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I would like a scientists opinion on my way of fighting my rls/ras

It all started when I began to have rls around 18, then this developed into ras (restless arms). I've tried everything. I even considered breaking the skin over the affected area to distract my brain. But after quickly realizing that wasn't a viable option, I started to dig. I've been taking Ropinirole (dopamine agonist) which I suppose helped at first, but quickly resulted in many nights of no sleep with worsened symptoms. Which led me to discover there isn't enough melatonin in the world to overpower the stimulating sensation of rls/ras.
Okay, now I know this is going to sound crazy, but I was pretty desperate and I believe this might help someone else like it helped me. Charcoal and peppermint extract toothpaste.... just a small 1"×1" square over the affected area and I noticed immediate relief. Now I know it isn't a permanent solution and doesn't COMPLETELY get rid of symptoms, but it made them manageable. I don't know the science behind it, but I think with such a lack of research surrounding these syndromes would warrant some scientists to at least look into why the charcoal and lavender toothpaste (It sounds crazy, I know) relieved my symptoms... feel free to reach out.

  1. I've had RLS since a young age. It has changed over the years. Now it's mostly in my right leg just above the knee. I could never take any sleeping meds or even melatonin because it makes it worse. Same for the drugs that they prescribe for Parkinsons. I've been on Klonipin and Gabapentin for years with some relief. Lately it has become more often than it used to be. I found out a few years ago that antihistamines made it worse. Recently I weaned myself off the Gabapentin because of a toothache and started taking tramadol with the Klonipin and it was working better and relaxing my body. I don't have any pain with my RLS, just the crawling feeling. My doctor said it was ok to take the tramadol if it was working. I have cut down the Klonipin in half hoping to get off of it also. I think after being on Klonipin and Gabapentin for years, it has stopped working for me, or I've changed.

    1. Hi . That crawling sensation can be maddening. I am glad you found something that helps. It is possible that your nervous system became accustomed to the medications, so I am glad you were open to trying something new. Klonipin can cause unwanted side effects if you taper too fast, so take your time if you are in no hurry to get off it. Wishing you the best. - Lori (Team Member)

  2. I have had RLS for years. Home remedies do not work. Most doctors are clueless. I had to go to several Dr's. Finally found one willing to seriously help. Found a drug combination.prescribed. the only thing that will help is an extremely hot bath. But only if medication does not take it all away. This condition is no joke do not listen to people when they suggest vitamins and otc drugs. These may srt it off even worse. I had 3 car accidents due to my lack of sleep because of RLS. If your Dr is unwilling to seriously stop ot, find another doctor. The combination of drugs is different but my RLS is very severe. I need sleep

    1. Hi . Those accidents must have been scary. I am glad you are still here to tell us about them. I think 's discovery is a bit like your hot bath. It doesn't bring complete relief, but it is something that eases symptoms in the worst of times. I hope your medications are helping and that you are finally getting some sleep. Thanks for chiming in. Best wishes. - Lori (Team Member)

    2. Can you share the combo of drugs that you are taking. My husband has it severely as well. He takes approx. 1800mg of Gabapentin per day. It used to come and go but for last year, he has been dealing with it daily. He gets some relief during the day but sometimes it just bothers him all day long! So sorry you are dealing with this too.

  3. I started using AcuPlus roll-on to treat my arthritis. I soon discovered that it helped my RLS. The active ingredient is menthol, which makes me wonder if the mint in the toothpaste is having a similar effect. Being that RLS is a neurological disorder, I found it strange that something “numbing” helped, but it has consistently. Not 100% at all, but if I catch it before it gets out of control, I at least have a chance at sleep. And I’m on the highest dose of every prescription drug for RLS and have suffered acutely for 43 years with it.

    1. How awesome that you found something that helps, . That is an interesting theory about menthol. You might be right. Thanks for chiming in. Wishing you the best. - Lori (Team Member)

  4. melatonin makes rls and ras worse! I have both as well and it is absolutely miserable! There really does need to be more research done as I have tried just about everything that I have found that is supposed to help! I have not tried the toothpaste you mentioned though so that is very interesting!

    1. Glad I read this. Just stumbled upon this site. I had considered melatonin. Also considering Mg Glycinate supplements. Definitely it use the melatonin.

    2. Hi . Welcome to the community! Some in our Insomnia community just posted about the success she has had with Glycine, but I had heard good things about magnesium Glycinate. It is always best to talk with your doctor before taking a supplement, of course, especially since it is possible to overdose on magnesium. I hope you find something that helps. Please feel free to reach out if you need any help as you navigate the community. Best wishes. - Lori (Team Member)

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