When Patients Lie: How to Spot Deception, What You Can Do, and Why it Matters

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malingering-prevHow do you know when a patient is lying about his symptoms, condition and history? The short answer is “you don’t.” But, as this case study will demonstrate, you need to use all your senses, especially your powers of observation.

Accusing anyone of lying is serious business, but when that person is your patient, the stakes are even higher. But what do you do when a patient really is telling a lie?


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How do you know when a patient is lying about his symptoms, condition and history? The short answer is “you don’t.” But, as this case study will demonstrate, you need to use all your senses, especially your powers of observation.

My patient, a 33-year-old African American male, was brought from the front seat of a Greyhound bus by ambulance to the community emergency room where I was moonlighting near the end of my third year of residency.


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He reported that he had a known diagnosis of an ascending aortic dissection and was traveling from his home in Miami, Florida to see a vascular surgeon in Seattle, Washington. Aortic dissection is not a common diagnosis, occurring with an incidence of 3.5 per 100,000 per year [7]. It is frequently life-threatening, and an acute presentation requires emergent and often surgical intervention. He reported that, while on the bus, he developed chest pain, feeling both like an elephant sitting on his chest, as well as a more severe, tearing pain radiating into his back that felt like his aortic dissection. He had a past medical history of Ehlers-Danlos syndrome and chronic myelogenous leukemia, currently in remission, as well as multiple previous pneumothoraces and thromboses, both deep venous and pulmonary.

He stated he had previously had an operation performed in Munich, Germany where his dissection had been “clipped,” but not permanently repaired, and also reported placement of an inferior vena cava filter. He claimed to have anaphylactic allergies to CT contrast, propofol, sulfa drugs, ketamine, and droperidol. He had poor peripheral veins and requested almost immediately that a central line be placed. He carried with him a well-worn copy of a transesophageal echocardiogram (TEE) report showing a possible intimal flap near his aortic valve. Initial vital signs showed a BP of 117/72 and HR of 110.

Physical exam revealed a thin, pale male with a medial sternotomy scar, a port scar in his upper right chest, and several scars on his lateral chest consistent with previous chest tubes.

Prior to medical school, I lived in Germany while serving in the military, so I conversationally asked him why he was there (attempting to build rapport but also curious about the consistency of his responses). He told me that he had been an ROTC student at Stuttgart and periodically driven to Munich. I commented this was a long drive, and he reported it had taken him 12 hours each time (this is a two and one half hour drive). I asked him whether he spoke German and he said that he did, but was not able to answer simple questions in German. Something did not smell right. What stood out to me was how mechanically he described his complaint and history, offering a textbook description of both angina and aortic dissection. He rattled off his list of allergies as though he’d said it a hundred times. Few patients are that fluent with their medical history.


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In addition, the description of his previous surgical intervention was quite circumspect — that a surgeon would intervene with an open-chested surgery without performing the definitive operation for his diagnosis would be a considerable deviation from the standard of care. But with his complicated past and the scars to prove it, I gave him the benefit of the doubt.

My desire to do the right thing and care for the patient carried me forward. I was able to place an ultrasound-guided peripheral line and thereby negate his request for a central line. We administered a dose of IV esmolol and fentanyl upon his request. CT angiography is the test of choice for evaluation of aortic dissection and in the setting of a contrast allergy we will often pretreat with steroids and antihistamines.

He utterly refused this. I offered an MR angiogram of his aorta. He replied that the metal in his chest prevented him from having an MRI. As a former MRI tech well versed in contraindications, I assured him that having an MRI would pose no risk; but he continued to refuse, saying that his previous doctors had told him he could not have one. He requested instead that we obtain a TEE, which would require sedation which, due to his allergies, would have to be performed at least in part with narcotics.

At this point I had the opportunity to review our records, which were connected by our electronic medical record (EMR) with several associated hospitals. I discovered that he had presented to one such hospital in another state in 2011 with an identical complaint with the exception that he had been traveling from California to Kansas for his repair at that time. He had been admitted to that hospital and after an extensive workup they found no evidence of dissection. In fact, they noted that the week prior to his presentation there, he had been seen in more than ten different hospitals in the Las Vegas area.

Turning to my technological sense, I performed a brief Internet search, which revealed several case reports of a patient that sounded identical to this patient —with the same age and history of having an exploratory sternotomy performed to evaluate this complaint. Case reports revealed he had been seen at numerous hospitals across the country from New York to California dating back to at least 2003 [8-13]. I approached the patient with this newfound information with a renewed sense of fair play and invited him to confess to his confabulations. He insisted his pain was real. In collaboration with the on-call cardiothoracic surgeon, we agreed that given his baseline low-likelihood, a CT scan without contrast would be sufficient to rule out significant aortic pathology. This was performed and was, predictably, negative for aortic dissection. It did show a venacaval filter and some small surgical clips in his anterior mediastinum, presumably from his exploratory surgery. I again confronted the patient, this time with a rational sense — with concrete data. At this point he requested to leave and I discharged him.

So, what was really going on here?

Malingering

Malingering is characterized by an intentional deception, including both invention and exaggeration, concerning a physical or psychgological condition with the goal of obtaining some external reward, e.g., not having to work, food or shelter, avoiding arrest, etc [14].

One study suggests that the rate of malingering in the emergency department may be as high as 13%, with the belief that in recent years, this has only increased [15,16].

Another study found that among patients with chronic pain, the rate of malingering was between 20 and 50% [17]. By federal law, patients must be screened for an emergency medical condition, so regardless of the so called “red flags,” some sort of an evaluation must be completed. Regardless, malingering must always be a diagnosis of exclusion, and the excluding process costs time and resources.

Munchausen or factitious disorder

Munchausen syndrome, also known as factitious disorder imposed on self (as classified by DSM V), involves more dramatic and convincing presentations by often well-informed patients without an obvious secondary gain. The goal of patients with factitious disorder is often simply to be the center of attention: to be actively cared-for, to play the role of sick patient. They accomplish this by employing deception to exaggerate, fabricate, simulate, or induce their symtpoms [14]. They are often well-informed about their feigned conditions, understandably so as they have typically had numerous diagnostic evaluation and therapeutic interventions for them, and have been so convincing that they often carry scars as a result of these investigations [18].

These patients will often take medications such as insulin or immunosuppressants, or introduce extraneous blood to emesis or urine samples in order to alter laboratory testing and prolong the ruse. They are often confrontational and almost invariably leave against medical advice after health care workers become less compliant to their requests for pain medicine, intervention, or treatment in the face of largely negative evaluations.

Emergency departments are particularly susceptible to these patients as the disorders they mimic often require immediate intervention. An emergency physician must always consider factitious disorder to be a diagnosis of exclusion, so even when one suspects that something is irregular, he or she must nevertheless continue the evaluation and treatment until such devastating diagnoses are excluded. Munchausen by proxy, or factitious disorder imposed on another, involves creation or confabulation of disease in another person, usually a child, with the goal of assuming a central role as the patient’s caregiver.

For a listing of diagnostic criteria for factitious disorders, see figure 1:

factitious-disorder-main

Somatization or Somatic Symptom Disorder

Somatization disorder is the presence of physical symptoms that, after complete diagnostic evaluation, have not been found to have a physical or organic cause. DSM V has abandoned this diagnosis with the following statement: “It is not appropriate to give an individual a mental disorder diagnosis solely because a medical cause cannot be demonstrated.” They have replaced it with the more specific diagnosis of somatic symptom disorder. Unlike its predecessor, this new diagnosis includes patients whose symptoms can be explained medically as well as those whose cannot.

Patients’ reaction to symptoms is excessive and disproportionate, with high levels of anxiety and excessive energy spent on addressing these symptoms. The most common complaints include pain, gastrointestinal complaints, cardiovascular complaints such as palpitations or shortness of breath, or neurologic complaints such as dizziness, weakness, or paresthesias [19,20]. Somatization disorder has previously been associated with risk factors such as mental illness, sexual abuse, low socio-economic status, minority status, and female sex [19,21].

These patients are often ED recidivists and frequent various specialists who have not been able to give them a diagnosis or present them with a satisfactory treatment plan. The best approach is to have such patients establish care with one primary physician who can track their symptoms over time and monitor for changes that might herald organic disease, while avoiding the problem of multiple providers initiating multiple interventions – which might cause iatrogenic disease. Compliance with this approach has been problematic as this population favors the convenience of emergency departments and often does not make or keep appointments [19].

Factitious disorders, malingering, and somatization or somatic symptom disorder are a problem for the emergency department. These patients are often skilled in deception and well informed about current medical practices and the hesitancy providers may feel to distrust a potentially serious presentation. The [appropriate] concern in medicine – not to miss a serious diagnosis – has allowed patients like the one highlighted above to abuse the healthcare system for years. While few are likely as adept as he, the standard practice of giving the benefit of the doubt allows an impossibly unknown number of others to similarly take advantage of the system in smaller ways.

There have been numerous methods proposed in the past to detect the less veracious patient. These methods are both poorly defined and poorly sensitive.

It should be noted, one study found that several of these behaviors – including lost or stolen prescriptions, pain greater than 10 out of 10, or requesting of a specific route – were present in only a minority of patients who were eventually referred for chemical dependency [24]. Electronic communication systems and databases, including the electronic health record (EHR), are advancements that should improve our ability to detect and avoid redundant management of such patients. These may take many forms including health information exchange between participating hospitals and healthcare facilities (such as the system used to find records about this patient), and state prescription drug monitoring systems. Evidence gleaned from review of such systems can provide a justification to avoid costly and invasive testing.

Various techniques have been employed by ED physicians including direct confrontation and request for identification — as some patients give falsified names or birthdays. These techniques often result in the patient opting to leave the ED without further assessment or treatment. Circulation of aliases and descriptions are problematic due to patient privacy issues, but as many of the more complex perpetrators tend to have well-studied and consistent histories, disseminated information and awareness of these patients without specific data constituting protected health information may be sufficient to raise the level of suspicion for a particular complaint or implausible presentation.

In the psychiatric literature, there are numerous studies designed to define criteria to identify prevaricators. These require complex neurocognitive testing such as the Minnesota Multiphasic Personality Inventory, the Symptom Validity Test, and the Fake Bad Scale that are not reasonable options in the ED, particularly for complaints with potentially devastating outcomes such as dissection [25,26]. One author presents a five-criteria system with a relatively low sensitivity and high specificity that, due to the requirement for neurocognitive testing, is only partially applicable for the ED. His criteria include:

• Presence of external incentive

• Physical findings, defined as perception of poor effort, non-organic cluster of symptoms, discrepancies in story, and changed behavior based upon whether the patient believes he or she is being observed or not

• Compelling inconsistency, e.g. some- one who says he cannot walk and then does

• Lack of other diagnosis that fits the symptoms better [25]

Those who have experience working in an emergency room develop a sense for the gestalt of a drug-seeking patient, an unconscious recognition that may or may not be dependent upon some of the above described criteria. One study comparing the ED provider’s impression to a state prescription drug monitoring program found that such a gestalt had a sensitivity of 63.2% and a specificity of 72.7% for identifying drug-seeking behavior [27]. This suggests that ED physicians likely have a good sense of who is and is not present in the ED for secondary gain. This intuition or awareness of subtle irregularities should cue the practitioner into looking for some of the other more classic characteristics of nefarious intent. This appears to be the most accurate method of detection yet identified barring logistically prohibitive testing.

Those who choose to abuse healthcare resources for their own secondary gain harm not only themselves, but those from whom the resources of time, tests, and therapies are being diverted. To simply acquiesce because it is easier – and it always is – is an impediment to good patient care. Indulging such patients, thinking that our actions have little consequence on the broader picture in the life of either the individual or the healthcare environment at large – adds to the problem. The available studies on rates suggest that EDs are already taxed by demands of increasing patient volume and corporate compliance. Through the use of electronic resources and increasing awareness, we may avoid unnecessary and wasteful care and deliver better service to those who legitimately require it.

 

REFERENCES

1. Leap, Edwin. Second opinion: cynicism well earned, judiciously applied. Emergency Medicine News 2014; 36(3):5.

2. Resnik DB, Rehm M, Minard RB. The undertreatment of pain: scientific, clinical, cultural, and philosophical factors. Med Health Care Philos 2001; 4(3)277-88.

3. Manchikanti L, Helm S, Fellows B, Janata JW, Pampati V, Grider JS, Boswell MV. Opioid epidemic in the United States. Pain Physician 2012; 15(3 Suppl):ES9-38.

4. Nguyen V, Nelson LS, Lenz K, Ung L. Part of the solution? Or part of the problem? Comments on clinician impression versus prescription drug monitoring program criteria in the assessment of drug-seeking behavior in the emergency department. Ann Emerg Med 2014; 63(4):500-1.

5. Hupp JR. Patients using dental pain to obtain narcotics from emergency physicians—a dental perspective. Am J Emerg Med 2014; 32(2014):466-85.

6. Whiteside LK, Walton MA, Bohnert ASB, Blow FC, Bonar EE, Ehrlich P, Cunningham RM. Nonmedical prescription opioid and sedative use among adolescents in the emergency department. Pediatrics 2013; 132(5):825-32.

7. Clouse WD, Hallett JW, Schaff HV, Spittell PC, Rowland CM, Ilstrup DM, Melton LJ. Acute aortic dissection: population-based incidence compared with degenerative aortic aneurysm rupture. Mayo Clin Proc 2004; 79(2):176.

8. Gaudina M, Nasso G, Romano V, Pragliola C, Di Cesare A, Speziale G, Massetti M. Acute aortic pathology, Munchausen syndrome, and confirmation bias. J Emerg Med 2013; 45(6):e183-6.

9. Firstenberg MS, Sirak JH, Sun B, Kasick DP. Factitious disorders and cardiothoracic surgery: the ongoing multidisciplinary challenges of a complex case. Case Rep in Med 2009; 2009 ID 103265:1-3.

10. Hopkins RA, Harrington CJ, Poppas A. Munchausen syndrome simulating acute aortic dissection. Ann Thorac Surg 2006; 81:1497-9.

11. Fedoruk LM, Kern JA. Munchausen syndrome and acute aortic dissection: letter 1. Ann Thorac Surg 2006; 82:1948-54.

12. Estrera AL, Safi HJ. Munchausen syndrome and acute aortic dissection: letter 2. Ann Thorac Surg 2006; 82:1948-54.

13. Hopkins RA, Harrington CJ, Poppas A. Munchausen syndrome and acute aortic dissection: reply. Ann Thorac Surg 2006; 82:1948-54.

14. American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Arlington, VA. American Psychiatric Association, 2013. 309,311,324-6 p.

15. Yates BD, Nordquist CR, Schultz-Ross RA. Feigned psychiatric symptoms in the emergency room. Psychiatr Serv 1996; 47(9):998-1000.

16. Brady MC, Scher LM, Newman W. “I just saw Big Bird. He was 100 feet tall!” Malingering in the emergency room. Curr Psychiatr 2013; 12(10):33-8,40.

17. Greve KW, Ord JS, Bianchini KJ, Curtis KL. Prevalence of malingering in patients with chronic pain referred for psychologic evaluation in a medico-legal context. Arch Phys Med Rehabil 2009 90:1117-26.

18. Asher R. Munchausen’s syndrome. Lancet 1951; 257(6650):339-41.

19. Stephenson DT, Price JR. Medically unexplained physical symptoms in emergency medicine. Emerg med J 2006; 23:595-600.

20. Kroenke K, Rosmalen JG. Symptoms, syndromes, and the value of psychiatric diagnostics in patients who have functional somatic disorders. Med Clin North Am 2006; 90(4):603.

21. Creed F, Barsky A. A systematic review of the epidemiology of somatisation disorder and hypochondriasis. J Psychosom Res 2004; 56(4):391.

22. McCaffey M, Grimm MA, Pasero C, Ferrell B, Uman GC. On the meaning of “drug seeking.” Pain Manag Nurs 2005; 6(4):122-36.

23. Weiner SG, et al. As the prescribing practices of emergency providers come under enhanced scrutiny, watch for red flags of drug-seeking behavior. ED Manag 2014; 26(1): 5-8.

24. Grover CA, Elder JW, Close RJH, Curry SM. How frequently are “classic” drug-seeking behaviors used by drug-seeking patients in the emergency department? Western J Emerg Med. 2012; 13(5):416-21.

25. Bianchini KJ, Greve KW, Glynn G. On the diagnosis of malingered pain-related disability from cognitive malingering research. Spine J 2005; 5(4):404-17.

26. Berry DTR, Baer RA, Harris MJ. Detection of malingering on the MMPI: a meta- analysis. Clin Psychol Rev 1991; 11(5):585-98.

27. Weiner SG, Griggs CA, Mitchell PM, Langlois BK, Friedman FD, Moore RL, Lin SC, Nelson KP, Feldman JA. Clinician impression versus prescription drug monitoring program criteria in the assessment if drug-seeking behavior in the emergency department. Ann Emerg Med 2013; 62(4):281-9.

26 Comments

  1. while I understand the concern of dealing with patients with this mental condition, I must say that I have been the victim of the other side of the coin. The side where doctors don’t believe me to the point of neglecting to properly read my medical chart.

    I have several serious health conditions, but I am young and since they are all internal, often don’t show on the outside.

    I have ulcerative colitis, endometriosis, spodyloarthritis, and recurrent corneal abrasions (the latter two of which are associated with my ulcerative colitis). I am also still recovering from injuries from a car accident I probably should not have lived through.

    I am allergic to sulfa drugs I do in fact have anaphylaxis in response to these drugs I have anaphylactic reactions to a few things which is why as I write this I have an epi pen and a bottle of Benadryl on my nightstand.

    When I first was put on sulfa drugs for my ulcerative colitis, I went back in shortly after tell the doctor I think I am allergic to this medicine as my tongue was feeling funny and poofy. The doctor said that the benefits out way the negative and sent me home. Not to long after that I was in the ER surrounded by a frantic team. By the time they had me stable, my face had became so swollen that I had to be on pain meds because my face hurt so bad. I almost died, was in a lot of pain, and stuck in the hospital for 2 days because a doctor didn’t take me seriously.

    I also have endometriosis, which can often times be confused with the pain of colitis, at least in my case. I may go in there thinking I have one thing, and have the other, and I have been accused of faking my illness. One time a doctor came in while I was the ER for a flare up (which my blood work supported, I waiting for imaging to cone back, and I was in fact having a flare up) and was almost yelling at me saying I was faking my disease, and there is no proof I had it. I was very confused, as I have had a biopsy done, am on medication for it, and have suffered through multiple hospitalizations. Not too long after the supervising physician came in and apologized for that doctor’s behavior and said he knew how horrible my disease was. He was very apologetic, however it was still really horrible of the first doctor to have done what she did. Especially since if she had just looked at my chart she could have seen that I have in fact had a positive biopsy, and that I am in fact on medications for this condition. To be in that much pain and then be accused of being a liar is an awful thing to go through. I think that the doctor who accessed me has no business being a doctor.

    Being so assumption can risk lives. Recently I went to the ER for a bad flare up. The triage nurse obviously did not take me seriously, as everybody went ahead of me even though I knew that something was quite wrong. I was severely dehydrated, in severe pain, and with severe nausea. I was out in the waiting room for over two hours. I ended up passing out in my chair, at which point I guess they were a worried. They came over to check on me and though I was able to get up, a few steps in I passed out right there in the middle of the ER. They put me on heart monitors and kept me there for quite a few hours to rehydrate me, and keep an eye on my heart. I had an elevated white blood cell count coupled with severe pain in my abdominal area, nausea, and severe dehydration. I was too out of it to be of much use as I was in and out of consciousness and a lot of pain. They hydrated me with some bags of fluid and sent me home with some nausea medicine, They never took an abdominal scan even with the high white blood cell count. They didn’t check my files properly. The next day I was back in except this time in much worse shape, and I had to be hospitalized for several days. All because a doctor didn’t properly check my files. He also acted like I was drug seeking, as I did ask for some pain medication, as I was in extreme pain since my internal organs were swollen!

    I would like address your red flag list.

    Lengthy allergy lists that may or may not include narcotics: I do have a lengthy allergy list. Anaphylaxis to sulfa drugs, penicillin shuts down my kidneys (can’t remember the name of the reaction at the moment, but I spent several days in the hospital as a result). I also have a reaction to morphine but not any of the other IV pain meds I have been on. I did not determine this reaction, doctors did one of the times I was hospitalized.

    I am also very familiar with my allergy and medication list as I have 5 specialists I work with along with my primary care physician. Every time I go to any of those doctors I have to list and review all my allergies and medications. So I basically do this at least 3-4 times a month. Not to mention going to the pharmacy one a month as well. So I suppose it could seem like I memorized something, but it is only because I have to go over it so often.

    I have also had times where my pain is a 10 out of 10. I have went into shock before from pain before the ambulance got to me. I would say if you’re in so much pain you go into shock then perhaps that qualifies as a 10 out of 10. I frequently have suffered from 8 out of 10 pain.

    Another red flag you list is being too familiar with your condition. If you gave a chronic and/or life threatening condition, how could you not be very familiar with your condition? I am very familiar with my conditions. It seems it would be irresponsible not to know about your conditions. And after enough hospitalizations and tests, you do start to get the lingo, and have an idea about what is going on.

    Another red flag you mentioned was asking for specific meds. I have taken enough anti-nausea meds to know that Zofran doesn’t work very well for me, while phenergan does. I also know vicodin makes me throw up within 15 min of taking it. Also, nsaids cause my ulcerative colitis to flare up. This doesn’t mean I am making up my condition.

    • I totally understand. My allergy list does include some narcotics, so once they hear that they usually start taking me seriously….and give me narcotics anyway because “we have to treat the pain somehow, too.” Ughhh

    • Are you saying she needs a psychiatrist because of all she’s going through? I really didn’t understand your meaning.

    • To Mary, I hope you learn how to speak without being so offensive. A mere therapist will do, but a full blown psych… hmm. I hope you can gain some empathy.
      To Jim Leyland, most likely not the Baseball Coach..
      Medical school is so intense anyone suffering through any ailment such as elhers danlos, would never make it. So we have super healthy, mostly wealthy, unempathetic healthcare professsionals that think its all in our heads.
      As for the typing, Elhers Danlos arthritis makes it incredibly difficult to type. Why would you, sir, deserve our best presentation of communication when you are a troll. The above article is malarkey and is used by healthcare professionals to verbally abuse patients. I would like to see an “empathy in healthcare” mandate training for all ER doctors and RNs.. yes they must weed through alot of fakes, but no it does not give them permission to treat patients poorly, even the fakers.

  2. I was recently seen at the ER, and told my ailment was ‘no big deal, but if you want a referral to orthopedics, we’ll give you one’.

    Instead, I made an appointment with my regular doctor’s office, but was unable to see my regular doctor. The doctor told me my problem was ‘no big deal, but if I want a referral to a specialist….’.

    I received several calls from a number I knew to be the doctors office, which I ignored, because I have nothing that is ‘a big deal’.

    I’ve chosen to wait until my next regular appointment. I am being followed for Ehlers-Danlos Syndrome, a genetic condition that involves all kinds of weird, intermittent, painful seemingly unrelated symptoms that caused me not to be believed for 25 years, and now I pay for this disbelief every day.

    A couple of days ago I received a letter from that doctors office informing me that they’d tried to call me, but couldn’t get me and suggesting that it’s important that I call to set up an appointment with the recommended specialist.

    So which is it, it isn’t important? It suddenly got important? The specialist needs money?

  3. I have Ehlers Danlos Syndrome and Chiari Malformation, my daughter also has EDS, both of us have the hypermobile type but have a lot of symptoms from other types, it took me years to get a diagnosis for EDS and even with that doctors still don’t take either of us seriously. I was sure I had Chiari Malfromation too which was diagnosed finally about 3 and a half years ago. I had an MRI to check for this and spent months trying to get the results and then when they finally came back to my doctors I was told that there was nothing wrong, then a few months later at an appointment at my GP again because of the symptoms of Chiari Malformation and seen a locum doctor who was reading through my notes and happened to mention my diagnosis for Chiari Malformation as she was reading out loud through my notes which was how I finally found out I did have Chiari Malformation, had to practically beg to be sent to see a neurosurgeon which I had found and was the only one in the whole of Scotland who operates on people with Chiari Malformation. I also contacted her directly myself and it was my letter that finally got me an appointment to see her and she was brilliant, showed me my scan and the malformation and despite having EDS she offered me the operation and was very honest with me about the operation and that it might not work and could even leave me worse off but she understood that if it reduced the head pains Id had since I was a teenager then that would at least give me some relief and some better quality of health. During the time I was waiting for my operation one time I had contacted my GP because of pain and he had the cheek to suggest that I would benefit from psychological counselling.

    I finally had my decompression surgery for Chiari Malfromation and it did help a lot for a while but that is/was better than nothing and I am still alive which I doubt I would still be if I hadn’t had the operation.

    Even now after brain surgery and formal diagnosis of EDS and CM I still don’t get taken seriously and neither does my daughter. She has been having a lot of problems with chest pains and breathing problems on and off for almost two years now which are probably down to gastroesophageal reflux disease which is probably caused by the top of her stomach muscle not closing properly which makes sense when it comes to EDS. I am sick of ignorance by medical staff, these illnesses have killed dozens of people in the last couple of years alone and those are just the ones that I know of!

    The problem with doctors is they assume that because a patient knows more about their medical problems than they do they automatically label them hypochondriacs and this it seems is more down to them having their egos dented. A good doctor is a doctor who listens to their patient and takes them seriously and does not jump to conclusions just because the patient knows anything about their medical condition, just because a doctor doesn’t know anything about an illness does not mean that it doesn’t exist it just means that they are not educated enough!! Look online, check the news for how many people have EDS, CM, gastroparesis and lots of other linked genetic conditions and you will see many many people who have these and how much it affects their lives but of course we are all just having a mass hallucination!, right!!??

  4. Christina Rightmer on

    I have to agree with many that for us that look ok on the outside we are not always taken seriously. i try to avoid ers as much as i can. i have ehlers danlos syndrome too and it was years before i had a diagnosis and my son evaluated and then twins i gave up for adoption both with eds as well. Since i worked in the medical field for years and had odd gi issues still no one can define and issues with absorbtion of nutrients and no matter taking supplements in correct doses orally my levels were still very low and once corrected intraveneously were finally in normal range and when i missed several infusions due to another illness levels went back low again. no one knows why can absorb macro but not micro nutrients and i currently have scurvy for the second time in my life and the only way my c levels raise is by iv high dose vitamin c with b vitamins and others to keep things in range. i am in a new state and if records were read they would see this pattern especially when i said labs back years here and here and imaging here and here and this is what diagnosed with this with several things linked to my connective tissue disorder and because i read and do research and know what is more common in my disorder i had a doc once once say u must be looking for and gathering rare diagnosises and i said no because with the eds we are more prone to things that are less common than general population and shoved a good comprehensive peer reviewed paper in thier face and said read it read my medical records see these blood work results and see this from retina specialist ect. and i said i also the crap shoot too that stuf happens in one that presents in ways that are n9ot the norm and i also try to find out whom in area or state i live in that more knowloedgable in things than not and go from there. i am one to educate and work with a doctor that may not know much on things. and my stomach still has its strange ways that i listen to gi system eat what can go from there. and the strange thing since be4ing in a new state and not looking for new diagnosis but the pcp sending me to a couple specialists im diagnosed with few more rare things so hmm what is there to do and go from there. maybe will be believed now and yes i have taken my health back into my hands and have made a couple of appointments did not need a referral from my pcp and sought out to find a medical team i may need that i am comfortable with go from there. not one3 area will be able care for all but i keep my doctors whom i have seen and go from there, i found a good gi doc i have asked after he did some tests if i could stay in his care if other issues arise because he knows me and im comfortable with him i hate being passed by the buck and its crazy at the one teaching hospital in area and thus i have to look for others to want to know and go from there. so those of us diagnosed with something rare or multple issues and supplying peer reviewed info to doctors esp a good paper on type i have and being able to spew medical history to and fro because i have to with multiple allergies ect. i do what i can go from there i try to keep things conservative if i can and i weigh risk vs benefit and go from there but one my priorities is to get my c levels back to normal range go from there

  5. Just fascinating, I took care of this patient in 2012. He was diagnosed of leukemia in my hospital at that time. I was covering the CT team. The interesting thing is that even if that was the first time at our ER, nobody believed him. Well, I guess I did. After workup was negative, pain medication and the leukemia was discovered, chest pain went away. He was admitted to medicine.
    I feel sorry for the people from previous posts. Drs should believe in patients and vice versa. Unfortunately this crazy world make us doubt and some choose to do the opposite on both sides.

    • Melissa Stoll on

      I fell down a flight of stairs Feb 22 2015. I had a perforated ear drum right off the bat. I was speaking slowly and not well. I kept complaining of a headache and the ER dr kept telling my husband I was fine and finally said I think your wife is pain seeking. Since I had refused to leave cause my head hurt (I don’t remember this or for 8 days I have NO MEMORY) My hubby begged for a CT scan for 10 hours. He told them over and over I was not pain seeking. The ER dr finally agreed, and within minutes they were in a rush to transfer me to another hospital by ambulance and they told him I had bleeding on the brain and two skull fractures. I spent 2 months in the hospital because of it. I also have Ehlers Danlos like the people above me^^^, but drs don’t know enough about it so we are accused of so much we shouldn’t be. Its heart breaking. That doctor would have killed me if he had his way of discharging me. My kids would have been left without a mum and my husband would have been a widow at 34. Drs should go back to the oath of do no harm

      • How is it that ANY doctor/Hospital OR INSURANCE for that matter would allow you to be in the HOSPITAL for 2 months due to bleeding on the brain and skull fractures.
        While you might have had skull fractures and bleeding on the brain, this happens to be the 21st century….and it is highly SUSPECT and Unlikely you would be kept for two months….period.
        ( BTW….I actually know what I am talking about as far as bleeding on the brain and skull fractures….and I wasn’t kept for 2 months….Sorry, you are full of sh*t

  6. Amazing how all these EDS sufferers come out of the woodwork and post within hours and days on this 2 year old article. Now I’m not saying y’all are lying on the internets, but it is fishy and all you guys seem to have a similar way in typing without proper punctuation and paragraphs.

    EDS is taught in medical school and it appears on the USMLE, so it’s not some mysterious disease that no doctors have ever heard of.

    Most doctors will try their best to help you, but Munchausen’s and factitious disorders are also real and like any other psychiatric condition, it’s sufferers don’t have awareness about it.

    • There is a small section on connective tissue disorders taught in medical school. Ehlers-Danlos Syndrome is multi-fauceted with many subtypes as well as many co-morbid conditions. Very few doctors actually know what EDS is or how to treat it, especially ER doctors!! Any one with a rare or uncommon diagnosis is going to know a lot about it because it is essential to them getting any kind of treatment. Ohhh the stories I could tell you about pompous, under-educated ER doctors that made near fatal mistakes because they did not listen.

    • This is making its rounds on our Facebook groups, that’s why we are commenting on it.

      It is disgusting the kind of constant discrimination we face, and yet even our outrage about it is suspect? Okay. I just really hope you never have to deal with what we deal with, especially in the face of your obvious suspicion. (America, the land of the free — free for straight white healthy men to do whatever they want, fuck everyone else. If you are only one or two of those things and have ever experienced discrimination firsthand then extra shame on you for judging us)

      Depending on where you live, when and where the doctor went to school, what textbooks they read, what conferences they attend, their specialty — and so many more factors — you could very likely end up with a doctor who has “heard” of EDS … but they read old nosology, or they confuse it with Marfan’s, or they believe it doesn’t cause pain, or they believe it doesn’t exist. Having heard of EDS means nothing.

      I personally have only ever met one doctor out of dozens who actually understood the implications of having a genetic malformation in one of the most prevalent protein structures in the body: my geneticist. Every other specialist I’d seen maybe had heard of it, but didn’t bother to read current studies, or had not heard of it at all. Therefore I have been passed off more times than I care to count. Many of us have medical PTSD or medical anxiety. Oh, and if you have anxiety, guess what they’ll blame every symptom on!

      I call this patient blaming. “You’re too fat. You’re not exercising enough. Change your diet, stop smoking, You’re depressed. It’s just stress. You’re hysterical. You’re lying. You you you you you you.” Everything can be pushed onto the patient. A lot of doctors, not all, but a lot, will do this to avoid having to do their jobs.

      I don’t care the pressure you’re under, what your hospital says you have to do in a day. I don’t care how jaded you get. I don’t care how many addicts you’ve seen. I don’t care if you work with children with cancer on the weekends and you sneer at my constant headaches. “You don’t know how good you have it.” Because realistically you don’t know me, you don’t know what I’ve been through, and you don’t know what I’m going through, especially if you not only don’t ask, but assume. You can find a new profession; I can’t find a new body. Do your fucking job, is what I say to those people. If you have a patient with a condition, learn about that condition. It’s not that goddamn hard.

    • EDS has links to dyslexia and other learning disabilities which is why many don’t use correct punctuation or spelling.

      I’ve had many doctors not know what EDS is or be wildly misinformed about it. It happens. Doctors forget things too – they are human.

      What I will say is that there are definitely people who say they have EDS who are faking. That’s clear when they claim to be cured from ridiculous things like sound therapy.

      This doesn’t mean that EDS isn’t real, though. There’s many of us who do have EDS and suffer a lot from it.

    • Amazing how some rando dude feels the need to have some near-conspiratorial analysis of actual, real EDS patients that show up to correct some of the assumptions in this article, assumptions that harm us every time we set foot in a doctor’s office. We are here because someone shared this on our Facebook page and we don’t like standing by when sickening, harmful misconceptions about our condition are spread around.

      If EDS is so commonly understood, explain to me why I first went into a doctor’s office with symptoms at age 8 and didn’t get diagnosed until I was 30. And then explain to me why our page is filled with heartbreaking experiences of hundreds of people being dismissed and turned away by doctors. Maybe educate yourself a little more before you offer these remarks, which are offensive and pitifully wrong.

      The formatting on this comment program is off and erased my paragraphing. You’ll notice that, as impressive of a human specimen as you are, your line breaks aren’t indented either. Hmmmm!!! Something super FISHY is going on here …

    • Many people with EDS are members of online groups. I am. Someone just posted this to my group, so here I am. My own case isn’t as bad as some (luckily), but it has challenges ranging from hypermobility-related injuries & surgeries to gastrointestinal & neurological issues that also directly affect my ability to function. My experiences with doctors have been, & continue to be, quite varied. Some are notably willing to take me seriously, and others tend to, for lack of a better phrase, blow me off. Those bad experiences are more frustrating than words can express.

      IMO Jay’s reply to your comment is excellent, especially in terms of the fact that we tend to be well-informed about our illnesses. And yes, telling our stories over and over gets old and frankly, I’m sick of doing it. You can bet it sounds rote – it certainly does to me. But, lacking a better system at present, I continue to obediently reel off my history, meds, etc. I’m not out seeking narcotics. Fortunately, I’m able (at present, anyway) to control my pain without them. In fact, the only pain meds I’m using are OTC.

      But I do have symptoms (possibly a type of dysautonomia) that aren’t being addressed well. I feel I’m hitting my head against a brick wall, and for now have stopped even trying to pursue an answer. That’s how discouraged I am.

      I don’t know if it’s related, but the quality of my care has been lower-quality, in general, since I lost some supplemental health benefits after a divorce. I don’t know how or who to ask, but I’d like to know, if only to be assured that I’m wrong in that concern.

  7. Melissa Stoll on

    Wow I’m guessing you don’t have to live day to day on a shoe box full of different medications just to function! The whole two pages in med school you were taught about our EDS? I was diagnosed at one of the best hospitals in the US, Mayo in Rochester MN. So please do tell me how having EDS is so rare that people don’t have it. I’m sorry this happen to pop up on my FB page today and the shit this dr put that patient through because he didn’t believe was wrong. Almost having been killed by ignorant drs and thinking they knew my body better than I, and because I was in pain and they were done looking for reasons why I was in pain. So no thanks, you can keep your self indulgent ignorant comments to yourself.

  8. Oh wow!! Stuff like this is extremely upsetting to me because so many doctors didn’t believe me in the beginning and everyone thought I was lying when I was in the most severe, excruciating pain imaginable. The patient sounds like he could be suffering from Ehlers Danlos Syndrome, which is what I have. All this article is doing is making it more difficult for patients with uncommonly diagnosed conditions to get proper diagnosis!! Whoever wrote this sounds unbelievably arrogant and ill-informed. Patients with underdiagnosed conditions, that doctors are grossly uneducated about, have no choice but to become very actively involved with their own medical care, to learn about their condition and to advocate for their own health.

  9. “He rattled off his list of allergies as though he’d said it a hundred times. Few patients are that fluent with their medical history.” Are you serious? My husband is allergic to CT contrast, penicillin, and shellfish, my oldest daughter has life-threatening allergies to all nuts, suspected allergy to Zithromax, highly allergic to tomatoes, grass, cats, dogs, and shellfish, and until here recently couldn’t eat oranges and peas. My youngest is allergic to penicillin and cephalosporin type antibiotics. These aren’t even my allergies and I can list them off easily. I feel that it is dangerous to not know your medical history and that of your family’s, particularly if there is something serious in it and knowing a lot about those conditions is a part of that, particularly when you have a condition that a lot of doctors are unfamiliar with treating, such as Ehlers-Danlos.

    “In the setting of a contrast allergy we will often pretreat with steroids and antihistamines. He utterly refused this.” My husband almost died from contrast allergy. 15 years later an ER doctor wanted to do another one. It took some convincing that he would be fine with the steroid, pepcid, and benedryl. The same for the MRI. What do you do when one doctor tells you that you should not have an MRI and then another tells you that it will be fine?

    He either exaggerated or was mistaken about his time in Germany and being able to speak German. At one time I was an intermediate level in Spanish, but one day, I realized I’d forgotten almost everything I learned when I couldn’t respond in Spanish.

    “Somatization disorder has previously been associated with risk factors such as mental illness, sexual abuse, low socio-economic status, minority status, and female sex [19,21]. These patients are often ED recidivists and frequent various specialists who have not been able to give them a diagnosis or present them with a satisfactory treatment plan.” How much of this is because doctors don’t take them seriously? What is left? That includes everyone but middle-upper class white males without mental illness.

    “One study comparing the ED provider’s impression to a state prescription drug monitoring program found that such a gestalt had a sensitivity of 63.2% and a specificity of 72.7% for identifying drug-seeking behavior.” Make it at least 80-90% or higher and then I’ll be impressed. Being wrong almost 30-40% of the time is not “a good sense of who is and is not present in the ED for secondary gain” and it could potentially leave a lot of patients without the care they need.

    • Saw this article on the EDS Facebook page and I’ve been reading through these comments. Too many hit too close to home. I too am allergic to contrast. I almost died from my throat closing on the way to the ER from the CT scan. When I needed a cardiac cath for an arterial vasospasm, they needed to use contrast, so they prepped me with benedryl, pepcid, and steroid shots. During the cath I had an allergic response and I found out a few days later that the contrast had caused my thyroid to stop working properly. Have your husband be very very careful even with the “prep”!

  10. This article is infuriating. While this one man’s case does sound like it may have involved some deception, this article is full of the kinds of suppositions and assumptions that endanger, dismiss, and harm EDS patients daily. As others have pointed out, knowing your own medical history very well should not at all be grounds for suspicion; it’s what many of us with rare illnesses have to do to survive the incompetence and dismissal we experience from almost every doctor we meet. I recently had a very good specialist tell me, “You’re likely to know way more about your condition that almost any practitioner you meet.” Though she couldn’t do much for my illness, at least she had the grace and humility to tell me what has been obvious in every office I’ve stepped into: most doctors know very little about EDS, and we’re basically on our own for figuring out how to live with this debilitating condition.

    What sickens me is that doctors are on here reading this article, sucking down more of the ideology I see them judging me on the basis of every time I step in their offices: people with EDS are faking it, they are hypochondriacs, they don’t know what they’re talking about, their disease doesn’t cause pain, it’s all in their head, if they display any level of technical knowledge about their care, they are out of line. Above all else, I feel this article displays the idea that if the doctor can’t explain what’s wrong with the patient, the patient doesn’t have anything wrong. What a logical travesty, and all the more so for being so common among a subset of the most educated professionals in this country! While I’m sure fakers exist, there are far more people with real symptoms who need real help are getting turned away by doctors who are too arrogant and ignorant to give it to them. If you want to write a useful article, write one on that. This drivel is just giving uneducated doctors more self justification for turning away patients their pitiful ignorance can’t accommodate.

    Medical doctors who really want insight into treating their patients should join a chronic disease group on Facebook. One of the most common genres of post in my EDS group is about how someone was dismissed and ignored by a doctor and this treatment led to their harm. I used to think I might be exaggerating about how bad my medical care was until I joined this group, and saw hundreds of others desperately seeking advice and help for the kinds of situations I had endured as an undiagnosed EDS patient for years. Just this week, I was being tested for an autoimmune condition, and turned away for diagnosis by a doctor who swore up and down the one blood test he did was definitive for ruling it out. This sat wrong with me in my gut, and after I asked my Facebook friends, my gut feeling was confirmed: that test is rarely definitive, and my doctor hardly knew what he was talking about, even though HE was sure enough to send me away.

    Doctors, if you’re reading this: Don’t waste your time here. If you really want to help your EDS patients, educate yourselves about what it’s like to be A HUMAN BEING with this condition. Get humble, get curious. Join an EDS group. Figure out the kinds of symptoms and daily living we experience and commit yourself to helping us, to helping us when we have nowhere to turn. To really understanding our poorly understood condition.

    Or, stay here with this man, and feel snug and secure in your status as a human lie detector. We will continue to suffer, whether you call us liars or not, and we will continue to need real help.

  11. This is clearly getting a flurry of responses as it has been shared on an EDS support group. And understandably so.

    Whilst there must be a prevalence of people seeking medical help to fulfil an emotional need, there is a far greater risk of doing serious harm to those whose symptoms do not fall into a neat box. The red flags described are also symptoms of dysautonomia. A question that hasn’t been asked is what are doctors doing to discover why people seek medical attention if not needed? What are the underlying causes?

    From being told that I did not know my own body & that doctors with little exposure to Ehlers Danlos knew better, I nearly lost my own life from organ rupture, my daughter’s life from spontaneous membrane rupture in-utero, and have been left with irreparable spinal & nerve injuries after regular dislocations were treated without the consideration needed for hypermobile joints.

    Now at 37 & a wheelchair user, I have a positive relationship with my GP who has actively encouraged me to engage with the Expert Patient program to allow me to accurately explain my condition & current medication to medical staff. As such, I can list my mediation, allergies, and symptoms. This makes me neither a drug seeker or faker – this means taking responsibility for my condition and self-care.

  12. I cant see the author of this article specified. I can only assume that is because this doctor should be or already is unregistered or struck of the board from being able to practice medicine. This poor patient who experienced this clearly has a case of malpractice against the treating physicians and particularly the writter of the article. The publisher should be shamed for publishing such tripe. Thank you for bringing attention to how many inadequately trained doctors there are out there and to the extreme abuses vulnerable complex patients go through at their hands. I hope the patient survived this horrendous and egregious ordeal brought about by an arrogant and ill informed individual who mas shown how inadequate medice can be in penning this article. This is criminal abuse of a serverly ill patient.

  13. I had testicular torsion over a year ago. Was denied a physical exam. Went home crying because of how bad I was treated by my primary. She said I had anxiety and set me up with counseling. I almost lost a testicle and no doctors will listen to me now, and it’s reoccurring. Been to the emergency room 2 times and sent home. Told I’m fine. Doctors are as bad as cops with the stereotyping. Finally got an appointment set up with the urologist, and my new primary would only write the referral for erectile dysfunction. That’s the only way I could get an appointment and my erectile dysfunction is almost back to normal. The suffering I’ve dealt with this far is hell. The medical field is broken. They swear the ultrasound disproves testicular torsion. It doesn’t. That’s why it’s the 3rd most sought after medical malpractice lawsuit. I had to manually correct my own torsion, and it was after over 24 hours. Testicles shrank for 3 months. No one checked me over and now I’m in hell. Can I order a polygraph test to prove to my doctors I’m dealing with this? How do I get help.

  14. This doctor needs to have his license revoked and should consider seeing a psychologist for narcissistic personality disorder. I too have Vascular Ehlers Danlos Syndrome as well as a medical degree and this patient was absolutely correct. Mast Cell Diseases and Postural Orthostatic Tachycardia Syndrome are almost always seen in EDS patients as is an MTHFR Gene mutation. If you have this mutation there aren’t many medications your body responds to. Believe it or not, Fentinol is one of those for me. With a dose of Fentinol I feel absolutely nothing. A Tramadol does more for me than Fentinol just as a comparison. Also going into antipathetic shock is very scary. I have been declared clinically dead when put on Low Dose Naltrexone for pain. It resulted in over 50 seizures a day, abdominal spasms so bad that I lost total control of my bowels and blader and broke three ribs. I was told I’m a drug seeker and released. My pain management saw me the same day and I was in life threatening condition with a blood pressure of 179/156, HR of 212, oxygen 72%, and a temperature of 102.6 He had to call the hospital for a direct admit into the ICU. This doctor is an EDS specialist and says his patients always come out of the hospital in worse shape than they went in. Having Mast Cell Diseases you can have allergic reactions to very unusual things for example, My mother and I are both allergic to Benedryl. Its doctors like you who are responsible for the deaths of EDS patients. You are the reason why people like me have to go into cardiac arrest four times and are told “its conversion disorder, she must have pulled the leads off” or “hmm. That’s weird but you seem fine now. A doctor like the ones when I was first paralyzed who would pick me up onto my feet and let go dropping me onto the floor saying this is all psychiatric until I they realize the natural reflex to catch myself isn’t there and I’m on the floor with dislocated knees, ankles and hips and go home covered in bruises from the medical abuse. Its people like you who swear they know all about EDS and go do a simple Gullbladder removal leaving people like my mom on life support because you screw it up and aren’t aware of the elasticity of our tissues cutting into the patients liver. Doctors like you who cant be sued, will never take accountability and should trade jobs with the guy hanging on the back of a trash truck because he probably knows more about empathy than you do because all you care about is your ego. Almost all EDS patients have Complex Traumatic Stress Syndrome because of the abuse and neglect from people like you. Just get out of the field now. You let your patient down, broke your Hippocratic oath to do no harm and this will stick with this boy and damage him for life. I always say I would never give this to my worse enemy but i would love to let you try this condition on for size and experience the abuse and neglect we do.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4000178/

    https://www.ehlers-danlos-initiative.de/fileadmin/user_upload/EDS/aktuelles/Complex_pain_in_adults_and_children_Original.pdf

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