The drugs don’t work; They just make you worse
Nicely put by The Verve and featured on their third album, Urban Hymns.
I explained exactly this to the Nurse as I sat in A&E in early September 2016, but she didn’t agree.
“Of course they work, you need to learn to manage pain otherwise you will be back here every week” she replied rather sternly!
So, with my fight against Ankylosing Spondylitis underway my next mission was to learn to manage pain, and I had got off to a very bad start.
In my last blog I eluded to the fact that I have suffered 3 setbacks since my diagnosis and this is my story about the first one of those.
I had been plodding along, taking the pills I had been prescribed during my initial consultation, and I was also being assessed for the new biological medication. I was hopeful for the future, especially if these new drugs slowed down the progress of the disease.
We had been on holiday in France where I had spent the best part of a week lying on a sunbed. I had done little or no exercise with the exception of an “afternoon stroll” along the beach for an ice cream. As Jamie and I run our own business, even though it was August, a quiet month for us, we still had some work to do and, sitting on my sunbed with my laptop, was not good for my posture, especially my neck.
My pain levels increased significantly during the latter part of the holiday and continued to get worse on our return home. Sitting at my desk in the office was impossible.
With Ankylosing Spondylitis, the pain is mainly inflammatory in the back as well as inflammation pain in the pelvis, neck, intestine, eyes, heels, and various larger joints. However, a different type of pain, called neuropathic pain can occur in about a third of AS suffers when the nervous system is damaged or affected by disease.
I am quite good at managing the AS pain and have got used to it over the years, especially in my back, hips and neck, but this was very different, I was in agony. If you’ve ever had an abscess on your tooth, think about how bad the nerve pain was before you visited the dentist and increase it tenfold. It was so bad I would sit on the floor and cry.
The other problem I had was muscle spasms which is also common in AS. According to The National Ankylosing Spondylitis Society (NAAS) the pain associated with these spasms can be sharp and intense, and people who experience them explain that they feel as if their muscles are moving beyond their control and I felt mine were in overdrive.
I also thought alot about the definition of pain during this period. Why do some people have a higher pain threshold than others? I don’t think I’m a wimp, and whilst I don’t like the drill at the dentist, I’ve always thought of myself as pretty tough. I was in an car accident in 2013 on my least favourite motorway, the M25. I was wiped out by a lorry and the car was a right off. I was perfectly OK (apart from being a bit stiff the next day) but the nice policeman commented that he didn’t see many people as calm as I was after such an incident (he was probably just being kind). I even managed to blag a lift back to Leatherhead in the tow truck with the damaged car on the back 😊.
Anyway, I diverse, I just wanted to demonstrate that I am generally not a wimp and cope well with difficult situations.
As a great believer in self-help I continued my research into pain. I learnt that the word “pain” comes from the Latin “poena” meaning a fine, a penalty so I was certainly paying a gigantic fine for some misdemeanour earlier in life. I visited my good friend Dr Google who found the British Pain Society web site which was interesting. I thought that if I understood pain better, I could learn to deal with it more efficiently.
I discovered that pain signals use the spinal cord and specialised nerve fibres to travel to our brain. This involves our whole body. It’s more than just a network of wires. These fibres also work to process the pain signals. All together they work like a very powerful computer and sometimes this computer can go wrong.
The messages get confused and the brain cannot understand the signals properly. It can lead to chronic or persistent pain, which can be very hard to repair; there was no reboot button and I felt my own computer system had completely blown up.
The other interesting fact I gleaned was that our feelings have an effect on our pain. If we feel angry, depressed or anxious, our pain will be worse, and I was bloody furious 😠
The opposite is also true. If we are feeling positive and happy, our pain can seem to be less. We are able to cope much better.
This demonstrated to me that pain is never “just in the mind” or “just in the body” – it is a complex mix involving our whole being and how our brain interprets the signals. This mix can change from one day to the next.
So, with all my research done, the current drugs not working and in terrible pain, I ended up at A&E with the nice nurse who told me off. I thought that by going to A&E I could FastTrack an appointment with my Rheumatologist. After seeing the nurse, I met with the consultant who prescribed Tramadol and Diazepam coupled with Amitriptyline. This would address the nerve pain and muscle spasms and get me back to some sort of normality.
On leaving A&E I think my first words were “well I’m not taking those”!
I did have some knowledge of these drugs. Diazepam was first marketed as Valium, part of the benzodiazepine family that typically produces a calming effect.
Mother needs something today to calm her down,” goes the 1966 Rolling Stones hit “Mother’s Little Helper.” “And though she’s not really ill, there’s a little yellow pill.”
I had grown up with some exposure to the damage drugs like Valium can do. As early as 1964, medical experts were sounding alarms about Valium’s addictive potential. What really triggered the ensuing backlash was the idea that middle-class, mainstream women were Valium’s best customers. A 1975 Vogue story, “Danger ahead! Valium—The Pill You Love Can Turn on You,” warned that the drug could result in a “far worse addiction than heroin”, which has proven to be true.
However, amongst other things, Diazepam does treat muscle spasms, inflammation and nerve disorders so I understood why it had been prescribed.
I didn’t know much about Tramadol, so my friend Dr Google stepped in to help me to understand how bad it was. Being an opioid painkiller Tramadol is also highly addictive. In 2014, it was classified as an illegal Class C drug; that means that on prescription it is legal, but taken illegally it is Class C. However, there is talk of it being reclassified as a Class A drug.
I quite liked the 3rd drug on my prescription, Amitriptyline. It’s an older drug, generally non addictive, which was previously used as an antidepressant but today is widely used to treat chronic neuropathic pain (pain due to nerve damage). I had taken it before when I had neuralgia in my face. However, that was 1 pill per day and my new prescription was 4 per day. Along with all the other drugs, I had completely lost count of the number of pills I had been prescribed that were going to poison my body.
Following the A&E visit, I lasted 2 days with my stubborn hat on. My pain levels were sky high and I realised that not only was I damaging myself but my family too. They were worried about me and I was making it worse for them as well as for myself. They were too kind to say so, but relieved when I came to my senses.
So there it is, my 5-day journey into drug induced oblivion had started and my brain was like the Bermuda triangle, information went in never to be seen again.
My next blog will cover those 5 days in more detail and how, for someone like me who hated pills, coped with the effects.
Thank you for reading my story, if you take anything from this blog, please remember the doctor is always right and don’t be stubborn 😊
Until next time x