You know when you tell a doctor you’re in pain, and they ask you what pain number you are? They usually ask you this question without any kind of terms of reference,or pain scale or guide. Which renders the question utterly useless. How can I give a number, if I don’t know what each number means to the doctor? Because he or she is the one who is going to decide on my treatment based on that number, but I don’t know what that number will mean to them.
If I say a number that’s too high, say a 9, they will think I’m a hypochondriac, or a drug seeker. If I err on the side of conservative, say a 6, they won’t treat my pain, because its not bad enough. So I land on 7 a lot. Knowing that 7 is the most popular number, and is absolutely meaningless.
So a pain chart with definitions is essential. I keep this one in my bag. There are many good ones, but this is the most concise. I want to get it printed on card and laminated. That’s how often I’m asked a question which is completely pointless if you’re not working from the same definitions:
0 Pain free
1 Very minor annoyance-occasional minor twinges
2 Minor annoyance-occasional
3 Annoying enough to be distracting
4 Can be ignored if you are really involved in your work, but still distracting,
5 Can’t be ignored for more than 30 minutes.
6 Can’t be ignored for any length of time, but you can still go to work and participate in social activities.
7 Make it difficult to concentrate, interferes with sleep, you can still function with effort
8 Physical activity severely limited. You can read and converse with effort. Nausea and dizziness may occur.
9 Unable to speak, crying out or moaning uncontrollable- pain makes you pass out
10 Unconscious. Pain makes you pass out.
Most people live at 0. 0 is a normal place to be. Pain free. It is normal to be pain free, hard as it is for those of us with chronic pain conditions to remember or realise.
It’s not that uncommon, especially as you get older, to experience 1s and 2s and maybe even 3s quite regularly. But normal people will experience 6s or 7s rarely.
I live at 8s.
‘Physical activity severely limited. You can read and converse with effort. Nausea and dizziness may occur. ‘
Sounds like a typical day to me. And that’s AFTER I’ve taken my opioids.
Imagine where I’d be without them. I don’t have to imagine. I know. Its 8.5 to 9. I have passed out from pain, but that is very rare.
When I say I’m having a good day, I’m at a 7. About three times a year I have a 6. And when I do, I feel euphoric. I run. I move. I revel in a low pain day.
That’s a 6. A 6 is what I call a low pain day. When normal people hit a 6, they are generally writhing in pain and complaining. It is all relative! A 6 is terrible for normal people. It’s bliss for me.
My doctor said he’s going to wean me off opioids. I’m not sure how, but I have to fight this.
Whatever happened to informed consent? I have been informed of the dangers of opioids, much as I was informed of the dangers of the other drugs I take. And the other drugs I take have far more potential for harm. I cannot conceive of doctors who are too short sighted to see that.
Of all my problems, potential addiction is the LEAST.
Firstly, because its ‘potential’. Being that I have been taking opioids daily for around 5 or 6 years, and have not become addicted, I don’t see it as a serious risk. The ‘risks’ opioid addiction are competing with are already happening. They are real. So excuse me if I’m not concerned about opioids.
The other drugs I take have side effects including cancer and death. And they are about as likely as me becoming addicted and holding up pharmacies to get my fix.
Yet I get the choice as to whether to take those drugs. In fact, I am pressured to take those drugs. But I am not grown up or mature or educated enough to be given the choice to take opioids. Because I don’t understand the risks and doctors need to manage that for me.
The hypocrisy is unbelievable.
I have to fight this. I don’t know how. I am far from the only one. It’s going to take more than an online petition.
Yesterday afternoon I got to a 9. All of today was a 9. I took opioids, simple paracetamol and I even took some Naprosyn. Which I am not allowed to take. But today I needed it. New rule – no Naprosyn unless it’s a 9.
I took the risk. Side effects vs benefits. It could be argued that anti-inflammatories are more likely to cause harm than opioids. Certainly to me with poor kidney function and high blood pressure. But the pain was so severe I would have done anything to make it stop. So I did. I took some Naprosyn and it helped a lot. I’m surprised at how much it helped, in fact.
I might take it again tomorrow, but no more than three days. My rule. Self-imposed. My stroke risk is high. I’m not going to push it. But I need some pain relief. Severe pain is unbearable. It’s not just that it wracks your body, you can’t think. It hijacks your brain. There is nothing left of you, there is only pain. I doubt any of my doctors have ever experienced a 9. I bet if they did, they would prescribe themselves an opioid.
I live at 8s.
I manage, with oxycodone. People don’t believe me, because I smile. People don’t believe me, because they don’t believe that anyone could survive at 8s and look happy and healthy. (For the most part I am happy. I am never healthy. The two things are NOT related.)
I can’t live at higher than 8s. Because above 8s there is no room for life. There is only pain. I am not weak. I can demonstrate in many ways that I have a high pain tolerance. But doctors won’t listen to that, either.
They just tell me that oxycodone is bad, and I can’t have it any more. Probably because some bureaucrat who has never hit higher than a 4 has decided it must be so. But they will taper me off safely.
Ridiculous. I can stop my oxycodone with no ill effects, except that the pain is unbearable. I haven’t experienced withdrawals yet. But they can see me only through the lens of addiction. But addiction is one disease I do not suffer from. And there is no tapering me safely from oxycodone. There is only condemning me to living with intractable pain.
I don’t know if they really still say the Hippocratic Oath. I don’t know if the first law is ‘First do no harm’ or if that’s just folklore.
What I do know is that NOT treating severe pain IS doing harm.
And maybe, just maybe you’ll reduce the addiction statistics if you take opioids away from those who need them, but you will most certainly increase the suicide statistics.
“First do no harm”[edit]
It is a popular misconception that the phrase “First do no harm” (Latin: Primum non nocere) is a part of the Hippocratic oath. Strictly speaking, the phrase does not appear in the oath, although the oath does contain “Also I will, according to my ability and judgment, prescribe a regimen for the health of the sick; but I will utterly reject harm and mischief”
I found this Neen. I am in the UK and am disgusted by this refusal by so many doctors in the States and where you are to refuse to prescribe narcotics or to greatly limit the doses. To my mind a doctor should know very well their chronic pain patients and be doing their utmost to treat said pain, not judging everyone based on those who do abuse meds and we all know it goes on, but we as chronic pain patients need help and understanding and the right meds to be able to ‘function’ on a daily basis, even then the level of function is far less than a normal healthy person. I run a support group for AI and RAD & I see so many people who are denied the correct treatment because Doctors are scared to prescribe. I am lucky here, so far anyway, that my GP trusts me to use my pain meds correctly & she knows that they help me. I’m not turning cartwheels by any means but I can do the necessary each day, I have a level of function. To take that away to my mind is to cause harm & things need to change. We don’t limit the sale of alcohol because there are alcoholics so what’s the difference?
I agree completely Gillian! There will always be addicts, but some people will never become addicted. There is no shame in addiction, its just another risk to be managed. For most people, the risk is low, and yet all pain patients are treated as high risk. It doesn’t make sense. I hate to be all conspiracy theorist, but there has to be more to this. Why deny people a drug that allows them to function? Where is the evidence that long term use is harmful? I have been digging out studies and the only ones I can find say that the risk is low. I’m glad you have a doctor who understands you’re a grown-up and can manage your own medications, so that you can have a semblance of a life. I hope nothing changes in the UK. Here in Australia we are fast going the way of the US. All of my doctors are very anti-narcotics, even my pain management doctors want to change me to other medications. Why change drugs that are working for me? Or working as best they can, anyway. We’ll never be pain free, but narcotics do help.
There is a lot of discussion in the US lately since the FDA came out with a statement that too much oxy is being prescribed . They I heard from. Lot of people that there Drs are saying they were going to ween them off of oxy…….are they speaking of oxygen, because is kinda the same thing. We are adults, we have many responsibilities in our life. And the only thing I can see happening from this is the pusher on the street is going to be getting anew stream of clients.
I read the FDA statement, and the CDC’s recommendations. They keep referring to overdose statistics, but they don’t differentiate between the opioids, legal or illegal, prescribed or bought on the street, and whether the person suffered chronic pain. They need better and more open statistics, and I agree, they will only push people to other drugs and illegal channels. Or condemn them to a life of suffering.
I really cannot understand the position of FDA and other in the States when prescribing Opioids. I live in Germany and my GP knows that I will never misuse the Opioids and she is prescribing without any doubt. I don’t take them regularly anymore, only when I need it. In my case that is during a flare or if I got a severe infection and I cannot (shouldn’t) take the Rheumy meds (I’m usually on Enbrel, and part time Prednisolon). There are working days where I would need to be on sick leave without Opoids – like today.
Thanks you for sharing and have a nice weekend on low pain level
Anke
You make another excellent point Anke. For the vast majority of chronic pain sufferers, opioids allow us to be more productive, and even hold down a job, whereas without them the pain would be too great. Yet the FDA and CDC continue to push the view that all opioid users become addicts, and all narcotic use is bad. Many people are already suffering more than they need to, and that’s only going to increase 🙁
I’m like you I’m in chronic severe pain every day, I’m about an 8 quite often. I live there…. So I can completely relate. I’m on two different types of pain meds and they really don’t help sadly. I’m seriously considering moving somewhere where I can try cannabis. I won’t smoke anything, obviously that and RA wouldn’t work well together. But at this point I’m open to things, especially things that aren’t going to kill me like all of the RA medications. There are proven statistics that death rates in states (in U.S.) where ppl use cannabis verses opioids are a lot less. I also have stage three liver disease, so these pain medications are just killing me anyways quicker than someone else. So I really need to think outside the box of opioids. Although right now, I live in a state where cannabis is illegal, and I can’t afford to move. So my options are limited…. I hate the pain medications, but I hate the pain more. If I didn’t have it I would be suicidal because the pain gets that bad, if someone said they were taking them away Idk what I’d do…. So I don’t understand why they’re taking yours away when you clearly need it… This is wrong, and maybe a petition should be started!!! This is just going to create more stress for you, the stress will create more pain, more inflammation, etc. It’s not like this is going away for you… Idk what the laws are over there on cannabis or what your are or aren’t willing to try for pain control, but I’d definitely be doing some research. Don’t think of it as a drug or a gateway drug, please do some research on it, it’s helping so many ppl, and you don’t have to smoke it… I use turmeric daily too, it does help, but obviously I’m still in a considerable amount of pain most the time, so that ISN’T going to work alone, I WISH, it’s just something that helps a little for me, some ppl it helps more. I do turmeric milk, and I put ginger in it, I fill a glass mug up, put fresh ginger in, warm it in the microwave & use organic turmeric powder(fresh turmeric would be best) stir it up & drink it daily, twice a day is best. I use ginger, too, I grind fresh ginger up, my son will help me on days I can’t and I’ll make tea out of it, with honey. I use essential oils. My doctor gave me this stuff I rub on my joints that’s anti inflammatory, it really helps, wish I could bath in it! O.o I’d just just love to talk to someone like you, sounds like you need support. I also have a son with aspergers/autism he’s 22 now, all grown up. I have a grandson who we’re pretty sure has it too. So you’ve really got a lot on your plate. You hang in there…. I’m sure those kids keep you hanging in there. I’ve had chronic pain since I’ve was in my 20s because of spinal issues, but the RA diagnosis has been fairly recent. It’s literally torn my life apart, time just crawls by, made me wish for just my spinal issues back. I spend my days researching everything about this disease. My RA is progressive. So it’s really fast moving. I’ve enjoyed reading what I’ve read of your blog. I’ve considered starting my own… oh goodness hahaha…. Could be fun while I’m laying here writhing in pain! Or I could write about hitchhiking across the country on a stretcher to get to a place I can use cannabis!!! Now that’s a mental picture….. jk ::) Also before I forget, there’s this stuff called Kratum powder that ppl use for pain. It’s legal in some places & illegal in others. Research that, ppl say it helps. I’ve never tried it, but it could be an option for you. Don’t give up!!! I know easier said than done & I can’t even begin to imagine what you’re going through…. I just want you to know that I feel for you, this shouldn’t be happening…. I’m outraged for you and wish I could help. So I hope nothing I said offended you, I was just trying to offer advice even if it’s advice you can’t or would never consider. Sending you & your kids love & healing light, may you be wrapped in it’s healing warmth. Much love, God bless.
Hi Rebecca, I really appreciate your advice. I would definately try cannabis, its not legal here yet though. So, like you, I’m waiting for the politicians to catch up! I have read a lot of good things about it. I hope your state legalises it soon, and you can try it. and of course that it helps!!! I think you should blog – its an excellent way to get your feelings out. And connect with other people in the same boat…we have a lot in common. Aspie tendencies sure do make life interesting sometimes…but my kids do keep me hanging on. And living firmly in the NOW, and not thinking too far ahead. Right now looking ahead is overwhelming. But I’m up for the fight. Having a reasonable, intelligent discussion with my doctors and seeing what else they can offer if they think its OK to take my pain relief away! I’m really sorry you’re in so much pain. I hope you get some help soon. Best of everything to you and thank you xx
Rebecca although I have not use cannabis yet for my RA pain I am open to it that is for sure. I hope your state has made some changes. I am in CA and everyone and their cousin grow marijuana now. It is so abundant people give it away freely. Most massage therapists will ask if you want a cannabis tincture. I had a conversation yesterday with a police officers partner about her joint pain and cannabis with the officer in the room (initiated by the RA partner). It is just plain accepted here. I am sure at some point I will need to give it a try as I am new to RA. But I hope your state will make a shift ASAP! BTW what is the topical your dr prescribed that works so well for you? Thanks in advance for your response.
Such an insightful article. I’m in Australia and live with chronic pain from 2 failed hip replacements in my left hip as well as neurological pain due to nerve damage. I take oxycodone on a daily basis as well as muscle relaxants and have discussed the possibility of addiction with my GP. She understands my need and largely leaves it to me as to my dose but cannot offer any alternatives which is frustrating.
The pain scale as you describe is spot on to me and I live, on must days in the 7-8 region and dream of a 5 or less day.
Thanks so much for this article. It makes me feel not so alone
I’m sorry you’re in so much pain, Bill. I hope that the medication offers you some relief, but clearly it’s not enough. Another misconception is that opioids just make us all high and pain free. Er, no. Is there any chance of a hip revision surgery? Bottom line, there is no good way to treat pain like yours yet. I’m glad your GP allows you the medications you need, but I know that opioids are unpleasant drugs, and I wish there was a better solution as well. I have been reading about research into new pain killers that don’t have the same addiction potential, supposedly. I wonder about other side effects, as they are just as important. Best to you, and hang in there.
Thanks so much for your reply and kind wishes. I was offered revision surgery which would have been the 3rd in 20 months. The risks were unbelievably high – 50% chance of no improvement in pain, 50% chance of dislocation and/it ossification of the joint and 90% chance of worsening my neurological pain from nerve damage. I decided it was just not worth it. You’re so right about the opioids misconception – oh you must be fine when you take them. Wrong, I feel like I have a head full of cotton wool and all they do is dull the pain slightly to a more manageable level. High: huh I wish!!
I would be very interested in investigating other pain management initiatives but as you say, what side effects do they carry?
Take care and I’m really enjoying reading your blog. Kind regards to you, Bill