NEW MEMBERS - October 2021

[Rustsmith]

Wednesday, October 13

Welcome to

suzannemm, whose boyfriend suffers the effects of RLS and gets very little sleep.

We would love to be able to offer some suggestions that will help him get more sleep. All that we need to know is a bit about what he is currently doing to manage his RLS.

[Rustsmith]

Thursday, October 14

Welcome to

dohlmann, who has had RLS for over 25 years. dohlmann has a severe case and quit working 7yrs ago due to being mentally and physically exhausted. dohlmann has tried numerous meds to help deal with this syndrome.

Our experience has been that there is usually something else to try to treat severe RLS. If you would like our suggestions, just post a note that gives us an idea of what you have tried and why they didn't work out.

[Rustsmith]

Thursday, October 14

Welcome to

FrankandBeans6869, who has struggled with the effects for more than 10 years, as has F&B's brother. F&B is looking to share information regarding treatment and support and is interested in learning how people handle the use of ropinerol and its side effects.

We look forward to sharing with you and specifically experience with ropinerole. All you need to do is post a note to start the conversation rolling.

[Rustsmith]

Friday, October 15

Welcome to

ME2TOO, who is exhausted during the day because of lack of sleep. The medications prescribed by ME2TOO'S doctor are upsetting, so ME2TOO is frantic to find some help.

We can explain all of the treatment options that are available to you and your doctor. All we need is for you to post a note telling us what you have tried so that we know which meds to skip.

[Rustsmith]

Sunday, October 17

Welcome to

FakeBeans, who wants to discuss the problems experienced due to RLS with people who can understand.

We would be happy to discuss any issues that you would like. All that you need to do is post a note with the topic that you want to discuss.

[Polar Bear]

Tuesday 19th October 2021

Welcome today to:

Blu - who has been affected by RLS for about 30 years and is now on a third pharmaceutical. So far, so good. The first made Blue sleepy during the day, especially when driving. Very dangerous. The second gave Blu dizzy spells. Blue is thrilled to get a good night's sleep.

We would be delighted to hear what did not work for you and what third pharmaceutical is not working for you.... so far. Please feel free to start a thread and tell us your story.

[Rustsmith]

Tuesday, October 19

Welcome to

Carolynpf, whose RLS has gotten increasingly annoying in the last few years, affecting her sleep as well as her relaxation time. She is seeking relief and info from this group,

We would be happy to provide whatever help we can. All that we need if for you to post a note that gives us an idea of what you are currently doing so that we will have an idea of where to start with our suggestions.

[Rustsmith]

Wednesday, October 20

Welcome to

Joe A, who has refractory RLS and still working with a doctor on how to treat this.

Many of us have refractory RLS, so we are familiar with the treatment options. If you would like some suggestions, just post a note to tell us what you have tried.

[Rustsmith]

Wednesday, October 20

Welcome to

lssssss333333, who has reduced symptoms by 90% and would like to share in case it can help someone else.

All that you need to do to share is to post a note that tells us what you did to reduce your symptoms.

[Rustsmith]

Wednesday, October 20

Welcome to

Charli4149, who is 30 years old and has had RLS on and off for a few years. However, she recently has had it every day and barely gets any sleep at night. She is otherwise healthy and active. Since her RLS has worsened she has felt quite depressed and sleep deprived and finds herself unable or not wanting to do normal day to day things. She feels like she can’t relax anymore.

We have all been there. If you will post a note to tell us what you have been doing to manage your symptoms and what you do to try to get some sleep, we can probably offer you some suggestions.

[Rustsmith]

Friday, October 22

Welcome to

Hunkyhubby, who has had RLS and has been under a doctor’s care since 2009. Hunky is sensitive to medications so it’s been a struggle to get the combination just right.

Hunky just turned 65 and the Neupro monthly cost soared to over $380 with insurance! It was working (with Zonosamide), but Hunky had to move back to ropinirole which isn’t near as effective.

Hunky then stumbled upon the Foundation, was more than excited and would like to join but finances are very tight right now but Hunky would like to join and is particularly interested in the non medication and diet discussion.

Joining the Discussion Board does not require membership in the Foundation. It is open to everyone at no cost. As for the two discussion forums that you mentioned, you are more than welcome to post a note with a questions if you don't see what you need.

[Rustsmith]

Friday, October 22

Welcome to

colokid, whose RLS prior to treatment made colokid unable to function in daily life. The condition is now presently manageable with minimal inconvenience and occasional bouts.

We are happy to hear that you have your RLS under control. If you have any questions, just post a note and we will see what we can do to help you.

[Rustsmith]

Friday, October 22

Welcome to

CoachLisaB, whose RLS comes and goes, but she had such a bad bout of RLS last night that it took five hours to fall asleep. She doesn't have a diagnosis but will be talking to her doctor next month. Looking for some others who might have found solutions.

At this point, your best bet is soaking your legs in very hot water. If you don't have a tub, then a shower that hits the back of your legs and is as hot as you can stand will usually turn off the sensations long enough to fall asleep. Don't be surprised if your doctor doesn't seem to know much about RLS, very many do not. You should expect blood tests to measure your ferritin level and hopefully a possible prescription for gabapentin and NOT pramipexole(Mirapex), ropinerole(Requip) or rotigatine(Neupro). These later meds used to be first line treatment, but have fallen into disfavor and are how third line, just ahead of opioids.

[Rustsmith]

Saturday, October 23

Welcome to

Katycarleton@g, who despite excessive tiredness, can't fall asleep most nights due to RLS. Once she falls asleep, she will wake up within 30 minutes. RLS has negatively impacted her for as long as she can recall.

That sounds like the sleep experience that many of us have. If you would like some suggestions that may help, just post a note and tell us what you are currently doing to manage your RLS so that we will know where to start.

[Rustsmith]

Wednesday, October 27

Welcome to

Cindy doyle, whose RLS has caused many interruptions in her sleep and as a result, tiredness, sometimes severe, during the day and when she is driving.

If you would like some suggestions to reduce your RLS induced sleep interruptions, just post a note and tell us what you are doing to manage your RLS so that we will know where to start.