Restless Legs Syndrome (RLS) Discussion Board

Thursday, November 1

Welcome to

paigey118, who is a female, with diabetes and peripheral neuropathy - multiple medications - developed RLS about 2 years ago but just diagnosed about 6 months ago officially. It is the most frustrating and annoying condition because it affects her sleep and any type of attempted relaxation. She is frustrated.

Please post a note telling us how your doctor is treating your RLS (and peripheral neuropathy) so that we can make some suggestions of things to discuss with your doctor that might improve your situation.

Friday, November 2

Welcome to

Luroseb, who has suffered from RLS for 20 yrs. and is now 85. Recently Luroseb had bad augmentation but it is better now but RLS is still and every day and every night affair.

Please post a note telling us what you did to reduce your augmentation and how you are managing your RLS now. And feel free to ask any questions that you have.

Friday, November 2

Welcome to

HeuJude, who has had RLS for about 20 years. When Mirapex was introduced to her about 12 years ago it felt a miracle had occurred but now augmentation has begun and she is once again pretty miserable. She was taking a combination of gabapentin and mirapex which made her sleepy ALL the time so she has cut the gabapentin out and is just using mirapex with some success, but not totally. She has a prescription for extended release Pramipexole (mirapex) (1.5 mg) that she will try after her current supply of mirapex is gone. The new prescription is over $100 a month, but if it works she will be willing to pay any amount. One tablet a day sounds grand.

Please be aware that most of the RLS experts now recommend that the max daily dose of Mirapex should be 0.25 to 0.5mg. If what you were experiencing was augmentation, which seems likely, increasing the dose and switching to Mirapex ER is only likely to work for a short time. Please take a look through our forum on augmentation and PLEASE post a note telling us about how much mirapex you are currently taking so that we can offer you some specific suggestions (which might include finding a new doctor or educating your current one).

Saturday, November 3

Welcome to

PlantMan, who was recently diagnosed with RLS when he went to a sleep lab for sleep apnea. He had never hear of it, and so now would like to find out more information regarding the disease.

We are sorry that you had to find us, but happy that you did. Please post a note telling us a bit about your symptoms and asking any questions that you have.

Saturday, November 3

Welcome to

Yakester, who besides the obvious lack of sleep she has had severe reactions to going off of pramipexole. This happened twice in exactly the same way. Seven years ago she was abruptly taken off pramipexole when in the hospital after a car accident (sudden onset of extreme sleepiness.). She suffered from extreme profound depression, which ended up with leaving her marriage. This year she had to again stop pramipexole and suffered the same depression. Ended up leaving another relationship. She understands there dopamine agonist withdrawal syndrome and feels very strongly that this is what happened.

Please tell us what you are now doing for your RLS as well as a bit about the dose of pramipexole that you were using before your two bouts with depression so that we can help answer some of the questions that you appear to have.

Saturday, November 3

Welcome to

KathyT, for whom RLS has been part of her life for 25 years. As she gets older it has become more of a challenge to stay positive as sleep problems become more intense. Staying informed and educating herself is part of my treatment!

You have come to the right place for information and education about RLS. Please post a note telling us what you are doing to manage your RLS and asking any questions that you have.

Saturday, November 3

Welcome to

Frembot, who is an RLS sufferer and is hoping to learn more.

This is the place to learn about RLS. Please post a note telling us a bit about your RLS and treatment and asking any questions that you have.

Saturday, November 3

Welcome to

donna613, who has had RLS since she was a teenager. It has come and gone throughout the years but she still suffers at times, especially when she is on a long airplane flight. Her legs tend to feel trapped and they want to run away. Her grandmother and mother suffered from it - it was terrible - no sleep. Today, one of her sisters is incapacitated with RLS. She also has neuropathy which requires that she rests her legs. She can do this until the RLS sets in and she has to get up. Right now she is looking at medical marijuana to help. Her son also has RLS.

Unfortunately, RLS had a genetic component to it, which you already know. Please post a note telling us about the various approaches that your family is using to manage their RLS. We can probably offer some suggestions for improvement.

Monday, November 5

Welcome to

bdolin8900, who has had RLS for many years and has tried everything to cure it to no avail. bdolin8900 is also a member of the Foundation, which has been fantastic, but is having a hard time finding a Dr. in Naples Fl. that specializes in RLS.

Please post a note telling us a bit about your RLS and the treatments that you have tried so that we can offer some other ideas. We cannot help with finding a doctor in Naples, but can offer more ideas on how to proceed to find one.

Tuesday, November 6

Welcome to

Sylvio, whose RLS has developed over the last 15 years to a scary point where it moved from legs to lower body. In the UK, Sylvio took Codeine over the counter but now in the US and it only is by prescription. Sylvio needs an alternative since it again is getting bad. Married life is uneasy.

You need to talk with a doctor in order to get treatment for your RLS. Medications that are available over the counter in the US are not going to help. Try to find a neurologist who specializes in either movement disorders or sleep medicine because these are the most likely to understand the proper way to treat RLS. A specialist is likely recommend first trying gabapentin, Horizant or Lyrica, which are similar to each other. Dopamine agonists, such as pramipexole (Mirapex), ropinirole (Requip) or rotigatine (Neupro patch) should be a second choice since the side effects can be a problem. Opioids such as codeine are only available once you have failed both of these classes of medications, but fortunately, they almost always work.

Wednesday, November 7

Welcome to

loisbelo22, whose RLS started 42 years ago with her first pregnancy. Loss of sleep left her with a thyroid infection and subsequent chronic fatigue syndrome - taking years to dig out from. Various Rx regimens have come and gone and still, good sleep eludes her. She now has to pull her life circle tighter to lower stimulation/data load to her mind in an effort to stop the slippery slope of hazardous sleep loss from insomnia.

Please post a note telling us about your current Rx regime, we may be able to offer some suggestions to improve your RLS and insomnia.

Friday, November 9

Welcome to

Pianogirl60, who has RLS and wants to know about others who suffer with the same disorder. She is trying to find a new medication or ideas about this disease. Being in this community can help, her cope with everyday life with RLS.

Please post a note telling us about your RLS and the medications that you have tried so that we can offer you some suggestions to consider. We are also here to help you cope.

Friday, November 9

Welcome to

Tank, who has had RLS for approximately 20 years. It gets worse with each passing year. Medication helps him sleep at night; but he experiences symptoms throughout the day unless he's up and moving. His anti-depressant exacerbates his RLS symptoms.

Please post a note telling us about your current medication since it could be contributing to your daytime symptoms. Anti-depressants are also known to aggravate RLS. You might want to ask you doctor if you can try Wellbutrin since it is the only antidepressant that often does not cause problems.

Friday, November 9

Welcome to

larbian, who has been suffering with RLS for 10+ years.

Please post a note telling us a bit about your RLS, what you do to manage it and asking any questions that you have.

Saturday, November 10

Welcome to

Catalina36, who has suffered from RLS for 30 years. It has adversely affected her ability to be promoted in her job, her ability to socialize and her ability to travel. It is affecting her health in other ways including dealing with significant heart and back problems. Finding adequate medical support has been difficult and frustrating.

Please post a note telling us about your current physician's ability to treat RLS, your current treatment and asking any questions that you have.