Chronic Pain – What does it actually feel like?

This is something I’ve been meaning to write about for a long time. While doing my dissertation before christmas I repeatedly read that most newly qualified healthcare professionals do not have a modern understanding of pain. I reviewed 9 articles for my dissertation, one common theme was the negative patient experience. Patients not feeling validated, not feeling like their doctors understood or being passed from pillar to post with no answers and very little understanding. If you’re a pain patient you’re probably nodding your head right now. If you’re a healthcare provider you might be reading this and thinking things have changed. You’re wrong.

Until I was 19 I honestly though that it was normal to be in pain every second of every day. Pain was the only state I’d ever known so that was my normal. It wasn’t until I was diagnosed with Ehlers Danlos at 19 that I realised how wrong my perception of ‘normal’ was.

Pain, for me, usually falls into a few different categories. I have a constant kind of low-level ache throughout most of my joints and muscles. I have intermittent sharp stabby pains… it’s almost a kind of twang like a tuning fork being tested on my nerves. Sharp and intense with aftershocks that tail off over a few minutes. When I stand upright for more than about two minutes I develop burning pain in my feet. It’s like standing on a super heated pavement but the burn goes straight to my bones. Along side that I have acute pain associated with the sprains, strains, subluxations and dislocations I get on a regular basis. These are usually sharp intense pains that tail off gradually over days or weeks. The sharp element takes my breath away even through it only lasts a few seconds, I can’t breathe, speak, move or even think until it eases off. The same is true for my ice pick headaches, they are called ‘ice picks’ for good reason. The headaches feel like someone has driven a spike through my face, usually only through a small isolated area but the pain is breathtaking for the 30 seconds it lasts for. Alongside these I also have proper migraines.. mine is a random mix of migraine symptoms, never the same twice. Numbness, paralysis, pins and needles, dizziness, all kinds of pain, nausea, muscle spasms, visual disturbances, sensitivity to light or sound.

I am in pain every second of every day, not just my waking hours either. Years ago I remember dreaming about being in a plane crash, in my dream I hurt my hip.. when I woke up the reason for that dream became painfully obvious. I’d dislocated my hip in my sleep, the dream was my subconscious processing the pain.

I’ve spoken to a number of people, like me, who have variable mobility or pain levels and we often have strange ‘pain dreams’. Some of dream in wheelchairs only to wake up in a pain flare.

As healthcare professionals we (and I use we since I’ll be an OT in a few months) can very easily become desensitized to our patients’ experiences. To some extent I think we have to, if a Doctor became emotionally invested in every single one of their patients they’d be an emotional wreck within a month.

As a Doctor, you might frequently hear patients describe their pain as burning or stabbing. You hear this so often that those descriptions just become words. As a patient when I describe something as a stabbing pain what I actually mean is it feels like someone is stabbing me. Just think for a second what that actually means. Analyse all the words. Imagine just how horrible that feels.

When providing healthcare it’s also important to remember that a patients’ pain doesn’t end after discharge, they have to learn to live with the pain, potentially forever. Patients with chronic pain don’t always get used to it, we just learn various pain management strategies. We cope.

As patients the experience is very different, we are emotionally invested in our case, in our appointment the only thing that should matter is us. Being a patient is often a selfish experience, it has to be. If you want to get treatment you have to advocate for yourself, healthcare professionals can’t tell you’re in pain, you have to tell them.

Being both a patient and a professional has taught me a lot, I can understand both sides of the story. Hopefully this has helped a few other people to understand too.

As always questions and comments are always welcome.


12 thoughts on “Chronic Pain – What does it actually feel like?

  1. You may have written this in 2016 but it still rings true today. Chronic pain is also very exhausting. I am coping but since joint hypermobility is still not really known about in my neck of the woods, I tend to just push until my body literally cannot get out of bed without a solid day of rest. Hopefully soon this changes for me and I will be able to not push as hard.

    1. That’s definitely relatable! I learnt the hard way that if you push too hard your body crashes badly. There’s lots of advice on my website about managing hypermobility symptoms and I do offer masterclasses in things like Pacing too. (Worldwide excluding USA & Canada).

  2. Great post Jo. My pain has significantly improved due to diet change but I still have to be very careful I’m not sharing what the change is as I know we are all so different but it’s not a totally ‘clean’ diet

    Anything which causes cortisol or adrenaline release is likely to leave in pain and fatigue if not today then tomorrow. This is mainly anger and stress but can also be triggered by anxiety too

    1. I’ve found a lot of relief from dietary changes too. Low FODMAP (In particular the gluten-free bits) have settled my stomach loads and my fatigue is a lot better as a result 🙂

  3. I love that you’re a doctor living with chronic pain. I had chronic headaches, neck and ear pain as a teenager. I would get acute spikes in pain where it felt like someone threading hanger wire through my ear, so I didn’t want to move my head. My pain resolved when I started taking care of my body and got out of my toxic family environment. The first thing that helped was massage therapy. It was so effective at flipping my pain “off” switch that years later I chose it as my profession. Now I’m in my 12th year of practice and specialize in helping people with complicated pain and mobility issues. A lot of my frustration is with insurance companies pushing to end treatment or not authorizing visits, because to them pain should resolve after a while. And if a person is permanently stuck at a certain point or have an underlying illness driving their pain, they don’t want to pay for massage therapy. They always want to see “functional improvements. And yet for many of my clients, massage is one of the few (if not only) interventions that brings them significant relief, helping them cope with the pain. It’s not just while they’re receiving the hands-on therapy, but with regular treatment their set pain level goes down. I hope as a physician that you assess and refer your patients to medical massage therapists for drug free pain management. Thanks for this article!

  4. Have you read the book “The Story of Pain”? It’s a great book that covers the history of pain, and so much on how misunderstood it is, the words we’ve used over time, and how doctors don’t get it. It’s a long book but well worth the read.

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