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.