Phantom Restless Leg

[ziggypiggy]

Interesting read if you have a few minutes. I've always wondered if RLS symptoms would change after an amputation ? Let's be honest. (In no way making light of the situation.) At some point or another during an awful bout of RLS I'm sure many of us have ignorantly cursed out. "Just get rid of these damn things."

karger.com/Article/FullText....

[DataRN]

I just read this article while pacing after RLS woke me up here in the US at 3am. So yes, I will admit, I have wondered what would happen if I “cut off my damn legs!” Interesting article. Thanks for sharing it!

[Goldy700 in reply to DataRN]

Unfortunately RLS is not just confined to the legs. In the last 5 years i now have it in my back and hips so fantasises about removing those pesky legs would get me no where...

[DataRN in reply to Goldy700]

I’ve been there too Goldy700 Sorry to hear you are going through that. When I went through augmentation from years of taking Requip, I remember RLS symptoms being awful in my wrists during the afternoons. Are you experiencing augmentation too?

[Goldy700 in reply to DataRN]

Hi DataRN - I now only take medical cannabis to treat my symptoms, along with hot baths, yoga and getting on my exercise bike until I feel extreme tiredness in my limbs. Most nights I can get a decent night sleep but have noticed as I get older the restlessness in the back can be more irritating than the legs and I think it is an age progression.

[DataRN in reply to Goldy700]

So glad to hear you have found ways to manage your symptoms. You must be in great shape. Good for you!! 🫶

[Cowbsky]

_ hi zigg_ that is interesting article, yet first 5 lines was enough for me, while confirming my few studies on phantom (essentially, Dona Eden's book, Energy Medicine, where is discussed pain on phantom limbs, not exactly RLS,...same thing for me);

_ one more reason to bless my legs in every night crisis (particularly the one around som 3 to 5:00 am)!! with a love bath as I call it.... it is part of my routine to completely battle my crisis in maximum 20 minutes, which includes: EFT full receipt + Dona Eden's energy exercises, Pranic Breathing, and, exactley, + and love bath and blessing my legs.... and not to be forgotten, 0.5 mg of Clonazepam before bed.

all the best and good luck_

[Mattly]

I may have some interesting insight on this! I've recently had 2 major operations on my feet for which I had an epidural each time, so I was entirely numb from my midriff down. And I DID get RLS even though I took some ropinirole beforehand. Ropinirole generally lessons - but does not eliminate - my RLS, and I felt the recognisable RLS sensations towards the end of the operation. RLS isn't about nerve endings, it's an issue with your brain and nervous system. So I don't think amputation would help much. On the contrary you cannot "move" a phantom limb, so cannot treat it by sending motor signals so you may be worse off.

[SueJohnson in reply to Mattly]

How much ropinirole are you on?

[Mattly in reply to SueJohnson]

I'm still on the same low dose I started with: 0.5mg a day. I've deliberately not upped it to avoid augmentation and I take breaks from taking it - a few days - for the same reason. Like I say, its not perfect and I can still get some symptoms, but it reduces them enough to make life liveable and allow me to sleep. I've been on it for several years without apparent augmentation, so so far so good.

[SueJohnson in reply to Mattly]

You are smart to not increase it Have you thought about coming off it and switching to gabapentin which does not have any risk of augmentation? The problem with ropinirole and other dopamine agonists is that the longer you are on them if you do have augmentation, the more likely it is when you have to come off it that then gabapentin won't work.

[Cowbsky]

_ agree upon....and maybe more has to do with RLS: Dona Eden, by aplying energy techniques, use to treat pain (l in Phantom limbs, very sucessufuly...

[macramegirl]

I, too, have wondered the same thing!

[RestLessLeg]

Hi ziggy,

I presume we’ve all given this some thought at some point. I too have fantasized the notion of amputation but as has been mentioned above I believe it’s neurological and the brain would either continue sending signals out or receiving signals from the phantom limbs.

In the end I’d be a torso with no arms and legs and STILL get sensations with even less options for relief.

That would be hell on earth… if I’m not already there yet.

[WishICouldSleep]

I want to add my comments to Mattly's. I have had RLS for fifty years, since my first episode on a long car ride when I was 19. In 2005, when I went through menopause it got so bad that I was crawling around my bed for five or six hours a night and getting about two hours of sleep out of every 24 if I was lucky. I went on Pramipexole then, and for a long time it was my miracle drug. (More on that in a different post.)

In 2014 I had a arthroscopic surgery on my right knee. I requested spinal anesthesia with no sedation because I wanted to watch. (I know, crazy. I'm an old OR nurse.) I wasn't particularly anxious because I had had this procedure before and didn't anticipate any discomfort. As soon as they laid me down on the OR table and my body was numb from the waist down, I started to have that old, familiar crawly sensation in my legs even though I had no other sensation and couldn't have moved my legs if I had wanted to. I knew I could have asked my anesthesiologist for sedation, but I decided to tough it out and eventually the RLS feelings went away--until I went to the Recovery Room. Then the feelings started to return, and I looked down at my numb legs and was astonished to see them scissoring in the air at about a 90 degree angle. The Recovery Nurse had no explanation. She had never seen or heard of something like that, but explained that after a spinal I had motor ability before sensation or motor control returned. I was fully conscious, not sedated, and my husband was with me as my witness. I had more pain and longer recovery after this procedure, and I have wondered if all that violent uncontrollable motion right after surgery was what caused the more difficult recovery

Since that time, I have asked all my anesthesiologists before every other surgery about this, and none of them said they had heard of this phenomenon. So thank you all very much for sharing the article and experience(s). And no to all amputation fantasies.