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Sat, Jan 12 12:29pm · Restless Leg Syndrome in Sleep Health

@suecreader I do hope you have some success with the D. I'm finding the effectiveness of the D hasn't worn out so maybe you just want to up your D to the 4 or 5,000 IU range and see if you have some wonderful results. Don't hold back, you have nothing to lose but your RLS!

Sat, Jan 12 11:46am · Restless Leg Syndrome in Sleep Health

@susan2018 I don't know if higher doses of Vit D3 will work for everyone with RLS, but it is such a benign supplement it seems worth a try. It seems to be recognized that up to 5000 IU is perfectly safe. I know people take much more than that but since it is not a water soluble vitamin and thus the excess is not excreted, it is best to first try the lower doses. If you are on medication and get break-through RLS, try the D3 in addition to your medication, and if it helps, you know you are on the right track.

One of my sisters had RLS and also had a low Vit D on a blood test so her MD had her get an injection. The RLS stopped and she mentioned it to the PA when she had a return visit and the PA told her it was because of the Vit D. So, now she takes 1000 IU each night and RLS has not returned. So, I too have RLS and started taking 1000 IUs of Vit D. It didn't do the trick so I began to increase the dose by 500 IUs a night. I got to 4000 IUs and that took care of it and has done so for a number of years now. And then another sister developed RLS and she went right to the 4000 IU and that took care of it. Our mother had severe RLS which would keep her pacing all night. She ended up on Gabapentin and another script which was a great help. I wish I had known about the Vit D back then as it certainly would have been worth trying.

Just as an aside, my Vit D was in the normal range both before and after I began taking the higher dose of D.

There is so much that medical science doesn't know about so many situations and very few MD's look at anecdotal reports and instead go to the medications recommended by the drug companies. Maybe Vit D won't help but maybe it will and what a benign resolution to this horrible syndrome. If my RLS returns, I will up the Vit D, but will discuss with my MD before exceeding the 5000 IU recognized safe limit. I know some people take 4 X that without adverse effects but I would want my MD checking my blood for a build up. I found the kind of rubbery capsules to be a better choice for me as I guess they might dissolve more quickly.

I wish you good luck in your search for relief from this horrible syndrome.

Thu, Jan 10 8:01am · Restless Leg Syndrome in Sleep Health

@suscros68 @susan2018 @suecreader What a wonderful group of people on this discussion. I am learning so much about how other "chemicals" (caffeine, alcohol) affect the RLS. Thank you all for sharing your RLS struggles. Right now the Vit D3 has totally controlled the RLS but yes, this seems to be an age related issue and I expect as time goes on, the D3 might not do the job and I will have to move to "real drugs" to control it. Years ago (2010) I was put on Requip and other drugs usually prescribed for Parkinson's disease and those drugs made me so ill that I preferred the RLS! And that says a lot! But it looks like there are new meds now available that weren't available then.

BTW, I have found if I don't want to have wine with dinner, I enjoy tonic with a squeeze of lime in a pretty stemmed glass. It seems to fill the "something to sip on" desire.

Good luck to all of you ladies. You certainly have gone through a lot and I am learning from your experiences. I hope you find the perfect resolution that works for you to control RLS. It is a horrible syndrome.

Dec 31, 2018 · Restless Leg Syndrome in Sleep Health

@julchilds I think the 5000 mg per day is the recognized totally safe amount to take per day. I know there are people who take 20,000 mgs per day without side effects but I don't recommend that without medical supervision. And if I need to up my dosage, I will simply get monitored while increasing it to assure I'm not going over the safe edge. And I tried tablets and found them not as effective as those kind of rubbery capsules.

Dec 31, 2018 · Restless Leg Syndrome in Sleep Health

@julchilds @suecreader I have not tried R-ALA and from my very brief internet review, it seems to be an antioxidant. However, since there is some indication it helps with peripheral neuropathy, I wouldn't dismiss this out of hand. But, and this is a big BUT, there are some serious possible side effects from taking this supplement. My approach has always been to proceed with the least invasive or harmful approach and always proceed with caution. Since R-ALA is a "supplement", it isn't medically vetted by the FDA. Julchilds, I am so happy that you are experiencing some relief from RLS with VitD3. Tell your MD as possibly your experience will be used to help others.

As to whether RLS always gets worse??? I have found it is totally controlled with VitD3 and if it does get worse, I will try increasing the D3 before trying something else. I have been dealing with this for 8 or 10 years and it is controlled by D3 without getting worse or needing more D3.

Dec 31, 2018 · Restless Leg Syndrome in Sleep Health

@suecreader I think the MDs tend to look at drug company information and the drug companies don't make any money on Vit D.

Taking the vitamin D3 worked immediately once I found the right dose. In fact for anyone thinking of trying the D, I suggest starting at 5000 IU or MG capsules, (I can't remember how those capsules are measured) and if it works, you know you have found the missing link. If it doesn't work, you will know this is not the missing link for you. And if the 5000 works, the next night take just 4000 and see if that works. If yes, take 3000 the next night. You can always add more if you reach the point where it isn't working but it worked before. And if you want to try a higher dose, I think it is probably wise to check with and have it monitored by your MD as Vit D is not a water based vitamin and excessive amounts are not excreted.

Just as an aside, I did NOT have low Vit D before I added all of this and I don't have high Vit D now so I don't understand how the body is using it but it does work for me.

I tried iron tablets and also added red meat to my diet. That didn't help me at all.

Good luck to all you RLS sufferers and may 2019 bring a cure without any side effects.

Dec 31, 2018 · Restless Leg Syndrome in Sleep Health

@suecreader Hmmm, interesting as I was told I had "growing pains" when I was young. And Sue, I think your RLS is far worse than mine. My Mom had RLS and her symptoms were far worse than mine or what any of my sisters are experiencing (but we all started on the higher doses of Vit D when the RLS presented its ugly head). I am 74 and the actual RLS thing probably started about 8 to 10 years ago and the PILM more recently. The PILM isn't a problem if I don't take Benedryl or the PM drugs or more than a nibble of Ambien. Interestingly, I also have some "restless finger syndrome" in which one finger will start to move or maybe that is part of the PILM symptoms. The finger movement is just kind of interesting, not a sleep problem but I am sure it is connected.

I hope the Neupro continues to work for you and that the side effects become minimal. I think as more and more people speak up about their experiences with RLS, medical science will find a cure. But for so long, it has been minimized as unimportant. I remember three male friends laughing about restless legs and I want to tell you, I educated them on the seriousness of the condition. They were laughing at the name as it certainly doesn't convey how unpleasant and life altering the condition is to those of us who have it.

Dec 31, 2018 · Restless Leg Syndrome in Sleep Health

@suecreader @lynnkay1956 Benedryl and drugs containing that chemical such as the PM drugs absolutely get my legs kicking and feet flapping. I understand this is Periodic Involuntary Limb Movement (PILM) which is connected to RLS but it is definitely different and very weird.