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Severe Restless legs

(42 Posts)
Irisheyes Thu 14-Sept-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.

growstuff Tue 26-Sept-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.

Coolgran65 Tue 26-Sept-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 Mon 25-Sept-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.

Janetashbolt Mon 25-Sept-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.

GeeKay Sun 24-Sept-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. . .

Coolgran65 Thu 21-Sept-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.

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

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

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

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

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

Thanks Fleurpepper, I’ll try that too.

Fleurpepper Tue 19-Sept-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.

Irisheyes Tue 19-Sept-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.

pennyhapenny Tue 19-Sept-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.

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

Ok, I’ll give it a go pennyhapenny 😊

VioletSky Mon 18-Sept-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...

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

I promise you, it's worth a try smile

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

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

Nitpick48 Mon 18-Sept-23 16:48:22

As far as I know Restless Leg Syndrome is nothing to do with cramp….cramps are usually muscle spasms, whereas RLS involves the nervous system, though the actual cause is currently undetermined. It’s also called Willis-Ekborn Disease and causes an uncontrollable urge to move your legs.

pennyhapenny Mon 18-Sept-23 15:29:34

I saw one of the English rugby players some years ago saying that he had suffered terribly from cramps (restless legs are just mini cramps, I believe) and that pickle juice had been a total revelationary and instant cure. I have tried the pickle juice from the gherkin jar for restless legs and, sure enough, it settles it instantly. I think you can buy it for the purpose of curing cramps and this is supposed to work even better, but it's a jolly sight more expensive than a jar of gherkins!

www.today.com/health/diet-fitness/drinking-pickle-juice-benefits-rcna96436

Bath79 Mon 18-Sept-23 07:34:13

First post! I get this too. It is annoying when you are with friends for an evening and have to start rubbing your legs and moving. I wake up with it too. Have tried Vitamin D to no avail and my iron is fine. Local pharmacy with an in house private Dr suggested Ropiniprole tablets (have to be prescribed by Dr) but I looked at the side effects and they are horrific. I don't like Tonic water either. It's helpful to hear of other people with it though.

57VRS Sun 17-Sept-23 19:24:03

Im another suffering with restless legs but i have found that drinking tonic water regularly helps alot. Also passed this info to my father in law who also suffers and tonic water has helped him too.

Stillstanding Sun 17-Sept-23 17:38:18

I had restless legs and had several years of agony. Then someone suggested Vitamin D. I had a test done privately as this was not done on the NHS years ago and my level of it was extremely low and I had an injection of Vit D. It took several weeks to get through into my system but it worked. I now take Vit D on a regular basis. Rarely get the leg problem but now rubbing legs is enough.

Just to mention never over dose on the Vit D as it it dangerous if you take too much.

Since then Vit D has become quite the thing and GPs will usually test your level.

Tricia2 Sun 17-Sept-23 17:27:00

I have restless legs but not too severe. I always wondered if it has something to do with the sciatic nerve.

Nitpick48 Sun 17-Sept-23 16:52:25

Further to my previous post, Clonazepam is Klonopin in the US. It is a benzodiazepine and can be addictive so something to be aware of. I use it about once a fortnight.

Nitpick48 Sun 17-Sept-23 16:48:59

Hi
I’ve had Restless Leg Syndrome since a knee replacement. I’m in the UK and it might be different here, but there are a few things I’ve tried. Codeine (30mg at night) and/or Clonazepam (up to 1mg) can be taken as and when I need. The other drug is Gabapentin (Neurontin) 300-400 mg at night but this has to be taken all the time. Since I’ve been on Gabapentin I don’t need the other drugs much, only occasionally if I’m travelling, or in the cinema and can’t sit still. I did put a few lbs on when I started on Gabapentin but I was on a higher dose, and gradually weaned myself down to the lower dose (400mg) where it’s still effective, and the weight has come down .

crazyH Sun 17-Sept-23 13:31:19

Irisheyes. - my cure was drinking a glass or two of Indian Tonic Water daily. It’s not an immediate cure, but gradually, the RLS decreases and then disappears completely. Talk to your Doctor first.