Anyone using Oxycodone?: I've had... - Restless Legs Syn...

Restless Legs Syndrome

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Anyone using Oxycodone?

KikiLea profile image
KikiLea
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I've had severe RLS for years, but I also have Ankylosing Spondylitis so I'm on Tremadol for the pain (can't take anti inflammatories due to stomach problems) the doctors have tried me on lyrica, amitriptyline and ropinirole most recently.

I've only been on it for maybe a month but I think I've already started with the augmentation. Symptoms have gotten ridiculously bad now, I think some might be linked with covid cause I'm just getting over it for the second time. But now I'm at a loss for what I can take.

Last year when I had pneumonia I broke a rib coughing and they gave me oxycodone hydrochloride, ive had a little amount left over so ive been having a tiny bit only when I haven't slept for maybe a week or 2 and the RLS has been unbearable, it seems to be the only thing that works so I'm wondering if the doctor could prescribe it for this.

My only problem is I really don't want to become dependent on it but then again I don't think I've got much choice.

Anyone had similar problems?

Thanks in advance, sorry for the long post πŸ™ƒ

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KikiLea
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Madlegs1 profile image
Madlegs1

Oxycodone ( Oxycontin or Oxynorm??) Will not cause augmentation.It may give rise to tolerance, meaning your body has got used to the dose and needs more to deal with the pain.

I can't make out your exact history, but you may be suffering withdrawals from your medication history. I'd need exact facts to diagnose.

You need to have a good conversation with your doctor. Most are reluctant to prescribe opioids, unless for severe pain. I hope you are Oscar level actor?😜

I'm sorry not to be able to help with your other challenges, but I have no experience with them.

All the best.

KikiLea profile image
KikiLea in reply to Madlegs1

Hi, sorry I've not replied yet. Crazy week πŸ™ƒ

Not sure if it's oxycontin or oxynorm, the bottle just says oxycodone hydrochloride liquid 5mg/5ml if that helps any.

Sorry if I wasn't clear on the original, lack of sleep will do that to you πŸ˜‚

So ive been on tremedol for around 8 years, for my other issues. But my body has a high tolerance for it. The doctors have tried me with pregablin, amitriptyline and now ropinirole, but none of them have worked.

When I broke my rib last year when I had pneumonia the hospital gave me oxy. After my ribs got better I still had maybe a 1/4 of a bottle left over so when my RLS has been unbearable I've taken a very small amount. Maybe once or twice a month at the most. I'm now all out of oxy.

I've been on the phone to the doctors this week and they've done blood tests, everything is normal but hemoglobin on the lower side of normal. The doctor has asked for advice from the neurologist as they don't know what else they can give me.

They have agreed to give me low dose pregablin again until we hear back from the neurologist but I doubt it will work.

Since I've had covid, the RLS is unbearable on a nightly basis, before it was bad every night but most nights I could eventually fall asleep. Now it's on the verge of impossible and I'm about ready to chop my legs off.

I hope that makes more sense πŸ™ˆ and thank you for the reply

Take care

joepublic profile image
joepublic

I take Targinact which is Oxycodone based with a Naloxone component for constipation but you still get severe constipation even with it. The RLS is so much better as a result of this drug I find as I have replaced Ropinirole with it completely.

Nettles68 profile image
Nettles68 in reply to joepublic

Hi joepublic,Well done in removing Ropinirole from your life, a massive achievement πŸ‘

Can you tell me please what dose of Targinact you are on and how soon after your last dose of ropinirole did you feel improvement in your RLS symptoms?

Thankyou.

joepublic profile image
joepublic in reply to Nettles68

5 Mg / 2.5 Mg combo twice a day. I am still working through the death throes of Ropinirole but it's getting a lot easier but no end date for that - it's a suck it & see approach with no patterns to follow. I have bad nights & better nights,

Nettles68 profile image
Nettles68 in reply to joepublic

I'm glad to hear you are getting some better nights now at least and I'm sure with time it will improve further for you! I'm hoping to complete my conquest over the coming weeks! It's been a traumatic slog so far but at last I have some proper help.

Reading experiences like yours gives me heart and hope.

Thankyou! 😊

joepublic profile image
joepublic in reply to Nettles68

Glad to hear - it's a terrible disease that gets little sympathy.

Todge profile image
Todge in reply to joepublic

I have been off Ropinirole for 4 days now. But holy cow.. I am having major mood swings and panic attacks. Are you having any issues beyond a resurgence of your RLS symptoms?

joepublic profile image
joepublic in reply to Todge

No nothing like that.

KikiLea profile image
KikiLea in reply to joepublic

Hi, thanks for the reply.

That's good to know you've found something that works.

I've tried all sorts of different drugs and up to now none have worked. I've only been on ropinirole a month and it's made the RLS worse so I've halved the dose which I have to keep on for 2 weeks before halving again. I'm hoping side affects won't be too bad because I've only been on it a short amount of time but who knows πŸ™ˆ

I had oxy for a broken rib and pneumonia last year. I had some left over so have been taking it only when the RLS is unbearable and its the only thing I've found that works.

My only issue is trying to get the docs to agree to prescribe it me πŸ™ˆ

BeachGolfer profile image
BeachGolfer

I started on Oxycodone 5mg eight years ago. I switched to Mirapex 2015 until I had augmentation in 2019. Back on Oxycodone same dose since then. I see using an opioid as treatment not dependency. My dose has not increased. I use high amounts of CBD without THC for sleep. I wish you well.

in reply to BeachGolfer

I am also on oxycodone targinact have been for a few years but i find i cannot eat with it and have lost 21lbs in the last few weeks also it has given me insomia also the slow release is not lasting 12hrs and the rls kicks in early evening so have to top upp with 10mg of oxycodone liguid i am trying to wean off the oxycodone as it makes me lightheaded have a appointment with a private neurologist as cannot see a gp hope to get some results do you have any side effects

BeachGolfer profile image
BeachGolfer in reply to

Fortunately, I do not have any side effects from the Oxycodone. I have insomnia but I had it before starting the Oxycodone. I feel that my insomnia is related to the RLS. Prescription medications have not helped the insomnia which is why I’m using high doses of CBD. I would be saving a lot of money if medications worked as my health insurance ( in US) would cover most of the cost. :(

in reply to BeachGolfer

What cbd oil do you use,as i live in England i can only by cbd oil from health stores also what dosage do you take and how much

BeachGolfer profile image
BeachGolfer in reply to

I use Syncronicity brand which is a FULL spectrum oil not Broad spectrum. I’m currently using two 50 mg capsules about 2 hours before bedtime then one 50 mg capsule at bedtime. It’s not perfect as it varies from one night to the next. I order online but they may not be able to mail out of the US.

KikiLea profile image
KikiLea in reply to BeachGolfer

Hi beachgolfer, thank you for the reply.

Yes I'm the same with my tremadol, I've been on it for 8 years for Ankylosing Spondylitis but haven't increased my dose. If anything I take less now. Just enough to keep the pain at a tolerable level, but because I've been on it so long it does absolutely nothing for the RLS.

I'm hoping my GP will hear back from the neurologist soon and prescribe the oxy. Everything else I've tried hasn't worked.

Do you find the CBD works well? I haven't tried it myself but have heard about it.

Take care

Dougg profile image
Dougg

I'll add that I too use oxycodone sometimes for RLS. It used to be my only remedy and I was taking about 25 mg a day. I discovered Kratom and was able to cut way back on the oxycodone, although I still use it lightly. I agree with BeachGolfer in seeing it as treatment rather than dependency. While I know that opioids can be addictive, I personally believe that there has been a lot of over-hyping around that aspect, which has unfortunately led to docs apparently not willing to prescribe oxycodone even when it's the only thing that will work and is, as I understand it, an acceptable medical response to RLS. I believe there are papers on the Johns Hopkins web site supporting the use of opioids in treating RLS. You may want to look there for supporting information to take to your doctor. Good luck!

KikiLea profile image
KikiLea in reply to Dougg

Hi Dougg,

Thank you for replying.

I definitely agree with you about the hype. I've been on tremadol 8 years and cause its an 'addictive opiod' the doctor had a fit when I asked if increasing it would work while we wait for the neurologist to get back to us. I take a lower dose than is prescribed just to keep pain for another medical condition (AS) at tolerable levels. It has little effect on the RLS. I've found oxy to be the only thing that works.

Thank you for the info ill have a read and see if it will help getting it prescribed 😊

Take care

LotteM profile image
LotteM

I used oxycodon for about a year, I think. The slow release form Oxycontin together with naloxone (brand name Targinact) is licensed in the EU and I believe also in the UK for RLS. There is a good overview paper on the -very effective- use of opioids for RLS: mayoclinicproceedings.org/a...

I now use buprenorphine.

KikiLea profile image
KikiLea in reply to LotteM

Hi,

Thank you for the reply. I'll have a read.

It seems oxycodone is an acceptable medication when all else fails. Fingers crossed my GP will agree 🀞 take care

KikiLea profile image
KikiLea

Thanks for the response guys, sorry its been a crazy week. Not helping much at all with the complete lack of sleep and me walking around the house in the early hours like a crazy person πŸ™ƒ

Ive been on the phone to the doctors a few times this week. Had a tonne of bloods which have all come back virtually normal. Hemoglobin on the lower side of normal but that's about it. Doctors have sent a letter to the neurologist to see what else they can give me.

Docs really reluctant to change my medication but they've agreed the ropinirole are likely making it worse so currently on half the dose and slowly weening off it.

I've asked they give me something to help and they've prescribed a low dose of lyrica/pregablin 50mg twice a day which I can pick up tomorrow. At least until the neurologists get back to them.

I dont think its going to work but it's so bad at the minute I'm willing to try anything again. I really think oxycodone is the likely only thing that's going to touch it but again as its an addictive drug so they don't want to give it me.

I can see what they mean but I've been on tremadol for 8 years, still only taking a low dose and only take up to the prescribed dose if I'm in lots of pain. So going on oxy isn't as major as they make out it to be.

I've taken double tremadol tonight to try and get rid of this nasty ache/crawling but it's not helping. πŸ˜”

Does anyone know any tricks I could do to ease it even a little?

Thanks again for the response, I'll read through them all properly as soon as I can sit down long enough without wanting to chop my legs off πŸ˜‚ xx

Madlegs1 profile image
Madlegs1 in reply to KikiLea

Try taking some Acetaminophen/ paracetamol along with the opioid. I take 250 to 500 mg whenever I feel the Oxy isn't cutting it.Good luck with everything.

Nettles68 profile image
Nettles68 in reply to KikiLea

Hi KikiLea,

I believe Tramadol can cause augmentation (a worsening of RLS). It is the only opioid to do this.

You may need to consider removing Tramadol slowly and replacing it with something else like oxycodone.

Have a word with your doctor about this and see what they think.

I really hope you get some relief soon. Out of control RLS is no joke I know!

KikiLea profile image
KikiLea in reply to Nettles68

Hi Nettles,

It is horrendous, I haven't slept more than an hour or 2 all week. It's currently 4am and I'm so uncomfortable I could cry, I swear it's getting worse every night and now I've got it in my chest as well as my legs 😭

Last time I spoke with them they were wanting to wait for the neurologist to get in touch before giving me anything else, but I'm not sure I can wait that long to be honest. I'm going to ring them again when they open to see if they can give me something stronger.

I didnt know tremadol could do that too. Saying that I've tried not taking my nightly dose to see if that helps but I've had no luck.

Thank you for replying. Fingers crossed the doctors will give me some oxy or something tomorrow.

Nettles68 profile image
Nettles68 in reply to KikiLea

I'm so sorry that you are having such a dreadful time! It really is miserable isn't it!

LotteM sent you a link for the Mayo clinic opioid study paper which shows the safety and effectiveness of opioids when used for refractory RLS.

I would print a copy of this off and take it to your GP.

I am currently on 40mg of oxycodone daily while I withdraw from years of Ropinirole use. This was recommended to me by leading RLS expert Dr Mark Buchfuhrer.

He recognised my symptoms were severe and the 25mg daily I had been prescribed were barely touching my symptoms!

Thankfully I found a GP who listened and agreed to help.

The 40mg I have been prescribed helps but still things are tough and symptoms severe at times.

You may need to persist in finding a GP who is willing to listen and help.

Also print off the latest Mayo clinic paper July 2021 "The management of restless legs syndrome : an updated algorithm."

This is an excellent paper with all of the latest up to date recommendations by the world leading experts on RLS.

It really does look like you may have exhausted your options medication wise and a low dose of a potent opioid could be the way ahead for you.

I really hope you get a good outcome and the help you need.

Let us know how you get on πŸ€—

Nettles68 profile image
Nettles68 in reply to Nettles68

Also I mentioned to both the neurologist I saw and my local GP that there are now many members of the HealthUnlocked RLS forum who are prescribed either oxycodone or buprenorphine to help with refractory RLS. This seemed to generate a surprised reaction but also I felt made them listen.

I urged them to take a look at the forum.

Hope this helps 😊

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