Cramp so bad I don't know what to do

Have nothing to add to the above Tina, but just wanted to wish you better! Horrible experience. I hope the neuro sorts you out.

Louise x

Hi Eiona i am 63 and allowed 2mg Diazepam lol…woo hoo. I take it at night when i wake up with spasms. My GP said to me its addictive, and i said at my age i dont care lol…as long as it helps ha ha, so me and you think alike lol. x

I hear you!

Completely with you about the “addiction” crap! Thank God I have a sensible GP - she’s told me in the past there’s NO EVIDENCE Diazepam would be particularly detrimental if I were on it for life - it’s not associated with any major health risks. So I don’t actually care. I find “addiction” a meaningless concept when you have a lifelong condition. You have to find a compromise that allows quality of life.

Most things prescribed for MS symptoms can’t just be stopped suddenly. I know Baclofen can’t, nor Gabapentin, Pregabalin, or anti-depressants.

If you can’t stop at will, or it’s dangerous to, isn’t that also addiction?

OK, I know we could get into a long philosophical debate about physical v. psychological dependence. But sometimes you have to do something - and sod the consequences. Nobody who’s taking anything because they have MS is abusing the stuff! They just want the best life possible.

Grrrr, makes me so mad!

Anyway, will update near the top somewhere about the rest - actually, there IS no update.

Tina

xx

OK - update following neuro appointment is we’re not going to do anything.

He had already made a note to recommend magnesium, but I’m doing it anyway.

We did discuss a couple of meds that can be taken along with Baclofen - one was tizanidine - I forget the other.

But he was concerned about drowsiness with the tizanidine - which I already have a problem with. The other one whose name I can’t remember can adversely affect liver function, so needs regular blood tests. As I don’t drive, that would be a total pain.

There was nothing he could recommend that I would take ONLY on an ad hoc basis for days like yesterday, and not have to take all the time. That’s a shame, because I don’t really want to take anything continually for symptoms that are only very occasionally that bad.

He also said that because of all the things I’m on already, every new one I add increases the risks of side-effects, because they combine to make the side-effects more likely.

So he did leave it entirely with me - I didn’t feel he was trying to discourage me - but he said it has to rest with the patient, and he didn’t just want me to walk out with prescriptions for everything, and then be sitting at home like a zombie, with quality of life having plummeted.

So as usual with all these things, it’s a compromise - and my decision. It looks like I’m going to have to suffer very occasional agonising pain, or be open to new meds that come with their own risks and problems. At the moment it looks like opting for the occasional agony. If it becomes more than occasional, I’ll obviously have to reconsider.

Oh, small aside - I worry about missing my appointment due to public transport issues! Poor neuro was late because his train was delayed! He’d phoned ahead to ask reception to apologise and offer me tea - bless!

Tina

xx

Sorry - it came out at the bottom! I was trying to reply to myself, at the top!

T.

x

Sorry you are having such a horrid time, Tina. Have you talked to your neurologist about Sativex?

Alison

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Hi Alison,

No, Sativex wasn’t mentioned. Didn’t even occur to me to ask, for some reason, and it certainly wasn’t on his list of suggestions.

I have asked my GP in the past, though, but she’d never heard of it, and had to look it up in the formulary, only to say: “Oh no, we don’t do that!” - so I assume that applies to the whole PCT, and isn’t just a policy decision of that particular surgery.

It’s rare the pain is as severe and unresponsive to treatment as yesterday. I do get some cramp, most days, which, as unwelcome as it is, I’ve learnt to accept. But it’s not usually as incapacitating as yesterday. He asked me if the whole leg had locked up, and I said yes!

If it had happened three months ago, and not - by coincidence - the day before my appointment, there’s a chance I might have forgotten to mention it, but with it so fresh in my mind, I could hardly fail to say anything.

We even discussed botox injections - which I thought was quite a drastic option for something that’s so occasional. Then again, it’s a very drastic pain when it does happen. But he went on to effectively rule it out, because he said it’s most effective if it’s a single muscle playing up. He didn’t think it was indicated for large collections of muscles, such as those of a whole leg!

To my great relief, physio was ruled out (my opinion of the physio is well known on these forums!), as he thought anyone who’d just walked 3.5 miles before there was any problem probably wouldn’t especially benefit from physio.

As expected, he was very focused that I’m out walking 3.5 miles at all, 4.5 years after diagnosis, rather than that I’m getting an agonising backlash hours later. I do try to feel suitably grateful, as he appears to think it’s not only good, but verging on remarkable that I’m able to do such a thing in the first place.

So it’s swings and roundabouts, I guess. Great that I’m still able to do something that, for most, is unthinkable this far in. Not so great that I’m paying such a painful price for it later, and this seems to be an increasing trend.

I suppose I’ll just have to keep an eye on it, and if it gets so predictable it’s stopping me doing the walks, or starts happening when I’ve not been testing the boundaries at all, I’ll have to revisit the treatment options.

Tina

xx

It is horrible when MS demands a bit of a change in the scope of the things we feel confident that we can do. I guess the best we can do is to go down fighting and with colours flying - but compromise a little when we absolutely have to. No shame in that.

A

x

I wonder why you took baclofen and diazepan before you set off.

Might taking those have relaxed some muscles that you don’t normally use with the result that after you had finished your walk these muscles cramped up.

Often if I’ve been swimming I will have cramps in my thighs at night. Absoloute agony - I struggle out of bed try to remain standing up holding on to the chest of drawers until the spasm eases.

I put it down to my using muscles which I don’t normally use when I go swimming and it’s these that cramp up.

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Well, the Baclofen’s simple - I’m on it permanently, so a dose would have been due whether I was about to go for a long walk or not.

For the rest, I’ve learnt by trial and error it usually (or used to) work out better to dose up with everything before I set off, as it reduces problems halfway round - like cramps, and aches and pains.

I’m not new to the walks, but admittedly a bit out of practice this year. I don’t have a history of problems after I get home - it’s a new thing, the past three or four times. The first once or twice, I even thought it was coincidence, as I very occasionally get these very severe cramps for no identifiable reason - just a change in the weather or something.

But now it’s happened three or four times in a row, with nothing so severe in between, there’s a definite pattern emerging - I’m sure it’s not just bad luck, and that the walks must be causing it.

Yet there’s no problem on the walks themselves. Yes, I’m tired - I expect it. A little bit worse for wear - I expect it. I have MS, the others don’t. But nothing truly incapacitating, or that any but the most astute observer would even notice. The friend who knows me well might ask: “Oh, are you beginning to struggle?” - perhaps by a change in my expression - but I’m certainly not collapsed in agony, or even lagging behind. It all happens after I’ve got home.

Tina