Restless Legs Syndrome (RLS) Discussion Board

Wish I had an answer for you.

What kind of stuff are you looking for? Might help us help you.

Just one thought...when we stop opioids, we can have symptoms that feel almost identical to RLS/WED. Because some of them have a long half-life, it can take several weeks to get them out of your system and have the other meds work at the lower dose.

Yawny: I missed that suggestion you made about contacting Dr. Buchfuhrer, but that's a good idea to ask him if he himself would insist on a sleep study. Thanks! Polar Bear/Betty: good insight about how having active RLS makes it so much easier to talk about the problems. With quite a collection of ...

I got Pfizer last Friday. I had worsened RLS, but I was reducing the opioid at the time - my guess is that the med reduction was the cause.

As stjohn noted, you can sleep and not be rested. I was sleeping 12-14 hours around 2000 and was exhausted. The sleep study showed the PLMS in the incredibly high range. I rarely got out of stage 2 sleep and awakened 30 or more times that I was aware of, let alone all I wasn't aware of. When I have ...

daryl1139 wrote: ↑

Mon Mar 29, 2021 9:21 pm

I was wondering if this iv iron helped with the restless legs at all?
advise,
Daryl

It helps some of us, not others. It helps me - am due for another infusion right now, actually. It reduces my need to take opioids by about 45-50 percent. That really helps.

Wow, what a rocky few days, culminating with a trip to the ER today. Before I fill you in, please let me know if I should stay where I am or post under another category. Now, here's the story. Wednesday I took my last .25 mg of pramipexole (my friend has the rest of the bottle). Also on Wednesday I...

I can imagine that getting off the methadone has been a bit troublesome!

I have not, but I would. Dr. Rye is there - he has spent a lot of time looking at the genetics of this dratted disease. He has RLS/WED! I really liked him when I met him in person at a Foundation event many years ago.

For what it's worth, my brother thought he had severe RLS/WED for years. Then he had back surgery - what he thought was RLS was not it at all! Well, part of it was, but a lot of it was not. Now he has very mild symptoms only here and there. Ann, when I read this I wondered if maybe he did have a fo...

Agreed with both of the above. That is a high dose of ropinerole given what we know today (vs 15 yrs ago when it was approved).

Thank you, that was helpful! You are very welcome! Over time, we have had a few people here who had RLS/WED and something else...or didn't have RLS/WED at all. There aren't too many things that are confused with it, but any type of neuropathy could be, as well as four or five other conditions, IIRC.

Are you augmented on the ropinerole? If so, not sure that Horizant would be OK in that situation. It just isn't strong enough to cover the excess symptoms during that time. Could also be the dose - how much are you taking?

The 1mg dosage on the Neupro patch was not effective after a couple of nights, and my doctor increased it to 2 patches for a total of 2 mg. I slept great for one night. The next two nights I got little sleep and felt disoriented especially in the afternoon. My doctor is out of the office until Tues...

It hasn't been easy. I am now off methadone. I have another few days before it is totally out of my body but I think the worst withdrawals are over. I was up all night Wednesday but I feel better today. I know it wouldn't be easy. I had to add back gabapentin but only 600 mg am and pm. I have been ...