Pain
- 20 Mar 08, 5:37 AM
I was in the emergency room because of heart erratics, stopped beats, double beats and P.A.T.鈥檚, and after a couple weeks, I gave up and came in. Also when I figured out if I was missing an average of one heartbeat in thirteen, how many more could I afford to miss? So now, 3:00 in the afternoon, and I was hooked up to every monitor possible as my torso jerked a couples times a minute, when the heart double kicked after a missing heartbeat. It hurt.
A woman in scrubs came in and asked, 鈥淥n a scale of 1 to 10, how would you rate this pain?鈥
I thought a few moments about the last 16 months and everything that happened and I started laughing (when I wasn鈥檛 saying, 鈥淥w鈥). Rate the pain? Well, there was the time I ripped over 25 muscles along my rib cages and my upper torso muscles went into spasm. Linda and my care worker had to hold me down while I screamed until the opiates kicked in. Would that be an 8? And the pain level where I start hallucinating is below that, so is that a 6 or a 6.5?
鈥淚 guess a three or four.鈥 I said.
My partner Linda wanted to smack me upside the head but waited till the woman left. 鈥淣ext time you tell them 鈥12鈥,鈥 she hissed at me.
鈥淏ut鈥ut鈥 have had a lot of extreme pain.鈥
鈥淭hen,鈥 she said, 鈥測ou say, if getting a needle into the roof of your mouth is a 10 the pain you are getting is a 9.鈥
Later after being displayed, prescribed and discharged, I kept thinking about the 鈥10 point scale.鈥 How differently would I have rated my chest pain a few years ago? Probably an 8. How useful then is this scale for people who have/continue to experience chronic conditions, relative to the average person who walks into the ER? So I had two female EMT鈥檚 over, both with severe chronic pain conditions, and we talked about this 鈥10 point scale.鈥
The consensus was that until we experienced our condition we 鈥渢hought鈥 we knew all about pain. But how quickly chronic or disabling conditions turn that scale upside down. Because over time, we will experience 鈥榠ncidences鈥 or 鈥榝lare ups鈥 which while turning your face white and making your hands tremble with pain, doesn鈥檛 actually stop you reading or responding to emails (鈥淚f I stopped EVERY time I was in pain, nothing would get done!鈥) And how, now, in an odd benefit, what most people consider a 鈥10鈥 on the pain scale is sometimes just part of the 鈥榥ew ordinary.鈥
One EMT talked about a call-out she did where part of her finger was severed and how, being in a rural location, after icing her hand and the 鈥渇inger鈥 she just had to sit there in hospital, without medication as the shock wore off. Because first they had to FIND the doctor who 鈥榤ight鈥 be able to sew it back on, then HE had to find a babysitter for the kids, and he wouldn鈥檛 leave until the babysitter arrived.
So 45 minutes later this EMT was sitting there holding her finger. And one thought she had while waiting was 鈥淚鈥檓 actually grateful I have cluster migraines.鈥 She鈥檚 had headaches so bad that in a dark room, inside a shut walk-in closet, with a blanket over her head, it was still 鈥榯oo bright鈥 to decrease her pain. She said that level of pain helped her keep sitting calmly while others would be screaming.
How does a person with years of acute arthritis starting in childhood rate pain with the 鈥淥ut of 10鈥 scale? How does someone with EDS who has had dozens of dislocations? Or someone with Fibro with days they can鈥檛 get out of bed?
The people I talked to fell into two groups. Those of us (including me) who NEVER give anything a 10, simply because, after so many times of thinking 鈥淚t can never be more painful than this鈥 something else always pops up. So, for ME, if 鈥淗aving my body sucked through a drinking straw by a black hole鈥 is 10, then having a nerve conduction test is鈥.鈥
The second group says that any time the pain drives you to the point of loss of sanity (however temporary), that counts as a 10 (or beyond). That seems reasonable to me too. Since I have said (more than once) to my night worker, 鈥淚 can鈥檛 sleep unless I relax, and once I relax ALL the pain will come in and I will not be sane anymore, but hopefully the sedatives will kick in soon鈥.okay, here I go鈥.鈥 The next day she said I did manage to sleep after talking to people who weren鈥檛 there and yelling things that made no sense.
Back in the ER, after the 鈥1 to 10鈥 woman I had a pedantic female nurse come in to ask, 鈥淐an you PRECISELY describe your pain?鈥
I said, 鈥淪omeone is reaching into my chest, grabbing my heart, pulling it out through my ribs, and once six inches clear letting it snap back with a resounding whack!鈥
The nurse looked irked, 鈥淚 said, a PRECISE description.鈥 PAUSE 鈥淒o you want me to put that down as 鈥榖urning鈥 or 鈥榯hrobbing鈥?鈥
I said, 鈥淗ow about getting kicked by a horse in my sternum every 13 or so heartbeats.鈥
She glared at me, 鈥淚鈥檒l put that down as 鈥榖urning鈥欌 and swept out of the curtained areas with an aura which blared: 鈥淪OME people!鈥
I think as PWD鈥檚, we have a different, and sometimes very individualistic view of pain. So, I guess the question is, how DO you measure pain? Do you have two scales: one for things inside of your condition and another for that not? As, for example, after having amputated limb nerve pain, how does a hammer to the thumb rate on the pain scale? Should there be a scale for people without disabilities and one for each disability?
Because I do find myself saying things like, 鈥淥h, thank god, it鈥檚 only food poisoning!鈥 That is only odd until you know my condition causes hours of intestinal cramps with NO reason (see, food poisoning actually ends).
So鈥.tell me your pain?
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I have to say I myself have pondered the 10 point scale on many occasions, mostly whilst being assessed by physiotherapists that had never seen anything like my bio-mechanics before!
For me specifically it does seem rather pointless, I have my every day pain that fluctuates between being completely pain free to my joints in my lower body seizing up, and aching. naturally when something new hurts it gets kinda put into a different perspective and i moan allot and get really annoyed by it.
Then when it come to describing my pain Dr's tend to get annoyed at me when I no what is causing it and what needs to be done!
Rib pain. Yep, that's the one that pushes the 10, that has me wanting to bang my head against brick walls and seriously wondering whether it's sustainable over more than a few hours.
I've now downrated that to a 8, because I can contemplate a 9, and there must still be something worse.
That means the main pain from my HMS, the one that feels like I'm being impaled in the classical sense and makes working and rational thought impossible, now only ranks about a 6...
I think I still measure everything on the same scale, it's just my scale has had its eyes opened.
I have to admit that when I got steroid injections into my heels where the doctor was waggling the needles back and forth inside my heels, I experienced a whole new world of agony I had never experienced before. Once it started to go numb afterwards, I was great, no pain at all!
The relevance of this is that when I need to tell my wife how sore I am, I relate everything to that new 10-pointer. In fact, I think it has opened up a new capability for resisting pain for me. Nothing I have experienced inside of my disability has hurt like that has. (Been close a couple of times though - probably an 8.7 or so).
Thanks Doc!!
Jemma: Yes, when a condition fluctuates so much, it becames very hard to describe and you almost want to have the worst of it in front of the doctor. I have also noticed that when you explain it to them as if you actually know what is going on, they tend to immediately either a) dismiss you somewhat/completely or b) send you for more tests
David: I'm with you, rib pain makes head banging almost seem theraputic. I also tend, like you to have the view of, "If I can imagine it getting worse then there must be more land o pain I have yet to explore." Someone told me, "There is no pain like the body destroying itself." - which I thought would make a good mug to drink painkillers from. Like you, I "used" to think as a person who "knew" ALL about pain after being put through grueling elite athletics training. While muscle BUILDING is painful turns out is is nothing like the pain going the other direction.
Scott: You have now convinced me to avoid needles in the heel forever as you are the second person to tell me the "needle in the heel" story (along with the 'Needle in the kidney for biospsy with waggling') which makes me a bit green to read. Also found that nothing like a medical doing a bad, or 'interesting' job to bring me to new levels of pain evaluation.
I have fibro (and as far as my parents and I can determine have had it since infancy) and the ten point scale has always been a source of exasperation for me. These days I use it mostly as a gauge of what percentage of my attention the pain requires of me. I think the highest I've gotten is a 6 or a 7 with kidney stones.
Pain is an individual condition I have a high pain tolerance having suffered pain most of my life since my first bout of polio and an intolerance to analgesics, which does not assist in pain managment.
The weather affects my pain in extreme heat or cold it becomes almost unbearable so if I visit a doctor on a temperate day my pain tolerance is bearable and ndoes not give a true measure.
Five years ago I had an anti-flu injection and within three hours I was paralysed again and since then the scale of pain has increased.
Like Calamity Jane I seem to be accident prone and four years ago my crutches slipped on a wet floor dislocating my shoulder and adding to my discomfort, but how do you separate the pain, I have a multiple disability, which entails visiting three different consultants, each are only interested in their area of speciality, so the finite picture of pain is never truly explored. So you grin and bear it, cheers Hells Granny
How well I relate to some of these comments, esp, "鈥榝lare ups鈥 which while turning your face white and making your hands tremble with pain, doesn鈥檛 actually stop you reading or responding to emails (鈥淚f I stopped EVERY time I was in pain, nothing would get done!鈥)"
I have multiple illnesses including 2 kinds of cancer, arterial thrombosis, arthritis, radiation damage, nerve damage, insulin dependent diabetes. I have 6 consultants and various "specialist nurses" in fact, at one time I counted 30 people involved in my care, most of whom did not communicate with one another. I am being kept awake now by nerve pain caused by getting gangrene after a blocked femoral artery. Morphine is no good for this and amytryptilline seems to be losing its effectiveness after 10 years. Do any of you know of anything else that might work. I can't get an appt with my GP until after the end of the week as he is away. But he is pretty good about looking at suggestions for better drugs so, suggestions please. The NHS seems to be very bad at dealing with multiple illnesses, esp as they often impact on one another. One does not fit the tick boxes and I sometimes get passed around like a parcel when symptoms could fit more than one category. It is exhausting!
The only benefit I got from a 1-10 pain scale was the DLA, which after 2 years of trying, I finally got when I could show the 'assessment team' just how debilitating my rheumatoid arthritis is.
The irony is that most of the time I can detach from the pain i.e. get through the day, albeit slower or faster, and not pay attention to how much pain I'm in. Except, of course, when I over do it and the pain goes off the scale.
The problem, as Elizabeth said, is that if you show you understand the pain scale in relation to your condition, doctors tend to dismiss you. I went into A&E about 14 months ago in accute abdominal pain that felt like someone had lit a bonfire with fireworks... but saying I was at 8 on the scale saw me scheduled for surgery the next morning because they were too short-staffed to to a scan first. Arrgh... thankfully they were too shortstaffed the next day, and a scan eventually happened to reveal a burst cyst that some how was related to the RA.
I know no doctor can know everything about every illness and that they are time-poor, but for heaven sake, if a person LIVES with an illness, a little compassion and some time spent investigating would go a long way.
The pain scale is virtually useless when people with chronic pain are talking to doctors, especially for diagnosis. They're used to hearing about things right when they happen, when you're more likely to inflate your number. When my leg pain first presented, I would have called it a 7 or 8. Now, if I can still walk, I won't rate it higher than a 5.
I saw a definition of the pain scale once, starting with 1 as "pain you can ignore." That's fine for people with an acute problem, but if I told an able-bodied doctor that I could ignore my daily pain, I would get an acetaminophen and be sent home. It doesn't occur to them that what I can ignore, they probably couldn't.
Even for those of us who don't have the kinds of chronic pain conditions that many of the people here are describing (unless you count sporadic tension headaches, some of which can get pretty intense), I have just never understood the "pain scale" thing or why doctors want you to assign a number to your pain. What on Earth is that supposed to communicate to them, especially given that pain tolerance levels are likely to vary so widely from person to person even when they DON'T have chronic pain?
If you mention a pain to your doctor that should be enough to indicate that you're at least somewhat worried about it or wanting help to make it to go away. That should be enough to trigger discussion or the suggestion of tests or whatever, then leave it up to the patient how far they want to push the investigation.
I also get highly aggravated when doctors try to ask if a pain is "sharp or dull" (???? WTF does that MEAN??!!!) or other adjectives that just make no sense to me when attached to pain. Some doctors are okay if you can't really describe the pain well but even then they may look lost or frustrated.
Maybe there needs to be a "pain dictionary" project where patients with varying types of pain and doctors could collaborate on developing agreed upon definitions and descriptions of common types of pain. Descriptions that will make sense to BOTH doctors and ordinary patients, including both patients with on-going pain and also average patients who experience pain as a more sporadic thing. Then when a patient comes in with pain, give them a simple one-page explanation of what the pain scale means and what common adjectives related to pain actually mean in terms that lay-people can understand. Then the patient can use that to translate their experience of their own pain into terms the doctor(s) will understand better.
I've long been frustrated with the idea of a ten-point scale. Often, I've been evaluated by doctors and psychologists who ask me about my pain using that scale. I learned, long ago, that I had to think "if I were a non-disabled person, who didn't have daily chronic pain, how would I rate my present pain?" Only when I began using this system, did doctors take my pain seriously. If, as I used to, I were to answer based on a comparison with my own daily pain levels, instead of rating pain at, say, an 8 or 9, I might say "Well, I'm always in pain, so I guess that my present pain would be about 4 - for 'normal'". I agree that people with chronic pain should be able to use a different system for evaluating and recording pain levels, but considering the individual nature of pain, I've no idea what might work!
This 10 point scale idea is completely pointless.
I'm recovering from cancer, a brain tumor. On one occasion prior to diagnosis, walking down the stairs at home and not really stopping at the bottom.I stepped off the bottom step and just sort of crumpled onto the floor. My head hurt so much that it took me over an hour to get up again.
Is that a 10?
Following diagnosis my medical records now carry a note that I do not react normally to cronic pain.
So much pressure had built up inside my skull by the time I was admitted the docor was amazed that I was contious. For me this level of pain had become normal and would probably been rated as a 3 or 4. During this admission procedure it was decided that I needed emergency treatment as the tumor was causing hydrocefalus that was going to kill me within the week at most. My assesment of the pain wouldn't have added anything to the diagnosis.
I have so much pain it can lead to a fit, so my pain is about ten most of the time, but actually massive pain can be different, you have a pain which is nagging and will wear you down, crippling pain which can drive you through the rook, and the most annoying is continuous pain which will go up and down in a fluctuation and you do not know what the next spasm brings.
I have a morphine pump implanted which gives me pain control most of the time plus morphine to take when I have the more serious.
I cannot wait to have the new PCA when they ask me do you have pain.
I have suffered chronic pain for years now I too have multiple conditions, which they find hard to treat. I did attend a pain management course at the pain clinic and we had to rate our own pain from 1 to 10, though as people have said before, in this stage of my life it's all meaningless as you live with the low numbers without realizing it and people have different thresholds. But here goes, this was how I described my pain then.
0 = no pain
1 = tightness, tingling, tender
2 = sore, fatigue, constricting
3 = hot pain
4 = hot pain but worse
5 = burning, able to walk outside
6 = burning able to walk just indoors
7 = fire, not wanting to walk, having to lay down
8 = fire, enough to go to bed
9 = fire, vicious enough to cry
10 = fire, intense, hospital
This was my own individual chart and would be fairly meaningless if I were to be assessed.