Worst one yet 8(((

Morning all xxx

This morning I experienced the most prolonged and violent muscle spasm yet!

My whole leg just suddenly spasmed straight out with my foot stuck up and my toes splayed out and up at what seemed an impossible angle!!

I have muscle spasms quite regularly in the legs and round my torso - but they are normally short and sharp - lasting no more than a minute or two - but this one went on and on and on - probably no more than 15 minutes but it felt like 15 hours!!!

It was soooo painful - I just screamed and screamed and nobody or nothing I could do would stop it x I was totally panicking!

I can’t walk on it now as it feels like the muscles have been torn to shreds x

Any advice? I take the usual supplements - potassium & tonic to try to prevent them but any advice on how to stop it when it’s happening? I tried to stand on the cold floor - tried to take big breaths and relax it - tried to pull & push it - nothing worked!

It’s scared the hell out of me to be honest!

I’m on 30mg Baclofen which is helping me such a lot - I certainly know when the next one is due - but guess it’s well worn off by the morning though?

xxxjenxxx

Ouch!!! I don’t suffer from this kind of thing myself, but quite a few people on here say that magnesium can help spasms. Worth a try? Maybe also check with your GP about slightly increasing your bedtime baclofen dose? I hope the muscle pain eases soon! Karen x

Oooooh Jen, that sounds awful. Poor you. I take magnesium and it does seem to help. Xx

Thanks both xx It was so frightening - I was panicking because I thought it would never stop!!!

I do get them regularly in my right leg but they are more like nasty cramps - but ewww! this one was something else! My leg is plastered in deep heat at the mo to try & ease the aftereffects!!! Pongy!!

I take magnesium but only included in a daily multivitamin - I’ll look at the recomendations & get hubby to call for some on the way home!

To be honest I’ve gone downhill rapidly this last week or so - the hug thing is back and my temperature control has gone nuts again - I feel flippin awful!! - I keep thinking I’m going in for a cold/flu but nothing materialising!

Hopefully it’s not the beginning of a ‘long haul’ like last time!

I’ve got an appointment for nerve conduction studies & EMG on the 18th & waiting for another MRI on neck, thoracic & lumbar and waiting for the all important MS Specialist appointment!!

xxxjenxxx

The only thing to note about taking magnesium is to take calcium with it. I can’t remember why…it was my ms nurse that told me. Good luck Jen. I have awful problems with temperature control…when I told my neuro, she barked at me…“you’re 41, it’s your hormones for goodness sake”!!! So it’s nice to know someone else has temperature issues too. Xx

Eww! Don’t start me on that!! lol

I’ve been struggling for at least the last four years! It started when on holiday in Cuba - very hot & very very humid - I became so unwell it ruined the holiday but really didn’t connect it too much to the temperature - I thought I was ill anywaywith some sort of bug or something & thought the heat was just making this worse. Then a few months later we went to Egypt & I went down like a ton of bricks - I spent most of the 2 weeks in our room - only venturing out a couple of times at night. We haven’t been abroad since!

But the worst thing is my body then started to react to cold temperatures too!! As soon as the temperature outside started to drop my body went into obverdrive - it seems to think the cold was hot and set me off on a constant 24/7 intense heat trip! Totally exhausting!

It eventually eased early last summer when the weather was mild and more consistent - it was such a relief and I was only having problems when it was hot (a rare occurance thankfully!)

Then this October/November as the temperature has dropped again it’s triggered it off again - I wouldn’t - couldn’t - have the heating on in the house or the car (gas bills are non existent!!) my poor hubby & son are in coats while I’m in a vest top & shorts with the patio door open - frost everywhere!

It’s horrible - nothing relieves it! It’s constant, exhausting & debilitating! I’m so uncomfortably HOT all the time - yet my right hand and sometimes my foot feel like they are in a bucket of ice!

When it first started a few years ago I was drenched with night sweats night after night and I kept nagging my GP’s because I genuinly thought it was the menopause starting (I’m now 50) - they kept insisting that what I was describing didn’t sound at all like ‘flashes’ - I kept insisting it must be & had regular hormone tests that were frustratingly consistantly normal!

I was then referred to my neurospinal surgeon last November as I had had problems for 16yrs (after an RTA) with my spine & a numb leg but strted with new symptoms in my right leg too - he said it was not mechanical but neurological and gave me an ‘urgent’ referral to a neurologist (Ha to urgent!! An 8 months wait to see an absolute pillock for 5 miutes!! )

At the same time my GP also referred me to a haemotologist as my white blood cells were chronically elevated & I had too many red blood cells - she couldn’t pin anything down but also insisted it’s not menopause related - she then referred me to an endocrinologist but the letter got lost!

Then the beginning of this year I got really ill and a brain scan showed an enlarged pituitary gland but only lesions in my frontal lobe - I have been seeing an endocrinologist for several months having a barrage of tests - he has now also said it’s not hormonal and along with the neurospinal surgeon also believes it’s a neurological problem!

Eww! this is turning ino an essay!! lolol So - basiacally here I am after 4 years still in flipping limbo - waiting for more tests, more MRI’s and a referral to an MS Specialist!!

I so wish I could get some definitive answers - and so wish it was just the menopause!!! xxjenxx

I saw my nurse last month and moaned about the lack of thermostat…she said yes it is very common and no she hadn’t got any advice other than finding a compromise amongst the house members.

Great aint it.

Pip

Hi Jen,

No advice to offer, beyond what the others have said, but just wanted to say you’re not alone. I get these really awful ones once in a while, too.

I had one a couple of weeks ago, from toe to groin: it was agony.

I was lying in bed when it started: immediately, I broke out in cold sweat, so much I had to strip the bed afterwards. I got up (could hobble, sort of) and caught a glimpse of myself in the bathroom mirror, and I was kind of grey, and had very wide, frightened eyes, and thought I was going to throw up.

I normally find I have to force myself to weight-bear, no matter how painful it is, as it seems to be the only way I can coax it to ease of. I took an extra baclofen and half a diazepam immediately I could reach the kitchen (where they were), but I was conscious even as I took them that it was probably a waste, because I rarely find these attacks last more than 15 minutes anyway (though I agree it feels like hours) - not even long enough for the pills to work. But at least it felt as if I was doing something.

This recent one was so severe that, like you, I injured my leg, and was limping for quite a few days afterwards. I got really scared to go to bed, in case it was the start of a new pattern, and would happen again.

But so far, there seems no rhyme nor reason to them. Having one does not seem to mean I’m more at risk in subsequent nights, thank goodness.

I have found liberal swearing helps make the pain slightly more bearable. No, I’m not mad - it’s been proved that giving vent to expletives can improve pain tolerance - though my neighbours probably don’t appreciate this at 3 a.m - but at least there’s no-one actually in the same building.

I also try to force myself to take deep breaths, and I recite: “Nobody ever died of cramp, nobody ever died of cramp…” to reassure myself it’s not life-threatening, and will pass.

Looking back into the dim and distant past, I remember I used to have the odd one, years prior to diagnosis. I vividly remember lying on the living room floor one Winter night, thinking I could not stand up. I wondered whether I would call an ambulance - which I’d never heard of anybody doing, for cramp, and seemed faintly ridiculous - or whether I’d have to lie on the floor all night.

In the event, it wore off after about 15 minutes, just like the ones I get now. I suppose they have got more frequent over the years, but it’s still only once every few weeks. My fears that it might become a nightly thing have so far not materialised.

I dont know what triggers them, but I think it may have to do with getting cold. I’ve taken to wearing socks in bed, and I bought a heater for my room. It’s on a thermostat, so I don’t have it up high - just enough to keep the chill off.

Tina

x

Hi kizzydane, Ditto the heat thing. Boy did my gynae laugh when I told him what she said…I had a hysterectomy aged 24 and have been on HRT since but also have an implant every 3 months which keep my ovaries shut down. If the neuro had let me speak, or read my medical history, she’d have seen that for herself. It’s been so bad today, I’ve been standing in a snowy garden in a t shirt to cool down. Xx

Hi guys x

Pip - yes it’s horrible! The only compromise I’ve managed the last week when the men of the house have been whingeing like old women is to allocate spaces! I have turned all the radiators off in the lounge & dining room and have the patio doors open - hubby & son are releagated to the kitchen (hubby) and bedroom (son) - if they want to join me on the sofa then they’ll just have to suffer! I have to suffer when I venture to the loo or to make a coffee so they can too! The only thing is my poor doggy is shivering as she is always stuck to my hip - so she has an extra blanket wrapped round her!! lolol

Tina - you describe it so perfectly! My language was ripe I can tell you! I’ve had a few smaller ones since but no biggy - I took Karen’s advice and took extra Baclofen at bedtime - the cold theory may be right - trouble is with this heat thing I can’t have the radiators on in the bedroom and only have a light sheet over me (hubby is wrapped in 2 duvets! lol) I suppose the fact that I’m perceiving & reacting to the external temperatures all wrongly does not becessarily mean my poor body is - so maybe the cold is making it worse - but nothing I can do about it - if I had socks on I think my body would blow them off!! lol

Catherine - so proves a point eh!! I suppose it’s easy for people to try to blame it on the menopause - but until they experience the intensity and ‘constancy’ of it - and more to the point the totally ‘abnormal’ feel of it - they just can’t understand!! It’s not ‘flashes’ - they come & go - this is every minute of every day & night! I don’t know if you find that standing in the garden in the frost & ice is something that in an odd way relieves it - but do you ‘feel’ it’s not right either - that the freezing cold somehow makes it worse too!! - hard to explain I know!! lol xxxjenxx

Yes, Jen, definitely. It makes my skin cold which is some relief but I still feel boiling inside. Except my feet which permanently feel cold.m