Thank you Red! This will be very helpful to alot of people here. I am putting together a information page and would love to include this with your permission.
Please do Sandee. I felt it to be important because I have heard people say that their pain number is a "10" in the hospital or in therapy, because the doctor, nurse, or therapist says to them that "10" would be described as the "worst pain you have ever had".
We have all experienced different pain levels in our lives so when they ask in that context the patient may not be giving an accuarate answer. It also leads some doctors to believe that some pateints may be exagerating about their pain level.
Thanks Red, nice and simple.
I've experienced the situation where the doctor only wants a number - which is clearly unable to convey much at all, especially given the multidimensional nature of pain. Even the pain clinic I attend did not offer or provide an informative scale with the original questionaire, IIRC. The "worst pain you have ever had" is a poor choice for defining a "10", as you've pointed out. When confronted with that I've redefined the top end of the scale as 9+ being ambulance job and even passing out from the pain itself (which is the worst pain I've been in) and a 10 is whatever is worse than 9+.
Personally, I think the scale as you've described it is a good starting point for getting some kind of reference point for both the doctor and patient. While I'm lucky in being able to walk and generally move limbs, I suffer from chronic upper thoracic pain - central neuropathic as the current best guess - and associated muscular rigidity in neck/shoulders keeps me in the 6 or 7 zone several hours a day. Without medication and some resting breaks that is. With medication I can usually knock a few hours off of the 6 or 7 zone, dropping back to 3 and 4 levels.
I never get better than a 5 on medication. I have had too many sugical procedures in a short amount of time.
I have been trying to get more active lately, pain be damned, but it usually leads to me having to remain in bed for an extended amount of time afterwards. However, we all have to do what we have to do.
Nerve pain is the worst there is, because most pain medications don't do much for it. Lyrica works well for nerve pain, but it makes you very drowsy.
I hope you feel better.
I am terrible with trying to relate my pain levels to my doctor and this helps alot.
Some people will say they are on a level 10 being the worst pain and this is not accurate and leads the doctor to believe they are being dishonest. This is why this is so important to provide the right number.
A level 10 kind of pain would be like having a broken leg and no meds or being in an accident where you are mangled. Now childbirth comes very close to a level 10 in my opinion:)
It is always best to relay your pain level in a realistic manner s the doctor can try and get it down to a level you can live with. As I said saying your on a level 10 is not realistic.
Living with chronic pain we do have a higher tolerance to pain but that does not mean we do not hurt and sometimes feel like we are at a level 10.
I am new and have been reading others' stories. It is so good to know I'm not alone. The pain chart is very helpful. After surgery, at new specialists' offices, here and there over the past ten years I would be asked to rate my pain 1-10. Sometimes I would just get a range of ten smiley faces to a big frown face. "The worst pain you've ever had." Does that mean the worst pain that I have ever had myself, me, just in my personal experience or do they mean the worst pain that anybody on earth has ever had? Obviously, the guy in that scene from Gone With The Wind where they are removing his leg in a battlefield hospital without anesthetic has the worst pain EVER. But what do the doctors really mean? I now understand what the heck they wanted from me. Thank you! The difficult thing is that I may be (on meds) functioning at about a 3 and suddenly a sharp pain like a knife will run from my foot up my calf. Then the electric shocks start and I, in a matter of seconds, am trying not to burst into tears. No warning.
I have bilateral idiopathic peripheral neuropathy. The docs thought I had tarsal tunnel despite negative nerve conduction studies. After years of conservative treatments, I consented to surgery. I had the first foot done and it was a complete failure. I was worse than ever. I changed surgeons and he found another nerve that was constricted and a ton of scar tissue from the first surgery. I had the other foot done a few months later. When I not only did not get better but the neuropathy got worse...and worse with the addition of terrible pain in the surgerical sites, I went to a rheumotologist (sp?) and found out I also have fibromyalgia. Oh boy. I have no proof but I sortof suspect that having bulimia from my teens into my 30's has done more than ruin my bones. I think that 18 years of starvation ruined my nervous system and I am reaping the bitter results. I am taking a new supplement Metanx to see if it helps.
The docs have tried just about everything under the sun. I cannot take any of the old school anti-depressants or anti-anxiety meds because I began to have symptoms of narcolepsy while on them. When I woke up behind the wheel at a busy intersection, it put the fear of God in me. I cannot take SSRIs or SSNIs. I cannot take Lyrica. Wellbutrin actually caused psychosis!!! No lie. Voices, hallucinations, the whole nine yards. The teeth clenching from trying to take Cymbalta caused me to lose teeth. I can take Neurontin and I can take Vicodin. After all these years, I have built a tolerance to Vicodin but I am afraid of asking for anything stronger. I hope to live many more years and I fear moving up the pain drug ladder too soon. Or is that silly?
Sorry to be so long winded. I just am so glad to find understanding souls "out there"! Unless you have it, you don't know what chronic pain is like. It's an invisible disability. Even those closest to me seem to "forget" that I am not the woman I was 15 years ago and that I cannot do what I once could do. And they don't realize that just because I am not complaining or sobbing does not mean I am not suffering. Chronic pain is a lonely place sometimes. Thanks for listening!
Huh! I think I should print this out and show it to some of my DOCTORS!!!
I used to NEVER use "10" .. I would sometimes use 9.5, but never "10" because I figured "10" was like the headache pain you feel just before you die from an aneurysm, or like the very worst sort of prolonged physical torture I could imagine. My doctors would always look at my pain diaries and say "Why didn't you get out of bed on this day? You didn't rate your pain level very high." And I would say "Yes I did, that is what that number means!"
Or, I would go in and say "The headache I had the other day, it was honestly worse than any headache I've ever had before. I was screaming for hours. I thought my head was going to explode. I can barely describe the pain. I can't even imagine the pain anymore, I can't imagine how anything could be that bad now that I'm not experiencing it anymore. None of the pain killers touched the pain. I had to go to emergency because the pain wouldn't stop and it was just so severe and I'd be crying and then screaming for hours and I started banging my head against the wall because... I don't even know why, I just wanted to get out of pain. It was like I wasn't even me anymore. I think I could have killed myself to get out of that pain. I'm afraid if pain like that ever comes back again that I might kill myself." My doctor (a previous neurologist) stared at me and said "Why did you rate that as a 9?" and he sounded extremely frustrated, "isn't that a 10?" And I said "But there must be worse pain in the world, and 10 is the worst pain. I have migraines, you said so. Cluster headaches are supposed to be worse than migraines. People with cluster headaches must hurt more than that. I don't understand how but I don't even understand how I could have hurt as much as I did, and I did, so I know it's possible. And there are horrible evil people in the world that do horrible evil things to people, and I am sure those evil things are more painful then what I went through on the weekend. And, I know that a sudden severe headache that is the WORST headache possible means you have an aneurysm and then you die and I didn't have an aneurysm and I didn't die so that must not have been the worst pain possible. So, no, I have not experienced the worst pain in the entire world. But, I experienced the worst headache of MY life and I told you that and exactly what it was like in detail so can you just accept THAT??" And he said "The details aren't useful to me. And why are you talking about wars and other medical conditions and all these other people? You've completely lost me. I just want a number. Just write TEN next time. None of these numbers you're putting down right now make any sense at all."
I started to HATE the pain scale after that. I switched to a 1-2-3 system (mild, moderate, severe) because it was easier for me to use. And, when a headache is the worst I've ever had before (it happens from time to time, and it's always terrifying when it does), I note that, because it's the only thing that seems note-worthy to me anymore.
Maybe if I'd had this before to SHOW the doctors every time I had to tell them what level my pain was... maybe then I wouldn't have grown to absolutely despise the pain scale so intensely.
I believe it means the worst pain you yourself has experienced. Otherwise it would not be a good estimate as you can never personally know what it is like to be in pain from say having your leg cut off without medications.
Base it on your experiences that way it is an accurate account.
This sort of confusion between doctors and patients of the type marileew has expressed is something that can be sorted out, but only if the doctor is willing to participate as well. A doctor surely should attempt to help arrive at some consistency of a rating scale with patients by explaining what they want at the beginning, rather than leaving the meaning up to guesswork. I have seen articles in the medical literature that discourage the doctor from assigning some type of ordering, insisting that most patients give consistent scores; if doctors read - IMHO erroneous - advice like this it isn't likely to be helpful for the patient.
Thanks again for the pain scale, Red931.
Thank you so much for posting this pain scale. I've always had such a difficult time explaining to people the type of pain I have but at least now I can tell them how much I'm in and be more accurate. Based on this scale the highest I've experienced is an 8.5-9. I will print this out if you don't mind and show it to the docs I see that are always questioning wether or not I feel what I say I do.