Ok, so you know when you go to the dr and they ask you on a scale of 1-10 whats you pain, how do you base your answers and where are you on a daily level on the scale?
To me:
0-2 doesn't exist
3-4 only minor discomfort on use
5-6 hurts all the time but not terribly
7-8 hurts really bad, can't really focus on anything else but the pain, hard to work and function
9 Not getting out of bed and better bring me an extra bottle of pain pills
10 going to the er, right now.
On average, the majority of the time I am 7-8. Very, very, very rarely does pain pain ever get to the 5-6 range and this is with taking oyxocdone 40 mg every 12 hours, prednisone 5mg and humira weekly. Plus a slew of other drugs including vits, adrenal, sleeping pills and muscle relaxers.
How are you supposed to respond when people say cheer up tomorrow is another day knowing that tomorrow hasn't been any different in the past three years?????
Sorry this is such a downer post, having a day I guess. Some of you may remember the bil's wedding I have been so trying to get out of, well, its next weekend. The said bil emailed me yesterday and wanted to know what time we would be there and when I told him not until its time for the rehearsal dinner, he got a bit upset that we were not helping set up. When I mentioned I probably wouldn't stay for the full rehersal (I am not in the wedding so don't need to be there anyways) and that I probably wouldn't attend the Sunday brunch, he stopped talking to me. Do these people just not get it or what???? Sorry that got a bit off topic, just venting, don't mind me!
Oh michele, people just suck. They walk around in blissful ignorance when they should be happy that you're going to attend at all. But who knows, maybe the fact that he's stopped talking to you will be a blessing in disguise.
As for the pain scale, I hate it. I have no idea what number I am or have been. I used to try to chart it on a spreadsheet to find patterns, and I would spend more time trying to figure out what number I am and getting frustrated. When we hurt every day, I don't see how the mind can "objectively" distinguish any more. Plus we get accustomed to it, so last year's 9 might be this year's 7. I wish they could take your pain scale like they take your temperature...
As for your scale, I guess there's got to be some pain for 1-2, but I'm not sure what it would be. Based on what you wrote, I would be a 6-8 most days, and that's with round-the-clock Vicodin ES, as well as Lyrica, Skelaxin, Imuran, a little pred (2 mg/day) and all the rest. But what I've noticed is that some days I'm able to cope with it much better than others, and I don't know why.
So maybe when you think about tomorrow, think that it might be one of those days we can cope better? Or that it might be one of those days when someone around us understands?
Sorry you're having a bad day...I'm sending a hug your way.
0
Pain free.1
Very minor annoyance - mild aches to some parts of the body. No pain medication needed.2
Minor annoyance- dull aches to some parts of the body. No pain medication needed.3
Annoying enough to be distracting. Over-the-counter pain relievers (such as Naproxen or topical treatments such as Arthritis Pain relieving rubs) take care of it.4
Can be ignored if you are really involved in your work, but still distracting. Over-the-counter pain relievers remove pain for 3-4 hours.5
Can’t be ignored for more than 30 minutes. Over-the-counter pain relievers help somewhat (bring pain level from 5 to a 3 or 4) with pain for 3-4 hours.6
Can’t be ignored for any length of time but you can still go to work and participate in social activities. Stronger painkillers (such as Ultram) relieve pain for 3-4 hours.7
Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers (such as Ultram) are only partially effective. (Stronger pain killers bring pain from a 7 to a 4-6 level.)8
Physical activity severely limited. You can read and converse with effort. Stronger painkillers (such as Ultram) are not effective. (Narcotic painkillers do bring this pain down to a level 3 or lower level.)9
Non functional for all practical purposes. Cannot concentrate. Physical activity halted. Panic sets in. (Narcotic painkillers bring the pain level down from 9 to the 4-6 level.)10
Totally non-functional. Unable to speak. Crying out or moaning uncontrollably - near delirium.[QUOTE=micheleb]
How are you supposed to respond when people say cheer up tomorrow is another day knowing that tomorrow hasn't been any different in the past three years?????
[/QUOTE]
I have recently had a people greeter at Wal-Mart actually say something like that to me, last week. It was on a day when I just ached all over, my knee was swelled, could not walk right, my neck hurt, but not nothing that bad. I walked thru the door and the lady looked at me and said "Smile it can't be that bad." So... I turned to her and gave her a smile and went back to my face looking the same.
She was right, it was NOT that bad, I have had worse days, and certainly have went to Wal-Mart on days were I could not even make it to the front door without crying.
I do not know where I was going with that... I got distracted by my son, so I do not even remember where I was going with it now. Maybe if I remember later I will reply again.
Oh and when a doctor or nurse asks me what level my pain is, which is hardly ever, because I am one of them that my face tells how much pain I am in. I usually do not even answer and just sit there and look at them like they are stoopid. Then they move on to asking questions.
Copious amounts of Xanax. You are a good wife to go along with all this for your husband's sake. So what's the new sister-in-law like?
OMG love this thread!! My pain is 5-6 and sometimes 7-8 Im tired of taking pain meds around the clock. Cant it be harmful taking them for a long period of time????? I take vicoden ES at night and reg vicoden during the day. I thought taking the Humira would stop or at least slow down some of this pain but it hasnt. It's the olnly way I can get through work on a daily basis. Pain assessment is now considered the 5th vital sign and by law, must beHmmm. According to the scale kweenb posted, I'm at a 3-5(a rare 6) now that I have the muscle relaxers. I'm not taking any meds that are RA related...........I wonder if I really pushed for something, if I could knock it down to a 1-2 all the time? I think that the 3-5 range has been normal for me for sooooooooooo long, that I don't even think to mention it. Or persue any further treatment. There's the downside of having this forever, the motivation isn't there. But now I am curious. A 3-5 without ANY meds seems soooooo treatable to me. And yet I sit and say nothing. What a mook.
I canceled my appt with my RD on monday. They are way too far away, with gas how it is I can't afford it. I asked her what I'm supposed to do, because there ARE no RDs out here. She said that two of them in that office come out here on a regular basis - one comes out 2 times a month, and the other once a month. She talked to my current doc, and she said she totally understood, and is going to try to get me set up with one of them. Until then, she said don't worry about coming out, and she'll continue to fill my muscle relaxers for me (I dont even take them but a couple times a week at the most anymore) I'll be getting an appt. at the end of August it looks like, and I won't have more than a 30min drive. MUCH better than the 1.5hr!!!!
I always thought that the pain scale was a good way to measure an individuals pain, because pain is so subjective. People have different tolerence levels, so I can't in a absolute way tell my doc how much something hurts. The best I can do is tell him how I interpret that pain. The pain scale allows me to tell my doctor how much pain I'm feeling according to my personal tolerence level. If I say it's a 9, he knows I'm in severe pain. Although I do agree that you never really know what the ceiling for pain is. I never knew that pain like RA pain existed till I was in it.
Boy, during my worst times after the heart operation it didn't take me long to scream into the phone 'get me something'!! Oxycodone worked for the intense pain (the 10!!) and everything else went down from there. I think you just have to guess. If someone asks you how much pain are you in....you'll know between 5 and 10 is a big problem. Under 5 for me is like bumping my arm on a chair or something. Up from there I start asking for HELP! I'm not good at taking 'pain'. LyndaWhat I have a problem with is when the patient tells me his pain is a 12Hi, I've been thinking about the pain scale: In addition to our 'regular' chemical cocktail of RA drugs. Pain pills of choice
1) you need 1 asprin (or Tylonol) and the pain goes away. 2)-you need 2 asprin the pain goes away. 3) you take the 2 asprin , it doesn't help. 4. you go on to 1 vicodin, it helps. 5. you take vicodin 3 times a day!it doesn't help!, 6. you start your day with pain killers/noon/night. It doesn't help much. 7. You start to move on to oxycodone at night. 8. Nothing helps so you think about taking oxycodone several times a day!!9) nothing helps and you are screaming in the mornings. 10)off to the ER!
I didn't do this too well, but maybe this is just my picture? Lynda
When I came out of recovery from a colonoscopy about three years ago (it was an infected, inflammed gall bladder, not my colon), I was still under and was moaning and thrashing around as I woke up. Man, they shot something into me pronto (must have registered a 10 on their scale) because after I settled down and started to wake up, I realized this out patient clinic recovery room had about five people in recovery who were just fine, and heading out the door. They didn't give me the shot for pain, they gave it to me to shut me up so the other patients wouldn't know that some people come out of this procedure in pain. Politics and advertising.
They finally got me out of bed (needed it for the assembly line) and let me sit on a chair while I collected myself. Some head nurse came by, stopped, pointed to me, and said WHY IS SHE STILL HERE? They literally dragged me out I was so wobbly from whatever they shot me up with and with my hubby's help, poured me into the car. The part that bothered me the most is that the GI doctor when I later saw him for my typical "normal" colonoscopy results, wouldn't address why I reacted so horribly to the procedure - I know now its because of my disease, and disturbing anything inside of me results in a bad reaction. Doctors. I won't repeat the "m" word.
The sister in law seems nice enough really. A bit over zealous on the religion thing as well but has been nothing but kind to me!I threw my rheumy for a loop when he did the pain-scale with me last visit. I replied "6.3" He stopped, began to laugh and said that wasn't in the scheme of things -- he'd give me a 7. I told him 6.3 made as much sense as quantifying my pain on his silly scale.
My pain scale has changed significantly. When I had my children, I would have rated that a 10. Looking back, childbirth is an 8.
These days, by 9 I am throwing up from the pain and I am completely incoherent at 10. My normal everyday pain is a 6 or 7. Hubby can tell by looking at me if I've put off taking my pain meds or am due to take them soon. Rheumy wants me taking them regularly rather than waiting til it gets bad and playing catch up.
I'm with you Deb, the pain of my first round with RA was worse by far than childbirth. And I didn't even get a baby out of it!!