I just want to say how much I loathe coming to bed, lying in bed, getting up from bed. Am I alone in loathing lying down?
My legs are stiff as hell, my feet are swollen like balloons as I can’t lie down for more than 4 hours and I now I’ve developed really painful sciatica down one leg and in my lower back. The Baclofen I take doesn’t seem to help much and all in all I am miserable at night.
Struggling to see my computer in the day at work as I fight to stay awake - so frustrated!
I hate nights, so much so, that if I lived alone I would try to stay up as late as possible, but that’s not fair on my hubby.
Throughout the day, although I have nerve pain etc, there are different means of distraction, but in bed my brain seems to go into overdrive, and the pain in my legs is almost intolerable. I take amitriptyline and Baclofen, but it just takes the edge off it, but if I increase the dose, the following morning I am like a zombie, with my head feeling like cotton wool, so it’s a catch 22.
I’d like to say that it’s nice to know someone else is in the same boat but I wouldn’t wish this feelin on anyone else. I was just wondering what dose of Baclofen you take - I am now on 40 mg a day and I don’t know if that’s an average dose or not…
No, you’re not alone with pains, aches, stiffness, odeama, etc being worse when we go to bed. Like Pam too I take amatriptyline at bedtime to take the edge off pains. If I take any more than 10mg I’m zombiefied all next morning. I wake very early mornings, usually try not to wake my OH and have a cup of red bush tea. I think that just moving around, albeit furniture walking helps to lessen those pains and aches. I also use this hour os so before going back to bed to catch up with emails, etc. At least the time isn’t wasted.
I do empathise with you. What about speaking to your MS nurse and/or GP? Forgive please if you’ve already done this. Just so you know you’re not alone.
I am a bit of a light weight when it comes to medication, can’t seem to tolerate much, so I only take 20mg any more than that, and next day I am zombified. It seems to be trial and error until a dose that suits you is reached, the only advice I would give if you are intending to try more, is to increase very gradually. My ms nurse and GP have told me I can go up to 60mg if needed, but I can’t ever see me getting there, but some people can take that amount without a problem.
Not sure if you are new to the forum, but in case you are, welcome to “our gang” of lovely people, all in the club that I suppose no one would choose to join lol.
If you are unsure, might be worth having a word with either your ms nurse or GP, take care.
Yes, sleep has been an issue. I try to leave it late so I do sleep but end up waking up on the sofa as the sun peeps over the horizon. After two successive falls and visits from ambulance crews, I am promising myself to go to bed at a civilised time. we’ll see! This sort of habit usually leaves me in sleep arrears with late mornings. I was on Amantadine for years. I stopped and found sleep easier. But for years before I had a proper job, I was very nocturnal. I may well be returning to my old habits.
Yep laying here wide awake waiting for pain relief to kick in be for sleep. Wish you luck with finding something, amitriptyline works great but zombies me next day so try not to use to often.
Amitriptyline was working great for me and I usually got a good night, esp if I woke up early. 7am would guarantee I’d be out like a light at 10pm.
Now I’m on a cancer drug that interferes with sleep. Some people take it at night but because of the sleep problem I take mine first thing in the morning. Unfortunately it doesn’t seem to help. I’m still lying there at 1 or 2 am trying to sleep.
There’s nothing worse than lying in bed unable to sleep.
Hi Pam, i have just seen the doctor at pain clinic. This is me, during the day i can cope with all the nerve pain as like you say you have distractions, but i told him at night its the worse. I can get to sleep no issues as i am exhuasted, i never sleep in the day. My issue is staying asleep. I always wake up about 11pm. Then all hell lets loose.
I have tried all types of medication for MS, but they are designed to turn us MSERS into zombies, even the pain clinic doctor agreed with that. He said all they do basically is shut our brain down, and we end up really tired in the morning, and out of balance and fatigued before we start.
I am a light weight on meds too. I only take one 2mg diazepam and a paracetamol when i wake up. Sometimes it works others it doesn’t.
Weirdly if i have a horrible night i have a good day, if i have a great night i have a rotten day lol…stupid MS.
Oh one thing i must share. When i started this long journey my GP got me a blanket cage for my legs. Basically its a metal cage which keeps the bedding off your legs. I found that the bedding would make me hot and this would make all the weird stuff worse at night.
Although it doesnt stop it completely it does help as it keeps my legs cooler. I can highly recommend trying one. I dont use mine right i put the whole cage in the bed lol and its bliss.
You can get the blanket cages on Amazon - they do keep the weight off your legs if they are sensitive. l find taking magnesium at bedtime - or massage magnesium oil into your legs will help with pain and sleep. Do not use magnesium citrate as it is a strong laxative. Malate - Glycinate - are best.
Google - Painful legs - magnesium - MS. see what comes up.
Thanks for all your thoughts and replies. I find it difficult to type in the dark and not disturb my hubby soI don’t get on the forum too often! I may try magnesium as I have read quite a few are taking it…not too much though…
Just thought I would share that I have just bought a very cheap roller massager for Tiger (a shop in Derby Intu - not sure if they are nationwide) and just running it up and down my numb legs and feet felt great - i will try snd use it everyday as it seems to have lessened the numbness/relieved the dull ache. For a couple of quid it’s made a bit of difference for a while…
Take care everyone - especially through the anticipated heatwave - deep joy!!!