My Story: My Search for a Pain Doctor Continues

My Story: My Search for a Pain Doctor Continues

By Janell Ansell.

I’m a 35-year-old woman who lives in rural Michigan. I’ve been suffering from knee problems for most of my life. I have had four failed knee surgeries. My knee continues to dislocate. My past doctors have said I’m too young for a knee replacement.

From 2016 to 2018 I was seeing a pain management doctor in Marquette Michigan which is about an hour from where I live in Escanaba. In late August of 2018 he got shut down out of the blue. I then went to see my primary doctor in Escanaba and asked if she could prescribe the medications, I was getting from my former pain doc until I could find a new one.

She said she couldn’t prescribe methadone and gave me a month of my usual oxycodone dosage. The next month I went in for a refill and she refused saying I failed a drug test which has never happened in the 5 years I’ve been a pain patient.

When I was tested the bottle was not marked with my name on it or anything so I don’t know if there was a mistake or not. I asked her to please retest me and she refused I asked her to wean me down and she refused. She told me no one ever dies from withdrawals. At that time I was on 90 mgs of oxycodone a day.

I left that practice to find a new doctor and found one at Great Lakes Family First Center in Gwinn, Michigan. In February I started seeing a doctor and he said he could prescribe me up to 50 mme a day and I said that was fine. So, the first month he started me on 7.5 mgs of Norco 3 times a day and said he would up it as needed.

The next month I went in and he said he couldn’t up the dosage because the board wouldn’t let him citing the CDC guidelines. I brought in a paper to his office for him to read and show the board from the CDC stating those were just guidelines not laws. I went in the next month and he handed me back the papers and said he knew how to do his job and then told me he was dismissing me as a patient.

I asked him why and he stated that he wasn’t happy with me bringing in that paperwork and that we obviously had different ideas of how my pain should be treated. I’ve been without a doctor since. All the pain clinics up here have been shut down voluntarily or involuntarily and I haven’t been able to find a new doctor that will help with my pain.

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Authored by: Janell Ansell

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Lids Graber

I live near Boulder, Co. I had right ft. pain that started 1/7/17. It felt like I was walk on glass. I t has progressed to the top of my ft. and toe. Give top Orthopedic Surgeons all had different surgeries, except the Steadman Clinic said no to surgery. I had inflammation in my ft. I then started getting pain in my right scapula, armpit, ribs, elbow and hand. I believe it was from improper use of the crutches, using armpits. Some Drs. believe that now. I have been sent to so many Drs. and have no answer, except go to Mayo and I was just turned down for the 3rd time, 8/5/19. This last time was the Spine Clinic and they told me and my husband they were referring me to Medical Rehab to work on getting off pain meds. ( which is only a Buctrans patch sp.) it’s not opiates. They will do PT. to work on what’s wronged. We told them that is why I was going, because no Dr. knows. She said that wouldn’t be a good fit for me, because I haven’t been diagnosed nor on opiates. I should go through neurology, internal medicine or orthopedics. We told my Dr. tried Neurology and Internal Medicine and were turned down. She didn’t care and so I’d have try I’m a year, which is next Jan. or Feb. I want to know what I have. My dentist won’t touch my chipped tooth, or anything else, because I only weigh 100lbs. I force myself to eat a lot. Drs. say at least 2-3 shakes a day, plus my meals, but the weigh drops off. She said I could have a stroke or heart attack. My pain management is a joke. They told me I was accepted twice. My pain is usually a 10+. I’m scared and don’t want to die. I make my husband hold my hand at night, in bed, because he’d be able to call 911. I just want to know what’s wrong, and the pain to go away or at least ease up. Why would I be turned down? I’ve had so many MRID Ct scans, X-rays, injections, nerve blocks,EMG/NCS, PT (made it worse) and they stopped because they didn’t what was wrong. I’ve done acupuncture, dry needing, chirp and massage ) 60+. HELP PLEASE!

Adam H

Where I live in Florida has gotten so bad that the methadone or suboxone clinic is pretty much the only way you get opioids..unless you’re terminal that is. The drs here behavior was like weasels and they mostly very suddenly desserted patients to suffer hellish nightmare withdrawal without recourse. I hate how the drs would lie to your damn face very often. I decided instead of jumping off the sunshine skyway bridge I was going to try methadone clinic..Im a spondylosis sufferer and the drs would say I should meditate and visually ease pain..of course I need to also pay them for the hokey hippy dippy new age treatment ideas..to hell with that. No matter if trump or a socialist gets elected..the government dea has done damage thats impossible to ever take back. Drs are being taught to avoid opioids period. Between the dea and drs replacing those who’ve been jailed or run off..pain patients are in dire straits indeed.

Bruce

The only surprise is that you had to wait until 2018-19 to have this happen. It happened to me in 2013. Long time ago. I had to move away from Florida because the pharmacies would no longer fill my prescriptions. No reason given. It looks like you will have to move. I’m in Las Vegas now, and go to a big pain clinic where I receive meds every month. Do I need more? Probably. But it’s a helluva lot better than nothing. Which is what you’re going to get in rural Michigan. Good luck and leave as soon as you can.

I’m too tired to do the rounds again like I did yrs ago. Saw so many drs, had so many treatment and medications i can’t recall many. Did that for yrs. Even though my doc tapered me and I’m not near as stable as once was and I have to travel 6 hrs round trip, I don’t dare lose him. If something should happen to him I have nowhere to turn! I can’t even get a primary to see me for regular yearly checks, even though told I not want or need pain meds! I’d just hafta give up, I’m too tired to try anymore, just don’t have the stre ngth. I have been looking into some back up alternative just in case bcz I know if I lose my meds like I said I won’t have energy to search around. So I know that I can use kratom for withdrawals if have to. Works great for that but doesn’t do much for pain. Then there’s ketamine infusions, I’m hearing great things about. It’s non opioid I think and very cheaply made. Don’t know if insurance covers. There’s a Dr on CAW 360, Her show is called Keeping you in the Family. You can get her on you tube. Margaret Aranda. She has a combination therapy that you can do yourself some of an maybe get the other meds, all non opioids, from a primary? You could probably even see her. I’ve heard about her therapy as well bcz Dr Tennant treats with hormone therapy too and he taught her some stuff. I’ve been wanting to try it. Alot of ppl swear by her system and no opioids so you don’t have to worry about that. Each med she gives does seperate things. Of course the ketamine goes with it in majority of cases but not all need it. You should look her up and give a call an meantime try kratom, the red is for pain and you can probably go to kratom.com. Many online vendors that are reputable. Good luck to you and hang in there. Opioids aren’t the be all, end all. If I wasn’t already on them for so many yrs I’d be doing exactly what I’m telling you as many people have.

Holly

I too am so sorry Janelle. I had my Methadone taken from me in Jan and haven’t been the same since. I was 121 lbs…I am now 97 lbs. I hope you didnt suffer too bad with the withdrawels. My prayers are for you and all of us to find pain relief and make these jerks stop harming us!

Marvin Gardens

I have scoliosis,severe spinal stenosis and cauda equina compression. My current pain doc has me severely undermedicated and won’t budge. And in addition, he always won’t let me refill until the 31st day so I end up out of meds that morning.

This whole backlash can be reached to some guilty parents who ignored their kids and became torch and pitchfork wielding a-holes. Sorry your kid died, but it has nothing to do with my pain and my suffering. Or your pain and your suffering.

We, the CPP community, need to have our voices heard. Even though the CDC back tracked, Doctors still refuse to treat appropriately. And the sick thing is that I know these cowards are drinking alcohol everyday, smoking weed and yet hypocritically tell us we can’t have the medications that allow us to function.

Hell, one Walgreen’s pharmacist chided me for wearing shorts and a t shirt when I filled my script once. “Why are you dressed like that to fill a script like this?” he said.

The stupid thing is that denying us the meds we need is only going to increase the use of street drugs and the suicide rate.

Doctors current behavior cannot stand.

Jeff

Dear Janell,
My heart breaks for you honestly it brought tears to my eyes just heart breaking every time I read these true stories.
I had to move to Southern Illinois three years ago and my health for the most part with one exception I was on 40 MGS of Kadian daily with 15 MGS of Oxycodone four times daily then moved here they took my Kadian and put me on 15MGS of morphine extended release and ever since my pain levels are rarely below 7.5 most of the time an eight. So yes I understand so many peoples problems but not being able to get a GP reasonably close to home that’s just wrong!
Janell and all of you please know you have so many of us praying for you and helping fight for OUR right to be treated for our true pain problems! We are being punished for our health my insurance only pays for the morphine it’s only twenty bucks and am sure they don’t pay anywhere near that I have to buy the Oxycodone every month that costs me almost a hundred dollars a month plus three weeks ago insurance sent me a letter stating they would longer be covering my meds for the Epilepsy or greatly reduced amounts I was stunned beyond words they are NOT DRUGS BUT ABSOLUTE TRUE medication after three years of massive seizures and countless ambulances and hospital stays with serious injuries caused by breakthrough seizures and more it is without doubt whatsoever I have true Epilepsy yesterday I was able to get into see my neurologist to talk with him about it he freaked out and said don’t worry I will get this taken care of one way or the other this is how they take care of Soldiers please don’t think you are alone my own life is now under very severe threat while I am only 57 years old I am completely disabled and only collecting 800 a month when I should be getting paid over 3300 per month. I refuse to let this take my happiness away from me.
I had a three story fall and broke 70 plus bones at 29 years old and I went back to work three years yet still treated like I killed someone!

Michael

Dearest Janell,
My heart and soul goes out to you, I know every miniscule of widthdrawl agonies you experienced, thus, i am so sorry. Your treatment plan is not final, nor is it sealed in doom. I know, somehow, someway, sometime soon, some physician or pain specialist will rescue you at least, with some RX relief from your unimaginable pain. Methadone is pure Hell, like no other drug withdrawl, and in some people, it holds on. I know you’ve heard alot of biographies, but my story, the short version..is as thus: I was on Methadone -50 mg./day and hydrocodone 10/325 x 4 per day for 21 yrs, when my doc went on maternity leave, i saw a vicious, abusive
PA who yelled at me and was the “Drug Cop” for the pain clinic. She profiled me a potential abuser, only because I had filled ONE script at another pharmacy, only because my regular pharmacy was out of my pain med for 10 days, and i obviously could not wait that long. The clinic instantly stopped my pain RX cold turkey. The methadone withdrawl was so horrifying, i went to my hospital ER and a male nurse told me i was an ADDICT. His wife of course, runs a drug rehab clinic. I was black listed by my primary care physician, who i dumped instantly. I had tremors, extreme exhaustion from lack of sleep, lost 45 lbs. and after 2 years, still wake up some nights with my arms ‘vibrating’ like electric shock. I did not give up and eventually found a compassionate pain specialist who finally RX’d me Hydrocodone, tapered down but at least i had some. I live in Oregon, and my current pain doc is retiring soon, but i will keep looking. Please, don’t give up. You have alot of support and doctors, phd’s and PA’s on this board- wonderful people who can give you advice, support and compassion. Hang on Sweetheart.

Jamie Tomes

What happen to first do no harm. I was. I was 29 years old when I had my knee replacement so that doctor is full of [edit].

Kimberly Peterson

I live in Florida and have taken pain medication for the last 10 years.I have Klippen-Feils Syndrome plus my lower back pain.There is no cure and it causes severe pain in my neck,plus other complications.The recent cut back guidelines by the FDA or whoever came up with them. Isn’t stopping the crisis the druggies are still getting their drugs,but people like me are suffering in pain because our pain medication has been cut back!!Something needs to be done about this and soon!!The pain management doctors have been complying by the rules and shouldn’t be penalized.Its only hurting the patients with chronic pain!!!!

Janell M Ansell

I greatly appreciate all your help and comments. I’ve been struggling with knee issues since I was a child. I was essentially born with bad knees and now my hips are starting to degenerate. I’ve been to many orthopedics and none will touch me. They say Iam either to young for total knee replacements or they can’t do the surgeries I require. Iam a single mom on disability and can no longer perform the easiest of tasks like shopping or doing laundry. I’ve tried everything from physical therapy to various injections surgeries CBD and Kratom. Iam completely without a doctor pain or family wise.

Samantha Sears

I unfortunately have a similar story from rural western PA. When I was 16 a doctor performed an illegal surgery on my achilles tendon and I have suffered the consequences of it ever since. I’ve had four Achilles tendon surgeries and I’m facing a fifth and this has left me so disillusioned with the healthcare industry and doctors and life itself. After being dismissed suddenly by my pain doctor due to a split in the two major insurance providers in my area despite always adhering to the contract I had with them I was rapidly weaned off against CDC guidelines. I found another pain doctor who prescribed some sort of topical that my insurance refused to cover and costs $100 a bottle. But nobody seems to care. I barely have any quality of life and some days cannot get out of bed because the pain is so bad.

Tami

Janell,
I am so sorry for your pain! I fight a few painful diseases for which there are no cures. My state of Oklahoma has been in the headlines recently for suing Johnson and Johnson. Things in the pain community are difficult here as well.
I’m replying to tell you about my Orthopaedic Hip and Knee Doctor. He’s in Tulsa, Oklahoma, which is the NE part of my state. He has been rated the #1 hip and knee surgeon in the US. His name is Yogesh Mittal, Md. His practice in Tulsa is called The Orthopaedic Center. 1809 East 13th Street, Suite 200, Tulsa, OK 74104; phone 918-582-6800. You should get an appointment with Dr. Mittal. You definitely wouldn’t be sorry. He did my total hip replacement one year ago. It has been amazing!!! Highly recommend him.
What part of Michigan are you in? I’ll ask my docs for a recommendation for you.
I hope you are able to come see Dr. Mittal. He rebuilt my 16 year old granddaughter’s knee over a year ago after a Soccer accident. He said it would have been easier to replace the entire joint but since she’s going to college in a couple years on a Soccer scholarship, rebuilding was the way to go.
I’m praying for you.

Janell Ansell, I’m so sorry to hear about all of the pain you’re in. I too am in a lot of pain. The sentence you wrote in your letter, I also brought to the attention here is that “The CDC only writes guidelines, but Doctors often use them as laws”!!! We should be raising the fact about this and have a better understanding than what they have now.
I hope you the best of health. Brenda Price

Dave2

Cuss him out. Cuss him into the ground. There is a doctor suicide problem and it is because they never see that their cowardice is zapping all the fun out of being a doctor. When you go to the next one, and as we know do the same thing, cuss him out. Make sure it is severe enough that is goes in your notes, …let’s say “has a personality disorder” severe, like me. He still has to see you and it might even work. I speak scientifically and normally and friendly to the next one and let them swallow that, another example of turning it back on them. At least they know that we know they are unjustly failing us. If docs don;t stand up this will end end for much much longer

Voakley

I am going through a similar situation. The only difference is, ever since my pain managing doctor shut down her practice, I have been without any medical care. I also am in a rural area in Florida.
I found a general practitioner, but all he will do is give referrals to other doctors. When I call to make appointments I’m told pretty much the same statements from each office. Like this has been rehearsed.
I was under the care of an amazing doctor, who actually established relationships with her patients for about 14 years.
My pain was stabilized during that time. One can only imagine what happened when we were given one month notice that the practice was closing down.
Over the next year I diligently worked hard to get into another doctor.
The only response I received from any that allowed me an initial appointment was more MRI orders and more referrals.
On top of all that is going on, if you manage to find a doctor willing to treat you at all, the pharmacies will not fill out of county prescriptions. And most will not fill your prescriptions if you are from out of town.
So here in Florida the doctors are so far and few, with pharmacies not able to help either, if you do manage to find a physician who is out of your county
I have noticed there are vast numbers of urgent care centers popping up all over. That does nothing to help those of us who are in need of a monthly practitioner.
The doctors that I have been able to get an appointment with have all changed my medicine. Meds that I try, that have now created havoc in my life, cause side affects that I’m not used to, causing my physical pain and now mental pain to become out of control.
FLORIDA PLEASE HEAR US AND HELP OUR PAIN COMMUNITY GET BACK OUR QUALITY OF LIFE
If anyone knows any physicians who are helping those of us who are in need of a compationant, understanding, and a true physician please let me know if you don’t mind.
My email address is:
visaoakley1@gmail.com
The work I do is extremely tough. Such is l

Tim

Janell
Plse write to me at:
tagdude@webtv.net
I have run a TN Support Group for the past 20+ yrs in Suburban Detroit!

Lisa K. Jones

What can we do?

Lori P

I have been dismissed as a patient from so many doctors I have lost count. I too had the guidelines versus law conversation and was basically told to shut up and do as I was told. That visit ended with the nurse threatening to call the cops to have me physically removed. I told her to do it, I would wait. Had my husband not been with me I would have ended up in jail. I am just so sick of all of this. I an not a drug addict. I am a chronic pain patient. I have tried anything and everything and only opioids work. I do NOT want to try all the [edit] that did not work again. I have never failed a drug test yet I am denied my meds. If I were I drug addict I would not have any of hydrocodone that I squirreled away when I saw what was coming left. I have been without a prescription for almost 2 years. An addict would not be able to just take the hydro only occassionally like I do. I take it when I have to leave the house and function for an few hours. When I run out, I am smart enough (or dumb enough) to know how to get it without a prescription and I will do so. I have no choice. I am beyond fed up and I have zero trust in the medical “profession”.

Lisa

Sadly this is happening everywhere. My doctor had me on 120mg oxycodone a day for 9 years and then the opioid epidemic began and the CDC guidelines came out and he dropped me down to 45mg a day. He first started telling me the MME for chronic pain patients was 120MME, then 6 months later told me it was 90MME and just last month told me it 45MME. Hes happy keeping me at 45mg a day BUT I’m not as my life as I knew it ceased to exist and I no longer live a life I just exist day to day.

Doctors are NOT suppose to cut patients off cold Turkey and if I’m right I believe you can file a malpractice suit or a abandonment suit against them due to the dangers of patients going into severe withdrawl causing some to commit suicide and others to end up in emergency rooms.
I believe a doctor in Rhode Island was just charged and convicted of doing this and was the first in the Country to be convicted.

I read the story here but may have the wrong State.

I’m sorry this happened to you. It’s very tough for people like us these days and a lot of damage has been caused due to the CDC recommendations.

David Wasserman

Look into local Centers offering Floatation Therapy, to see if said use of commercial rented floatation tanks [pods] brings relief…a series of sessions can do so and has done so for many people. Natural, healing, transformational!

Janelle throughout the national pain report people in chronic pain leaving messages including myself being in your same situation. There is no protection for the Disability Act, there is no protection for chronic pain people, there is no protection between patient & physician, between patient & Pharmacy, between patient & insurance, between patient & Medicare. There is no protection for the patient at all. We are at the bottom of the totem pole. When something goes wrong we are the ones that are blamed. Even if something doesn’t go wrong but the physician just doesn’t want to do it, guess what they create a issue to discredit you whether it is fictitious or not. The finger has got to point outward not inward. All the companies mentioned above has control over the patient & is believed over the patient. We are SOL. System is game against the patient whether you’re dealing with opiates or not. But being a chronic pain person you’re up the creek w/o a paddle. Just saying you’re chronic pain person overshadows any other medical care that you get. By overshadow if something happens the blame goes back to you. We have a Target on our back. It is rigged so the patient does not win or even have a say so in any manner. what is worse is the trust that is broken between the patient & all these companies & especially the physician to label,drop or Blacklist a patient is about the dirtiest thing a person can do. Making it impossible for that person who’s in chronic pain to find a new physician . Like handing them a death sentence . You have a right to contact the company that did the urine test & get your urine results. Do not go Thru the physician to get urine test, go to the company that did the urinalysis. you’ll be surprised that you’ll find out that you were correct. I have a big suspicions that the Physicians had called that company bc they’re in business together & say rigged that persons test.

Pamela

If any of you have been dropped by your doctor, file a complaint with the Civil Rights division of the Dept. of Justice. Talk to the ACLU. Complain about them violating HIPAA laws and the Americans with Disabilities Act. Send your stories to the news media. File a complaint with your state’s medical board. Selma Medical got hit for violations of the ADA. The ACLU is fighting the illegal use of the PDMP (Prescription Drug Monitoring Program) and the discrimination against chronic pain patients. If your doctor doesn’t want to see your articles you bring them, then start printing them out and sending them to their offices anonymously, addressed to individual doctors. Join the CPP News Source (or other FB info pages) and the Don’t Punish Pain Rally’s National FB page (and your own state’s DPP Rally page). Send your stories to Sen. Lamar Alexander… he has asked for them! He wants to hear from you. If someone you know has died from massive strokes or heart attacks because of uncontrolled pain or has committed suicide, contact Dr. Thomas Kline. He is keeping a list of those stories. Red Lawhern is another great advocate and just published an open letter to the Virginia Medical Board that is absolutely fantastic. Look it up! Keep your heads up, we ARE fighting!

Don

Being in the same boat in Florida I am being forced tapered. Bottom line I refuse to live in pain and found that indica cartridge work awesome on pain. About 3 doses just before bed time has worked better then any opioid. You shouldn’t have any problems finding that in Michigan which is my home state. I would recommend the strain called purple grand dad works best for me, It high in thc and cbd. Best of luck to you and your not alone.

Hi warriors. I came across an Online Petition about Chronic Pain. I think we all must support this and make our noise louder. Please sign it for us: healthcarepetition.com

Laurie

I just read a Guardian article from 2018 and it documented the way docs had been prescribing way too much pain meds since the 90’s. Now, they’ve gone the other way as we all know.
THEY caused this problem, but they’re taking it out on the patient and some docs. I don’t know why they can’t find some sort of balance!
First, they get some of us addicted and dependent and now, they cut us off. And YES people DO die from withdrawal. What an ignorant doctor…there are so many. We’re just a hassle to them now. Some medical care!
Good luck finding one with the police state medicine we have now.

PS: I’m being cut off too after 30 years. Nobody ever “threw pills” at ME and I was in desperate agony.

Spencer

I have some of the same issues. I slipped on ice and shattered my coccyx when I was 16 and 1 year later I had it removed along with part of my sacrum. when I woke up from that surgery I never felt the same and always had this different kind of pain that I can’t describe and I can only describe it as nerve pain it starts at my low back and moves down both legs it’s horrid and feels like a flamethrower. I’ve been through the candy shop and had every kind of opioid and I can tell you that no opioid can even begin to give you the type of relief that medical cannabis does. go to a state where it is legal and try “live resin” or edibles and start at 25 mg THCfor edible. You will see night and day difference in how well your pain is managed and how much better cannabis is for killing extreme pain and stopping depression. I have an intrathecal medronic pain pump with fentanyl etc and there is information out saying that prolonged opioid use degenerates and in flames nerve endings causing more pain. You should also try a Boston Scientific brand spinal cord stimulator. The spinal cord stimulators are never perfect but they work very well sometimes.

Thomas Wayne Kidd

I told family members who live in Michigan a few months ago that this was going happen. I am thankful that here in Kentucky the pain clinics are still treating patients but not like they were. Seems that my pain doctor has actually read the CDC recommendations. I feel for you and I will pray that you can find another doctor who will be brave enough to treat you. God bless you and thanks for your comments.

Gary Priebe

Why are these Doctors lying to their Patients telling them the CDC recommendations are LAWS? And if you know that it isn’t true then they don’t want you as a Patient and will do whatever it takes to get rid of you. I had a so called Pain Doctor who worked for Kure Pain Clinics out of the state of Maryland. Dr. Travis Lee he released me from treatment also because of a bad urine test. Totally wrong but they are getting away with it and don’t care about their Patients.

Steve

When legal access to a product is stopped or restricted the black market fills the void quickly and efficiently as we have seen.
The CDC/DEA/FDA are a conflicted herd of turtles trying to please their corporate and political masters. Chronic pain patients are the least of their concerns.
Most opiates are reasonably priced relative to the costs of other pain treatment therapies. My annual cost for 60 mme a month is $500. The two rf ablations I had last year were only $34000, add a nerve block and steroid injections and we are at $50000. By the way, only the nerve block worked (for about a week). Opiates are the most cost effective treatment for chronic pain. Let pain management be decided by patient and doctor.
The N.Y. Times just recently had a story about how much data the DEA, manufacturers, distributors, and pharmacies had (and ignored) for years. It would not be hard for them to identify abuses of the system and get rid of these few bad actors. Lord knows when all of this will pass and people will be treated with dignity again.

Ron

Hi Janell,
I really think you have to attack the source of your pain at this point. There is no rational reason you should not be able to get knee transplants if needed, even at your age.
I don’t know of your financial situation, but I think you really need to get to a large city University Hospital, or the Mayo Clinic to get the proper diagnosis and treatment.
In my case, Being in chronic pain iI I required a back operation which I underwent at a University Hospital with great success.
Please, be well and use any and all of your resources to get the PROPER diagnosis and treatment.

Jan Fulton

Jane, this is a horrific nightmare. Your docs are willfully withholding pain medication and they are doing it at your expense. As we all know who suffer the legislature did back off their stance and agree to treat patients as individuals. What a concept. Were you allowed to go through withdrawals without any help? That could have killed you.
Our doctors are scared our legislators will take their licenses. Your doc couldn’t care less about your pain. I would call your legislator and tell your doctor he/ she will be reported.
Stay in contact with this site and report what is happening.
As of today July 21, do you experience pain and do you have anyone that is willing to prescribe pain medication?
Jan
Janfultex@aol.com

Sue McManus

This is crazy. It has gotten for pain patients. I have been diagnosed with whole body CRPS since 2005. I had a great dr until I left for Florida. I have been unable to find a pain dr since leaving Denver 10/2016. I have been called an addict by numerous drs. I have been told I am not in pain and don’t have CRPs which is crazy because it is incurable. I finally turned to natural herbs and frankly, I am better off.

Ceil

I feel heart broken for Janell. Unimaginable to go through that. Others have said their doctor refused them because they failed a drug test that have said they don’t use anything other than prescribed.
I have zero faith in MD’s! So many people suffering from failed surgeries but the doctor got paid.
Maybe time to relocate to Mexico. In the meantime, Keaton really does help. I’ve been using it for 4 yrs. The drawback is it requires a lot of capsules per dose. It’s very bitter taken in tea. But it helps. Also Wild Lettuce is available on Amazon and has promising reviews. I haven’t tried it

Tessie Rockwell

Janell,
I am so sorry and more than heartbroken to hear of your story! I so badly wish there was something that I could do for you or recommend some kind of pain managements physician to try, but I live all the way in Tennessee so I have no idea of the physicians available in your area. I did however want to reach out to your post and story, and tell you that I am praying for you, and I am praying that you find relief and an understanding and caring physician ASAP! Although our stories our different, they are similar in regards to chronic pain and the difficult times of trying to find a physician who actually cares and will help you! I am 29 years old, with two back surgeries down, and still no relief in sight, even with being treated by pain management (but without pain management I couldn’t even get off the couch to shower, so pain management has made me somewhat functional, but a LONG WAY OFF from where a 29 year old should be). I’ve also heard it over and over regarding receiving actual treatment for my back issues due to my age, which is just so disgusting every time I hear those words again from a doctor. I may only be 29, but that should give even more reason to actually fix my back, without just putting a band-Aid on the problem, especially since I’m 29, and functioning as a 80 year old with the pain level of such as well. So having said all of this, I just wanted to let you know you’re not alone, although even with me saying that, it feels very much like you are everyday! But I am praying for you, and for God to bring a compassionate and helpful physician into your life!!!

Tony Hardy

I have only information for a doctor in Florida, in Fort Lauderdale. Email me back at hardyytony@gmail.com if you are interested

M W

First I would like to say I’m sorry for the position you’ve been put in. I know how hard it is to get a Dr. to work with on pain meds whether it’s a PM or a primary. Your story is exactly why I’ve stayed with the same PM doc for the last 5 years. He’s never acted interested in my health issues nor does he ever sit down & really have a conversation about how I do on my decreased dose of meds. He has said the same thing yours has said about increasing it or changing to something more powerful, then when I’ve talked to him about it he says he never said that. I’m deathly afraid to change Drs because I could very well end up worse than where I am now. I’ve told him the same thing about “guidelines vs rules or law” but he doesn’t care! I just pray everyday that my pain doesn’t get worse, but I know my RA is doing that already. He actually told me that arthritis doesn’t fall into the pain management category.

Sickened

Kratom hxG5s

James McCay

Dear Janell, I’ve been through EVERYTHING you’ve been through and FAR, FAR WORSE! I won’t judge, just want you to know some facts.

I know you won’t understand some of my diseases, but trust me when I say what they cause. I have Advanced Myasthenia Gravis aka MG (like Muscular Dystrophy and Multiple Sclerosis combined plus so much more), Degenerative Disc Disease (6 massively herniated discs in my neck & lowest back w/pinched nerves) and Fibromyalgia. I have an XL hyperfunctioning Thymus Gland that blocks all new meds from working, and old ones don’t work right. This is directly related to my MG (inoperable).

Generally, Methadone is a last option medication for pain (which I’ve been on for 16-years). Why? IT BLOCKS EVERY OPIOID FROM MORPHINE ON DOWN FROM WORKING! So it’s my opinion that your Pain Management doctor HAD NO CLUE WHAT HE WAS DOING! Oxycodone (even 90mg a day); WILL NOT WORK with Methadone (40mg a day+).

The withdrawal for Methadone can cause DEADLY seizures (if not weaned slowly)- FACT! Withdrawal lasts 21-days (unlike the short withdrawal for alcohol or heroin). Another opioid will cause withdrawal symptoms to stop.
I went through the full 21-day withdrawal and if I had any strength to kill myself, I would have! The non-stop seizure like vomiting & increased pain for 13-days would make almost anyone want to die. I ate nothing for 13-days & forced sips of water. When finally rushed to a hospital, I was so dehydrated it took FOUR XL saline solution bags (wide open) to get to near normal!

I know that Michigan is one of those states that has one main Health Group that buys up EVERYTHING! So no matter where you go, the doctor has ALL your medical records from the past! Even stuff you didn’t know existed (like the failed urine test). In this stupid “WAR ON OPIOIDS” climate of VERY PARANOID doctors & hospitals (even the “best” Pain Management doctors); you are not in a good situation. No one in my state (NY) would see you either.

Michael Kastner

My Dear Janell,
I am in Northern Rural California and am so sorry you went through this BS. These doctors are NOT living up to their Oath. I wish I had great advice for you but I see this all over the Nation as you do.
Perhaps calling your local AMA for advice or referrals and or your insurance company
It is a travesty what they have done and are doing to us Chronic Pain Patients.
I personally finally got referred to Stanford University Medical Centers Pain Clinic after a year and a half of pain so bad I wanted to die. It is 6 hours each way.
I still have to wait until Sept 9th but compared to how long I’ve been in pain with little to no life I can wait.
Do you have a University Medical Center?? My hopes are maybe they can help you ?
Please take care. You are loved by people you don’t even know
Michael

Gretchen

So sorry for the trouble you are having seeking new pain managment. My Dr in Ohio is disrespectful yells and screams at nurses and patients I don’t like him much tried too find another Dr myself because of the unprofessional disrespectful interrogation I am put through monthly I tell people and family about what goes on in this Drs office and they tell me why don’t you find a new Dr there are none too switch too I think that is why this Dr thinks her can violate hippa laws and act the way he does Thanks too the US Government practicing medicine without a license pain and disabled now live in a 3 word country and are treated like [edit] only in What used too be America is it ok too now treat the people who need the help the most like we are criminals I will be thinking of you and sending you my best wishes as I do all who have now been refused care and treated badly because of injuries disabilities or pain. My God protect us and help us through the War that has been issued against us all by the US Government I hope you find the help you need If the environment does not change soon I’m planning on denouncing my US citizen ship and leavening if I care too survive Shame on the US Government for casting us aside because they have failed at their jobs too allow this mess too ever get as bad as it has and unfortunately they blamed us and what they are have and are doing too us is not helping there are more people dying in this country from alcohol and being hurt or killed by alcoholism in this country then drugs and nothing is being done too them or too protect us from them and the street drug overdoses is still rising because the wrong people are being blamed for this fake war against us I’m not one too wish harm on anyone but would not feel bad if the senators of the US were denied care for something that they were not guilty off then maybe they would start too care a permanently disabled women who needs care because of 2 drunk drivers who did not lose their license

Cindy

How horrid. And unfair.

I’ve brought in copies of NPR columns to my pain manager — like when the CDC issued its recent statement about the guidelines — b/c I know how busy he is and I was so miserable on my forced taper. He told me he knew about them but thanked me.

In the past, he frequently asked me about my experiences with medical marijuana. So, I didn’t anticipate a bad reaction from him. Also, when he first explained that he was imposing a forced taper due to govt’ pressure, he showed me the guidelines but not the source; and when I asked him the source, he said Medicare; which I later found out was wrong when I went home and got online, and so I wanted to make sure he was clear on which agency was doing what.

Plus, patients should be able to advocate for themselves.

My former pain doc also kicked me from her practice due to a supposedly bad tox screen and refused to listen to my pleas that there must be a mistake somewhere as I had not consumed any alcohol at all, let alone a lot as that test indicated.

In fact, she never dismissed me. I found out that I’d been dismissed when I called to make my next monthly appt and was told I was no longer a patient. I wasn’t allowed to come in for a spot tox screen and I was also told, in essence, that if I came in and sat until being seen as I’d said I’d do, that they’d call the police.

Icing on the cake: she illegally refused to send my records to my PCP until I got the state Bd of Medicine involved.

Her office admin was truly horrid — lost appts etc, constantly — just sitting in the waiting room forever for each appt and watching all the mistakes was so discouraging. But she was pretty easy to get meds from and so I’d stayed with her even though I so hated her office; and another bad sign — she never took any interest when I told her about admin problems.

The Bd of Medicine said they could do nothing except get her to send the records. No penalty of any kind. Maybe in a more pro consumer state….

Glen

It is frightening even when you have a Doctor that prescribes because he or she may cut you off at any time. Finding a Doctor that will prescribe is getting impossible. Last year a new Primary VA Doctor told me he was not permitted to prescribe. So off to the Pittsburgh Pain Review. Result: “This unfortunate Veteran is racked with reasons for pain, the benefits outweigh the risks, his behavior is likely pseudoadictivr rather than addictive, he has significant pathology to account for his pain, this was helping significantly, he is considered low risk, and within the CDC recommendations, I recommend continuation of this therapy.” THAT SHOULD DO IT, DON’T YOU THINK? The Regional Primary Care Director calls me, “those Pittsburgh Doctors are old school”.

Rosalind Rivera

Dear Janell,
I can say that I feel your pain in as much as my original search for a pain management doctor while residing in the state of NEW YORK. I found wonderful doctors there that treated me as a whole person and managed my pain extremely well.
Even eight years ago, I relocated to California where the first doctor that I found was impervious to my pain. I then found a wonderful pain management doctors that up until several months ago treated my pain very well. When these criminal and suicidal tapering of OPIODS took effect I’m not sure if he complied for fear of recrimination or was forced to comply under the threat of either losing his medical license or prosecution but I will say that that is the moment when my sweetie ft and do re spiral downward began. It has now been close to a year and I am now completely and totally home bound and 99% of the time, I am bed bound. The remainder of the time if it’s a good day, I’m able to use my walker to go to the bathroom and if it’s a bad day then I have to resort to my detested but ally wheelchair. My point? Even if you do find a compassionate and prescribing doctor, you unfortunately will still continue to suffer, not due to the the doctor but due to the criminal statutes and strong recommendations of the CDC, FDA and other powers that be!

The doctors you have are just like mine,whitewashing the issue.You didn’t of course fail the UA test,that’s an excuse they use to discharge you.Then the primaries say they will give you hydrocodone and up it,just to get you as a customer.Then they lie and won’t up it do to some new guidelines.All prior long term pain management patients have been discharged due to fear by doctors,new laws and guidelines,and you’ve been classified as an addict because you use narcotics that were legal and now illegal……

Joyce Noel

We are in Pennsylvania and my husband is having the same issue. He goes to a new pain clinic and before he opens his mouth the doctor tells him he will not write him meds. My husband has back issues that will only continue to get worse. He has been using street drugs to relieve his pain. We cannot afford this any longer since he went on Disability and cut his income in half. He is going un to detox and altho all the people he sees agree he needs pain meds noone will step up to the plate and write prescriptions. I fear once he gets off strwet drugs , the pain will be so great he will commit suicide.

Casey Thompson

I’m so sorry you’re going through this! Last year my pain doc of almost 7 years wanted to leave a practice she merged with two years prior and they weren’t happy bc she was bringing them a lot of money since she was the only competent dr in this area. They set her up and she was arrested unfairly. The county narcotics investigators told all the pharmacies in the area to not fill her scripts and the news dragged her name through the mud! All of her patients went into withdrawal having had their meds stopped cold turkey and a lot of us have permanent damage due to stopping cold turkey and a few died of suicide. When they found she had done nothing wrong, the news didn’t say anything about it, burying the small article in a corner of the website. She’s too effected to go back into private practice again. So sad bc she did so much for me and bc I have a pump I had a harder time finding a doc and have to cross state lines now. Never give them your urine in an unmarked cup. They should have retested you prior to kicking you out of the program. Then your other dr having a hissy bc you showed him proof he was wrong. I’m so sorry! Check with your insurance carrier and print a list of pain docs and make appointments for a consult with each one that you can and interview them. If they’re a good doctor they will have no issues with this. It’s sad bc my current dr said he’d love to up my meds but he doesn’t want to be investigated by the feds when they don’t even have medical degrees. I will pray for you every day (hope that doesn’t offend) because I’d hate for someone to go through the [edit] I did. I’m a medical professional and to be spoken to like I was is so unprofessional. Here’s to good things in your future!

American

Janell, Thanks for standing up for yourself more of us need to do the same! I’ll likely be looking for a new Dr after my appointment tomorrow as I’m reasonably sure I’ll be fired from being his legacy pain patient 14+ years now for standing up for myself and other forgotten pain patients. I was very stable 13 of those years now well… I have printed out some headlines and I’m gonna tear into him much worse than I did already in my previous visit. All I have left to fear is death itself and i no longer do unfortunately. I have lost my little quality of life, lost my due to this war on pain patients and I’ve about lost my mind fighting physical pain on my own and I no longer worry about playing nice to receive my medication all gloves are off and I’m going into the ring swinging as hard as I can. Dr took me from 500mme to 30mme out of fearing the DEA only the 30mme was my breakthrough and now supposed to work as my primary, well I didn’t need a Dr to figure out that won’t work doing this with a patient but I needed a Dr to do it one! I went ahead on my own and discontinued all pain medication after being forced tapered down to something that was not treating the pain alone. I went ahead after that and removed all Pharma went back to the doctor explained his plan was not working and asked if he could switch to a different kind of medicine because I had been on that one for breakthrough pain for so very long he denied me and offered me more of the same medicine that I just told him was not working I denied him and here I am over a year later laying in bed hurting awake 3 days now typing waiting for that appointment tomorrow nothing to lose again but my life and as it is with the quality of my life stripped away from me being bedridden when I know it doesn’t have to be this way and I’ve had a taste of a different kind of life my life is as good as gone anyway so what the heck does it matter at this point. I hope what we say to Dr’s now helps someone in the future TY

Denabeana

Janelle, you are not alone. I only wish I had more guidance and hope to pass on for you and others like us. Unfortunately there is no end in sight for chronic pain sufferers who are in search of real pain relief. My story is similar with different complications. I fell down stairs at my workplace, I suffer with herniations @ 5C/disks,4L/disks; stenosis, kephosis, etc…I’ve been told; I’m a number, no different than the other thousand patients seen in these offices, that pain is in my head, get over it, move on…. the list is endless and the doctors are becoming increasingly impatient with us. I used to be a advocate for people with Mental Illness and that was a challenge in and of itself. Now, since my injury I no longer have the strength to help fight. Most days I can’t get out of bed, let alone do self care, housework or feeding my family. People like us will continue to suffer and addicts who are true fakers and have no legit medical reports and /or imagining to back up their claims will continue to be served in ways that should be reserved for us. I have a genetic disorder that completely blocks lower grade narcotic pain meds, think codeine, tramadol, hydrocodone. And oxycodone works but only in large doses think 90mg daily, not this 90MME bull… I have too, brought papers to back up my knowledge of my condition and doctors don’t want to hear we ourselves know better of our own health than they know as doctors. They put us all in one category, were all drug seeking addicts. Yet the addicts who truly divert their meds to buy drugs or the drug dealers are the ones walking out the office with anything they ask for. I’m about to give up and give in to my pain and call it quits. Yet this part of me who has advocated for others in this state of health and mind says to stay and fight. I’m torn between my uselessness as a wife and mother and member of society and my need to be released from my pain.

Cynthia Gwin

I’m so sorry you are going through this. I cannot imagine being dealt this hand of cards, but is there no chance you can move to somewhere more compatible to your needs? I know that is a burden, but living in pain, (I don’t know your level of pain), is no life at all. I moved recently from Texas which was very strict and tapering me off my meds, to Georgia where they are not. Making it totally worth the expense and trouble.