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Restless Legs Syndrome

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Up all night

silleecharle profile image
13 Replies

Tonight was the first night in over a week since taking 30/500 for back pain that iv went without and iv been awake with my legs jumping terribly, i thought the tablets helped my rls but now I'm convinced they do, just curious if the over the counter strength work, anybody find something similar works.

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silleecharle profile image
silleecharle
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13 Replies
Madlegs1 profile image
Madlegs1

Why are you taking such high dose of Acetaminophen? Do you actually need it compared to the opiate?

silleecharle profile image
silleecharle in reply to Madlegs1

I'm not sure what that medication is that uv mentioned, the 30/500 iv taken is a doctor prescribed co-codomol dissolvable tablet, I can buy at the lower dose of 8/500 otc which i was wondering if it wud help the rls the same way

Madlegs1 profile image
Madlegs1 in reply to silleecharle

I don't know eithet because you didn't inform us. 😞

Generally those split dose meds areade up of an opiate and Paracetamol/Acetaminophen

This mix is not generally recommended because of too high P/A.

Pippins2 profile image
Pippins2 in reply to silleecharle

Silly charlie, it is doubtful that the tiny amount of Codeine in the over the counter Co -Codamol would be enough to help RLS. It would be preferable for your doctor to prescribe you just Codeine so that you are not taking the Paracetamol as that won't help RLS.

Pipps x

nightdancer profile image
nightdancer in reply to silleecharle

I think it would be a good idea to find out what med was in the IV, I am guessing a morphine drip? One thing I have learned, I do not allow any meds to be given to me in the hospital unless I know exactly what is. Odd that Tramadol made your RLS worse, it is usually a 90% fail safe med for most of us, as long as the dose remains reasonably low. I used to take it for back pain, and it was "magic" for my legs. I only stopped it when my pain control was suffering. So, now am on slow release morphine and other pain meds that are not available in the UK. Pippins is right, the over the counter med, is such a small dose, it is not going to help any RLS that is anything but extremely mild, hate to say it. But, as we always say, it is all trial and error and what works for me or anyone else may not help you. The BEST thing you can do is have a candid discussion with your doctor. There must be something that helps you eventually, and if it was morphine in your IV, that is a clue. But, we also do not know your entire history and what you have tried before. That would help, since it is so different for everyone. There is a lot of info on the RLS UK site. I would suggest reading the section on meds, since you ARE in the UK, and not the US site I usually hand out. There is also a list of Drugs to Avoid on the UK web site and that is as important as the ones to use. ;) We sympathize with you, big time and will try and help where we can. I always tell my groups, the more details the better, and this site is totally anonymous, so like I said, the more details the better. I studied pharmacology and psychiatric nursing in school, so a list of meds you take now, would be a huge help to us, just to see what is going on. RLS is so immediate, but treatment comes in baby steps sometimes. ;)

nightdancer profile image
nightdancer in reply to Madlegs1

In the US, we have a med that you do not have in the UK, hydrocodone. My dose is 5/325 meaning 5 mgs of the opiate and 325 of Acetominophen. But, really, 500 mgs is not that high a dose, from the regulations over here. It really is an individual thing and as long as your liver function is fine, then it is reasonable in a combination med. ;) How have you been lately?

silleecharle profile image
silleecharle in reply to nightdancer

Hi nightdancer

I hav been up all night again with my rls, I'm exhausted, il give u a breakdown of my medical history to give a more clear picture, i hurt my back badly in a fall 6yrs ago, wen the pain became debilitating I went to my doctor who put me on the co-codomol/paracetamol tablets along with naproxen and robaxin, after taking these my pain became worse and I started experiencing nerve pain too so my pain relief was changed to tramadol with lyrica for the nerve pain, eventually we had to try morphine slow release because the tramadol which was 50mg x 8 a day was causing me rls, the lyrica changed to amitrypaline then to gabapentin then most recently back to lyrica, in this time I got so low that I was put on 90mg of duloxetine, in the last yr or so my rls became unbearable so we started on top of all my meds quinine, didn't work, pramipexole didn't work so now I'm on ropinerole 1mg at night, all the meds iv previously mentioned iv been weaned off at my request because i was all over the place with my general wellbeing, i cdnt go to the toilet iv put on so much weight I was so fatigued it was no life, I had a spinal operation last yr to release the trapped nerves and remove 2 discs, I'm now seeing a chiropractor to help realign my spine again from my neck dwn as I'm in so much pain, he said I'm in a bad way so I'm getting intensive treatment atm, my only tablet I take is for my rls but it's takin over my life, it controls the social side of wot i want to do, the one thing I tried to regain by coming off all my meds, i was takin up to 25 pills a day, sry if iv went on a bit much but iv tried to include the last 6yrs,

Many thanks

Leanne

Hi, I'm assuming you are in the Uk silleecharle. As you probably know that in our country a combined dose of 30/500 (30mgs codeine + 500mgs paracetamol) is often prescribed for severe or chronic pain relief.

I have peripheral neuropathy and alternate between 30/500 mgs Co-codamol (Zapain) & Tramadol. I alternate approx every 2-3 months so that my body doesn't get too used to either and they become less effective.

8 doses of this 30/500 med can be taken in any 24hr period (check included leaflet for doses) and is considered safe (although to be honest I usually take 4 doses in one day, but am comforted in the knowledge that I can take more if I need to)

I'm not sure if the over the counter dose of 8mgs codeine/500mgs paracetamol would be strong enough, I know it wouldn't be for me :(

Otherwise, as the lovely Pippins says you can ask to be prescribed codeine alone as a 30mgs dose

(that is if you don't want to take the paracetamol dose as well)

By the way "MADLEGS" if silleecharle was taking 30/500 mgs as prescribed by her Doctor for back pain then I'm sorry but I don't think it's up to you question that dosage.

I accept that many doctors haven't a clue about RLS or what medications or doses to prescribe for it but I've yet to meet a doctor who didn't know what to prescribe for pain relief !!

Best wishes silleecharle, I hope you get some relief from your RLS soon.

silleecharle profile image
silleecharle in reply to

Hi booklover,

It's nice to get an understanding reply, iv recently been weaned off a lot of medication for my back pain, morphine bein the main painkiller used but since stopping iv noticed how bad my nerve pain is, I'm still not using any medication for it as I'm trying to give my body a break, the co-codomol was medication i had left from a previous prescription, i only need 2 at nite to help ease my legs, tramadol in the past has aggravated my rls, my nerve problems run thru my body, like a constant electrical current, the ropinerole isn't working but I think il speak with my doctor about the codeine as pippins suggested as the otc strength probably won't be strong enough as I hav a high tolerance due to the tablets iv taken, thankyou for ur advice, it's appreciated

in reply to silleecharle

hiya, I don't get primary RLS, but get secondary RLS from the heart medications I have to take. Something in the meds causes me to have RLS as a side effect of the drug :(

Like you I was also on Morphine for back pain and PN awhile ago but with the help of my very understanding GP and through trial and error was able to come off that, and have worked out a meds regime that gives me the best possible life I can have.

It amazes me though how some meds work well for some but not others, for example Tramadol stops the RLS for me but Cocodamol does nothing, but it's worked for you !

You could try the otc dose and see how it goes. Otherwise have you tried Gabapentin ? I get horrific nerve pain from the PN, but have gained huge relief since being on it I take 300mgs 3 times daily.

I don't know much about Ropinerole or any of the dopamine agonists, but from what I've read on here if they've stopped helping its time to try something else and definitely not to increase the dose or it will lead to augmentation.

Your best help/advice on here would prob be from Pippins, Elisse or Nightdancer, I've learned so much useful information from them, Pippins knowledge in particular got me through a very low period in my life.

Keep reaching out on here, there's always someone listening who understands

take care, Geri

nightdancer profile image
nightdancer in reply to silleecharle

Sillicharlie, you may be giving your body a break, but the sleep deprivation and the effects of that are not doing any good either.

nightdancer profile image
nightdancer in reply to

There are many doctors who do not know how to treat pain, it is a HUGE issue over here and the reason why I am spending more time with the National Pain Foundation, as well as my RLS groups. It all ties in together. Lots of doctors do NOT know how to treat pain, or do not want to, because of the scare tactics used by the US depts of gov't that are scaring the crap out of people needlessly, in a lot of cases. It is making me nuts, but thankfully I have an angel of a doctor, and not everyone has that "luxury" no matter what country you are in.

Madlegs1 profile image
Madlegs1

Just to clarify to everyone- I make the point about overdosing on Acetaminophen /Paracetamol as being extremely dangerous and coming under scrutiny in the medical profession. While it is a potentiater for opiates, it is dangerously overprescribed for most people because of its effect on the liver.

Watch this space.

We question doctors' prescriptions on this site all the time- especially in the area of RLS - where in many cases we know more about it than the average GP.

That is not a criticism of them - they are a highly overworked profession and simply haven't been educated about it in Med school or through ongoing training --While many of us have investigated it thoroughly - unfortunately because of personal circumstances. 😢

Cheers.

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