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

Hey Sue, thanks for your reply.

It's not that my doc doesn't think AS can't cause nerve pain. She thinks that AS doesn't cause pain, period. She also has this weird belief that each person can only have one issue, that multiple comorbidities aren't a possibility. So right now, I have three concerns: AS, cyclic vomiting, and small fiber neuropathy (unrelated to AS). But rather than see my disorders as separate disorders, she is on a mission to try to find ONE disorder to account for all my symptoms. That's why she's "undiagnosed" me with AS, because AS doesn't cause vomiting. There is no way you can reason with her. I have 11 specialists that she won't believe either. It's becoming a pretty big problem.

Forgot to tell you… she keeps saying "AS doesn't cause pain" over and over again in every appointment. And I keep trying to tell her it does. Last time she kept telling me that she has cancer patients on less pain meds than me so there must be something that I'm doing wrong. Now she has me writing down everything I do, minute by minute, so she can figure out "what (I'm) doing wrong". I'm at a loss, I'm in pain, and I just have no idea what to do to convince her that my pain is REAL and that I'm not crazy or drug seeking!

Hi Ron, you sound like you have similar problems to me. I too deal with osteopenia, neuropathy, and AS. Glad to hear your doctors are believing you!

Yes, unfortunately motility issues are a real concern for opioid users. Lots of fiber in the diet, lots of water, and laxatives are the only way to go.

On a super good day, my meds will give me about 80% relief from neuropathic pain too. Not as much relief from AS pain, but depends on what kind of pain I'm having that day.

My doctor is convinced that no matter what type of pain, severity, duration, type of opioid, or dose of opioid, the maximum amount of relief a person can get is 30%. You cannot convince her otherwise. I have no idea where she got that statistic. My big BIG problem is that I told her I get pain relief greater than 30%. HUGE mistake me saying that. Because I said that, she won't believe me, and said that either I'm lying and drug seeking OR the pain reduction is clearly all in my head. Either way, she said it's reason to take me off opioids.

So soon, I'm afraid I will run out of my pain meds and be left with tylenol.

Had I known she was going to use my words against me, I never would have told her I get adequate relief from using morphine.

Hey Kat,
I just know if I asked my doc if I could record my appointments, she would freak out at me. She'd lose it. And she already yells at me for my whole appointment as it is and threatens to do all kinds of things. She threatened to pull me off all my meds if she found out I was trying to go back to work. It's just become a horrible toxic relationship, her threatening to pull me off my meds if I do anything that she doesn't like.

Hi Shyguy,
Where is KGH? Unfortunately I signed one of those opioid contracts with my doctor saying that I couldn't go to any other doctor or ER for pain meds. I had to sign it or she would refuse to prescribe my meds awhile ago. So, it's not like I really had a choice in the matter.

I don't think I'd try to see a doctor way, way up north - it's about a 12 or 14 hour drive I think for me (when roads are good!). And there is such a doctor shortage in BC right now that doctors are obligated to take patients from their own communities (who need doctors) before they take patients from other communities who already have doctors (technically). I've been told no one would take me anyway, because I'm on opioids and a lot of docs just won't rx them. I once tried to go to one doctor here in town, but he had a huge application process, and apparently I didn't "pass" so he wouldn't' accept me as a patient. I guess this is what our system has become.

I'm still trying to find a way to get a new doctor here. I'm a bit worried that I'll end up with one even worse than the one I have.

The only other option I can think of is to go to a private clinic in Vancouver, but that's a 10 hr drive from here too, and I have no idea how I'd be able to afford to do that anyway.

Ron- I'm curious why you would use that med that blocks the high? Isn't that apart of what helps people function? It seems like it would be cutting the benefits in half with all the same bone-inflaming side effects.

I personally want to avoid this route at all costs but it just seems like that med would eliminate the piece of mind and some of the energy benefits from this class of medicines.

Maybe I'm missing something though?

And for constipation wouldn't a better option be relistor?

though it sounds like nothing will help in dealing with that doctor (sounds like the rheumy i had before I found the rheumy that dx'ed me), maybe this will help:

http://elleandtheautognome.wordpress.com/2014/02/15/ankylosing-spondylitis-on-the-mcgill-pain-scale/

AS not only causes pain, but more pain than non-terminal cancer.

As for "you can't have more than one disease", then I guess I don't have a spondyloarthropathy and diabetes...that's good to know....didn't want them both anyway!

we're here for you, just wish there was more we could do....

Meggie,

I don't know what I would do if I were in your position. Frankly, I'd be hard-pressed not to punch her in the face and then tell her that it couldn't hurt that much. But that's not on and you'd get in trouble.

There must be a process through the medical association that you can instigate to have a review done. Any doctor who thinks that a person can only have one problem doesn't know anything about autoimmune diseases in general ... or life, really. I try not to doctor bash as that doesn't solve anything, but this doctor is putting me to the test.

I am so very sorry you have to deal with a cow like this (and 'cow' is not the word I wanted to use). I don't know how to advise you, or even if anything we can say would help beyond the value of letting you know you aren't going out of your mind and you have every right to be upset. All I can think is I want to cocoon you in cotton and take it all away so you can have a day without the pain and stress of dealing with this.

Just keep taking your mother and take notes. Copious notes. It is your right as a patient, Meggie, even if you don't think she'd allow you to record them on a recording device. You have the right to make notes and if you can get down word for word her 'medical' opinions on AS and pain, you have ammo to take to a review board.

I'm sending so much white light and love your way.

Love and warm hugs,

Wow. Sorry you have to go through this! It really doesn't sound like you are going to be able to change her mind, and the harder you try, the harder she exerts her authority. I wouldn't want any care from a person like that either!!

Is there anyway you can temporarily register your address to a new place, a nearby town, say you "moved" there, get a PO Box, and then seek a new doctor. Maybe use the address of a friend or relative?

Or maybe get established with the pain doctor in Vancouver, establish a treatment plan, then transfer it to a nearby doctor shortly after. I think a pain doctor is the way to go in this situation, if you want to take pain meds, as it's their job to help you overcome the pain. This disease can be uber painful, and I believe the pain doctors are usually more aware of that and accommodating.

It seems like "moving on" is the easiest, and least painful option. I have "moved on" from many doctors myself! And I am currently really happy with the people I do see, when I need to.

I hope you find relief with a new doctor and meds soon!!!

We are cheering for you!