Restless Legs Syndrome (RLS) Discussion Board

Welcome this New Year's Day to

RLSBLues, a severe chronic life-long suffer of RLS who is seeking relief, experiences side effects with ALL prescribed meds. Opiates are recommended but not started due to serious reservations. Blues is therefore interested in alternatives.

For treatments without prescribed meds, take a look through the Non-Prescription and Physical Treatment forums. You should also take a look at some of the recent discussions on opiates in the Prescription forum since your reservations are shared by others have have been discussed by those currently on opiate therapy.

And to

Lizette, who is taking Requip but whose condition dominate her life. The is the medicine itself either causes nausea or makes her sleepy/groggy so night life, such as it was, is non-existent. She is also scheduled for a total knee replacement and apprehensive about how that will affect the RLS.

Please take a look through the discussion threads to see how others manage to cope with their treatments. Also, please do searches on Surgery and Knee Replacements since both have been active topics recently and will help you understand what needs to be done to manage the surgery and recovery.

Both of you should also feel free to post any questions or comments if you do not find exactly what you are looking for.

Welcome to Lizette, who takes Requip which nauseates or makes groggy, ruining any potential for life in the evenings. Also a knee replacement surgery is coming up and that causes worry too.

Lizette, we encourage you to start a new Topic (either in this Forum, or in another if that seems more appropriate) and tell us more about your problems. There are lots of people here who have had issues with Requip. (This Topic is locked and is used to welcome new members only).

Have you read about augmentation? In short, it's a worsening of the WED/RLS disease caused by Requip/ropinirole, Mirapex/pramipexole, Neupro/rotigotine, Sinemet/levo-carbidopa, or another medication of the dopamine agonist or dopaminergic classes. The links below my name, at the bottom of every post I make, take you to a brochure about augmentation (top link - explains what augmentation is) and a number of scientific papers about iron and augmentation (bottom link). Rustsmith, another of the moderators, has a link in his signature line as well, which gives a number of criteria that together can help you decide if you have augmentation. It is probably essential, if you haven't already, to find out what augmentation is, in order to keep an eye out for it or possibly determine if you already have it.

The currently recommended maximum dose of Requip for WED/RLSers much lower than the FDA-approved max - specialists are now saying that 1 mg is probably the most anyone should take for WED, because augmentation increases with dose. It also increases with lowered ferritin, which is a protein that stores iron. If blood (serum) levels of this protein are low (below 100 micrograms/litre), you should supplement with iron (barring any other conditions, that is, so you would have to check with your doctor first). Iron plays a huge role in RLS/WED, and getting your serum ferritin checked is very important.

As for surgery, the WED Foundation publishes a brochure on having surgery with WED: Surgery and RLS/WED (Healthcare Provider Series) -Special Considerations for the Surgical Team when the patient has Restless Legs Syndrome . It is very useful since many of the substances that go in an IV during an operation can exacerbate WED; if the anesthesiologist knows which, s/he can avoid them and use other things instead. Be sure to bring 4 or 5 copies of the brochure and checklist with you - you can print them or get someone else to print them. They're PDF documents, and will be worth every penny if you have to pay for them to be printed. (PS I am trying to find the checklist, I will edit this when I do).

Give a copy to your surgeon next time you see him or her. When you meet the anesthesiologist, give a copy to him or her. When you meet the recovery room nurse, give a copy to him or her. A person here even recommended that you place a copy on your chest as they wheel you into the operating room!

I was getting a ligament reconstruction in my knee. I highlighted parts of the brochure, and I went over WED and the list of substances to avoid with each person I met - primarily the surgeon and anesthesiologist. They were all very interested, and took it to heart, and were very careful not to give me anything that might harm, so I had a wonderful experience (as such things go).

Welcome to

VeganGal, whose RLS/WED has taken over her life, every day and every night.

Take a look through the various discussion threads here on the board to get an idea of how others manage to cope. Please feel free to post any questions or comments.

This must be the day of learning about WED - we have another new member on the 1st,

Fallenarches, who has WED that has made life difficult for the last few years. Fallenarches is looking for support and for suggestions to help cope.

That's why we are here! Poke around, read some posts - take the link in my signature for a starting place. When you are ready, post, ask questions, and join in the conversations.

And yet two more new members to welcome on New Year's Day.

Welcome to

seckers, who is afraid to do things that require sitting for a long time and is I am miserable when an attack hits.

and

Rosietoes#1, who has suffered lack of sleep, loss of ability to concentrate on reading or watching theater performances, and lack of understanding from my partner.

Both of you have come to the place where everyone knows exactly how you feel. Take a look around and learn what you can. If you have any questions or comments, please feel free to post them.

Welcome to BeeStill; a recent sleep study showed WED but fortunately doesn't bother much unless certain medications are taken.

Do let us know more. Sleep studied usually show PLMS - periodic limb movements in sleep. RLS happens when a person is awake. You may have both. We're happy to help you in any way we can.

Welcome today to anniei12, who has had WED/RLS sporadically since childhood. It has gotten worse since beginning Humira for Ankylosing Spondylitis, and last night was the worst ever.

Anniei12, so sorry you had to be here, but I'm sure you'll find the site helpful. I have not head of Humira (an engineered analgesic and anti-inflammatory) affecting WED/RLS, how depressing that this is happening! But lots of medications have adverse effects on WED. Please start a new Topic and tell your story, or just ask your most pressing questions; maybe someone else here has experienced the same thing.

Sunday, January 4

Welcome to

SYLVANIA39, who is currently on Requip and wants to learn non-medical methods to mitigate my symptoms.

Take a look at the Non-Prescription and Physical Treatments sections to get some ideas about what has worked for others and what has not. If you don't find what you are looking for, please post a new message with any questions.

Monday, January 5, 2015

Welcome to jmg416, whose RLS/WED has gotten much worse lately and would like more information about treatment options.

5, January

Welcome to EdSoFlo, who has WED and used to see a wonderful doc in Southern California, but now lives in Florida and hasn't been so lucky. EdSoFlo wants to both connect with others who understand and maybe find a better doctor.

We will support you all we can, EdSoFlo. The doctor part could be a bit harder. But, do look in the General Topics area - there is a long thread with many docs listed. You may find one. If you do not, we can share what we've done when none were to be found.

Tuesday, January 6

Welcome today to

ltreviranus, who I has had WED for over 35 years (I'm 64) and is gradually progressing. WED also runs in the family with a younger sister and daughters also experiencing it.

Take a look around and see if you can find the information that you seek. Also feel free to post any questions or comments or simply a note to introduce yourself.

Also on 6, January, welcome to:

gracelynch, who's symptoms are bothersome day and night and is making life intolerable.

We hear you! Many of us feel the same. Post and introduce yourself, let us know what you've tried. Or take a look around and read. A great starting place is the link in my signature.

On 7 January, 2015 - welcome to

steven.hronec, who is augmenting on ropinerole - was up to 6 mg daily. Was just given Neupro and hopes it works better.

svenbuss, who has suffered from this disease and is miserable.

Please look around the board, post about your experiences, and let us know how we can help. steven.hronec, you may want to read what you can about augmentation. It may help you as there are many posts about augmentation.

Thursday, January 8

Welcome to

heart, who has rls, plmd, apnea and potentially rgi and needs someone to talk to who understands because her doctor doesn't.

That is why were are hear. Take a look around for information and then feel free to post a note introducing yourself. Ask any questions and feel free to simply gripe. We all understand.

Friday, January 9

Welcome to

delaney29, who has a rather severe case of RLS and who may be augmenting. He also has great difficulty with sleep. And
sandum49, who has been taking Requip for 9 years, has had to increase my dosage repeatedly due to increased WED symptoms and will run out of Requip before she can refill the prescription. She is therefore looking for any tips I can find for Requip withdrawal coping mechanisms.

Many of us here can relate to your situations. Take a look around for information that may be useful to you. In particular, take a look at the information on augmentation in my signature as well as that of badnights. If you cannot find exactly what you are looking for, feel free to post a question.