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JANUARY 2019 - New Members

Posted: Wed Jan 02, 2019 3:08 am
by Rustsmith
Tuesday, January 1

Welcome to

Napeir0, who is struggling with augmentation and she is afraid of opioids. After living with RLS for 51 years it is now out of control.

Please post a note telling us about your current RLS treatment(s) and what it is about opioids that you are afraid of. If it is addiction, that is something that has a very low chance of happening due to the low doses used to treat RLS.

Welcome to kavlac

Posted: Wed Jan 02, 2019 3:24 pm
by Rustsmith
Wednesday, January 2

Welcome to

kavlac, whose RLS has completely changed her life. She don't socialise much as she usually has to move or stand while chatting to friends and lack of sleep makes it nearly impossible to plan anything.

Please post a note telling us about any meds that you are currently taking so that we can offer some suggestions to improve the control of your RLS.

Welcome to Jebouthot

Posted: Thu Jan 03, 2019 6:11 pm
by Rustsmith
Thursday, January 3

Welcome to

Jebouthot, who has been suffering with RLS since childhood and now nightly. Also insomnia, so it is a double whammy. Just looking for any new info on how others deal with this disorder.

Insomnia is the other side of RLS, so they are all part of the disease. Most use medications to manage their RLS, so please post a note telling us a bit about what you are currently doing so that we can offer some suggestions.

Welcome to can'tstopwon'tstop

Posted: Thu Jan 03, 2019 7:09 pm
by Rustsmith
Thursday, January 3

Welcome to

can'tstopwon'tstop, whose has had sleepless nights since 2008 as well as full-body RLS. Stop augmented on a dopamine agonist in 2015 and is looking for the most up-to-date treatment information.

We would be happy to provide you with the latest treatment info. Please post a note telling us what you are currently using so that we can update you from there.

Welcome to ejaneberry

Posted: Fri Jan 04, 2019 2:47 pm
by Rustsmith
Friday, January 4

Welcome to

ejaneberry, who is miserable, up all night because her RLS won't stop. Morning for her is horrible as well. At night her legs are so moving all over like nervous shaking and the morning is when the horrid burning and pain starts. She is new to this need ways to calm it down. The meds she has tried is gabapentin and some other. Nothing has worked.

Please post a note with the name of the other med (if you can find it) so that we can offer you some specific advice. In me meantime, have you tried soaking your legs in a very hot bath to temporarily turn off the sensations?

Welcome to miserableinsc

Posted: Sat Jan 05, 2019 3:43 am
by Rustsmith
Friday, January 4

Welcome to

miserableinsc, who has experienced RLS in her twenties while working as an RN and periodically through the years. RLS has increased in severity over last 10 years. Now she has symptoms during the day, increasing in intensity in the afternoon, and becoming unbearable by bedtime. Currently, she is sleeping about 4-5 hours a night in increments of 1 1/2 to 2 hrs. She is exhausted!

It sounds like you may be experiencing augmentation from a dopamine agonist. If you will post a note telling us about your current and past medications, we may be able to suggest some things to discuss with your doctor.

Welcome to SLeeplessInAj

Posted: Sun Jan 06, 2019 9:34 pm
by Rustsmith
Sunday, January 6

Welcome to

SleeplessInAj, who is 63 years of RLS and still kicking. Now she also has Peripheral Neuropathy. Her breakthrough was fifteen years ago when she had a diagnosis and name for this misery. The major effect is that she is a chronic insomniac thanks to this disabling disease.

Please post a note telling us what you are doing to manage your RLS so that we can offer you some suggestions to help improve on your chronic insomnia.

Welcome to PerrySmith

Posted: Mon Jan 07, 2019 7:48 pm
by Rustsmith
Monday, January 7

Welcome to

PerrySmith, whose RLS has severely affected his life and sleep.

Please post a note telling about what you are doing to manage your RLS and asking any questions that you have.

Welcome to groggio

Posted: Mon Jan 07, 2019 7:51 pm
by Rustsmith
Monday, January 7

Welcome to

groggio, has RLS problems with some triggers: cortisone (any kind: pain creams, pills, shots), some anti inflammatories, when had to quit having opioids for back pain.

Loss of access to opioids would definitely cause your RLS to flair up again. Please post a note telling us what you are doing now to manage and asking any questions that you have. That way we may be able to offer some suggestions for improvement.

Welcome to Joyce

Posted: Wed Jan 09, 2019 2:07 am
by Rustsmith
Tuesday, January 8

Welcome to

Joyce, whose RLS is horrible. She can’t sleep much and her medicine no longer works.

Sounds like you may be experiencing augmentation. Please post a note telling us what you have been taking and asking any questions that you have. We may be able to suggest things to discuss with your doctor.

Welcome to Vanwing

Posted: Thu Jan 10, 2019 2:15 pm
by Rustsmith
Thursday, January 10

Welcome to

Vanwing, who has been suffering from RLS for months now and it seems to be getting worse and so would like to join the board to participate in conversations to maybe get better.

Please post a note telling us what you are currently doing to manage your RLS so that we can offer you some specific suggestions for improvement.

Welcome to eladkroy

Posted: Thu Jan 10, 2019 5:02 pm
by Rustsmith
Thursday, January 10

Welcome to

eladkroy, who is looking for ways to improve sleep.

Please post a note telling us what you are currently doing to manage your RLS. It would also help to know if medical marijuana is legal where you live. With that info, we should be able to make some suggestions to help you out.

Welcome to Kathywhi

Posted: Thu Jan 10, 2019 8:48 pm
by Rustsmith
Thursday, January 10

Welcome to

Kathywhi, who has found something that stopped her RLS.

We would love to hear about your experience. Success stories are always interesting.

Welcome to caser

Posted: Fri Jan 11, 2019 5:24 am
by badnights
Welcome to caser, who has had RLS for 50 years and feels the symptoms creep into arms and back at times, and worries about the effect of the medication on one's overall physical condition.

caser, feel free to start a Topic and tell us a bit about your experiences with WED/RLS. Are you taking a dopamine agonist? Those medications can cause symptoms to spread to the arms and torso, as well as start earlier in the day and become more intense. This phenomenon is called augmentation (see the link below my name below this post, for more information on augmentation). How long ago were you diagnosed?

Welcome to alphamare3

Posted: Fri Jan 11, 2019 8:34 pm
by Rustsmith
Friday, January 11

Welcome to

alphamare3, who has had RLS all her life. Her mother thought she was a hypochondriac when she would tell her that my legs tickled so bad that she couldn't lay in bed or sit still. As an adult, her biggest fear is flying. For some reason when she is on a flight, the condition seems to worsen and she feels trapped. It is excruciating to be on a long flight that has turbulence and the seatbelt sign is on. She is desperate at this point and looking for some kind of relief. It seems that all doctors that she has visited don't really understand the condition. She has tried magnesium and it seems to help some but not enough.

Long airline flights do that to all of us. You have listed a number of questions already. If you will post a note, we can provide answers to many of them. For example, you may need to get taking iron instead of magnesium. But that should be done under the supervision of your doctor. Since you doctors haven't been able to help, we may be able to help you locate one who can.