Remind yourself that it's your health that really matters rather than letting the fury about the organisation or clinic build up like a pressure cooker. Take a newspaper, book, crossword or smartphone containing emails you need to respond to. Be busy. You sit down to talk to the doctor and things you have been obsessing on for weeks suddenly vacate your mind leaving a gaping hole.
This is "white coat syndrome". It can also affect your blood pressure, pulse, breathing rate, and produce other annoying symptoms. It's surprisingly common. Doctors are well aware of "white coat syndrome" but they can't read minds. So if it kicks in you could:. Tell the doctor you are nervous. Sometimes getting it off your chest can calm you down and help you remember what you wanted to say. Have your list of questions to hand. You don't want to be scrabbling around for a scrap of paper at the bottom of your bag. Take a friend with you. Having a second set of eyes and ears in the room can give you a different perspective later.
If you've told the other person your concerns they can help get these across to the doctor. They can also help afterwards if you're trying to remember what the doctor said. Remember this is your time. You've got your questions. You need answers. Don't be intimidated through fear of being a nuisance. Sometimes the logistics of taking pills can feel overwhelming.
Here are some ways to make it run more smoothly:. Set a timer. Most mobile phones or kitchen cookers have an electric timer. Set yours for when your next dose of medication is due. Have one medicine cupboard. Keep all your medication in it so you won't have to hunt around for different drugs at different times. Get a pill organiser.
These magical plastic trays really help you work out what to take and when. Keep back-up medicine. A small amount kept in your handbag or briefcase can stop you missing a dose if you forget to take it with you when you go out. Feeling better is very rarely a straightforward march towards wellness.
When you face a setback there are many things you can do to cope and keep going. If you have to go back to hospital try to think about things both big and small that you could do differently this time. If it took you a while to get the things you needed last time such as books or music, make sure someone brings them in to you as early as possible this time. If you had too many visitors before, get a message out that you appreciate good wishes but cannot see too many people. If you were in pain when nurses moved you last time ask for painkillers in advance.
It may be that you need to talk to someone about how you are feeling. Having a relapse or a setback is hard to cope with. You may be able to get support from your family, friends or direct medical team but there are other specialist staff in hospitals to talk to. Ask the nurses on the ward if you can see a social worker, counsellor or psychologist. Most hospitals also have chaplains or other religious leaders to offer emotional or spiritual support. You might think the answer to this is obvious but good health is actually a complicated concept.
That being said, if you get a hurried, hostile vibe from a doc at the first visit, look elsewhere ASAP. Did u make a complaint to medicare Re inappropriate pain med dispensing re this pain clinic. Did u already fire these docs at this clinic before going To medicare. If u did, then medicare probably checked into Your allegation and may have fined them or are doing an investigation. They are the ones that probably blackballed You in the first place.
Remember, you may need them once you are a certain Age. SO, your Complaint to Medicare is not being taken lightly. They probably Went after this clinic. And I also would like to know How are you not going to provide records. I have the opposite problem you have and I am Being undermedicated while currently going through an acute Exacerbation of a.
Very painful neurological disease. I have one of those medicare advantage plans. Also, I read one of my other doctors medical records and I have Been profiled as a drug seeker because of this doc writing A very libelous statement re my appearance, mood, etc.
He also Wrote many other lies, distortions of the truth, statements taken out of original context, omitted statements and the list Goes on. I plan to disenroll but I am afraid other Providers will be biased towards me. But, I cannot tolerate Being with their doctors anymore. As for me, I am going to see what the Americans with Disability Act has to say about refusal to adequately treat A patient in pain. I am disabled by this pain, unable to work Because of severity of pain.
It is a Human Right to have pain treated adequately. I hope my feedback has helped you. Patients with Chronic Pain need to stick together. I habe been discriminated and judged by nurses and doctors when they find out that I am seeing a Pain Management doctor, this one nurse completely changed the way she spoke to me and treated me since. I understand. I have no choice but to live with pain management. Walgreens treated me like a criminal. I have never even had a ticket in my life. Our crimes???
Living with diseases, illnesses and severe pain. The real criminals are the ones who judge those of us who struggle just to get by daily. Does anyone think I enjoy living half a life, or anyone with chronic pain? We would gladly hand them back to you for a life free of pain, a life free of insomnia and a life free of your ignorance.
Hang in there. We are all in this together. Believe me! Until i started reading here, i thought i was alone. Im probably replying to this late, but i spent 5 hours today crying between phone calls to various doctors and insurance offices. It just feels hopeless. I brought a food journal, which she claimed to have taken a copy and read, so she either just thought i was lying or didnt read my notes, which means shes a liar.
Trying to find care any where now is impossible. Im beimg blocked everywhere i call. Im terrified of even going and feel like id be wasting my copay and insurance cap to pay to be mocked.
I totally agree with you Martigras. I have my best friend drive me to all of my appointments as well, because 3 years ago I was diagnosed with disease number 34, CRPS, and was told not to drive if at all possible. Just stopped me instantly which is extremely dangerous and the withdrawals have me wanting to kill myself. It is that bad. But he did let me have my prescription for the 10 m.
I asked him what I was supposed to do about the horrid withdrawals and again why was he doing this to me? By then I was crying. I already take 2 m. Xanax for GAD and have for 24 years! Valium has never done anything for me. He gives me two, 10 m. As with the majority of pain management doctors, mine is an Anesthesiologist. And most of them just love giving those spinal epidural injections even though the majority of my diseases and illnesses that cause me chronic intractable pain have nothing whatsoever to do with my spine, but yes I do have severe osteoporosis and several fractured discs, bulging, torn and herniated as well.
He has never even really cared about any of my other diseases or illnesses. Just concentrates on my spine. The month prior to this appointment, he had asked me to get a letter from my Endocrinologist who had already sent two letters last year and the year prior to that, telling him to STOP giving me the injections because the steroids were destroying my bones and making my severe osteoporosis even worse.
He did not care and I had to keep agreeing to get them. Anyway, my Endocrinologist called me after reading my email asking for yet another letter. We had a nice talk and a few days later he sent me the letter to give to my pain management doctor. My previous specialist prior to getting in with this doctor was a Rheumatologist. And the Neurologist I was seeing said I would never be a candidate for spinal surgery and to never let anyone do it. He told me if they tried to put in any hardware, my bones would just crumble.
Somehow I managed to inherit the osteoporosis at an earlier age than most people. My father had it so bad he lost 8 inches in height. And he got it from his mother and her legs were so deformed with it that poor woman suffered so badly from that. No one would give her anything for the pain. God it was horrendous for her and my father as it is now for me.
Having those injections, and he gave way too many in a year, caused more pain than you can being to imagine. He just simply did not care. He is all about the money those bring in. The first one he ever gave me, he missed and I literally jumped up off the table. I ended up having the most horrible spinal headache OMG! Oh it was terrible. The man has no real medical personnel working for him at all. After the injections he leaves immediately. The doctor or someone with medical experience is supposed to stay with you for at least up to 15 minutes after having one of those.
All they do is take my blood pressure and make me sit there for 10 minutes and I go back to the exam room, wait on him to come in with my prescriptions, one of the scribes sets up my next appointment and we leave. And something else he never does that has always bothered me and is a violation of my privacy, he never closes the exam room door. He has had me pull down my pants, pull up my blouse with other patients right across from me or walking down the hallway. They can hear everything discussed which should be kept private and see everything as well. My friend that takes me finally got sick of it at one point, got up, closed the exam room door and the doctor got upset and opened it back up and put the chair in front of it like they all are done.
Patients have a right to privacy with their doctors! Before I got in with this doctor, I was seeing another one who I found out a few months into seeing him, had been in trouble with the State Medical Board for prescribing himself opioids. He was on 3 years probation the few months I saw him.
He even had a Deputy Sheriff that sat up at the front desk and he was the one who handed you your prescription after inputting it into the computer. Until I called my Neurologist and he had me come in and totally freaked out about what I was going through and telling me how dangerous it was to just have the stopped like that. That it is considered a medical emergency and I should have gone to the hospital and been admitted and given my Morphine. Anyway, he of course ended up helping me until I could get into my current pain doctor.
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He made a point to let me know if that EVER happened again, to go straight to see him and he would help me out. I wish he was still here! And the pain from the CRPS is the worst pain of anything you could have. Worse than amputation. I found out this disease has no cure and it often affects every organ in the body and many people die from this. It also affects the skin, veins, arteries, you name it.
It is caused by damage to the sympathetic nerve and it can be something you did that was as minor as stubbing a toe. It also causes osteoporosis and needless to say, it has made mine even worse. The bones in my lower legs are deforming and getting worse. The pain from that is terrible. You mean if I was in a car wreck and all busted up or fell and broke bones you would not give me something more for the pain? They never answer that one. My friend and I went to the State Medical Board the next week after that appointment and I filed a formal complaint against him, and they were to have done something by now, but I have not heard one word.
Doctors cannot withhold the very medications you need for the diseases and illnesses you were declared disabled from! My ankles have atrophied to the point I can no longer bend them. My legs are so bad and the pain as I stated earlier, is worse than what I have had going on for over a decade. It would probably send you off into a huge flare. Anyway, my primary care doctor said he would help me. I cannot take the Clonidine and that stuff is so nasty and I had so many issues after trying to take it years ago when I went those 3 weeks going through withdrawals I just cannot take it.
Plus it interacts with so many of my other medications especially my heart meds. God it made everything so much worse. And then once you finish that nasty crap, you have to be weaned off of it too because it causes withdrawals too. That was also one of my reasons for the report I made against her to the hospital administrator.
I realized it was serious and needed to be in a safe place for my own protection. Every urine sample I gave upon admission was negative because I was not using drugs and I told her to check my chart for that information. She just looked at me with this hateful look in her eyes and stormed off the unit.
Some one is upset abowt typos or perhaps just mispelling. I would personully never make a egregious speeing error. And …. Mainly—she was top of her class, an immigrant and a female. She liked that response and showed me her first smile. I was denied hysterectomy for thirteen years just because I look like I am not quite all there. By the time I was granted hysterectomy, it was nearly too late. Even so, my gynaecologist said I could not have surgery without parental consent in spite of being I have a physician friend who was denied a tubal ligation because they did not believe she could make that decision as a 26 year old.
She got it done eventually. No kids. Same thing hapoened to me. My uterus was enlarged to 3x normal size with endometriosis, masses, scar tissue, bleeding spots, and those spider web scars that form between orgams that i cant remember the name of currently. My first surgery for reproductive systems, i was 11 years old. I am so sorry you feel that way, mine is 2 years older than me and is a God send! All doctors are not the issue. A particular age is. All doctors are brainwashed though. I felt that way too. His whole demeanor changed when he found out I was a nurse and did research… and oh, yeah, I had terrible arm pain.
Besides taking an xray for rotator cuff tear he spent the entire visit arguing with me about getting an opioid Rx. I was assaulted and my head smashed on the pavement. I suffer with post concussion headaches. My doctor finally gave me Percocet for the pain. I have to wait almost a month to get into a pain clinic but they want me to up my anxiety meds more vs dealing with the pain. Probably an emergency room visit for me again. So dumb. I had a concussion 2 years ago; drove myself to Urgent Care and got nothing for pain and was told no OTC analgesics either, no xrays, etc.
I too am a victim of patient profiling. Im pretty much textbook bullied by my surgeons. On June 17 I went into surgery to repair a strangulated umbilical hernia, I developed an infection shortly after and the wound opened up. I suffered for three days with fevers excess of my dr made me wait until my appointment to be seen, I asked for some relief but was refused. Long story short the surgeon put me down as a self mutilator due to some scars on my arms that were at least 15 years or more old accusing me of possibly contaminating my wound, I finally went to a new hospital system for help all went well until my surgeons records were requested.
This has been going on a year now where I have developed post surgery abdominal abscesses for unknown reason and I have been labeled as possible munchousen sp I even was assessed by a psychologist and passed with flying colors no mental illness. Recently I developed another abscess and it has been discovered that my bowel has been leaking and I will need a resection surgery to correct it, but due to the way I have been treated im quite frankly scared to go back to the hospital.
I KNOW the terror. I was more scared of abuse in another hospital than death itself. I know exactly what you mean Julie. At this stage I would like to see what is legally possible, but cannot afford a lawyer. Sorry to hear that. I wish you the best and hope things can turn for the better for you. I have been through hell to but I am ready to file suit. Doctors in my own family are saying do it and I understand how hard it is to get through medical school but this is unacceptable. I am responding to this commenter because I cannot post my own independent comment on mobile.
My psychiatrist mistakenly gave me a document stating all of his diagnoses of me. Two of which he never disclosed to me in consultation PTSD and non specified personality disorder. I just left a message on his machine requesting explanation. What else should I do? Am I overreacting? What should I do before something gets worse? It is a horrible husband and wife team there now that berate new patients and out right tell you to figure out if you are wasting your time. I recorded this visit.
In the end I was diagnosed with an infection thru bloodwork I am sick and was told he would not treat it. Dear Wible. I no Iron in and all blood levels were very low. Vitamin D. Then in I bowel and bladder repair using the mesh. That surgery did turn out well and I had to have to cut the mesh. I feel I being profiled. I could write a book. Think I am crazy. Labeled chronic pain after rear ended; two unnecessary surgeries gone south, still labeled chronic pain. Given mega opiated; got off them but, no help from military hospital where there are tons of incriminating evidence.
Mayo also denied care after hernia repair gone wrong — chronic pain. It takes real strength. Since October I have had some female issues. I am 55, had 3 c-section births, endeometreosis 3 times, and a partial-hysterectomy in Upon a regular checkup in , I went to a nurse practitioner recommended by my mother-in-law. Then, after having some spotting 4 times in 5 months, I decided to go to practioner to be examined the first week in June All 3 of my younger sisters have had endeometreosis each in different cases, along with fibromyalgia.
So I have had a concern because of my symptoms. The practitioner ordered a urine test to rule out a uti. I have had reoccurring bladder infections since the birth of my first child, so I knew it was negative. She also ordered bloodwork and did a swab on me. This all took place from a Tuesday to Friday. Monday I got a call that the swab was negative and Tuesday a call on my bloodwork. Different lady than from swab results.
She was nasty saying I needed to get blood check more than once a year. My husband is self-employed and we have insurance with Christian families to pay as we go and help with major expenses. Then I was prescribed a cream my husband picked up without consulting me. I was sooo upset that I was in tears. First, this cream listed reactions that are the same as my symptoms and warnings to not use for those with MY medical and family history in addition to congestive heart failure, which my dad died of at age I could not get practitioner to call me herself and out of left field, the third call I was told to use the cream and schedule to see a gynecologist.
I have him listed to access my records. He stood in the lobby window and asked 3 times to speak to someone in private.
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They ignored him and he was forced to tell my situation with patients and other staff around. An office manager was supposed to call me about the rudeness and my situation, but that never happened. We tried a couple more times through the end of June with no results. They would be fined but I would not get any compensation for myself. I just finished a letter requesting my records.
That is horrible!! This is what happens when there is a breakdown in the sacred patient-physician relationship. Too many cooks in the kitchen and nobody knows the stove is on. Believe me, we did not go to medical school to treat patients like crap. Third parties have inserted themselves in between doctors and patients and created a culture of chaos and distrust that makes it very hard to provide health care. Wish you lived down the street. There is a map of ideal clinics on my website.
Check it out and maybe I can help you find a new more ideal doctor. I agree. Profit over patient care is the norm when it comes to these large and powerful institutions. Bad experiences are incentive for those of us without money to find new and innovative ways to get well. I am amazed at how well people do once they realize that you CAN take your body back from corporate control. I had a filling that I needed to get done by on my lower left tooth professionally referred to as When they placed the original crown in my mouth, I absolutely loved the way my smile looked and felt.
That was because my smile felt more symmetrical and I felt prettier, which was a significant psychological benefit as a trans person actively seeking to transition. However, my doctor made a minor adjustment to the crown, which tragically led to that feeling being ripped from me, as my smile went back to the way it was before, which was a problem for me.
Disgruntled and feeling completely disempowered as a trans person, my doctor and his staff not only repeatedly misgendered me, but also used my lack of presentation in feminine clothing as a piece of evidence with which to patient profile me as drug addled after a mildly contentious dispute, wherein I questioned their authority as a dental official, the dispute was about the crown that was originally doctored and I was asking if that situation could be remedied.
That being said, I am looking for a new doctor; someone with equal credentials but better patient service in the area. I wrote this post inquiring as to whether or not I had a legal options for being unfairly patiently profiled? In NYS trying to find a lawyer to hire is like finding a doctor for reasonable medial care…. We need to organize ourselves… not just doctors or patients… that puts up barriers. Joss, this is just my opinion, but part of the problem is that physicians have considerably to put it mildly more funds than you do to get the finest attorneys, malpractice insurance, the power to label you as any kind of person they want to and unfortunately much of society still has the opinion that because they are in a position of being held up as more respectable, unquestionably honest and of a better class of people than Mr.
Joe Citizen…that they are not to be questioned about even obviously bad behavior. Some people are even in awe of them and would never question their judgement or morals. They are human beings just like you and I and just as flawed…believe me. They are in a position of power and trust and have the ability and means to decide if you will live or die.
Think about it. They make judgements based on your physical condition because they have confidential information regarding your health history and have been trained to do physical examinations and be aware of a serious medical condition you could possibly have such as a serious heart problem or a deterioration of your vision that leads to blindness. Anesthesiologists have your body in an altered state on an operating table and have control of your very life when you are completely vulnerable, they order testing of all kinds and have the knowledge of those results, your complete medical history, allergies some of which can be deadly for you if you are very sensitive to a certain drug and cause you to go into say, anaphylactic shock which can kill you and prescribe medications that you trustingly put into your body without question unless you are a sceptic like some people I know lol or just are a fairly informed person who checks out a PDR first…a book that gives info on drugs commonly used by medical professionals…there are books out there not as complicated that are more understandable for the general public, before putting anything in your body lol.
Enough of this rant. I guess after you get burned a few times you just get a bit jaded. I dread the day he retires. I have had some really great doctors and some not so great, But a couple I have had as my doctor or have worked with in a medical setting had the truth be known…OH MY! Need I say more? I am very imperfect and do not mean to sound holier than thou, but have the need to get certain things off my chest.
I have heard of someone who was a patient that almost died when in a very good smallish hospital that was given a drug or combination of drugs that came close to killing them and had to rushed to a major medical center and it was hushed up. Outrageous sounding but a true story.! My doctor profiled me as a Hypochondriac as a teenager. She was convinced that everything I experienced was related to puberty stress. However, when the symptoms continued long after puberty and even multiplied, she insisted they were due to the stress of college.
Many of these symptoms were serious red flags like unexplained weight gain, insomnia, depression, very dramatic mentrations and the delays between them, unexplained periods of extremely high blood pressure, etc. I rarely ever get anxious about anything without due cause, and these were very serious symptoms that needed to be addressed. So, to be labeled as someone with GAD was an incredible insult to both myself and people who truly suffer from it!
It was a humiliating experience that I never want to go through again! He prescribed them and it helped so much. In addition, I am forced to fill out a long survey about my smoking every time I go for a visit. I have to listen to some young girl lecture me about smoking for ten minutes before seeing the doctor on every visit as well.
I have already had a doctor misdiagnose me. Thank god my child does not have it! This doctor totally dismissed my symptoms because I am a smoker. Can I sue my current doctor for discrimination? Punishing me does not encourage me to quit. Do the folks with diabetes get a survey on how many bags of chips they eat? Do diabetics get medication withheld that could relieve their suffering? Does some 19 year old come in and give them a lecture on putting down the fork? Just wondering…. Good points. Health care by robot automatons. By electronic medical record prompts and algorithms. Generally you have to prove a bad outcome due to deviation from community standard of care.
Assembly-line medicine is not health care. Thank you for caring enough to just talk about this subject. Please stop assuming every patient is drug seeking, lying, uneducated, homeless, overweight, a wife beater, a child abuser or beneath you, simply due one fact…they did not walk your path. Your path of opportunity.
They all will be a patient one day and if there is justice they will remember every patient they misjudged and mistreated. We never intended to harm anyone. We came to medical school just wanting to help people. Sadly, we were dehumanized in our training and abused. Hey, I am an other statistic. I have been in chronic pain for fifteen years, Pudental Neauralgia and IC. Nerve pain can not be seen by the naked eye nor the best X-Ray equipment.
Every doctor acted the same, dismissive, looked at me as if I was a pill instead of a human being who needed support. I received no medication. My anxiety heighten every time I had to see a physician. My fear of mental abuse keep me away from clinics, even when I needed help. My anxiety got so bad I could not stand, becoming weak and numb. I finally made an appointment, hopeful for some guidance, the whole visit I sobbed uncontrollably. She told me to do yoga, and said I was to complicated for the clinic. I was dismissed with no medication or any direction.
I was devastated! I can not stop crying, feeling abandoned. I am seeking a phychiatrist hoping and praying he will help me. We all need to talk about our experices to support each other. Remember you are not alone. Write your State Senator to help pass a law against physicians profiling and discrimination. We have a disease of chronic pain that needs support, compassion, understanding, and Love. I am in a situation now my health is being neglected.
I recently got my disability because I have such severe neuropathy I fall, I want feel my feet and I will just fall. These are not even the only medical problems I have. But I had a doctor for near 20 years had me on strong pain meds for the problems. I had a good job and Insurance. Then I lost my job and I fought for 3 years to pay for my Insurance under cobra. And then lost out my unemployment stopped. Well In the meantime I was loosing everything my trailer my car got repossessed. And had to move into a hotel well both my daughters were living with me and we had to have an apartment type suite so I had to have a boarder to share expenses so I let a friend of mines daughter also live with us she was 29 just like my married daughter and my youngest was almost Well one of them or there friends stole a zanax RX from me and even though I was going to prosecute my own family, I had police report and turned it over to the FBI not only did the doctor cut me off and also did not take me seriously neither did the FBI.
So I have been through hell even getting my disibility. Thank god I did. But the doctor that helped me was 90 years old and retired. He referred me to the pain clinic at this county clinic that is for less fortunate and I was treated kindly at first he retired and within 6 months I was discharged out of the clinic. Mine is a long story and this is only a short portion of it. But I am starting to think I am crazy and need to see psychiatric help.
And this is very serious and true. Thanks for Listening Donna in Birmingham. You are not crazy Donna! This past November after 25 years of trying to get a diagnosis for the low back and hip pain I had been experiencing along with constant GI issues, I was diagnosed with Ankylosing Spondylitis, Inflammatory Bowel Disease, Ehler Danlos Syndrome, and Fibromyalgia.
I have lost joints due to fusion. There is still a preconceived notion among Doctors that women cannot have AS. I have been prescribed anti-depressants to deal with what I know now is an autoimmune disorder, and a genetic condition that allows too much space in my joints which causes constant pain. I do not even ask for opiates due to the stigma attached to it anymore. I have had pharmacists refuse to fill my scripts. I have had emergency rooms refuse to prescribe anything stronger than Tylenol.
If Tylenol worked I would take it and never need medical intervention. I have given birth to four children and that did not hurt worse than a AS flare. It is a sad day when Doctors who swore an oath to do no harm are more concerned of a malpractice suit due to narcotics than actually caring for the patient in front of them. It is a sad day when patients are required to urinate in a cup to receive medication.
No other class of patients are required to submit a urine screen to obtain their meds. Some medications are equally as addicting. It cannot but appear we are profiled and targeted. For me it would be easy to obtain verification through my medical records that I do indeed have a condition, infact several, that causes chronic pain. I know enough to make sure I see the same doctors for my conditions. I go to the same pharmacy yet I know I am in a database identifying me as an opiate user.
No other information as to diagnosis or medical history is in that database. A pharmacist has the power to deny me the medication prescribed by my Doctor based solely on this information. It is such a frustration to be chronically ill, have chronic pain, and be treated like an addict. That is why I started the Ankylosing Spondylitis Project and we work with another group, Patients not Addicts, to attempt to change this.
Doctors need to hear us. They need to see us as patients with underlying medical conditions. They need to fight for us and with us. We need them. We also need to be treated like patients. The current status of our medical system is a heart beat away from negligence. People will die either by their own hands or by a system that is set up to judge them before treating them. Currently there are million chronic pain patients in the US. Furthermore, alternative medicine to treat chronic pain often is not covered by insurance.
Physical Therapy for an incurable disease that I am restricted to just 5 visits a year. It is like the CDC did not even think about the repercussions of their own guidelines. That forcing people off medication that they did well on, with no history of abuse, would likely send people to meets with drug dealers willing to prescribe Heroine.
What is medical malpractice?
Congrats to the CDC they just made drug dealers a lot richer. THis is often the problem with prohibition type laws and guidelines. Those guidelines were also full of misleading and false data. It ends up pulling the cart before the horse. Less than 5 percent of chronic pain patients abuse their meds. So who are these guidelines targeting? They will have the exact opposite result because most people abusing opiates are not buying them legally anyway. That is the most frustrating thing about this. Also Doctors should be angry- as we are moving away from patient centered care.
My son is severely disable with Ankylosing Spondilitis. I knew he had the same thing I had when he buckled over while dining in a restaurant. I had no idea it was hereditary. When I was in teens I was informed by a GP that if I ever stopped moving I would be in a wheelchair within a few years. Physiotherapy and dance kept the worst at bay for me, but since the cancer surgery the chest tube was left in for nine weeks I have some serious issues. No one will listen. They refuse to believe me.
Overweight patients get profiled all the time. She was complaining of hip pain. Her doctor told her to lose weight and exercise. Finally tests were done but by then the cancer was extensive and she died 7 months later. I always wondered if she had been a thin pretty young thing if she would have had a different outcome. I also have been overweight my entire life. My weight varies 20 up, 20 down. I am active and work steady. I ride my bike, eat healthy and at 61 have no medical problems except my tendency to be a larger woman. I have mitochondrial disease. Pain is also a huge issue with mitochondrial disease and it was very hard to get pain meds and I was often treated like a drug addict.
I have many needs as a patient with mitochondrial disease and very little assistance from the medical community. It makes me want to scream. I have had a patient with mitochondrial disease. I had to read a lot about it, but I really enjoyed taking care of him.
Hope you stay curious and keep trying things. I was told I had mitochondrial disease by a colorado Neuro. I moved to florida this year and found a new Neuro whom I had called and asked if he would take me as a patient. He started me on mito cocktail. I saw him this week and after asking how I was doing, I told him I was still choking and had hand weakness making the use of my cane difficult. He also bullied me because I keep refusing cymbalta for pain.
Telling me if I was really in pain I would take something. I will never see another Neuro again. I sometimes frequent the Er for multiple health problems. To later find out I have endometriosis which was causing my pain and excessive bleeding not a UTI. I then after having the endometriosis was back to visiting the hospital for pain in my lower abdomen and was given multiple pain meds because that is what they thought I had wanted. In result of the multiple pain meds I miscarried the child I was carrying and was implanting which was the result of the pain.
Another time I was profiled I was in psychiatric unit after trying to commit suicide. I felt it was the only way away from my abusive ex husband. While there I was given geodone an anti psychotic and ended up having a hard time swallowing uncontrollable movements of my tongue and my mouth was in a permanent smile. I found out I was allergic to the geodone. This is so sad. I am very sorry.
Sharing these stories is the first step to raising awareness. Justina, thank you for being willing to tell your story. In I became ill. At our first meeting, he noted that I had lost a significant amount of weight recently due to a gall bladder that had simply stopped working and subsequently been removed. In the months that followed, I was properly diagnosed with an auto immune disease and Fibromyalgia.
Because of this man, I no longer include information about my mental health on medical histories. Patient profiling is too real to risk it again. It is true that your medical records follow you from doctor to doctor. There can be erroneous information in the records that should be amended. It is a good idea to read your own med records every once in a while just to make sure things are presented correctly. As in any human interaction, there can be miscommunication, misinterpretation.
There is another lady with my same name in town and our records have gotten confused on several occasions. I find it extremely scarey info that was erroneously included will impact my future health care. This doctor and that doctor is sending each other reports so what do you suggest is best to do in this situation? Have you found amending them to work and how best to approach it?
Thank you for your lovely blog and fresh ides for being a physician. My dad was a solo practitioner and kept his home phone number in the book. He got calls emergency every Xmas morning and dutifully went off to the hospital. He got emergency calls every Xmas morning and dutifully went off to the hospital. Thank you for your lovely blog and fresh outlook on being a physician.
Ad you middle name to your chart or your maiden name or something. VERY important. It would be dangerous not to do so. You need to have your records accurately reflect who you are. He would not even look at test results from pain clinic and said that was not his field. The pain clinic did thirsting that proved I needed help with extreme triglycerides. He did prescribe medication but later visits said he had ordered testing. I saw many errors in my documentation from his office regarding these issues and he argued with me and said His records show it so it is true.
But the records were written incorrectly. The Social security administration perpetuates these problems by not allowing testimony from real people in work place and home that truly see your decline not a doctor that turns in erroneous reports and could care less if you can feed your family because you miss so much work due to multiple health issues…mine brought on primarily by Stickler Syndrome but the doctors never want to hear how my connective tissue disease means I need different or more attentive care than someone without a genetic disorder.
And nothing changes Pamela. The medical file is a legal document that does not permit of change. What would happen if doctors were faced with criminal as opposed to civil charges when wrong-doing has occurred? Is it feasible? I am 48 years old. At 42, I began to develop the initial symptoms of what over a dozen doctors, countless misdiagnoses, and thousands of dollars worth of tests would finally reveal…prolapse of my rectum, bladder, and uterus.
I had never heard of this condition. I did an exhaustive online search and was astounded by the articles that described my symptoms to the T. Thanks for giving me a chance to vent. Lisa Weinstein. Always therapeutic to write your story. And share it with your doctor. This is how we learn — and heal. When I was 28 years old and recently pregnant with my third child, I had severe hyperemesis gravidarum and landed in the ER to get IV fluids.
I was feeling pretty crummy and was not answering questions well as sick people often do. My husband was home taking care of our 1 year old and 3 year old, so I was alone. A doc I had never met before was extremely short and rude with me, asked me if I was on medicaid and suggested I get an abortion for my unplanned pregnancy. My pregnancy was not unplanned, I was in a great marriage to my doctor husband, I have a degree from an Ivy league school, and had good private insurance.
My problem was that I was very sick and I was young, so therefore my pregnancy must be unplanned and I must be on medicaid. Oh no. Did you ever give feedback to this doctor? Cultural competency classes are supposed to prevent this kind of thing, but there is nothing like learning from your own mistaken judgements. Great teaching moment if you had not been throwing up. My 88 year old mother got shingles on her back. After the sores disappeared she still had pain, but it went on for a full year and the pain was excruciating! She was in to the Dr and emerg several times and they told her it was common and gave a pain prescription.
Finally someone thought to do a work up on her and it was discovered that she had a terrible kidney infection! The aged are far too often just given a pat on the head and sent home. My mother tried to treat an abdominal issue on her own for eight years. When I saw the attendants looking after her I was appalled and asked if anyone had bothered to check if there really was something wrong.
Guess what? Riddled with cancer. They never bothered to check out any of her complaints. She bled out. A terrible, lonely death. When my son was a baby he had colic and was in pain.. I am a patient with Crohns Disease, R. I have been on almost every medication available for Crohns. I am currently on Humira since september and was on Cimzia for 3 yrs prior. I still have uncontroled daily pain, nausea, diarreah, up to 12 to 15 loose stools a day.
The fistulas are my main problem with bowel leakage daily, up to 8 to 10 pads a day and NO normal sex life. A very good friend posted this article and I noticed that you are 50 min south of me. I live in a small town, Sweet Home, Or. I am desperate to find a P. Doctor that understands my situation. I do have a GI doc in Corvallis. He works hard to keep me going but we are running out of options. I could go on forever but my need right now is to find someone, anyone willing to work WITH me and not give up on me by saying those awful words …… There is nothing more we can do, you will just have to live with it!
I am not that kind of woman to let those words keep me down. I was hoping, praying that you might be able to help me? Are you accepting new patients and do you accept OHP? Thank You for this excellent article and any help you can pass along ……. Desperate in Sweet Home! I do not accept a few insurance plans, but I see anyone who wants to see me. I do not turn anyone away for lack of money. That is what I believe. Debbie- I wanted to put my comment here and hope that you read it. Or someone else with Crohns disease. I have had it at least 20 years and I have been on all of the biologics, etc.
Wow, I related to what you said! First off, It made me ache. It went through its trials and I was almost part of the third but was too sick to want to maintain a high amount of prednisone that was required to maintain the integrity of the trial. I started it a week ago. My blog is chronicling it. As far as ERs, Dr. Is there a Pain Management Clinic near you? If not, can you maintain some semblance of relief on the prednisone? That is like a swear word or someone running their nails down a chalkboard to your body but taking just enough to help.
However, I am there with ya. Every system in the body is affected by Crohns. Joints, muscles, bone, eyes, ears, mouth, and nose! I have had wicked fungal infections that back up into those parts- And Iritis happens due to those muscles in the eye. I hate being a Professional Patient. And a mom….. So sad. Bless your heart. Having a good friend, mentor, faith are all that become left when the well has run dry.