Health Magazine

The Lupus Pain Scale and How I Live in Pain

By Cass
When you are first diagnosed with Lupus....or any disease I am is a game of numbers. Your doctors will look at a sheet of paper that will have a break down of numbers that dictate the future of your treatment, day to day life....pretty much the future of everything. Don't get me wrong, these numbers are important, incredibly so, but they are just ink on a page. What they don't tell your doctor is what it feels like to be you. As always I can only speak for me and what I feel, although I am sure I am not alone in how I feel. You get many letter through the door, more ink on paper, more matter of fact, none of which describe the pain. So what do you do? Well you Google the "Pain Scale" too have a look at where you fit in, you tell you GP, specialist, nurse, mother, daughter, father, friend, that you are at a 9 or a 4 or 0...whatever you are at it is all just numbers and everyone's 9 is going to be different. So I want to tackle this and create a more comprehensive level of understanding for everyone.
The Lupus Pain Scale and how I Live in Pain

So here is the pain scale I experience and to try and reference it against what some one else may feel...maybe this is the only way to visualise pain....maybe there is no way to visualise pain.

Firstly...I am scrapping number 0-4 they do not exist in my world! We shall start at the number 5!
Number 5 is the stub your toe and swear a lot every day I live with.

Stubbing your toe is a relatively nasty pain right, we have all done it and it's the sharp, take your breath away, I simply have to swear, kind of pain that is unpleasant and takes a fair amount of time to go away. Well as soon as I move, even the tiniest joint in the morning this is the type of pain I feel. Stabbing, throbbing, sharp pain like bones breaking. This is why I reach for the pain killers at 5.30am!
The Lupus Pain Scale and how I Live in Pain
This pain lasts all day, every step I take feels like the soles of my feet are broken, when I type this my hands are cracking and thumping with waves of nausea bringing ache....on and on...I could name more but frankly it's too depressing! However this is the reality. I have also noticed of late that I wince A LOT....I make this weird noise that is mildly embarrassing in work especially when you are only getting out of your chair! The good thing about this though, is that my tolerance to pain is really in I did a four hour calf tattoo and hardly flinched....I just simply know how to block out the pain now.
Numbers 6-8 is the if you talk to me I shall punch you in the face.

I am currently on an 8,so it's a great time to write this really because trying to describe a level 8 pain is not easy as luckily when you are done with it you forget the pain........THANK GOD!!! I have a severely damaged shoulder joint at the moment and an inflamed nerve in my neck...on the same side of course....sarcasm!
The Lupus Pain Scale and how I Live in Pain
Have you ever had a tooth abscess? Broken a leg? This is the equivalent of a level 6-8 pain. This kind of pain is almost unbearable, you think you cannot take any more, you need it to stop. You get grumpy with people because you just want to be left alone, Plus this kind of pain is exhausting in itself. The energy you need to live in this kind of pain is incredible, so it leaves you exhausted and often unable to focus. I have even caught myself bargaining with god to stop the pain and I am not religious, oh but I would do anything to stop it. Also nothing really takes the full pain away at this you smile, cry or shout your way through it.
Numbers 9-10+ is where you really find out just how strong you are
I read recently that Lupus is now classed as being more painful than giving birth and cancer. All I will say is that I now know how much I can stand in one go. A few months ago I went for a drink after work...I know it doesn't happen often.....and whilst I was out I experienced the worst "pain storm" I have ever experienced. My entire body, muscles, bone, skin, nerves, all began to hurt at the exact same time. It started at my feet and worked up from there and it was relentless. I thought I was going to pass out, I couldn't see it was blinding, I couldn't talk because I had to concentrate so hard on not dropping ot the floor and breathing....well that was not pleasant at all! It lasted about 10 minutes and trust me, that was the longest 10 mins of my life.
The Lupus Pain Scale and how I Live in Pain
Now I have been diagnosed with CRPS (complex regional pain syndrome) but that usually keeps me at a 5......this was a entire body didn't function. I went home straight after the pain left and I cried...I cried a lot for the fear, for the pain and because I had no clue WHY this was happening to me. I told my rheumatologist who threw more tablets at me, told me it was the Lupus and just something that happens.
This level of pain happens about once a week. I get warning when, I know it's coming and I can handle it, but it's not fair, it's the most pain I know my body can handle and one day I hope it ends.
Oh and don't worry I will be following up with a how to help yourself through the pain post....I just need to rest a little first!

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