MARCH 2020 - New Members

[Rustsmith]

Friday, March 13

Welcome to

motionmachine, whose RLS has been a major influence in life for the past 20 years and gets worse each year. motionmachine is fortunate to have an excellent neurologist and to be seen at a teaching hospital but at 4AM iswide awake from her legs!

Please post a note with any questions that you have, or feel free to join any of our discussions with your comments.

[Rustsmith]

Friday, March 13

Welcome to

bilbos, who has had RLS for about 20 yrs 2 or 3 nights at a time once or twice a month after going to bed. Started Mirapex .125 in 2020 and augmented after 2 weeks to severe spreading to arms, starting earlier in day, every day. Dose raised to .25. Augmented again a few years later and raised to .5. Augmented again and raised to 1 mg. Augmented again and raised to 1 mg x 3. Lucky to get 3 hours sleep with RLS only absent during 3 waking hours of day. Went to Stanford and put on 10 mg Methadone and weaned myself to o.5 mg and RLS returned. Finally able to see Dr Buchfuhrer who temporarily increased dose so I could withdraw completely (on day 3!) and is arranging iron infusion. Having no fun withdrawing but very very grateful for Dr. B.

You are indeed fortunate to have found Dr B after being on 3mg/day of Mirapex. Please post a note if you have any questions that we can help you with.

[Polar Bear]

15 March 2020

Welcome today to:

Stanho -whose rls has caused loss of sleep. It has changed his life where he can no longer travel anywhere for more than one day


This is a challenge that we all face and most of us manage to find a way to cope. Please make a post in the Just Joined Forum, telling us how you have managed so far and what medications (if any) have worked for you, and those which have not worked. We will do our best to help you.

[Rustsmith]

Friday, March 20

Welcome to

sallyjay, who is really struggling with withdrawl from a dopamine agonist she was taking for 15 years. She is not getting restless legs during the day now, but is tormented every night and can barely sleep. She has had to take early retirement and is trying to live on a benefit. She does not want to take any more prescription medications. She is also very interested to learn more about the gut connection re RLS.

The connection to SIBO is something that is still being studied at Stanford. Rumors are that the results show that it doesn't work for everyone but that some do see some benefit. Otherwise, you will find quite a bit of discussion about diets, but those are also something that you need to try for yourself to see if you are helped or not. If you post a note with a question, some of our members will surely respond.

[Rustsmith]

Friday, March 20

Welcome to

Stanleyr54, whose RLS is causing difficulty with sleep and is worsening with age.

Both of those situations are common with RLS. Please post a note telling us what you are doing to manage your symptoms and asking any questions that you have so that we can try to offer you some suggestions for improving your sleep.

[Rustsmith]

Wednesday, March 25

Welcome to

davidstowers, who has a feeling like electricity that shoots down his leg when he lays down. It's inconsistent and he doesn't see a pattern but thinks it must be RLS.

Please post a note telling us a bit more about your symptoms (and when they occur) so that we can provide our comments. You should also check out the IRLSSG diagnostic criteria to determine if you have RLS.

[Rustsmith]

Wednesday, March 25

Welcome to

miuzernaym, whose RLS is not the only problem that he has been facing, nor has it been deemed the cause of his ongoing EDS. But the EDS that he has been battling with has caused a major downward spiral in all aspects of his life.

If you will post a note telling us about the part that you believe is your RLS, perhaps we can offer some suggestions to help that part of your battle.

[Rustsmith]

Saturday, March 28

Welcome to

Sparkler60, who has a genetic disposition to RLS.

Please post a note telling us about your symptoms and asking any questions that you have.

[Rustsmith]

Sunday, March 29

Welcome to

jehifiker, whose RLS has caused hyperinsomnia, depression and dopamine agonist withdrawal syndrome.

Please post a note telling us about what you are currently taking to manage your RLS and asking any questions that you have so that we can try to help you out.

[Rustsmith]

Sunday, March 29

Welcome to

blueberry0, who started having RLS while dropping an anti depressant. She is trying to find out more info.

Anti-depressants are frequently problems when it comes to RLS. Please post a note telling us about your med so that we can offer you our comments.