Monday, May 23, 2005


My rheumatoid arthritis (RA) is acting up lately. That means my hands, feet, and hips (mostly) throb quietly all day at around 4 on the 10-point pain scale. The constant nagging pain is exhausting and gets in the way of all sorts of things. My hands aren't quite useless but I find myself dropping things, not to mention putting DD through an unnecessarily rough time when trying to put her hair up. For some reason, the cat's prescription bottle has become completely impossible to open, even though my own prescriptions remain accessible.

When I'm in a flare (that's what it's called when a chronic disease like RA rears its ugly head), there are two main questions that keep nagging at me: why is this happening? and how long will this last?

I think I have a handle on why this is happening. I've been taking minocycline, the only antibiotic prescribed for RA (and no one is exactly sure why it works) 2x/day now for about a year. One of the great things about it is that it's cheap, especially as I can get a 3 month supply from the mail-order pharmacy for less than $20. You can't beat that.

Except... I let my supply run down and didn't realize I needed to get a new prescription, which means, because this is mail order, having a new prescription physically in hand to mail to the pharmacy. Arg! I finally arranged to do all that, but I knew that it would take at least a week, maybe two, for the new supply to arrive. So I rationed myself, one a day, until the new prescription came in.

Happily, I only had go on the half-dose for 5 or 6 days, but on the third day I was already starting to feel it. I've been back on the full dose for the better part of a week now, but it's not getting any better -- if anything, it's getting worse.

My weight was up to 132 pounds this morning, the first day I've been over 130 that wasn't post-operative in I don't know how long. I have no doubt as to where the weight is, as my hands and feet are swollen -- the rest of me is, too, but it's not as noticeable.

I'm thinking about what I've been eating, which has been more relaxed than usual, given the pending LID. I haven't been exercising, but then again, I rarely exercise, so that's nothing new. I've had periods of lazy decadence before, though, and none of them have triggered a flare.

The last thing I can point to is that I've been really, really bad about staying up too late. I've had a few 4AM bedtimes recently, which is just too stupid for words. It's my quiet mechanism for freaking out, and it's probably the most destructive thing I do to myself. Naps just can't make up the difference in lost sleep hours.

On the other hand, I've been through similar freaking-out-staying-up-late cycles before, and they haven't triggered a flare.

Maybe it's the combination of everything? It probably is, but there's no way I'll ever get a definitive answer.

So now I'm doing my best to get out of this thing: taking my meds 2x/day like a good girl, and getting a hold on my ridiculous excesses, diet-wise. The one thing I've been failing at is getting to bed at a decent hour, but tonight is another opportunity.

Diet, medications, exercise, sleep -- those are things I can control, but there's no assurance they'll work. I've had a really good year, RA-wise, even though I've had surgeries and radiation and all the accompanying psychic trauma. This particular flare came on fast, like I fell into a deep hole, and it is taking way too long to climb back out again.

The timing is lousy, but that is no coincidence. If I weren't stressing about the cancer stuff, would this be happening? Is there any point in asking questions like that?

No -- and there's still no word on the schedule for the Thyrogen shots and body scan.


ChaiTime said...

I thought I was the only one who stayed up late like that. You know, the way you described the "freak outs" was so similar to what happens with me. I have "flares" but not from some arthritic ailment. I have a protruding disk in my lumbar area and for whatever reason it will get all inflamed all of a sudden and I can spend days in agony. I don't have a presciption for it, but I ran out of percoset (for nighttime only) and now I have to go see the doctor again to see if I can get this particular flare handled. Getting to bed at a decent hour would probably help too. LOL

Sheik Yerbootie said...

Happens to me all the time and it really has nothing to do with meds because I am absoutly anal about taking my RA meds.

It's the stress. You don't know it, but it's there. And when you place more stress by late nights, etc., you get the magic double whammy.

I'm in the middle of one right now - my right hand joints are sore as hell and my right knee is crippling me. I know it's the stress - I am placing too much stress on myself and I honestly didn't know it.

Just look at it this way (which is the only way I can because the RA pain is always with me), it will get better.



John A said...

Late, but -

Just in case, check your [Internet?] supplier for a fax number the prescriber can use. I know has one, but you do have to look for it. Just one (of 8!) of my meds is $60/3mo there, vs $136/3mo at a "local" [Walgreen] pharmacy - and it is not a re-import.

But I still hit the "local" two or three times a month, for some prescriptions and even general shopping (they sell milk at $0.70/gal less than the grocery).