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Monday, March 25, 2013


As you may recall I received this reply to my post about doctors, patients and money from someone who self-described as an anaesthesiologist and pain specialist:
"...I get lied to and BS'd everyday by people trying to tell how to do my job, which usually involves them telling me that the only thing that will work in Oxycodone, not PT, CBT, BF, TENS, Diet, Sleep modification, Smoking Cessation, daily exercise, leaving an abusive spouse, stopping a job that is eating up their mind, soul and body, etc..."

I wrote in response a post about the need for equality and partnership with the doctor,  as opposed to being adversaries.

As a chronic pain patient, what is our obligation?  Is it different then the relationship between cancer patient and oncologist, endocrinologist and diabetic, general practitioner and someone with a cold?

To some degree I think the answer is "Yes." 

In the other examples the doctor tends to have visible, lab based proof of the patients' problem and condition.  He needs to rely on a cancer patient for the truth about their level of pain, but in that situation the truth is, by all accounts I know, accepted as reality.  Cancer and pain is a known combination. 

We, on the other hand, have to be believed to be treated. 

My disorder, trigeminal neuralgia, used to be very specific with few, if any, parameters outside of the textbook definition and description.  (They have extended the signs and symptoms so it is now no longer an automatically immediately identificable disorder.)

CRPS (chronic regional pain syndrome) does have visible effects.  Fibromyalgia, soft tissue injuries , other invisible treatment resistant pain often does not.  Treatment is reliant upon trust.

That trust is often broken when a patient comes in and says "I need oxycodone (or vicodin, or codeine, or other opiate)."  It  can also be breached when the doctor says, "Let's try PT (or another treatment) and the response is "I did that.  Didn't work.  I won't try it again."

The truth is some patients are liars, BS'ers, untrustworthy as angry doctor said.  Even for those who are not it can be hard to be believed  if we are demanding.  To go again to the cancer analogy, it is, I am going to make an assumption here, the rare person who says, I need tomaxacin (or other specific chemo drug, or drug.)." 

How do we fix this? 

Instead of asserting I need, I want, we need to work together.

"I have been on vicodin and it has helped me greatly.  I would like to continue with that drug.  What is your position on it?"  "I have tried PT, etc and have not had a benefit from it.  Is there a reason you believe it now can help me?"  Make it a conversation, not either side bullying the other.  They may have forgotten, or not know, what has been tried, they may have another therapist who works in a different way, the name of the treatment sounds the same but it is not, and so on.  They may have opiod policies with which you disagree.  If you decide to stay it makes no sense to ask for what will not be given/prescribed. 

"How dare he not give me that!"  "I know what I need and he has no right not to give it to me."  I have heard people say, "I am going to sue because he did not give me what I said I needed."

There is sometimes a belief that a physician must give us what we want, no matter what.

Angry doctor is sad.  I feel sorry for him.  He soes sound, as one commenter wrote, 'burned out'.

Nevertheless, his unwritten point can be valid.  If we are demanding we may well seem like liars and BS'ers.  We both, doctor and patient, have a responsibility to bring common sense and conversation into the examining room. 

And leave the demands and tantrums outside.

What do you think?


  1. Totally agree Carol. Politeness works both ways. And building a relationship with a doctor is essential. I don't think demands for anything anywhere ever really work, but especially not in the line of patient to doctor.
    Sometimes our meds don't work, sometimes the physio doesn't work, but to be able to calmy talk about it, and ask what they think the next best option is can go a long way. If they think you respect their opinion, I believe that they will also respect your's, as the patient.
    Great post,

  2. This is something I'm only beginning to deal with as I struggle to explain my pain (as, after all, everyone has a different tolerance) to request help, but also doing my own research as the truth is that not every doctor is an expert at every disability/illness (not to say they don't know what they're talking about, just that they probably haven't put the same amount of time into researching my disability as I have). I don't want to claim to know more about medications than they do, because I don't, but I also don't want to simply accept that I simply have to live with the pain. It's a fine line to tread.

    Reading this post has reminded me of an open letter I once read online from the point of view of a Doctor dealing with people with chronic conditions and the point made I remember most is doctors often view their job as solving the issue and fixing it, and with people like us this doesn't happen - this can lead to frustration on their part which isn't necessarily aimed at the patient.

  3. Hi Tamara,
    You make very good points. It is important to remember that not all docs will be familiar and to give them the benefit of hope that they want to learn about the specific condition we are bringing to them.
    They say those who go into surgery do so because they want to get on and fix the problem, those who choose other specialties usually have a higher frustration and patience level (hopefully).
    Your doc(s) are lucky to have you as a patient, understanding this from their point of view.

  4. I have had Trigeminal Neuralgia for 34 years now. I also am .01 of the 1% of people that have it. It took 15 years for anyone to figure out what I had and it was my dentist. I get the strike in the face, but then it goes into a full blown headache that is bigger than cluster headaches. My teeth, ears, eye, cheek and the broken nerve in my nose stay with me in pain along with the headaches which can last days to weeks
    That first 15 years I had a doctor who told me I was crazy. I went through a lot, kept working while going through this pain.
    With Neurology for 3 years I finally wrote down 40 medications that I could remember and showed it to him. He was appalled that he had given me that many medications. He sent me to Neural-surgeon. One look at my paperwork ands he said there are no surgeries that would work for me. He referred over to Pain Management.
    I was with for 11 years. They tried everything they had. At the end of the 11 years my doctor told me: "Debi we have only one last thing and if this doesn't work there is nothing out there for you. It was Methadone and it help better than any other medication. 6 years and it is still helping me.
    I have neuralogical damage throughout my body including Fibrmyalgia due to getting Bacterial Spinal meningitis when I was 17.
    I have been through a lot in my life and I am going to be 62 in July. My attitude is to be happy even when in pain. People who have not gone through chronic pain just do not get it and I understand that. Always be nice when you get critical remarks or remarks that they think are funny Like I said they do not get it and that is okay. People say to me "Well, you look fine". My response to them is "Thank you,I do my best to look fine".
    Regarding all the doctors I worked with not against them. Honey goes a long way!!!!!

  5. Hi. Debi, you sure have been through the wringer. It looks like you have a great attitude and that sure does go along way in living with the pain as well as the doubters and disbelievers.