Restless Leg Syndrome

Thank you so much for taking the time to post this encouraging reply. It certainly does help to hear about your experiences, and I especially appreciated the story about the three people laughing at the diagnosis of restless legs. I’ve had that happen too, just as I have with the diagnosis of fibromyalgia. So many people, and ones who I would think have enough knowledge to not react this way have made statements indicating that they think this is a made-up condition or diagnosis. I’m glad you set those people straight and educated them. When suffering from lack of sleep it’s sometimes difficult to not be frustrated at lack of understanding of others. I was also interested to hear about your mom also having restless legs as well as you and your sisters. I am an only child, and I believe my father had them also, but there was no firm diagnosis of RLS years ago. He passed away from a heart condition when I was 28 so I’ve been inable to ask him questions about his symptoms. Ultimately though what matters is what works for us to get relief. You’re the second or third person who have mentioned vitamin D, and I am glad of the reminder so that I will ask my doctor about that also. The iron connection & taking more iron hasn’t seemed to give me much relief....interesting that she (the doctor) hasn’t suggested Vitamin D.

@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.

I just wanted to say that I have tried vit D, 5000 mg, at night when the torture starts, and it has been working! My concern is about overdoing the dosage, but I like your idea of scaling back. Do you have experience with R-ALA? Some people here are saying it is also helpful. I am wondering if this syndrome always progresses. That is a depressing thought.

@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.

@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.

I tried Neupro which is a transdermal patch. It does have some side effects like headaches, dizziness, and some nausea, symptoms that became milder after 1-2 weeks. It’s a rather expensive drug, even with insurance, but I’ve slept all night long more nights than not for the first time in 10 years. I was only getting 1 - 2 hours of sleep per night. Again, everyone is different, but it’s worth a try. I was at the point where I would do anything to get some sleep. I wasn’t able to drive since I would drop to sleep involuntarily, and I was unable to stay the night away from home at all Since I would need to walk almost all night long, and sometimes I even would run through the house, as crazy as it sounds, to try to get rid of the symptoms since they intensified through the night