Restless Leg Syndrome

@barbarn - not a stupid question at all . . . it's one I would have asked too. Actually in with the box of patches, the company has included a picture/outline of the human form: front, back, and side views, complete with shadowed areas where the patches can be placed. They are to be rotated every day, and there is a total of about 16 different points where they can be put. I write a number on the area where i am placing a patch that night so I can keep track, otherwise I would forget. It makes it much easier to remember and manage. I hope that makes sense - I don't think I explained it every well.

@babarn - again, you're right about the piriformis muscle. That has given me fits in the past, and it still does. Actually I'm having an injection to try to determine if the primary residual pain I'm still having after lumbar surgery is more in the hip or the piriformis muscle. That pesky area, when inflamed, takes forever to settle down again it seems. I used to do yoga and loved it since it helped me stay flexible and some of the poses did stretch out that muscle. However the lumbar surgery has made my spine rigid enough due to the hardware there that I can no longer twist. My physical therapist gave me exercises to strength the muscles around that area, and I think it helps. Sometimes sitting on a too-soft chair will make it start to ache ("it" being the hip or the piriformis, I'm not sure which) and those effects can hang around for several days. The Sleep Center doctor also said any pain or trauma below the waist can make RLS more intense.

@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.

@degarden_girl: Thanks again for this info -- the last couple of nights I've started having some breakthrough symptoms even though I'm still using 3 mg of Neupro per night. So far, I've only been taking it about 2 1/2 months -- darn! Tonight - I'll add more Vit D.

@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!

I got the same thing but I have asthma and taking NUCALA shots every thirty days but also I have a lower disk that is worn out on one side and it pinches my nerve too plus other problems I just cannot get used to my BIPAP at all and that does not help matters

I find that caffeine and sugar both greatly exacerbate my RLS, so avoid both whenever I can. Does anyone else have any foods that worsen symptoms?

I've also found that sometimes (but not always so maybe there is no direct correlation) too much sugar, too much salt, or both can make it difficult to fall asleep and can make symptoms more pronounced.

@suecreader For me when I don't have enough Potassium I get RLS

@lioness - I do take a multi-vitamin and that has some potassium in it. Do you take one too and then add a potassium supplement? How do you know you're low or do you just know by how you feel? I'm taking extra Vitamin D tonight as @barbarn suggested.