Kickas.org Forums Rheumatoid Arthritis General Discussion #1 RA Web Support Group How many AS members have a diagnosis of RA?

I'm told that I am a classic AS case and yet I often wonder if there is more to the story?

My hands and elbows are generally the worst problem areas but the lower back never fails to remind me that he is the "King of Pain" at least two times each day.

The whole body involvement isn't very typical of AS it seems and the fact that I do not feel better after exercising gives me pause as well. Any exertion turns me pale, sweaty and nauseous requiring me to pass out for a couple of hours or more.

It seems that with the HLA B27+, the history of lower back pain and X-Rays that show degeneration and fusion, the bone spurs on the vertebrae and the UC lead all the doctors to conclude that I have AS but it stops there. I'm convinced there is more going on than anyone realizes at this point.

The fact that no amount of morphine helps me out (I've taken up to five times the prescribed dosage AND even tried chewing up the pills with NO effect whatsoever) plus my resistance to every biologic I've tried (Remicade is up to 600mg and soon to be administered every six weeks) really makes me wonder.

Each day brings more pain and a greater tendency to retreat from the world. It astonishes me that a human being can endure this kind of life...I never would have believed it four years ago. I would have thought that a person would lose their mind completely and the body would simply give up on itself but it seems this isn't the case. That, or I'm just a big wuss whining about nothing at all?

My friend once told me about a documentary he saw about a man who suffered from some sort of chronic pain condition who had become involved in the whole BDSM lifestyle. He apparently associated pain with love due to his early childhood. I can't recall the name of this documentary (neither can my friend) but I have begun to wonder about pain addiction.

This whole post has come off the rails and should be a thread of its own but I'm on a roll...

Do you think we can become addicted to the pain? I say this because I find myself doing things subconsciously to cause myself pain. When I'm watching a movie or something, I have found that I will poke and prod myself in nerve points which gives me a considerable amount of pain and suffering and yet, even once I become conscious of this activity, I keep doing it? And it is somehow comforting as if I need to maintain a certain level of pain? At night, I often claw at myself and wake up bleeding.

I wonder if any of this makes sense to anyone? Surely I cannot be the only person doing this.

Is it possible that the mind's way of coping with this relentless assault is to become addicted to the pain? This isn't something I have discussed with my doctors since most of these ideas just coalesced into conscious thoughts as I wrote this post...it has got me thinking though.

Trying to keep it all together,

Chris

I have to think about this a bit, Chris! When my pain levels improve, I often find myself pressing on areas that were a source of significant pain and often end up going ouch! But I don't think that's because I'm trying to cause pain, it's some sort of checking mechanism because I'm trying to figure out if there's any pain left in that particular joint or not.

However, my pain tolerance has changed. My current pain levels would probably have had me back on percocet a year ago, whereas right now I'm continuing to manage without (although I'm having rather a miserable time of it).

Not sure if I've answered your questions but I'm going to think about this a bit more. Interesting ideas.

chris, i wonder if, instead of an addiction to this pain, the things that you are describing doing, is your way of trying to have some control over this pain. if you can't make it go away, then maybe you want to feel that the pain that you do feel is something that you did, because you chose to do it, you controlled it, it will stop when you choose not to do it? don't know, just another idea. i could understand a feeling of loss of control and trying anything to regain just a little bit.

also, i wish we could help you as much as you help the rest of us. you always seem to have just the right words and i feel that whatever i say just seems so inadequate in comparison. i do hope our just being here for one another is something. i do hope you can eventually find some relief over this pain. that is one reason to just hang on through it, things often do get better, not something we can control or predict but experience (and my internal guide) tell me this. or maybe that is my coping mechanism.

It's funny to hear that you worry that your words might sound inadequate when I am constantly humbled by the things you and others write in here every day.

Being here for each other is EVERYTHING. I don't want to imagine what might have become of me had I never found this site. You folks are my lifeline for sure.

I'm feeling sleepy suddenly so I'll take advantage of it and go to bed.

See you all tomorrow,

Chris

Apparently I do now...lol

Welcome.....lol

Lisa, I am sorry. How did they diagnose you? With labs or physical exam or both? It is the pits. It is bothering me now more than Lupus or AS. I have to use both hands to turn the key in the car. :o(

Love you all. Is the family ok?

Possi