 1. Urine Toxicology Exam testing for controlled substances including non-classified Kratom with medical criteria for health insurance, Federal / State DOT or workman’s comp results.
WHEN: 1. Patient’s urine is sample given t patient’s consult exam with physician tasked with treating their pain, chronic or surgery related.
WHY: 1. To obtain 100 percent accurate human urine toxicology data of pain patient’s donor specimen for analysis and provide those confidential results to the physician/clinician who ordered such a test. Dip-stick analysis techniques sometimes used at a physician’s office, but the “gold standard test” is typically performed by a computer guided testing device the specimen bottle mut be sealed before the patient goes and performs human urine “donation”.
Chain of Custody is important. Yet potential “victims” of error do not understand what takes place “behind the scenes” in a lab.

No, you don’t deserve it. The powers that be are in charge of your doctor. Before the FDA back to the Elizabethan age, say from 1880 to 1957 your pain would have been treated, even intractable pain because it was humane and moral.
Now the doctors, pharmacists, pain specialists, testing labs, physical therapists and many others are making more profit and Medicare is in financial trouble from the guidelines put forth by other state and federal agencies. Legality has replaced morality. Effective treatment replaced by ineffective. Inexpensive treatment by expensive and kindness by the cold callousness of so-called medical professionals.
I was a staunch supporter of the original Partners against Pain in the mid-ninties started in Staunton, Virginia. A doctor there prescribed medication for intractable pain patients and was crucified by the Virginia State Board of Medicine and the media. In the end, God needs to take control and come into the hearts and minds of the powers that be soon.

Thank you Suzanne! Always nice to read your information .

I recd a bill for a drug test for $1250.00, of course insurance denied it. I get the same bill every month & I wish they would take me to court….of love to tell a judge what they are charging patients monthly. Obviously I do not go to this clinic any longer.

William: yes collectors will go after you for medical bills. My wages were garnished for 5 yrs until a medical bill was paid. I have more out there I’m dreading more garnishment s. The first one threatened 25%, I told them id quit my job before they got that much. Offered them a $100/mth & they took it.

Virginia: one cannot act that way in a medical office. I have a great relationship w my dr, he is on our side, but he is told what he can & can’t do. He knows his limits to push back, prescribes close to what I had been on. When I have issues w pharmacy or insurance he helps, even on a saturday!!! I can’t imagine acting like a lunatic, in public, in a medical office.
If someone feels the need to act like what you described, you better just find a new Dr to help you.
My primary sent me to a pain clinic, it was awful!! I went back to tell her, it was out of her hands,i went out and found someone. I had to see 3 of them but I found one.
I certainly wouldn’t want the way you acted in my permanent files for all to see.
Good luck!!

There was a pain rally April 7th, just about ea state, did you go to to yours and make some noise????? Now there’s a place you can be a little louder, there’s plenty to do to make noise. Call your local media!

@Virginia, While I can understand where your words come from… If you truly understood what 99.9% of us now go through with our doc’s and negligent treatment you would not suggest what you have.
It no longer that easy! If I ever spoke up and screamed etc, as you suggested…
I’d be immediately discharged and without a prescription in my hand. I’d then go through withdrawal and be very sick. In that condition how do you even muster up the strength to shop for a new doc?!
Some people cannot just pick up and go find another doc…
They are now far and few in between.
Or the next doc may be 2 hours away!
Some people, like me, are dictated by their insurance company as to where they can go. Some people have transport issues. More and more pain docs are not even taking on new patients now.
Most of us are hanging my a thread with our current treatments due to the Gov’t stepping into our lives.
You ought to be more reasonable in your thoughts for us….

Suzanne, wow–I feel as if you and I (well, all of us CPP’s) are kindred souls. I used to go through this EXACT type of behavior on my way to my first PM doctor every month for my refills (until he retired suddenly and left me with nowhere to go, lost and in withdrawals). Lo and behold, I thought I found another doctor, she was wonderful & compassionate and while she wouldn’t increase my dose due to the whole daily MME laws, she did keep me relatively out of pain. However she too left me at the beginning of the month. Now I am living with just loperamide to get me through the day–I have been abandoned by two doctors. I suffer from CP due to an inoperable brain tumor, rheumatoid arthritis and fibro–you’re so right, none of us deserve this. NO doctor will help me either, I have called so many…I am being treated like some sort of criminal and I honestly don’t know what to do.
Another thing I am sick of and don’t deserve–anyone ever been told “well, you don’t LOOK like you’re in pain!” Ha. Ha. Ha. Wow, I hate that one too. I bet I look like I’m in pain NOW–I can barely even brush my hair, grooming etc HURTS me.
This whole opiate madness is crushing pain patients. Something HAS to change. Please keep fighting the good fight. I am so glad I discovered your blog.
Thank you so much Suzanne and sending you lots of love & light and prayers. Kitty hugs too from my three fur daughters here in MI <3

I’m wondering if anyone has been scared with the threat of Opiod lack of availability in the future? I had decided to wean down or off the Fentanyl jve been on for 10+ years. I decided on my own and when I told my doctor, he said he was going to talk to me about getting below 25m at min. He said it will most likely come to where docs will only be able to prescribe pain killers for 3-5 days for things like after surgery pain. I don’t know how true this is.
I feel like all of you. I HATE going to the doc every time I turn around. I always feel like I should tell them I’m an 8 on the pain scale, even tho the meds are more or less keeping pain under control. I take a lot of meds too, unfortunately..

Suzanne, I had the same thing almost happen to me, the urine test showed some drug I have never been prescribed. It is probably the worst thing that can happen to a pain patient and it needs to stop. We need to help each other and get organized as long as we let them treat us this way it will never stop. I don’t want to get people upset but I think it is going to get much worse. If we don’t fight back with positive articles of how pain meds have helped us we get a barrage of negative articles of how bad pain meds are and every one who takes them is an addict. I read an article where this drug company worked for 13 years developing those patches to treat addicts, that’s a lot of time and money. Look how the laws have changed and look who is gonna benefit , they helped to lobby for these changes . The cruelest thing of all is to give a patient hope and then strip it away, either by a bogus urine test, belittling or berating them or ignoring the patients pain. How many people have to die before people give a [edit] about there fellow human being. Two weeks ago my neighbor blew his brains out , I think he had a drinking problem, and living problem, every time I look over at his house it’s a good reality check for me of how precious life is, I just wish some of these other people who want to impose there will on us could feel some of the pain we deal with every day. Thank you Suzanne for taking the time to share your feelings and know you are making a difference.
Never give up.

I don’t see any boxes to check to receive posts to this thread. There used to be two boxes…anyone know how to receive new posts? This is a great thread. Thank u Suzanne.

I am so moved by all the posts here….I write a lot of letters, I do what I can. I don’t pray anymore. I’m tired of asking for help from a God who has never answered my prayers, over many years. What kind of a God allows his children to suffer like this? All over this planet there is horrendous suffering… But that’s a different issue….we have to find a way for people to get relief from all this pain.

Yes, it’s absolutely outrageous that all of us are going through this life threatening ordeal….life threatening in the sense that it could cause suicide in many cases. We are treated like crap. Verbally and emotionally Abused, insulted, stripped of our dignity. And no one with any power seems to care. It’s a true nightmare. As if we all don’t already suffer enough. What a horrible injustice we are going through.

Look, seems to me the LEAST of our worries is pain. Loneliness, humiliation, self flagellation, isolation(mental and physical), fiscal jeapordy, lack of mobility, loss(,oh so much loss), stress out of control, depession….. holy crap…….we are a desperate group.

Thought I would let y’all read what goes through my head when I read these comments. I think we fail to acknowledge just what strength we display by simply existing.

I completely understand the stress of going to the doctor for refills. I was trying to get a little more pain meds and was questioned like crazy. I felt so guilty for taking a couple extra on bad days and when I tried to ask for more I didn’t deal with the questions well and panicked and tried to back peddle and just settle for whatever. Then there was the urine test. Which came out negative. WHAT?! I’m taking these pills. I went somewhere else to be tested. Negative, AGAIN. WHAT?! I’m freaking out while I learn to live without these meds. The stress and emotions are too much. I don’t know what to do. I don’t deserve this. I’m just trying to survive each day and now I feel like a criminal because my body is not cooperating, ugh.

Thank you for expressing how u feel. I thought i was the only one. I am made to feel like i am sub human. No one even asks me how my pain is, or any thing else about pain. I have had over 25 spinal surgeries, was paralyzed from the neck down, a quadriplegic from MRSA all over my spine. I used to go to the gym 6 days a week for 2 hours. I was in great shape. Now, i have a fused spine from the neck thru my sacrum. I have CRPS, severe vascualar insufficiency, severe arthritis every where i am not fused. I have to use a walker at all times. My pain is so bad, that i am usually in bed on my air mattress by 3 Pm I still have severe neuropathy, have lost all my lower moror neurons, spent over 4 yrs in a wheelchair ETC I am not on any pain meds. They really don’t work on my type of pain (unless it’s Dilaudud) Nobody will prescribe any thing. The thing i hate most, is the way i am treated by most doctors. I wouldn’t wish this pain, or disability on any one. I have lost my life, pretty much all of it. I no longer can do about 90% of what i used to do. I can’t believe the prejudice we, pain patients, receive. I am single, no family, and no support. I am lonely and am trying to date. I keep all my pain, disability to myself. The only thing i tell a prospective boy friend, is that i use the walker for balance No one will even go out with me. I kind of understand, but i am very out going, friendly and love to have some fun or new experiences. It’s like i have leprosy. I hate what the DEA and every one is doing to chronic pain patients. I too, hate to go to any doctor. I feel persecuted, i’m sorry, but i was an RN. The health care system is a mess. But none of us deserve to feel guilty or anxious over being in pain and needing appropiate help. Thank you for being our advocate. Wish i couls sit up and participate with you!! Wish i had a life. Some times i don’t know why i continue on as i get so depressed and frustrated. The isolation is one of the worst things about severe, chronic pain

Sad. We are all refugees.

I completely agree that the opioid “crisis” is a farce. I would like to know how many of the people pushing this fake “crisis” engage in addictive behaviors on a regular basis that are obviously bad for their health like drinking, smoking, taking illicit drugs, etc. I bet those who engage in such behaviors, yet push the idea that opioids should not be taken for any reason, are LEGION! This is a trumped up crisis that we must fight in whatever way we can. It’s a “jump on the bandwagon” situation.

I would be interested in knowing if anyone has been denied access to healthcare simply because you take an opioid medication. I have taken a very low dose tramadol with acetaminophen and have since about 2002 when I learned about it on a fibromyalgia newsletter – after suffering for several years having no idea what had gone wrong with my formerly healthy body, I was diagnosed with fibromyalgia. The tramadol FINALLY gave me some relief and some semblance of my life back. Recently, after moving to a new area of my state, I was seeking to establish a relationship with a doctor for issues unrelated to fibromyalgia. I called two different clinics where the RECEPTIONIST (!) looked up my name and birthdate and announced to me that I could not be seen at their clinic because of taking tramadol. Not even for an unrelated issue! I believe this is discrimination and is unconscionable. After that, I just gave up and continued seeing my former practitioner who is very understanding.

Thank you everyone for your loving and kid words. I want to talk to Virginia! I don’t know where you live, what illnesses you have or who your Dr is?? But I can tell you that 99% of these people know me, that I’m a strong advocate and a fighter. I have gotten laws changed by sitting with my legislators. I helped to stop a 90 mme law from going into effect in Michigan! I donwuite a lot and I’m no whimp! I am a pain Ambasssdor and an advocate and I’m on the board of directors at US Pain Foundation! I Mentor newly Dx CRPS Patients for RSDSA and I do Awareness events and fundraisers and public speaking. I had a dr for 15 yrs and 3.5 years ago he left suddenly! I went through physical withdrawals though my mind did not care at all, my body got ill. It took months to find a new pain dr ! I finally found one. He & I have mutual respect for each other, I feel. But when the DEA /CDC comes breathing down his neck and/or the insurance companies stop paying; his hands are tied! No amount of screaming in his office would do anything more than have him call 911, to have me put in the mental ward! When it comes to their livelihoods or our lives, what choice do they truly have? I’m sorry but either you’re from some other country or something is different with your situation? But what you are saying is incorrect and there’s no way that doing what you say would help any of us in these times! I am lucky in that for now I still have my medications. I have Systemic CRPS, EDS TYPE 4-Vascular and autonomic neuropathy, Chiari, Gastroparesis, SIBO & RA! So much pain that I’m unable to live without help and my dr knows this! I’m only one of maybe 2-3 patients on meds there. I have been through it all and I’ve been fighting for all of us every step of the way! I just had to let the others know that I’m human and I get the same fears and feelings. I didn’t appreciate, at my age being made to feel guilty when I’m completely innocent! It’s awful! But please don’t tell us to do things that will hurt us more because someone might listen to you! We must be very careful what we tell others to do! I certainly don’t want my fellow pain brothers and sisters to end up on some psych ward for screaming like an idiot and making a scene! That never helps anyone! There have been rallies.There’s more rallies in DC in April! We need to be calm & proactive. Get our stories heard & our faves seen! I’m writing to help!

Susanne we all(well, most of us) have similar stories. Add to mine that for the last 2 years I have to drive 7 hours to get to a pm center after being dropped by the one primary dr in ,80 miles that still saw any cpp for refusing to have nerve ablation. I have to be driven as I cannot make that trip. Barely make it with a driver. Total trip takes around 10 hours. First thing they did was demand epidural even with arachnoiditis. I was scared to refuse. I refused each time since, I knew I wouldn’t live through the pain of another epidual. I am grateful I wasn’ t dropped for refusing. Read that again, I am grateful for not being dropped for NOT doing an unapproved procedure which CAUSED my problem to begin with…… How messed up is that!!!!
What the hell did we ever do to society? Work hard, wind up on SSD and in unrelenting pain and now suffer soul searing humiliation for just being sick? Being treated as third class citizens is acceptable if you are fat or have intractable pain. Now I am both.

Virginia that was incredibly insensitive of you. I live in a rural area with no choices. Most of us spend months finding a Dr willing to see us period. Compassion in pain care rarely exists. Glad you have a Good one.

Joseph Wasting Away in LV

This breaks my heart and struck a nerve. I have endured countless “alternative” treatments including an extremely painful rfa in which I’m certain I received no medication while the pain doctor burned several nerves in my neck. I have not been treated with any pain medication whatsoever! My cervical spinal stenosis is treated as a residual income for the pain clinic with expensive quackery procedures. I suffer with painful burning cramping waterlike sensations from head to toe. I am a 40 year old Male that suffered a head on collision in which I was thrown through the driver’s window head first into an embankment. I didn’t ask for these injuries but I’m afraid this is my life sentence. I contemplate suicide daily and minute to minute struggle with pain. I hear that pain medications are the best and only way to live a “tolerable” life. Yet I am not offered them and when I brought them up in conversation out of desperation for relief immediately my blood and urine was taken for a toxicology screen by the intern I see. Guess what nothing not nicotine alcohol marijuana nothing!!!! And still according to the pain dr I am a liability because I am in the age bracket and white which tend to abuse pain medication. I don’t want to risk going to hell but hope a swift demise is in order asap if I don’t get some relief. Screw the DEA and Congress for waging a war on people who already suffer intractable pain!

Great Article. You explained exactly how I feel every 30 days when I’m forced to the “Pain Management” clinic, so that I can pay a higher fee, more often, for treatment that my PC was taking care of prior to the CDC guidelines. No one around me understands how I can become so anxiety ridden from going to a doctor’s appointment.

I am so sorry you are going through this. It is interesting you remember it all began when you were about to have a vaccination at five. Your subconscience was likely telling you how damaging any previous vaccinations were to your health. I meet so many now, who when you ask them when they, or their children’s illnesses/pain began, they can usually link it to vaccinations and/or an arthropod bite.

You have just written my story and the stress, anxiety and being treated as subhuman takes a huge toll on our health. I saw my GP last week and I will no longer get my meds come July because of a new law in our state that takes effect then. I have the pain contract, follow the rules and even had the dr reduce the amount of pills I get monthly because I didn’t use them all.
I was so careful, used my meds on a as needed basis and they allowed me to go shopping with my best friend, cook holiday dinners for my family, make cookies with my grandbabies and allowed me to travel even though still limited. We all know the anger and grief we are experiencing and it is terrifying that my world will now be smaller. Dr admitted I did not abuse but she shrugged her shoulders at me and told me now it will be injections, PT, visits with psych to learn to cope. “We need to treat your underlying problems” I have been afflicted by Fibromyalgia , severe OA and DDD since I was 30. I have fought through pain and injury countless times with PT, gotten steroid injections and multiple joint replacements, don’t tell me I have to “work” the treatments. I am 61 and so tired of this and do not need to be lectured. Now I feel like they see me as a cash cow and can do even more procedures and get more money. I no longer feel like an individual patient being treated with compassion
I feel dismissed and marginalized but I refuse to feel the guilt and shame they are heaping on us. I am grieving and extremely angry and when I come to terms with my grief, I will fight for us however I can. My belief is the backlash from this will be huge.
Thank you Susan!

Wow Suzanne, just peeking below at some of the replies, it looks like many of us feel like you! I too, have been the perfect patient. Three months ago I gave them a urine sample and the young girl that’s taking my vitals asks me if I am on Benzo’s and I say no, why? I’m thinking “don’t pull this [edit] on me!” She said a small amount turned up in my urine. NO! NOT! I do not take any Benzo’s! Well the Dr. didn’t say a word when she came in. Talk about stress! But every time I go my blood pressure is high….I am normally 120/60. And I have to admit, the morning of my appointment I can be a [edit]! I have to keep telling my wonderful Hubby “I’m sorry” but he understands.And now that I have been cut back forcefully three times, I am so scared another cut is coming!

Yes, you said it Suzanne….. this is not right! There have been times I had to just stay off the computer due to excessive crying reading about everyone and reading the [edit] on this so called opioid epidemic.

I do not have any side effects either but one and good ole Raisin Bran takes care of that! 🙂

I had a good relationship with my Pain Dr. (or so I thought) then she blind sided me. It hurt me terribly! If I get cut again, I dont know what I’m going to do. My activities have been cut short by at least 50%.

May God bless you and each and everyone of us.

Virginia ,
Please know that what You say will never work…please know that doctors do not prescribe medicine for us if they don’t want to no matter what we say…they are not willing to risk their license. This is the reality of it. Nothing we say will make them do anything and if we acted that way we woukd most likely be arrested.

We can we do? I am ready.! We have to hold a public protest and bring the media. We have to do what the teachers in Oklahoma did..We need to set a date and do a media blitz we need a big name celebrity to back us. Doctors are choosing to abandon us …they are no longer willing to risk their license for little old me or you.. It is not right. The statistics are not accurate that have fueled this hysteria. And I spoke to people who support the opioid crackdown but had no idea that it means doctors boy giving patients medicine when there is substantiated medical need to have them. They think they are supporting a crackdown on the few bad doctors and people and dont realize that it has turned into people like us who are legitimately in need of medicine. And bottom heroin overdoses and deaths and others street drugs SHOULD NOT be included in data about prescribed medicine from a doctor…

I live in a small town -the closest city is 4 hours away. When my Dr. was being told by his partners to ditch all of the pain patients–he kept me on a year longer (he knew how bad it is for me) but finally made it clear I had to find a new dr. The newest (and only) pain clinic in our area closed down the week I tried to make an appointment. I was Incredibly Lucky and found a dr. who had opened his office just a few weeks earlier. The only other option was that long drive every month–and driving or being in a car is the worst! The vibration from the road just cripples me! I do not have ONE person I know who worries about their dr. dropping them. Just me. I cringe thinking of you all having to be in a car for an appointment full of uncertainty and fear.
None of us deserve this–even my husband does not fully understand (I do not think you can until you have gone through this type of pain for years). He still tells me to exercise! Go Walk! We used to walk together a lot! (He had no idea the amount of sheer will it took to go–and then to seem happy about it!). What hamstrings us is ALSO the articles about: “I was in extreme pain then decided I was NOT so now I rock climb and run every day!!”. To me their “before” stories all sound like depression with mild pain. I CANNOT (and I was brought up to hunch up and just go DO IT ANYWAY) do the things I used to–friends, activities–gone. If my new dr. starts listening to the Opiate Propaganda I am doomed to a “life” in bed, in the recliner–doing Nothing.
These comments make me feel it is not just me. I wish it was none of us-but it helps to know others are fighting hard too.

This story brings to mind a truly outstanding PM practitioner, the late Joel Hochman, MD of Houston. Joel did his residency in Psychiatry at UCLA, at around the time that the MAOI drugs first came into use for treating Major Depressive Disorder. Prior to that, there were 2 therapies for Major Depression: Electroshock, and Long-Term Opioid Therapy using codeine. Electroshock was faster, when it worked, but there was danger of relapse. Codeine was a life-saver, when it worked, but in some patients it just never worked. Mental illness still scares the hell out of people because of the lack of effective treatments. People try to imagine that they’re immune to mental illness, and that thinking is disastrous when stress hits.

I had the chance to interview Joel shortly before he died of kidney cancer. He continued to treat patients, right to the end, because he genuinely cared about them. Joel shuttered a successful psych practice in Santa Fe and moved to Houston, at the invitation of C Stratton Hill MD of the MD Anderson Cancer Center, who wanted the Center to offer counseling to cancer patients and their families facing deadly disease and end-of-life decisions.

The key insight Joel brought to MD Anderson, was that enough stress can make anyone seem crazy. Yes, there are hereditary differences between individuals, that determine where our minds snap, when the stress becomes excessive. But no, there’s no such thing as a person who can survive an unlimited amount of stress.

Too much pain absolutely will make anybody seem nuts.

Having any sort of disease, especially one that’s not likely to resolve on it’s own, is stressful.

Being in pain from that disease, adds to the stress.

What we ought never do, is compound that stress further, by accusing the person of lying about how bad he or she feels.

It took a lot of courage for Suzanne to express just how bad she feels, experiencing the fear that she might be forced to suffer more pain than she’s already in. When will our public officials realize the harm they are doing, by putting people in that state of fear?

Hi Suzanne,
As always, I feel for you (and for me too) having to go through all that we do.
I relate to every word you wrote in that post.
Last month I was asked to give urine for the drug test. Remarkably I had not been asked to do one in about 6 mths! It used to be every month for me.
My appt went as usual… And when I got home I noticed that my Pain doc office had called but left no message! I went into panic mode!!
I have nothing to worry about but you never know where they are coming from.
I too get all worked up each month until I get through that appt!
And so now this whole month I can’t help but worry that my urine came out positive or something and I will be discharged next week at my next visit.
I hate this feeling!! Years ago I looked forward to seeing my old Pain doc (in a different state bore moving to Florida 4 yrs ago).
He was caring and I always always confident in knowing that he would show interest and discuss my condition that month and make appropriate treatment adjustments whenever necessary. Those days are shamefully long gone for us
CP Warriors.
It hurts me that even someone like you who is a huge advocate for our community has to go through all that you do! Keep strong. Sending hugs, Maureen

I feel you Suzanne. I go through the exact same emotions as you do ever since they started doing all these ,what I believe to be unnecessary tests. Just 2 months ago I go to my Dr. and she told me that my urine test came back that I was not taking my Soma and that they were going to take me off of it. I took Soma 3Xa day every day for 10 years and a test comes back and says that it shows I don’t take it. Who does these tests? So last month I go back nervous and afraid that my meds are going to be reduced and I am shaking and can’t stop myself. So I go back and the Dr. mentions nothing about the test but she tells me that the Government is no longer going to let Soma be on the market so I had to quit taking it. Then the real blow came and she says that they also have to cut my meds yet again. I just started crying. For one thing I take the lowest dosage and they feel that they are being pressured by the DEA to cut back their patients meds once again. Why am I being made to live with my excruciating pain just because of other peoples mistakes. I can’t blame the Dr. because I know her hands are tied. I just wish that the DEA will leave the legit Dr.s alone and let them be Dr.s. These days I hardly ever leave my house because my pain is no longer under control. The low dosages that I am taking just is not doing what they are suppose to be doing and that is making me a recluse. I am 55 years old I have been married 39 years and I am a Grandmother to 7 Beautiful babies and I feel that I can’t even do anything without being in pain so I just stay home. Then there is my Loving (Not so much these days) husband who is forever calling me an ADDICT. Just because I am on pain meds does not make me an addict? I pretty much suffer in silence these days.I just wish that someone anyone for that matter hear me and see me for the person I am and not for the person who has to take pain meds every day to take at least a little of my pain away.

Hello Suzanne, thank you for sharing. My heart goes out to you. As I read your story, I feel like am right there beside you as I too have a very similar experience every month. Tomorrow being my day again. My blood pressure runs sky high due to the added pain of getting up so early to make the hour drive but also the fear of them not filling my meds or cutting them again for some random reason. I try to comfort & calm myself with the fact that I have been with this practice for over seven years and have been the perfect patient as I have always been no matter where I’ve gone. I am extreamly documented which I would think would help any doctor verify his or her case on why I am prescribed what I take. I try to make it easy for them as I am sure you do as well.
I used to think I could overcome anything. I was mentally strong and in pretty good shape. I had a great job and I was very successful. My husband and I played, hiked, skiied, danced, traveled. We did whatever we chose. Pain was the furthest thing from my mind. I wouldn’t even take Tylenol. I gave birth to our one and only child in 1990. I was in extreame pain but went through it with absolutely no meds. After that point my body seemed to turn on me. In ‘94 I started having seizures and then one morning I could barely move I was in so much pain, all over. That was the beginning of a long list of diagnosis and drs., end of my life as I had known it, no longer the person I had been. It took almost loosing my marriage before I would agree to go on any pain meds. I had heard the horror stories of addiction and I was afraid. But the desire to keep my marriage and continue to be the mom I needed to be, as well as having an awesome Dr. changed my mind. We tried every combination of med. When it was all said and done, chose something that I could take that had no side effects other than less pain. Since ‘94, my life has changed drastically, but I’ve tried to keep a good attitude and find a way to live within my new “boundaries”. I was successful in reducing my meds substantially. I’ve never increased them other than with surgeries but was quick to reduce again. Now because of Drs. reductions, I don’t have much of a life. I am fearful of more reductions but don’t have anymore to give. So, YES, we must stand together or we will have NO life left. I would like to get together ambassadors and warriors for sit dwn w/Attorney G’s of states w/news channels and then tell us why they feel we must be punished!

Thank you for putting into words and describing exactly how I omg I’m so right there with u and you put into words and described exactly how I and it feels to me wabout the treatment that I’m receiving every single time I have to go see my primary doctor because after being abandoned by my previous pain management doctor who left me a cripple with a totally new illness and condition that I didn’t have before seeing them and that has left me with what I believe to be CRPS and a case of the worst variety .that has left me losing The ability to walk and bedridden most days now presently. because he took advantage of my illness to line his pockets with money by charging 1500 to Medicare for epidurals he proceeded to give me for 4 years straight every two weeks alternating from neck to back for treatment of my spinalz stenosis and degenerative disk disease. However due to the sheer amount of these procedures that were performed on me when compared to most other states that regulate like RI to 6 a year or as Kaiser insurance only will allow a total of 4 per a year.. I’m not sure what the exact math on this is at him doing a epidural every 2 weeks on me for 4 years straight …u would think I’d have a slam dunk case for mal practice but the days of lawyers working on contingency now that they have put a new cap of 200000 on these types of cases for settlement…and being I live on social security disability of 1107 a month I don’t have lawyer money to pay and my statue of limitations is about to run out…furthermore I haven’t been able to find a new pain dr after 30 + new patient consultations and referrals from Medicare however the new things is Drs cherry picking patients and lemon dropping patients …that has left me and I’m sure others falling through the cracks of this inhumane treatment that when I share my experience with anyone who will listen many if not all can’t believe it …I literally feel like I have Leproacy in medieval times if I were to try and describe and put into words for how I’ve been alienated and looked down upon or talked to like I have done something wrong to be treated the way that Ihave been.as if my life and the cards I was dealt after having a traumatic and catastrophic accident that left me initially injured if it wasn’t miserable enough …trying to survive and find some enjoyment from life knowing now at 42 I’m never gonna have my own family of my own. Its like I’m on house arrest bedridden and now tortured do2lack of meds

I have the same problem Suzanne, it’s two weeks before I meet with my pain doctor and anxiety is already setting in, this always causes elevated stomach issues, pain issues, life issues. This is just not fair, we are not guilty of any crime, yet we’ve been tried and convicted. As far as I’m concerned this is a crime against humanity. I think it’s high time these educated idiots with no common sense go to jail. Or better yet given the death penalty for every suicide committed by a pain patient.

We are stuck between a rock and a hard place. Many of us have been very careful to follow prescribing instructions. I don’t feel at ease anymore dealing with doctors and stress does impact my pain and fatigue.

I’ve gotten to the point that I don’t want to see new doctors. I don’t want to fill out paperwork for appointments. I used to be hopeful. I now know that not only can the doctor not “fix” me, but some doctors have made decisions that have made my health worse. I’m not even talking about pain doctors! It’s the pain doctor who can really pull the rug out from under me, though.

So far, it hasn’t happened. But next appointment? And the one after that?

And I feel like I have to work harder to be the “agreeable” patient. How far can I go, though? I told the doctor that I was going to the gym about 3 times a week. She said, “I think you should start swimming.” I was crestfallen. … how…?

I don’t drive (because of my health). I think of how I’d get to & from a pool. Subway and then a bus. My heart sinks. I’d have to take a hair-dryer, swimsuit, towel… change clothes (very tiring…). Let’s just say that my frustration is building.

After the appointment, my gym attendance drops off. It’s been a few months, and I was at the gym 3 times again last week… finally.

I can only do so much, and it’s discouraging to know I’m expected to do more. I don’t think these doctors understand. I know they don’t. And they’re going to make critical decisions for me.

At the same appointment, the med intern said to me, “Maybe you can start driving!” I thought, “What changed? I told them I was too tired to be trusted behind the wheel. When I asked the doctor about fatigue, she said, “You’re smart. You’ll figure it out.” I dread the next visit. If they can’t help, please… please let them at least not cause harm.

I’m so sorry this happened. The only thing I ever hear physicians mention about urine drug screens is that they are very accurate, as if there are no false positives, and as if they have no idea what a false positive would do to someone. But when you overuse a test constantly, you guarantee false positives will be generated—a lot of them. I don’t think they understand statistics at all, and I don’t think they are trying to understand what it is like to be a patient in this atmosphere.

(((((Hugs))))
No, you don’t deserve that. No one does.
Sometimes I think the mysterious “they” is just trying to get rid of all the pain patients, one way or another. 😢
Thank you for your letting all of us know that we aren’t alone!!

I’ve felt the same way since I was a little girl too. I’ve always loved everyone but when it came to doctors that was quite a different story. Most in my lifetime have treated me with disrespect, I’m just another number and they were going to make sure I knew it. Back in 2009 God sent me a wonderful physician that was literally an answer to many people praying for me to get someone who truly cared. He was the first doctor who said you need pain medicine and I don’t have a problem in prescribing it for you. I thought I was going to fall off the table I sat on, I couldn’t believe it. He proceeded to say, the man that was in here before you needed pain medicine about like I do though you’re a different story. I hope that one day my doctor will treat me the way I have treated my patients. I was so relieved, I had finally met someone human Instead of another robot. He’s been as kind to me as any friend I’ve ever had for that’s just the way he is. Thankfully he’s not turned me over to just any pain clinic for “help”, he has kept me and continues to give me one fourth of the medicine that I was on in early 2016. That’s all he can do. A couple of weeks ago he told me that the doctors in their group were bringing in a pain specialist of their own, and starting a new pain clinic downstairs. Part of me thought thank God maybe I can finally get the help I truly need and the other half of me is scared. Can this be an answer to my prayers or could this turn out to be another nail in my coffin. I woke up this morning in hideous pain, laying there I said dear God why do we all have to go through this, it’s just not fair! Why are they doing this to us? Why does our government and others get to play doctor when they don’t have a medical degree, when they’ve admitted they don’t know what they’re talking about, when there are billions of us needlessly suffering, why dear God oh why? Finally I said just get up and know you’re not alone Terri. It’s been a comfort to think about Dr. Lawhern and Mr. Robert Rose that have advocated for us while dealing with issues of pain theirselves. Also to have the national pain report to come to and voice our opinions when it seems we have no one else at times. The more I hear it seems like this “crisis” grows worse by the day. I will continue to cling to my faith in God that He will deliver us from this evil injustice. I just have to believe and continue to pray for all of us and that I most certainly do. I simply refuse to give up hope…..

“I am tired of people telling me that I should not be on this medication.”

What is it about us chronic pain patients that makes other people believe they have a right to sound off about our medication? I’ve learned to ask the “volunteer medical expert” if they are an MD.
The answer always comes back: “I am a (fill in the blank with anything that doesn’t include the words ‘licensed physician’).
Are you a board-certified physician specializing in the treatment of pain?
Response: More dithering and humble-bragging, but the answer is never a “Yes.” However, it almost always includes a lecture about how opiates are baaaddd, do I want to become a drug addict, the speaker had a friend/relative/knew someone who was a junkie…
Chronic pain makes me less patient with know-nothings who love the sound of their own voices and received their medical training by watching breaking news about the opioid “crisis”. When our bodies give us unending misery, the first thing we lose is our ability to tolerate fools gladly (or at all). I believe this should be included as an official diagnosis every time someone asks what’s wrong with us and what we’re “taking” for it.

Oh, Suzanne, I know how you feel but my trepidation’s are when I get to the pharmacy. My PM and I have an amazing relationship that I know I never have to worry about him kicking me out of the program because he knows how sick (physically) I am but there’s always a chance. I’m just wondering if you had, by chance, tried any of the Hemp CBD oils that people are pushing us to try? I’m hearing that some are mixed with solvents and can cause positive results on drug tests. Anyway, like I said, every 28 days going to the pharmacy just waiting to find out if Medicare will approve my medication this month. Same medication I’ve been on for 12 years but at lower dosages. I can’t relax for 3 days until I know the meds are ready to be “picked up.” Last week’s visit was different. I had emailed my PM your 3-part series report the week prior to my appointment (I send him as much information from our organizations as I can) and with that knowledge, and what the government has sent him, his first words to me were “You have to get off Medicare and find private insurance!” Why now? As per your series of the April 2, 2018 decisions for changes in Medicare January 2019, he said I have to get you onto a Morphine Pump! Medicare still pays for the pump and surgery but not the medicine which is $2K/month. My husband has his own insurance and he pays almost $1K/month (he’s self employed) just for him and he’s never sick. It’s going to cost us an add’l $1K to add me and the $6K deductible unless I can find an insurance that 1) all my doctors participate, 2) has low deductible, 3) no referrals needed, 4) covers not only the morphine pump and medication but will also allow add’l pain medication for my thoracic and cervical spine areas because the pump is not bi-directional and will only cover my legs and hopefully lumbar spine. My disability for chronic pain began after my third cervical spine surgery and I cannot hold my head up without pain medication. I have severe DDD, RA, OA, Osteoporosis, Fibromyalgia, Late Stage Lyme Disease, several pinched nerves in the cervical and lumbar spine areas, and so much more nerve, muscle, bone and joint problems that anything above my waist won’t be covered with the pump, but only private insurance will cover other pain medication to equal the mandatory 90MME come this January 2019. I cried my whole way home trying to figure out how I’m going to afford health insurance.

Thank you for writing this Suzanne. I appreciate hearing that I have some company, for what it is worth. Of course this is not your fault. This opiate thing is not a crisis. Not at all. If the CDC actually wanted to “save lives” they could look at the effects of tobacco use. Tobacco kills way more people than all the other drugs combined, legal, prescribed and illegal. To anyone who is slightly more than half awake this “crisis” is not about opiates. I am not sure what it is about, but it seems like a holy war in many ways . And you, me and all the other legitimate users of pain medication are the victims.
This blog is helping address the issue. So,thanks again for your courage and contributions.

I feel your pain on this subject! Those BAD apples out there have taken over and we have all been thrown into this same generalization. It makes me so frustrated & mad at those people. I try to remember they have a disease of a different sort. However, it does not make it ok for those of us who have a file 5 inches thick, with trying surgeries, scans, and every different therapy possible to deal with being treated this way. I’m in pain. It’s not from lack of trying to get better. I’ve felt like this for a long long time. The past 8 years of my life I have tried everything possible to help myself. None the less, I was told that the laws were changing & no matter the fact that I had every right to be on meds for my pain… I was going to be weaned off. My doctors words were “if you don’t like it, find a different doctor”. He went over a list of things I’ve tried (some of which he has never heard of). He told me i was an addict, but admitted he knew nothing about addiction. I told him my body was dependant on these medications. I’m not an addict. I do not seek out additional drugs, I have a home, cars, family and have run my own business for 21 years. I don’t know many addicts that are able to do that. I’ve never had a dirty per test in all of the 8 years. I’ve never asked for early refills. Yet, I’m treated this way & you are treated this way! Inhumane!

I understand your dilemma, doctors no longer put the patient first, they are basically controlled puppets. I tested positive for some drug I never heard of because I was using a Vicks inhaler. The doctors should use any measures it takes to make their patients comfortable, not to be afraid to up your dose when you’ve been on the same regiment for years. The doctors are hippocrates because they no longer go by the creed they use to. I am in so much pain and getting little help which is making it harder for me to have any quality of life. It’s time to make a stand and take back the medical field from the government and DEA.

For heaven sake don’t pay it. No collector will come after an unpaid medical accunt.

Where are all you people getting these nightmare doctors? My God in heaven, why don’t all of you please go to another doctor who will listen to you and understand you are not junkies looking for another fix? Surely some of you reading these posts have a doctor such as mine who will give pain meds, maybe not as many as preferred, but also other meds along with which also help as well? If you have a disease that warrants pain medicine, a doctor worth his or her salt is not going to be intimidated by a smuck in the office of someone who isn’t a medical professional! Come on, do ya need to be in a medical coma? Surely you can file a lack of treatment against your doctor for not giving you a medicine which if not given would cause you harm!!! Stop letting these people walk all over you!!! Use your pain and get angry!!! Don’t leave their office until you get what you want!!! Get louder and louder!!! Yell, stop, you’re hurting me!!! Let their other patients hear your pain!!! I guarantee you’ll get what you want. If only a few, and ask this doctor for a referral to a doctor who will help. Ask them what happened to the hypocratic oath they swore to uphold to do no harm? Remind them they ARE doing harm and you are not afraid to report this to the state medical board where they have their medical license. They expect you to pay? Well, let them pay too. And please, find and go to another doctor.

I am sorry. This happened to me early on. My poor body and mind cannot deal with this type of treatment.
Thank you for sharing.

I hear you. This is getting worse every day. I just got a bill from a drug-testing lab for $450. No explanation why, and my last urine test was 3 months ago. I’ve seen my doctor (the same one I’ve been going to for over ten years) twice since the results came back– I saw them on his desk. He said nothing about it– no failed test, no re-test, nothing. I’ve been saying this for awhile– I believe what’s going on is genocide–to at least cull the aging Baby Boom generation considerably if not eliminate it completely. And to torture, humiliate, shame, and, if nothing else works, bankrupt pain patients born after 1964, setting them up for earlier than normal deaths. Where in God’s name is the ACLU, where are the civil rights lawyers, where is anybody with some knowledge/skills/money/power and with a heart & a soul who knows the history of genocide worldwide and would step up and fight for the millions and millions of Americans suffering because of this horrific, diabolical, evil attack on our most vulnerable citizens? This isn’t insanity. It’s happened many, many times before in many, many places. And here we go again.

I felt the same anxiety that you did, but that was when I had a horrible pain management doctor. Fortunately I no longer go to that PM Dr. I was able to return to my prior PM Dr. and all my anxiety disappeared thank goodness. Thank you for sharing your story.