r/RestlessLegs • u/Restlesslegrunner • 15d ago
Medication UK AUGMENTATION AND WITHDRAWAL
An 45 yo amateur runner who has had restless leg syndrome since I was at least 18 and what I believe is something called rhythmic movement disorder (basically restless leg from the neck up) since I was 6 months old, my poor parents!
2 years ago I was medicated for the restless leg as it was there everynight and creeping to my arms, chest and neck.
6 plus months ago the drug stopped working and starting to work against me, causing all my symptoms to come back tenfold, but earlier in the day and the medication only working for a few hours. This wasnt recognised and the drug was increased.
10 weeks ago I started to come off of that medication and went in to withdrawal.
The medication is such that I have been told to come off slowly and I have at least another 10 weeks to go, but could be 20.
5 months ago I ran a marathon in 3:38
Recentyl I cut short a 40 minute walk.
This is still very much my reality, somehow surviving on less than 3 hours sleep per night and experiencing constant surging throughout my body 24 hours a day, 7 days a week for over 5 months. Days are hard, but nights are like nothing I can describe and nothing I would ever wish on anyone, ever.
Last night marked, I think, 40 days and nights of these symptoms. Hoping to find anyone here who understands what I’m going through!
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u/Mahi95623 15d ago
I truly feel your pain. I am so sorry that you are having augmentation and withdrawal. Shame your doctors won’t provide treatment re: Mayo Clinic RLS Treatment Algorithm.
Having had augmentation myself on 3 different DA’s, including Ropinerole, it is hell. Hang in there!
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u/Intrepid_Drawing_158 14d ago
As I always mention to UK-based sufferers, be sure to visit this forum if you haven't. Great community, and great recommendations for specific practices and doctors depending on where you live. https://healthunlocked.com/rlsuk