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Severe Restless legs

(42 Posts)
Irisheyes Thu 14-Sep-23 22:33:37

Since knee replacement surgery i have been plagued by restless legs, far worse than ever experienced. I’m taking magnesium but have now been prescribed Pramipexole which helps but has unpleasant side effects. Because i suffer every night i don’t feel there is much choice. My physio suggested leg massage and I’m wondering what works for other experience severe RLS.

Delila Mon 18-Sep-23 17:17:22

Restless legs and cramps are completely different from each other, although it’s not uncommon to suffer from both.

pennyhapenny Mon 18-Sep-23 22:03:45

I promise you, it's worth a try smile

VioletSky Mon 18-Sep-23 22:21:14

Maybe there is some correlation because, flexing your foot upwards relieves a cramp and it definitely helps with RLS for me...

Delila Mon 18-Sep-23 23:32:09

Ok, I’ll give it a go pennyhapenny 😊

pennyhapenny Tue 19-Sep-23 15:14:16

Will be interested to know the results! I have a tablespoon and a bit from the gherkin jar. I haven't ever bought the custom made stuff.

Irisheyes Tue 19-Sep-23 16:32:12

Thanks for all your support. I’m taking high dose magnesium at night and one pramipexole earlier in the evening than previously. Had three good nights, will see how I go on.

Fleurpepper Tue 19-Sep-23 16:54:18

There are very goo acupressure points which can help- the liver points. Go up the 'valley' between your big toe and second toe, about 1 inch towards foot. Press on that point for about 2 minutes at a time. Depends how flexible you are for self-administration- or ask someone else to help. You can do both points at the same time- again, depending on flexibility.

Delila Tue 19-Sep-23 18:59:25

Thanks Fleurpepper, I’ll try that too.

Charleygirl5 Tue 19-Sep-23 19:21:06

A light massage of both feet and legs to knee level may also be helpful.

LinkyPinky Thu 21-Sep-23 14:16:20

I rub magnesium oil onto my legs in the early evening. Works for me.

Coolgran65 Thu 21-Sep-23 18:51:27

I understand that rls symptoms are caused by lack of iron in the brain. Nothing to do with an ordinary blood test for iron. It's the Ferritin Serum Iron that is tested.
The brain sends out the signals that causes the horrible crawling symptoms. Walking, stretching and massage interrupt the signal and this gives relief which may be very temporary.
I am an rls sufferer of 40 years and have rls 24/7.

GeeKay Sun 24-Sep-23 11:27:19

This isn't for everyone, I know, but marijuana kills my RLS bouts STONE dead. . . no kidding!

Shame it's still illegal, though - and after all these decades. It's beyond Parliamentary/Daily Mail boneheadedness, of course. Still, that's another story. . .

Janetashbolt Mon 25-Sep-23 18:58:24

I swear I have no financial interest...I use the revitive footplate thingy. Used to take 300m quinine a night for leg cramps and restless leg don't take any now. Use the machine for 1 hour twice a week.

growstuff Mon 25-Sep-23 19:37:30

Coolgran I've had severe RLS for a few years, although not permanently. I'm afraid none of the home-grown remedies have worked for me. I've had my Ferritin Serum Iron tested and it seems to be normal, so there's something else going on. Diabetes is a risk factor, as are some other conditions. I took ropinirole for a while, but I wasn't convinced it was having much effect, so (with my GP's agreement) I stopped it.

When I have a bad attack, which can last for weeks, I've just learnt to accept it. It disrupts sleep. Thank goodness I don't work any more. If it happens at night, I get up and walk around and grab what sleep I can, whenever I can.

Coolgran65 Tue 26-Sep-23 04:44:57

growstuff regarding the Ferritin Serum anything from 20 is considered normal. An rls sufferer needs a level of around 100. Ropinerole didn't help me either. It's a horrible disease. I am now up at 4am having been wakened by an episode. It will some walking about for about a half hour in the hope that it calms. Walking/continuous movement interrupts the signal from the brain.
The same thing happened last night at around 9pm after I'd been sitting for 20 minutes. Two cocodamol 30/500 relieved that episode though I had to walk for a time until the medication kicked in. A non sufferer has no idea of the distress rls can cause. Before medication I once wept through a 9 hour flight from UK to West coast USA.

growstuff Tue 26-Sep-23 14:24:18

I just checked my last Ferritin Serum result. It was 98.1 ng/ml, so not that far off 100 and much higher than "normal".

I can really relate to your last two sentences Coolgran. People who have never experienced RLS think you're bonkers, if you try to explain how distressing it is. I've never been on a long-haul flight for the reason you describe.