I need to sleep!!

New diagnosis and before diagnosis
1

Hi all

As a relative newbie to the MS world - I still get a bit confused by the terminology. When Gabapentin is used for pain, does this cover all types of pain? ie. burning pain, tearing sharp pains etc?? I’m finding that it is not the pain causing me issues as such, I can deal with that as it is currently.

I have constant burning in both legs at the moment which varies in intensity throughout the day. The longer I’m up and the more I do (just normal stuff, househould/dog walking/shopping/cooking etc) The more it burns! I also get crampy feelings and stuff.

But the minute I stop and go to bed, the twitching and electric-y spasms start in my legs and groin- resulting in a total of about 12 hours sleep over the last 4-5 days which is the bit I’m finding hard to deal with. The spasms are so sudden that all my back muscles go tight!

Is this spasticity, or spasms??

Dealing with a new diagnosis is one thing…lack of sleep I cannot cope with. I don’t feel particularly stressed, in fact I don’t feel much of anything at all considering the year I’ve had. I feel as though I should be feeling more, emotionally, it’s rather odd.

Amitriptyline has not helped at all, and have trialled CBD purple oil too, with no noticeable benefits.

I agree with trying to avoid meds where possible and am in no rush to try gabapentin etc.

Any tips anyone??

I don’t know if I’m relapsing as have had symptoms of some type for over a year in various bits of my body!

Still waiting for Neuro diagnosis letter, he seems to think RRMS as I have had subtle symptoms for the last 20+ years which have been shortlived and remitted 100% - but am also confused about this as I don’t seem to be remitting at all now.

Blaahhhhh!! Sorry I’m insensible with lack of sleep. Soooooo tired but it just won’t happen!

Have to be up and out at 7.30 tomorrow (today??) for a craft fair to help my 14 yr old daughter fundraising to go to Africa.

Oh joy

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Hi, Spasms and spasticity are both the result of the wrong messages getting to the muscles. Spasms are involuntary movements of muscles. Spasticity is when muscles are contracted and become tight. I’m not going to comment on the other parts of your post because I don’t know enough about it. I hope your daughter’s craft fair went well. Best wishes, Anthony

3

Hello Minnie

Anthony is absolutely right about the spasms / spasticity.

But you’ve said you are avoiding taking drugs. There are a few that would possibly help, Baclofen is probably the most used and the most likely to be initially prescribed for spasms. Some people find it makes their muscles weaker (the idea of it is that it relaxes the nerves/muscles that are spasming so it’s reasonable that it might). So there are other drugs that people take instead, things like Dantrium and (my favourite for late evening) Cloneazepam, which helps with sleep too.

People who don’t want to take drugs often use magnesium, you can use an oil spray that you massage into your legs. It’s worth a try. I’ve been taking Magnesium Glycinate for a while as an oral supplement, but I don’t think it does much good to be honest. Many people who use a magnesium oil spray think it’s wonderful (I can’t use it because I’ve got super sensitive skin, plus FES electrode pads wouldn’t stick on oily skin).

Then there’s things like stretching and physiotherapy which could help.

I suspect you should talk to your GP about possible drugs that might help with the spasms and would then help you sleep. Sleeplessness is going to have an effect of fatigue levels too. So initially, maybe while you investigate some other non drug means of dealing with it, some drugs that would calm your legs and help you sleep might be an answer.

In terms of relapsing remitting, don’t write it off as a diagnosis. Many people do find they think they’ve moved on to being progressive and then have a big disabling relapse. Having an RR diagnosis would probably qualify you for disease modifying drugs (DMDs) which would be worth taking to prevent relapses. And remission isn’t always complete, people can either have RRMS when the relapses just don’t entirely recover or they can take forever to remit.

Don’t beat yourself up over the new diagnosis taking time to settle in. It’s a big thing to be diagnosed and it will take a while to get used to it. Keep asking the questions you have, we’ll keep trying our best to help.

Best of luck.

Sue

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Oh I feel for you with the back spasms! Had a week of it. Tried solpadol, nurofen, voltorol gel, vallium, all without any relief. Finally dug out husband’s lidocaine patches. Jackpot. Oh the blessed relief of being able to stand upright (almost) and not make involuntary noises with each spasm/contraction. I’m seeing my gp next week and intend to get some prescribed for myself.

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Thankyou Sue, much helpful insight as always!! I’ve just looked at Clonazepam on the ‘NICE’ site and it would seem just right for myoclonus (in my laymans terms - loads of blummin’ irritating spasms)

Side effects sound a bit risky though! I can see me being a bit trial and error at the GP for a while and buying an annual prescription certificate as I keep using half of something then trying something else!!!

Hopefully I may get an MS Nurse to talk to soon, our hospital are trailblazers re. MS treatment & research but rubbish at getting timely letters out to newly diagnosed patients so still awaiting details etc.

Thankyou Anthony, it’s so helpful to be able to ask all my silly questions on here and know that someone will be able to answer and clarify :slight_smile:

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I take Cloneazepam (which is why I know what it does and what effects it has). And I’ve not had any side effects. It was first suggested by my rehab neuro (who is ace at drugs) and it does a damn good job of just calming everything down, spasms, tremors, and sending me to sleep.

It’s worth asking your GP and giving it a go. And no, I don’t have shares in that particular pharmaceutical company!!

Sue

1 Like
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Sue, I ideally want something I can take adhoc rather than daily, as I like the idea of using pharmaceuticals only when needed and of course I’m hoping may have periods of time without any particular symptoms! Can you take Clonazepam just as and when or does it have to accumulate in your system to work?? (I’ve come to the conclusion that people who actuall take stuff may have more reliable info than the gp!)

Thanks, Minnie

8

Hello again

I can’t see any reason why you wouldn’t be able to take a drug like Cloneazepam on an as and when basis.

But talk to your GP about what they suggest, don’t be surprised if they completely disagree with anything we’ve said on here. Try coming at the question from a ‘it’s been suggested that … what do you think, oh Dr Professional?’ Keep in mind that doctors like to do the decision making and prescribing after considering your symptoms/situation.

Best of luck.

Sue

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Ha Ha Sue you must be clairvoyant! Went to GP today to explain about sleep problems caused by spasms - an interesting experience.

I have had only about 20 hours sleep if that over the last 8 days or so.

He pooh-poohed the Amitriptyline prescribed by another GP there (ok…it hadn’t helped much really anyway)

I talked about needing something adhoc with preferably a short half life as have days where I NEED to be able to drive around etc and can’t risk dopiness during the daytime.

Mentioned I had joined MSS Forum which he thought was great - and said a couple of suggestions had been made and what did he think.

He point blank refused to consider (in his words) anything with a Z in it as they are all addictive, so that was a no to clonazepam apparently!

He prescribed Baclofen at 10mg 3 x daily and said it would take a few weeks to kick in with the spasms but should help make me tired.

OK…so I had just told him I needed something adhoc to help with sleep that wouldnt leave me with residual effects too much the next day - so he prescribed Baclofen which he said should help me feel sleepy and said to take 3 x a day???

??? Feeling baffled and un listened to!!

So I asked if I could please have a few Zopiclone to help out a little with sleep until the spasms could hopefully be improved - and he gave me a prescription for 5.

I am a perfectly responsible and sensible 50+ lady who has used Zopiclone sensibly over the last few years at an average of probably 20 doses a year - and he said I can’t have any more as they are addictive

Feeling upset and patronised really.

The daftest thing is that the last GP I saw for my last prescription of Zopiclone offered to put it on repeat ! These are all different doctors at the same surgery. I said no, and she said she’s put it on ‘acute’ so I could just phone and ask for it.

Why can GP’s not understand that warm milk and a cookie do not help insomnia caused by bloody MS???

Feel better after a rant. Have new mattress being delivered tomorrow so tomorrow night I will be having a bath, putting on new PJ’s and spoiling myself with a good book, a Zopiclone and my new mattress - a far cry from my old Friday nights I have to say!!

Has anyone tried taking Baclofen just the night time dose??

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Hi Minnie. I’ve recently gone from being an insomniac to just soundly sleeping for 8 to 10 hours!! No explanation. I’m on baclofen, 10mg x twice a day. Neurologist told me I’m the best judge of how to manage my dosage. To increase if necessary. I’ve considered taking the day’s dose at bedtime before, ie 20mg. Maybe you could try 10mg in the morning and 20 before bed? I take my second tablet just before bed and I find magnesium spray rubbed into the affected area, works brilliantly for the spasms and helps me sleep as well. Double whammy. Two weeks ago I was suffering from really bad back spasms. Tears rolling and involuntary noises being forced from my lungs! I was prescribed diazepam. It worked for me and I only took it for 3 days. I’ll keep it for desperate times. :slight_smile: We just bought a new bed today and I’m looking forward to it being delivered Tuesday. Zzzzz

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Doctors are so contrary. Some are happier to prescribe than others. At least you now know which doctor to see in your practice!

I take a whole bunch of drugs your doctor would disapprove of Minnie. And they are all on repeat: Baclofen, Amitriptyline, Cloneazepam & Zopiclone

I don’t overuse anything. And as for drugs that have the potential to be addictive, I haven’t increased the dosage in several years. In fact, I’ve decreased the Baclofen a few years ago when I started Cloneazepam because it helped with spasms. So didn’t need as much Baclofen. I am especially careful re Zopiclone, so I always have a few nights a week without any.

In terms of your prescription for Baclofen, try just taking it later in the day to start with. Some people do find Baclofen makes their muscles weak, so take it easy to begin with.

At least you do have the prescription for Zopiclone available to you. I really hope the new mattress, bath, PJs, book and Zopiclone does the job and you sleep until midday on Saturday.

Sue

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Thanks …at least Midday! I picked up a voucher on Wowcher for a 2 course meal at F&B so I think hubby and I might go wild this weekend!!

I might come and join your GP practice :smiley:

Can MS Nurses prescribe? Just out of interest…

I felt like a naughty child at the age of 51 in front of a 12 year old GP this morning!!! Thanks for the advice

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MS nurses can’t prescribe, but they can make suggestions to your GP. They will help you to choose a disease modifying drug. And liaise with your neurologist.

Go absolutely wild this weekend, then have a lovely long lie in. I recommend gin for relaxed muscles and decent sleep. Plus maybe a glass or two of nice wine. (Nb I am an official ‘cheap date’ so only one gin and a couple of small glasses of wine does the job for me!)

Sue (also aged 51 - don’t doctors get younger and younger?)

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Sue,

everyone seems like a 12 year old to me these days!