Search found 2401 matches

by Rustsmith
Sun Jun 24, 2018 2:39 am
Forum: General Topics: RLS/WED
Topic: Next Foundation Webinar - Opioid Advocacy
Replies: 20
Views: 1340

Re: Next Foundation Webinar - Opioid Advocacy

In addition to writing the letter, Peter Herzog suggests that you make a appointment to visit the office of your three congressional representatives. He has a handout to use during the meeting as well as instructions on who to ask to see, what to ask for and how to follow up. I did this and found it...
by Rustsmith
Sun Jun 24, 2018 1:01 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Potassium Citrate
Replies: 42
Views: 3511

Re: Potassium Citrate

Bronwen, potassium citrate tends to pick up water from the air. So, unless you get a specially dehydrated form, potassium citrate is about 12% potassium by weight. This means that if you have 100 grams of potassium citrate, it contains about 12 grams of potassium. The rest is either the citrate or t...
by Rustsmith
Sat Jun 23, 2018 10:53 pm
Forum: Just Joined?
Topic: JUNE 2018 - NEW MEMBERS
Replies: 39
Views: 649

Welcome to jcsherwin

Saturday, June 23 Welcome to jcsherwin, who after going through 2 episodes of 4 nights of sleeplessness and wondering if she would lose her mind decided to look at the internet. She found RLS.org and through them a contact for a support group. Through the support group contact, the RLS website and t...
by Rustsmith
Sat Jun 23, 2018 8:26 pm
Forum: Just Joined?
Topic: JUNE 2018 - NEW MEMBERS
Replies: 39
Views: 649

Welcome to nancobb22

Saturday, June 23 Welcome to nancobb22, who has lived and coped with RLS from the time she was in her early 20's to her present age of 80. She is constantly striving to improve and understand this condition that worsens with age. Fortunately some medications and life style ideas have come with the p...
by Rustsmith
Sat Jun 23, 2018 8:23 pm
Forum: Just Joined?
Topic: JUNE 2018 - NEW MEMBERS
Replies: 39
Views: 649

Welcome to Bridgercan

Saturday, June 23 Welcome to Bridgercan, for whom because of its severity, RLS has become an unchosen full-time vocation with large parts of the day and night spent managing symptoms. Bridgercan's symptoms in the last two months went from well-managed on pramixepole to completely unmanaged, resultin...
by Rustsmith
Thu Jun 21, 2018 11:55 pm
Forum: Just Joined?
Topic: JUNE 2018 - NEW MEMBERS
Replies: 39
Views: 649

Welcome to Janet Sinsel

Thursday, June 21 Welcome to Janet Sinsel, who has had RLS for 42 years and treatment with Vicodin has been the most successful. Both Requip and Mirapex have made her ill. Her doctor is having to stop prescribing opiates, and she doesn't think he is very knowledgeable about RLS. So, she wants inform...
by Rustsmith
Thu Jun 21, 2018 9:53 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: CBD oil
Replies: 12
Views: 548

Re: CBD oil

During the Foundation webinar yesterday, Dr Bainbridge said that it appears that you need a little bit of THC for CBD to provide the optimal benefits. But she also pointed out that there is VERY little research right now and that everything tends to be anecdotal. If she is correct, that could explai...
by Rustsmith
Thu Jun 21, 2018 1:05 pm
Forum: Just Joined?
Topic: JUNE 2018 - NEW MEMBERS
Replies: 39
Views: 649

Welcome to David Markle

Thursday, June 21 Welcome to David Markle, whose RLS was treated successfully for 10 years with Mirapex. Then came augmentation with severe symptoms leading to severe sleep deprivation. Please post a note telling us what you are currently doing to treat your RLS and asking any questions that you have.
by Rustsmith
Thu Jun 21, 2018 2:28 am
Forum: Prescription Medications
Topic: What is Next
Replies: 1
Views: 42

Re: What is Next

What dose have you been taking and do you know your ferritin number? Usually when Mirapex stops working, it is due to augmentation. That is where a dopamine agonist stops helping and starts making your RLS worse. This is a condition that is specific to RLS. When this happens, you need to get off of ...
by Rustsmith
Wed Jun 20, 2018 8:11 pm
Forum: Just Joined?
Topic: JUNE 2018 - NEW MEMBERS
Replies: 39
Views: 649

Welcome to Loonlady

Wednesday, June 20 Welcome to Loonlady, who has had Rls for several years & it is getting much worse & harder to manage, so she needs correct & current drug management. Please post a note telling us about your current medications so that we can offer you some specific suggestions to disc...
by Rustsmith
Tue Jun 19, 2018 6:26 pm
Forum: Just Joined?
Topic: JUNE 2018 - NEW MEMBERS
Replies: 39
Views: 649

Welcome to Billj

Tuesday, June 19

Welcome to

Billj, who suffers from RLS every evening and hasn’t slept more than 5 hours a night for the last three months.

Please post a note telling us what you are currently doing to treat your RLS so that we can offer some suggestions to discuss with your doctor.
by Rustsmith
Tue Jun 19, 2018 12:15 pm
Forum: Just Joined?
Topic: JUNE 2018 - NEW MEMBERS
Replies: 39
Views: 649

Welcome to Alladin Sane

Tuesday, June 19

Welcome to

Alladin Sane, who is a long time sufferer of RLS who is wanting to know more.

Please post a note telling us about your symptoms, what you are currently doing to manage and asking any questions that you have so that we can add to what you know about RLS.
by Rustsmith
Tue Jun 19, 2018 3:51 am
Forum: Just Joined?
Topic: Hello from Schräg
Replies: 5
Views: 131

Re: Hello from Schräg

Your ferritin level needs to be over 75 and preferably over 100, especially while you were on Neupro because low ferritin has been correlated with reduced time until you augment. But with that said, some people have problems increasing their ferritin levels with oral iron, like your Slow Fe. Even wh...
by Rustsmith
Tue Jun 19, 2018 3:46 am
Forum: Just Joined?
Topic: JUNE 2018 - NEW MEMBERS
Replies: 39
Views: 649

Welcome to WalkingDead

Monday, June 18

Welcome to

WalkingDead, who has been afflicted with RLS for almost 30 years.

Please post a note telling us a bit about your symptoms, about how you manage them and asking any questions where we might be able to offer some suggestions for improvements.
by Rustsmith
Mon Jun 18, 2018 7:33 pm
Forum: General Topics: RLS/WED
Topic: Riding the Big One (RLS 24/7, Hanging Ten)
Replies: 708
Views: 42568

Re: Riding the Big One (RLS 24/7, Hanging Ten)

EeFall, since you have been a suboxone research experiment of one for all these years, maybe it is time to talk with your doctor to see about trying dipyridamole. Judging from the experience of others on the board who have tried it, you probably couldn't get completely off of suboxone, but if the di...

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