Pain
They walked in the darkness of that lonely night with shadows all about them, through the empty halls of Dis and his desolate kingdom.... Aenis' descent into Hell, The Aenid.
Ibant obscuri sola sub nocte per umbram, perque domos Ditis vacuas et inania regna....
Before we begin…The Disclaimer….The information in this newsletter is purely for information purposes only and in no way is to be used as medical advice. I am not, nor am I holding myself out to be a medical professional in any way. This newsletter is purely from my own experience as a patient and a sufferer of chemotherapy induced neuropathy and chronic pain. Always seek advice from a qualified medical professional and do not delay in getting your symptoms checked by a qualified medical professional.
The Sibyl’s Cave to the Underworld. Photo by Carole Raddato from FRANKFURT, Germany, CC BY-SA 2.0 <https://creativecommons.org/licenses/by-sa/2.0>, via Wikimedia Commons
And so we descend into Hell. There was your life before the pain and there is your reality now, constant pain that roams and eats at your body in a never-ending diabolical feast. Have you ever seen the paintings of Hieronymous Bosch? They remind me of pain.
Hellscape from The Garden of Earthly Delights by Hieronymous Bosch, Museo del Prado
In the artist’s famous hellscapes, humans are tormented and tortured by demons in a myriad of ways. In the paintings, you can see the demons at work, a creature’s razor-sharp claws digging into a person’s arm, another man being pierced through the spine on the strings of a harp, a demon blowing on a hellish instrument into the ears of the suffering man, the learned figure (medical knowledge too late?) in blue sitting on the person’s (patient’s) back…maybe Hieronymous Bosch had neuropathy? He certainly knew how to depict pain.
However, we are not part of a mythical world where there are demons in view. Instead, here on planet Earth, no one can see your skin burning, no one can hear the ringing in your ears that’s enough to drive you mad, nor can they perceive the itinerant stabbing pain in your limbs, nor a stiff neck, nor a scalp that feels bruised, nor perversely the numbing tingling that falls down one side of your body, nor the interminable itchiness that makes you scratch until your skin bleeds. The trouble with your gait and grip just make you look clumsy. The holes in your memory, foolishness. The same for your inability to find your centre of balance. The nightly ever-present thirst of dry mouth is imperceptible to both family and doctors alike, nor can they feel at 2am in the morning your fervent desire for sleep robbed by insomnia.
No one can see your pain.
Your family and friends are sympathetic, but what can they do? After a while they get used to your complaints. Of course they do. But do you? How do you learn to live with pain? How do you remove yourself from its demonic grip?
My first good piece of advice is to move. Even though you just want to stay in bed where you feel safe and protected. Move. Even just a few small steps if that’s all you can muster. Life is going to go on and you need to find ways to make it as normal as possible.
In my first three years of pain, none of the doctors gave me any way or even warning as to how to manage the pain killers, opiates in my case. If not carefully managed, painkillers can lead to tolerance and overdose. Don’t get me wrong. Opiates have their place in the chronic pain patient’s world and the recent uproar about the spate of overdoses in the United States does not justify taking them off the list of medications for chronic pain sufferers. Sometimes, opiates are the only medication that works. For others, the other options are antidepressants and antiepilectics/antiseizure medications. (Click on the links to read about these if they are of interest.)
What I have learned is that there is no one single medication out there that is a one size fits all. We are all unique and so are our reactions to medications. Given the recent bad press about opiates, my doctors have made me try an array of antidepressants and antiseizure medications over the past six years. All of them gave me terrible side-effects. Indeed, you’ll find entire Facebook groups dedicated to denouncing the side-effects of some of these medications. The only medication, in my case, that keeps the pain to bearable without debilitating side-effects, is opioids. If that is what your doctor prescribes for you and that is what works for you, be aware to manage it carefully!
If you don’t manage these medications carefully and ensure the dose remains stable, they will have you barely cognisant, unable to do anything much but sleep. Your body puts on weight, (I put on 15 kilos) and worst of all the pain does not decrease, it is an endless vicious cycle. Many people may be unaware of all the different side-effects. However, there are other options that will help you decrease the pain that are not medications and they may also even assist in decreasing any negative side-effects of the medications you are on.
So please, get up and MOVE.
The next thing that worked for me is to seriously consider looking at your diet and lifestyle….there has been a lot of research and press these days about the effects of:
anti-inflammatory diets
fasting and the effects of autophagy
exercise and physiotherapy
stress reduction eg meditation and
pain distraction methods
psychological support either individually or via support groups
If your pain is chronic, you may already be sliding into central sensitisation syndrome. Here’s Dr Sletten’s video again if you want a reminder about how this manifests itself in your body.
Here is the biggest lesson I’ve learnt so far. There is no magic fix and there is no doctor with a magic pill that will cure you. It comes down to being as persistent as your pain in finding what works for you. You need to rely on yourself to seek your best health care. You cannot blindly trust anyone else to find you a magic pill, or any other type of quick and easy solution. In my experience, treating chronic pain is incremental and requires a consistent, steady approach.
Trust in yourself. First and foremost. You will improve. Many others have done it, why not you?