View Full Version : Aches and pains

24th December 2018, 13:14
I have got terrible aches and pains in legs. Never had them before. I suppose it is a sign that this terrible disease is getting worse and just have to keep taking pain killers? :(
I hope you are all feeling better than I am today.
Kayleigh x

24th December 2018, 13:54
Hi Kayleigh;

It is probably something to do with Mnd but you might be able to lessen the pains but having more rest, adjusting the legs position, massage and proper relaxation.

Where abouts are your leg pains and when do they occur?

I've been having relaxation hypnotic playing some of the night from youtube and it helps me in relaxing my hands and lower arms allowing me to straighten them flat on the bed. I have not managed that for over a year.

Love Terry

24th December 2018, 14:15
Hi Terry,
Thanks for your advice.

I woke up this morning in pain all over legs. Took some paracetamol but didn't help much. A lovely friend of mine is going to get me some painkillers with codeine in from chemist this afternoon and so hopefully they will work. I am not very good at tolerating pain but I suppose I will just have to 'man up' about it.

i don't want to be miserable tomorrow and am looking forward to family visiting and so I will rest today. Hopefully the pain is just something that will come and go and will be sorted out by stronger painkillers.

I will take your advice about massage and listening to relaxing music - both sound good to me!

Kayleigh x

24th December 2018, 17:02
I find my legs aching as bits of muscles are taking on the roles of the dead space next door to them

24th December 2018, 17:27
Terry any chance of a link to one of those youtubes would love to uncurl my fingers without leaning on the back of them

24th December 2018, 17:45
The pain in my legs today felt like it was caused by the reason broken nails gave in her post above, and also by pain due to muscles dying. Anyway, whatever the cause, it was not pleasant at all. Luckily strong painkillers have worked.

Merry Christmas everyone.

Love Kayleigh x

24th December 2018, 18:17
Hi Kayleigh,

It could well be spasticity in your muscles causing your leg pain, especially after a period of relative inactivity during sleep - our muscle tone can go quite low or high with ALS. High muscle tone is spasticity and can be quite uncomfortable, but antispasmodic meds reduce tone and thus, pain. Your GP can advise if you need meds.

Stretching the muscles and gentle massage will help to reduce high muscle tone, or a warm bath (if safe) Painkillers won’t really help.

Make sure you keep your legs warm - if you get cold during the night, an electric blanket timed to come on intermittently during the night is great. Also, try not to sleep with straight legs, use a pillow to put a bend in your knees if necessary.

And BTW, there is NO manning up to pain allowed!!! Our lives are hard enough without having to deal with pain too… There are always remedies for pain.

Love Ellie.

24th December 2018, 18:56
Hello Ellie,

Many thanks for enlightening me about the pain in my legs and for the really useful tips about how to combat it.

I think I was panicking a bit today because I have not experienced pain like that before and with it being Christmas tomorrow I was particularly worried about the pain getting worse.

You and Terry have been very kind giving me such great advice today, especially as it is Christmas Eve - I really do appreciate it!

Many thanks and Merry Christmas.
Kayleigh x

24th December 2018, 19:27
My pleasure Kayleigh.

If we can't help each other by sharing our experiences, where would we be?!!

Merry Christmas,

Love Ellie.

24th December 2018, 21:00
Hi Kayleigh,

I really hope your leg pains have eased tomorrow so you can enjoy Christmas day with your family.

My legs are painful and stiff if I sleep well. I guess its because I haven't turned enough in the night. My hubby says to wake him to help me turn but i don't want to disturb him as he does enough for me. If I have had a restless night my legs don't hurt. Strange !

Hope you have a lovely day tomorrow, Kayleigh.
Love Debbie x

24th December 2018, 22:21
Hi Debbie,
Many thanks for your very kind message. I am feeling much better now and am looking forward to Christmas day.

I hope you and your family have a wonderful Christmas and a very happy New Year.

Love Kayleigh xx

Lynne K
27th December 2018, 10:08
Thanks for the discussion on leg pain Ellie and Kayleigh. Some advice for me to think about.

I'm at the stage of stiff restless legs when sitting watching TV or reading in the evening. I get the same feelings in bed. Anyway, in the evening I often get up to do some stretches while leaning on our kitchen units. 4 times each leg stretched for 30 seconds tends to bring some relief.

In bed is another story. I gingerly stretch my legs while trying to avoid cramps. No easy task. It's interesting about not sleeping with straight legs. Unfortunately I cannot lie on my left hip - far too painful. Turning on my side is super difficult. I get knotted up in my pj's, painful. So left them off for a couple of weeks. I got some silk ones for Christmas. These are proving to be easier to move in and less likely to twist tightly around me but not impossible. I digress.

Back to sleeping on sides and my dodgy left hip. If I lie on my right hip it starts off ok, just a bit uncomfortable in the left hip. But I'm usually awoken by serious pain in that left hip. So struggle back to my (painful) back.

My back has been struggling with the new mattress since we moved. Every night I'm in serious pain most of the night. I tend to get up a few times to give myself a break from pain. I know my potential back solution (take the cheap mattress back to Ikea and order a better one). I'm yet to convince my hubby of this, but hopefully soon.

I'm concerned for the future, in relation to possible bed sores, about not being able to lie on my sides. There is no solution to this. Lynne

27th December 2018, 15:20
Hi Lynne,

I hope you and your family had a lovely Christmas.

It sounds like having to a sleep on a standard thin mattress is doing your back no good at all! It must be terrible for you not being able to get a good night's sleep. It sounds like you have a medical requirement for a new mattress and so perhaps it is something that can be provided for you rather than you having to pay for it.

I remember on a recent thread that beds and mattresses were discussed and that some people on this forum have been supplied with them. It might be worth you talking to your OT or nurse to find out what can be provided for you.

I have realised that sometimes it is left to us to ask for things because, unfortunately, is not always the case that what we are entitled to is automatically offered to us. I don't know if a suitable mattress is supplied free of charge to everyone with MND who needs it. It might be a bit of a postcode lottery (as it is with the provision of riser/recliner chairs), but possibly worth enquiring about before you spend more money on replacing your ikea mattress.

I have posted the link to that thread below:-


Best wishes
Kayleigh x

Lynne K
27th December 2018, 17:06
Hi Kayleigh. Thanks for your suggestion but my back problem is mostly because of my severely degenerated discs. MND is exasperating it because I cannot walk regularly like I previously did and it was always the first thing I tried when my back was more sore. The divan mattress on the landlords bed that we slept on for about 15 years was good for my back. It's been the cheapest Ikea foam mattress, and then the cheapest sprung one that have led to my intense pain every night. We just got back from IKEA and organised our existing mattress to be picked up when they deliver our new and I hope suitable mattress. I bought a memory foam mattress topper too. I'll let you know after I've slept on the new set up. It probably won't be here for about 4 or 5 days. We have to wait for a call. Lynne

27th December 2018, 17:38
Hi Lynne,
Great news that you are getting a new mattress and topper. I expect you can't wait for them to be delivered. Hopefully you will be getting a much needed good night's sleep very soon:)
Kayleigh x

Lynne K
27th December 2018, 17:46
Yea I certainly am waiting and looking forward to a much better night's sleep. Hubby backtracked on his (in my opinion) meanness. He couldn't have been nicer. It always takes him a while to come around. Not good for me this time. But we got there in the end. Lynne

27th December 2018, 18:03
Hi Lynne,

Sometimes they don't like to admit that they are wrong - maybe he is not finding the cheaper mattress very comfortable either! Sometimes we go for the cheaper option, only to regret it later.

Main thing is that you will not have to put up with the thin mattress for much longer - and you have ended up with a topper as well as mattress, which will hopefully add considerably to the comfort!

Kayleigh x

Lynne K
27th December 2018, 21:03
You are spot on Kayleigh x

28th December 2018, 19:47
Hi Lynne,

I am also plagued by RLS - Restless Leg Syndrome - every evening from 8pm-ish and particularly in bed.

There are meds which stop it, including Ropinirole, which some people say has a positive effect on MND progression.

I take Pramipexole every night and would be awake all night without it - I can't get up and walk the restlessness out of my legs or even move my legs in bed, so the meds are vital for me.

If RLS is an issue for you and disturbs your sleep, maybe ask your GP about meds.

Really hope the new mattress is good.

Love Ellie.

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