flares, canniboids, pain and memory

[nashville_brook]

i heard a story on npr a long time ago about how women have more receptors for canniboids or produce more natural canniboids during childbirth which is to explain how it can hurt so much, but seem like "no big deal," later.

with an illness that flares, i find that when i'm okay i don't remember how bad it is when i'm in pain. it's easy to appear not-sick to a doctor. it's easy to personally deny the pain.

until it's back.

then you can't believe you couldn't remember. so, i wonder, if there isn't something about the nature of pain that screws up your memory, or if the disease has finally eaten into my brain. because right now i'm in the kind of pain that i couldn't recall existed a day ago.

the worst part is the silly referred pain. the spots on the front of my thighs that ache for no reason. like a charlie horse. just b/c it's such weird place to hurt.

anyone else have trouble remembering pain?

[REP]

1. Not In The Least!

In no particular order, the most intense pain I've ever had: all four impacted wisdom teeth extracted at once (jaw needed to be cracked); kidney surgery to remove stone in lower pole; Crohn's flare '00; Crohn's flare '02; ruptured ovarian cyst; kidney infection '93; kidney infection '98; kidney infection '80; and the colonoscopies I've had without anesthesia.

Of course, the pain from all of those (except the wisdom teeth) was so severe I literally couldn't stand. I've had plenty of pain where I didn't feel like standing, but with those, I literally could not stand. One thing I have noticed, though, is that with an ordinary kidney infection, like the kind I've been fighting for the past three years or so, even though I've know I've been in worse pain, it's still nearly unbearable. Kidney pain is said to be the one of the most unbearable pains humans can have, but I pass kidney stones every 45 days or so, and while they're not a ton of fun, I'd MUCH rather pass a stone than have a kidney infection. (And it's not because I'm a woman; the male and female ureters - the connections from the kidney to the bladder - are the same length and that is the part of stone passage that causes the most pain. The male urethra is longer, but the stone doesn't stay there long in either sex.)

As for giving birth - I've never done that and thanks to a talented surgeon, I never will, but to hear women who have go on and on about it, apparently they remember it quite well!

[mopinko]

2. i have a strange pain chemistry

things that are supposed to hurt don't, but then pain comes out of nothing. i have 5 kids, i never had a drop of pain meds. i never wished for any. i experienced it as out of control muscle contractions like puking.
just a couple weeks ago i crashed my bike. i picked myself up, knew i landed on my elbow, which hurt, shook it off and rode on. it wasn't until several hours later that i realized my hip hurt, and looked and saw a huge, very purple bruise. also realized that the force of landing on my elbow had jolted my rotator cuff. fibro being what it is, 3 days later, i couldn't get out of bed.
so, my pain response is strange to begin with. i guess right now, i can't really call up that sore shoulder. but i am not sure that pain memory is any worse than any other part of memory. i can't really call up the pain of fights with my ex-husband, either.

[Warpy]

3. Fibro is different

First, all pain is experienced in different areas of the brain than in normal people. Second, the fluid in the brain and spinal cord is awash in Substance P, the transmitter that carries pain messages between nerve cells.

What you're describing isn't unusual. I'm often a mass of bruises and I can't remember where I got any of them. Since fibro makes me clumsy, I know I earned them all honestly, I just can't remember how.

As for remembering pain, the biggest component of the pain experience is the element of fear that it's going to be like this forever, and we know we'll reach a limit of endurance eventually. Then the pain ends and we know it wasn't forever and we tend to shrug off the memory of it.

[nashville_brook]

4. that's it. that's really it -- omg

i've been beating myself up on both sides of the pain. first, when i'm pain-free, i think i'm a big whiner. then, when i'm in full flare (like today and yesterday) i think, that i'm irreponsible for not being able to get a doctor to understand it. i a big self-blamer.

i don't know much about fibro. i've been going under the assumption that i have a lupus-like illness. maybe it's similar.

but the thing about the fear cut so close to the bone. i have alot of organ involvement -- kidneys and liver -- so when i get The Pain, i also get the intense fear that i'm just going to up and die. the pain itself is kind of reassuring, bc at least it's something. at least i'm still here.

i almost drove myself to the ER this morning, but i've had such horrible experiences with complaining of "pain" that i just couldn't gather the strength. plus, i don't have any money or a bank card -- newly divorcing. i'm in transition. just got a new job. i start on monday. i'm going to be a mess. my first day and i'm going to walking like Igor and weeping in the washroom.

that's the other thing. i feel like a "flake" for the first time in my life. for nearly 40 years i've been the most down-to-earth person i know. people think i want sympathy. or that's how i perceive it, because that's how i'm being treated in the divorce. blah blah blah.

then i'm sure i'm a flake when the pain ends and i have trouble even putting my finger on what the big deal was. what a whiner!

i bruise easily too, btw. i amaze myself at how i can totally walk into door jambs and mis-judge how wide i am. i don't do it in the car, thank god! but i have trouble sensing my body sometimes. then i look in the mirror and can't put a memory to a bruise.

i had a very good friend in college. she was an adunct prof in philosophy. she taught phenomenology (phil of body, kinda) and feminism. she had what she called, "an autoimmune disorder." so, many days we'd have to cancel plans b/c she was not feeling well.

as a 20-something, my perception of pain didn't go much further than hangovers and migraines. she'd complain of "joint pain" and fevers. i couldn't wrap my brain around it (how does a joint hurt? what would that feel like?).

later, i moved and heard that she was having psychological problems. bad, organic, and obvious. as i read about inflammatory disease i'm finding that it can attack any system. when it was "just" my liver and kidneys it seemed less threatening. the thought of losing mental capacity with this shit is terrifying.

i could go on and on. i'm in the middle of it all right now. it exists to me. i need to remember.

[havocmom]

5. Gave up on doctors years ago

Pain flares getting worse. Balance getting worse, so I fall A LOT. Burises I cannot account for at times when I don't fall.

Dealt with one doctor who figures any woman complaining of chronic and migrating pain just wants a fix. Actually, I can't take most pain pills. I just want an explaination... fuggit about it! I have given up on the Medical Dieties who have been so bigoted they don't see me they just see their assumptions.

And I am getting worse by the month

[nashville_brook]

6. deprivation schema -- applied to my illness

no one is going to try.
no one is going to get it.
no one cares.
no one is going to help.

everyone looks on you with jaundiced eyes.
everyone thinks you are a drug seeker.
everyone thinks you are making it up... hysterical...

blind, they are.

so what's the point, really?
why put yourself thru it?
why endure the bills along with the humiliation?


when the pain comes, so does the schema attack and i stay as far away from doctors as i possibly can.