The tide
has turned on chronic pain management.
Anyone who follows the media in any capacity will have seen this shift
particularly in regards to opioid medication with regular mentions of
addiction, and the harm it can do. What
generally is getting left behind in this discussion is patients with chronic
pain and the harm untreated pain can also do.
The very few appointments I’ve had with Pain Consultants in the last few years have also had a tone change. It’s gone from a dismissive ‘there’s nothing we can do for you so you need to live with it and manage the pain as best you can with the medications you are on’, to a very similar one that includes a long lecture about the need to reduce the medications I’m on. Ah, because of the side effects? No, that’s not the reason. Because I’m abusing them? Not at all – I’ve taken the same medication at the same dose as prescribed for many years.
No
alternative is offered. I’m not told about any of the latest research or
studies on pain reduction. I’m simply
told it would be best if I reduced my pain relief. I then counter with a
question about quality of life – how am I meant to function with an incredibly
painful condition with no pain relief? It’s a question that never gets
answered.
I have been
under the same Pain Clinic since I developed chronic pain at age 15 and I’m now
in my 30s. So I have now been in
constant, crippling pain for over half my life – and in that time nothing has
changed. There have been no new treatments offered after exhausting the very
little allowed Physiotherapy and Hydrotherapy on offer. I personally spent many years and a lot of
money trying every therapy I could find – from exercise-based to stretching,
sticking needles in me, to weird off-beat ones, ones that target the mind and
many in-between. The NHS, however, has
offered the same few inadequate options.
While I’m
sure research and studies go on in the field of pain – I don’t keep up with
them at all. This may seem strange to
those without pain – but it would simply be a heartbreaking way to spend my
time. Even if there is a miraculous breakthrough, having that get through all
the trials, work for all patients with pain, be funded and offered by somewhere
I can access are all huge steps to climb.
The
judgement always feels like it’s on the patients to be doing something
differently. Self-management. How I’ve come to loathe that term. If cards were dealt to chronic pain patients
– self-management should just be one in their hand, along with Specialist
Consultant, Psychological Support, Care Needs, Equipment, Treatment Options,
Medication and I’m sure you can think of many others. What it feels like
instead is the NHS has either run out of cards to give or have taken the rest
away, so the patient gets left with one single option of self-management and
are told to like it, or lump it.
I’ve had
many of those other cards ripped away from me, but I’m still clinging on to my
medication card. I feel judged for doing so and more importantly, I feel
scared. Every time a new report comes out about opioid medication and addiction,
I wonder what the impact will be on chronic pain sufferers. Of course addiction
happens, and I’m not suggesting it’s an issue that should be ignored – but
instead it’s those of us with incurable painful conditions simply being left
out of the equation instead.
There are
such amazing advances taking place in medicine, but the knowledge we have of
both pain and pain relief still feel so basic.
How much money and research actually takes place in creating non-harmful
painkillers?
The UK
should not follow the same approach as the US that has villainised chronic pain
patients. It seems many Pain Clinics in the US now have a blanket ban on
prescribing pain relief, and will not take patients that have existing
prescriptions. For the very few that do allow medications, they will often make
patients sign a contract with them that has numerous restrictions such as
spot-check urine tests and the fact the patient is simply not allowed to take
anything other than their prescription. While it may seem reasonable on the
surface – this can include patients having to refuse pain relief after
accidents, operations or similar. People
with complex conditions can metabolise medications differently, and I’ve seen
cases where people who took what was prescribed having their prescription
revoked because their urine test either showed not enough or too much in their
system even though they were taking what they were supposed to. Other patients have had to stop taking
cannabis or CBD oils used legally that they found helpful because their contract
had a blanket ban on them.
Not only do
patients find the contracts stressful and coercive (i.e. they have to sign them
to receive any pain relief) a 2010 review also found that evidence was weak
that these contracts actually reduced misuse of medications.
I
personally believe it should be basic care to receive adequate pain relief, and when it’s treated this way the
relationship between patient and doctor simply becomes both negative and
fearful. An article in the British Medical Journal states, “One systematic
review suggested that addiction occurs in 8%–12% of individuals taking prescription
opioids, but most data in the review derive from the USA and we have no
definitive figures for European populations.” So not only are a lot of fears of
addiction coming from data in the US where the addiction rates are simply
higher, then even taking the figure from the US of 12% it still means a huge
majority are taking the medication correctly and as prescribed.
Generally
both chronic pain and Pain Clinics in the UK are an underfunded and
underresourced area. Just taking my local hospital alone five years ago the
clinic had eight full-time consultants, two pain nurses, a pain psychologist
and numerous support groups and pain management groups that were run
weekly. From that list, all that remains
is one part-time consultant. The rest have
simply vanished. Yet rates of chronic
pain patients and their needs have not gone away.
If the NHS wish
to reduce the use of painkillers they need to offer well-funded Pain Clinics
that can offer an array of services and alternatives in return. They can’t
remove both the clinics and pain relief and expect patients to just ‘get on
with it’. The result will simply cause
far more of a burden on other medical and care services as patients deteriorate,
and there will almost definitely be a massive increase in chronic pain related
suicides.
I don’t mean a headache, or even a broken leg. I mean long-term, unrelenting chronic pain. ‘Chronic’ typically means pain that lasts more than six months, and is generally past the point you’d have expected to heal. It doesn’t mean it’s psychosomatic. It could be an injury that keeps recurring, something that has healed incorrectly, or you have a condition that causes constant pain. Acute pain doesn’t mean the pain is worse, it simply means that the pain has lasted a short period of time. You can have pain at different levels of intensity – whether chronic or acute.
Before I had chronic pain myself, and for a long time after, I believed there were painkillers that could stop it. However, for the vast majority of people this isn’t the case. I won’t say there isn’t anyone who has found a painkiller that takes all their pain away, but for most people the best they can hope for is a reduction in pain levels. Something that turns down the dial, as it were.
Pain medication is a complicated area with no one-size-fits-all approach. There are lots of different types of painkillers, such as those that reduce inflammation, medications that work on nerves, antidepressants that also help with pain, and opioids which bind to specific receptors in the body . Further within the types of medications are even more options. It can have an immediate or slow release effect. You can take it by pills, patches, topical application, liquid, under your tongue, injection, and so on.
Once someone has exhausted the over-the-counter options, it can be a difficult decision to go to the doctor to ask for something different. It shouldn’t be. Pain deserves to be managed as well as any other symptom of a condition, but there seems to be far more judgement intrinsically linked. Perhaps it’s due to the fact pain is invisible, or maybe because it’s hard to comprehend the impact of when pain becomes chronic. Those feelings of judgement can also be internalised – that you’re not the type of person to pop a pill. That other people manage without. That it’s not healthy.
I remember once having an assessment by a Physiotherapist. In my area, they have something called a Spinal Pathway, so anyone wanting to see a doctor to have treatment for back pain has to be assessed by a Physiotherapist first. My GP had referred me as she felt an appropriate course of action was to see a consultant to discuss having some joint injections into my spine. After talking to me for a couple of minutes, the physiotherapist declined my request. I asked why, and he responded, “You don’t seem to be screaming out in pain for them.”
I could only sit there in disbelief. Pain is subjective, and very often when you have chronic pain, the amount of pain you’re in doesn’t show on the outside. If someone healthy woke up with the level of pain I live with on a daily basis, they’d be straight into Accident & Emergency begging for help. The fact that I’m not crying or screaming, and may even be upbeat and smiling is not because I’m brave, or special, or have amazing pain tolerance – it’s just that I’ve been in pain for 13 years straight this July. You have to learn to live with it to some degree, as there’s no other choice. A certain amount of pain becomes normal. That’s not to say I don’t have bad days, or that I don’t ever cry, or that the level of pain regularly jumps above the threshold I can cope with. It does, but I usually don’t go out on those days if I can help it.
Seeking help for pain relief with medical professionals always carries some risk, that somehow you may receive the dreaded drug seeker label. It happens all the time, to completely innocent people who are just trying their best to manage their pain, and have no interest in abusing the medication. The problem is your GP sees you for around ten minutes at a time, and for me I often have telephone appointments as I don’t have the energy to get to the surgery – so she can’t even see me. My GP is very nice, but she’s perfunctory and to the point. We look at medications and their dosages and side effects. She’s never asked me, How does your pain impact you? What help do you need? What does a normal day feel like for you? It’s likely because those ten minutes are ticking past, she’s already an hour late and has a room full of patients waiting. I understand the reasons why, but it’s hard for her to then build a true picture of my life. It would be very easy for her to see me sitting next to her, dressed and holding it together and wonder if it’s as bad as I say without that vital background of how long it took to dress, what help I needed and how long I will need to sleep when I’ve got home from the appointment to recover.
If someone has asthma, diabetes or a high blood pressure – there are tests to back-up what they’re saying. An asthmatic can blow into a Peak Flow Metre to show their inhalers aren’t strong enough, but chronic pain patients only have their words, their actions and the hope that the doctor will understand. It’s so easy to say the wrong thing that stops the doctor from understanding, and make them doubt you. But would a doctor judge an asthmatic who needs a stronger inhaler? Would their character or appearance even come into it?
My pain has been pretty uncontrollable lately. In some ways I’ve wiped out months of my life by changing to the wrong medication. So many plans went out the window at a moment’s notice. Frustratingly, I was undoing months of progress of physiotherapy.
Pain relief can be one step forward, and a marathon back.
Then I got myself into quite the quandary. I found a medication that worked really, really well. But only for a little while, and then the bad days were horrendous. My doctor was happy to keep increasing to keep those good days, but I always knew the bad days were coming. And they were so far above my normal threshold of pain, I couldn’t even begin to explain. But it was so hard to give those good days up – the days where I could function for longer than normal and even be productive.
I then had to make the decision to leave those days behind. I had to. I could have kept increasing the strength, but when would it end? I’m in my 20s – I have years and years of pain relief ahead of me. If I max it out now, where the hell would I be in my 30s, 40s, 50s and beyond?
With every medication you take, you have to weigh up more than whether it helps, but also look at:
Are the side effects bearable? Are you taking six different medications just to counteract the side-effects?
Your tolerance levels. Are you constantly having to increase the dose because your body gets used to it?
Your levels of functioning. Some of the best forms of pain relief make you incredibly drowsy, or make you feel ‘out of it’. That might be fine to have a little break, but if you want to leave the house, you need to find somewhere in-between.
Can you access it? Not every medication is available in every country, some are through consultants or specialists only.
The relief you get. Taking all the above into account, is it worth it?
Living with chronic pain can feel like you have multiple spinning plates that you have to keep in the air. One falls, and the medication isn’t any good. Then, when you finally get a level of pain relief you can live with, someone throws a spanner in the works, such as this morning when my GP phoned me to say the new pain medication I have been put on has just been ‘red-listed’ meaning only secondary-care (consultants) can now prescribe it.
It’s frustrating and exhausting trying to keep all those plates up. It’s important to remember however, that this is not a sprint or a marathon, it’s a long-term balancing act.
It’s sad when you get excited about a new pill holder, but there you are! I really like the colours, and the amount of boxes there are to split things up. Sometimes I find I don’t take things as often as I could, which then increases pain levels. So having it set out like this will show me if I still have more to take in a day. At the moment I’ve just got paracetamol in there, but got plenty to add. You can take each day out, so you only need to carry one section around with you at a time.
Next are two items to help my neck. The base of my neck burns hot pretty much all the time, probably from inflammation. I picked up this cool pillow pad at a mobility shop, as sometimes it’s so hot I struggle to sleep. I thought this might help, particularly in summer.
Similarly this is designed for the head, but is the right width to wrap around my neck when it’s burning to try and soothe it.
I’ve had a bit of a saga to try and get some orthotics sorted. My first referral was rejected by my GP, with a note it had to come from a consultant. It took me five months to see one, then another three months to get an appointment. So, nine months in total and I’m sitting in the orthotics office, only to say I should have been sent to the hand clinic to see a specialist! Argh! Lucky it didn’t take as long this time, just two months, and I saw them last week. Luckily they had much better ideas than the huge white plastic splint the orthotics departments had suggested – which immobilised my thumb completely.
What I needed was something that allowed my thumb to bend forward, but not backwards so I could still make jewellery. And I also needed something to provide gentle support when it was painful and inflamed. The Occupational Therapist gave me two things – a thumb splint, and some Cobon tape.
The splints are pretty subtle when they’re on, and don’t look so awful as some of them. They allow the forward movement I need, but stops the joint from hyper-extending backwards. When using my jewellery pliers it will still allow me to put the pressure on the wire I need.
So they’re my new gadgets! What do you think? Anything you think I need to buy?
