Who else has been made to feel like hypochondriac or a "drug seeker" by MDs or RNs? And the perils of being uninsured

Hi Everyone!

Still reeling from a really horrific ER visit this weekend. Been living with the daily pain for 6 months now, but after giving myself an ill-advised face massage to "check for tumors" (I don't know what I was thinking but I was desperate). 20 minutes later I was crying and in fetal position. My mom rushed me to the ER where not only was I in the waiting room for 1.25 hours, but once I got back there, despite my vital signs being raised from pain and still being in tears and not able to even speak, I was treated to not one but several lectures on the dangers or Norco from the on call doctor. He actually said "we only treat emergencies here; what do you expect me to do for you?". It took my mom completely losing her cool to actually get a shot of Toradol and morphine, which helped but didn't make it go away. I felt like I was having contractions in my face - the pain was coming in waves. Eventually the doctors made the decision to admit me to help get the pain under control, after my Mom again said, "what is she supposed to do when this wears off, go home and suffer??"

Then to our surprise another doctor brings me a print out of my past pain rx's (for 5 mg norco) to show me how I was "doctor shopping". Doctor shopping?! I was uninsured from March - July! How are you supposed to visit a PCP on a regular basis when office visits are $280? And during that time everyone including myself thought I had "really bad" sinus infections, so every three weeks it was more antibiotics, more prednisone and 20 more norcos. I eventually signed myself up for insurance - out of pocket - in July just so I could get an appointment with an ENT, who I thought would do sinus surgery and "fix me". Not the case. I begged my old GP practice for a neurology referral - I was waiting 6 weeks before I gave up and found a better PCP with my snazzy new insurance.

I mean, what is a patient supposed to do when your only option is an urgent care clinic? Or a GP that has over 20 doctors on staff? I went to one of those for a few months, and this doctor in the ER is showing me how I had filled rx's from "so many different doctors". They were all in the same practice dude! Not only did I not get admitted, but I was made to feel so incredibly ashamed and chastised. I HATE that painkillers help me. I HATE that those things are the only things that bring relief. I explained to this man that had I the choice, doesn't he believe that I would want a pain free life and not to need the pills for the pain in the first place? All I've ever wanted was a diagnosis! And heaven forbid you say that sometimes the pain is so intense that norcos don't even make a dent.

I can't say how many times I've explained to doctors (not specialists) that I want pain relief only, I have no desire to get "high" since I have a high pressure, demanding full time job, that I only take Norco as a last resort when nothing else (naprocen, tylenol, fioricept) works, because frankly, I have to use it sparingly because for me it HAS to work. Over-use will only bring me MORE pain because the medication will be less effective. Horrible experience. I still feel completely guilty and awful about myself. I don't know what to do. And all of these ER doctors were subtly hinting that perhaps the pain was in my mind...because apparently I can manifest a BP of 160/97.

Has something similar happened to anyone else? Have you ever been made to feel like a criminal because narcotic pain pills bring you relief? What did you do? How can you explain this to doctors? Help!

And sorry for the rant/novel! :)

You could print out the relevant pages from the FACE PAIN INFO tab at the top of the page and take them with you for another Dr visit.. The treatment you have received is barbaric, but unfortunately not uncommon among the members here. I hope someone who lives in the US will be able to offer advice I am unable and I wish you well in seeking working solutions.

If necessary, PM RED LAWHERN, he can offer better advice in this circumstance.

I am completely aware of what you're saying. This is exactly what I've been dealing with. I finally got into a pain clinic, the first appt. I felt like such a loser like I'm crazy or a drug seeker. Rediculous!! After I did the urinalisys and they got the results back that showed that I am not taking or over taking anything they treated me differently. I really believe that the way people treat US matters, the pain we're in is real and awful so a little compassion goes a long way in my book.

Boy do I understand where you are coming from and I think Red (moderator) did a study on this and how many people were blown off at the ER.

I first went to two different primary care and was told I had a sinus infection, then I went to a walk in clinic and was told I was "being a baby " and it was my sinus's and it couldn't be that bad!!! I next went to the ER and was told...I kid you not..."we don't treat or diagnose pain here" and then when I was asked about what I was taking for pain, I told the doctor I was taking my migraine pills, but I could probably eat them like skittles and they wouldn't help...I then got the lecture on how I needed a drug treatment facility and how it was obvious I was a drug addict !!!

I am not a person to ever ask for help, independent to a fault, but I called my good friend who is a nurse, and she sent me to an emergency walk in center where she knew the doctor and low and behold he finally diagnosed me!!

I have the best insurance on the market in the states, so it kills me to hear of people who arent insured because I know how hard it must be. I know I have been moved ahead of other people because the doctors know my insurance pays well, which is not fair at all.

Keep plugging and let us all know what happens

Wendy

It's so sad that so many of us have been treated the same way...with and without insurance. I also used to go to 2 offices that had many doctors. You were never guaranteed to get the same doctor to see you so my prescriptions had different names on it. I had an ER Dr do the same exact thing to me. My husband and I told him to call the number that belonged to the the different names so he could see that it was the same office. Since it was 2 am and they were closed, he refused to. Another time I was kept in the ER for 3 days being given as many non-narcotic meds as they could think of (like I didn't try Tylenol at home before going to the ER!). They refused to give me a narcotic saying that I wouldn't be able to go home afterwards (since when???). That being said, why keep me in the ER with all that noise and lights and commotion and uncomfortable chairs then cot for 3 days? Didn't make sense. I wanted to just get up and leave and go somewhere else but if I did that it would be considered leaving AMA and insurance would not cover the cost. That's the other thing: why do we go to different hospitals? Because some treat us so bad! It's a form of doctor hopping, yes. We're hopping away from the bad ones that won't treat us like humans that are in genuine pain. I know that they can tell if I've gone to other hospitals. I actually used to tell them upfront that my local hospital was not helping me. They only wanted to treat the pain their way without speaking to my doctors and without trying to help figure out the cause or how to make it better for more than 4 hours. Sometimes it worked. Made it seem like a challenge for them. Other times it didn't work because it was a challenge and they didn't want to deal with it.

They also do say the meanest things. I had one doctor tell me "You need to learn how to deal with the pain. You are ruining your husband's life." !!!!!!!!! Talk about kicking someone when they are down already. I was also told I had Munchausen, that I was an addict, that I was a hypochondriac, that I was finding excuses not to work...etc. I want to send all those doctors and hospitals a copy of my OR report from my MVD and ask them how I could have possibly made arteries wrap around 3 nerves.

I HAVE GONE TEN YEARS AND SO MUCH OF WHAT YOU SHARED I HAVE ALSO EXPERIENCED AND IT ALWAYS SEEMED TO HAPPEN IN SITUATIONS WHERE I WAS AT MAX PAIN. I GUESS I THOUGHT I WAS THE ONLY TN PATIENT WHO WENT TO EMERGENCY ROOMS WHEN I SIMPLY NEEDED TO BREAK THE CYCLE. THOSE WERE

THE MOST DIFFICULT BECAUSE I GUESS THE ER DOCTORS GET HIT FOR PAIN MEDICINE SO MUCH. I EVEN CARRIED LETTERS FROM TWO OF MY NEUROLOGISTS CONFIRMING MY PAIN. THAT DID NOTHING TO GET THEM HELP ME. I ALSO THOUGHT MANY IN ER REALLY DID NOT UNDERSTAND HOW BAD PAIN CAN GET. FROM

ANOTHER MEMBER I EXPERIENCED SO MUCH OF WHAT HAS HURT YOU. I AM HOPING FROM YOUR NOTE THE

MVD HAS HELPED GIVE YOU PEACE

RON-REAL TN

I had almost the opposite happen-- I went to my GP in so much pain that he gave me 60 vicodin, steroids, creams, etc. etc. bless his heart! He was my doc for years and knows me...I am sure the ER would have been a different story...

SO SORRY they made you feel like crap--obviously they have no idea...wish you could have zapped them with a stun gun and then asked how much they liked the pain!! LOL

I think because painkillers are now the leading cause of accidental death above car accidents the medical profession is getting pressured to reign in their prescriptions of pain killers. It was interesting I was just trying to find a new family doctor for my regular health exams etc and the doctor's assistant said... "we can not prescribe pain medication out of this office". I was not even mentioning or asking for pain medication. Just setting up my first annual physical!

This issue of not being treated with common respect and compassion is troubling. I have been taking my husband with me to all my medical appointments because I am having difficult talking without excessive pain. I printed out Wikipedia's entry on trigeminal neuralgia -- I am not sure that is the best - but I hand it to my doctors and medical attendants. Your entries on medical abuse is troubling. What can we do about this? Maybe we can carry a video on our smartphones? Or have a doctor's writeup? What are some ideas?

Sadly, yes....me too.

During a bout of severe breatkthrough pain, i visited two ER's with in two days, and pretty much got told they really couldn't help, even though the second ER did confirm the TN diagnosis (when i told, well wrote actually, them that i had TN...the doc said "who told you that?" then he proceeded..and i shit you not...to start touching my face here and there until i grabbed his arm. At which point, he said...yeah, seems like you might have TN) then sent me on my way...on the way out the door, i asked again about what i was supposed to do about the pain, the doc said "Well, i can give you five percocets, but that's all." Said with the look of disdain. I took them of course..for all the good they did. Luckily, that doc did mention gabapentin and said to ask my pcp about it, which i did....

All along the way...the dentists i tried at first, all thought i was drug seeking, one local clinic thought i was drug seeking, and the two Er's thought that too.....It's very frustrating to honestly need/ask for help and be treated like scum.

Even my pcp office receptionist thought i was drug seeking when i had my husband call to discuss the severe pain i was in...right off the bat, she said "doctor duncan doesn't prescribe pain pills, you gonna need to go somewhere else if that's what you're looking for."

It's just frustrating. And i'm sorry that you, and the rest of us, have had to deal with this stigma. (and lack of compassion and care)

~Mistee

I don't know if you all are in the US or not, but here, because of the "war on drugs" it has become that everyone is suspect. I could write a dissertation on how the war is a failure, but that is another story.

Did you know that in the US every doctor who prescibes has to have a license with the ATF (alchol tobacco and firearms agency) I couldn't get a refill of narcotics one weekend because my doctor didn't have her new license on file yet.

Heck you cant even get some cold medicines now without going to the pharmacist and showing id, which is then recordered so you can only get a certain amount per year. But if I want illegal drugs, hell I can drive 15 minutes into the city and get everything I want!!

I think all of this has caused the doctors to mistrust, and they are afraid of having an investigation or license pulled. Just my thoughts,

Wendy

It's so sad to listen to the stories of other people who have had similar or even much worse experiences than me. I have found that as someone that's relatively young (I'm 26), bringing my mom along with me to "vouch" that I'm not a drug addict can help give me some iota of credibility. Although not enough sometimes. It sounds like others do that as well, and bring a spouse or significant other with them as well.

I'm lucky in that my new PCP is incredibly compassionate and normal. She's younger as well, and I really feel like I can talk to her and have a "real" conversation. I had an appointment this week and when I told her what happened she was disgusted! And said that should I ever need to visit the ER again, to call the office and have her paged if it's off hours and she will call the ER or come if she can. We also had a long talk about the pain killers, and how to take them safely. I do worry because addiction runs in my family and I want to make sure I'm being safe but also treating my pain. I learned that having a good doctor can make ALL the difference. She also put me on Lyrica! It made my very drowsy and slow feeling but it did diminish the pain somewhat. It's not gone, just dulled. Which is an improvement! Hopefully the drowsy feeling will go away once I get used to them.

Julia, I’m so sorry you had to deal with that. I have had the same experience from 2 pharmacists and 1 doctor. Ive never felt so embarrassed and pissed at the same time! It’s been my experience that a lot of people in the medical community aren’t aware of the pain we have on a daily basis and that makes me very frustrated. I wish that for jus one day they would have to experience the pain we do. Maybe then there would be some compassion.

I’ve had some very awful treatment by medical personal… It’s disturbing to say the least. It’s hurtful and makes you as a person feel so much when it happens, feelings of ashamed, let down, anger, dispar, regret for going to the ER, and humiliation are just a few of the feelings. Well, at lest for me, maybe others feel differently.

I was having a terrible time about two years ago. It was about eight months into my journey with TN. It all started with me feeling a bit off, as if I was starting to come down with something. Over the course of four days it just got worse. Then I started to throw up. I don’t think it had anything to do with my TN. Over the course of a week and a half I could not eat or drink. Finally in the wee hours of one fine morning I could hold anything down and just kept throwing up. My husband rushed me to the small local ER. My stomach was in so much pain, and it was to the point I was just dry heaving. After numorus tests and some Iv fluids and medicines the doctor thought I was doing better and sent me home. I rested the rest of day. The next day I shakily went back to work. Through out the day I kept feeling worse. Finally I had my head down and just rocked my self. After twenty minutes of this I had enough and the pain in my stomach was back in full force. Quietly I asked my boss to take me to the ER. This time I had a different doctor. I was yelled at from the start and treated much more differently. The doctor and nurse refused to give me anything for pain. Even though my blood pressure was very high. I started throwing up in the ER. Finally after crying and begging I was given a little bit of medicine for pain relief. During this time the doctor was reading my file and test results from a few days ago. She made a new digonosis then yelled at me for not giving the medication enough time to work? And said I was lying when my husband told her I was unable to keep any of down. Then without directly telling me she called me a drug seeker and said hospital policy does not allow the ER to use any opioids. When I told her I was not looking for that but help on stopping the nausea and vomiting she flat out refused. I asked for a different doctor I was refused and then kicked out of the ER. To say the least the expirance was horrible and embarrassing on top of maddening. I had to wait another 6 day till I saw my GP as he was on vacation (he does not have a college or nurse practitioner when he is out). He saw me and saw how very ill I was and sent me to the ER in the larger city close by. In the end it was a mystery on the cause of my stomach illness and stomach pain.

The next time I went to the ER was months later, about 6 months. I was having a horrible flare with my TN, the pain had changed and was much more aggressive. My husband found in the garage cry and throwing up from pain, I had been in there all night. He quickly sent the kids over to neighbores house and then rushed me to the ER. My blood presure was very high and I had a high fever as well. I was as white as a sheet and vomiting. We waited an hour or two before we were taken back into the ER. At this point I was moaning, shaking from pain, and not really there. Again my old man began to tell the doctor on what I had and how he found me. When asked what my pain level was I held up all ten fingers. The nurse and the doctor left. My prescription history was looked at and then the doctor came back. He then explained he was a heart surgeon. That I had a prescribtion of hydromorphine filled recently and that should be enough. That we also had not contacted my GP about going to the ER, and that I should be seeing a pain doctor. Then we were told there was enough they could do for me. My husband then begged stating he did not mean to break any rules, it was 5 am when we left for the ER, that his only concern was to get me to rest, and that we were not looking for opioids but anything to relive the pain, and get me to rest. This is when the doctor stated I’m a heart surgeon she’s not my responsibility. Finally after another pled from my husband they gave me a non-norcotic to get me to sleep. After the shot I heard the nurse say to the doctor she had never heard of th. the doctors reply floored me and of course I was in too much pain to say anything. The doctors reply to the nurse whom did not know what tn was, is that it is a condition where the mind thinks its in pain but really there is no pain and no cause for the pain. The next thing I know was I had some ER staff member telling me I was a drug addict and needed to get treatment for it. The next day my husband told me the whole deal was terrible. It was suggested I was a drug seeker and addict, that I did something terribly wrong and was a criminal. I was not at all treated as I am person was a disease that is painful,but was suggested that I was faking it. Another thing that upset my husband was the doctor told him that I would not die from my “pain”, that it was not life threating, and it is not the ER responsibility to reinvent the wheel everytime I had out of control pain. To say the least this expirance was unpleasant would be an understatement.

You think that my own mistreatment would have ended there, but I’m sorry to say it has gone further. I don’t remember exactly what the actual cause or incident caused it. Another month or it might have even been a few weeks as the last horrible ER visit. Any how, my sweet husband had to speak with my GP and his staff. A couple of the nurses were treating me as if I was a drug seeker and abuser. The GP had to explain to his staff all of them that I was neither of these but in fact a patient with a very painful condition and that I was in more pain the the majority of all of the patients he sees. After this I and my husband were treated dignity and compassion. It was a little bitter swet to me. On the one side it was glreat to be treated as a person again, but on the other hand it was frustrating that my husband had to stand up for me on this.

Another two months from this I had a very awful time with another nurse. Well really she was the doctors assistant for a different doctor whom I have treatment from for TN. Again I was treated like a drug seeker and abuser. Of course it was when I needed help with getting my pain in control. It was very frustrating not being heard all the way. First i had a very horrible appointment with the physician’ s assistan, she yelled at when that she would not increase my opioid medication; I did not ask her this but rather help with getting my pain levels more in control after having some dental work done that had ended up aggravating my TN. Instead she yelled at me, warned me about the dangers of opioids, and indirectly accused me of being a drug addict and drug seeker. I left very upset and emotional about not being able to get the help I so desperately needed at the time. After another two days the pain was out of control again. I was unable to talk and my sweet husband ended up having to call and ask what to do. Somehow he talked the same nurse into communicating with me threw email to try and figure out how to get the pain levels to tolerable. However instead of emailing me back she called my cell phone which I was unable to answer. This time this nurse made the mistake of leaving her opinions and treatment on my voice mail. Now I was even more upset and emotional and scared i would be stuck in this horrible pain. Again I had to go to that doctor and point out my mistreatment and why both my husband and I were upset. My doctor was shocked to say the least and apologized to both my husband and I for his nurse’s behavior and treatment towards me. To be perfectly honest it was a bit gratifying to get the nurse in trouble. What was worse, was this was my pain doctor and not my regular GP. In the end I hoped it stopped her from treating other patients like drug seekers and drug jockeys.

So yes, I know all too well how we pain patients can be treated like. It is incredible and freighting at times. Then again there also a flip coin to everything.

That flip side of the coin being the abuse of opioid medication. The news media making splashy headlines and stories of the abuse; because let’s face it the public would rather see how one or a few more people abuse opioids and how far they will take that abuse. Hearing about how one women or man(or whom ever will take their chances and abuse medications such as Vicodin, OxyContin, Oxycoden, Hydromorphin, Morphine, or any other opioids out there. The individuals who abuse this class of medication have issued troubled to the chronic pain community with their selfishness. Groups that are pressuring the FDA to change labeling to use of opioids have sprung up. The DEA and it eat against drugs has now turned onto doctors in its search to end pill mills and to protect public against the abuse of opioids. The results have been very harsh against the pain community, with doctors afraid to either prescribe opioids or in some cases to accept chronic pain patients at all into the practice. It even goes to pharmacies resisting to fill legitimate prescriptions of opioids to patients of chronic pain. It is easy to see and understand why so many doctors are reluctant to prescribe these drugs out when you look at how zealous the DEA has been on finding, shutting down, and locking up the pill mill doctors. Even emergency rooms are changing their polices on how the deal with narcotics, however it has seemed more and more this means acussing patients of being drug abusers and drug seekers. Patients that doctor shop as well have made an impact on the new war against norcotics. Some states have even start changing their laws in response of the witch hunt against the abuse of norcotics. What really has happened is the pain community feels under attack, this includes both doctors and patients alike. Really the whole situation stinks for everyone.

Sorry this was so long, but bless you if you stuck it out and read the whole thing. By the way i have insurance this discrimation does not matter if youre insured or uninsured, at least that is what im finding. Hope you have great day the is pain free day.

I,m so sorry you had to go through all that bad treatment. If they could just feel the pain we put up with for 5 min it would bring most people to there knees!!! Hope your doing better.

This topic just reiterates the need there is for more awareness of Trigeminal Neuralgia and the severity of the pain. We all must remain steadfast in our self advocacy for pain management as well as raising awareness one person at a time.

I too have endured doctors thinking I was “depressed” and/or making things up , it’s humiliating and frustrating.

I’m very lucky to have a good team of doctors now, whom I don’t take for granted as a result of past experiences.

((( hugs ))) Mimi xx

i do know just how you feel i had to make two trips to the er this past week the last yesterday all i asked for was 4 mgs of klonapin and they acterd like i was a junkie.The bp has jumped and that throughs me all the time.The one doc that finally came and by then I was crying and thought it was a wasted trip but he did understand and gave me what I asked for had it did help now tonight is another story but I can deal with it.people are talking about pain mangagement here invade y'all don't. find it elsewhere but people have asked about going on suxoboxon for pain control and I can only give my own opioion I used to help get off opiods and that it did but that was it then when you try to get drugs like opiods or even looping you are considered adruggie so please do your rearch 1st HUGS TO ALL HAVE THE BEST PAIN FREE DAY POSSIBLE MY PRAYERS ARE WITH YOU ALL, DAWNY

I feel the same way.

I have heard this said many, times throughout this site but unless a Dr. can see or run a test to find the problem, to most of them there isn't one.The Dr. I thought I was going to stay with, my old gp left his practice so I thought I would just stay with the Dr. that put me on suoboxon and helped me get off pain medicine. He did put me on lyrica but when I asked for amptriptaline he said he couldn't do that .So I found a new gp he did put me on amp.but said 150 Mg was as high as we could go and then showed me on his computer,then I didn't know what to do so I asked for topamax. I had found my journals from the last 22yrs. of this terrible nightmare.One of them said topamax had helped for awhile. No luck this time it didn't help at all sou had nothing so I ended up in the er. So 4 hrs. later I was home with 4 Mg of klonapin in and a break from this terrible pain for about 8 hrs. Klonapin does help me for awhile as long as I use them for the real bad pain or when I just cannot stand it another min. it's pretty bad now and all day yesterday and we are starting another day off the same. I have a Dr. app. tomorrow I do not like to go to the er, they are just too slow, if they really wanted to they could have me in and out in 10 mins. ( ha) wishing all pain free day I am going to try here in about a hour and a half to get into someone. HUGS

Hi Kristi,

The particular drug you are speaking of is very strong opiod, that is hydromorphine. This is considered a second line or third line of denfence medication. I suggest you look up the medications on the face pain info tab (on the top of your screen) these will be considered first and have a higher chance of helping with the pain with the added bonus of not having to consider long term opioid therapy. hydromorphine is a medication that you will most likely need to see a pain managment doctor most GP or neurologist are not going to want to prescrib this strong of an opioid medication. You may have to jump through some hoop once and if you are prescribed hydromorphine. It also might take a bit and having the feeling of being a ginue pig before you are able to find the cocktail of medication that helps. You can print out the medication list and take it with you to your next doctor appointment and see if tegortol or one of the other medication will help. Each of the medication will need to take some time before they work their magic of removing the pain.

With that said when you are in need of pain break because your pain is through the roof, and the roof of the space station; the ER should be more trying to give relief from the pain. Being given the you are a drug seeker garbage from the ER really needs to stop for the chronic pain community.

I hope you are feeling better today and feeling pain free. Take care and have a great day that is pain free.



Kristi said:

I am learning what you are saying is comletely true. So far no one is giving me any medication that helps, I got advil, toradol, and the high dose of naproxen and it ends there. I feel like I swallowed a tic tac cuz that's how much those drugs help. I asked for hydromorphine and no one will give it to me. The dentist and doctors are looking at me like I am making it up. I had surgery 2 years ago and have old hydromorphine pills ( probably expired ) and I took them. If you can have an organ pulled out and not need to take the pills and you need it for this condition it just shows the severity.

I feel the same way...I can't help it that nothing seems to work...I don't want to rely on pain pills, but what else can I do? Everytime I call for a refill, they have to remind me that I just had those fill x days ago...really???? I know how long it's been, you don't have to make me feel like I am a pill head...