The Balancing Act of Living with Chronic Pain

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Have you ever had pain?

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.

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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.

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10 Comments

  1. Gosh, I agree. I’ve had a lot of mental illness over the past 15 or so years, when I moved to my current area I came straight from a long admission under section and so my new GP was very aware of me as a patient. My mental health is now pretty good, but EDS pain has developed over the past year. I’m fortunate in that my GP already knew me, very well, when I started talking to her about pain and that when I say something hurts, it HURTS. I’ve self-harmed very badly in the past and with EDS skin, my arms look like a Staffie’s chew toy – when people say to me just to grow a pair and suck it up, the pain can’t be that bad all of the time, I roll up my sleeves and tell them ”I did this to myself for s***s and giggles so yes I do actually know what ‘real pain’ is.” It’s sad that I have to provide visual ‘proof’ of pain tolerance to be taken seriously.

    I can’t take most anti-inflammatories as my stomach is a complete mess, and opiates really don’t have much of an effect on me – but even if they did, they’re contraindicated with my bipolar medication (which I’m really reluctant to change as I’ve finally found a combination that keeps my mood within normative levels). Amitriptyline is the most useful but it makes me really groggy. Diazepam can help, but I need an ENORMOUS dose even though it’s never used more than a couple of times a month tops. Sigh.

    And then when the pain’s less either I cannot stand up because of POTS, or my brain fog is so bad I cannot focus on ANYthing let alone hold a conversation. I was (technically still am) a Pharmacy student, had deferred once and suspended twice because of mental health, worked SO hard to be able to restart – and then my body broke.

    Reply
    • I’m so sorry you understand far too well, and it’s so difficult when you need to balance various conditions and what may be best for them like you do.

      I hope one day you get to follow your dreams and complete your pharmacy studies.

      Thanks very much for commenting!

      Reply
  2. What a well written article – describes what most of us are going through – it’s a real invisible illness. As I’ve got older I find pain control much harder and I find my GP has less time for me and they also mention the costs of drugs too!!

    Reply
    • That is exactly what I get from my GP and because I also have anxiety and depression I live in fear now of seeing my GP and have to work myself up to it.

      Reply
      • It just shouldn’t be that way. GPs should be OUR first-line support, not making us feeling even worse.

        Reply
    • Thanks very much for your comment!

      I’ve found that recently as well. I think the doctors taking on the budget has had a mind-shift for many GPs. It’s no longer what’s best for the patient, but what’s the cheapest. I do realise savings have to be made, but when it’s said to your face you can’t have it because of the cost, and there is no alternative – it makes you feel worthless.

      Reply
  3. I totally agree with everything you have said. I have had chronic pain for 35 years. EDS Type 3 exacerbated by the release of the hormone Relaxin when I was pregnant. I had a ruptured disc that was not diagnosed for 2 years because my hypermobility allowed me to bend over and put my hands flat on the floor. Orthopaedic surgeons dismissed it as a psychological reaction to my husband’s presumed death despite me having the accident 4 months before he disappeared. I finally got a diagnosis of benign joint hypermobility syndrome 14 years after the symptoms first appeared and was told everything “should tighten up once you are through menopause” Hah! No improvement but more and more joints subluxating. As a registered nurse I did a post graduate course, “A holistic aapproach to pain.” The first thing we were told was, “Pain is what the patient says it is” and “No-one can feel another’s pain.” Regrettably this mantra does not seem to have been imparted to the medical profession as a whole

    Reply
    • My response back to you seems to have vanished?

      You sound like you’ve been through a lot, I’m sorry. :/

      Doctors really need re-educating as so many seem to think all movement is good, and look for stiffness instead.

      It’s great some nurses are being taught differently.

      Reply
  4. I noticed on my GP,s screen that because I have been taking codeine 60mg for severe back pain over a long time but without my GP,s believing me or investigating … I had a red line at the top of my notes saying I was addicted to codeine and to be “watched”!! The fact that they later discovered after 2 years by which time I was in agony and couldn,t walk that I had spinal stenosis, 2 undiagnosed slipped discs and MS doesn,t mean that they have removed it from my notes!!!

    Reply
    • That’s awful – I’m so sorry. I would be mortified and furious. Have you thought about submitting a complaint?

      Reply

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