MAY 2022 - New Members

[Rustsmith]

Sunday, May 1

Welcome to

DWM, who is 71 and has had RLS for 20+ years. DWN has been on several different meds over the years. RLS affects DWM's ability to get a good night's sleep and the meds produce undesirable side effects.

The list of RLS meds is quite long, so there is probably something that will work for you without producing unacceptable side effects. If you are willing to post a note telling us what you have tried, we can probably suggest something for you to discuss with your doctor.

[Rustsmith]

Sunday, May 1

Welcome to

lfm46rx1, who has been suffering with RLS for a long time. As lfm has aged, it has gotten worse. lfm is hoping to find some new ideas. And lfm is a pharmacist.

There are a number of different treatments available for RLS. If you are willing to tell us what you have tried, that will give us a starting point to suggest something that might be new to you.

[Rustsmith]

Tuesday, May 3

Welcome to

DHammers, who needs all of the info on RLS, which constantly threatens to show its ugly head, thus keeping DHammers in constant dread!

We would be happy to provide whatever info on RLS that you need. If you are willing to tell us what you are currently doing to manage your RLS, we can probably suggest a treatment that you can discuss with your doctor and thereby control your symptoms.

[Rustsmith]

Wednesday, May 4

Welcome to

pgh, who is miserable when his RLS kicks in.

If you have any questions or would like some suggestions for medications that can provide better control of your symptoms, just post a note and let us know what we can do to help you out.

[Rustsmith]

Thursday, May 5

Welcome to

SShimeall, whose life has become centered around RLS and SShimeall wants that life back. SShimeall cannot get proper treatment for severe symptoms, sleep is nonexistent at night. So, SShimeall is looking for treatment that works and people who understand what RLS is about.

We all understand what your life is like right now. We can offer suggestions on how to find a doctor who understands how to treat RLS or we can suggest information that you can share with your doctor if (s)he might be willing to learn from a patient. All that you need to do is to post a note with your preferences so that we can start the discussion of what you can to to proceed.

[Rustsmith]

Thursday, May 5

Welcome to

Lamar, whose RLS affects his sleep nearly every night.

We can probably offer some suggestions that will help you get better sleep. If you will post a note telling us what you are currently doing to manage your RLS, that will give us an idea of what to suggest.

[Polar Bear]

Friday 6 May 2022

Welcome to

Destro who has Restless legs every night. Sleep interrupted. Came off medication prescribed as augmenting. Looking for other’s experiences that may help with symptoms such as diet and vitamins

If you look on the Non Prescription Forum you will find useful information. If you make a post and tell us what you are using to control your symptoms including any supplements you are taking at present it gives us a starting point. Some sufferers find that a change in diet will help and that there are certain food triggers for RLS.

[Polar Bear]

Sunday 8th May 2022

Welcome today to:

northerngirl who has had a Lifelong struggle with RLS progressed to sever these past 5 years
Runs in the family.

We would like to be able to help you. There is a lot of information in the Just Joined Forum and we hope this will give you useful pointers. If you feel ready please do join in with a relevant thread or start your own thread. If you tell us how you have been managing your rls, are you taking any medications, what has or hasn't worked.... this will give us a starting point to help guide you to better control of your symptoms.

[Polar Bear]

Monday 9th May 2022

Welcome today to:

godfrey617 says that this website has been lifesaving. godfrey617 has had RLS for 10 years and it was under control for the first 8 or 9. Then suffered thru augmentation for the last 1-2 years. The symptoms were more severe, started earlier in the day and had spread to the shoulders. godfrey617 cried to sleep most nights. The neurologist did not diagnose augmentation, godfrey did by studying everything that could find on the foundation website. Quitting the Mirapex (1 mg) and Gabapentin (900mg) was the hardest thing ever done. It was a very dark couple of weeks/months but godfrey finally made it thru to the other side and now wants to tell the story to help others!

You have found as most of us do that not all doctors can treat RLS in a positive way. Self education is so important and its' great that you got yourself off the Mirapex. Just to note that Gabapentin does not cause augmentation. Please do start a thread in our Just Joined forum and we look forward to hearing your story.

[Polar Bear]

Monday 9th May 2022

Welcome today to:

Yarn1986 who has had rls for many years and would like to read how others cope. Affects me at night usually the same time.

You will find lots of relevant information and please do ask any question that you may have. We are here to help as much as we can.

[Polar Bear]

Tuesday 10th May 2022

Welcome today to:

KonaKid who has suffered from "busy legs" for his/her whole life. When KonaKid wanted to sign up for the long term opioid study and one of the first questions they asked was, "Have you ever considered taking your life" KonaKid knew finally that there were others who understood.

We are glad that you have found us (but sorry that you have need of us) and we will be glad to do what we can to help. When you are ready, if you start a thread telling us of your RLS journey and what you have tried to find relief, whether successful or not, we will be able to make suggestions to go from there.

[Polar Bear]

Thursday 11 May 2022

Welcome today to:

Nanaboo01 who has RLS on long flights and when not getting in a lot of exercise.

Long flights and car journeys are a problem to most of us. If you have any questions please ask by joining a relevant thread or starting your own thread. We all have ways of making things easier for ourselves.

[Rustsmith]

Thursday, May 12

Welcome to

NeuroJoe, who has been suffering with moderate RLS for years. Coincidentally, he is a PhD Neuroscientist who has trained with Jim Connor at Pennsylvania State Univ-Hershey.

Welecome to the board. If you have any questions that we could help with, just post a note. Otherwise, feel free to join any of our existing discussion threads.

[Rustsmith]

Saturday, May 14

Welcome to

Jefferykincaid, whose RLS started as a mild distraction and is now becoming a significant part of his life. It is hard to find care. He has joined the board to find answers to help get some relief.

We would love to answer any questions that you have. All that you need to do is post a note with any questions that you have.

[Rustsmith]

Sunday, May 15

Welcome to

Joneslangmeads, who has had poor sleep since menopause but even worse with RLS, which wakes her several times a night. Leg stretches sometimes work but she has to walk around on other occasions. Sitting in a chair can help. She is so tired during the day.

There are steps that your doctor can take to treat your RLS. The first step should be a test of your iron levels, which probably need some sort of supplement. Your doctor should check your ferritin level at this time. As a bit of warning, many doctors are not familiar with the proper steps for treating RLS and immediately prescribe a dopamine agonist med (usually either pramipexole(Mirapex) or rotigatine(Requip)). This should be step 3 in treatment. To educate yourself, take a look through this document before talking to your doctor and maybe even share it with him/her. https://www.mayoclinicproceedings.org/a ... 0/fulltext

And feel free to post a note with any questions that you have. We are here to help you out.