Doctor, Doctor – Are You Listening to What She Says?

Doctor, Doctor – Are You Listening to What She Says?

This journey of mine, through chronic illness and pain, has shown me many things about a community that I never thought I’d become a part of. A blog that began as a way for me to cope with my ever-changing world, has evolved into work as an advocate of chronic illness and pain for a community that needs to be heard. I know I am among many who have pledged to give voice to the pain of this community and shed light on the many struggles we share, and I am very proud of that. However, as a part of this community, I am always pained that what unites us in so many ways, is illness and chronic pain. But if I can reach even just one person, and make them think, I feel I have done my job well.

One of the things I have found that we, in this chronic community share, is our complete and utter exhaustion with doctors and the medical community as a whole. When you first venture onto Twitter or Instagram and begin connecting with people, one of the first things you begin to see is the trepidation in which we go into new appointments. There is an inherent fear that we will: 1.) not be heard 2.) be told that it’s nothing a little diet and exercise can’t fix 3.) be told it’s all in our head. There are more, but those are the basics. There are thousands of us out there, if not millions, doing this ridiculous game of trial and error with doctors, hoping that we’ll eventually find that rare and elusive creature, who will listen and be able to treat us. Our health should not be compromised- many of us for years- until we finally get a doctor who can diagnose and then go on to treat.

Think about this for a minute, those of you who have never had to grapple with chronic illness/pain. Think about how you would feel if you were sick, miserable for weeks, unable to determine what is wrong with you and when you finally going to the doctor you are completely, and utterly, let down. Not only do they just blow you off, but try to send you home with anti-depressants and send in a nurse who explains to you the merits of a good diet and good sleep. Meanwhile, you are back at square one, not knowing what is wrong with you and now, afraid to seek out any more help. But it is that very illness, and the desperate desire not to live with it, and regain your life, that drives you to seek answers and go to more doctors, where you are let down again and again until you begin to wonder if it is “all in your head,” until you find that elusive creature and are finally heard and given name for what has been causing you torment- six years later. That is not a typo and for women, it is sadly, common. Take something like endometriosis, which affects one in 10 women, yet still takes, on average, seven to eight years to be diagnosed. (Schopen, 2019) I’ve spoken to women who have endured six years of their health in chaos before finally getting help, others less. Some have seen upwards of 17 doctors, while others less. I count myself lucky at 4 years and 10 doctors, but it shouldn’t be this way.

If I could be granted one wish, it would be for the medical community to understand how their disregard of chronic illness patients on the whole, and more specifically, their disregard of women’s health, has affected us. You have women, young and old, who look at their medical professionals with a skeptical eye because we have been treated like over-dramatic teens for much of our pre-diagnosis illness. We’ve had to become educated in our illness, reading volumes upon volumes of research work, articles and books, to become our own expert and advocate and in many cases, we’ve had to educate our medical professionals on our illness. If you think this sounds ridiculous and I am over exaggerating, I can tell you that I am honestly not, but it would be easier and far more illuminating for you to take a dive into Twitter or any platform with chronic illness groups and ask.

We still live in a world designed by men, for men. There is an incredible amount of gender biased research that still exists. For instance, this troubling fact: nonsmoking women are far more likely to get cancer than nonsmoking men. However, lung cancer research frequently doesn’t break down data to gender specifics, as learned by a recent study done by Brigham and Woman’s Hospital and George Washington University. (Barlow, 2019) The bias continues, touching on medical research with mice. In Sorge and Mogil’s research, investigating how animals develop an extreme sensitivity to touch, which they hope will one day help pain patients, they admit that they “never would have made their discovery if they had followed the conventions of most pain researchers.” (Dance, 2019) It is interesting to learn that a couple of the main reasons why pain scientists have gone with male mice is: because they worry that “females’ hormone cycles would complicate results and male mice is just how it’s done.” (Dance 2019) In response to their studies, many scientists are now using both mice, as they are finding how invaluable both sets of data are. “In 2016, the US National Institute of Health (NIH), made it a requirement for grant applicants to justify the sex of animals used in experiments.” (Dance 2019) While this is a definite step forward in how we obtain medical research data, it will still take years before much of this research can be synthesized to see how it can best be applied to the treatment of women.

This is a very female-centric piece. I feel strongly that women’s health has suffered, not just in clinical care but research, because the field was pioneered by men and change has taken so long to shift that. I have an understanding of medicine being very steeped in tradition, however, there comes a time when traditions must change in order to harness new information that could have the potential to change lives. I do not think there is a better time than now, to make these changes so that women can have better lives and the trust that has been lost, can be regained.

Citations

Dance, A. (2019). The Pain Gap. Retrieved from https://www.nature.com/magazine-assets/d41586-019-00895-3/d41586-019-00895-3.pdf

Schopen, F. (2019). The healthcare gender bias: do men get better medical treatment?. Retrieved from https://www.theguardian.com/lifeandstyle/2017/nov/20/healthcare-gender-bias-women-pain

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Authored by: Liza Zoellick

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

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Reece

I feel like the doctors have just “checked out”. The majority of them just don’t care. The young doctors act like taking an opioid is a sin. “Just take Advil or Tylenol” and everything will be fine. Some of the older doctors understand that an individual with chronic pain needs more, but they are afraid to write the prescription because they “FEAR” being reported by the pharmacists. I ask my doctor if he ever goes to the pain foundation and reads some of the things that patients are going through and supports what the Pain Foundation is trying to do. He told me, “No, he doesn’t have time,” . So, where do we go.
The Doctors have checked out, the ER turns chronic pain patients away, the Pharmacists have turned into the Police Patrol. What happened to “DO NO HARM”.

Lisa Hess

Great article Liza. I heavily believe geographic locations in the US where patients live has a lot to do the type of care by doctors who have empathy and can treat us, the patient as we should be treated. When I’m told by a doctor that I have to see a new doctor for a new illness, first question is always “is this the doctor you would send your wife or mother too?” Another practice I do is read the doctor’s degrees on the wall. Did they get their training in the US, Mexico, Turkey? Many Americans who couldn’t get into Med school in the US go to other countries to get their education and residency programs. If I’m in an office and see the training took place outside of the US, and the first appt goes bad, I don’t return. I live in the the Northeast and am lucky to have access to some of the best medical professionals in the country. Unfortunately, it also limits me that I will never move out of NJ because I see a lot of specialists. I know if I go to another state, all the good care and rapport I’ve developed with my doctors and pharmacists goes out the window and I will be denied the medications I need to get out of bed for a couple hours. I’d give all I could for an F.Lee Bailey type lawyer. That’s the kind of lawyer we need to do a Class Action Law Suit against the CDC, DEA and FDA. The lack of empathetic care has gone out the window and we suffer without our medication. Fear has taken the place of palliative care because of the government’s misgivings to the world. I can’t get a morphine pump and it’s the only thing we haven’t tried to relieve my pain. However, I’m on Medicare. Medicare will not cover the medication for non-cancer patients and is $2K/month out of pocket just for the medicine, I tried to get private insurance, but between premiums, deductibles, and co-pays I’d be living on the streets as the costs will put me there. I’ve been through over 30 doctors in 22+ years and stick with those that I get good vibe the first moment we met or I walk.

davidkenberg kenberg

I’m in the hospital because of a infection in my large intestine and they werent giving me my meds that I fought so hard to get for 17 years of hell with full body rsd. My infection is very painful and the pain med that they give u barely cuts the pain. I’m so sick of fighting with some medical professionals that are now trying to put the heat on us sick people. It’s not our fault that there’s a opioid abuse. I never abused my meds. I was seriously injured by a driver on his cellphone and we were hit 2 times in same accident and the rest is history. I think after 17 years of serious history there would be no question at all. I have a lot of things in my body and outside of body to help me but everything is a tool for us.I worked so hard to get to this point and i have to fight for 4 pills 4 times a day and none are narcotics or opioids. Iv always fought really hard to not take those kinds of drugs. I was thinking of talking to a lawyer to fight for my rights to be out of pain and the severity of suffering. My story has helped 3 people and are doing what I had to do. Drs, please stop hurting us by making us suffer because of other abusers. REMEMBER DO NO HARM. I would like some quality of life. By the was I read most of the nightmare stories I’m right with you and I hope we all stop being in pain. Titanium plate and screws, neck, lower body fusion cages ,ect. Now I did 7 day trials for upper and lower body stimulators and they help. Full body rsd/crps, in my head,eyes,nose,mouth.throat, whole torso,extreamly painful ribs,bones,joints,Ect. Thankyou for reading my medical nitemair. Hope for all 2006

Thomas Wayne Kidd

For most of my 30+ years dealing with uncaring so-called medical professionals I am not trusting doctors at all. I am amazed that I suddenly realized that most doctors have no clue about what they were trained(?) to do. I remember having a doctor who actually cared about me and his patients and would listen to them. In this God rejecting society the pursuit of wealth is the driving force behind most people’s lives. Care for the sick and dying is just something they feel they must put up with in order to get their pay so they can continue with their lives of pleasures and self- gratification. We are unfortunately living in the evil time near the end of this world. Those who will not believe or even try to understand this fact will continue to suffer being mistreated by those who we go to for help. Judgment is coming to those who are to blame for our mistreatment and abuses, and in their’s and our life time. “Behold, the righteous shall be recompensed in the earth: much more the wicked and the sinner.” (Proverbs 11:31). But sadly most people, both doctor and patient have turned away from Jesus Christ and His teachings. I will exhort all of you out there suffering in this pain and insanity which has been thrust upon us to seek God and His Salvation and begin to trust Him. I would not be here today if I had not found Salvation through Jesus Christ and His sacrifice. Suicide will continue with those who have not His Spirit. And to those who think that they can receive forgiveness before taking their own lives, think again. Sin cannot be forgiven before they are committed. It’s foolishness of the heart. “The heart is deceitful above all things, and desperately wicked; who can know it? I, the Lord search the the heart, I try the reins (thoughts and intents), even to give every man according to his ways, and according to the fruit of his doing.” (Jeremiah 17:9-10). Seek the Creator will there is time. Once we vacate our earthly house there’s no hope.

Once my gp saw I was a neuropathic CPP and being lowered to 90 frpm 450 giess he figires I am terminal so cannot get a pre auth for a softener. Giess he sees me not worthy of time so why bother? With meds we might live 5 years but at 90 mme months only!

Mary

My Dr is clearly aware of the causes of my chronic pain. Yet he continues ignoring my plea for relief. There are several other patients (females) ,seeing the same Dr. And they get to go to the pharmacy and fill their script with adequate pain relief medicines. I have to order my records after every test. Because my Dr won’t even take the time or interest to address or discuss results or treatment plans with me. I know I have rights! Do any 9f you know a good lawyer who will help me stand up for my rights? One who’s aggressive, and not afraid to use his credentials. Please let me know.

Billie McCurdy

I am a chronic pain sufferer I have just about lost everything. I could spend a whole day telling you stories. My concern right now is to Gail Honadle who replied on this site. Has your niece and her son gone to the public media to see if they could get help? For those of you reading my response look through the other responses on here and you will see what I’m talking about. (Response from Gail Honadle)How can we hear in the United States not help a 13 year old boy with MD? If anyone on here knows how to help this lady and her niece and her nieces son, Please do something. If you know how to get in contact with her.

Barbara Snow

To Steve Abby, Please don’t leave us yet. I know a product that will work. I have been constipated for 30 years. There are 2 thing’s. Eat straight up shredded wheat in the morning and evening with warm water. And buy some Smooth Move tea. It will work. You can get the tea at the store.

Notasheep

Heather Boy do I understand the fat prejudice. I got fat years after my disability began as I became worse. At 4’10” went from 98lbs. wearing a little girl 14 pants to almost 200lbs. and wearing a size 22 pants. I am down to 150 now and size 16, but it’s from literally having enough pain to be nauseated. I’d rather be fat and happy!

Laura

This is true for women who end up with chronic pain and disability from accident trauma also. My diagnosis has been clear since day one. Yet, I’m constantly dismissed and ignored. I’ve been told countless times that I’m making a big deal out of nothing. I’m always polite and respectful and I’m still treated like worthless trash. There is something seriously wrong with doctors and the healthcare system.

Nancy

If medical professionals were blessed (I’m sure they would say cursed) with the ability to feel exactly what a patient is feeling, in exactly the way that said patient is feeling (no matter what their physical symptoms might be), it would revolutionize medical care and stop all the “malingerer” “it’s all in your head” diagnoses.

Love your article! So accurate, yet reveals a sad Legacy of patient undiagnos suffering ,wasting patient money, insurance cost, why America has the highest cost of medical care but lowest results. And it getting worse!

Steve Abbey

I am sick of feeling sick it is time to die!!!!. My new meds cause me chronic constipation, I need a enema every 4 days I have tried everything over the counter. I want to go back to where I was 2 yrs ago but no!!! it is time to die if I can just do it soon!! I am not an addict why won’t the cbc listen, now I gotta die asap good bye!!!! .

Gail Honadle

Dr. Darryl George
Very well said, Medicare/Tricare Life are totally Government Dictated as you know right down to the number of days in a hospital stay, you can still be very sick and you will still be discharged. They control the Meds and Tests with NO RIGHT of APPEAL. FDA approves Bad Drugs, those Black Boxes should read “IT WILL KILL”. CDC is not some Vaunted institution, it’s run by humans with political, financial or personal interest.

My Niece has Lupus, Lyme’s with all the organ failure that goes with Lupus, Kidney, Liver, Lungs, Emphysema and FMS plus 2 botched knee surgeries, she is slowly dying. She is not 30 yet her son has early onset Duchenes MD which is the worse from of MD; he is just 13, not even his granddad’s Neurologist will see or treat him. Nor give him a clear diagnosis despite being Gene Positive. He has been in Speech therapy since Pre-K. He a slight child with weak muscles, life span and health could be improved IF he received treatment NOW, not when he can’t raise his arms any more. Duchenes MD is a Death sentence when it’s early onset. He needs the protection of the Disabilities Act and the Right to Try. He’s picked on, beaten, made fun of because he can’t speak like other children nor ever will. There are Pediatric Neurologist within driving distance if the Adult Neurologist doesn’t want to treat a teen, he could be referred to. Yes Being Tenn-Care means Referrals are needed.

Samantha

I’m almost 55 now, back in ’99, I finally found an MD willing to “scope” me after 10yrs of being told AND CHARTED as being a “malingerer”. He removed a mass the size of a grapefruit and half my female parts that were all tangled up with my colon, urinary tract etc. You can’t imagine what I put up with and was put through before finding this particular MD. I grew up with severe colon issues, being impacted most of my youth as well
I’m realizing now, that a hernia operation I had when I was 3, (which also left me with docs saying I’m lying about never having had a 1960’s C-section,) exacerbated a LOT. who knew… Maybe MD’s should have!

susan

Thank-you for your article. I suffer from chronic pain issues. I have multiple sclerosis. Had 3 back surgeries. I am disabled and SSDI is my income. Very well written article about women and Pain issues. I am 63 years old female.

Rochelle Estes

Liza, you are so right on in every aspect of seeking medical care for CPP’s or any chronic illness. I have not been treated for my 9 chronic health conditions for 6 years. I have tried, believe me. I moved to a new state in 2012 only to find the Healthcare in this state in regards to quality and availability is unacceptable. I’m talking about a big city here. I don’t think there are any pain Clinics left. I’ve had referral after referral but nothing ever becomes of it. No one cares as they say.

Congratulations, Lisa, on putting that out there. Doctors who have lived the female experience are reaching retirement age in substantial numbers, so at some point their clinical and personal experience is going to overlap and yield significant insights.

Meanwhile we’re all stuck living in the present. The fact remains that all of the anxiety and distress we experience when meeting a new physician to discuss an old problem, makes us appear mentally distressed. Damn few doctors do a clinical rotation through psychiatry and learn to communicate with distraught people. This is ludicrous,

Unless one specializes in treating teenage acne, anyone’s medical practice is going to encounter very sick patients who are very fearful about what’s happening to them. Learning to communicate with distraught people is an essential skill for doctors. Writing people off as “emotional” simply is a complete abandonment and failure to treat the patient. If the doctor was having a heart attack, would he feel a sense of fear about that shortness of breath and chest pain? So why blame the patient for feeling the same way??

James McCay

Lisa Zoellick: thank you so much for mirroring my feelings. I spent 16-years of my healthy life (which ended at age 34 in late 2001) learning the medical professional from as many angles as I possibly could as an EKG Interpretation Technologist and Trainer. But that did NOTHING to prepare me for what: doctors, hospitals, Obama & Hillary, and the CDC’s insane “War On Opioids” has caused Chronic Pain patients like us.

I’m a man with the sympathy/empathy of a woman. I’ve never once laid a finger on a woman in anger, and never cheated on even a girlfriend (yet they’ve cheated on me!). I’m 52 now, so I’m no longer ashamed to admit that to anyone.
I’ve had Chronic Intractable Pain (almost untreatable from Advanced General Myasthenia Gravis and Hyperthymusism, Degenerative Disc Disease (6 discs in the WORST places), and Fibromyalgia. I’ve been in minor pain since late 2001 & became homebound and mostly bedridden by 2009 as a Chronic Intractable Pain patient. With Myasthenia Gravis & an XL Thymus Gland that’s hyper; general anesthesia will kill me, physical therapy (other than minor stretching I got my body used to many years ago) is also not allowed with MG. My Hyperthymusism blocks most medications (98%+) from working. The few that do work need VERY HIGH doses like 300 mg Methadone a day (150 mg b.i.d) for 7-YEARS! CDC no/no now.

In 2010 I lost my NYC Medicaid for good. Then lost other benefits in 2015 of which I only got back the Medicare Savings Program (MSP) which took a full 33-months of fighting as often as I could (no family or friends to help) & NO State/City help whatsoever to get just the MSP back (no monthly Medicare copays), but then in 2015 doctors started charging me copays that no one ever charged since 2003 in NY? On SSD only…

Thanks to our TERRIBLE crooked Mayor & Governor in NY State, health care in NYC is worse than it has ever been! Please HELP NY State, someone!

Cindy

I’m glad for this column, but, I wish it also mentioned how race bias also affects research, with women of color being on the very bottom of the list.
fyi, I am white.

Also, this is the main reason that i go to women doctors whenever possible.

But exceptions to the rule — I love my current pain manager, who is a man.

My last one, a woman, treated me like a criminal due to a tox screen which showed high alcohol content. The thing is that I never, ever drank any alcohol, and so clearly there was a lab error — or more likely an error in her office which had the worst admin I’ve ever come across. Not infrequent lost appts, inability to follow up on requests to send medical records to other docs, etc. And, I have left docs I liked due to terrible office admin.

With this last pain mgr, I constantly thought about leaving due to the admin problems which she did not care about when I mentioned them, and due to her lack of bedside manner, but, she was the only woman pain manager in the area, and most importantly, she gave me my Rxs w/o any hassle.

What happened was — I called to make my next monthly appt and was told I was no longer a patient. That made no sense to me. Finally I was told that I’d been discharged due to a bad tox screen. My denials and crying made no impression. My offer to come in immediately for a tox screen was denied, as was my request for a meeting with the doc. When I said I’d come sit in the waiting room until someone would speak to me, I was told basically, that the police would be called.

So, they refused to even consider the possibility of a mistake, and treated me as a guilty criminal. I was a basket case; worried about my disability insurer dropping me plus never finding a new pain manager.

So, FWIW, that’s one of my stories of my journey that I told in my comments to the draft report of the National Pain Task Force.

Medicine has changed over the last 50 years thanks to government bureaucracy & health insurance company greed. They have pilfered the healthcare system making it their private piggybank. What used to be a wise investment in your health (an insurance premium) that provided timely service & treatment has mutated into a system that delays care, shortens time spent with providers, denies medications, tests, and treatments, etc., all for the sake of becoming a mega-money-making machine for insurers, hospitals, PBM’s, pharmacies, pharmaceutical companies, lawyers, university clinics, and so many more “participants” all “taking,” but doing less “giving.” Premiums have risen; benefits have gone down. Copays went up; coverage decreased. Time spent with providers decreased, but costs skyrocketed. Lower-level workers who provide hands-on care & spend time with patients make the least amount of money. The vast majority of income (money transference) is made by higher-level executives who do the least amount of work. They basically practice medicine without a license because they make the decisions to deny your care without knowing you or all the facts about your care. To them your premium, paid from your hard-earned dollars, is “their” money once it’s in their bank account and they will do their darnedest to keep it. That means denying as many services, medications, treatments, etc. as they can; for after all they have those pesky monthly bills to pay for their mega-mansions, private jets, yachts, sportscars, country club memberships, and more. I spend time & actually “touch” my patients; so many of them say that no one has even touched them in years. How can their providers claim to have done the physicals they claim in their chart notes? They lie (fraud) to claim higher billings to get what reimbursements they can from the insurance companies. Spend less time, bill higher rates, yet still get reduced reimbursements. Who has time to listen?

Nan

I am the mother of a son who has chronic pain. Believe me, this is not just a woman’s issue. I cannot tell you how many doctors we have seen. It is hard for me to believe what has happened in this country. To know that there is medication out there to help and be deprived of it is inhummane. What the CDC and DEA have done is criminal. Many of the doctors have just given up as a result. I know there are people trying to fight for a change but how many lives have to be ruined and lost before there is change. So much damage has been done by the media as well. It is all political and a sad situation. We are all in this together and no solutions.

First, as a conventionally trained physician, I want to say that conventional medicine is the cause of chronic disease. It’s all about the pills covering the symptoms, not getting to the problem. And since the #1 economy in the US is the sickness-care industry, don’t expect conventional medicine to change. In fact, with more restrictions/requirements/fraud charges, doctors are being forced to have their heads buried in the computer EMR instead of even looking at the patient. The doctor/patient relationship has been ruined. And when a doctor actually does what is right for the patient, he is criminalized and thrown into prison for life. So now we are getting lower-level, follow-the-numbers doctors graduating from medical school.

The solution? Get out of conventional medicine. Go to a naturopath/homeopath. If they aren’t legal in your state, get political and get them legalized. Then, through proper assessment, you can often be cured of your chronic disease.

I will be starting a podcast eventually on healing information where experts in the field will come and provide information on getting to the cause of disease. You can follow the progress and get in on the latest and greatest by connecting with me on the newsletter on http://www.doctorsofcourage.org.

Martha

Wow! Beautifully written, and sadly too true. Thank you so much for writing this article.

Heather

…my little list was questions I had to write in long-hand because I often got tongue-tied or struggled when I tried to communicate. She hurried out the door, closing it while I was mid-sentence.

I was stunned. Why was I being treated this way? I worked hard to be the “good patient” for years. I left the appointment, stood in the middle of a downtown street, and cried. I couldn’t go back to work until I could manage to look like I hadn’t just bawled my eyes out. I was devastated, utterly. That’s “doctor-assisted depression.”

It’s a real thing, and many patients have experienced it.

I had fibromyalgia, osteoarthritis which has spread into numerous joints, I had undiagnosed sleep apnea (despite having asked for a sleep study at that appointment I just described, I didn’t get one until years later).

Imagine getting a new diagnosis (fibromyalgia) after an out-of-town car accident that sent you to a new doctor, gathering your records to take to a fibromyalgia specialist, and then learning you’d already been diagnosed a few months earlier with fibromyalgia.

But nobody told you.

By the way, I’m now nearly 300 lbs. That’s the other toll this took on me over the years.

I have what I call the 3 F’s, which means most doctors have judged me before they even come into the exam room: I’m fat, I’m female and I have fibromyalgia.

I can watch an appointment go downhill as if everything is happening in slow motion — It’s like seeing a train about to wreck and not being able to stop it.

I hope the doctors who need to see this will see this. And I hope that other doctors will hold their colleagues to higher standards. Thank you to the ones who help and who listen. You are saving people from job loss, depression, possible disability, and possible suicide. Because you listened.

Gail Honadle

Excellent article. It only took 4 yrs, of ER trips and hospital stays being told by ‘Contract’ doctors who told my Gastro I had Idiopathic Colitis, and my doing the research myself to know the symptoms didn’t fit at all, which he accepted as fact. I finally got my Internist to run GI test to rule out other GI issues, AB Ultra Sound, Gall Bladder, the final test Gastric Delay for Gastropresis was a BINGO! With test results in hand back to the Gastro, all he has to offer is a Black Boxed drug called Reglan. What is it Black Boxed for…NEUROLOGICAL SIDE EFFECTS at short term use. 1st pill fortunately broke me out in Hives. Usual round of Predisone was needed. Others are not so fortunate, they take it for years and wonder why they end up on J Tubes and have Neurological Side effects. You didn’t read about it. Next came a recommendation for Domperidone from England it is NOT US FDA approved. It is Black Boxed in the UK for Heart Disease. Still want to take it especially when you are already a Cardio patient?

This one was just FDA Approved for a form of Arthritis it is Black Boxed coming on the market. Still want to take it, Why would the FDA approve a drug this dangerous it has to be Black Boxed coming out? The prescribing information for certolizumab includes a boxed warning to advise health care professionals and patients about the increased risk for serious infections leading to hospitalization or death, including tuberculosis, bacterial sepsis, invasive fungal infections and other infections. The boxed warning also advises that lymphoma and other malignancies, some fatal, have been reported in children and adolescent patients treated with tumor necrosis factor blockers, Cimzia. CERTOLIZUMAB is used to treat rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, Crohn’s disease, and plaque psoriasis. The lowest GoodRx price for the most common version of Cimzia is around $4,386.38, 13% off the average retail price of $5,082.46. Compare TNF blockers.

Heather

There’s a phrase that I now use freely. I started using it with a sense of guilt, because it felt so wrong to say, but its truth has been reinforced time and time again: “doctor-assisted depression.”

Your article hits home with me, as I’m sure it will with many. I am not trying to doctor-shame. I have great respect for the doctors who do their best and who sometimes say, “I don’t know the answer” rather than lash out at me for being a complicated patient. I searched for help and tried to be the “good patient” but I knew I had to be persistent because the alternative was going to be job loss.

In about 2002, I had lost 175lbs through diet and exercise and yet, I found myself struggling. I came home from work, collapsed into bed and slept until I had to get up for work the next morning. Day after day. And, my body hurt, a lot, all over! I told the doctor, who said it was depression. This was discouraging, because I knew it was more than that… and I was struggling to maintain the weight loss that I had from exercise and the DASH diet (for hypertension).

I saw other doctors, who either labeled me with depression or just acted like I hadn’t just said something about how my life had dramatically changed… and who nodded and sent me on my way until the next appointment. By my count, it was 5 doctors I saw about the same complaints… from 2002 to 2007. In 5 years, my work situation was desperate and I was having cognitive issues, including memory problems.

Doctor #4 was a rheumatologist who told me to take Naproxen sodium and exercise. He sent a letter to doctor #5, my primary care doctor at the time, telling her I had fibromyalgia. He didn’t tell me, she didn’t tell me. I found the letter in my records later on.

Doctor #5, the primary care doctor, acted hostile with me. She thrust an anti-depressant script and said I’m just tired because I’m depressed. I protested. She mockingly asked me if I was “done with (my) little list”… (cont’d)

Walter Strickland

Thank you Liz. I do believe you hit the nail on the head ! I couldn’t have describe our positions as chronic pain suffers any better than you just did.m hoping and praying someone will listen to us.We have conditions that are very real. And without proper treatment and proper medications we suffer undescribable pain and suffering that is non stop and is ever day of the year.Is a shame we have to beg to be heard And beg for proper treatment.Thanks for your support and keep up the fight as that is what this is , a fight for our right for proper treatment proper medications fight to live a normal life !!!

Terri James

Yes Liza, I suffered horribly with endometriosis until I was 40 years old. My new gynecologist said I must have surgery. Come to find out if I hadn’t I would have died, it was that bad. Arthritis had already set in years before. I’d been to so many specialist it was ridiculous. The last one literally said, “No pain no gain!” I’ll never forget him, he looked like Greg Brady, from The Brady Bunch. It was raining hard that afternoon. I was crying so hard I seriously wondered if I would make it home, it was all I could do to see to drive. I felt like all hope was lost. Of course my debilitating pain continued to drive me to seek help. I had a physician that could have cared less about me. She rolled her eyes when she saw me coming. I came up with a new idea and that was to ask every single person I knew to pray, and for them to ask every single person they knew to pray. Before I knew it I had churches and more people than I could have imagined praying for miracles. That’s what I’d ask people to pray for. God knew what was wrong, I felt no one else needed to. A few months passed and lo and behold my doctor moved to another town. I learned I could stay with the group I was in and choose another physician. I finally found that elusive creature that you speak of, a meek and mild man with a genuine heart! A real person, you know what you see is what you get. Years later come to find out, I’ve had different specialist tell me he’s also one of the smartest men they’ve ever known. All I know is I’m so very thankful to have met him and still have him as my physician today. I love people of all kinds, but I absolutely hated doctors until I met him. God answered my prayers! It breaks my heart that folks are losing their doctors and medicine. That we live in such a country where the very committees that hold our lives in their hands are laughing at us. That our country has turned its back on us. May God bless you Liza for your wonderful work! I will continue to pray.

Thomas Wayne Kidd

I appreciate your writing Liza! And you have nailed it. I to have been misdiagnosed and mistreated over the past 30+ years. One thing that struck me was the experiments on the male animals in preference to the female. Animal is the key word! Our education system has began to, I fear, think of the human race as just another animal. Human dignity is not taught as I once was. Many think and actually believe that we are but a little higher form of the animal kingdom. An observation of our society here in the 21 st. century will bear this out. I am soon to be 67 years old and have seen these concepts grow over the years. The Creator has for the most part become a precept of an antiquated myth to most people in all fields of the education system. Western societies for the past century have made a concerted effort to rid themselves of any and all ideas Christian. Modern civilization is a product of Christian ideas and moral principles, but this is blatantly denied. I fear that this will only grow worse. Actually love, compassion and care for one another is becoming, do for one’s self and forget about our neighbors. Jesus Christ is a joke to millions both educated and uneducated. Animals are preferred to our own kind. I understand why after all these years we are dismissed as mental illness and criminals. Actual love and compassion for one another is the key ingredient for any society to function properly. One inhuman teaching is at the core of the mistreatment of the sick and dying, evolution and it’s total disregard for human dignity. Many people disagree on what I say, but I have observed this for the whole of my life. Many people are offended by my concern and love for others because of what is taught in our schools of higher (?) learning! In conclusion want to tell you and all who read this that I actually love and care about you. God bless you my fellow chronic pain sufferers.

Judie Plumley

Oh Lisa,
You said it! The thing about women’s health came to me in 2012when I found out about the transvaginal mesh they put in my body 8 years before. I had never idea they had only been implanted into sheep before the went on the market.
I was in agony, and the doctors said it was me, or they didn’t believe me. I was paying them and they were scoffing at my pain. One went so far as to say if I could stand a pelvic, there was no reason I couldn’t have sex too!
First, I hated doctors, then it turned into fear. Then it was panic. Those are the same emotions I had when I was an abused wife. I don’t know what was worse, my pain or my terror. I had no choice about the pain, really. My COBRA ran out and it was a year before I got disability, so I had no insurance. I couldn’t go to a pain clinic even if I had wanted to. I tried a couple of times. I simply could not bring myself to pay someone to abuse me like they do. So I tapered, I use kratom and CBD, NSAIDS and kava, and like all of us in this community, I struggle with pain every day and it’s getting worse.
But until this horror, this torturing the disabled and sick to the point of suicide by the government is over, I will have to rely on myself and those who love me.
Thank you for bringing this up!

Alan thurman

What is missing from the stories I read, are the side effects and long term problems associated with people not having access to proper pain medication. For example: the lady who started discussions spent six years trying to find a pain doctor, so she also spent six years without seeing a doctor. With all the moving parts s woman has, its potential that other systems will have issues, thus when she finds a doctors who helps her relieve her misery, she now has other issues, that should have been taken care of in its infancy. The cost to the taxpayers and insurance companies will be astronomical. I know 8 people who have been shut off of their pain meds, 8 out of 8 had decent jobs. Now 8 out of 8 are jobless. Everyone is on welfare, for no other reason than their pain medication was taken away. Blue collar jobs often require repetition of a certain motion. After twenty years of that your body breaks down, pain killers allow people to work and have a life when they get home. When you take that option off the table their kids suffer, their parents and family members suffer. For tge love of god e d thus nonsense, stop pigeon holing the doctors. A free country means tge right to choose your medical options, it’s that simple! I don’t like having to beg for medication and won’t!

Elizabeth J Kamego

Unfortunately, seeing many doctors and trying to get help will often get a person labeled as “doctor shopping.” My primary goal is to get the government beaureacrats out of the decisions that create the need for them to paint us all with one sweep of a wide brush because of a heroin/fentanyl crisis…and not an “opioid” one. So, for now we suffer, are forced to taper or endure painful temporary injections that do more harm than good. While the government is focused on “saving” drug addicts; we are forgotten. Thank you for your advocacy. Chronic pain sufferers need to continue to stand and fight for a slight chance at just making it through the day.

Claws

Not using test animals of both genders is moronic, yes, BUT the healthcare system, as a whole, fundamentally mistreats males and females equally is my experience. If you don’t fall within a very narrow swath of normalcy you may die with an undiagnosed genetic issue. I’m 65, had a perfectly good gallbladder removed a few years ago that caused me much grief (the removal, OR mistakes et. al.) and recently it was discovered that I have an issue that’s estimated that 1/10 of the population has, pancreatic divisum. It’s a congenital issue and I’ve had gut problems my entire life yet no doctor ever suspected or checked for this issue. I’ve heard “We don’t know why this happens” IDK how many times regarding a number of issues. Perhaps if they’d look they’d see.