On a scale of 1-10

My 10 is two battles with spinal meningitis.

My norm - with pain meds - is about a 5 these days... but my migraines can get me to an 8.

For me, a 5 is stable and I can function there.

Jaw replacement surgery was an 8. I've always been told that 9/10 pain is like a severe trauma(loss of limb, burns).

I hate the scale since it's so incredibly subjective.

The 2 events in my life that were 10 without a doubt, were when I had pancreatitis at age 28, and that level 10 pain lasted for several hours, as they would not administer any pain meds in the ER until they were able to bring in an off duty doctor to make the dx. It was like having a hot, serrated knife being jabbed in and out of my abdomen endlessly.

Second level 10 pain event was from a spinal tap that went terribly wrong. My entire body from head to toe felt like one huge raw nerve (like the worse dental pain you could imagine but covering all of your body). Fortunately on that one, it only last 1 minute or so. To this day, I would never submit to another spinal tap, not unless I was put under first.

On my "normal" CP days, with meds, my pain level is in the 4-5 range, perhaps at rare moments, it might drop to a 3 for a short period. Not sure what it would be like without constant meds.

On my "severe" CP days, I can peak to the 7-8 range at times, perhaps averaging a steady 6, with all the meds that I am legally dosed to take.

We would all agree, that pain is very subjective. Some people have a higher pain tolerance than others naturally. I would say prior to my troubles, my tolerance to pain was average. But now, with all the CP in place, any new pain from any new event, seems to be aggregated, perhaps because of dealing with all the constant regular pain.

David

Hmmmm worst pain I've been in was either child birth to my daughter... I went from 3cm to 10cm in 40 minutes, yow! Or when I fell off a fence and broke my wrist on the joint and it was hanging off. Kidney stones are pretty bad too. Probably about an eight or a nine. Daily I'm at a five and my spikes get up to about a 7 or 8.

I think the pain scale is only relative to the pain you've personally experienced. I pray I never lose a limb to find out what a true ten is. LoL

One of the issues I have with the pain scale is that it is usually depicted linearly.

But, as I understand the numbers, 1-2 is less of an increase than 4-5. Likewise, between 9 and 10, the difference isn't too clear.

So, I think it should be roughly sigmoidal -- i.e. the difference in value at the bottom and top should be less than in the middle.

1.2..3...4....5.....6........7.......8....9..10

I'm not sure if I've ever had a 10 -- I take that to mean so much pain that one passes out. My worst pain, I think, was when I impaled my hand as a kid -- tripped on a hike, and impaled my left palm through a wood spike... broke bones, etc.. I was screaming beyond reason.

Mostly, my pain is a 3-4, by which I mean bad enough to interfere with concentration unless some strong input is distracting me. Roughly 50/50 I wake up with my pain <2, within an hour it moves to 3-4. It will move up over the day, and spike periodically to a 7 (too much pain to eat, to have a conversation, to focus even on a tv show).

5mg of oxycodone will cut a 4 to a 2
10mg will cut a 7 to a 3.

What made me adjust my numbers was a very very bad spinal headache after a spinal tap, that spinal headache was a 10 without a doubt...but my day to day pain usually around a 5 maybe 6..but even after saying that pain is still so subjective to the individual...what might be a 10 for me may not be a 10 for you...who knows...I just wish they'd come up with a better system than those numbers...and lately I have been taking more meds to function, but my doctor allows that for me...

That's the way were taught 35 or so years ago David and all these years later I've found it to be absolute! The pain seems to suck out the very ability to even moan and severe burns are a prime example. Its almost as if they've left the building? You can question them and they may look at you but its as if they cannot understand what it is your asking. Hard to describe if you've never seen it. They may react to stimuli but generally in an almost robotic or automatic way. Like holding their shirt out to put on, they may put their arm in but its like an involuntary action without any thought given to the action. Yes I believe its a safety mechanism built into each of us that somehow our brains shuts off the link between awareness.

I liken it to frostbite, you feel the pain as your freezing but then the point of crossing into frozen and there's no more pain just nothing!

Scary and I can truly say the closest I can think of that I've ever came was not physical but actually emotional pain from the grief of holding my dying child. I was beyond the pain at some point.

Oh you dont ever get over it and it is probably more the reason my numbers on the pain scales are lower. Losing anything after that, my knee, my ability to work, even the loss of my parents seemed like a walk in the park compared to.

If the professionals that treat us look at the scale in that light such as your brothers, that "faraway removed " from look then anytime we're walking, talking, yelling, claiming a 10 wouldn't they consider that its an exaggerated description of our pain? Doesn't that indicate that the scales possibly "hurt " us more than help? I think so. Kinda sets the pace for how well or not we get treated.

As a person whose lived through a 10 and as a CPer I think that scale is pretty off its mark. Living with or rather learning to live with pain has hardened us, we demand ourselves to "carry on " at levels other non-cpers are curled up in a ball crying at.

If breaking your arms say a six? How many of us take that is a good day? Go to work? To the store, do Normal things?

Thus the reason I always tell people to be very careful when doing your own SSD papers not to say never and always, and pick your numbers wisely because they use that scale often and Ive been inclined to believe its more to trip you up then aiding them in deciding your case.

And childbirth is awful! The closest thing a man will ever experience to it is a kidney stone and its much smaller than a baby. I know people try to play down how bad it is because the outcome is great. My first childbirth my daughter died during L&D so there's not always a happy ending. That's the worst pain I've ever had.

No worries! Its a common misconception. ;-)

Vickie,

When men self-cath, they are using very small diameter pre-lubed disposable caths. Lot different than having a doctor or nurse insert a large diameter foley catheter in place.

When I was going through the 1 1/2 year total period of having to have caths, they were being inserted into an enflamed bladder neck/bladder - from the radiation damage. The pain sometime was so great, that they had to get two people to hold me down.

Later when I had Suprapubic catheters (for nearly a year), even more painful, as they exited a hole below my navel, instead of through the penis, and due to the scarring and burned bladder, it was almost unbearable. The doctor had to exchange the caths every 4 weeks due to sanitary reasons, and he had to work fast, pulling out the old one, inserting the new one. With that type of cath, the hole in the bladder can close shut in as little as 2 minutes, being that the bladder is actually one of the strongest muscle in the body, male or female.

I still have trauma and nightmares from that period of my life. Thank goodness, I could never be cathed again, now that I have a Urostomy. The stoma itself has no nerve endings, so I never feel anything there. And my former bladder neck is sealed shut, and can no longer be surgically opened.

Yeah, there are all kinds of neat medical related pain sources out there.

David

This is a really interesting discussion, as well as terribly sad too, as the poet Louise Gluck wrote, "...goodbye, goodbye-- the one continuous line that binds us to each other." Every time I get ready to post something several other posts pop up with new ideas. In a pretty random order are some of my thoughts on these various things, and no, I have nothing better to do at the moment ;)

-- surprises me to hear about the pain with self-cathing. I self cathed in 1st grade with a bladder that had been butchered by a malpractice and while uncomfortable it wasn't too bad. Self-cathed again in my mid-20s after a failed urostomy takedown with the bladder rebuilt (poorly) and again, mildly unpleasant but that was it. Not disputing anyone, just surprised to see that, that's all

- I agree with Vickie that those SSD application areas asking to rate the pain and how it effects you can be pitfalls if you're not careful. Aside from the subjectivity, what we say pales in comparison to the weight of test results (and I know not everyone has readily quantifiable conditions.) It's easy for SSD to dispute our pain rating, it's less simple denying piles of MRI and CT scans that look like someone was run over by a truck and put back together again by Dr Frankenstein

- as some others have mentioned, I don't like the pain scale. It's kinda sorta okay for acute pain, where even in its subjectivity there's at least a personalized comparison, but think it's a very poor measurement for chronic pain. It doesn't take in the grinding exhaustion of it all, nor does it factor our tolerance for the middling pain levels, nor does it acknowledge that many with CP have suffered extreme pain experiences which kind of pro-rates our scale towards lower numbers, nor does it encompass the consistent fluctuations of pain throughout any given day. We might be fine by our own lights at the exact moment the question is asked but 2 hrs earlier you were barely able to speak while even one wrong move or an unfortunate change in environment (say being stuck in the car for an hour cause of an accident on the highway) will wreck the rest of the day and maybe then that night's sleep and the following day as well.

- Vickie's description of the burn victims was fascinating in a terrible way. Thank god I've never experienced anything like that, where the pain pushes people into a completely different realm of perception and reality, but had very brief glimpses during a few periods of extreme illness and pain. I called it "the gray place" one time talking to my wife, where the effort to assimilate the pain takes so much effort that you're really not quite on this plane. You might react in a properly to stimuli but you don't hear the words said or take in most of what's around you; it's like a dream where you're both floating above your body but simultaneously buried deeply within your physical self and the pain. This is a poor description so will stop here, and again I've never gone through what those burn victims have, or what many here have and do experience either.

- my worst pain experience might be a fullblown migraine coming out of that failed 10 hr surgery I mentioned. I've only cried from pain a couple times and that was one of them. No one knew what to do, I was retching so hard they were worried about the stitches. My parents were at the nurses station begging them to just knock me out again with versed or something when an orderly also went up and said "Y'all need to do something, that dude is in trouble" (direct quote via my mother). A random resident filling out paperwork overheard and suggested injectable Imitrex, which was a new drug back then. Each of the shots set off more retching but it worked, and may the good lord forever grace and favor that unknown resident

Other pain highlights include: a bowel obstruction from adhesions where spent 3 days in agony cause an acid reflux surgery a couple years earlier meant I couldn't even vomit so the stomach acid and bile just kept building up, barely survived that (and one of the times glimpsed 'the gray place"); a Cipro reaction that caused so much swelling inside an ankle joint that my sole turned blue and squishy from internal bleeding; accidentally tearing out a nephrostomy tube; as a kid a post-myelogram headache in the back of a VW Rabbit during the 3 hour ride home from the hospital; and anyone who has ever gone through dry socket can attest to that muther.

Ahhh, memory lane... :)

- @ Purgatory: I love that you quote "Session 9" in your sig, great line and an excellent movie :)

ed. didn't see Purgatory's post while typing mine, that certainly explains some of the self cath issues

Post Edited (Gosford) : 10/22/2013 2:30:09 PM (GMT-6)