Anybody Have PLMD &/or Restless Leg Syn.?

I have had a fairly mild case of restless leg syndrome for awhile It is manageable. Recently, however, I have also developed periodic limb movement disorder, where my left foot and ankle jerk and kick involuntarily about every 40 seconds or so when I try to sleep. Does anyone else have this? If so, what are you doing about it? I know there are meds. Have you found any useful?

Many thanks to anyone who might be able to respond.

I'm afraid I don't have a lot to offer with regard to this other than to say I developed what I presume to be RLS quite a few years ago now. (I never saw a physician about it.) Over time, it seemed to spread throughout my body. So now I have that RLS sort-of feeling pretty-much throughout my body. I once mentioned it to the pdoc I used to see. He offered to write me a prescription for Klonopin. He said it would smooth out that RLS feeling. However I declined.

I sometimes feel the need to "jerk" one of my legs when it feels as though that RLS feeling has built up to an uncomfortable level in it. But it doesn't happen involuntarily. I do it intentionally. I was on the maximum recommended dosage of Cymbalta for a while a few years ago. And I developed something in my arms akin to what you describe. Where I would notice it, in particular, was using my computer mouse. I'd be moving it around on the mouse pad & all of a sudden my arm would jerk forward slightly. Once I was off of the Cymbalta this jerkiness went away.

I sometimes have this problem related to my MS. my treatment providers have me on muscle relaxers. (wont place the actual name of the meds as some online sites have rules about this due to sometimes people take the mention of certain meds as a recommendation that they should try or be on that med)

my suggestion contact your medical doctor, they can help you with this so that it does not keep happening for you.

Thanks for that. Let me just quickly ask you this, does whatever medication you have used for this issue seem to have helped you? Apparently in reading about this, some patients get better for awhile and then worsen with treatment, especially with the dopamine agonist approach (I guess they call this 'augmentation'). So, some people on some of these boards and sites and in some of the actual medical literature recommend caution about treating PMLD. It just seems that not a lot is known about this disorder. Thanks again for replying. I do appreciate it.

Yes it has helped me....

your finding conflicting info and personal experiences when asking this is normal. medications are not one thing fits all. its where the same med can affect many in different ways. for some the same meds will help for others they may need the dosage changed or have it coupled with another med too, or even different diet, exercise... so many elements go into whether a medication will work for one and not another.

my suggestion is just contact your treatment providers and work with them, it may take time but sooner or later you and your treatment providers will find the right one for you.

Gabapentin/neurontin works well for me.

Yeah, this is weird, since I just stopped my Neurontin a few months before this PLMD stuff started. Maybe I shouldn't have done that...

bpcyclist, I have this condition that rears its ugly head when my ferritin levels get too low. Then I have to up my OTC iron supplement and if i take the iron every other day (for better absorption than every day), the symptoms disappear in about 3 weeks time.

I have tested this out over the past few years b/c I struggle with anemia and notice when my iron is really low, my legs and arms go crazy at night when I try to sleep.

So, one possibility is that your iron ferritin level is low right now. That could potentially be causing it. UpToDate

Thank you!! I seem to remember in my recesses reading something about iron/anemia and this stuff and had totally forgotten about it or just blown it off. But, the interesting thing is, I take no supplements and eat basicsally no meat of any kind pretty much 98% of the time. So, I wonder if I might be anemic.

Wii find out this week as I have blood work pending. we'll see.

I used to be vegan then vegetarian but both of those eating styles made me vitamin and mineral deficient. Not sure how that happened but I had to start eating meat and fish and liver and take supplements regularly to restore my iron, D, B, C, Magnesium and others. My body did NOT like it when I removed meat and fish from my diet. Maybe that happens with age, as our digestive enzymes break down the older we get.

Hopefully you are just low with your iron. That's an easy fix. If you are, use the Slow FE Iron brand from Walgreens every other day and it will increase your levels in 3 weeks without any constipation or cramping. Or take a supplement that has Vit C with it in the supplement.

Or, you could be dehydrated or stressed which can also cause restless leg or arm syndrome. I"m a bit of a hypochondriac these days so I scour the medical journals for answers. Eh, what can you do.

I have RLS. It's severe and related to low ferritin. I get iron infusions, I V iron.

Tomorrow is my last of four, once a week for four weeks. Then I should be ok on meds for 6 months to a year.

I find it to be very disruptive to my life. Of course I'm fortunate that there is a treatment for it. I take carba dopa. I wonder sometimes if it's related to being awakened as a child at night.

@Paper Roses, I'm super scared to get an iron infusion. I have heard that the liquid ferritin can cause an allergic reaction in some people. I've also heard that it can take weeks for the body to absorb the liquid iron and during that time the body's absorbing the iron all kinds of really uncomfortable side effects happen. What has been your experience? I just take OTC supplements b/c I'm such a wuss. I think the highest I ever got my ferritin level was 30 and then I stopped supplementing and it fell back down to below 20.

Blanche
I took supplements for years. I have had serious stomach problems. I finally decided to stop the iron..after a week stomach discomfort was gone. I started them again. Problems returned.

I told my doctor. She recommended iron sulfate infusion. I had a reaction. Not anaphylaxis but serious enough. She changed it to iron sucrose, a milder less likely to cause reactions from of I V iron. I had no choice because I believe, doctor does not agree, that the prolonged use of the tablets caused a stomach bleed.

Iron sucrose caused some mild side effects. Slight rash and pain that was managed by Tylenol and Benadryl for 24 hours. My numbers went to 200. It did not go below 20 for a year. I can live with that.

That being said, how it might effect you is unknown. As I grow older I have had to make difficult decisions. I do a lot of research. Mayo clinic website says the iron tablets can cause bleeding in rare cases. So I weighed the cost and benefits. Once a year, 4 x one a week for Four weeks. The first time a different doc gave the full dose in one infusion. That was awful. So I recommend spreading it out if you try it. If pills are working then you are probably better off using them.

Good luck. We have to have iron. Mine went to 2 one time. It's tough.