Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Question about narcotic efficacy in AS

I would suggest that you write up all the quotes from the meeting with the doctor and print them out along side ample evidence that the doctor is a quack such as can be found in any number of "peer reviewed papers" or studies and Mail them to the doctor and whichever governing board she is under.

I'm lucky in that when a doctor says something like that to me , I immediately and reflexively call out "[*bleep*]". It startles doctors coming from a little grey haired woman, I must say.

Unfortunately, we, as patients, have to be far more informed than those to whom we go for assistance.

Well I had my little grey haired mother at my appointment, who didn't exactly blurt out expletives, but she did have some choice words. Nothing rude, just calling my doctor on the "AS doesn't cause real pain" type of statements. This whole situation just sucks - I really need someone to work with me. Not just pull me off everything entirely and leave me with no options. I mean I agree that I shouldn't be on painkillers. No one should, in a perfect world. But there has to be some kind of quality of life too. Some kind of way to cope. Life without pain control for me is just… ya I don't even want to think about it.

I actually brought my doctor a select few very good articles from high impact journals that I thought she might find helpful. She refused to read any on pain stating "I read ALL kinds of papers all the time". She copied one article on treating nausea, but that was it. I keep trying to do the right thing, trying to be helpful, always trying to be polite despite her rude digs and her yelling at me. I need to find a way to work with her because it doesn't appear that getting a new doctor here is possible.

I don't think it is rude to call "bullsh@#" when that is what they are saying.

I don't suggest trying to get them to read articles-never going to happen. That is why I suggest doing a quick cliff notes version of what boneheaded things she said with references contradicting her which she can look up,on her own time, if she wants. at least 5 per bone headed comment.

Remember PubMed is your friend

You can also record your time with the doctor (ask first) and then replay her rude or unsound medical comments later.

I understand how helpless you can feel when dealing with a doctor who doesn't listen. I wasn't diagnosed until I was 46 and after dealing with Army doctors who ignored all signs until I had to be medically retired-then I went to a civilian Rhuemy and was instantly diagnosed with all the previous imaging and symptoms being noted for years.

A simple power equalizer in the relationship is to insist that all members of the doctor's office - from the receptionist to the doctor - call you by your title and last name be it Mr., Mrs., Ms.,Sgt., or whatever title you can claim but Never by your first name.

Doctors go by a title, their underlings go by their first name. If you allow any of them to call you by your first name, you are psychologically speaking, at the same level as the underlings and not the one in charge even if the doctor calls you by your title and last name if the underlings don't you are still equated as subservient to the doctor. It is amazing how much such a simple trick helps to change things.

I think I was one of those geeks cramming for tests all the time.

Thinking back to my friends who went on to med school… honestly I think most of them were (thankfully) genuinely interested in helping people, but unfortunately there were a couple of bad eggs who seemed like they were just in it for the wrong reasons. Chalk it up to human nature? Probably just a couple of bad ones (or even just a couple of bad moments) who make a bad name. Just like it only takes a couple of bad patients to misuse opioids, and then suddenly doctors refuse to prescribe any opioids even to patients with a legitimate need.

I honestly don't think my doc is looking for status (she's in the wrong town for that) and I think she's probably very well educated, but I think she just needs a little help on human interaction. I probably do too in all fairness. (And maybe she needs a refresher on AS?) I'm not sure if the province/country is cracking down on use of opioids here as she says, but it shouldn't leave patients with a legitimate need in severe pain. There has to be some discretion there.

If that in fact IS the case on opioid prescribing here, I guess I really wish she would have said something like, "I hear what you're saying and I understand that you're frustrated that I can't prescribe the dose that you were on before that controlled your pain. I DO believe that you have significant pain and your need for pain reduction is legitimate. But by law, I can't prescribe to you what you're asking for. You have a right to be angry at these changes implemented by the (government, board, whatever), and I am too. I will work with you to find any and all alternatives to opioids to help you get your pain to a manageable level that is acceptable to you, and I am open to any reasonable ideas that you want to try."

Something like that would have been easier to hear today I guess. When I was working with patients, I never in a million would have talked down to them the way she talked to me in my last couple of appointments, no matter how bad the job got.

Ha I can't claim any title! "Miss" isn't really a power title, is it. I had a psych prof who once said that her world changed dramatically once she had "doctor" in front of her name. I probably would have had my PhD by now if it weren't for my health problems. Keep hoping I'll get to go back and finish one day. Maybe I'll specialize in pain management.

But yes, you're right, recording would be great because she talks SO fast it makes my head spin. I really wish I could record the conversations but I know she'd never agree to it and just asking would be a pretty bad idea. Maybe if I catch her in a good mood one day, I'll ask. Thanks for the tip.

Miss is a VERY strong title. If you insist upon it. Titles are just games but the insistence of its usage is power. Because it is really an insistence of the last name.
A person who goes by geoff isn't treated with as much respect as a "doctor johnson"
Or officer jenkins has some kind of weird authority that floyd doesn't -even though it is the same person.
Do you think that people who work for bill gates call him bill or mr. gates? If they work for hillary clinton is it hill or mrs clinton?
That tells you who has the power in the situation-
title and last name regardless of what the title is--- psych 101

Regarding recording, it may not be required to get her permission based upon the laws of your province. However, you can always say that you would forget or that if you try to take written notes while she is talking you would miss half of what she says. Then there is the possibility of misspelling a medical word and when you got home that could lead to some problems since so many medical words sound alike or are spelt alike.

Hi Megan. I haven't had any problems getting Dilaudid, either down in the lower mainland (VGH's ER and RGH's ER) or up here on the coast (KGH). My doctors have had no problem prescribing anything I've asked for, including MM. Any chance you could see a doctor in Terrace, Kitimat or Prince Rupert?

Hi Meggie,

Opiates have been all over the news this past summer, with articles such as: CTV Article in July

If you google 'Health Canada and opiates' several articles like this come up. I first saw it mentioned in a CBC article a couple of months ago. Your doctor may be reactionary when it comes to this because Health Canada is making waves about it.

She doesn't sound like she listens, frankly. Sadly, I know you are limited by location and ability to travel, but perhaps if you can try one of the others just suggested it might be helpful.

Also, 'Miss' is a very powerful title if you insist on it. 'Miss Smith' will get more respect than 'Jane'.

Also, I don't think there's a law against recording doctors' appointments. You might check into it with the BC Medical Association. That way, if they say it's all right and she makes an issue, tell her that it is your right as a patient to do so so that you remember her advice properly. I would contact the BC Medical Association and the BC College of Physicians and Surgeons to find out your rights in this.

And keep taking your mother with you. You need someone to advocate for you when you don't feel up to it.

Right. Got to get at my job.

Love and warm hugs,

Hi Megan,
I'm not a northern colonial but instead a southern colonial from Queensland Australia. I live in a regional area with a small regional hospital. You would expect me to be facing similar problems with doctors but mine are brilliant. They ,my gp and nephrologist, have literally pushed me onto opiates. I was reluctant but both said you cannot and should not have to put up with that much pain. It will kill you. I must admit my spondylitis combined with a bit of osteoporosis from steroids plus psoriatic arthritis were giving me a bad time. Now that I have started targin I have gradually built up to a dose of 30 mg oxy/15 naloxone morning and night, Opiate induced constipation has been hell . The naloxone is upposed to stop it but it does not . It certainly stops me getting fuzzy or high and I believe it acts like ldn and takes the burn out of my neuropathy but the constipation has been hell. I have settled a bit this week by taking two dulcolax and three coloxyl with each targin dose I drink a lot of water and the occasional sachet of movicol. At the moment I am not at panic stations and seem to be winning the battle. Good luck with your battle ,I will settle for the 30% tho it seems more like 80% to me.. Ron.

Megan, so sorry to hear about your frustrating visit with that frustrating doctor.

Everyone knows that when spondyloarthropathies inflame the spine, that bone spurs and other degenerative changes can and do occur and then can press on....the nerves...causing.....nerve pain, nerve compression, etc......

but too, I started having problems in 1998, saw so many PTs, physiatrists, orthopedists, rheumies, etc....and they kept calling my pain "localized myofacial pain syndrome".....it took til 2010, 2011 when my chiro, very politely said, "I'm really sorry, but I'm pretty confident that all your symptoms in your upper back, shoulders, neck, face, head) are due to nerve compression in your cervical spine. He had me go back to a physiatrist I thought I could rely on; she was not very nice to me, which surprised me, as in the past I thought we had a good working relationship. So I ran from there and went to the interventionalist I see now. He concurred with my chiro and has given me cortisone injections in my cervical facet joints; amazed how well they worked, especially the ones highest up (c2-c3 and c3-c4). I still can't sit in most chairs, most cars, and travel is really difficult. But am back to little pain in the neck and much less muscle spasms in my upper back, neck, etc if I only sit in a few select chairs and my old old car with a car seat I can tolerate.

Can spondy cause nerve pain? You're #$#% straight it can.

Too, when I told the hand orthopedic surgeon that the pain in my wrists feels more "nervy" than when I had tendonitis there, and that ice wasn't helping like it did for the tendonitis, he believed I could have something (inflammation or cyst pressing on the nerves).

Too, when I had very bad hamstring enthesitis where they attach behind the knees, as scar tissue formed, sciatica in my lower legs (as the sciatic nerve runs through there).

Thus anyone who doesn't understand how we can have nerve pain is an #$#$%.


I so wish you could have another doctor. I so remember all those other doctors I had in the past.