Tuesday 28 September 2021

Living with chronic pain - Pain Awareness Month

I've lived with being in pain for so long now that for me being in pain is normal and I've forgotten what it feels like to not be in pain. Pain as a symptom is a key component in all of my physical chronic illnesses. I experience many different types of pain including joint pain, neuropathic/nerve pain, muscle pain, headaches and migraines, bladder pain and gastrointestinal pain. Then there are different types of pain that I feel - a dull ache, spasms, cramps, tingling pins and needles, a sharp stabbing sensation, griping, throbbing, and crushing, head pain during a migraine to name a few. Sometimes my pain is just there in the background other times it can be an acute onset of pain for example due to a joint dislocating.

One of the big problems when it comes to pain is the with my neurological disorder, FND, as it is a result of the nervous system not working and a fault with the brain's messaging system in my brain the signals for pain remain switched on to the max even when there may not be a reason for me to be in such high levels of pain. I then experience a wide range of chronic and acute pain on a constant basis for all sorts of reasons as pain is one of the key symptoms that come with my different illnesses which doesn't help the the mixed up pain signals that comes with my FND. This means that I really have to be on-it with managing my pain utilising skills such as distraction, mindfulness, using my hot water bottle/heat pad, my acupuncture pen, TENS machine etc. I always try and use pain relief medication as my last option and then I will slowly step-up what I take, the only exception is in the case of severe acute pain where I need to take some sort of pain relief immediately.

Living with chronic pain can be hard especially on my bad days as I'm wanting to distract myself from the pain but I'm unable to do so. As well as that often when I've over done it or 'done a big thing' this will trigger my PEM/PENE* which will flare-up my pain along with my other symptoms.

Illustration of a woman inside a box with her arms and head sticking out the box. The box is labeled fragile. Text reads 'be gentle with me'.
Chronic pain can also be pretty unpredictable and I can never plan for when I'll be in pain beyond my baseline everyday level of pain. The question of how much pain I'll be in and for how long I'll be in pain is something I will never know. I take various different medications to help manage my pain. I prefer to use the term 'pain relief' as that is what medication does, it doesn't kill or eradicate my pain, only bringing me a level of relief so that I am to a certain degree able to function and get through the day and the pain despite being in pain. 

It's hard to try and comprehend to explain to others including medical professionals, even those in my pain management team what it is like to constantly be in pain. Constantly being in pain affects me a lot, not just the physicality of being in pain or waking up at 3am with a raging migraine or having my bladder spasming so bad that I'm double bent and curled up crying struggling to syringe up some pain relief and turn on my heat pad. It's the emotional impact of being constantly in pain that I feel wears me down the most because the pain is so relentless and you become 'sick and tired of being sick and tired'. Those are the difficult days when you know you're 28 and you wonder if this is it for the rest of you life. Other days I feel more hopeful and able to cope with my health problems and associated pain.

I've found my appointments with the hypermobility pain team helpful and what I've learnt in these sessions I can apply to my other illness a little and hopefully (or one day) I'll see a neurologist from the migraine clinic which I'm really will happen (my referral is somewhere in space due to the pandemic). In the past I was under a local pain management service but they were as helpful as a chocolate teapot! My other symptomatic pain from my other illness and co-morbidities are also slowly getting sorted.

I know the pain will always be there to some degree but it's learning to live with an manage it. I know I will have my difficult days when I feel like I can't cope. Planing, pacing, activity management and regular rests help me to keep on top of my symptoms including my pain but it's journey to learn how to live alongside chronic pain.

*PEM - Post Exertion Malaise // PENE - Post Exertion Neuro-immune Exhaustion