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Restless Legs Syndrome
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Lyrica

Hi I have been on Lyrica for many years not really sure how many as it gives me a foggy brain and I have lost a lot of memories.

I have Refractory RLS. Well they put it under the umbrella of RLS. I have my pain 24/7

They did not know what else to call what I have. Restless legs the brain tells the legs to move but mine well my brain does not tell my legs to move. So I guess they help with a little of the pain but I still have it 24/7. The only way I can get a little relief is by using heat. All night I continually heat water for my hot water bottles

I take 3 mg Sifrol & 150 mg Lyrica. I would not really recommend either of those drugs as I still have my pain

Thank you for reading

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Hello, and sorry to hear you are suffering so much. It sounds like you might have augmentation from the Sifrol and there is a lot of information on this forum and on the internet. I have not experienced augmentation so cannot help with that but just wanted to say your experience of pain but without the urge to move your legs chimes with mine. My consultant said I have 'well controlled RLS' which seems a contradiction in terms and sometimes I wonder if I have RLS at all (I do have PLMS). The pain in my legs is relieved by movement but my urge to lay still so that I can fall asleep is very strong and so I choose not to move my legs about as I know that won't help me to sleep.

Recently I have been on Neupro patches (which are a dopamine agonist like Sifrol) which have not reduced the leg pain. But I have been taking codeine in small doses (15mg or 30mg) and that does help. When I took codeine on its own it didn't help the pain, but seems to be working with the Neupro. Have you tried codeine or any other opiate painkiller? In the UK codeine in low doses is available over the counter.

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Hi Thankyou for your message. Yes I take 2-3 Paracetamol/Codeine 30MG per day. No Codeine alone did not help me either. I have never heard of Neupro Patches I will look into them. I do take Endone when really desperate but I do not make a habit of it. Goodness in Australia/Tasmainia everything with Codeine a Prescription is needed.

Thank you

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I think Sifrol is the culprit here. As Tatiana advises, look up Augmentation. 80% of people augment so you will probably have to get off it slowly.

Read everything you can and get serum ferritin above 100.

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I agree with the others. 3mg of siffrol sounds like a VERY high dose and is likely to be contributing to your problems. You should look out for impulse control issues also like gambling or internet shopping as these are a very real problem with high doses of that drug.

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Ha ha Yes I have been an Internet Shopper but hardly go on anymore. I was on Ropinerole I got through the Hospital Pharmacy but then I came to another State and Ropinerole is not on PBS so they put me onto Sifrol so I am still trying to get the right Dr to prescribe Ropinerole through a hospital pharmacy. Thank you for your message

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Sifrol is pramipexole, and the most recent guidelines from top RLS/WED doctors is not to go above 0.25mg. So, you are on an unforgivably huge dose. Your doctor is completely out-of-date, I'm afraid.

Dopamine agonists cause our already-stressed dopamine system to be overwhelmed, and dopamine receptors either die or 'internalize' into the cells with the onslaught of DAs.

As a result you will get symptoms earlier in the day and they will creep to other parts of the body. Everything will go downhill.

Familial RLS/WED is a slowly progressing condition - very slow - but DAs speed up the misery hugely.

Your hammered brain needs a permanent rest from Sifrol. If you quit- which is not easy, but necessary - you will likely go back to the condition as it was when you started. the drug.

To get off so much Sifrol you will probably need an opioid such as oxycodone or methadone to ease the path.

It can be done - do not despair.

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Thankyou for your message. After reading all about Sifrol here I will be speaking to my Dr next week. Thank you

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I agree with everything that’s been said about augmentation.

The following links will confirm what everyone has been saying. Read them and educate yourself before going back to see your doctor as he clearly hasn’t a clue.

rls-uk.org/augmentation-reb...

sleepreviewmag.com/2015/02/...

Pam

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is it 3 mg Sifrol or 0.3?

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3 mg ER

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please research magnesium deficiency and symptoms of magnesium deficiency also research vitamin d3 and k2 Mk 7 goodluck

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Hi Robert Thank you for your message

I tried 3 years on Magnesium nothing changed it did not even free me from Night Cramps.

I understand D3 but I don't understand K2 or Mk

Would you please write the full word for me ?

Thank you

cdtofi

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d 3 is sunshine vitamin k2mark7 helps calcium get where it is supposed to be bones and teeth can I ask you which type of magnesium you used thankyou

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Sorry it was a while back. All I can remember was I took 1000 mg per day

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please research bioavailability of magnesium as they are all different if the magnesium you were taking had poor bioavailability say 2% 1000 mg would only give you 10 mg if you research magnesium oil you can even make your own for a fraction of the cost even use it in your bath Epsom salts is a form of magnesium good luck ps I use magnesium citrate 400mg per day it has a bioavailability of about 30%

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OK Robert Thank you. I have never had so much information and I have had this condition over 40 years. I am straight onto the Magnesium and the others. Thank you again

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please research foods high in magnesium

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TRI-MAGNESIUM CITRATE 900MG

Is this one too much Robert or should I stick to 400mg

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it might be. you could try it. the magnesium citrate I take is 200mg per tablet if you take 1 aday to start with then 2 aday after a week if you take to much your stomach will let you know

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I use solgar magnesium citrate 200 mg per tablet

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