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Cramp so bad I don't know what to do

Although cramp is a very common problem with me, they are mostly not the really severe, agonising, incapacitating kind, but I’ve noticed the latter are on the increase, and am now sure they are linked to activity earlier in the day.

This morning I went out for a very long walk, with what I call - probably rather unfairly - The Golden Oldies - because most are at least 20 years older than me.

It was a mostly flat walk, on firm ground, so nothing particularly ambitious, apart from the length - 3.5 miles. But they’re old, so the pace is not demanding.

Dosed up well with medication - both painkillers and muscle relaxants (baclofen, diazepam) before the walk, as I have found from experience that if I’m expecting to put demands on myself, it’s more effective to treat problems before they arise, than wait to arrive home in distress, and then try to treat pain which, by that time, has got a grip, and is harder to shift.

So, suitably medicated, I completed the distance with ease - helped by the fact I met an old friend who hasn’t been for months -so we talked 19 to the dozen all the way, so I hardly noticed the route, or how far we’d gone.At the end, I even walked about an extra half mile to the chip shop, to treat myself to lunch, as I knew I’d get home very tired, and not want to be bothered with cooking a meal tonight.

That ends the good bit. After lunch, I went upstairs for a nap - normal, for me, but especially after a long walk.

I’d only been sleeping about an hour, before I was woken by the most horrendous, toe-to-groin cramp, that leaves me unable to walk. Cramps this bad are thankfully very rare, but have happened the last twice I went walking, too. I thought at first it could be coincidence, as there’s always been one in a blue moon anyway, but three walks, three cramps? None this severe on other occasions? It’s got to be cause and effect.

I’ve stupidly never learnt to keep a supply of medications upstairs, in case I can’t get downstairs, so I had to make it all the way downstairs with an agonised, totally useless leg, to get to the kitchen and the tablets. Took another Baclofen immediately, even though they normally wouldn’t be due for another couple of hours. Also took another (whole) diazepam, even though I’d already had one today. I have some discretion with these, as they’re: “Take one as needed.” I thought: “This is an emergency; it IS needed!”

Thought that should calm things down, and after waiting for things to ease, limped rather cautiously back up to bed.

Only in bed about another half hour - started typing this from bed, and blow me if it doesn’t start again, same leg, toe-to-groin, agony.

So yet again, I hobble downstairs - this time trying a different tactic - grit my teeth, weight bear, and do it faster - more pain, but less time to get downstairs.

This time I take the other Baclofen (still early), a quinine (hours early - usually a last thing at night drug), yet another half of diazepam, and two magnesium.

There is now nothing left in the house I can take without exceeding the prescription.

I’m back in bed, and it’s twinging AGAIN. Other leg is now joining in. Have tried slathering myself in magnesium oil, have popped the hot water on for a soak, and have just drunk a small tot of neat pickle juice, syphoned from a jar of gherkins, because I read somewhere that, in experiments, a high proportion of athletes found it more effective than plain water at reducing cramps (because of the electrolyte content).

You’ve GOT to be desperate to drink vinegar! I like it, but not to drink!

By sheer coincidence, I’m seeing the neuro tomorrow. Unusually, I will be limping - I think the first time he’s ever seen me like this - because these cramps have caused actual injury.

Obviously, I need to discuss todays events, and explain that, although my walking distance is excellent, the after-effects are becoming uncontrollable.

I just caught sight of myself in the mirror, and it’s a scary sight - white as a sheet, and hair all matted with sweat from the pain.

Obviously I can’t just leave this.

Any suggestion what I should be asking for?

Tried gabapentin - did nothing for anything.

Should I ask to up the Baclofen, even if it’s only for “special occasions” (walking days)? My previous neuro thought I was on too much already, but although I can still walk 3-4 miles, it’s failing to control the cramps.

Now what? I’ve never tried childbirth, so can’t compare, but think they’re easily the worst pain I’ve ever had to deal with. I know nobody ever died of cramp - one of the few things about it to be grateful for - but I can’t cope with the agony.

Don’t want to speak too soon, but pickle juice might be working, by the way. But there has to be a better solution than pickle juice! I hope the answer isn’t: “Well don’t walk 3.5 miles, then!”, as my neuro was very keen for me to persevere, and claims it’s better than anything he can prescribe. I’ll be very disappointed if the answer is that I just can’t do it any more, but I can’t go through this every time.

Tina

xx

I feel for you Tina.

Although I get regular cramps, they’re never as bad as the pain you’re describing here today.

I’m afraid I can’t really offer any advice regarding medication as I rely on Gabapentin, which you say doesn’t work for you. I hope someone comes along who can suggest something.

Meanwhile, whilst it’s not terribly ladylike, have you tried a couple of blasphemous expletives? I always find them a great help.

I’m just sorry that’s all I can offer.

Ben

Hi Ben,

Oh, I was doing the blasphemous expletives good and proper! It has been scientifically shown that they do boost pain tolerance, but only in people who don’t regularly swear. It has to be a word you would normally regard as taboo, for it to have any effect. If it’s a word you routinely use anyway, you don’t feel the benefit. I’m not a regular swearer, but it’s definitely got worse since the MS. When these cramps strike, I do let rip. There’s no-one else in the house, and the neighbours were at work, so I don’t think there was anyone around to hear me and be shocked (or not, as the case may be).

If anyone was listening, it could only be God, and I hope he would excuse me in the circumstances (even if his name might have been taken in vain a few times).

The cocktail of stuff I eventually took - all washed down with pickle juice - seems to have helped, by the way. I’m still very cautious of sudden movements, as I can sense the potential for a bad cramp is still there, and it won’t take much to set it off. But as long as I’ve been very careful, it hasn’t done it any more.

Tina

Hi Tina,

I don have experience of MS related cramp so don’t know if this will help but Potassium containing food can help as low potassium levels can cause cramp. Bananas & oranges contain potassium.

Quinine can also help my sister suffered cramp a lot when she was pregnant and swore by tonic water.

Like I said I don’t know if these things can help MS related cramp. Hope the cramp leaves you alone to rest now.

Snowqueen

Well I’m glad you’re feeling a little better Tina, but pickle juice? I’ve never heard of that, surely the last resort of the desperate!

Good luck with your neuro tomorrow, he may come up with something.

Ben

Hi Snowqueen,

Those things may help, but only if it’s quite mild. I’m already on prescription quinine (hundreds of times stronger than tonic water), but it wasn’t touching it.

Nothing was touching it. I couldn’t massage the leg, or do anything with it - the muscle goes like concrete. Sometimes I have visible injuries (bruising) afterwards, because it’s cramped so tight it’s torn the muscle, causing bleeding.

Can’t see that this time, but it might be there by tomorrow morning, in which case I’ll have something to show him, and be able to say: “Look, this injury was caused by cramp! Do you agree with me we’re not managing it OK?”

They think I’m already on a lot of stuff, for somebody who “seems fine”, but there’s no point being able to walk three miles if you’re going to be in agony the rest of the day for it, is there?

It’s such a shame, as it spoilt a really lovely day. I was so pleased to bump into my friend I hadn’t seen for ages, and that I’d made the effort, and not sat at home in front of the computer.

The neuro is really very keen for me to do the walks, as he says it’s better than anything he can prescribe. But not if I have a really miserable time afterwards, it isn’t.

It’s odd, as there’s no sense of having overdone it on the walk itself. Everything goes fine. It’s a couple of hours later, when I’m home and resting.

Tina

x

Oh Tina.

I can’t offer you any advice as I suffer the same and I wake up most nights with terrible cramping pain in my legs. The day after I get the numb feeling that I posted about yesterday.

Really horrible feeling and it makes me so tired so I know how you feel and am sending you (((hugs))).

Sorry I am not much help.

Shazzie xx

In case you’re interested, pickle juice evidence:

http://runnersconnect.net/running-nutrition-articles/pickle-juice-muscle-cramps/

(There’s a stupid ad for a course, but after a moment you can scroll down and read the article without having to subscribe).

I always thought it was the electrolytes in pickle juice, but interestingly, the theory here is the acidic juice somehow “shocks” the CNS out of a fault condition (we know it’s a fault condition - we’ve got MS) which was instructing the muscles to stay contracted!

Tina

Hi Tina, I could have written your post. I suffer extremely severe cramps and have noticed that when I walk they are definitely worse.

i take solphodal and diazepam. When I get extremely severe cramping I also take Oxynorm which really helps and works quickly, while waiting for the oxynorm to kick in a place a really hot water bottle on my groin and this helps relax the muscles usually after about 20 mins I start to feel better. This is on the advice of my pain management consultant.

like you I found Gabapentin useless and stopped taking it, I can also relate to the White face in the mirror it just shows the severity of the cramps and the effect they have on the body.

good luck with your nuero vist,

ann x

Hi Tina

The last time I experienced muscle cramps similar to what you describe, was during my two pregnancies. I used to wake up in the night crying and my then husband would gently massage my legs.

What you are experiencing does sound really bad.

Do you keep well hydrated on the walk and when you return. Perhaps think of increasing foods rich in calcium and potassium

On your walk days. Milk, bananas and maybe some orange juice.

Good that you’re seeing the neurologist tomorrow, hope he can help.

Good luck

X

1 Like

Thanks Ann,

Never heard of solphodal or Oxynorm. I think they think I’m mad asking about any of these things, as I seem so OK.

But nobody has ever seen me have one of these cramps - they happen when I’m home alone. I was OK all the way around the walk itself - nobody would suspect there’s anything wrong with me.

Then I reach the privacy and safety of home, looking forward to a nice rest, and get struck with this. So it’s never happened in front of the neuro, or in the middle of Sainsbury’s, or anything. It’s when I’m alone relaxing - but usually after doing something.

Never tried the hot water bottle one, although I think I would find it hard to prepare the hot water bottle. Not that hands/arms are affected, but it’s physically difficult to stand, sit, OR lie down, and the pain is so all-consuming that I find it hard to think clearly - except that I must get to the kitchen and take something.

I know this might sound as if I’m being a drama queen - it’s “only” a cramp - but if you get them like this, you know all to well what I’m on about. The pain’s off the scale - I’m in a cold sweat from head to foot, and feeling like I might throw up.

It’s rare each individual episode lasts more than 15 minutes anyway - which is why taking pills after it’s already started is usually too late to do anything, as they can’t get into the bloodstream in time.

But I can have a succession of these fifteen minute episodes - as I did today. Each time I’m starting to think the danger’s passed, another one starts!

If it had happened while I was still out on the walk, I think they’d have dialled 999!

Tina

xx

Magnesium is good for preventing cramp. Google it. PWMS are advised to take magnesium with their Vitd3.

And the best way to get ‘uncramped’ is to point your toes up towards your knee - that stretches the tight twisted muscles into a better shape.

l do make a drink of Apple Cider Vinegar/honey/water - which helps with arthritis and also your bladder - but it is alkaline not acidic. lt corrects the ‘ph’ whatever that is!

l take magnesium at bedtime.

Well, it’s certainly a plausible theory. I’ll maybe give it a try, but I don’t relish the idea.

My respect to the trial guinea pigs, who on earth would volunteer for induced cramps?

Sadly, I’m afraid it’s well beyond the powers of magnesium - which I already take - and certainly well beyond being able to move my toes at all, in any direction, without increasing the agony. I lose all voluntary control of the limb, and cannot even move it manually by force, because the muscular contraction is so strong, and my manual grip relatively weak, so my fingers are no match for cramping of the largest muscles of my body. I am collapsed with this, and in a cold sweat from the pain, which is right up to my groin. Maybe cramp’s the wrong word, because it gives the impression it would be amenable to a little light massage, and some walking around. When it happens, I’m in as much trouble as if I’d actually broken the leg - except that it will eventually pass, and not need six weeks in a cast.

I know - I thought the same! I could only conclude they must have been offered a financial incentive.

I didn’t exactly enjoy downing the pickle juice, and out of everything I’d tried, who’s to know if it eventually made the difference?

But I think I’ve tasted worse medicine, and if you’re in bad enough pain, a gulp of pickle juice doesn’t seem too much to bear - I was glad of anything that might help.

It did seem to calm down after that, but I’d already thrown pretty much the whole medicine chest at it, so who knows?

I was at the “try anything” end of the spectrum. If somebody had said sticking pasta up my nose might fix it, I’d have been willing to give it a try.

Tina

x

Hi hun it kind of sounds to me you over exercised. I mean how often do you walk 3.5 miles lol? Thats a long walk by any standards even if you didnt have MS lol…So as soon as you lay down your muscles go into cramp…screaming cramp.

Personally after a long walk like that I wouldnt go to bed to sleep. Perhaps you would benefit more from stretching exercise like yoga to keep your muscles from cramping up. I find the worse time I get cramp and spasms is when i am in bed after my day, especially after i have been asleep a bit…i wake up and have to take a diazepam.

Maybe you need to do more walking short distance to work up to the long walks and put some yoga in your programme to help keep those mucles supple?

Keep hydrated thats important, and drink a banana smoothie…my sister drinks these when she goes to gym to stop cramping.

2 cups (500 mL) skim milk
1 large banana
1 Tbsp (15 mL) honey
1/4 tsp (1 mL) vanilla extract
Handful walnut pieces (or 7 halves)

Hope you get on ok at the neuro today, i have had mild cramp and thats bad enough. Big hugs.x

Hi Tina,

Unless I’ve missed it, I see no mention of Clonazepam. This is what I take myself with great success and have been taking ever since I had a sudden cramp in my left foot that contorted it so much that when it had eased, I discovered it had sprained my ankle muscles. Similarly my right hand used to seize up during the night. Not only was it painful but I couldn’t unclench my fist. These days I go out on photography commissions which is tough-going on the legs with regards risking of cramping when I relax after it so in that instance I take a dose before going out. I know that some can’t tolerate it it but it’s one of the very few drugs that I can and am happy to myself.

Just a thought and if someone has already mentioned it then forgive me for mentioning it myself

Eiona :slight_smile:

Thanks Eiona - I’m already on Diazepam, which is in the same class, so should have similar effect, but yesterday just wouldn’t stop it at all - nothing would!

That was the scary thing - that I exhausted everything I had available, but still couldn’t control it.

Anyway, off to my appointment now - see what he says. I’m sure he won’t think there’s anything serious if I’m walking 3.5 miles, but I can’t have this afterwards!

Tina

x

Just one thing about Clonazepam 0 it’s 4 times as strong as Diazepam (work fr the MS hug too) It’s also highly addtictive as I found out when my GP refused a second prescription. However my MS Team insisted that was the one for me so the GP compromised by writing down on paper how to titrate it down and back up to reduce the risk of addivtion. That was in 2007 and by today and at my age ( 60) I don’t actually care if I am addicted to it, as long as I don’t go ‘cold turkey’ as before because it works and I really am fortunate ( and dead chuffed) that I’m still relatively monile - ‘relatively’ meaning within my personal fatigue levels.

Again, all the best for the appt.

Eiona :slight_smile:

Footballers and Athletes after a strenuous game sit in a bath of ice! But just getting into the shower and gradually turning the temperature down to cold does work wonders on muscles. Strange thing is that you soon get very warm after a cold shower and the blood vessels start pumping and releasing the tightness in the muscles.