Chronic pain

It’s been a while folks… but I’m back! I thought you might be missing me moaning about my heart and then my related sarcoidosis diagnosis, so in order not to disappoint I thought I’d go and get another complication to bore you with!

In all seriousness though, chronic pain man…what the actual f is that about?! Mine is my sarcoidosis at play once again, which is, as we previously discovered, why I had a heart attack, which we are now calling a cardiac event, which I’m chuffed about as it might lower my life insurance! Anyway, I digress…back to pain. They say it’s in the mind…arguably not when it’s waking you up in the middle of the bloody night and it feels like someone’s holding a lit match to your thighs, every single nerve in your limbs feels like it’s being crunched, while at the same time a rod is being shoved up your backside or a needle jabbed into the soles of your feet, and all the joints in your fingers are being tugged at. To be fair pain is definitely far worse when we are not distracted, as I’ve discovered, so I’m now making it my life’s work to distract every little bugger of pain in my body by running and dancing the hell out of this life!

My pain initially started a few years back with rectal discomfort that was so severe it made me pass out in the bathroom and I had to be blue lighted to hospital because the medics thought it might be a twisted bowel. Such a drama queen! That pain has come and gone ever since – with no real pre-warning of when it’s going to rock up, and usually sees me running for the loo, armed with paracetamol and ibruprofen, and my IBS meds. No-one talks about toilet-based issues much because it’s, God forbid, not very glamorous but I’m honestly past caring. We need to be honest and keep sharing.

Last December, the three middle toes on my right foot suddenly went numb and since then I’ve had constant nerve pain in my limbs. Some days it’s worse than others. Some days it’s quite unbearable – I don’t know what to do with myself and I get incredibly agitated and feel like I can’t cope with it anymore… but pounding those pavements has been my salvation. Running is my greatest drug of choice, supplemented with specialist pain medication of course. I will do anything to stave off steroids and immunosuppressants.

Yesterday was a bit of a milestone as I was finally seen and assessed by the neurologist in London who deals with sarcoidosis (the only one in the UK!!!). Not only did she believe my symptoms were real (I sometimes doubt myself after previous negative experiences with medical staff) but she’s ordered a whole host of tests. On the cards is another lumbar puncture to rule out MS and check the spinal fluid for other issues, tests of the main nerves and small nerve fibres, as well as a skin biopsy and a tilt test, where they literally try and make you faint. This is because I have been getting dizzy spells for several years when standing up, which weirdly could be connected?!

So now we wait. For the time being though I need to get back running after four weeks off, due to a knee injury (no Bath half marathon for me this Sunday), and clear a space somewhere for a dance floor! Who’s joining me?


One thought on “Chronic pain

  1. Leigh-Anne says:

    Aww Sue, you are super woman. My mum needs a hip replacement (NHS wait times mean she has been waiting for 3 years so far) the pain is now so bad she is eligible for a blue badge due to not being able to walk without an aid and uses a mobility scooter… they have said her pain is chronic pain and prescribed cocodomal 😭. She had a heart attack 22 years ago at 39. I hope your tests come back OK xxx


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