Severe RLS

[TaliTheTiger]

Hi I started at 17, it’s got progressively worse over the years, I’m now 45. I’m at the stage where the RLS is very painful, I can go 3/4 days and nights with no sleep. Have tried all the usual routes of medication and get no relief whatsoever. Have been looking at nerve decompression surgery at a clinic in Colorado. Has anyone here had the procedure? I’m exhausted, fatigued beyond belief, it’s impacting on my mental health and to be honest the Dr just doesn’t seem to get it.

Here is a link to a short period of sleep. youtu.be/1sQmKis_lx0(Not working as expected?)

[Hidden]

Hi! Is this a video of you? This looks more like PLMD (especially the upward thrusting of the toes). The reason I say that is because if movements this wild were conscious, I wouldn’t be able to stay lying down.

[TaliTheTiger in reply to Hidden]

Hi, yes this is me... I had been awake since Saturday morning with no rest at all, my legs are like this 24/7 awake or asleep. That was the first sleep I had got in around 78 hours... the actual length of sleep was 52 minutes and the whole time I’m thrashing around like that.

Even sat here now my legs are constantly moving. Another night with not a minutes sleep. 🙁

[Hidden in reply to TaliTheTiger]

Man, I’m so sorry! How miserable! Let’s see...

Here is a list of things that I use. Everyone is different, so these might not help you:

Have you tried support stockings? The tightness these provide helps control my movements (to a point).

I have a 7-8 kilo weighted blanket (a company called Sensory Goods makes these) that I put over me. Before you say that this sounds like torture, I recommend giving it a try (or any heavy blanket). My sister-in-law recommended I try this as a way to stay in bed. I was very sceptical at first (and even said it’d be torturous), but I now have one and am pleasantly surprised! It does keep me in bed through small attacks (although I still feel the creepy crawly feelings that we get inside).

There is a cream by Magnilife called “Relaxing Leg Cream” that provides a calming sensation to my legs when I massage it on them.

Magnesium oil helps most of the time

I have a heated massager that I roll over every inch of my legs that helps

Have you tried a hot shower or bath as relief? I have a jet spray option on my shower head that I use. The pounding feels soooooo good.

I don’t like to mention meds. since everyone is affected by them differently, but I was recently able to get off one of my psychiatric meds. and I haven’t had a wild attack since!

Hope one of these helps...

Take care!

[Radone in reply to TaliTheTiger]

andersonpodiatrycenter.com/ I assume this is the clinic that your talking about for surgery. There is a video of the actual surgery and the Doc talking

[Jai1 in reply to Hidden]

Hi what is plmd

[RupertMac in reply to Jai1]

Period Limb Movement Disorder. It is viewed as a separate condition from RLS but closely associated with it, in the sense that a great many people suffer from both. Crudely, RLS happens while you are awake, whereas PLMD happens only when you are asleep (like in this video).

I have both and find that I can occasionally sleep through PLMD (my wife tells me about it the next day and I have no memory of it) but it often wakes me up and at that point I usually have to get up.

[Hidden in reply to Jai1]

Adding onto Rupert’s explanation, PLMD is different from, yet similar to, RLS. Whereas RLS is diagnosed through verbal history and feelings, PLMD can only be diagnosed through a sleep study (since it’s unconscious, meaning the person is unaware of the movements). It also goes by the acronym PLMS, which stands for Periodic Limb Movement during Sleep. It is characterized by movements of the legs every 20-40 seconds. 80% of those with RLS also have PLMD.

[LotteM]

Hi Tali, that sounds terrible and you must be utterly exhausted! You have come to the right place as quite a few of us will recognise this.

To be able to give you iseful info amd suggestions, it would be good if you could share with us 1) what meds and in what doses you have taken before for your rls and 2) what meds you are on now, including other meds and otc stuff.

I trust you have already looked at and read ‘everything’ on the following websites? rls.org, rls-uk.org and rlshelp.org. All these have trustworthy information. And this forum of course.

[Madlegs1]

The links for those sites are

rls-help.org

rlsuk.org

rls.org

Certainly looks and sounds more like PLMD - but could be aggravated rls from augmentation.

When we have answers to Jess and Lotte , we can help further. Especially how long you have been on the various medications.

Cheers.

[Joolsg]

That was me during Augmentation on Ropinirole (Requip). What meds are you on now, if any?

[Phogan]

What medications have you been taking? I have chronic restless legs and have been tortured with it since childhood. I am now 64. I have it all over my body. The medication I take works 100%. I have no RLS pain anymore and I have absolutely no symptoms.

Please advise me of the medications you have been taking to help but have not worked and if they are not the ones that I am using I will let you know

[BoldMove]

Do u go to a neurologist? Would he be able to isolate the nerve. Very intriguing.

[gypsymooms]

That is different from mine. Mine are more like violent jerks where my leg snaps out really quick. Almost like a tic. My arms jerk too and sometimes my back. Makes me wonder..... Jen

[ba924 in reply to gypsymooms]

That's the way my legs did,violent jerks.Hy doctor increased my Requip and it got even worse.I weaned myself off the Requip and now control my rls with over the counter Magnalife Restful Legs and magnesium oil.I also use stop pain on the bottom of my feet.Seems like treating the bottom of the feet with the cream or oil works too.I use the Stop Pain for this because it isn't oily or greasy.I no longer have the jerking after I stopped taking Requip.I'll never take that stuff again.

[gypsy49]

Know the feeling all to well i've only had around 4hrs sleep since Saturday its now 6.25am here hope you've managed to get some sleep , your not alone in this x

[nightdancer]

Potassium is a touchy thing, too much is bad, too little is bad. Please get tested before taking something that SOUNDS safe. Know your supplements. A cool bedrm IS good for sleeping, BUT if one had raging RLS, it will not make much difference, except that you will not swaet while you are thrashing.

[LORIJEAN50]

I BELIEVE IT HAS TO DO WITH CHRONIC INFLAMATION--GOING TO DRY SKIN BRUSH AND WATER FAST