JANUARY 2020 - New Members

[Rustsmith]

Friday, January 1

Welcome to

RLSEXP2, who has had Chronic RLS for about 16 years. She has got to the stage where this disorder defines who she is. All activities and much planning centres around how bad her legs are and how bad the lack of sleep will be.

Many of us can relate to long term poor sleep and restricted activities. If you have any questions or would like some suggestions for improving control of your RLS, just post a note and we will try to help you improve your situation.

[Rustsmith]

Saturday, January 2

Welcome to

sashay, whose RLS symptoms are annoying. Medication is not working effectively. Would like to get information on how to lesson the symptoms.

We can probably help you with suggestions for improving control of your symptoms. If you would like our comments, all that you need to do is post a note telling us about your meds so that we will know where to start.

[Rustsmith]

Saturday, January 2

Welcome to

jlty, who has had RLS for over 36 years and has tried many medication and nothing has helped.

Our experience has been that if what you have is truly RLS, then there are a couple of meds that will always help, but that may cause side effects in the long run. In that case, once you find something that works, then there are always alternative that can be tried. If you would like our suggestions of things to try, please post a note that summarizes your failures so that we will have an idea of where to start.

[Rustsmith]

Saturday, January 2

Welcome to

Hamad, who is plagued with RLS. He just turned 71, and wishes to be able to sleep well at night. He can't remember the last time he had a good night sleep.

We can't promise a good night's sleep but we can probably provide some suggestions to improve your sleep. If you don't find the answers already on the board, just post a note with any questions you have and/or tell us what you are currently doing to manage your RLS so that we will know what to suggest.

[Rustsmith]

Saturday, January 2

Welcome to

RoA, who wants to learn about RLS. RoA has the condition which is genetic. Life can be fairly miserable.

We would love to answer any questions that you have. All you need to do is post a note to ask whatever you would like. And if you would like suggestions for improving control of your legs or sleep, let us know what you are currently doing to manage your RLS.

[Rustsmith]

Sunday, January 3

Welcome to

Catherine, who suffers badly from RLS in her entire body. She would like to stay up-to-date regarding any treatment/cure progress. There is no support group in her area.

Essentially, we are the support group for those who do not have in close by. If you have RLS in your entire body, there is a good chance that you have augmented on your meds. If you would like more info, please post a note telling us what you are taking so that we can start a discussion.

[Rustsmith]

Sunday, January 3

Welcome to

Chrystal, who has had RLS for many years and it causes her distress and unbearable discomfort.

We can all relate to the distress and the unbearable sensations caused by RLS. If you have any questions or would like suggestions on what medication changes you could consider, just post a note and we will respond.

[Rustsmith]

Sunday, January 3

Welcome to

Snappergirl, who has had RLS since childhood. Long car trips were torture. It’s a nightly battle now in her 60s.

If you have any questions or would like suggestions for reducing the urge to move or improving sleep, just post a note and let us know where we should begin with our suggestions.

[Rustsmith]

Monday, January 4

Welcome to

joyfulb, for whom RLS has affected joyfulb's mother, son and self. It has caused many sleepless nights! joyfulb has been taking meds for the past 10 years and is running out of choices. Therefore, joyfulb would like some advice on what others take and their experiences.

We would be happy to provide that sort of advice to you. If you are comfortable telling us what you are taking and have taken, that will tell us where to start with our suggestions.

[Rustsmith]

Monday, January 4

Welcome to

jnail43, whose RLS affects continuous sleep. jnail also has central and obstructive sleep apnea to compound the problem. Mirapex is the current medication. Ropinirole became unbearable because of augmentation.

Have you had your ferritin levels checked? Increasing iron could help. Gabapentin or Lyrica are also alternative meds since you augmented on ropinerole. If you have any questions, just post a note and we will try to answer them.

[Rustsmith]

Monday, January 4

Welcome to

smorleygatti, who has struggled with RLS for two years now and is so tired. He has been avoiding drugs and wants support in managing this crazy condition.

Crazy is right!! If you want to avoid using medications, then take a look through our forums on Physical Treatments and Non-Prescription meds. You should also talk to your doctor about getting your ferritin level in your blood checked along with a regular iron panel since low ferritin can be responsible for RLS and can be easily resolved without meds.

[Rustsmith]

Tuesday, January 5

Welcome to

Cfree10516, who has not had a good night sleep in years, which affects daily life, and who is always tired. Cfree is scared to go to functions requiring sitting, which has affected social life. It also affects Cfree's mental outlook on life because it feels like fighting a wall to get thru the day.

If you are willing to tell us a little bit about what you are currently doing to manage your symptoms, we may be able to offer some suggestions that will allow you to go about your daily life with fewer limitations.

[Rustsmith]

Tuesday, January 5

Welcome to

JacquieC, whose sleep is severely disrupted with one to two nights in three wandering the halls.

We all know what having several bad nights in a row feels like. If you have any questions or would like some suggestions for improving control, just post a note.

[Rustsmith]

Tuesday, January 5

Welcome to

newwoman, who is unable to sleep at night. She becomes very cranky after a week or so. She is about to begin medication.

If your new medication is either pramipexole (Mirapex) or ropinerole (Requip), then your doctor should have also done blood work to determine your ferritin level. Ferritin levels below about 75 can reduce the time until you experience augmentation on these meds, which is a side effect where they stop working and start making your RLS worse. Also, your doctor should have gone over the potential of Impulse Control Disorders on these meds.

However, if your doctor is familiar with the latest treatment guidelines for RLS, then you are starting on gabapentin or Lyrica. These meds only work for about 65% of patients and can trigger depression (on to of blue moods due to sleep deprivation). Either of these is a reason to return to your doctor to switch to something else.

[Rustsmith]

Tuesday, January 5

Welcome to

elsa944$$, whose most significant issue has been that she reads less, especially where "nonessential" reading is concerned. Sure, she can read articles and news on the computer, especially in the morning. But sitting down in the late afternoon with a novel? No more. She is a writer, thus a lifelong book lover but has to plan reading time now. The upside of this %$#@! disease? Her home is much much cleaner. It's sometimes less painful to vacuum, etc., than to sit and read.

We understand and sympathize with your situation. If we can help by providing suggestions on how to minimize the symptoms, just post a note to tell us what you are currently using and asking any questions that you have.