What next: Nothing is working now. I've... - Restless Legs Syn...

Restless Legs Syndrome

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What next

Coeso profile image
10 Replies

Nothing is working now. I've tried everything that I can. Years of mirapexin then tramadol then pregabalin and gabapentin in turn. Mirapexin worked for years until I augmented and also tramadol augmented. Preg and gaba never worked although I persevered until I reached a high dose. Probably due to being on mirapexin. Anyway as I said I go to bed, up and down all night. I'm taking some Kratom which helps me to get some sleep, but I don't want to rely on it. My doctor yesterday gave me some 30mg codeine with paracetamol. I took it but not much relief. In Greece where I live they won't prescribe bupnephrenin (sorry about spelling) and only drug addicts in a special clinic get methadone. I eat carefully, ferritin is high. Don't know what to do. I'm 75 years old with over 30 years of rls. Any ideas please

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Coeso
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10 Replies
ChrisColumbus profile image
ChrisColumbus

Welcome to the forum: I'm sorry to read of your problems with RLS treatment in Greece ☹️

Others with more knowledge of drug treatment for RLS than I have will be along to advise.

How high is your serum ferritin? And I hope that you're not taking any other meds for anything else that could be triggering your RLS? See this list:

rls-uk.org/medications-avoid

Beyond this, clearly it's a great shame that buprenorphine is available in Greece but that alongside methadone may *still* only be prescribable to treat opioid dependence. This certainly *was* the case. For example, an old EU Drug Agency report I found references:

"In 2011, a total of 92 treatment units offered drug treatment in Greece: 42 OST units (33 buprenorphine and 9 providing mainly methadone)..."

I also found a 2018 reference in the Journal of Palliative Care which says that both buprenorphine and methadone can only be prescribed in Greece to treat opioid dependence.

I was hopeful that things might have changed recently when I found a reference in Greek to buprenorphine which says:

"Usos: Εξάρτηση από οπιοειδή, έντονος Πόνος, μέτριος Πόνος" =

Uses: Opioid Dependence, Severe Pain, Moderate Pain

But I presume that must just be a translation of an article into Greek, and doesn't mean that it can now be prescribed for pain etc...? Confirm with your doctors.

Coeso profile image
Coeso in reply toChrisColumbus

Yes I will. Thank you

Coeso profile image
Coeso in reply toCoeso

My ferritin is over200

Joolsg profile image
Joolsg

I'm so sorry to hear this. Will they prescribe Targinact? It is Oxycontin with Naloxone and is licensed for RLS in many countries.

Coeso profile image
Coeso in reply toJoolsg

I think I have spoken to my doctor about it. He is just my GP but is lovely and tries to help. My neurologist is also lovely but it's the law here which allows certain drugs and not.

TAYLAS profile image
TAYLAS

i know this may sound stupid but itsworking for me ...

ive changed my mindset , i no longer go to bed worrying abut my RLS and not sleeping.....

i go to bed thinking im in bed to watch movies and box sets all night , and after time i drift off.

SueJohnson profile image
SueJohnson

What about cannabis. I know it is not legal in Greece for recreational use but my understanding is that medical use is legal.

Check the amount of paracetamol in your codeine pills. You can take up to 1000 mg at one time every 4 to 6 hours but no more than 4000 mg in 24 hours.

Coeso profile image
Coeso in reply toSueJohnson

Thanks Tonight I'll try my prescription tablets which are 30mgs codeine and 400mgs paracetamol plus a boots chemist neurofen which has 400mgs ibuprofen and 12mgs codeine. It may give me some sleep. Last night I took a small level teaspoon of kratom which helps but I'm a bit scared of taking it. Now I'm so lucky because in the day I don't have any problem unless I sit for a couple of hours. I only took 50mgs tramadol at night Do you think I could increase without a problem or if it is augmentation then I'm doing more damage

SueJohnson profile image
SueJohnson in reply toCoeso

You won't do any permanent damage.

Coeso profile image
Coeso in reply toSueJohnson

Thank you

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