Restless Legs Syndrome (RLS) Discussion Board

Welcome today to Snowflower, whose quality of life is significantly impacted by the lack of sleep caused by WED/RLS.

Snowflower, welcome to the board. You're not alone; that has to be the worst part of the disease. Are you using any medications? What do you do for relief? Feel free to start a Topic of your own and tell us about your situation, or just browse around, and if you'd like, you can comment on other people's posts or ask questions.

Sunday, April 27

Welcome to

esprague, whose spouse has RLS. So esprague is interested in learning more about how to be be a more supportive partner.

Thank you for being so supporting. You can find out many things about RLS in our files and you are welcome to post a message with any questions that you have.

Sunday, April 27

Welcome to

Garrett, who has lost any pattern of regular sleep, and his drowsiness limits all sorts of activities he would otherwise like to do. Driving a car is risky. RLS “attacks” are unbearable and he is reluctant to attend events such as a movie or performance for fear of being trapped.

If you are currently taking a dopamine agonist to manage your RLS, you may be augmenting. If so, you need to change treatments as quickly as possible. If not, then you need to discuss your symptoms with your doctor and stress how much your RLS is destroying your quality of life.

If you have questions, feel free to post a message so that we can try to provide more help.

Sunday, April 27

Welcome to

swnath, who has had RLS for at least 25 years and has been through all the regular medications with only temporary relief. swnath is looking for permanent relief.

Unfortunately, the closest thing to permanent relief requires the use of a low dose opioid and convincing doctors to provide this can be difficult. Try sharing this document with your doctor to see if you can convince him/her to help you find relief and return your quality of life. https://www.mayoclinicproceedings.org/a ... X/fulltext

Today we welcome audioman, who has had WED/RLS for many years. Audioman was diagnosed in 2017 and is now experiencing augmentation from pramipexole, with the resulting morning and afternoon symptoms and the lack of effectiveness of the medication. Audioman is looking for help/info.

There are a lot of posts about augmentation in the Augmentation, Prescription, and General forums. Most people who come here have had their disease augmented by the medications that were supposed to help them.

The RLS Foundation has published a number of useful brochures and pamphlets on augmentation - you need to pay a small member fee to get access to them. https://www.rls.org/Member-publications

The sad thing about augmentation is that the only way out is over a hump of worsened symptoms. In other words, the augmentation consists of worsened symptoms, the only way to stop the augmentation is to stop the medication that causes it, but the symptoms get even worse during the withdrawal period.

This period may feel like it's lasting forever, and many people give up after a day or two, but it does not last forever, and everyone can see light at the end of the tunnel by day 5; usually by day 3. If you're lucky/determined, your doctor can prescribe a potent opioid to help get you through the pramipexole withdrawal. How you are treated after that will depend on your body. Many of us need to stay on an opioid because nothing else can touch the WED/RLS. But some people can get away with using only a gabapentinoid. And many are helped by iron infusions.

In my signature is a link to a post that lists the current medical papers dealing with WED/RLS treatment. You might want to try reading some of them. There is also a presentation that Steve and I did on how to approach your doctor. You can see it at viewtopic.php?p=111523#p111523