Restless Leg Syndrome

Hi, there - several of you were talking about things you were trying to relieve your restless legs syndrome (RLS). It would be great to hear how those are working for you and whether you are getting relief. I'm sure others in this discussion would benefit from your experiences.

@nightwalker - how is the iron supplement with the Vitamin C working for you? Have you found that the tonic water and heating pad are helping with your RLS?

@degarden_girl - you mentioned Vitamin D. Is that something you are using for your RLS? If so, has it made a difference for you?

@dolly715 - did you end up trying the tonic water and vitamin D? If so, how did that go?

@lisalucier The vitamin D at 4000 iu per evening totally controls my restless leg syndrome. It does not control Periodic Involuntary Limb Movement (PILM) which only "kicks in" literally, when I take Ambien to sleep. I can get away with about 1/4 to 1/3 of a 10 m tablet but more than that and my feet are flapping away or my legs kicking. Same effect with Benedryl. So I try to avoid these medications as much as possible and when necessary, take the lowest dose possible.

PILM is different than RLS. With RLS, there is a compulsion to move ones legs. With PILM, the legs just move independent of any sense of compulsion or that it is going to occur.

My mother had RLS and so far, three of her six daughters have developed it and all three of us find the vitamin D handles it. I wish I had known this when my mom was suffering so. It is a terrible condition with such a benign name.

@degarden_girl I find this fascinating, as I too, was diagnosed with RLS. But I don't just have the compulsion to move my legs, they DO move about all on their own, throughout my sleep. I also have sleep Apnea, but my machine is broken. So I must get another appointment with the sleep doctor. Interesting to hear about the Vitamin D. Interesting too, that many doctors don't want us to take supplements that we are actually deficient in. Good luck and let us hear back how you are getting along, won't you?

Mamacita

@mamacita My Vit D wasn't deficient before and is still very much within normal range so not at all sure why the Vit D controls RLS. Both RLS and PILM complicate the whole sleep thing. From what I understand, RLS occurs when we are just falling asleep. I wonder if your sleep Apnea has you "falling asleep" frequently through the night, especially now that your machine is broken. You might try the Vit D and see if that helps calm your legs. It certainly was an easy solution for me. I had MDs prescribing medications usually used for Parkinson's disease and they made me so sick.

I have run the gamut of medications for restless leg syndrome (RLS) over the past 25 years, and most of them worked for a period of time and then stopped working or 'rebounded' and created increased symptoms of RLS after a period of time. As I age, my restless leg severity increases exponentially also. I also have fibromyalgia and chronic fatigue (diagnosed by Fibromyalgia Department at Mayo) so when I don't get enough sleep, those issues, along with a back that has had cervical and lumbar surgeries, flare up and are more painful also. Requip worked for about nine years, and then I needed to increase dosage: at first every two-three months, and then it was every two weeks. Each time, I experienced nausea/vomiting, dizziness and sometimes fainting, and a severe headache the next morning. I have been seeing a Sleep Center doctor at Mayo, and she is great, but we have been struggling to find something that works more effectively than Gabapentin which creates issues with my memory . . . when I was taking a higher dose of 1200 mg daily, I was afraid I was developing dementia my thinking was so skewed. Lower doses, 600 mg work better. I recently asked about Neupro which I heard about from a friend who knew someone who had great success with it. However, it too has side effects; same as Requip with the nausea/vomiting, dizziness/fainting, and headache at first dose . . . . but memory issues are somewhat different. With Neupro, at numerous intervals during the day, it will feel like someone dropped a blank box in my brain, and when I try to recall something I know that I know, it just isn't there. It's been a month and a half of taking Neupro, and for a period of four years, I was getting 1 1/2 - 2 1/2 hours of sleep per night sometimes in 15-20 minute intervals with a 6-7 hour night every ten days to two weeks. Needless to say I was a walking zombie. I am wondering if anyone else is taking Neupro and what their experiences are?

Hi @suecreader you may have noticed that I moved your discussion on neupro and restless leg syndrome to this existing discussion on RLS that you have taken a part in.

Let's open this up to the group. @mamacita @degarden_girl @barbarn @ssbionicknee @nightwalker18 @gaylea1 have any of you tried this medication? Or have you explored taking it with your physician?

@suecreader Oh Sue, I am so very sorry for all you are going through with this awful syndrome. I too was on requip for a few months but went off it because I felt so ill.

Once I hit on Vit D and found it worked for me, I have not sought any other medications. It sounds like you are desperate for something that will help. I have absolutely no idea if Vit D will be helpful to you but it is a pretty benign medication and worth a try. I take 4000 IU at bedtime. I believe that up to 5000 IUs are considered totally safe and if you want to try more than that, you should probably talk to your MD about monitoring your Vit D.

Yes, RLS does seem to be a problem dumped on us older people. There must be something in our brain that begins to malfunction. I have wondered if hormone replacement therapy would ease RLS symptoms. This issue seems to strike women more than men.

I wish you success with Vit D. Wouldn't it be a wonderful miracle if it resolved your problem.

Thanks Ethan McConkey - I thought I was posting under that same discussion . . . sorry. I appreciate you noticing and correcting it.

@degarden_girl - your kind words of sympathy were so nice - thank you! I have not heard of high doses of Vitamin D as a therapy that would be effective against restless legs. I'll give that a try. As I said, sometimes I feel so desperate for sleep . . . . at the same time, I do want to make wise choices. Good advice to ask my regular MD who oversees general health issues how much Vit D is considered safe on a daily basis. Bet it felt like a miracle for you when you discovered that it worked for you. Yes, I believe I would feel like someone handed me a million dollars if I found something that would help me sleep and be 'normal' again. Not sleeping limits my activities since I'm afraid to drive very much since I drop to sleep involuntarily, and I don't stay travel or stay overnight with others since I never know what level of intensity my RLS will be.
As for the connection to the brain - I think you are right. When I tried the Relaxis pad, a representative from the company was checking in with me on a weekly basis and giving me different tips to try to get the pad to work for me. It is an FDA approved device, but it seemed to work in different positions and/or times of day for 2-3 hours, and then stopped working after two-three days. His company believes that RLS starts in the thalamus part of the brain, and during the day when the brain is active, we don't notice RLS symptoms. However, when we go to bed, the thalamus needs to be busy due to a chemical imbalance with hormones, and it kicks the RLS into gear thus creating the horrible feeling of not being able to lay still at night. He suggested listening to songs that are NOT soothing sounds, but instead rock music or other types that engage the mind more fully than nature sounds. I am on the road to believing him since it seems when I try to practice the CBT techniques of getting up and doing something calm .

Oh boy, both your symptoms and outcomes sound so similar to mine @degarden_girl .... I too took drugs designed for treatment of Parkinsons before Requip came on the scene. And yes, they made me very ill too, and I had a blasting headache the next day as well.