Restless Legs Syndrome (RLS) Discussion Board

Hopefully others on oxycodone will respond. According to the book "Clinical Management of Restless Legs Syndrome", the usual dose range for oxycodone is 2.5 to 10 mg taken every 4 to 8 hrs.

I just tried Oxycodone to see what would happen. Have been using methadone for a long time. It has not been effective for me at the prescribed dose - which was 10 mg every 6 hours. At most I would sleep 45 minutes to an hour, then up for a few and then maybe another 30 minutes. But, I take a relatively high dose of methadone...so not surprised it didn't work for me.

I am back to methadone - which works exceptionally well in many ways.

Ann, That helps me to know that about your experience on oxycodone. The sleeping for 45 minutes to an hour and up for a few is what I have been doing since the dosage change. I ended up taking 5 mg at 10:00 than having to take another 1/2 at 1:30 am this morning and just now got up at 4:00 to take another pill. So, I will let my PA know what is happening. I think the 7.5mg was the magic number. Thanks.

2BassetMom wrote:Ann, That helps me to know that about your experience on oxycodone. The sleeping for 45 minutes to an hour and up for a few is what I have been doing since the dosage change. I ended up taking 5 mg at 10:00 than having to take another 1/2 at 1:30 am this morning and just now got up at 4:00 to take another pill. So, I will let my PA know what is happening. I think the 7.5mg was the magic number. Thanks.

So hard to find things that work, isn't it?

I am currently on 5 mg of oxycodone for my rls/hip & back pain. I find that this strength, down from 7.25/3.25 is not very effective. I only get about 2-3 hours of relief and I am waking up with restless legs after 1 1/2 hours sleep.

I also found 5 mg and 10 mg oxy to be ineffective. 10 mg would calm it for a bit, but not enough to sleep. For one thing, the dose is too low. For another, we pretty much need the extended-release versions to get any kind of quality sleep.

I used OxyContin (extended release version of oxycodone). I’m not sure whether the strength per mg is the same. 5mg did not come close to dealing with symptoms. I found it needed 30mg daily - all in the evening - to quiet symptoms effectively. Unfortunately at this dose, one tends to experience withdrawals by about mid morning the following day. I also experienced problems with becoming very alert after taking the opioids so that I had great difficulty sleeping though it was blissful not having the jerkies.

It's that time again to do the refill song and dance. I messaged my PA to let her know that I was low and would need a refill. Shared some info with her about triggers for my RLS. Also mentioned that 5mg oxycodone was not taking care of my symptoms long enough to get some sleep. I asked if we could revisit the 7.5mg dose. This was on Wednesday and they ask for 48 hours notification. I had forgotten that they are closed on Fridays so I took my last pill this evening and now will not have any until Tuesday. I am unhappy that I didn't even get a response from her. This is getting so old trying to get refills. Today was not a good day and I expect this weekend to be worse.

So sorry you are going through this. The holidays always make it so difficult - adding it to someone who doesn't seem to understand and isn't responsive...I can only imagine how you feel.

Hope you have some way to settle the symptoms.

I found out from another patient of this pain management clinic that they were closed the entire week between Christmas and New Years. So my message about my needing a refill hasn't even been read. This weekend has been pretty rough with almost constant RLS symptoms in my legs, arms, shoulders, and hands. Very little sleep. I have nothing left of my prescription and must wait until Tuesday morning to contact the PA . I'm trying to keep my spirits up but it is hard.

This is dreadful, 2Basset! I don't suppose you can get a rush order of kratom shipped to you?

It's time to start working on your pain doc, if you haven't already, with targeted information about management of refractory WED/RLS. (I hope you get to see the same doctor every time?) The Clinical Management book Steve mentioned is good (be sure you get the 2nd edition, though!), and so is the Medical Bulletin published by the Foundation for healthcare providers. Either one would be a worthwhile investment if you gave it to your pain doctor. Be sure to read it yourself first, and highlight or mark the parts that are relevant to you, that you want the doctor to be aware of.

When you present it/them to your doctor, be sure that you understand that the doctor has the background necessary to evaluate the validity of medical information and to choose a course of treatment. He/she has access to information and knowledge that you don't have. The relationship must be mutually respectful - the doctor ideally will realize that you can point him to information that he might need. With this in mind, you can tell your doctor that you were researching the disease and found some information, and ask if he would mind taking a look at it and giving you his opinion.

Or - is there a Quality Care Center anywhere near you? Then you wouldn't have to go through the tedious process of educating your doctor...

You gave me good direction as to approaching my pain doctor. I have all the publications you mentioned and I will highlight what applies to me. I will look up a quality care center although the last time I looked there wasn't one near. But it would be worth traveling to to get the best care. I really appreciated your response. I am hanging in there with a vibrating pad, heat, and tlc from my husband. I will be calling in to the clinic first thing in the morning, I'll post what I find out.

Give your hubby a big hug. It's so hard for others to understand the agony, kudos to him for the TLC.

I Would definitely travel to get good care. Luckily I don't have to, but if I did, I would deplete my savings to get good care. It would change the quality of my life, so it would be worth it.

I hope you can build a partnership with your pain doctor that will develop into an effective treatment and a better life. Here's to your 2018, may it be much, much better!

Thanks, I'll give my husband a big hug! There is a quality care center in San Diego where my son and his family live!! I just got off of the phone with him and told him he may be seeing me in the near future. I will see what my pain doctors reaction is and go from there. I live in Northern Idaho but there are reasonable flights to San Diego. There is an added benefit to going to SD for care, I get to see my darling granddaughters:)

I forgot to mention that I probably would not try Kratom at this point as I have A-Fib and need to be careful about certain herbal remedies. I noticed that one of the side effects of Kratom is increased heart rate. But I appreciated the suggestion.

May I ask how you got diagnosed with A-fib and what, if any, symptoms you notice from it? My dad had it, but it wasn't discovered until after his second stroke. The ER doctor left him hooked up to the heart monitors for 6 days, suspecting AFib, but it took 6 days before an event occurred to confirm it.

If the doctors after his first stroke had done that, he might not have died when he did. But they put him on statins even though his cholesterol and blood pressure were fine. I insisted on a sleep study which showed he had severe OSA, so he got a CPAP, but he was still exhausted all the time and had episodes of apparent drunkenness even though he wasn't drinking, I don't know how else to describe it, that in retrospect were probably caused by episodes of irregular heartbeat leading to oxygen deprivation.

It's hereditary and I've felt weird things in my heart all my life but doesn't everyone ... or do they? So anyway I worry that I might have it and die needlessly before my time. But how to find out? if it's as episodic as it was with my dad, it won't be detected because they will never send me home with a Holter monitor for more than one day.