Tag Archives: pain

So MS Isn’t Painful?

MS painThere’s a misconception that MS is somehow pain-free and more of an irritant than anything else.

You know, the stumbling, the dodgy memory, the heat intolerance, the fatigue. In the grand scheme of things, not a bad little illness to have, right?


Sure, we can ‘laugh’ at the stumbling walk, until we trip down the stairs or fall over the in the shower, still clutching our Herbal Essence. We can put up with the joshing about our forgetfulness and fondness for post-it notes. As for the fatigue, well that’s just downright cushy of course. But pain?

Well, over the last month or so I’ve been in a lot of pain. First up was the heat intolerance. People will tell you it’s perfectly simple – just stay out of the sun, pop a hat on and drink lots of water. Why didn’t I think of that? If it were that easy, I would stay in a shady corner until the Christmas goods start appearing in the supermarkets.

So, the heat made me wilt. It pulled the plug on my energy, which was bad enough, but it then began to bring up intense itching, which to my horror, turned into a grotesque rash of blisters. To cut a long story short, after steroids and jumbo-sized bottles of grotty cream, it’s under control but I’m now left with ugly scarring all over my arms. And they still itch at the merest hint of sun, even through clothing. The boss has moved on from nicknaming me Half Shift to Apocalypse Zombie.

So far so bad but worse was to come. I’ve always had neuropathic pain in my legs, feet and arms and my dose of Pregabilin has been steadily increased to cope with it but over the last two weeks it morphed into something truly evil.

Take yesterday. I had a good day at work, got home, sorted The Teenager out (he’s on exam study leave, aka, doss around in bed all day eating toast), and put out the rubbish. Then blam, a whoosh of extreme nerve pain. I lay on the sofa whimpering and it rendered me useless. I tried to lie still, but the pain kept coming in hideous waves, along with intermittent violent twitching in my legs.

Sleep seemed the only answer so I set my alarm and tried to doze off. Only to be awoken by The Teenager crashing downstairs looking for the vacuum cleaner (he’s quite unfamiliar with it). Of course, after being holed up in his room all day, he wants to clean it at 8pm. He bashed every skirting board with the vacuum, sang (badly) at the top of his voice and chatted shouted to his friends on the X-Box before rushing back downstairs to make some toast.

So the next person who tells me I’ve got off lightly with MS, please excuse me while I trip you up and poke you with a cattle prod.

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Why Is MS So Difficult To Describe?

MS CartoonAs if going through the MS diagnostic process isn’t difficult enough, trying to describe MS symptoms to the uninitiated is even harder.

Take the MS hug. Cute name, excruciatingly painful. The first time this happened to me, I was in the office.

The pain came out of the blue, and as I held my ribs in breathless agony, my colleague politely asked why I was rocking in my chair, making funny gasping noises. After I’d told her it felt like a boa constrictor had wrapped itself round my body, she gave me a curious look and continued typing.

Or the exotically named L’hermitte’s sign. Electric shocks in the neck? Maybe it’s all in my head. Uhthoff’s Phenomenon? Try explaining the torture of frying from the inside out, the complete inability to do anything in the heat. The sadness as you watch the world go by from your window, life happening elsewhere, make-up sliding slowly southwards. Or the tragic look I got from my son the other day when he came home from school to find me with a bag of frozen peas balanced on my head.

Tell anyone else you’re heat intolerant (and it’s even got a fancy name) and you’ll get a barrage of ‘Oooooh, me too! Can’t stand the heat!’ I bore myself silly trying to make them understand it’s not just a case of sitting in the shade with a sunhat on, sipping an icy-cold Pimm’s. It keeps you locked in the house, limbs trembling, industrial-sized fan on full blast. With our current heatwave, even my head is trembling so much I look like a nodding dog. Or a weeble-wobble.

What about neuropathic pain? The constant buzzing, tingling, throbbing, burning in my feet and legs. It’s like having mobile phones strapped to my feet, set to vibrate, with a bit of pincushion-y pain mixed in. Or there’s other days when I can’t feel my feet at all.

But the biggie, as we all know, is the teeth-gnashing frustration of describing MS fatigue. No matter how you explain it to other people, there will always, always be someone who says, ‘Oh, I get tired too. I know exactly what you mean.’ Um, no, you don’t. Now, please run into my fist. I’m too tired to punch you.

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Well Hello, Fani!

Honeysuckle writes today’s incredibly funny/poignant Guest Blog post, – I think a lot of us will be very, very familiar with the following:

OK, what’s living with MS like?

It took a while before MS was diagnosed.

While the experts pondered, I named what I experienced FANI: Annoying Neurological Impairment. The ‘F’ is an interchangeable adjective, depending on how things are going: usually the first ‘F’ that comes to mind, but not always.

What with the life threatening, terrifying array of intractable symptoms and myriad of drugs on offer, the diagnosis of MS was a relief. Yes really. So the grief bit (you know, disbelief, anger, acceptance…) was largely skipped. It would be a massive overstatement, ok Big Fat Lie, to say that I welcomed MS. But in comparison, it’s not as scary. Not quite. Not yet.

FANI is challenging and underhand, irresponsible and unpredictable but always interesting. FANI has changed my life, on the whole for the better. No I’m not deluded or drugged, I do think this. Why? Because symptoms didn’t start until middle age and I’m still largely independent. That’s made a tremendous difference to my outlook.

That said, FANI’s not exactly a walk in the park. Initially, the early hours’ recurring loop of: You Cannot Be Serious. How Could This Happen? Tears and fears. Juddering snotty sobs. Eventually (I’m talking weeks here) followed by reflection. Fairness isn’t a concept I’ve ever believed in, fortunately. Prayer is a bit late now. Someone said, “Life is randomly cruel and kind”. This, I can live with.

Those indescribable sensations …why is an ice-cold cobbler’s lathe in my leg? Where did that shower of vibrating spikes come from?

That unrecognisable, hesitant, garbled speech. Who is that? Thanks, people for finishing my sentences with the (wrong) word that …just …… won’t… come.

Cramps…especially in my left buttock. Who gets buttock cramps? Could be funny, but it just hurts. There are few ways I’ve found to stretch and bend a buttock. All suggestions gratefully received.

Other stuff like jerky legs, limpy legs, migrating numbness and gnawing pain, frequent falls, pins and needles from face to feet, running (I wish) to the loo, utter exhaustion, daily injections now all part of the routine.

FANI you remain, grudgingly tolerated but less frightening now that I’ve learned to work around you. Not everything, but I’m getting cannier!

Life is good, although things have gradually deteriorated with each relapse. Orange, my future’s a mood-dependent turquoise or crimson, but you’re right, it’s bright. Because…? Well, shit happens and in the grand scheme, things could be much worse and there are many positives that I’ve come to appreciate. Happy to elucidate if invited back!

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