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Sleep Deprivation

Hi All,

I am feeling down this afternoon. I have been really positive for a while now so it has taken me by surprise. I am off sick at the moment as I had Lemtrada the week commencing 13th July that week went fine. I had sleeping tablets the week of my treatment to counteract the effects of the Methyl Pred.

I haven’t slept normally since, my fatigue is dreadful, meaning my neck, shoulder and head pain are also crap. I did get warned I might get a flare up of my previous MS Symptoms so I’m telling myself it’s that. I’m frustrated and sad. I WANT MY LIFE BACK!

Sorry for the negativity. When I try and tell friends and family how I feel it just makes them sad and makes me feel bad. I don’t want to be self pitying and keep telling myself there are others far worse off. Today is the first time for a long time that I’ve properly cried but now I have I’m finding it hard to pick myself back up.

Snowqueen

Thank you Anon,

i know you are right that I need to focus on what I have achieved not the negative, think it’s partly sleep deprivation making me loose my grip.

No I’m not taking painkillers because they have never touched the pain I get in my neck, shoulders and the back of my head. Tiger balm helps and I’m using that, I haven’t had my weekly massages for two weeks so roll on Thursday as that’s scheduled this week and does help.

i am using my mindfulness meditation CD to help me relax at bedtime which also does help to get me asleep. It’s staying asleep I have a problem with which is driving me crazy.

Snowqueen x

That is what a professional counsellor is for. You give them some money and then you let it all spill out and you say the unsayable and you rail and sob and use up their (always lavish) tissue supply and you don’t care that your face looks like a wet snail and they just sit there and listen without being shocked, distressed or even surprised. Better still, they refrain from oppressive shows of sympathy and the making of fatuous suggestions about how to make a b awful situation nice and comfortable and OK again. And somehow, don’t ask me how, it seems to help. Worth every penny, I tell you.

​ [quote=“SNOWQUEEN286”]

I don’t want to be self pitying and keep telling myself there are others far worse off.

[/quote]

Sod that for a game of soldiers. There is indeed one person in the world who cannot say ‘there are always others far worse off’ because actually there aren’t (and the Lord help that poor soul) but I doubt whether being able to say ‘there are always others far worse off’ would have made him/her feel any better anyway because it never does. So ditch that line, I would - it’s the road to no town.

I hope you are having a better day today. Sleep deprivation just sucks and nothing looks its brightest at 0400 when one has the opportunity to consider life’s banana skins at length, and the next day is never much fun either, and the longer that goes on the worse it feels. Thank heavens that it doesn’t last for ever, though. Hang on in there!

Alison

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Yes we can always think of someone better off than us…but sometimes we need some tlc and a chuffing good cry!

here`s some virtual tissue hun…

pollx

Thanks Alison and Polly,

​I’m more calm today but still exhausted.

​I have been referred to the Psychologist by my MS Team I’m just waiting for the appointment.

I took control this am and got an extra appointment at my MS Centre for a massage I’ve kept my Thursday appointment too. I have been experimenting with pain meds today to see if I could stop my neck, head and shoulder pain. Massage normally sorts it but today it was still sore.

I got given a Baclofen prescription for foot spasms I was getting but TBH I was too scared to try it as they warned me because my tone isn’t increased I may find it makes me too weak to walk. Mum has suggested I try it tonight at bedtime because it might help my Neck & Shoulders.

I am hoping for a better night tonight, but I have decided I will see my GP tomorrow as I can’t carry on like this.

Snowqueen

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There’s a fighting chance that the Baclofen will help you to relax into a good night’s sleep (I have not been on the drug myself, but that seems to be what people say). This sort of effect can be a darned nuisance with many of the drugs we get, but sometimes it is just what’s needed!

I hope that you have a more restful and restorative night.

Alison

Hi All,

Feeling sad and fed up this evening. My neck is awful tonight. Thought I had my neck pain sorted I’ve been taking Baclofen for 2 nights and because it helped my neck so much I started taking it in the day too. I had another massage today and she said my neck was tight.

I saw the GP yesterday who said it was fine to use the Baclofen short term but not to take it long term. She agreed it seems muscular. I have experimented with pain killers but nothing works. She also added that if I fail to sleep I should take the sleeping tablets again for a couple of days. All the GP could suggest was to sign me off for another 2/52. I told her I feel I need to go back to work so she said she would leave that up to me. I guess I’m frustrated and sad because after today I know I can’t go back next week. I am thinking I am having the pseudo relapse I got warned about.

I am now sat up in bed trying to unwind so I can sleep, I’ve tried stretches but it just won’t relax, been getting pains in my hands this evening too. All suggestions welcome.

Snowqueen x

Sorry for your predicament because lack of sleep is awful… get some sleeping tablets into ye and try to get some rest - i know how difficult it is but when you are sleeping you are healing…when your not sleeping, it can lead to depression and God know’s what else…

So I have given in and admitted I am having a pseudo relapse post treatment so I have taken the GP up on her extension to my sick note and told work.

After initially working the 5 mg of Baclofen stopped working and my pain was back the worst it has been. I have increased the Baclofen to 10mg but still get the pain. My new spike mat and pillow arrived yesterday, (recommended by a friend) this does work to help the pain but the positive effect is short lived.

Redman thank you for your kind words and advice.

Snowqueen x

You haven’t been diagnosed very long and you’ve just gone through serious treatment. You need to be kind to yourself.

I’ve recently had Lemtrada and felt exhausted at first. Its normal. A Flair up of old symptoms is common too. Hopefully things will calm down real soon for you. There is an excellent UK Lemtrada Facebook group which is very supportive and worth checking out if not already. Just hang in there, there is every chance things are going to get a whole lot better.

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