Restless Legs Syndrome (RLS) Discussion Board

Wednesday, September 18

Welcome to

Needacure, who has had RLS since childhood and is looking for more support.

Please just post a message and let us know what type of support that we can provide or help you find.

Wednesday, January 18 Welcome to edo00, who has had RLS since early childhood. It's gotten worse over time, especially after things like infections, a head injury, and chemotherapy. She is experienced worsening of symptoms again last year and feel the need for support from people who understand. Tha...

Tuesday, September 17 Welcome to anatbat, who has had RLS off and on for years and did figure out the link to iron in 2019 but over the last year it has become awful. Thankfully, the Foundation has a wonderful list of physicians and anatbat has been able to use telehealth to get a handle on the symp...

The normal list of prescription sleep aids (Sonata, Lunesta, Ambien, Belsomra) are generally not effective for treating the insomnia that comes as part of RLS. Gabapentin and Lyrica are generally the most effective meds. The problem with gabapentin is that many people cannot adsorb enough for it to ...

Monday, September 16 Welcome to NurseKatherine, who has been dealing with RLS for 10 years, and has had it treated for 8 years. She is 43 years old and is hoping to garner more information about successful treatments that are safe long term. She has gone through 4 different doctors and 3 medications...

Thursday, September 12 Welcome to ChristineS, who feels like I have tried every medication available. She even tried Methadone, but that made her so nauseous, She could barely function. So she is back on Oxy. Dr Earley has said that all meds have side effects but that each tends to be different and ...

Wednesday, September 11 Welcome to ADP, who has had RLS for 42 years. ADP was initially treated at Hospital for "anxiety " before finally being diagnosed. ADP is currently treated with low dose narcotics and getting then every month, trying to schedule vacation around Rx, and always having then with...

Tuesday, September 10 Welcome to mitchk, who has suffered from RLS for years. mitchk has tried just about every treatment. Many new members say that they have tired about every treatment because their doctor tells them that they don't have further suggestions. However, often that just means that the...

I hope that you start to do better very soon. Generally, the worst time when tapering off of a DA is the last step. The other thing to consider is whether your methadone dose is enough at this point. I started out at 5mg with instructions to go to 10 (which apparently is the normal recommendation). ...

Saturday, September 7 Welcome to kdelcamp, who has experienced RLS for about 20 years, but in the past month it’s become unbearable. kdelcamp wants to connect with people who have also experienced this. Unfortunately, RLS becomes worse with age. However, it can also get worse if you are starting to ...

Because the two drugs are similar in the way that they work, you could probably just switch meds without too much trouble. However, there are a couple of differences. The first is that gabapentin is cheaper than pregabalin. The second is that gabapentin can have a slight problem for some in that it ...

Saturday, September 7 Welcome to Lisbeth, whose RLS has recently gotten much worse although she has suffered from RLS for many years. It often disturbs her sleep. There are two possible explanations. The first is the RLS tends to become more severe with age. However, if you have been taking a dopami...

Friday, September 6 Welcome to IreneT, whose RLS causes physical and emotional distress daily, making it difficult to participate in individual or group activities, especially in the late afternoon and evenings. Also, makes it impossible to sleep without medication. If you have any questions that yo...

You didn't mention what dose of pramipexole you were taking, so I cannot be too specific with suggestions beyond telling you of my experience getting off of pramipexole with methadone. I was also taking 900mg gabapentin then (and continue to take that dose today). I was taking between 0.75mg and 1mg...

If you are reacting to one of the second generation anti-histamines, there is a good chance that you will react to all three of them. They are not supposed to cross into the brain, but apparently they do for you. If you cannot take anti-histamines, your next best option is to use one of the topical ...