Current RLS journey

I've had RLS for about 12 years, and am also Hypothyroid. I search everything I can to find help. The nights are miserable and I find myself begging for mercy about the third day that has passed with no sleep. A few months ago, a neurologist added another diagnosis to my RLS.  He said that the jerking was so severe, in my arms and upper body as well as my legs, that what I have is RLS with Myoclonus. All of the medications that have been prescribed for me have produced such horrible side effects that I no longer take any of the usual dopamine-type medications. But what does help a geat deal is that nightly, I take: a Cal/Mag suppliment (1000mg Calcium/400mg Magnesium/ 60mg zinc.), Pantothenic Acid 500mg, Vitamin D3 5000 IU , and especially have to remember to take 60mg of iron. Some nights I can sleep for three hours straight, get up and walk around for 10 minutes and then sleep another two hours; other nights I can't sleep at all.  If I'm lying down or sitting, the jerking is most severe. Not until I get up an start walking around does it ease up. My body hols a lot of water so if I take my Lasix like I should, keeping my weigfht down, I don't jerk as much. It seems that I get my best sleep after the sun comes up in the morning. This disease makes no sense at all. It's crazy.

7 Replies

  • Hi Suzy, I hate to hear to about your suffering so I'll quickly touch on a few things to see if we can bring down that level of suffering.  Are you avoiding all of the substances known to make RLS  worse than it has to be such as antidepressants, statins, antihistamines, antacids, melatonin, Metformin, calcium channel blockers, sugar substitutes or even a large meal in the evening?

    How about other conditions?  How's your spine?

    I see you are taking iron everyday, and some minerals and it helps some.  That's great news!  This is what I do and it helps me beyond belief.  I take my iron supplement away from all other supplements and medications and on an EMPTY stomach right before bed.  Plus iron in the form of ferrous sulfate does not help me????  The only form I have found thus far that is my magic pill is iron bis-glycinate.  Brand names include Gentle Iron and Ferrochel.  You see, we with RLS have anemic brains, but not really anemic bodies.  So the idea is to make sure to take a form of iron that crosses the blood brain barrier and to take it at the right time.  The right time for most people is at night.  Ever wonder why we get RLS at night.  Humans' serum iron level drops at night, everyone's.  We who are predisposed to RLS feel it more acutely than the rest of the world.   I could get into the whole nuts and bolts of why this is but since I see you are already taking iron and it is helping it's only a matter of a little modification and you may see even more relief.

    Good luck!

  • Have you tried clonazepam. This gets me to sleep every night although other meds battle it with an insomniac effect. My wife has palatal myoclonus and has been on clonazepam for 12 years.

  • Have u tried Mirapex(pramipexole)? I take half of a 0.25mg tablet ( more if I need it)

    I suggest exercise also. Mirapex is a miracle drug for myselff.

  • Mariena I took Mirapex for about 15 years and over time found that my RLS symptoms got worse.  Finally after being on this site I went cold turkey this past November and went off it.  I have to say it was awful.  I cried and paced the floor.  I even tried Horizant and got so depressed.  I went off it.  Now the only thing I take is a small dose of Percocet which I cut in half and take about three halves at night starting at 6:30 PM.  I also take Trazadone (which I hear causes bad symptoms in some) at night.  I find that everyone on this site has different reactions than others which is so crazy in getting treatment.  I am glad Mirapex works for you but just wanted to warn you that it does cause augmentation.  I found out the hard way.

  • I read everyone's reviews of different pills etc.I moved to Spain last year and absolutely love it, but like most people on here suffer with insomnia.If I get 3 hours  sleep a night I'm lucky, after that it's more or less watching the clock go round.As far as I know it's NOT my RLS that keeps me awake,After taking my pills usually by bedtime my legs are ok.For the last 2 days I have been so down with lack of sleep I have cried and said I want to go back to the UK.I have tried tonic water,magnesium rub for the legs, sleeping tablets.but nothing( maybe a hammer lol )I am thinking of taking iron tablets but was told if you don't need the iron don't take it .I'll have to get some sleep soon , I'm worn out , and I can't have a sleep in the afternoon as my legs start as soon as I try to relax.

  • I know what I have to say may sound ridiculous, but I have found that sleeping on my right side has enabled me to sleep.  I have always gone to be and started on my left which is when my foot in my case but also my legs starts twitching and drive me insane, which I appreciate is nowhere as bad as many of you, has started, but since I go to bed on my right I have been very lucky.  But if anything can help it's go to be worth a try.

  • Check out the Relaxis pad for RLS. It worked on me. No more pain like before. You will have to work at it. Read about it on the Web and call. I made it, so can you.  Cfall 

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