Tag Archives: pain

Multiple medications coming out from a pot

Trying new medication update

This blog follows on from one I wrote recently about Weight up the benefits of trying new medication for the severe chronic neck, back, shoulder and arm pain I experience due to spondylosis and fibromyalgia. Short story – it didn’t go well, I was that 1 in 10 who experienced side effects.

Longer story

The medications I tried were a muscle relaxant and an anti-epileptic drug to treat my neuropathic pain. Both of these had a fairly similar side effect profile but had been recommended by my consultant at the pain clinic so I was hopeful.

I titrated both medications up each week and started to feel some benefit. I kept a really detailed diary of my symptoms and possible side effects. Given that the side effects are really similar to the symptoms I suffer day-to-day, it’s very difficult to tell the difference but I had a couple of awful experiences.

At the highest doses I reached I actually started to feel so dizzy I fell over a couple of times and was so sleepy during the day I was falling asleep at work. I considered pushing through because sometimes side effects like this only last a short time and wear off but I couldn’t function so I reduced the dose and realised that at the lower dose, I wasn’t feeling any pain killing benefit.

The worst adverse effect I had was when I had a teeny-tiny glass of wine, I experienced feeling drunk for the first time in my life! Let’s just say, my mind-body connection wasn’t functioning as it should – not something I will ever repeat willingly.

It’s really difficult to have experienced such an adverse reaction like this. Before I had a drink I didn’t feel particularly sleepy so thought a tiny glass would be ok. I rarely drink so I’m always carefully not to have very much. Within about half an hour I was fast asleep and as we were at a friend’s house, my husband had to help me home as I could barely walk. Fortunately, my friends were incredibly understanding and it was a simple case of sleeping off the effect.

It just shows trying medication isn’t as straight forward as thinking does it work or not? We put an extraordinary amount of trust in the pharmaceutical company to ensure they’re safe. These medications have been put under scrutiny in medical trials but new side effects can occur. (Interacting with alcohol is not a new side effect but a strong reaction like this will be very unusual.)

It feels like such a balancing act for me with multiple medical conditions to consider. I was worried about weight gain in my last blog. That turned out not to be a problem – instead, I was plagued with more fatigue, feeling unsteady, nausea and sleepiness that made daily functioning impossible. The trickiest conundrum was working out whether the symptoms were side effects or my fibro playing up?! The only way I knew in the end was that the symptoms improved when I reduced the medication. (But even then, it still could have been a co-incidence because my fibro symptoms wax and wane!) It almost felt like a game but there was absolutely no element of fun!

At the follow-up appointment my GP booked I explained that these new medications had been unsuccessful and I would prefer to be on higher dose opioids despite the bad press they get. She supported my decision because she could see how much pain I was in and having tried the less conventional medications, she agreed, paracetamol and opioids would be a valid choice for me.

There’s a lot of hype, particularly in the US about “the opioid crisis” because of their addictive properties but used correctly, under supervision, my GP believes I’m not in an danger. The side effects are also a known entity and we can manage them.

With the medication I take to prevent my migraines, it appears to work for about a week each time I increased it but then I would stop feeling the benefits. After increasing and increasing…at last, I seem to have reached a beneficial dose (and no noticeable side effects); I’ve only had 1 migraine in the last 2+ weeks… This is a massive improvement on getting them everyday!

We don’t know what someone else is going through

Someone recently said to me that they thought they managed tiredness better than I did. I thought this was an interesting observation and here’s why:

When they’ve had a bad night, not slept well, they feel pretty tired, exhausted even – they manage to get up, go to work and they’re only moderately grumpy. I’m not denying, they manage their tiredness pretty well.

Woman sitting up in bed with her head in her hands looking exhausted

However, they experience my tiredness making me very grumpy, fuzzy headed, lethargic, at times not able to string a sentence together and struggling to do simple daily tasks. What they don’t realise, what no one can understand, is that when my tiredness has got to this stage, I’ve come to the end of my spoons, I’ve borrowed spoons from tomorrow and probably the next day. I’m not just exhausted, I’m completely drained and I’m at a negative level of energy reserves!

Their experience of tiredness is my experience of normal. Even if I manage to sleep I still do not feel refreshed. Chronic fatigue means just that, I permanent state of exhaustion – everyday, I have to wade through thick fog but I function like anyone else. I go to work, I socialise and I go about my daily life and manage to hide how little energy I have. This is my normal, I’m completely exhausted every single day of my life but most people think I’m “fine”.

What this person experienced as me “not coping as well as” them was me experiencing an extremely debilitating symptoms of chronic illness.

Computer generated image of nerve cells communicating pain

I’m always intrigued by the question asked by physicians when managing pain. “Can you rate it out of 10? 10 being the worst pain imaginable and 0 being no pain at all.”. Some say child-birth is the worst pain and woman can experience, while others say renal colic is worse. Others would say nerve pain such as trigeminal neuralgia or 2nd degree burns are worse. I think most people would agree that many factors influence our experience of pain, such as how long we have to endure it and the outcome.

I have not experienced the pain the causes people to writhe in pain (such as renal colic) but I have experienced fracturing my spine so severely I couldn’t move and simply breathing was painful. Surely, the only conclusion we can draw is that one person’s experience cannot be compared to another?! (The physicians question is, of course, just a guide, and it is useful when assessing whether pain management is working.)

My point is simple – we may think we know what someone is going through, from their behaviour, we may think we know how they feel but we can never truly know. Don’t judge how someone else is coping against what you think they’re going through.

How do I believe in a God who allows suffering?

We are all too painfully aware of suffering and if we are touched by it we are bound to ask questions, we generally want to know why it’s happening?
If God exists, maybe there are a few possibilities, either:

  • he is not all powerful or
  • he is not all loving or
  • he just doesn’t care/can’t be bothered/is lazy.

I do not believe in a God who causes suffering, nor do I believe in a God who actively wants us to be in pain or sits back watching us in pain.
My experience
I have been to some of the darkest places on earth through suffering the torture of depression. At times, my mind was so broken that I could not see a way through the emotional pain so the only way it was going to stop was if I ended my life. Some people have experienced physical or spiritual pain that has taken them to a similar place.
I believe in a God who knows my pain, a God who experiences my pain with me. I am his child, when I’m in pain, his heart breaks.
I also believe God has experienced the ultimate pain of seeing his one and only Son be put to death for crimes he did not commit. And it’s by his wounds I believe I am free (but that’s another blog).
Illness and healing
When it comes to illness, the fact is, our bodies go wrong. What’s fantastic about our bodies is that they often get stronger as they heal. Healed muscle fibres are stronger, this would not happen if little tears didn’t happen.
When my mind was sick, I could have wished (prayed) for instant healing but I never did. When I could think rationally I knew the recovery journey would be worth it and make me stronger.
Our bodies are incredibly complex machines that require very fine balances to function, things will go out of balance for all sorts of reasons, some things we can control (and we chose not to at times), others we can’t.
Perfect isn’t so simple
Some could say that God should have made our bodies perfect and that they should not go wrong. Christians believe everyone of us is made in the image of a God and that we are all perfect in his eyes. Creating a “perfect” world is not as simple as is sounds. For example:

  • Would the body contain water? Vital for life as we know it but only a small amount is capable of drowning.
  • Would the body contain bacteria? Vital for digestion but can also cause deadly diseases.
  • Do we want a body that can experience pain? If we do not feel pain we would not withdraw our hand from the hot iron, nor would we know if we’d swollowed a fish bone.
  • We’ve been given wonderfully beautiful minds that have invested medicines and make great technological advances but we also use our intelligence to make weapons of mass destruction (WMD).

If everything was good and perfect all the time we would have no concept of good or perfect. How would we know things were good if we had nothing to compare it to?
Turning despair on its head
Some people are able to look at their disability or illness in such a way that it is a gift. To some this may sound very bizarre. It is a fact that mental illness exists, if I had not suffered, I would not feel passionate about raising awareness about injustices, stigma and discrimination. I have met a whole new world of people, some of the kindest and gentlest people I know. If I had not gone through therapy I would not have developed such clear understanding of how my mind works and my relationships wouldn’t have gained the benefits.
God as a parent figure
Some people find it helpful to think of God as a parent figure. Let’s consider the parent who protects their child from everything. These children are not allowed to play in the stream, they do not tear their trousers, they never graze their elbows, these children will not develop a healthy immune system. Children wrapped in cotton wool are not allowed to play conkers or tag, they do not watch upsetting TV programmes, are protected from anything that might hurt them physically or mentally and do not develop skills to assess risk and take responsibility for their actions.
My parents gave me opportunities to make choices, sometimes I have made wrong choices and these have harmed me, I have learnt far more powerful lessons from these times than if I’d just been told what I should and shouldn’t do. My Father God has done the same, I am glad I am free to take risks, to make mistakes, to learn and to grow. He has gifted me with free will.
Free will
God has overcome evil but he has given human beings free will to follow Satan if they choose to. God asks us to choose him but he cannot force us to, otherwise it would not be true free will.
So, if we accept that stuff happens, whether it’s illness or poor decisions, surely God can just put things right when they go wrong? The way I see it is that we would not learn to look after ourselves if someone else could automatically click their fingers every time we stuffed up.
Something God does offer, to help us through the tough times, is a unique relationships with him.
Who am I to say?
When we object to suffering we are suggesting that we have the right to decide what is right and wrong. But who are we to decide that our right is right and our wrong is wrong? One person’s right could be another person’s wrong. We’re all aware of the saying that one man’s terrorist is another’s freedom fighter. Even between my husband and I (who agree on most things) have opposing views regarding WMD (called a nuclear deterrent when we want to deminish their destructive nature). My black and white belief is that they are evil and every single one should be (safely) destroyed, my husband has more grey views, believing they are a political necessity (but would not have them in an ideal world). Who am I to say my view is any more right than my husband’s?
Perhaps we should take responsibility
When it comes to natural disasters, have you ever wondered why we build settlements on faultlines or in the shadow of a volcano? Why, as a world, do we allow the poorest of our world to live in the most dangerous places, meaning not only their homes but their lives are at risk? Why do we jump into action when the disaster happens, running crisis plans, blaming and getting angry at God for allowing it to happen? Why do we not act before the disaster happens? Why do we not use our intelligence and moral compass to declare dangerous sections of the world uninhabitable and make sure every single person in the world has a safe place to live?
I’m not saying it’s easy, nor do I have all the answers, these are just a few of my humble thoughts about how I make sense of it.
In conclusion I believe God chooses to use his power wisely, he does not callously decide some people will be in pain while others will be spared. When in the midst of suffering we may think things are simple but if we’re able to step back and consider the bigger picture, the subject of suffering is not as black and white as it feels. My experience is that God loves us so much, he offers himself as a companion in the pain, he doesn’t just watch us, he experiences it with us and carries us if we ask him to.
A broken world will throw trials at us, we have God given freedom to choose to go through our trials with him or without him.