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APRIL 2021 - New Members

Posted: Thu Apr 01, 2021 3:37 pm
by Rustsmith
Thursday, April 1

Welcome to

bpiper52, who is almost 70 and his restless leg symptoms are getting worse. He has had these symptoms for as long as he can remember.

If there is anything that we can do to help with your RLS, feel free to post a note and we will do what we can.

Welcome to SherrieLynn

Posted: Thu Apr 01, 2021 3:57 pm
by Rustsmith
Thursday, April 1

Welcome to

SherrieLynn, who has had RLS since she was a teen. Now that she is 57, she finds that the RLS has gotten worse and the treatments available are not really helpful. She is hoping someone out there has found either a new treatment or a holistic treatment that does help.

The experience of our members is that there is always something else to try but that often the doctors that are not RLS experts are not willing to offer them. If you are willing to post a note that summarizes the treatments that you have tried, we can probably suggest some other options.

Welcome to Philip

Posted: Fri Apr 02, 2021 1:20 pm
by Rustsmith
Friday, April 2

Welcome to

Philip, who recently was in the hospital. They did not give him his prescription, then gave excuses as to they needed clearance from DR. yet he had prescription at Walgreens. He was in HELL. There his to be an awareness some how to let DR & nurses understand how bad symptoms can get. A few years ago, God saved him from one of the worst car accidents one could be in, after being hit by a drunk driver, actually drinking when hit him. He has wondered why. If he can help in some small way, he would be happy to. Maybe this is why he was saved. He is 71 and is in the advanced stages. Why couldn't Walgreens use their prescription listing to create a bulletin for Patients with RLS to give NOTICE just like allergies. His symptoms are so bad Doctors think he has seizures. Hw didn't get his medication for over 4 hours and It took threats to finally get them.

I wish that I could say that your hospital experience was unusual, but unfortunately it was not. The knowledge of RLS is the medical community is sorely lacking and frequently they also have no idea of the torture that untreated RLS can be. Please feel free to join any of our discussions or you can simply post a note to start a new topic.

Welcome to Lespenney

Posted: Wed Apr 07, 2021 3:20 am
by Rustsmith
Tuesday, April 6

Welcome to

lespenney, who has been living with RLS for two years. Les lives in Canada and help is hard to find. This condition has affected quality of life such that Les sometimes feels like he is losing his mind. It is torture.

We would all agree with your comment on torture. We have several members in Canada, including one of our moderators. If you would like suggestions for finding help or for improving your treatment(s), just post a note and we will do what we can.

Welcome to tomj83969

Posted: Wed Apr 07, 2021 3:32 pm
by Rustsmith
Wednesday, April 7

Welcome to

tomj83969, who has been dealing with RLS for 18 years. He has progressed from 1 mg of Ropinirole daily in 2003 to at present 3 1/2 mg per day. In a word, he is miserable. He is looking for help, advice, and support.

If you are having problems and are at 3.5mg of ropinerone, then there is a good chance that you are experiencing augmentation and need to get off of the ropinerole and move to a non-dopamine type med. Stopping ropinerole is very difficult unless your doctor will prescribe a short course of an opioid to help cover the withdrawal symptoms ( as in no sleep for a week). We would be happy to walk you through the process. All you need to do is to post a note asking for help and also any questions that you have.

Welcome to EricP

Posted: Wed Apr 07, 2021 6:44 pm
by Rustsmith
Wednesday, April 7

Welcome to

EricP, who has had RLS for most of his life, didn’t know what it was until he mentioned something to his dad and he said that Eric's grandma had it really bad.

We would be happy to help you better understand your RLS. If you have any questions, just post a note and we will do our best to answer them.

Welcome to ahankins737

Posted: Wed Apr 07, 2021 9:59 pm
by Rustsmith
Wednesday, April 7

Welcome to

ahankins737, who has been struggling with RLS for many years and is trying to learn what her triggers are and how she can treat it without medication. It has definitely affected her sleep and in turn she is concerned about how menopause will go, which is right around the corner.

Triggers are something that vary considerably from person to person and many of us have no idea whether we have them or not. But you should be able to get an idea of some that people have identified from our files. We can also help you with non-prescription treatments for RLS even though most of us have RLS that is severe enough that we are forced to use medication to avoid going crazy.

Welcome to Roseygirl

Posted: Thu Apr 08, 2021 1:29 am
by Rustsmith
Wednesday, April 7

Welcome to

Roseygirl, who is miserable with RLS and it’s getting worse. She is looking for help.

We would love to be able to help you out. All you need to do is post a note telling us what sort of help we can provide and/or asking any questions that you have.

Welcome to whough

Posted: Fri Apr 09, 2021 9:01 pm
by Rustsmith
Friday, April 9

Welcome to

whough, who has suffered with RLS for 40 years. 35 years ago, whough tried to enter a NIH study in Bethesda but was disqualified due to low iron. whough is now taking Ropinirole, 3 or 4 years, started at .25 milligrams, now taking .5. Lot of days that has no effect or wears off in 3 or 4 hours. whough's sleep is terrible and getting worse. whough started taking Eloquis 1 month ago and is not sure that isn't interfering. RLS has made evenings and nights miserable.

We are glad that you found us but sorry that you needed to. If you have any questions you would like to ask, just post a note and we will do our best.

Welcome to Leighla13

Posted: Fri Apr 09, 2021 10:15 pm
by Rustsmith
Friday, April 9

Welcome to

Leighla13, who has had RLS on and off for 45 years. She is on medication now, but it is not working as well anymore and she is worried about augmentation. The loss of sleep is the worst part.

If your medication isn't working as well, augmentation is a possibility. If you would like our comments, just post a note telling us a bit more about your situation.

Welcome to GMZLYoung44

Posted: Sat Apr 10, 2021 12:14 am
by Rustsmith
Friday, April 9

Welcome to

GMLZYoung44, who is miserable with RLS. Young has to deal with it all day at work, then at home too until it becomes so intolerable and that Young has to go lay down to try and stretch the legs.

Are you doing anything other than stretching to manage your RLS? Do you have any questions? If so, then post a note and we will try to provide the answers.

Welcome to LeanneRW

Posted: Sat Apr 10, 2021 2:42 am
by Rustsmith
Friday, April 9

Welcome to

LeanneRW, whose RLS is getting worse and she is about at wits end! She could use relief and talking to people who can relate and understand.

We would be happy to help with some suggestions, answers to questions or simply understanding. If you will post a note telling us what you are currently doing to manage your RLS, that will get us started.

Welcome to jess

Posted: Sun Apr 11, 2021 12:22 am
by Rustsmith
Saturday, April 10

Welcome to

jess, who has had RLS since age 20 yrs. jess's symptoms occur only occasionally so the disease has not had a great impact on my life. jess is very interested in current research because you never know if this disease will get worse with age.

You will find quite a bit of information about research in our General Topics forum. If you have any questions, just post a note and ask.

Welcome to Janis

Posted: Sun Apr 11, 2021 3:05 am
by Rustsmith
Saturday, April 10

Welcome to

Janis, whose RLS has affected her ability to sleep. It has caused considerable stress in her relationships and her quality of life.

We would love to be able to help you regain control of your life. If you are willing to post a message telling us what you are currently doing to manage your RLS, we should be able to offer some suggestions for improving your control, your sleep and your quality of life.

Welcome to kgmoore2187

Posted: Mon Apr 12, 2021 1:57 am
by Rustsmith
Sunday, April 11

Welcome to

kgmoore2187, who developed severe pricking sensations and leg jerks about 4 years ago. kgmoore experienced this all day long but it is worse at night when at rest. kgmoore is young, 33, so getting doctors to believe the severity of the symptoms and impact on life was hard. Before kgmoore found a neurologist to help, kgmoore almost quit graduate school because due to only sleeping 2 hrs a night. kgmoore's symptoms are moderately under control with gabapentin, but there are rough patches.

It's great that you found a doctor who would listen and who cared. It is also very good that you started with gabapentin instead of one of the dopamine agonists that many doctors start their patients out on. As for the rough patches, that is probably an indication that you are at the right dose. The proper goad is to shoot for 95% control because anything more only speeds to time until you need to switch to something else.