Where do I go from here?

[Brynmr]

Would your doctor be willing to put you on an extended-release Oxy? It is a little bit more expensive but worth it as it would get you through the night, they only come in 10mg and higher though.

I would ask your doctor if they would be willing to put you on a nighttime Oxy ER and see if they are willing, don't bring up the mgs let them prescribe it at the lowest dosage. See if that works.

I am on 5 mgs 4 times a day, but it only lasts 3-4 hours so I was still not sleeping through the night. So my doctor asked if I was willing to try the Oxycotin ER version, which lasts about 8-10 hours. She was the one who realized it was only prescribed in 10 mgs, and she was like oh okay, and prescribed it. It works pretty well, it takes about 2 hours to kick in, but once it does it works great for me.
Lissa

Hi Lissa, I'm taking Oxycodone HCL (IR) 5mg (15mg daily) which work well when I can get enough of them. Lately even the 15mg a day isn't quite doing it. Today I got hit with symptoms in between pills. Suffered bad for almost an hour. I don't know about y'all but my symptoms are terrible. Not the bouncy leg type symptoms (those are nothing) but the ones that come after. I liken them to boiling vinegar throughout my nervous system. Nothing short of drugs will ease them. All I want is to crawl out of my skin. I need coverage from noon to 6 am the next day so your suggestion would work @ 10mg twice a day. My GP won't do it but the pain management facility I saw today (1st visit) just might. I'll seem them again April 8 so I'll mention this drug to them them. I'm glad it's working well for you. Lord knows we need more of that. Thanks for the tip.

[Brynmr]

The doctor at pain management today suggested that the increase in symptoms since the operation might be linked to the chemo pill I'm taking daily. This is the first time I've heard this one. Anyone else has any knowledge of this. I talked about the iron levels and he said he'd look into it. My second visit in 2 weeks will be with another doctor more familiar with RLS.

[Lissa496]

Hey, if your treatment has any steroids in it, I could see it making your legs worse. I was on a treatment that had steroids and it made my legs worse, as you said not the bouncy legs the creepy crawly achy want to cut them off pain. I hope you can get on the Ox ER and they don't cut down your other meds.

By the way, if you are in an area where kratom is legal you may want to look into it. That is what got me through when I was not getting enough meds and boy it helped me, it calmed my legs, and it helped me sleep at night. Just a thought!

Lissa

[Brynmr]

I had an appointment with a neurologist today. He asked me questions - particularly what RLS felt like for me. That was difficult to answer. My description of "boiling vinegar" didn't impress him, neither did wanting to crawl out of my skin. I finally ending up saying RLS just felt creepy crawly. He liked that a lot. He said patients usually describe it as bugs crawling inside the body. I thought to myself more like electric eels slithering about. (I'm retiring the boiling vinegar description and going with slithering electric eels). Anyway, maybe he was testing me to see if I was faking it LOL.

He told me he believed oxycodone was an excellent drug to treat RLS and Requip wasn't. This was an absolute pleasure to hear since the usual is oxy stigmatized and Requip thumbs up great. And Lissa, just before I was to mention oxy ER, he suggested I ask my pain management doctor about getting oxy ER to treat my symptoms (which btw he said were quite advanced). He also disapproved of iron infusion. He said the several patients he knew who tried it didn't help them at all. But he liked that I was taking 65mg of iron daily. Another thing was he himself has the disease, though not yet beyond the bouncy leg stage. All in all a good appointment.

[Lissa496]

That is wonderful! I suggest having your neurologist copy their notes and send them to your PM with this strong recommendation. I know the PM usually sends their notes back to your neuro, so I don't see why the neuro cannot send their notes to your PM!

I wonder why your neuro is not prescribing the oxy? I see a neuro who specializes in movement disorders instead of a PM. I left a PM to see my most recent neuro as the PM didn't understand what RLS was and tried to put me back on DAs, until I mentioned I augmented on the DAs.

By the way, I always describe RLS with the creepy crawly bugs, achy want to cut my legs off, and it may go away when I stand up, but not always, especially when I am in the throws of a bad RLS experience. I think that is what most doctors want to hear and expect, though I do get your boiling vinegar description and the electric eels, I get the zapping too, but most won't.

Either way good luck, Lissa

[Rustsmith]

That is wonderful news. You definitely found a keeper with that neuro and hopefully your PM will be willing to switch you to oxy ER since regular oxy is working well for you.

As for the description of the feeling, I tell people that language describes a shared experience and that only other RLS patients can understand what it feels like. About a decade ago, the Foundation requested input and created a word collage of things that people used to describe their RLS. Words like Indescribable, Hopeless, Excruciating, Annoying, Exhausting, Torture and Sleepless were the most common. Creepy-crawly made it onto the collage, but wasn't as frequently mentioned even though that is the common description in medical literature.

[Brynmr]

Yes, I liked the neurologist. He said he'd post the results of our appointment on MyChart but I haven't seen it yet. I did ask that he send the oxy suggestion to pain management which he said he would. PM appointment in 2 weeks. I also sent my neurologist's suggestions to my GP.

I asked the Neurologist if he would prescribe meds but declined saying pain management would handle that. That was disappointing. I don't trust PM to hold a similar opinion on the best way to treat RLS. Neuologist said I could contact him on MyChart if I had concerns or needed an appointment so I may hold him to that if pain management shows a weakness in prescribing oxy.

Yeah, the electric eel was a bit of artistic license. Slithery to me is very creepy while the electric adds the nerve pain thing.

[Brynmr]

That is wonderful news. You definitely found a keeper with that neuro and hopefully your PM will be willing to switch you to oxy ER since regular oxy is working well for you.

As for the description of the feeling, I tell people that language describes a shared experience and that only other RLS patients can understand what it feels like. About a decade ago, the Foundation requested input and created a word collage of things that people used to describe their RLS. Words like Indescribable, Hopeless, Excruciating, Annoying, Exhausting, Torture and Sleepless were the most common. Creepy-crawly made it onto the collage, but wasn't as frequently mentioned even though that is the common description in medical literature.

Good news! My GP did a 180 after reading my neurologist's report on my condition. He not only offered to prescribe an increased dose to 15mg daily (I agreed to this), he asked if 20mg daily wouldn't be better since I had indicated 15mg was a get by dosage (again, I agreed to this). So for now I'm on 20mg daily which means I'm comfortable without short periods of white-knuckling. He said the neurologist's report put him at ease about opioids. Also he attended a symposium recently regarding opioids. One of the key speakers' bottom line message was emphatically expressed: "Give the patients what they need!" He said I could cancel my appointment with pain management since they'd likely prescribe the same. I did. Plus, fewer co-pays.

My favorite term in the list is excruciating. Excruciatingly creepy-crawly.

[Rustsmith]

That sounds like great news. I hope that the 20mg oxy ER works well for you for a very long time.

And also good that you don't need to mess with pain management since they often don't understand conditions like RLS that are not classical pain situations where they can try other treatments to try to wean you away from opioids.

[Brynmr]

That sounds like great news. I hope that the 20mg oxy ER works well for you for a very long time.

And also good that you don't need to mess with pain management since they often don't understand conditions like RLS that are not classical pain situations where they can try other treatments to try to wean you away from opioids.

Yeah, I'm so relieved. For now I'm taking the immediate release type oxy which is working really well. And you're right about pain management. One facility I spoke to, before choosing another one, hadn't even heard about RLS.

[Lissa496]

I am so happy for you that you were able to get the meds you need and the dose! Happy you don't have to go to PM as they have much sticker rules and make your life a little harder! Good luck!