Restless Legs Syndrome (RLS) Discussion Board

21 of July, Tuesday - we welcome Happyhiker63.

Happyhike63 has RLS/WED in legs and arms and is looking for support.

You are in the right place. Let us know what you want support for - we can help with doctor appointments and much more. Start a new topic or add to one of the other existing posts.

Wednesday 22 July 2020

Welcome today to:

kathyronn - who has had RLS for as long as she can remember. It has become debilitating in the last year. kathyrobb has been seeking treatment from an RLS specialist but has been unsuccessful in finding relief. She is hoping the RLS Foundation and this Discussion Board can help.

We do hope that we can help. There is usually something else to try, some other combination to put together. As you have found, not all doctors who call themselves a Specialist are as knowledgeable as they should be. To help you we would need to know what medications you are taking at present and what medications you have tried without success. You can join one of the existing threads if it is suitable, or start your own thread. Everyone here knows how awful it is to suffer from RLS and we want to help you.

Welcom, phenry7.

You mentioned you cannot sleep or get relief and have tried several non medical remedies.

We have a lot of information here. Start a new post to ask question, or read existing posts - many ideas here that have worked for people.

Wednesday, July 22

Welcome to

optimismistrying, who has just started experiencing symptoms in the last 6 months. She is at a loss as to what brought it on and is currently trying iron supplements, but wanted to hear from other people in her position.

You have definitely started correctly by trying iron supplements. You should be taking a supplement that contains 65mg iron equivalent (that's 365mg of iron sulfate if that is what you are taking). It should be taken on an empty stomach and not with an antacid, milk or at the same time as a thyroid med. If you are taking iron sulfate, you should either take it with vitamin C or orange juice. But you should also ask your doctor to do blood work to determine your iron levels, especially your ferritin which needs to be specifically requested. You need to do this because too much iron can be harmful. But also understand that it can take weeks or months for iron to provide a benefit unless you are very, very low. In that case, your doctor might be willing to do an iron IV treatment, which can provide some relief in just a couple of weeks.

Thursday, July 23

Welcome to

marty, who has had RLS for over 20 years but it has got out of hand totally in last while.There is no drug that will touch it. marty is beginning to despair of getting a few hours even at a time or in a night !!!!

Please post a note telling us what meds you have tried and why they didn't work out. Our experience is that there is always something else to try.

Friday, July 24

Welcome to

Superlaw, who asks about the coverage (or lack thereof) of Horizant. The cost is almost $500 for only 30 days' supply!! Has the Foundation contacted/submitted a petition to CMS (Medicare) ???

The Foundation does not get involved with pricing of meds. Their primary emphasis has been insuring continued access to opioids since they are critical for so many. Also, Horizant is a modified version of gabapentin, which is inexpensive.

Saturday, July 25

Welcome to

fabwater, who was diagnosed about ten years ago after having sleep issues & thankful that the Dr. didn't think he was crazy when he told him about his creepy legs. He was started on low dose Pramipexole and life was good. Now after realizing that his worsening symptoms may be the result of augmentation he needs to find better coping strategies and support.

Does your doctor know how to treat augmentation? Take a look through our forum on augmentation to get an idea of what you will need to do to get off of pramipexole and what will need to be done to treat your RLS once you are off of it. Don't let them switch you to ropinerole or the patch, you will either need to try iron therapy, an alpha-2-delta ligand (gabapentin, Horizant or Lyrica) or an opioid. If you have any questions, please post a note so that we can try to answer them.

Saturday, July 25

Welcome to

Kansas, who hopes to end this problem. Kansas has had it had RLS for many years.

Although there are no cures, there are effective treatments to keep the symptoms under control. If you will post a note telling us what you are currently doing for your RLS, perhaps we can offer some suggestions that could help out out.

Sunday, July 26

Welcome to

starrynight, who is newly diagnosed with RLS and needs help figuring out how to deal with it.

We would be happy to answer any questions that you have. All you need to do is post a note with any questions that you have.

Monday, July 27

Welcome to

Ddymkowski, who For fears I has been on Mirapex to help sleep and is mow lucky to get 3 hours of sleep a night. Ddymkowski is beyond exhausted.

If you have been on Mirapex for years, there is a good chance that you are augmented. Take a look through our forum on Augmentation to learn more and feel free to post a note with any questions that you have about it.

Tuesday, July 28

Welcome to

thisisrob, whose symptoms are relatively mild - RLS keeps him up a few nights each month and sometimes it moves from his legs to his shoulder. It's not his favorite thing and it'd be nice to hear more about how people are coping with this.

Has your doctor done a blood test to determine your ferritin level? Many with mild symptoms can get relief by taking an iron supplement if their iron levels are low, but you need to do this under a doctor's supervision since too much iron can cause organ damage. And please feel free to post a note with any questions that you have. We would love to be able to get you some relief for those occasional bouts of RLS.

Wednesday 29 July 2020

Welcome today to:

Gibsonca -who is now 43 and has had RLS since age 17. It has progressively got worse and after some relief from the patch it has now augmented. Currently 60ish hours without sleep and at a loss as what to do next

So many of us, likely all of us, know exactly what you are going through. We need to have some more information to try to help you. Please start a thread in the Just Started forum telling us what you have done to try and control your RLS symptoms. What medications, if any, that you have tried and what what helped somewhat and what has not helped. You should know what your Ferritin Serum level is, this requires a specific blood test ordered by your GP. Please start your thread and we will take it from there.

Wednesday, July 29

Welcome to

jamesrobvin, who has had RLS since he was a child. He has been on a number of medications and needs some advice on how to relieve symptoms.

We would be happy to provide some suggestions but we need to have an idea of what meds you have tried so that we know where to start. So, please post a note so that we can get started and hopefully get you some relief.

Thursday, July 30

Welcome to

Rquirion, whose RLS has significantly impacted quality of life. She can rarely sit in the evening and watch a movie or take a ride with her husband without taking her RLS med first, which causes her to be tired. She also doesn't get a full night's sleep.

If you have any questions or would like advice on a subject, please feel free to post a note with anything that you wish.

Friday, July 31

Welcome to

Bandre, who has dealt with RLS for over 40 years. Bandre has quite a severe case and is worried it will get worse with age (currently 74).

Unfortunately, RLS often does get worse with age. If you would like us to provide you will some suggestions for improving your control, please post a note telling us a bit about what you are currently taking so that we will know where to start with our suggestions.