JANUARY 2020 - New Members

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Ziggypiggy

Post by Rustsmith »

Wednesday, January 6

Welcome to

Ziggypiggy, who wants to join to research medicine that will help with mood.

Treating depression can be a challenge for those of us with RLS. We can provide some suggestions of things to try if you will post a note telling us a little bit about what you are currently doing to manage your RLS so that we will have an idea of what is compatible.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Lizbut

Post by Rustsmith »

Thursday, January 7

Welcome to

Lizbut, who has had RLS for 43 years. She is taking ropinirol, but reducing it. She can't sit and concentrate so she finds it difficult to read.

If you are reducing ropinerole, will your doctor provide an opioid to help you when it comes time to stop? Stopping without an opioid dooms you to about a week with absolutely zero sleep and slowly increasing amounts each night for the next few weeks.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to vhhomer

Post by Rustsmith »

Friday, January 8

Welcome to

vhhomer, who has had RLS for 25 years and takes Mirapex for it with some success. At times RLS interferes with sleeping and is quite disruptive. From time to time vhhomer experiences augmentation and has to cold turkey Mirapex for a couple days to get it to work again. Managing RLS has been a major factor in vhhomer's life.

We are glad that you have been able to return to Mirapex following a drug holiday because generally it isn't advised to take a dopamine agonist following augmentation. But everyone is different and if this works for you, then great. If you have any questions, feel free to post a note and we will do our best to answer them.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Niki

Post by Rustsmith »

Sunday, January 10

Welcome to

Niki, who can’t sleep without medication, for years paracetamol and codeine (500/30) and now she is taking Repreve (aka Requip or ropinerole). Her symptoms are getting worse. She needs to find a better solution.

Since your symptoms are getting worse on Repreve, there is a good chance that you are experiencing augmentation. Augmentation is a side effect that is specific to RLS and dopamine meds where the med starts making your RLS worse rather than provide relief. If it is augmentation, then you need to get off of (and stay off of) dopamine agonist meds like Repreve and Mirapexin. Getting of of Repreve will be difficult. Take a look through our forum on Augmentation to get an idea of what is ahead. And if you have any questions, feel free to post a note so that we can try to answer them.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to beagleslp

Post by Rustsmith »

Sunday, January 10

Welcome to

beagleslp, whose first symptom of RLS were when she was a senior in high school. She is now 69! For the first 6 years she had symptoms frequently, her doctor did not acknowledge that RLS was a real thing. All of a sudden, he did and she began taking Klonopin. Thankfully it worked for many years, but in the past couple of years she has had to add gabapentin and ropinirole. She has been experiencing severe symptoms at night after trying to go to sleep. She made an appointment with her doctor to discuss other meds, but after she and her 3 children have become concerned about her loss of memory, she decided she wanted her PCP to help wean her off of the clonazapam (Klonopin) so now she looking for all non-medicine ways to help her get to sleep. That is why she would like to get other's input and suggestions.

Take a look through our Non-Prescription meds and Physical Treatments forums to get an idea of what works and what doesn't. Has your doctor checked your the ferritin level in your blood? It should be over 75. Oral iron supplements might help if it is low and that might help your RLS. Another common trick is to soak in a very hot bath immediately before going to bed. For some reason, that seems to help calm the legs. If you have any questions, please feel free to post them and we will do our best to answer.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Jane321

Post by Rustsmith »

Tuesday, January 12

Welcome to

Jane321, who is just looking for validation from someone else that her experience with RLS is real. Her sleep study confirmed severe RLS. She lives life on the edge of exhaustion—sleep pattern ridiculous and unpredictable.

We would be happy to help you out. If you will post a note telling us a bit about your symptoms, we can tell you if that is similar to ours. In the meantime, you can also check the official set of diagnostic questions at http://irlssg.org/diagnostic-criteria
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Lauraf

Post by Rustsmith »

Wednesday, January 13

Welcome to

Lauraf, who has been on ropinerole for three years which allows her to sleep at night. It went from a lifelong occasional nuisance and family joke to another level entirely, really frightening. Without the drug she cannot sleep for leg spasms every 15 to 45 seconds, secondarily causing heart racing and anxiety. She lives in fear that the drug will lose effectiveness. Loss of sleep...complete loss of sleep is intolerable.

Although you can pretty much count on ropinerole eventually losing effectiveness due to augmentation, there are other options that are open when that time eventually comes. Hopefully that will be a long, long time from now. In the meantime, if you have any questions, feel free to post them in a note and we will try to answer them.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Mascolom

Post by Rustsmith »

Thursday, January 14

Welcome to

Mascolom, who has had RLS for many years. He says that at its worst it is excruciating and that medication is a godsend.

We would all agree that medication is critical to our lives. If you have any questions, feel free to post a note and we will do our best.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to monalisa

Post by Rustsmith »

Friday, January 15

Welcome to

monalisa, who started getting these very uncomfortable feelings in her legs a few years ago. It would start at night while in bed. She would have to keep moving her legs to make the strange feeling go away. Then it would come back and she would have to move her legs again and the same thing over
and over again. Sometimes she would get up at night and walk around. She also found some Theraworx that helps to increase magnesium and so she uses that sometimes and also sometimes she uses a heating pad to relieve the symptoms. She is not sure if it's RLS but it certainly bothers her when it starts happening.

That certainly sounds like the symptoms of RLS, especially at night while in bed, an uncomfortable urge to move and the urge is relieved by moving but returns when the movement stops. Magnesium may not help too much, but you should ask your doctor to do blood work to check your iron levels, especially ferritin. Low iron can result in RLS symptoms but you shouldn't take iron without checking with your doctor since too much can be harmful. In addition to the heating pad, you might try soaking your legs in very hot water. This often helps relieve the urge long enough to fall asleep. Finally, don't let your doctor start you out on Mirapex (pramipexole) or Requip (ropinerole). These drugs should not be used until you have failed iron therapy AND have found that gabapentin or Lyrica do not help. If you have any questions, please feel free to post a note and we can explain even more.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to HayaAnsiklopedisi

Post by Rustsmith »

Saturday, January 16

Welcome to

HayaAnsiklopedisi, who wants to share the pain of RLS and Haya's family has this disease both mother and grandfather.

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

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Carol G

Post by Rustsmith »

Saturday, January 16

Welcome to

Carol G, whose RLS has affected all her hobbies, reading, enjoying drives and of course sleeping. She doesn't believe those who have not experienced it can fully understand what it means to walk 2 hours of more during the night when others are sleeping, or not being able to curl up with a good book, or standing instead of sitting to eat lunch so RLS doesn't get started. Or, when necessary, submerging your feet in cold water.

You can be sure that we all understand. If you would like some suggestions on how to possibly improve the management of your RLS or if you have any questions, please post a note and we will do what we can.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Welcome to BonnieWills

Post by badnights »

BonnieWills was on Mirapex for many years but was taken off it for reasons unknown & put on opioids, which caused other problems. BonnieWills is now going through withdrawals from opioids.

BonnieWills welcome to the group. Isn't this a dreadful disease? If you start a Topic, you can give us more background. e.g. What does your doctor plan to treat you with next? and ask any questions you might have. The members here are gracious and considerate and you will find lots of understanding for what you are going through.

You can also post comments and questions in reply to other posts. If you have any problems, just let one of the moderators know, either in a private message ("PM") via the link at top right or via email to rlsfmods@bb.rls.org.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to LindaO

Post by Rustsmith »

Sunday, January 17

Welcome to

LindaO, who has been describing symptoms for almost a year and they have been increasing to the point of waking her at night. It was confusing because it sometimes involves her hands as well. All she could say was they are her “creepies”. Iron supplements are helping and she saw that it is linked to RLS. It seems she has found the beginning of her solution!

Iron therapy is the first line treatment for RLS. You should have your doctor do blood tests to check you for anemia and to determine your ferritin level. If you are anemic, there is a good chance that you could get an iron infusion, which could resolve your "creepies" in a matter of a week or two. If you have any questions, please post a note and we will do what we can to answer them.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Chivers

Post by Rustsmith »

Monday, January 18

Welcome to

Chivers, whose RLS has affected every aspect of her life. She was diagnosed in 2002; but, had it for many years. it has gradually increased in intensity and makes it difficult to rest, sleep, enjoy visiting and attending sit down functions. In other words, she grins and bears it!!

We can all relate to that. Are you taking anything to manage the symptoms? Do you have any questions about RLS that we could answer? If so, just post a note and we will tell you what we can.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Cawilson7

Post by Rustsmith »

Monday, January 18

Welcome to

Cawilson7, whose RLS has been an issue since childhood although it didn’t have a name. RLS affects Cawilson's quality of sleep, depression, and ability to be understood.

Even doctors usually understand RLS if they have it themselves. If you have any questions or would like a suggestion on how to improve control of your symptoms, just post a note and we will do what we can.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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