SEPTEMBER 2021 - New Members

Post by **Rustsmith** » Wed Sep 01, 2021 2:39 pm

Wednesday, September 1

Welcome to

clarajane53, whose RLS is continuing to get worse. Her legs ache a lot more, and keep her up a lot at night. She is currently on Levodopa and Carbodopa, but that does not help the aching.

Levodopa/Carbodopa is not recommended for daily treatment of RLS because it will very quickly lead to augmentation. We can suggest treatments, but if your doctor is open to learning, you would probably be better off sharing this publication - https://www.mayoclinicproceedings.org/a ... 0/fulltext

If you have any questions, feel free to post a message so that we can try to provide you with answers.

Post by **Rustsmith** » Fri Sep 03, 2021 12:45 am

Thursday, September 2

Welcome to

sasha, who was recently diagnosed with RLS by her neurologist. He prescribed Ropinirole, and she would like to communicate RLS, as well as the medication with others. She also has essential tremors, and their support group has been invaluable.

We would be happy to provide whatever help you need. All you need to do is post a note with your question(s).

Post by **Rustsmith** » Fri Sep 03, 2021 1:56 pm

Friday, September 3

Welcome to

Laineya, who probably 50% of by EVERY day is distressed because she can’t sit still and cannot sleep through the night without getting up between 1-3 times nightly. She has had this since her mid-30’s and she is now in her mid-60’s. She is sleep deprived, frustrated, and depressed. She only takes botanicals (Kratom and cannabis) and they help, but not enough!!

If there is any info that we can provide that will help you out, just post a note and ask.

Post by **Rustsmith** » Fri Sep 03, 2021 3:19 pm

Friday, September 3

Welcome to

Analog Annie, who has had RLS for decades and it has only in recent years worsened to the point that it is affecting her quality of life. Her doctor has offered little support so she wanted to see what other RLS sufferers may be able to add to her treatment.

You could start by providing a copy of this journal paper to your doctor. It provides guidance to a physician on the current thinking for treating RLS. And if you have any questions you would like to ask, just post a message and we will try to answer them.

https://www.sciencedirect.com/science/a ... 9620314890

Post by **Rustsmith** » Fri Sep 03, 2021 9:28 pm

Friday, September 3

Welcome to

MickCav, whose RLS is affecting his sleep and is leaving him listless and without energy to really enjoy his days.

We can all understand the issues around loss of energy that comes from sleep deprivation. If you are willing to tell us a bit about what you are doing to manage your RLS, we may be able to offer some suggestions that will help get you more sleep.

Post by **Rustsmith** » Sat Sep 04, 2021 3:09 pm

Saturday, September 4

Welcome to

gchamp, who has suffered from RLS for over 40 years. gchamp has taken so many, so called meds for RLS. At 72 years old, gchamp needs some support.

We would be happy to provide whatever support we can. Just post a note and tell us what we can provide.

Post by **Rustsmith** » Sun Sep 05, 2021 2:19 pm

Sunday, September 5

Welcome to

Restless15, who has had RLS for more than 15 years.

We are glad that you found us. If you have any questions, just post a note.

Post by **Rustsmith** » Sun Sep 05, 2021 2:23 pm

Sunday, September 5

Welcome to

Ace, whose RLS issues are twitching, crawling and tingling in legs mostly when Ace is trying to sleep but can't fall alseep. Ace us not sure what to do and is going crazy with anxiety.

We would love to help you out. If you will post a note telling us what you are currently doing to try to manage your symptoms, we should be able to provide you with some suggestions that will help you get some sleep.

Post by **Rustsmith** » Mon Sep 06, 2021 2:40 pm

Monday, September 6

Welcome to

lock, whose RLS means no quality of life at all. She has had RLS for years. Medication worked for a long time but has worn off now so she gets no rest.

If you would be willing to tell us about your medication, we may be able to offer alternatives that you can discuss with your doctor so that you can get more sleep.

Post by **Rustsmith** » Mon Sep 06, 2021 3:58 pm

Monday, September 6

Welcome to

LindaFD, who has had RLS since she was 19. She is now 61. It has, at some points made life miserable due to lack of sleep and various meds with side effects.

If there are any questions that you would like to ask, just post a note. Otherwise, feel free to join any of our discussions.

Post by **Rustsmith** » Mon Sep 06, 2021 4:54 pm

Monday, September 6

Welcome to

pamelap, who would like to be able to share ideas and exchange information about treatment strategies with other RLS sufferers. She has had significant difficulty sleeping due to RLS and has also had problems with augmentation.

We would be happy to hear your ideas and have you join in any of our discussions.

Post by **Rustsmith** » Mon Sep 06, 2021 4:56 pm

Monday, September 6

Welcome to

R121james, whose symptoms are getting worse with age. R121james is taking gabapentin and trying neuromodulating therapy and hopes to connect with others for insights.

You are at the right place to connect with other RLS patients. We would live to hear about your neuromodulation experience.

Post by **Rustsmith** » Mon Sep 06, 2021 7:11 pm

Monday, September 6

Welcome to

sturner5711, who has had RLS since age 15, although did not know it had a name at the time. Sturner is being treated by a sleep doctor for both Sleep Apnea and RLS.

If you have any questions that you would like to ask, just post them. Or you are welcome to join any of our discussions.

Post by **Rustsmith** » Mon Sep 06, 2021 8:30 pm

Monday, September 6

Welcome to

liveandlaugh58, who haw had RLS since after Menapause. She has tried 4 different meds. Now she is on Klonopin. She wants to know about new treatments.

You will find the latest recommendations for treating RLS in this recent journal article. And you will notice that Klonopin is not one of the recommended treatments. It was used years ago, but has fallen out of favor due to potential side effects with long term use.
https://www.sciencedirect.com/science/a ... 9620314890

Post by **Rustsmith** » Tue Sep 07, 2021 3:07 am

Monday, September 6

Welcome to

Lindasmisery, who is currently on vacation and hasn't gotten to sleep before 3:30am because her legs won't let up. She is totally miserable!

One trick that many of us use is to soak your legs in very hot water. If you don't have a tub available, then adjusting a shower so that it hits the back of your legs also helps. If you have any questions, just let us know.