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Severe Restless legs

(41 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.

Lilypops Thu 14-Sep-23 22:39:19

Oh Irisheyes. How I sympathise , I have restless legs every night, funnily it seems to start the same time every evening. 9,40 pm. It keeps me awake , the other night I didn’t get off to sleep until 3.30am.
I went on Pramipexole but I didn’t like the side effects either,
I have no answers but I do feel a bit better after massaging my legs for 20 mins , it’s an awful condition isn’t it,
I can’t go to the cinema because after an hour of sitting my legs get restless and I have to leave the cinema. I hope someday there will be a cure for this. I hope you feel better soon

Doodle Thu 14-Sep-23 23:01:18

Irisheyes my DH has had severe RLS. Up every night for hours walking around.
Two things. pramipexole can produce a thing called augmentation which is where the medication first helps things calm down but then your body gets used to it and it makes the symptoms worse. DH has spent months trying to come off pramipexole. I would read up on it if I were you and ask your GP if you could go onto Pregabalin which doesn’t cause augmentation. Also look at your iron levels. DH had RLS badly for years but after an iron infusion his symptoms got remarkably better. Hope you get some relief soon.

luvlyjubly Fri 15-Sep-23 08:07:57

I have found a homeopathic remedy that works for me called Rhus Tox. 30C. I bought it via Amazon and it was cheap. I was amazed that it worked after trying many other things to no avail. Worth a try.

Irisheyes Fri 15-Sep-23 20:02:08

Thank you for your messages of support.

Georgesgran Fri 15-Sep-23 20:07:28

I can second Rhus Tox. It definitely worked for DH and his Sister swears by it.

VioletSky Fri 15-Sep-23 20:08:49

Have you had your iron tested?

I am always low iron and remembering to take them does seem to help

I will also get up and go for a walk around the house if it is too painful to sleep...

pascal30 Fri 15-Sep-23 20:16:45

I seem to get worse restless legs if I eat bread and sugary things. I take 5mg zolpidem Tartrate which at least gets me off to sleep for about 4 hours. I didn't find any difference with rhus tox but hope it works for you..

cookiemonster66 Sun 17-Sep-23 11:17:29

I also have had knee replacement I take two of these magnesium capsules half hour before bedtime and it has stopped my restless legs completely, they used to twitch and kick constantly. Check the dosage of your magnesium and compare with two of these which I have found to be the best on the market (after wasting my money on previous non effective ones)

Gwyllt Sun 17-Sep-23 11:25:11

Just looked up the side effect some sound worse than what they are supposed to help
As a side line have you had any other meds changed ?
I developed restless legs when put on anti depressants for depression caused by being on prednisolone
Stopped when discontinued

Delila Sun 17-Sep-23 11:28:09

Cookiemonster, thankyou for that link. I’ve just bought magnesium glycinate in the hope it will help with restless legs. Like magnesium citrate, it’s supposed to be easier on the stomach than some other forms of magnesium.

mousemac Sun 17-Sep-23 11:35:41

You could try CBD.

Gundy Sun 17-Sep-23 11:36:27

I never had it till I got older and even then, intermittently. For people who suffer from RLS on a daily basis, I can’t imagine how horrible it must be - you must dread going to bed at night.

The few times I seem to get it is always in the early part of retiring for the evening. Once I fall asleep I’m good, but getting there is a peculiar problem. I get up and walk it off, move around, do things and then go back to bed. I never get this in the middle of my sleep at night.

After noticing that I seem to get episodes of this is when I’m over-tired and exhausted. I sleep/nap during the day to make up for adequate rest. The next evening I’m fine.

Can’t pinpoint to diet or food intake as a cause. But I have “suspected one culprit” perhaps - soda, like Coke. I’m not a soda drinker per say, but when I do consume..?? I’m beginning to wonder…??

People who constantly drink soda suffer from a myriad of problems. It is a poison in the food chain.
USA Gundy

Delila Sun 17-Sep-23 12:36:03

Thanks mousemac, I’ve seen CBD suggested - there seem to be mixed opinions about it.

sharonarnott Sun 17-Sep-23 13:01:39

I have this. I now take magnesium citrate every evening and it has worked wonders

Gwenisgreat Sun 17-Sep-23 13:22:18

I give my DH Rutin Which I buy online (60mg) He has 3 per evening and seems much better. For us The Holland & Barrett Rutin is too strong. I take it also to minimise cramps.

crazyH Sun 17-Sep-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.

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

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 .

Nitpick48 Sun 17-Sep-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.

Tricia2 Sun 17-Sep-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.

Stillstanding Sun 17-Sep-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.

57VRS Sun 17-Sep-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.

Bath79 Mon 18-Sep-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.

pennyhapenny Mon 18-Sep-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!

Nitpick48 Mon 18-Sep-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.