Hi everyone, just wanted to share a good story. Sorry for the telegraphic style, I'm just saving everyone's time.
I'm 33, living in Canada. I guess I've had RLS my whole life, but it started affecting my sleep about 10 years ago. I'm very active (cycling everyday, rock climbing & calisthenics). No other health issue, RLS runs in the family, my father and sister have it & other family members have it on my mother side.
I tried natural remedies at first. Iron supplements, Vit. C, magnesium, B12, even ashwaganda. As a result of supplementing, my Iron/Ferritin/Transferritin is very high, so that's not the culprit. Tried different diets suggested here: gluten free, lactose free, low oxalate, keto, etc. I didn't notice any effect at all, except for cutting food entirely after 5PM and stopping alcohol which both helped.
Tried Pregabalin alone, it helped but only dimmed RLS (like moving from an average of 9-10 of discomfort/pain to a 4). I resisted being prescribed Pramipexol, then had to try it as part of "standard treatment" to get to other medications. It worked well for about 3 months. Then I started augmenting over a period of 3 months with RLS during the day and whole body RLS at night. Took me 3 months to get off it entirely (worst period of my life). Tried cannabis oil during that period, it helped somewhat. However, as a whole, my life was a mess. I couldn't concentrate, I was always tired and feeling depressed. I could work maybe at 30 or 50% of my capacity compared to 5-6 years prior.
In March 2021, I finally met a sleep specialist. I spent night at the sleep clinic, got definitive (brain activity, video and muscle spasms) proof that my RLS was through the f*&%$£g roof. Got prescribed Methadone as a result. At a low dose (5mg), with Pregabalin as support (150mg) it works wonder at controlling RLS symptoms.
However, it caused insomnia. After a few months, I went back to the sleep specialist, got a prescription for Zolpidem. It worked very well for sleeping, but side effects are terrible (depression, difficulty concentrating, joints pain).
Two months ago, I went back to the sleep specialist and got prescribed Trazodone. With these three meds: 5mg Methadone, 150mg Pregabalin and 50mg Trazodone, I sleep like a baby. I still get a peak of RLS around 10-11PM and I still have few bad nights, maybe 1-4 times a month, but since I sleep well every other day, I'm more resilient to those bad nights. I'm now able to work 40 hours per week and train regularly, two things I haven't been able to do for close to 4 years.
I just wanted to share a positive story. Awaiting a better understanding of the various mechanisms by which RLS can operate and a true treatment, I think that with the right meds for the right person (because there are various causes to RLS), it's possible to have a certain quality of life back.
If things start to fall apart, I'll update that story. Till then, no news is good news.
Cheers and best of luck to all of you!
Methadone: best dose timing?
trazodone and clomazepam
Pregabalin not working so well anymore
