JUNE 2021 - New Members

[Rustsmith]

Saturday, June 12

Welcome to

Yogajunkie, who has had RLS for 20 years She is constantly looking to find relief without medication and share info with others.

How wonderful that you are able to manage your RLS without medication since that is not an option for many of us. Please post a note to share what you are doing so that some of us can add that to our bag of tricks.

[Rustsmith]

Saturday, June 12

Welcome to

Carly, who has had RLS for almost 20 years now. It has affected her sleep and the quality of her life daily. She loves to exercise but exercise exacerbates her RLS symptoms so she pays for it dearly.

Are you taking anything to help manage your RLS symptoms? If you have any questions or would like suggestions for your options to be able to exercise more, just post a note to let us know how we can help.

[Rustsmith]

Sunday, June 13

Welcome to

btroxel, who has been caring for his wife after her stroke, which has created stress and now he has RLS. It has created difficulty with sleeping especially from midnight to 4 am.

Have you seen a doctor so that your RLS is being treated? If not, her neurologist might be a good place to start. If you have any questions or would like some suggestions to improve your sleep, just ask.

[Rustsmith]

Monday, June 14

Welcome to

Grammy1956, who has bad RLS. She loses a lot of sleep. She was on ropinerole, but built an immunity to it. The doctor wouldn't give her more than 4mg a day. The doctor said that is all that is allowed for RLS. Extended release or individual .. didn't matter. The doctor put her on Mirapex.. 0.25. She started it last night and she is suffering. She had horrible pain and muscle tightening.

You probably didn't develop immunity to ropinerole, you developed augmentation. Augmentation is a side effect of all of the dopamine agonists and most doctors are not familiar with it. You are fortunate that she knew enough not to prescribe more than 4mg/day. But once you have augmented on one dopamine type med, you should not just switch to another one. You need to investigate the other treatment options, such as iron therapy, gabapentin or Lyrica or one of the opioids. If you don't find what you need to get a better idea, just post a note and we will be happy to help.

[Polar Bear]

Tuesday 15 June 2021

Welcome to:

Tiffrls - whose severe rls has affected every aspect of his/her life. Now on the third medication for it and looking for other alternatives.

Most of us have to try different medications and different combinations of medications as we struggle for relief from our symptoms. There is always something else to try and we are here to try and help. If you make a post and tell us what medications you have tried, the doses, what did or did not work, what blood results you may have, we will do our utmost to help.

[Rustsmith]

Tuesday, June 15

Welcome to

mhallora61, whose lack of sleep makes daily life very challenging.

Yes, that is a challenge that we all know far too well. If there are any suggestions that you would like to be able to better control your RLS or any questions that you have, just post a note and ask.

[Rustsmith]

Tuesday, June 15

Welcome to

Martyjbird, who almost hates the onset of evening since he never knows how bad things will get. Sometimes ruins his mornings and afternoons, as well. Not sure how people coped before medications. He says that he might have blown his brains out.

Most of us with agree that we evening is the approach to the time of day that we like the least. If you have any questions, just post a note and ask away.

[Rustsmith]

Wednesday, June 16

Welcome to

Lynn44, who was diagnosed with severe RLS and the meds just dont help sometimes. She has been told its all in her head. Her question is, is she crazy and is RLS really a mental thing?

RLS is a disease that originates in the brain, but it is not a mental thing. Doctors that say that are usually do not know how to properly diagnose or treat RLS and so they feel that they need to blame the patient. We can probably provide you with some guidance to either suggest some things for your doctor to provide that will help or steps on how to find a doctor who understands and "gets it" when it comes to RLS. All that you need to do to get the discussion started is to post a note to provide us with a bit more background.

[Rustsmith]

Wednesday, June 16

Welcome to

Kling4747, who has been treating RLS with Mirapex, but is having augmentation. Kling is looking for a protocol to wean off Mirapex.

You can find quite a bit about augmentation in our Augmentation forum. As for getting off of it, a lot depends upon your current dose. If you are taking more than 0.5mg, then you have to be careful to avoid DAWS (dopamine agonist withdrawal syndrome), which can cause permanent damage that cannot be treated. If you are at 0.5mg or below, there are two approaches, one involves the use of about 5 to 7 days on an opioid to cover the withdrawal effects followed by stopping the opioid (unless you need to go onto it afterwards for your RLS). The other involves stopping without the aid of another medication and this will result it 5 to 7 days of zero sleep (not even short naps) with gradually increasing amounts of sleep after that. During the withdrawal period, you will experience the worst RLS symptoms ever. But you will return to whatever your baseline RLS is after 3 or 4 weeks and can then decide if you still need a med for your RLS and whether that med should be something like gabapentin or if it needs to be a low dose opioid.

If you have any questions, feel free to post a note and we can provide even more specifics to discuss with your doctor.

[Rustsmith]

Thursday, June 17

Welcome to

TR70, whose RLS has tormented attempts to get to sleep for decades. TR70 often spends 2-3 hours or more jumping, stretching, taking medications (600-1200mg Gabapentin), and doing other activities to alleviate the intolerable "electrical buzzes" in one or both legs. TR70 is now scheduled to try intravenous iron. Desperately hope this works ! ! !

IV iron helps many, but not everyone. So we hope that you fall into the group who benefit from it. If you have any questions, feel free to post on the board.

[Rustsmith]

Thursday, June 17

Welcome to

Sadela, who has primary RLS. She has a hard time sleeping. RLS hits her in the early morning and in the evenings.

Are you currently taking any meds to manage your RLS? That might explain the early morning problems. Either way, feel free to post a note with any questions that you have so that we can try to assist you.

[Rustsmith]

Saturday, June 19

Welcome to

Grasshopper, who feels fortunate not to have to deal with it too often, it comes and goes but when she gets it, she gets it. Last night she didn't sleep at all.

That can be one of the irritating things about RLS, the night-to-night variability. If you have any questions or would like some suggestions for getting better control, just post a note.

[Rustsmith]

Saturday, June 19

Welcome to

FrodoFan, who is joining for both herself and her husband. He has had a relatively sudden onset of RLS and is not responding well to treatments. She is looking for input from others.

We would be very happy to offer our input, all you need to do is post a note that tells us what we can provide.

[Rustsmith]

Saturday, June 19

Welcome to

susanjchar, who wants to share her experience with RLS and hear those of others.

We look forward to hearing from you.

[Polar Bear]

Wednesday 23rd June 2021

Welcome today to _

MtnLvr828 who has suffered with this for 50 yr making evenings unpredictable. Medical professionals know less than he/she does making it impossible to get good help. It has worsened over the years making some nights unending misery.

We understand how you are feeling as finding good help is a challenge. When you are ready please post and tell us how you have been coping with your RLS. Have you taken prescribed medications and if so what has worked and what has not worked. We will do all we can to help you.