Living With Chronic Pain: One Person's Story

Today's post from lgbtnetwork.eu (see link below) is an honest personal account of a man living with chronic pain. His medications tie in with those used to control neuropathic pain and his story will resonate with many people living with severe neuropathy. Sometimes, reading about someone else's experiences with daily pain and discomfort can really help to put your own situation in perspective. Just knowing that you're not alone is both comforting and supportive because many neuropathy patients can become introvert and lonely in the belief that they are the only ones suffering this way. So reading this while drinking your coffee and reaching for the pills, may cheer you up just a little.
 

Chronic Pain: The thorn in my side
By Rob McDowall / 5 July 2013

Pain is something which most of us experience at some point (usually various points) throughout our lives and according to the British Pain Society (BPS), almost 8 million people live with chronic pain in the United Kingdom. Chronic pain is defined as pain which has lasted for over three months and can come on suddenly following an accident or injury or gradually over time without an obvious cause. Sudden and unexplained pain is usually categorised as acute and we all know Doctor’s and physicians love their labels… most people wear a few different labels on their pain journey and some may find they wait a considerable period of time for a definitive diagnosis of the cause of their pain. Research carried out by Pfizer concluded that, on average, chronic pain patients in the UK wait for 6 years for a diagnosis and treatment which is twice that of our cousins in Belgium and France.

Pain comes in all shapes and sizes and can range from the niggly pain of a headache to the stabbing, cutting pain of damaged nerves or a damaged spine. No two people are the same and the medication one takes to relieve or alleviate pain differs considerably depending on the type of pain, the lifestyle of patient and a range of other factors around the suitability of the drug or treatment for the patient and their ability to tolerate the treatment. In some countries (America being the most prevalent) cost is also a major consideration with patients being faced with a weighing up exercise concerned with obtaining the greatest pain relief with the smallest financial outlay.

As someone who started their pain journey in early adulthood I have tried many treatments ranging from the normal paracetamol and NSAID’s to opiate analgesics on a graduating scale from co-codamaol working up to buprenorphine and fentanyl transdermal patches. I have lidocaine patches, had medial branch block injections into my back and have had physiotherapy so many times I could have written the textbook. My TENS machine was never off and I suspect I single-handedly assisted the sales team (sorry… nutritional advice team) at Holland and Barrett to achieve their sales targets with my desire to try just about anything which would or could be said to have any remote effect on pain, inflammation, irritancy, mood etc. I wear my patches with pride and have come to accept that my pain is here to stay.

Acceptance was one of the most difficult stages to get my head around, I mean who is going to eagerly accept that, as young guy, pain is going to affect and indeed control their life on a daily basis? Pain whispering in your ear every minute of the day, on your back, unshakable and with a thirst for your energy and any bit of self-respect lurking within you. Pain is a bastard and relentless pain robs you of your life and any enjoyment you can derive from it or any enjoyment you may be able to even think about having. I used to wake up in the morning, fight it, cry, fight it, cry, swear a bit, cry a little more and obsessively search for something to take away my pain… that magic fix, that miracle of science to effectively put an end to my constant and punishing pain. Alas, I am more mature and realistic now and swear a lot and spend most of my online time asking my friend Google for jokes, videos of cats and other non-pain related offerings.

Pain management is a journey and I now understand fully that it’s no longer about becoming pain free or rediscovering the pre-pain Rob, it is about accepting the pain is there, discovering your limitations and respecting them while trying to live something resembling a life. Life isn’t perfect for any of us and regardless of how we view our neighbour we all do have our crosses to bear and what is manageable for some may be completely unmanageable and punishing for others. I learned pretty quickly that to feel sorry for one’s self is nothing but a waste of energy and time and one is better to try to do whatever can be done to help or assist those around you who cannot see what they can offer the world and try to get something positive from your pain!

Anyone living with chronic pain or with someone with chronic pain knows only too well how frustrating and anger inducing the journey and each step of it is. Attending your GP (family doctor) and consultant and trying to convince them that you are in pain is difficult enough but try to get a diagnosis or some form of effective treatment and one will find oneself in a parallel universe where the doctor is only too happy to consign you to a life of addiction, insomnia (or chronic fatigue), inability to work, irritability and other co-morbid nasties rather than spend the time to get to know you, your pain and offer some form of treatment which will help rather than hinder you on your pain journey. The problem is… GP’s and consultants have so little time and rather than invest the time and money into taking chronic pain patients out the ‘one-size-fits-all’ system and dealing with us holistically in specially designed programmes, Health boards and local health authorities would rather keep us on the conveyor belt of misery and damnation while squeezing our cheeks and tickling us under the chin occasionally before popping us back on the belt… They know we are in so much pain and we are so tired that we will be compliant and we won’t argue back.

The journey for each of us is unique… we may pass the some of the same signs and drive up some of the same roads but our journey is ultimately unique and my experiences are only here to show you what I do to help to try to manage my pain. If you are in chronic pain you should speak to your doctor and should not stop or amend any medication or treatment or start any new treatment or medication without speaking to them firstly. Your doctor is your doctor and even if you feel they do not fully understand your condition you need to give them their place and do not take any of what I say or share as medical fact or medical opinion… it isn’t, I have a Doctorate in moaning and procrastinating – not medicine.

What I do to help manage my pain

I take a number of medications for pain throughout the day including transdermal buprenorphine patches, lidocaine patches, dihydrocodine, paracetamol (as it makes my patches work better apparently), duloxetine and amitriptyline.

Aside from the aforementioned analgesic cosh wielded, my pain toolkit contains two TENS machines, hot and cold pads, a pain clicker (which looks like a massive biro which clicks and fires out a spark when pressed) and my trusty juniper creations which, Tommy, a good friend of mine blended for me. Also kicking around in my pain box is a few cheap Poundland notepads and even cheaper pens which never work!

Sometimes I respond to heat and other times to cold and I like to have the choice. My pain clicker was about £10 from a local pharmacy and according to the box it works on the same principles as TENS by sending out a spark into the area I put it… the spark (caused by a flint inside the device) blocks the pain signal by bombarding the nerve with a competing signal. Turning to juniper, now, a friend of mine Tommy is a guru at all things holistic and natural and understanding my condition he recommended I try adding juniper to my bath or use it in a lotion or cream to help reduce my pain. Now I am not a sceptic and I am not a take me by the hand and do as you please character either but I thought I would give it a bash. Tommy made me juniper drops to add to my baths and made some cream containing juniper which I could rub onto my skin to help deliver juniper topically to the site of the pain. I have used the drops and the cream for a couple of months and I must say it really does help me. The juniper oil added to my bath reacts with the warm water and not only does it smell lovely and makes my skin soft, I actually do feel it afterwards and it does reduce my pain and associated discomfort. We are not talking about numbing the pain or taking great strides down the pain scale but a noticeable difference, enough to justify my continued use and religious application and use of the product. There is some information online about juniper and its use in pain here, here and here.

I use my cheap notepads as pain diaries and as a means to scribble down my thoughts… keeping a track of how you feel is important as when you see your doctor or those involved in your care, pain diaries help you verbalise how you feel and ensure you don’t forget to tell the doctor about things which make your condition better or worse. I have a polka dot notepad which has lots of half written poems, drawings, stories and doodles and acts as a way of me purging my thoughts from my head onto paper and this notepad would probably get me committed or sectioned under the Mental Health Act however, it’s a dumping ground… a safe and courageous space for me to empty my thoughts and commit them to paper, the theory being I will ruminate less and will have more space to think about other, more important things, at least that’s the plan.

Pain is as much a part of my life as the colour of my eyes and the size of my nose… it is here to stay and the sooner those living with chronic pain accept that, the less turbulent their journey will be. I think it’s something one has to keep at the fore. It can’t dominate, it can’t control but it must advise your life and the things you do otherwise you will crawl from one bad day to the next in an everlasting, perpetual cycle of pain and misery with an overriding sense of missing out seeping through each day. Pacing is a must and for those not enlightened to the dark art of pacing there is some information here and here which will help you get your head around it and its logic. You aren’t superman and regardless of how old you are, how many kids you have had and how much spinach you eat, if you are a chronic pain patient then chronic fatigue (m.e) usually comes hand-in-hand… feeling pain 24/7 is tiring and by goodness can it zap you!

The internet is awash with information, guides, tools and self-help materials which will help you get a grip of your condition and how it affects you… I have listed a few different sites which contain some useful information, help sheets, tools etc which may be of use to those living with chronic pain and their families. I have, in the past, set up a private blogger account (completely private blog with no external access) and have blogged how I am feeling, how my pain was, what I did throughout the day which made the pain better and worse etc… that way I could print out my blog entries and take them to the specialist when it was time to see her. Keeping notes on a daily basis helps track the effect your pain has on your mood and other aspects of your life which may not be immediately obvious on-the-spot in the doctor’s room.

https://www.lgbtnetwork.eu/chronic-pain-thorn-in-my-side/