NeuroTalk Support Groups

Quote:

Originally Posted by Kitty (Post 999893)

I take Baclofen every night before bed. My legs don't really give me much of a problem until around 6 PM. And they get increasingly restless until I go to bed. I have to take my first Baclofen around 6 PM and then every 4 hours or so afterwards.....if I want to get any sleep at all. :rolleyes:

Tough question because it's such a complex disease.

First, for those who think RLS isn't a great name, good news! it's been changed. Of course, it will take years for it to permeate through all medical communities, but the new name is Wills-Ekbom disease. The International Restless Legs Society decided to recommend the name change for many reasons, including that it isn't only in our legs and that the name carried negative connotations, particularly in the US.

But, back to the question....have you ever had your serum ferritin tested or your hemoglobin? New research is clear - people with WED should have their serum ferritin as high as possible - a minimum of 100 is recommended. Your doctors likely are still unaware of this. If you know your hemoglobin levels have been low, you must take iron. In some cases, increasing iron will reduce or even stop symptoms.

As to magnesium, Vitamin D, vitamin B (all), and other vitamins and minerals. When deficient, any of these can contribute to worsened WED. It doesn't hurt to try them. Magnesium never helped me, but vitamin D did.

Because there are so many things that can contribute to WED, it's really helpful to join the WED Foundation - or at least check out their website. They have many articles and brochures that you can use to educate yourself and your doctor.

Other drugs can worsen symptoms. Anti nausea drugs, some anti depressants, anything with Benedryl, or any anti-psychotics can be problematic. So, if you have to take one so these, you can try switching to another or you may have to use medication to treat the WED.

Lyrica, gabapentin and Horizant are often very helpful if you need medication. The longer the dopamine agonists are used (ropinerole, pramipexole, Sinemet, or the new rotigotine), the more doctors realize some of the side effects they have that are very disturbing.

To me, the most important thing when you have WED/RLS is to educate yourself. Much of the research in the field in less than ten years old, meaning that most doctors are unaware of it. The more you know, the better you can help yourself.