MAY 2021 - New Members

[Rustsmith]

Saturday, May 1

Welcome to

Kalix, who was diagnosed with ADHD last year and has been really struggling with a lot of things she didn't notice about herself. She had only started hearing about RLS recently, and it might explain her issues with keeping her legs (and sometimes arms) still. She shifts a lot while working and it's distracting and further ruins her focus. She also doesn't sleep well at all and tosses and turns. She is hoping to learn more before approaching her doctor about it.

First you should know that most doctors have little or no knowledge of RLS beyond what the pharmaceutical sales reps have told them. There are also no tests (beyond checking iron levels in the blood), so diagnosis is done using a series of questions. To see these questions, take a look at this website: http://irlssg.org/diagnostic-criteria.

And if you have any questions, please feel free to ask by posting a note.

[Rustsmith]

Sunday, May 2

Welcome to

marcnoom, who almost 30 years ago, when he worked in a different city, sometimes went home late in the evening by train. He noticed this unpleasant sensation in his legs as he was very tired and tried to relax in the train. Over the years the symptoms became worse, and it affected his ability to sleep. Only 5 years ago, he read about RLS and decided to go to a hospital where they specialize in sleeping disorders. He was diagnosed with RLS, and from that moment began a journey with trying to understand this syndrome and trying to find a way how to deal with it. This journey is still continuing today.

We would be happy to help you further along with your RLS journey. If you would like our comments, all you need to do is post a note with any questions.

[Rustsmith]

Monday, May 3

Welcome to

Donna3b, whose RLS is so bad on some nights she can't stand it. Then she wakes up in the morning and her legs ache from jumping so much the night before. She can't attend plays or performances in the evening because her legs will jump. Same thing with going out to dinner. Since she must go by 5 p.m. or be miserable.

Those are all issues that anyone with RLS can relate to. If you have any questions or would like some suggestions, just post a message for us.

[Rustsmith]

Monday, May 3

Welcome to

Sleepeasy!, who is a person with Parkinson's. He was feeling like that was enough to deal with, then he began experiencing RLS. It has caused him to be more understanding of his spouses challenge as she has been dealing with this for twenty years. And it has caused him to be more aggressive in understanding how he can help both of them by understanding what others have experienced.

We would love to be able to help you out. Our best advice at this point is that if your neurologist isn't highly familiar with treating RLS, then it would probably be a good idea to find one who is. Sadly, neurologists are much more likely to be familiar with treatment options for Parkinson's than they are for RLS, but your wife has probably already encountered that. If there is anything that we can do to help, just post a note with your questions.

[Rustsmith]

Tuesday, May 4

Welcome to

linkel8891, who has been affected by RLS for over 25 years. linkel is 64 now and it's getting progressively worse; now affecting upper body too. linkel's doctor knows little about it and doesn't seem interested in researching it. So linkel is looking to share experience as well as hopefully find information that could help ease the condition.

Please post a note telling us about what you are doing to manage your RLS. It sounds like you may be starting to augment on your medication. If so, we can tell you what to explain to your doctor so that you get through it as easily as possible.

[Rustsmith]

Wednesday, May 5

Welcome to

romerotm, who doesn't sleep much. She can't sit for long periods of time and taking trips is beyond frustrating. She also can't sit in seminars or retreats.

We would love to help you out with suggestions to improve how you manage your RLS. All that you need to do is post a note telling us what you currently do so that we will know where to start.

[Rustsmith]

Saturday, May 8

Welcome to

corvettecj, who is retired and 66 years old. RLS is affecting the quality of life and corvettecj needs to get it under control. Corvettecj's doctor prescribed Carbidopa for treatment. It doesn’t always work.

Carbidopa isn't a medication that is appropriate for everyday use in treating RLS. It will rapidly cause augmentation, a side effect where the medication stops helping and starts aggravating your RLS. This is an indication that your doctor is not familiar with treating RLS and therefore you probably need a referral to a specialist who does understand RLS. I would encourage you to post a note telling us a bit more about your symptoms so that we can offer you our best advice that is specific to your situation.

[Rustsmith]

Monday, May 10

Welcome to

happydance22, who is retired and 66 years old. RLS is affecting the quality of happy's life and needs to be brought under control. Happy's doctor prescribed Carbidopa for treatment. It doesn’t always work.

Carbidopa/Leodopa is not an appropriate medication for daily use in treating RLS. It will quickly cause augmentation. There are a number of much better medications that you could use. If you are interested, you can post a note and we can provide you with suggestions that you can share with your physician.

[Rustsmith]

Monday, May 10

Welcome to

maggiemoo, whose RLS has left her exhausted so often because many nights she finds herself awake at 2 or 3am and cannot sit still. She walks around the house and has to stand to lessen the restless feeling. Medication is now less effective.

We may be able to help improve control of your restlessness if you are comfortable posting a note telling us a bit about what you are taking.

[Rustsmith]

Tuesday, May 11

Welcome to

wits'end, who has had RLS for over 35 years, and it's getting worse (wits'end is in the 70's). wits'end is hoping to read about any new or novel treatments -- and is happy to share adventures in trying to tame the RLS 'beast' (though given wit'send's current lack of success, maybe is not the best person to listen to).

You can find a couple of new treatments discussed in our files (search on adenosine), especially in our research folder at the top of the General Topics forum. Or you can post a note asking for suggestions of anything new or different from what you have tried.

[Rustsmith]

Friday, May 14

Welcome to

Yungdum, who thinks that RLS is the worst thing ever experienced. It keeps Yungdum awake every night and nothing seems to help.

There are ways to treat your RLS so that you can get some sleep. If you will post a note telling us what you are currently doing to manage your RLS, if anything, we can suggest what you can do to improve your situation.

[Rustsmith]

Tuesday, May 18

Welcome to

mojofam, who is interested in learning from other who have RLS. Mojofam is having difficulty with this on a nightly basis and finds it hard to function during the day.

We would be happy to help you out. All that you need to do is tell us a little about what you are currently doing for your RLS so that we can have an idea where to start with our suggestions.

[Rustsmith]

Tuesday, May 18

Welcome to

Timothysskane, whose legs jump up to 12 hrs a day affecting his sleep and intimacy with his mate. They now jump while he is walking, his arms move without control and he finds it difficult to go to the bathroom because his legs jump while on the commode. He has sensations in his face now too, his Dr just told his that there is nothing more he can do and he augmented. He thought he understood RLS...

First off, your doctor isn't correct that there is nothing more unless he means that there is nothing more that he is ALLOWED to do. Many of us are post-augmentation and there are lots of meds that are available to try. The problem is that many of them are opioids and many doctors are either afraid to prescribe them or their practice will not allow them to. If you would like some suggestions, all you need to do is post a note telling us what you are currently taking for your RLS (please include the dose) so that we can give you some ideas of what you need to do to improve your life.

[Polar Bear]

Wednesday 20th May 2021

Welcome today to:

Gloria1563 - who is finding it hard to sleep at night with the expectation of body movements.

Yes, it is difficult to relax when you are lying there and wondering when and if the horrible symptoms will start. You mention body movements and I assume that this is your legs although other parts of the body can be affected also. If you feel ready please start a thread and tell us a little about how you suffer, what part/s of the body, does walking help give some easement, have you been officially diagnosed with RLS/WED. Are you taking any medication, prescribed or over the counter, what doses do you take. The more information you provide the better we are able to help you.

[Rustsmith]

Saturday, May 22

Welcome to

mcrowe116281, who has had RLS to some degree since childhood. At 58 years old mcrowe is now trying to transition to the third medication and would love to find someway to not have to take drugs every night.

Many of us don't have a choice about taking a medication each evening, but there are some people who are able to get by without. If you are willing to tell us what you have been taking, we may be able to suggest whether something else might work for you.