Restless Legs Syndrome (RLS) Discussion Board

My RLS has progressed pretty similar to yours. It began solely in my legs with that urge to move sensation, and now it can happen all over my body and is more like an involuntary spasm with a split second of forewarning. When I'm not treated adequately with my opioid medication the spasms are unrele...

Has anyone been to the RLS quality care center in Pittsburgh? If so I'd really appreciate any insights you might have on UPMC and Dr. Aggarwal. Im considering moving but as you all well know having a good doctor you can trust is a necessity for us.

https://n.neurology.org/content/82/21/e185 "The investigators showed that reduced leg oxygen levels were strongly associated with RLS symptom severity in untreated patients. They also showed that leg oxygen levels partially improved after dopamine medicine was restarted.3 Reduced leg oxygen levels i...

I've been tinkering around and noticed I do quite a bit better at lower elevations, and am currently tinkering with humidity levels to confirm whether that makes a difference. It seems to help my RLS severity but also just my general quality of sleep to a surprising degree. Does anyone else have exp...

There is a study being done by Dr. Ondo in Houston (I believe I may not have those exact details right) to test apomorphine for RLS patients, so it may be a potential option for us eventually but at the moment there really isn't much evidence one way or the other.

I would definitely experiment with taking both meds earlier than 9pm. An hour and a half isn't enough time for them to do their job fully. Try 8 for a few nights, then 7, then 6 and keep a quick sleep journal to more easily compare the differences. Also I dont know if that is how it was prescribed t...

https://academic.oup.com/sleep/article/45/2/zsab212/6356055 Evidence that a lot of neurologists still aren't up to date on how to use dopamine agonists. https://www.sciencedirect.com/science/article/abs/pii/S1389945722012254 More evidence of seasonal variation in RLS. Still far from set in stone, bu...

Same thing happened to me, and it was directly tied to the methadone lowering testosterone levels. Go get your blood work done and it is likely they'll be able to help you with hormone shots. Hopefully you will stop having to randomly feel like you're in a sauna for no discernible reason.

Stainless wrote: ↑

Tue Aug 23, 2022 3:25 pm

Do most RLS sufferers feel symptoms below the knee? My faulty brain signals all go into my thighs.

My understanding is that is the case. Mine used to be like that but now I'm more like you. It is in my buttocks and lower back now. Sometimes my mid back.

For me it is a distinct process of the trigger point is active, the brain creates the symptoms, and if I can disrupt that signal through the nerves the brain mostly loses interest and moves to another trigger point. Mostly if I only have a few trigger points I can disrupt them and sleep for the res...

XenMan wrote: ↑

Wed Jun 01, 2022 2:22 am

I target nerves to stop symptoms

How do you do this? With a TENS unit or massage or something?

Unfortunately it looks like there may be another thing to worry about in the ever growing crack down on our meds that only seems to accomplish further scaring doctors and depriving patients. https://www.wired.com/story/opioid-drug-addiction-algorithm-chronic-pain/ TLDR: An algorithm called NarxCare ...

Even before opiates I had complex apnea (mix of obstructive and central) but they definitely made the central issue more pronounced. I had to switch to an ASV cpap that is specialized for central sleep apnea but that seems to have resolved the issue and my AHI is below 1 every night. If you do get a...

Of all the opiates (and I tried them all) it is the one that works best for me. For some reference though from my understanding methadone typically works better for most people, and bupre was the very last one my doctor tried. I like the sublingual aspect because it uptakes quicker and as one of the...

Rustsmith, I went through the same thing with testosterone very recently likely related to methadone and Buprenorphine use. As a man in my 30s I had hot flashes for over a year and just assumed that was the cost of taking opiods, but eventually mentioned it to my GP who found my test and free test w...