AUGUST 2020 - New Members

[Rustsmith]

Monday, August 17

Welcome to

melindasuem, who onlys sleeps 2 - 3 hours a night and although she takes ropinerole, it doesn't always work and she is always so tired and her anxiety level is very high. She would like to get some ideas from others about what gives them relief.

We would love to be able to offer you some suggestions to improve your situation. If you would be willing to post a note to tell us about the dose of ropinerole that you are taking and how long you have been on it, we can give your some suggestions about improving things.

[badnights]

Welcome today to restlesspartner, whose boyfriend has WED/RLS.

Restlesspartner, you will find a lot of information here. There is a Topic in the Just Joined forum called A Good Place to Start. After checking that out, you can search for posts that mention keywords, using the search bar at top right (and the gearwheel icon beside it will give you the advanced search page).

The RLS Foundation website is also a good resource for basic information, and although most of that information is available to members only, the membership fee is cheap (and is one of the few ways the Foundation gets money to support research and advocacy, since they don't take donations from pharmaceutical companies).

But for now, start with the Good Place to Start topic, and/or start a Topic of your own and describe your boyfriend's situation. How long has he had it? Does he take any medications for it? How is it affecting his life?

Welcome, and I hope you find all that you need here.

[badnights]

Welcome to mvic, who says "I am starting to feel anxious and depressed. I do not have leg movements but have nerve sensations."

The first thing is to establish whether you actually have RLS/WED. There are 5 criteria that must be met:
- you have an URGE TO MOVE your legs (and possibly other body parts), probably accompanied by nasty sensations (some of us say pain, others find the sensations too bizarre to describe; universally, however, they are uncomfortable, which is putting it too mildly)
- the urge and sensations are WORSE IN THE EVENING AND EARLY NIGHT
- they are TRIGGERED BY REST, that is, by both physical and mental relaxation (WED/RLS is a disorder of the resting state)
- the urge and the sensations IMPROVE WITH MOVEMENT. That's not just a shift in position but actually getting up and walking around
- there is no other disorder causing these symptoms (in other words, the doc has to eliminate all other possible causes of those 4 criteria to be sure that you actually have WED/RLS).

You can probably diagnose yourself if you consider each criterion carefully, but there are some tricky conditions that mimic RLS/WED. The key here is the urge to move. If you don't have an urge to move, you don't have WED/RLS. The most common mimic of WED/RLS is peripheral neuropathy, which can create bizarre sensations in the legs, but usually does not cause an urge to move.

Please feel free to start a Topic and tell us more about yourself. We can't diagnose you, we;re not doctors, but we will certainly give you our opinions, and give you advice for dealing with your doctor, if need be.

[Rustsmith]

Tuesday, August 18

Welcome to

kathy4738, who it seems cannot quiet her legs once they become restless. Oftentimes, it makes going to sleep at night very difficult.

Unfortunately, RLS is a condition where the best approach is prevention rather than trying to treat the urges once they start. One trick that many of us use when we end up with the urge to move (other than walking around) is to soak in very hot or very cold water. This can help shut down the urges for long enough to hopefully be able to fall asleep. If you would like to hear more suggestions from the group, post a note telling us a bit about what you are doing to manage your RLS so that we will know what sorts of things that we can suggest.

[Rustsmith]

Thursday, August 20

Welcome to

LeeRoyJenkins, who was recently diagnosed with RLS at age 19 and wants to ask other more experienced people some questions.

We would love to answer any questions that you have about RLS. If you will post a note with any questions that you have, we will do our best to answer them.

[Rustsmith]

Friday, August 21

Welcome to

SHW, whose RLS causes fatigue from sleeplessness and misery when nothing stops the movements.

If you would like to post a note with any questions that you have or requests for suggestions for improving the control of your RLS, just post a note.

[Rustsmith]

Tuesday, August 25

Welcome to

SleepyBhamster, who thought it was just antihistamines that gave her restless legs, but 2-3 years ago while trying to withdraw from klonopin, she had terrible restless legs. She hardly got any sleep for 2 years. She finally got Requip prescribed this year, but can't find a dose that takes care of RLS and still lets her function during the day. She is getting rather desperate.

Klonopin is a tough med to get off of, which is part of the reason that it isn't used as much now as it used to be. We should be able to offer you some suggestions to improve, but you need to post a note telling us about your Requip dose so that we will know where to start.

[Rustsmith]

Tuesday, August 25

Welcome to

CKeenan, who was diagnosed with RLS 20 yrs ago and continues to struggle with it. CKeenan take Mirapexs to treat it and it is getting worse RLS age, which is very concerning. CKeenan wants to learn more about how iron infusions may help for people that have low ferritin.

We have a number who have been helped by iron infusions. I am sure that they would be willing to answer any questions that you have. All you need to do is post a note with your questions.

[Rustsmith]

Wednesday, August 26

Welcome to

ellecee726, who has had RLS for decades and it is getting worse. She can’t sleep and hopes diet can help. The low oxalate diet is very intriguing to her.

Since it appears that you have already seen our discussion on the low oxalate diet, feel free to jump in and post a note with any questions about it that you have.

[Rustsmith]

Wednesday, August 26

Welcome to

wilbron, who would like to learn more about RLS and to know what treatments, medications, etc. that other users have found helpful.

We would be happy to help you out and answer any questions that you have. If you don't find what you need, simply post a note with whatever questions that you have.

[Polar Bear]

28th August 2020

Today we welcome

Leg - who cannot sleep and so experiences all of the effects of this.....

Leg, lack of sleep is just about the biggest problem we all have, we all will know exactly how you feel. You will see this as you read through the threads. If you have any questions please do start a thread, or comment on a relevant existing thread.

[Rustsmith]

Saturday, August 29

Welcome to

SpecialK, who has struggled with RLS for years but symptoms have gotten much worse. She is desperate for help.

We would be happy to provide you with suggestions of things that would help regain control of your RLS, all that you need to do is post a note telling us a bit about what you are currently doing so that we can offer suggestions that are relevant to your situation.

[Rustsmith]

Saturday, August 29

Welcome to

jqrestlessdiscussion, whose RLS is real and is searching for ways to be able to manage augmentation. looking for direction.

Take a look through our forum on augmentation and feel free to post a note with any questions that you have. Most of us have been through augmentation, so we should be able to answer any questions that you have.

[Rustsmith]

Saturday, August 29

Welcome to

Sharon A, whose RLS has changed her life completely with sleepless nites. She only gets 4 hrs sleep at best. Not much sitting, no movies, restless and irritable when legs and arms are killing her, depression, etc.

We can all relate to those issues. If you have any questions, feel free to post a note asking whatever you like and we will be happy to try to answer them.

[Rustsmith]

Monday, August 31

Welcome to

tomfoley60, whose RLS causes lack of sleep, anxiety and feeling dragged out. Drinking alcohol and eating sugar makes It worse.

If you have any questions or would like some specific advice, feel free to post a note. Or you can simply jump into an existing discussion topic.