Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Well, He Called Me Back

Well, I called my doctor yesterday to verify something about the Naproxen. I had told him it helps on a certain level pain, but when it's really bad it doesn't seem to work at all (like when I walk around Old Town and my ankles hurt, hips hurt, lower back hurts.)

So he called me today about an hour ago, and I told him that I thought Naproxen was suppose to build up in my system in order to be effective so I was confused as to why he said "take as needed." He said that since I had no signs of inflammation, I could take the Naproxen as needed. He also said to me "I told you that. I told you it was mechanical." With a certain tone (stern) to his voice that made me want to say to him "I realize what you told me in your office, I just didn't understand how Naproxen works." but I didn't because it wasn't worth it.

He said to take the Naproxen up to twice a day as needed. For those times when the Naproxen doesn't seem to help much, he told me I could take up to 1000 mg of Tylenol 3-4 for times a day. So now I have one Naproxen in my system that I took around 2pm and one 500 mg Tylenol. My ankles now do not hurt and my back feels better.

Does this sound right to you all (what he told me to take and all?) I'm just wondering how long I will have to keep popping pills like this. I mean, I could keep doing the exercises, but with my body it could take months to figure out if the exercises are really helping. Any suggestions? Today I didn't really do much except drive around and do a few errands and my body feels like I spent the entire day museum-hopping -- hurting ankles, sore lower back, hurting upper back. But this all tells me at least one thing: this pain and stuff is not just because of the way I sit at my desk at work. I've been out of the office this week on vacation so so much for my supervisor's theory.

I guess I should be more thankful that I am in less pain right now.

Jen

Hi, Jen:

Sometimes relief now is a good thing, but there are many nows that turn into years while the doctors still do not know the root cause of AS.

I wish I had not taken any NSAID, as I am sure that the brief amount of time I enjoyed pain relief has been overtaken by the actual pain, long-term, that resulted from accelerating and complicating my condition by taking the NSAIDs.

There is nothing certain that this will be your own experience, but I do urge caution and also that you read this brief entry: http://www.mercola.com/1997/archive/nsaids2.htm.

Old Town San Diego is a neat place...when it is not too crowded! (not sure that that is where you were).

Best Regards,
John

Hi John,

No, Old Town Alexandria, VA! :)

On my last appointment the doctor told me it was all muscular.

We'll see. Maybe he's right.

Jen

Hi Jen, Okay... I have a lot of opinions for you here, so feel free to take what you like or not as you wish!

First off, I would hesitate to believe the docs accessment outright that you don't have some measure of inflammation at play. The 'signs' are not always so clear cut, and the fact Naproxen is starting to provide you a measure of relief is a good indicator of inflammation. This is one of the reasons they test an nsaid (non-steroidal anti-inflammatory drug) in the first place. It's a like diagnostic tool, since if it doesn't help in the short term then inflammation may be ruled out.

In an earlier post you said, "my ankles were hurting. Then it spread to my knees, hips and lower back. The Naproxen didn't touch any of these things." This is a good example of how communication with your doc is so important. I am only guessing, but that likely steered him in the direction of mechanical damage as the root of your pain.

My boyfriend has mechanical damage to a couple of disks and is prescribed an nsaid on a 'take as needed' basis too. I think(?) that inflammation from mechanical damage causes sporadic inflammation, unlike AS which is more constant. The doc was also looking for such indicators in your blood work (which is not always perfectly reliable.)

As you already know, xrays often fail to see anything early on, so that could be a false negative. Please try not to doubt yourself - it sounds obvious that something out of the ordinary is going on! AND your mom AND a cousin have AS? Does your doctor know this? Mechanical damage sounds pretty unlikely!

I don't know how helpful this will be to you, but I can only suggest that you start a basic journal to record your activity level / pain level / and meds taken on a daily basis. The more you understand of your own situation and consider how best to describe it all to your doc, could go a long way towards helping him help you!

If you haven't already checked this out, KA has a new section under FAQ, What to Ask Your Doc - Maximizing your physician contact, which may be more helpful! Personally, I wouldn't rule out this Rheumy just yet (tho his manners could use some improvement ).

The last thing I wanted to say is that I have never heard of someone pulling muscles in their neck while sleeping! Stick with the exercise sheet for AS Jen... just my opinion.

And hang in there!

mig

Hi Mig,

Yes, the doctor knows of my family history. In fact, my mother is a patient of his. Go figure. And I told him about my ankles, hips and lower back after he looked at my x-rays. He made his diagnosis before I said anything. He wouldn't let me go over my list until he had done his thing. So what I said to him did not influence his diagnosis.

As for spraining my neck -- the PT thought that with me being already tight in the neck and shoulders, he thought that I got stuck in one position a long time while I was sleeping and did a slow sprain on the neck muscles.

I have not taken anything today. I have felt pretty good (except for the moring), but I have this sneaking suspicion that I should take something before I go to bed. And if I want to see what's going on then perhaps I need to continue taking the Naproxen twice a day which I have been doing off and on this week. (I've just been too angry and whatever.) So I guess I better make up my mind what I'm going to do.

As for the Naproxen starting to work which would indicate some inflammation, he seems (then) to be ignoring that.

As for getting him to listen to me and to change his mind if it comes to that, I really don't know if that's possible with this guy.

Thank you for your advice. You are not the only one to suggest the journal. I'm going to go update it now.

Jen

Hi again Jen!

I'm glad to hear you've already started a journal. I think you'll be surprized at how useful it can really be. Somehow, I always think I'll remember this pain or that, but all these details just end up melding together and getting mixed up, until at some point I am fairly sure I sound completely confused!

If you decide to try Naproxen on a consistent basis for a period, then your notes may be even more useful. And since you suspect this doc's listening skills may be challenged... clarity could be key!

Best of luck!

mig