Restless Legs Syndrome (RLS) Discussion Board

What you are going through beggars belief. I think of you often - hope you find strength from somewhere. Wishing you all the best.

Thanks everyone.

My spasms have been worse, just like I thought would happen. I am getting 2 to 3 hours inbetween them before they wake me up.
I have been riding my incumbent bike twice a night after spasms wake me up. Getting in 8 plus miles total.
Looking forward to my appointment on the 23rd.

Hope your upcoming appt leads to some changes for the better.

All the troubles you're having can lead us to despair, but life is short and time is fleeting (stolen quote). The more I see, the more I realize I've become one of those people who is wasting her life trying to keep up, instead of living life each day. Somehow we need to be able to roll with the punches better. Here's wishing this for all of us.

Thanks Beth

I saw Pulmonary doctor today who handles my Bipap. He has also tried to manage my RLS and leg spasms. No changes with him except he wanted me to try the Restiffic foot wraps. They were free to me so I said ok.
My first impression is they seem ridiculous. Difficult for me to put on and very uncomfortable. I don't know if I will be able to tolerate them. Since I am always up and down, I can't see myself putting them on and off all night.
Then saw the specialist for RLS, in Denver. I liked her. Spent over an hour and a half with me. She wanted some blood work done, which I will get done on Tuesday. Not sure what I will end up doing. She thought I might try a couple of meds in small doses, one at a time, for the spasms, since they are the worst. Amitriptyline and Klonopin. There may have been a third, but I can't remember. She sent them to PCP. I have taken Klonopin before, it didn't help my RLS when I first got it.
Regarding my labs my ANA has been high for may years. No Doctor has ever addressed this. It says there is inflamation in my body, autoimmune. Also my ferritin is very high. So both will be tested again on Tuesday.
I am to keep in touch with her via email, plus she will get the lab results. What she did say was that I am a person who will have to take several meds to keep things under control. She also told me there are some experimental drugs being tested.
Since it is so hard for me to get to Denver, I am to see her in a year.
So I don't know.

Deb, glad to hear that things went well in Denver. I have to admit that I was a bit nervous about how your appointment would go after singing her praises to you. So, I am glad that she has suggested some new things for you to try. As for email contact with her, I have learned that I need to be patient. Her emails are screened by her nurse. Sometimes that goes well and other times I have needed to send my requests more than one time before the nurse remembered to pass them along.

Ok, thank you.
Last night I knew my spasms would be bad, from being in the car all day. They started as soon as I decided to go to bed.
Upon trying to decide on my course of action, I decided to take some mirapex. I slept 8 hours. The best night I have had in a long time.
I have decided to restart it, but only every few days. I just haven't decided how many days apart.
Then when I go to my PCP next week, will talk about what else to try from the suggestions from Doctor yesterday.

Deb, glad you got a good nights sleep. How many milligrams of Mirapex did you take?

I took .125 mg I think. I have several strengths. I had broken the tab in half.
Plus I have to remember I can't take it every day, or it will reduce me to 2 hours a night, like it did before.

I double checked, I took .125 mg

Why don't you try half of that, 0.0625mg. There is an excellent chance you can take that every day without augmentation.

I have reintroduced mirapexin at the UK equivalent of .065 and it is working like a dream so far - though I am only about 3 months in. I take it 5 days out of 7 and use Kratom the other two. I don’t think my rls is anything like as severe as yours however.

YAY!

Deb, I augmented the first time in less than two weeks. I could easily take it 5 days without issue, even when my ferritin was only around 30. It worked well to take it Sun through Thursday so my week was peretty good, then be off on Friday and Saturday.

My ferritin was 8 when I originally augmented. It is now MUCH higher. I have since gone up to 2 months without any issues. If your ferritin is reasonable, I think you could try other alternatives. I was terrified to move it higher, but I kept adding a bit. First was 2 days. Then 3. Then 5. Once I did 5, I went to a week. Once a week, then 2, then 3, then 4. After no issues with 4, I went 6. After 6, then 8.

It was really hard to get over my fear, but eventually I did. I don't worry about it much any more.

Well, when I took it everyday 2 years ago I was a mess in one month, could only sleep 2 hours. I didn't take it last night. I must have had enough in my system, because I had no RLS or spasms. Slept great. My thought was only take it once a week. Like you said Ann, afraid to take it more often. I will experiment.