severe restless legs. Awake most of the night.

[carol31271]

Been recently diagnosed with severe restless legs ,Been awake most of the night in pain and having spasms, painkillers have helped, but not enough and probably /hopefully temporary. Anybody else had this problem or any advice when I speak to a doctor?

[Tigglypoo]

Hi i have the same thing burning and pins and needles worse wen iam sitting or lying down dr says nit my circulation. Few months ago I had pelibitis in my vein.I was put on statins which I think made it worse. Iam not sure what else they can do hope you can get it sorted soon

[carol31271 in reply to Tigglypoo]

Due to speak to a doctor soon. Been put on co-codramol which has helped the pain and reduced the spasm ( I was surprised about that ). Hoping there is something else to help as I don't like the side effects.

[C2a2o2]

mine wasn’t severe but I took magnesium Ci rate and it really helped.

[carol31271 in reply to C2a2o2]

Taking it hasn't helped with my legs, but has helped with bedwetting.

[Velocepede]

Yes I have had restless legs for some years. When I mentioned to neurologist at last review she ordered ferratin levels as iron treatment if they are below a certain level can be helpful. Results back indicated I did need to take iron until levels in normal range. Have now been taking furamate for 10 weeks and certainly over past couple of weeks vast improvement. Have to go back for another blood test. Restless legs is the most awful thing as you are desperate to go to sleep but constant movement and discomfort will not allow it sometimes for 2 - 3 hours. I hope you get some relief.

[carol31271]

Thanks I need to chase up the neurologist I was supposed to see them a few months back, so it be worth mentioning that. It really is horrible been in tears at times, out of sheer frustration.!

[suzie44na]

Hi, yes I have restless legs, it is annoying always on the move. I find that if I raise my feet it helps a bit. My bed is electric so I raise the foot end as well as head end of bed. Hope you find something to help.

Suzie

[carol31271 in reply to suzie44na]

Thanks I've got an electric be too & I raise the foot end at night. I usually need a rest ìn the afternoon & do some relaxation /meditation which I've always found helpful , but the feeling in my legs & feet has stopped me relaxing.

[suzie44na in reply to carol31271]

it is awful isn’t it. Another thing is make sure your iron levels are ok, ask your doctor.

Suzie

[carol31271 in reply to suzie44na]

will ask my Gp ,thanks for your advice. 😊

[Ginger1]

This is just a thought - I wonder if cerebellar ataxia causes restless legs? With limbs and muscles not being coordinated? I was diagnosed with restless legs (not severe) long before the cerebellar ataxia, so it's just made me wonder if it's linked. As I have peripheral neuropathy (which is nerve pain), I have been prescribed Gabapentin. I think this helps my pins and needles too. I do know that if I miss taking before bedtime I can't sleep due to more pain, so perhaps it's worth looking into (the web might be a good place initially & chatting with your neurologist). Good luck 🤞

[carol31271 in reply to Ginger1]

Don't know much about çerebellar ataxia as I've got fredrich ataxia, but seems very sìmìlar I take gabapentin for nerve pain if I forget one it effects my sleep. Have looked back on past posts on this site and it's a common problem for people with ataxia ( type?)there's also a healthunlocked for restlesslegs. I do need to see my neurogist again. Thanks for your reply.☺

[Driven1]

Works for me Sifrol, Parkinson medication nps.org.au/radar/articles/p...

[carol31271]

Thanks read the article it was really useful. ☺

[7151]

Hi my legs hurt a lot mostly in thé mornings and i have to wait for strong pain killers to work before i can get up dont know if this is anything to do with ataxia ?

[carol31271 in reply to 7151]

I don't know if it's anything to do with ataxia, My legs can be feel achy ìn the morning.It's usually ìn the afternoon & evening it starts uncomfortable & painful my legs go into spasms & won't stop moving. Maybe your neuroĺogist can tell you?

[7151 in reply to carol31271]

Thankyou i had my 3 rd IRM last week and will see my neurologue in août to know thé results ...i will have yet again à list of things to ask her . . for my physio its thé ataxia ..i saw à remplacement dr hé said nothing to do with antaxia i ve à IRM soon for legs and back ,hé says nothing to do with antaxia could be à nerve in my back ...dear dear no o ne says thé same thing 🙂what à battle ,i ve learned to battle on like us all ..just finished another dossier to have à handicap badge ..that would help à lot..luckily no problème driving.and parking ,the then standing to put my money and number plate in thé parking machine ( cauce of thé trembleing when standing still )then of course walking to thé médical rendevous ...have à Nice day

[carol31271 in reply to 7151]

So sorry sounds rough, is it worth getting a second opinion if things aren't resolved. Had 3 slipped discs after child birth only had problems 8 months later developed ataxia at a similar time ( didn't know this at the time ). I was told trauma brought it on / forward, So maybe it's two things! but really don't know, all the best pain is horrible on top of ataxia. 😕

[7151 in reply to carol31271]

Thanks for info