Restless Legs Syndrome (RLS) Discussion Board

Definitely sounds good. Excellent news.

Excellent! Who would have guessed! They must have recognized the distress you had as soon as it was removed. Good on them.

Glad to hear it is working out well so far! Please keep us updated on how it goes!
Also, sorry if you've answered this elsewhere, but did your doc want to try the stimulator specifically for RLS or is it primarily for chronic pain or some other condition? This treatment seems very promising, but it was my understanding they werent ready to trial it for solely RLS.
Thank you!

stockton2malone2 wrote: ↑

Sat Jan 16, 2021 8:20 pm

Glad to hear it is working out well so far! Please keep us updated on how it goes!
Also, sorry if you've answered this elsewhere, but did your doc want to try the stimulator specifically for RLS or is it primarily for chronic pain or some other condition? This treatment seems very promising, but it was my understanding they weren't ready to trial it for solely RLS.
Thank you!

They are considering it for chronic pain. Having RLS gone is a bonus.

I just finished the second trial for the spinal stimulator. Doctor pulled the lead today.
I talked to the rep about it regarding RLS. She said it has worked for some people. Mostly on an individual basis. She said they place it in the same area for people any leg issues, pain, my spasms, RLS.
The best thing to do would be to have a trial. It is for one week. There are restrictions for the trial and for the permanent one until it heals. No bending, no twisting, no reaching above your head or lifting more than 8 pounds.
My RLS is gone. I mostly get RLS in the evenings when watching TV when I get sleepy. I can rarely take a nap in the afternoon because of RLS.
The rep said that a rep would know what code to use so insurance would cover it.
I can hardly wait for the permanent one. I will be weaning off the methadone then.
Nevro HF10 is the one I will be getting. The web site is: HF10.com
They are in Europe too.

That is awesome. I wonder if it works for fibro? I am pretty tired of hurting all the time .

ViewsAskew wrote: ↑

Tue Jan 26, 2021 11:38 pm

That is awesome. I wonder if it works for fibro? I am pretty tired of hurting all the time .

You can contact them on the web site.
HF10.com

debbluebird wrote: ↑

Wed Jan 27, 2021 1:50 am

ViewsAskew wrote: ↑

Tue Jan 26, 2021 11:38 pm

That is awesome. I wonder if it works for fibro? I am pretty tired of hurting all the time .

You can contact them on the web site.
HF10.com

Thanks.

I was taking methadone 5 mg in the morning and 5 mg in the evening. For the last week I have been taking 5 mg in the morning and 2.5 mg in the evening. I had some insomnia the first two nights after the reduction.
Today I started 2.5 mg in the morning and 2.5 mg in the evening. I am not sure how long I will stay at this dose. I guess it will depend on how I feel. My back started aching some today. I could tell it's because the dose is lower. I have the feeling the insomnia will happen again tonight.
So far no spasms, and no RLS.

I came across another person who doesn't think it will be possible for me to stop the methadone. That kind of attitude just makes me more determined.

I am finally past the insomnia. I decided I won't decrease methadone again until March 10th. I increased my stimulator this morning due to spasms last night but they are not like they used to be. I am able to change positions and go back to sleep. They hit twice, at 3:30 and 5:15 am. I used to have to get up when they were that strong, otherwise the intensity would just increase.
I slept very well last night. It looks like it takes several nights after each decrease of methadone. I am not having any other symptoms of withdrawal. Last time I weaned off methadone I had a lot of RLS in my legs and especially in my arms. I think also with the weaning from the methadone I am feeling all of the aches and pains in my body that the methadone was covering up.

debbluebird wrote: ↑

Tue Mar 02, 2021 5:08 pm

I am finally past the insomnia. I decided I won't decrease methadone again until March 10th. I increased my stimulator this morning due to spasms last night but they are not like they used to be. I am able to change positions and go back to sleep. They hit twice, at 3:30 and 5:15 am. I used to have to get up when they were that strong, otherwise the intensity would just increase.
I slept very well last night. It looks like it takes several nights after each decrease of methadone. I am not having any other symptoms of withdrawal. Last time I weaned off methadone I had a lot of RLS in my legs and especially in my arms. I think also with the weaning from the methadone I am feeling all of the aches and pains in my body that the methadone was covering up.

Still great news. So happy for you.

I definitely feel the aches and pains the methadone is covering up when I reduce it for any reason.

I have cut back again. Last night I had some withdrawal symptoms. I am hoping tonight will be better. I am down to 2.5 mg once a day.
Over all it is better then the last time I weaned off methadone. I am not that miserable. I am starting to have a few spasms at night which I expected. I am thinking that by Monday I will completely stop taking the methadone. Then after another week I will see where I'm at. I don't want to increase the spinal stimulator until then. I need the methadone out if my body before I'll be able to tell where to have the stimulator.

That last 2.5 might be the toughest part. Hope it isn't.

I did that last reduction on March 6th to 2.5 mg. This is not an easy process. They tell me that when reducing pain meds then the stimulator can become too strong and over stimulate. I have been going through what that feels like. I have now reduced the stimulator by 2 levels, not on the same day.
There are 100's of programs. It blocked everything before so I know it will again. I am telling all of you about this because it is not an easy process yet I think it will be worth it. I wanted off the meds. They caused other problems.