Leg Movement No Longer Stops RLS

[Lissa496]

Hi all,

I’m hoping for some insight. I’ve been on 5 mg oxycodone 4x/day (9 a.m., noon, 3 p.m., 6 p.m.) plus 10 mg OxyContin ER at night for about two years. This regimen used to work well—my RLS was mild or gone entirely.

Lately, symptoms now start earlier (4–5 a.m.), so I’ve shifted my first dose earlier, which leaves me short on coverage later in the day. I’ve also found the meds seem to work better if taken every 1.5 hours instead of every 3, which tends to give me 5 hours of relief sometimes. I sometimes add kratom to get through the worst periods. I have asked my doctor for an extra dose, but she has denied my request.

What’s concerning is that movement no longer helps when symptoms break through—the only relief comes from restricting blood flow (like making my legs “fall asleep”). I try to stretch my legs, move around, but the creepy crawlys stay and don't go away.

Has anyone else experienced opioids gradually losing effectiveness and movement no longer relieving symptoms?

Thanks everyone ~ Lissa

[Rustsmith]

Although developing opioid tolerance is not common with RLS, it does happen. Sometimes just switching to a different opioid is all that is required to regain control. Others have found that they need a short drug holiday (a few days to a week) and that they regain control when they start back up.

Either way, this is something that you need to discuss with your doctor.

[Lissa496]

Thanks, Steve, I appreciate the help.

[badnights]

When you talk to your doctor, begin with an explanation of what your life is like. She probably doesn't appreciate what you're dealing with. Keep it short, but don't pull your punches. "I get about 5 hours of sleep a night. I wake up at 4 AM and have to get up and walk around. I used to be able to go back to bed and sleep after half an hour, but that doesn't work anymore - I'm still up walking around when my alarm goes. I'm starting to make mistakes at work" or whatever is true for you.

Then ask her how she can help you.

You can tell her you've heard that taking a break from the oxycodone might allow it to regain its effectiveness. You've also heard that switching to hydromorphone might help, since it tends to have a longer time of action. You've also read that many people with WED/RLS are taking methadone or buprenorphine, which are very long-acting opioids, precisely to deal with this problem of the medication wearing off too soon. Ask her if she could consider which one of those things, or some other thing, you might try.

I think Ann (viewsaskew) had problems with opioid tolerance....

Some things that came to mind as I read your post:
- have you had your iron parameters, including ferritin, checked recently?
- we should never try for complete relief from symptoms, because if we do, it seems that something happens like what's happening to you.
- it is usually necessary to get up and move around, using the leg muscles as much as possible, and when it's bad, do squats.
- (I assume you mean your symptoms now start at 4 or 5 PM not AM?) this is a terrible compromise, but when I was in your situation I tried toughing it out until bedtime, taking my first meds at a time that would have them taking effect at bedtime, so that they would last the night. While I waited, I couldn't accomplish anything and I had to stand or walk. I stood up to eat, to read, to watch TV. Waiting to take the meds like that will often backfire, though, because once the symptoms get going they're harder to get under control

[Stainless]

I find even something as low opioid as Hydrocodone quickly loses effectiveness quickly. I save it as my silver bullet a couple times a month at 1 am.

[Rustsmith]

We need to keep in mind the statement that "we are all an experiment of one" when it comes to managing our RLS. RLS symptoms can range from mild to very severe (one paper even referred to a patient whose IRLSSG score was 39/40 as malignant RLS).

When it comes to RLS medications, about the only certainty is the dopamine meds will eventually result in augmentation if they are taken daily.

As for opioids, a few people develop tolerance and need to occasionally switch opioids or take drug holidays. Personally, I have been taking 7.5mg/day of methadone for ten years and the only problem that I had was that it depressed my testosterone levels enough to cause severe depression. That was something that my doctor should have known, but I had to figure it out myself after several near suicide events (I never tried it because I suspected one of my RLS meds, but I had specific plans).

So, my point is that hearing that others share your problem is helpful, but please do not extrapolate their experience to yourself without discussing the matter with your doctor.