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Pretty sure it is RLS

Brain & Nervous System | Last Active: Mar 7, 2023 | Replies (25)

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@patriciajean

Hi, @ccstahl, sorry to hear about your issues!

I started having RLS symptoms (along with other symptoms) in 2019 and it was like torture! After about 18 months of testing and trying different meds my resting tremor had progressed significantly so my neurologist started me on Sinemet and my muscles relaxed within 1/2 hour. No more RLS. It was such a relief! I could sleep again. Prior to that I could only sleep by taking Pregabalin and muscle relaxers and still I woke up frequently.

Unfortunately, over the next year, the wearing off period brought back the RLS. I was given a sample of the Neupro patch and it works 24/7. I haven't had RLS symptoms for the past 6 months. Unfortunately, Neupro is prohibitively expensive but if your insurance doesn't cover (I think it's Tier 4) and if you're in a lower income bracket, you may be able to get help to pay for it. I have not noticed any side effects but I think it's a lower dosage (2 mg) and I have been taking it only every other day rather than every day as the effects last long enough for me. But I do exercise a lot and am pretty fatigued by the end of the day so that, in addition to the meds, helps me sleep.

I did experience RLS I think about 8 years ago and tried magnesium and it helped for awhile, so if you haven't tried taking magnesium you might give it a go. I've read that magnesium glycinate is the best-absorbed form of magnesium. But if that doesn't work and you're not opposed to it you could ask your doctor if Sinement or Rotigotine is an option, at the lowest dose.

Take care and good luck!

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Replies to "Hi, @ccstahl, sorry to hear about your issues! I started having RLS symptoms (along with other..."

That is all good information thank you! This is all so new to me I am still scrambling to find information. Six months ago I felt walked and ran did lots of cardio at gym and had no pain. Literally woke up one morning at 4am with sore calves and just got progressively worse the last 5+ months. Working with my doc to get some answers and see if we can get this under control. Will to try most anything at this point