Wednesday, September 17, 2008

Spondylitis or Not?

I have an elevated ESR (sed) rate and negative rheumatoid factor, which continues to confirm I have spondylitis or I don't have spondylitis. Now the rheumatologist is backing out on the spondylitis diagnosis and suggesting maybe I just have osteoarthritis, even though my sed rate is much higher than it was. I'm confused and frankly, depressed. I don't think seeing doctors is good for me.

No Remicade for me, no Enbrel for me despite pain level. The new NSAID is working and helping some, thank goodness. I realized I actually do have a lot of morning stiffness now that I don't have much morning stiffness. I don't know that the rheumatologist believes me. I don't need him to believe me. I just want him to treat me appropriately. Whichever the diagnosis, the treatment is the same. I don’t expect that any doctor would take everything I say as absolute—that wouldn’t be objective science; I also question what they say—it’s only fair since when I see someone we both bring our biases to the table. What I would like to see is a physician who can entertain the idea that I might be right as much as the idea that I might be wrong (about pain level, etc.).

I really am depressed now, and it's from the doctor visit more than the level of disability. He held Remicade out like a carrot and when the lab results came back as he expected, no carrot? It's not great for the immune system, but if his reasoning is that's what he's concerned about, he's not told me.

He wanted me to ask the surgeon about any evidence of ankylosing spondylitis/joint inflammation during surgery and about the bone quality. The spine surgeon said no evidence of ankylosing spondylitis. But I never thought I had it in my neck! In my low back, my SI joints, my knee. I had a disc herniation in my neck along with the osteoporotic issues.

I feel depressed, I feel unbelieved and unbelievable.

I know that pain is subjective and not truly quantifiable and that one person’s severe is not another person’s severe--but I had natural childbirths. I can take pain—I engage in it like a Zen practice--thinking mind over matter, I can deal with this, I can deal with this, a few more minutes until I can lie down, concentrate on other things, focus on other things in the room--until I passed out from pain while doing this. Now I recognize there are some limits to mind over matter.

I hear writing about health issues can alleviate depression at least.

I should be blogging about ADAPT and ADA Restoration and more important things.

Update: I think some of the depression was PMS, worst right before. Aunt Flo just showed up at the door. (Oh my goodness, the things I would never tell people otherwise.)


Wheelchair Dancer said...

hang in.... things will work out.


yanub said...

I am constantly amazed at the cycle's ability to take any situation and make it much, much worse. The day before I start, any thoughts I had been entertaining that my joints might be behaving themselves will be tossed over as every step turns into a painful struggle against gravity. I understand that the median age for menopause is 51. I am counting down the months.

It would be nice to be actually listened to. I find that, unless I have already worked out what I need and what I think is going on, I may as well be talking to a wall as talking to doctor. They no longer have time to listen, and all kinds of pressures to send us off for pointless tests that, if they would just listen to us, they'd know would reveal nothing useful.

FridaWrites said...

Thank you, both of you. I do think part of it is limited time and the other part, as a friend points out, is that in Western medicine they will rarely say they don't know. They certainly can't write "don't know" down as a diagnosis code.

D Phoenix said...

Blog about "more important thing"??? This is so important.

I really empathize with you. I've been to specialists appointments many times where I left feeling totally misunderstood and confused as to where they were coming from. Or I expected clarity with regard to a diagnosis and was met with a doctor not knowing but saying something dismissive because he couldn't stand to admit that he was stumped. With what you're dealing with, a doctor does need to believe your description of the pain and symptoms because it's not like an x-ray or some test will give all the answers.

You're not unbelievable. Specialists haven't been taught well and some are much worse than others.

I'm glad swimming and the NSAIDs are giving you a bit of relief. Is there a chance of getting a second opinion from another rheumatologist? Aunt Flo or no, I can see how you had hopes for getting greater pain management. The way you're engaged with you health/pain, I can't imagine that you won't persevere and get something better. You just might need to rest a bit before the next assault on Mt. Pain.

FridaWrites said...

Yeah, I think I'm just not sure what to think or feel about the docs.

Thank you for believing me! It counts for a lot.

I am thinking a second opinion at some point, even if not a change, but just for additional opinions on it. I enjoy not going to appointments as much lately, so that's been good, but a second opinion might be worth it--maybe when insurance starts over next year.