Anyone with experience of PLMD withou... - Restless Legs Syn...

Restless Legs Syndrome

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Anyone with experience of PLMD without RLS?

Alfsdad86 profile image
9 Replies

Hi all.

Firstly, I feel I’m getting more from this community than contributing, for which I apologise, but I’ve just started my journey and hopefully I will be able to contribute more as my experience grows.

So basically I have PLMD, not RLS. The only symptom I get that I know about is being really fidgety in the evening, to the point where I have to sit almost naked as I can’t bear the feeling of my clothes touching my skin, and I’ve no idea if it’s actually related to the condition or not. The rest I apparently get while sleeping. Daytime sleepiness is the biggest issue I had, along with feeling on another planet, the reason I sought treatment in the first place. Now I’m on 2mg of requip daily and my daytime sleepiness is worse than ever, I can’t stay awake longer than 22:00, I just seem to pass out, then at 8am my partner is practically dragging me out of bed, then I’m spending the remainder of the day wishing bedtime would come sooner. The common theme with all the medication seems to be sleepiness. I appear to be stuck in a lose/lose scenario, leaving me wondering what the point in being treated even is. Many of yourselves have the benefit of the medication relieving your RLS symptoms, for which a bit of sleepiness may be worth it, but for me the meds don’t relieve anything I’m aware of, and I’m starting to wonder if there’s any point.

Anyone with specific experience of just PLMD without RLS out there that may be able to offer some advice?

Many thanks,

Sam

9 Replies
Jaydee1507 profile image
Jaydee1507

I'm told by people here I have PLMD. If I have RLS is very mild indeed and rarely happens. Have you tried getting your iron stores up?

The other thing that has helped me before is cutting dairy out. There's a link with dairy stopping iron being absorbed and people with either RLS or PLMD need high iron stores.

Hope this helps and you have my sympathy.

Alfsdad86 profile image
Alfsdad86 in reply to Jaydee1507

Thanks for the reply. My GP tested my iron as part of my treatment and apparently it is ok.

I’ll have to look into the dairy thing, I never knew that :)

Jaydee1507 profile image
Jaydee1507 in reply to Alfsdad86

Just saying but you may need to educate yourself and your GP about iron levels. I would need to double check but I think my ferritin needs to be over 100. Some docs want it at 200. It's not about how much iron is in the blood, it's to do with how much iron is in the brain which of course is hard to measure! A normal iron level isn't enough, it has to be 'optimal'.

Be careful how you take it also for best effect; see instructions on packet but dairy for me can be a nono.

hopkinsmedicine.org/neurolo...

Jelbea profile image
Jelbea

Hi there. It sounds to me that you are suffering from restless legs. Your inability to stay still in the evening would definitely point to RLS. I find that during the evening I get more and more uncomfortable in my clothes and often change into a cotton nightdress for relief. I blame man made fabrics up to a point for this - rightly or wrongly. Some of the others here might be able to guide you on your present treatment which might even be making your symptoms worse. Do you know if the PLMD is controlled at present for if not this could be causing your extreme tiredness. Hope this helps.

DicCarlson profile image
DicCarlson

Hopefully someone will respond with additional information about Requip. It sounds like the sleepiness is a side effect of this drug.

CORFUORBUST profile image
CORFUORBUST

Hi Alfsdad86

I have PLMD and RLS at the extremely severe level. That means on the sleep study for RLSI scored 38/40. Then they wrote I also have PLMD with all limbs thrashing, whole body and head jerking. I have had all the iron levels checked and they even asked me if I was taking iron supplements as my iron was so high. I do not, by the way. These were the ferritin levels. I am also coeliac and on the low fodmap diet for IBS and other intolerances that come along with coeliac disease over the years. I have also become lactose intolerant about 6 years ago and although I can drink small amounts of milk in a tea or scambled egg and I can also eat cheese and dairy products with no problems, it is just milk lactose that bothers my belly. I am mentioning this as I have been coeliac for about 12 years and I have only had sleep problems in the last 4. I was disgnosed about 3 years now with RLS/PLMD. So that is a bit about me. I have told you this as my diet does not contain most, if not all, of the known aggravates of RLS.. So dietary wise I have no solutions unfortunately.

How my PLMD works is that as I relax at any time, day or night, as my body relaxes my arms, legs, body and head start thrashing and kicking. I cannot count the times I have whacked my OH in the middle of the night, sometimes a black eye has appeared! Also, if I sit down, again as I start to get comfortable, my leg or body will just kick out/jumo up for no reason.

I do not take any medication as I have had an allergic reaction to them all. Gab, Pregab, Ropinrole, etc. What I had been taking for the last 4 years was Tramadol, this worked for me on all levels. It must relax the muscles and stop them "jerking" around. The sleep clinic had given me Melatonin as I had none on the blood test, due to my system not tolerating so many different medicines. It did work, but, unfortunately, it gave me a banging headache in the morning. I think it is a known side effect. I cannot stand these headaches so then they gave me Propranonol to take every morning to stop the headaches coming. I was not impressed with taking pills to help me sleep and then taking more pills to stop the side effects of the first pill. So I just gave up on them and just suffered a bit with only the Tramadol. Now I have serious problems as I have become allergic to codeine. So no Tramadol, Oxy or even a Co-Codamol. I was sweating like a waterfall and itching like a I had fleas so I had to stop Tramadol. Oxy did the same as Tramadol, sweating and itching. I started taking 2 CoCodamol at night in place and now I have started itching, so they will be going in the bin now too. I went back to the sleep clinic last Thursday, told them everything and they said go back on the Melatonin and ask your GP for different pain killers and that was that. I think now they are fobbing me off and wanting me off the list. These neurolgists are a pain up the backside as if they cannot find out what is wrong and give you the correct treatment, they just don't want to know you. They are so egotistical that if they cannot cure/treat they just want rid of you off their books. Now they are referring me to another neurologist as they are saying that maybe something else is going on other than the RLS/PLMD. Fobbed off!!!!!

Sorry, went a bit off track there. I am supposed to be trying to help you!!

Basically, the Melatonin does work for me. I started back on them from Thursday and by last night I slept for 10 hours. I went to bed about 12am, I woke up about 3am as someone came in my room, other than that I do not remember anything until 10am today. I never normally sleep that long and I think it was because I was up early for a hospital app!! I am not complaining though, I'll take the sleep when I can!!! So if you can put up with a heavy head first thing and then take two more pills to stop migraines coming, maybe try my regime. The headaches do get worse as time goes on but, maybe, fingers crossed, you won't get such bad side effects as I do. One Melatonin 2mg at night and 2 Propranonol 10mg in the morning, I do not feel tired like I normally do, probably because I have slept well. I am raring to go today. Of course, this could all be a fluke and by tonight I could be kicking and hitting again but, fingers crossed it helps for a while.

I hope some of this helps you and anyone else out there reading. Like you I tend to come for help and have not had the will to write my own story too often. I need to pay it forward though as I have been using this site for a few years now, oops!!

Adding another point. I have been typing this for about half an hour or so and I have not had a PLMD. Just really noticed this as I am sitting in a chair/desk and that is normally so uncomfortable for me. Amazing!!!

Who does not love an exclamation point!!!!!!!!!

Both Melatonin and Propranalol are known to make RLS worse!

Basically someone has prescribed you something presumably with the intention of improving your RLS/PLMD, but are apparently ignorant of the actual effect they may be having.

If you have problems sleeping, then a benzodiazepine might help, or at least, won't make things worse.

Propranalol is a beta blocker

webmd.com/brain/restless-le...

Melatonin lowers dopamine levels and triggers RLS

naturalmedicinejournal.com/...

It does sound to me, I agree with Jelbea, that you do have RLS. It may however be mild. PLMD rarely occurs without RLS and up to 80% of RLS sufferers have PLMD.

I realised I had PLMD before I became aware of my waking RLS symptoms. My wife said I was kicking.

Oddly, as years went by my PLMD subsided, so I'm told, but my RLS got significantly worse.

I sometimes find the touch of my clothes very irritating. I am extremely oversensitive to touch. That along with other sensitivities, is due to my Aspergers. However that can happen any time of day. The fact that it happens to you. in the evening is probably RLS.

The treatment for RLS and PLMD are more or less the same, however, I believe there is some evidence that Dopamine Agonists such as Ropinirole (Requip) are better for RLS, whereas an alpha 2 delta ligand, e.g. Gabapentin is better for PLMD.

alaskasleep.com/blog/limb-m...

I did take a Dopamine Agonist, Pramipexole, for years. I did find it made me very drowsy at first. However, I was taking it for RLS, not PLMD and it helped, because otherwise, I couldn't get to sleep. That initial drowsiness wore off after a while.

Later, Pramipexole caused insomnia so I was drowsy during the day due to sleep deprivation. I switched to Gabapentin.

Gabapentin can also cause some drowsiness, so it's best to take it shortly before bedtime.

Your sleepiness during the day probably means your PLMD is still affecting the quality of your sleep, so perhaps the Requip isn't working. Additionally, Requip is slow release so acts for longer. I think that as you mainly suffer PLMD, and that' only when you're asleep, a shorter acting medication might be better.

I suggest you try switching from Requip to Gabapentin, it may be better for your PLMD, help you sleep better and possibly feel less drowsy during the day.

Alfsdad86 profile image
Alfsdad86

Hi all, thank you for the replies. I tracked my heart rate with my watch last night, not sure why I haven’t thought of doing this before. I’ve attached the image below. It appears that my PLMD is still present, I guess I need to see the doctor again.

imgur.com/a/1iYVgzD

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