Blitzkrieg

One of the things my brand new neurologist did for me when I met him earlier this year is confirm my diagnosis of restless legs syndrome (RLS). It’s something that I’ve been wondering about, on and off, pretty much since diagnosis, so it’s ‘nice’ to have it confirmed.

It’s not a symptom of MS, but there’s a higher incidence among MS patients than the general population.

In fact, what I assumed was leg cramps associated with the MS is actually RLS.

Where it has been an inconvenience before, it has suddenly decided to ramp things up a notch or two. Instead of an uncomfortable build-up of tension in a calf muscle followed by my leg clenching (bad enough), the build-up is leading to a muscle explosion. Don’t forget that, along with most others with the condition, this happens in the early hours of the morning.

It really impacts on my quality of life, and on Mrs Dave’s too when I wake her up with it.

Over the years, I’ve tried different meds (Gabapentin, Amitriptyline, Baclofen) to smooth it out but been flattened by the side effects instead. I ended up ditching Baclofen last year after increasing the dosage to a level that I really wasn’t comfortable with before the initially calmed legs started playing up again.

The last ditch attempt to do something about it came in the last week or so when I tried rotigotine patches that the neuro had suggested. At a higher dose they’re normally prescribed for Parkinsons patients, so they’re a pretty serious drug.

My word they worked!…

…they worked for three whole days. For three days I was restless leg free.

Bliss!

I mean, I woke up in the morning feeling nauseous and headachey as side-effects of the rotigotine, but that’s still heavenly compared to the daily blitzkrieg of RLS.

I could still feel that something wasn’t quite right; there was still a little bit of tension build-up, but not enough to cause distress or explode in a massive leg spasm, more like a stiff leg. But then, after sitting down yesterday evening to watch TV, it returned – bang! – out of the blue.

I wondered if it was a one-off and made sure to do some stretches before bed, but it came back with a vengeance at 2am.

It feels a little bit like I’ve kidnapped my neighbour’s barking dog and dumped it on the far side of town – just far enough to hear it at night in the distance – and now it’s found its way back home.

So I’m feeling quite glum.

My glumness has been compounded by restless leg message boards which state that it’s a common occurrence with this disease. It gets blasted with medication and then decides to go “f**k you! – I’ll show you what happens when you try to fight me” and then untangles its way out of the medicinal straightjacket you tried to put it in.

Restless legs can be so distracting that I’ve even had fantasies of blowing my head off with a shotgun when it flares up at the end of the day when I feel fatigued. Thank crikey for British gun laws as these aren’t light-hearted fantasies in any shape or form at all. The rotigotine prescription is pretty much the final straw medicine-wise, as far as I can see.

So what can I do?

Before the patches, I’d called in on Holland & Barrett, after a discussion with the MS nurse, to see if CBD oil supplements and magnesium tablets might help (as suggested by some on MS message boards). They didn’t, but the CBD oil has helped a lot with balance and leg strength, to the extent that I really notice if I forget to take it.

So I’ve been down to Holland & Barrett again and I’ve stocked up on Vitamin D, because it’s MS innit? And we all know of the potential link between MS and vitamin D, don’t we? I’ve also bought some B12 tablets, primarily because I haven’t eaten red meat for 30 years and I think I probably need to supplement my diet with this, anyway.

I’m not giving up on the rotigotine yet. I’m going to see out the course of this set of patches before making my mind up, but as I’ve been typing this my right calf muscle hasbeen jumping.

Baclofen fun

Well it’s the new year (happy new year!) and after over-indulging over the festive period, my thoughts have naturally turned to new year’s resolutions. Normally it’s something to do with losing a bit of weight and becoming fitter, even if it’s just a little bit fitter and being able to take my belt in a notch, or maybe even two notches if I’m lucky.

I’m not talking about joining a gym or going on a crash diet, because that’s just not me. It’s not something I can sustain or commit to. I know I can shed the pounds I need with a few sensible lifestyle changes. I’ve done it before, and that’s what I intend to do.

Also, the trouble is, I’ve come to the realisation that if I need to get fitter I need to build up some strength in my wobbly legs first.

There’s a brand new branch of the co-op just over half a mile from where I live. This has provided a good excuse to nip out for any supplies we might need. The co-op is about as far away as other local shops, but the walk involves a traverse of a local park so it’s much more pleasant and enticing than nipping to the local Spar or the Morrisons supermarket. If we run out of milk, or if I need some green pesto (co-op do a very good pesto), I treat it as an excuse to get some fresh air and a change of scene.

By the time I get home, though, I find it becomes a real effort to coordinate putting one foot in front of the other, my legs will be in the process of turning to jelly and I’ll clumsily fumble with my shoelaces like a crap Houdini once I’m through the door.

The truth is that I can barely walk a mile these days without the need of a ‘good sit down’ straight afterwards. This is a far cry from the five miles I used to run around the neighborhood until relatively recently, or the eight miles I used to walk every day while working in the east end of London some 15 years ago. When that mile is up, I’m already off balance; I feel like I’m leaning forward, waiting to collapse into the friendly welcoming arms of my sofa.

And it’s not just walking: I went to see one of my favourite bands – Mudhoney – in Leeds towards the end of last year and spent most of the gig worrying about my ability to stand up for long periods, only for someone else’s legs to give out in front of me.

So what’s the big difference between then and now?

Like any human being looking to lay the blame fairly and squarely at someone else’s doorstep, I’ve laid the blame at the doorstep of Baclofen.

Baclofen is a muscle relaxant that I take a couple of hours before bedtime to alleviate nighttime leg spasms. These spasms can literally kick me awake in the middle of the night and then repeat on a cycle every 20 to 30 seconds over a period of an hour or two. On the rare occasion they don’t kick me awake straight away, they’ll kick my wife awake who then obliges by throttling me into the world of consciousness.

Initially my dosage was a single 10mg tablet, but this stopped working as well as it had in the past and I upped the dose to 20mg towards the end of last summer. Over the last month or so I’ve noticed that the 20mg dose had stopped working as effectively, and now, when I wake up in the middle of the night for whatever reason (and I wake up every night), I know I’ll get a spasm by the time I count to 20.

I rang the MS nurses for advice. Should I seek an alternative drug? One that will not only prevent the spasms but also not cause the muscle weakness during the day?

Well, the short answer to that question is ‘no’. I seem to be prone to side effects, and they all have their side effects.

Twenty milligrams is also still quite a low dose and I can apparently increase this to 80mg if I need to. The leg spasms could also be kicked off by factors other than the medication losing its efficacy, or disease progression (my other worry).

Questions that the MS nurse batted my way included whether I’d had any infections… None that I knew of, although, being a catheter user, I could have had a mild infection without being aware of it. Also, I’d come down with a heavy cold in the previous 48 hours.

Also, have I had any major stresses? As I can confirm from my relapse history, stress can apparently influence MS as strongly as any infection.

Apart from my dad dying a month ago, his funeral occuring a couple of days previously and Christmas in the intervening period, I had no stresses that I could recall at all. Maybe the normal day to day stresses of being a parent to one teenager and one nearly-teenager, and being married to someone who takes a not unreasonable dislike to being kicked awake at 2am, but hey!… apart from all that, life is generally sweet.

The upshot is, I’m increasing my dose to 25mg until life gets a bit more tranquil. I’m starting to introduce more gentle exercise in my daily routine and I’m keeping a close eye on any changes for better or worse. Hopefully, when things are a little more settled, I can reduce the dose down again.

Let’s get physio.

Here’s a video showing a typical minute in the life of my calf muscles.

Yesterday I added to my Panini sticker book of health professionals by seeing a neurophysiotherapist for the first time. It was mainly about leg pain and my twitchy calves, but also about my general clumsiness, fatigue and my general state of affairs.

My fasciculating legs are a remnant, along with my doublevision, of my last BIG relapse in 2008. While other symptoms have fallen by the wayside or make occasional quick unannounced visits like an unwelcome relative (I’m talking about you, vertigo), my painful legs have been a problem for the last decade. I’m not saying the twitches are painful in themselves, but there’s a correlation: the more painful my legs are, the twitchier they’ll be.

I reckon seeing a physio is one of the best healthcare experiences you can have, as it’s pretty hands-on. It’s just nice to hold someone’s hand, even if they are jerking your arm around. I had my balance, my range of movement, my reflexes, and what sensations I was (or wasn’t) feeling assessed. Most importantly, I got to talk everything out, relaying everything I’ve been through from day one, to someone who genuinely listened.

It also helped me get my head round things. I’ve been using the word ‘pain’ as a box ticking exercise; it’s a convenient way to describe an unpleasant sensation, but it’s not pain in a conventional sense. If it was the pain of a headache, burn, tooth or even a bad back, I could rationalise it, no matter how intolerable – my pain threshold is pretty high (ask my dentist).

This is the pain of extreme discomfort; the pain of an itch you can’t scratch or the ache of an amputee’s phantom limb. At its worst, it’s torture.

I was asked to describe the way my legs feel, and after thinking for a while, I said they feel charged; they have an electricity about them. I’m pretty sure if I listened carefully enough I’d hear the crackle of static or the hum of an overhead power-line. If they wake me up in the night, the charge builds up over a period of about 20 or 30 seconds before discharging in a spasm. Only one leg at a time will be a problem. If I gently touch the sole of my foot or my calf muscle when they’re at their most sensitive, they’ll recoil in a hyper-reflexive instant.

Again, I thank my lucky stars for MS nurses because it’s only this year when I mentioned my legs in one of my nurse appointments that anyone has taken them seriously. Even my neurologist has dismissed them in the past as a twitch that everyone gets (really?) just like a twitching eyelid.

At least now I can take baclofen a couple of hours before I go to sleep and combine these with stretches and exercises to ease my way into the land of nod. I also have a series of follow up appointments with the physio to look forward to.

Post script:

After writing the above, a mildly arthritic big toe joint has decided to flare up. This is causing me no end of agony from the attached leg alone. When I saw the physio, it was after a fairly comfortable morning of working from home, so typically, I couldn’t demonstrate the worst case scenario. Today’s a different matter, it’s like my whole leg from the knee down is on fire. My reflexes are kicking in every time my foot touches something, making it pretty hard to walk. I’ve taken my baclofen early, and I’m taking ordinary painkillers for the toe, so fingers crossed I’ll get some sleep, but I’m not holding out too much hope.