Restless Legs Syndrome (RLS) Discussion Board

I was taking 5 mg oxycodone at 8:30 pm and would have break through around 4:00 am. I would take 2.5 mg to get me through to the morning.

I have also noted that I get tired in the vending, but once I take the oxycodone takes me out of the tiredness and then I have trouble falling asleep. It’s like it resets me and I am no longer tired. Do others have this happen?

The last few months I have seen changes take place.
1. I am waking up with sever internal tremors in my thighs.
2. I am waking with restless legs multiple times during the night. I have added in 1/4 of a pill each waking to help take away the sensation.
3. I also feel this tremors/restlessness in the early evening
4. I also wake in the night feeling the tremors in my arms and toros

Wondering if this is normal? I feel like I am augmenting on oxy????

I am wondering if methadone might be a better option.

Welcome all thoughts and feedback.

Leslie

You are probably experiencing several things with the oxy, but augmentation is not one of them.

1. You may be starting to develop some tolerance to the oxy, especially since you are on a fairly low dose. 5mg of oxy is equivalent to 7.5 mg of morphine. The starting dose of methadone is 5mg (smallest pill made) and that is equivalent to 15 to 20 mg of morphine.
2. The half life of oxycodone is only 3.5 hrs, so it is likely starting to wear off during the night
3. Although the "normal" reaction to opioids is sedation, many of us with RLS report that they cause us to wake up and become more alert. We often refer to that as "alerting".

It might be worthwhile to try methadone or even buprenorphine. Both have extended half lives (24+ hrs), so they are once/day meds that do not wear off. You can develop tolerance them as well, but if you have tolerance to oxy, they that probably would not carry over to methadone since it is a totally different type of opioid.

Thank you Steve, very helpful!

I tried Buprenorphine prior to oxy and I would get nauseous out of the blue, within a few minutes would vomit. That was when we decided to try oxy.

Do you think methadone would cause the similar reaction as the Buprenorphine?

Thank you, Leslie

I heard a presentation by Dr Earley who said "every opioid has different side effects that vary from person to person, that is why there are so many different products available". You will also frequently see here the statement that we are all an experiment of one. So, all you can do is try it to see. I have seen nausea as a side effect for the opiates (morphine based opioids), which includes both oxy and codeine, so maybe you would do find with methadone, maybe not.

Hi Leslie,
I am wondering if the extended-release version of oxy would work for you. I take the immediate-release oxy during the day as I have RLS 24/7 and then at night around 7 pm I take a 10mg oxy extended-release. Just a thought to give it a try. I have not noticed that the ER one keeps me awake.
Good luck,
Lissa

If the ER version keeps you awake (called alerting), you can try taking it a bit earlier in the day just so long as its half life doesn't wear off during the middle of the night. I experience alerting with methadone, so I take it at lunchtime instead of bedtime (as my doctor told me to do).

Hi Lespenney -

I too take 5 MG just before bed and I also have to take 2.5 MG in the middle of the night to address my RLS. When my symptoms start to appear, I also get the sensation in my torso and arms...it almost feels like a sour stomach in a way, which convulsions in my torso/arms...in addition to my legs! I also get a weird feeling in my head (similar to severe brain fog). I have no idea what is going on and often feel hopeless.

I am also working with the RLS Care Center team at Scripps in San Diego. They just prescribed me with Pregabalin 50 MG at bedtime. Jury is still out but I seem to be reaching a deeper sleep since I've been on it.

I am also experiencing severe bloating and think it may have to do with the Oxycodone. Have you been checked for SIBO (Small Intestine Bacteria Overgrowth). They say that this may be cause of RLS as SIBO inhibits the absorption of iron in your body. Studies say your Ferritin should be over 100. Mine hovers in the upper 40s to low 50s. I am hoping to get an iron infusion to bring my levels up.

Hello Trophyman, I've been on oxycodone for over a year and never experience any bloating. Just saying.

'Alerting', so that's why I don't like going to bed til 4:00 am. I thought I was just a night owl.

Brynmr wrote: ↑

Thu Mar 28, 2024 4:51 pm

'Alerting', so that's why I don't like going to bed til 4:00 am. I thought I was just a night owl.

I have to take methadone approximately 7-8 hours before I want to be asleep (and I can STILL fight sleep even then). I usually take it by 5 PM to have any hope of getting to sleep by 12 to 1 AM. I took it at 6 PM last night and had to force myself to get in bed at 1:30 - and didn't go to sleep until after 2 AM.

My WED/RLS doc - who sees hundreds of us - even told me to take it later. I did it just so I could show him how horrible it was. After a week he told me to do what I usually do. LOL.

ViewsAskew wrote: ↑

Thu Mar 28, 2024 6:29 pm

Brynmr wrote: ↑

Thu Mar 28, 2024 4:51 pm

'Alerting', so that's why I don't like going to bed til 4:00 am. I thought I was just a night owl.

I have to take methadone approximately 7-8 hours before I want to be asleep (and I can STILL fight sleep even then). I usually take it by 5 PM to have any hope of getting to sleep by 12 to 1 AM. I took it at 6 PM last night and had to force myself to get in bed at 1:30 - and didn't go to sleep until after 2 AM.

My WED/RLS doc - who sees hundreds of us - even told me to take it later. I did it just so I could show him how horrible it was. After a week he told me to do what I usually do. LOL.

That's terrible if you have to get up and go to work in the morning. I don't mind it because I'm retired and don't have to get up at any given time. Of course my oxy dose is low (5mg) so in 3 hours I'm sleeping. Guess I'm fortunate in that.

Oxy never worked for me if I took it more than a couple of days. My RLS would be worse. It was 5 mg

Brynmr wrote: ↑

Sat Mar 30, 2024 9:57 pm

ViewsAskew wrote: ↑

Thu Mar 28, 2024 6:29 pm

Brynmr wrote: ↑

Thu Mar 28, 2024 4:51 pm

'Alerting', so that's why I don't like going to bed til 4:00 am. I thought I was just a night owl.

I have to take methadone approximately 7-8 hours before I want to be asleep (and I can STILL fight sleep even then). I usually take it by 5 PM to have any hope of getting to sleep by 12 to 1 AM. I took it at 6 PM last night and had to force myself to get in bed at 1:30 - and didn't go to sleep until after 2 AM.

My WED/RLS doc - who sees hundreds of us - even told me to take it later. I did it just so I could show him how horrible it was. After a week he told me to do what I usually do. LOL.

That's terrible if you have to get up and go to work in the morning. I don't mind it because I'm retired and don't have to get up at any given time. Of course my oxy dose is low (5mg) so in 3 hours I'm sleeping. Guess I'm fortunate in that.

Not all of us have the alerting thing. And it does seem worse with the longer acting/half-life opioids.

I had cancer and the oncologist gave me a script for oxycontin. I did not ask for it, was not I pain and did not experience RLS at least until early evening. I had seen the oncologist before my diagnosis because he is also a Haematologist and I was trying to convince him to do an iron IV treatment. He understood but saiid it was out of his experience base. Maybe he prescribed it since he remembered about my severe RLS. He was a very smart Ivey League doctor. So I tried it a few times but immediately experienced alerting. Feels like you can stay up all night and write a thesis. I still have 25 of 30 pills left a year later. I can see why people get addicted, it is very euphoric.

Then I finally found a Concierge doctor who said he could prescribe buprenorphine at great expense only to find it is very hard on your teeth. A lifetime dose of radiation into my jaw sets me up for painful and expensive dentistry I am trying my best to avoid. An alternative external Transdermal patches are obscenely expensive on top of the doctor. Everyone taking buprenorphine orally should be aware of FDA warning on this.

I wish you the best of luck finding something that works, It sounds like doctors have a lot of leeway where you live but do your research and be careful going down the rabbit hole of medications.