Restless legs/body, lack of sleep

[Artnmusiclover]

Please can anyone recommend anything to help me sleep. I do lots of the self help stuff, magnesium tabs/baths, chamomile, meditation etc but I've had the worst 2 nights of restless legs ever. Putting it down to the urgent increase in my pred for GCA (though that was a couple of weeks ago). Really cant deal with another sleepless night 😔 TIA

[Yellowbluebell]

Hi, have you tried an over the counter sleep remedy? Quite a few people have tried them and found them useful. I personally have tried OTC stuff and been prescribed lots from my doctor but unfortunately still have pred induced insomnia. Magnesium has helped people on the forum but may need to be taken/used for longer than you have. I do occasionally get a bit better sleep by taking phenergan but tou should run this pst your gp or chemist. YBB

[Artnmusiclover in reply to Yellowbluebell]

Hi, thanks for your reply. I haven't tried any over the counter remedies yet but am going to look. I'm a novice when it come to aids for sleep and restless legs.

[Hidden]

I am afraid restless legs are hard to resolve using self help. I used most of the things revommended on the NHS websites. I put myself in a position that helped if I could find one. I do have fibro and took extra tramadol as well, whether that helped or not I don't know. For a while capsaicin cream helped, then it didn't. My best solution was to just keep my feet moving until I dropped asleep. I have a quilt cover with a set of ridges and find rubbing my feet on those helps at the moment.

Sorry to sound so pessimistic... Sometimes you have to exercise your legs through the day. Distraction and massage and sheer exhaustion work in the end but if it's a bad flare of restless legs then you need to clear your head of anxiety about it and just move your legs around consciously rather than letting the body decide to flip flop. Tingle, burn or pain them. Good luck!!

nhs.uk/conditions/restless-...

[Artnmusiclover in reply to Hidden]

Thanks for the advice, ill try anything. Yes I think it's very strange how you can sit and chill during the day and it doesn't happen, then when you're trying to sleep bang! ...distraction is probably key. Was like peddling a bike last night! Thanks again

[Hidden in reply to Artnmusiclover]

I feel like it's a couple of marathons. No wonder tiredness happens through the day.

[Artnmusiclover in reply to Hidden]

It is for sure, would be great to find a magical spray to take it all away

[carolBF in reply to Artnmusiclover]

Can I suggest an idea to try is cooling your feet down before you go to bed in cold water this helps my husband whom has health issues but not PMR/GCA, he takes many different medication.

He has now gone on gabapentin for it and it has worked for him.

[Artnmusiclover in reply to carolBF]

I am willing to try anything. I am doing all of the things that have been suggested, even sleeping with a bar of soap by my feet, and I'm so grateful for it as it has definitely improved. It's my routine now, so I will certainly try that too, thank you 🙂

[Pongo13]

Check out health unlocked sleep site too for helpful hints x

[Artnmusiclover in reply to Pongo13]

Thanks, I didn't know that existed. Still trying to find my way around the site, some good advice so far 🙂

[Blearyeyed]

Restless Legs the great Pain in the Night!!!

Some people find a Magnesium supplement orally and Magnesium lotion or spray topically at night help reduce it.

B Vitamins and Potassium can also help , my small banana a day made a difference with neuropathy of all types and I make a homemade isotonic drink for the morning as Low Electrolytes can make restless legs worse and ruin sleep. Get your Electrolytes , Sodium , Urea , Potassium and Magnesium checked to see what you need most of before using isotonic drinks though , too much can also be a cause of the problem.

Using a cushion under your feet in bed to elevate the legs can help circulation.

Using a big U pillow to lie your legs on , cushion your neck and shoulders , and arms if required has helped me.

Using compression socks during the day ( as long as your Health issues allow it ) and light bed socks at night can stop changes in position and temperature causing your feet to swing in temperature.

Good Hydration during the day improves circulation , that helps your nerve pain and spasms in general.

Starting your sleep routine earlier in the evening , and doing some foot and ankle rotations and toe wriggling through the day and before you go to sleep helps.

Eating earlier in the evening . Relaxation and Deep Breathing exercises . Removing distractions from your room , good room temperature . They all help a little . Try the sleep site mentioned for other ideas too.

It's good to try natural methods before going for sleeping medications , always check with a GP or Pharmacist before trying OTT remedies just to be sure they don't counteract with your individual health issues or medications.

Each thing may help a little just to make it bearable , although on the higher GCA doses I know it can be much harder to cope with .

[Artnmusiclover in reply to Blearyeyed]

Wow, thanks for all those tips. It's so reassuring that theres all these easy to follow self help remedies. I have ordered some magnesium spray too. I'm loving this site, once again thank you for all your advice 🙂

[Purplecrow in reply to Blearyeyed]

Excellent selection of options...! Another is a hot bath before bed.

[Blearyeyed in reply to Purplecrow]

Ooh!! Lucky you , I can't manage a bath these days unfortunately.

[Purplecrow in reply to Blearyeyed]

Agree, getting in and out is akin to beached whale syndrome, however, one can fantasize about the lovely hot tub the neighbors just installed🤩

[Blearyeyed in reply to Purplecrow]

I love the hydropool I sometimes wish I could live in that , like Cleopatra , but I can't seem to cope with a bath or shower at night anymore as I get the hot flush sweats and dizziness .

It's a real shame because I used to love a good soak or being massaged by the shower water before bed to ease the Pain.

Some day , fingers crossed , or I'll just have to move into the physio suite and live like a mermaid instead xx

[Purplecrow in reply to Blearyeyed]

Welll Damn! The simple pleasures seem to be slipping away from us... Valentine’s Day on Friday means we can splurge on decadent chocolates, and maybe my wife of 40 years will give me a massage😁

[Blearyeyed in reply to Purplecrow]

Just read your Hylands treatment and went to look for it , seems like another thing I can't find in the UK.

My friend gave me an amazing joint and bruise repair cream and nighttime spray from a US company but they say they deliver worldwide but it doesn't seem to deliver to anyone I know in the UK.

And then I was looking for silver thread socks and gloves to help with my circulation by a company I think were called Dermacare , US only via their Raynaud's Society again .

It's getting quite frustrating , I will just have to enjoy my manipulation by the physio on Valentine's Day and hope that my OH doesn't snore so loud through the film we plan to watch that I can't hear it. 😋😂😂😂😘

[Purplecrow in reply to Blearyeyed]

💜 I expect anyplace that sells homeopathic remedies will carry an equivalent product... might start with your regular pharmacy store.

Good luck. J

[Artnmusiclover in reply to Blearyeyed]

My daughter has been out looking this afternoon and cant find it ...we live in uk too, thought Holland and Barrett would have it. Put it in Amazon and no Hylands but came up with alternatives so I suppose they must be the nearest thing 🙂

[Blearyeyed in reply to Artnmusiclover]

Unfortunately , I've found by trial and error that sometimes only one brand will do.

Although you can have more luck with supplements by mix and match than you do with lotions or sprays you get used to .

[Artnmusiclover in reply to Blearyeyed]

Yes..I think I'll have to do the same ...I'll try what I can find thanks 🙂

[Artnmusiclover in reply to Blearyeyed]

I'm finding it harder to get in and out of the bath ...its gonna kill me if I cant have my evening soak in salts ...I really feel for those of you who have reached that stage x

[PMRpro Ambassador in reply to Purplecrow]

What's a bath? Haven't had one of those for the best part of 15 years ...

[Artnmusiclover in reply to PMRpro]

Flippin heck...I dread the day I cant manage my bath....its the highlight of my day 🥴

[PMRpro Ambassador in reply to Artnmusiclover]

My main problem is not being able to kneel due to injured knees - can't get out or up from the floor easily.

[Blearyeyed in reply to PMRpro]

I haven't been able to kneel straight down on my knees since I was young , the joints pop out if I kneel too straight or am in that position too long. My poor girls have the same problem too. Luckily you feel it going most of the time if you forget .

[PMRpro Ambassador in reply to Blearyeyed]

You are all just falling apart

[Artnmusiclover in reply to PMRpro]

What a nightmare...like there isn't enough to deal with. 🙄

[Purplecrow in reply to PMRpro]

Ditto that problem, i have a squishy kneeling pad that helps. Found in baby bathing supplies

[Purplecrow in reply to PMRpro]

🤣 the aqua center has a lovely hot pool, easy in and out.

[Pippah45]

One day hint guaranteed to give me restless legs is aspartame the sweetener now in so many things. Just a thought that you may be injecting this poison. Good Luck

[Pippah45 in reply to Pippah45]

One Thing!

[Artnmusiclover in reply to Pippah45]

Thank you for pointing this out, I had no idea. I will watch for it 🙂

[Pippah45]

It took me years to find out - going to concerts and having a soft drink before got my legs going very embarrassing when you are enjoying the music! More recently I had a G & T in a pub with a friend and off went the legs. I went to the bar tender and he had given me slimline tonic! Cheeky of him since I hadn't asked for it! We live and learn! And it is now in so many things thanks to the "sugar is evil" campaign!

[Artnmusiclover in reply to Pippah45]

Lol ...concerts have become a thing of the past for me...Its easier getting my old vinyl out...I keep being warned about the enemy that is sugar...I'm learning more each day 🙂

[PMRpro Ambassador in reply to Artnmusiclover]

I avoid sugar - and 99% of the time avoid artificial sweetners too. But I do drink diet tonic ...

[Artnmusiclover in reply to PMRpro]

I really do have to cut my sugar, I have a very sweet tooth, which has gone worse with high dose pred, I appreciate the advice, this is something the rheumy hasnt told me, thanks

[HeronNS in reply to PMRpro]

telegraph.co.uk/food-and-dr...

[PMRpro Ambassador in reply to HeronNS]

Unfortunately I can't access the Fever tree naturally light version here and the nearest to the Fentiman's costs about twice that! I detest the "full-fat" tonic because I don't like the taste, not because of the sugar. The amount I drink is unlikely to cause much trouble and there is no aspartame in the rest of my diet ...

[Artnmusiclover in reply to PMRpro]

All of this has made me so much more aware of checking labels...I have never done it in the past but even with the tonic waters I need to be more vigilant. It's a shame you cant get the Fevertree naturally light..thanks for the tips

[Artnmusiclover in reply to HeronNS]

Interesting! Thank you

[HeronNS in reply to Artnmusiclover]

It's fascinating to observe the subtle ways in which our food supply gets corrupted. And I make life harder for myself when I find something is environmentally damaging. I had become quite fond of avocadoes, but all ours come from Mexico which is now being deforested in part to make avocado plantations, and one area under threat from illegal logging is the protected forest in which the monarch butterfly winters. I can't eat avocado any more. Or anything with palm oil because of the destruction of orangutan habitat. Or any shrimp from areas where the mangrove forests are destroyed to make shrimp farms (which only last a few years and then the site is abandoned, but the mangroves don't return). The list grows ever longer but unless a lot more people become aware and the boycotts meaningful there will be no improvement.

[Artnmusiclover in reply to HeronNS]

I am a huge fan of anything environmentally friendly and only wish more people were aware of the facts. On the flip side of you making life harder for yourself, I take my hat off to you for doing what is morally right. I too like knowing what should be openly shared but isn't and suppose any amount of sharing this knowledge, however small, will make a difference 🙂

[Pippah45 in reply to Artnmusiclover]

I don't buy into the "sugar is enemy" stuff. I read a horrifying report about aspartame. It was first developed as a chemical weapon as it works on the neurotransmitters. I also read that they trialled a diet for American Airline Pilots that included Aspartame. At least 30% of them developed epilepsy!!!! It was of course a low Sugar diet.

My earlier life would count me as a sugar holic at least 4 if not 5 spoons in my coffee. Now I hardly touch the stuff but I definitely don't touch chemical sweeteners of any sort. Label watching is now something I do a lot of. Anything that is "sugar free" is likely to have a chemical substitute of some sort.

Moderation in all things - including moderation itself.

[HeronNS in reply to Pippah45]

Added sugar is definitely not a good thing and shouldn't be consumed every day. But it is far preferable to artificial sweeteners.

[Artnmusiclover in reply to HeronNS]

Definitely something I did not know! It's terrible how so little is known until you're in a ill state and research...thank you!

[HeronNS in reply to Artnmusiclover]

I just did a little reading about aspartame and it is implicated in a number of health issues, including cardiac, and there is no evidence that it provides any benefits, even for weight loss or helping type 2 diabetics.

[Artnmusiclover in reply to HeronNS]

I'm going to look at it too, I have just received a diabetic clinic appointment on the back of recent bloods. What a great site this is..full of the best advice ..thanks

[Artnmusiclover in reply to Pippah45]

Wow, scary stuff! My daughters use artificial sweeteners all of the time. I need to check Canderel ...thanks again

[Hidden in reply to Artnmusiclover]

Try stevia or truvia... So far they haven't been dissed too much.

[Artnmusiclover in reply to Hidden]

Thanks...I will 🙂

[Purplecrow in reply to Pippah45]

only comment here is that my RL was present 50+ years ago...long before the Sweetner revolution. However, ... no doubt, added chemicals do contribute to the toxic slurry that is presented to consumers in all sorts of “temptations”. 🙏🏽

[Pippah45]

Good luck talking them out of it! My daughter does listen but I have tried with others. I think the manufacturers of all this chemically sweetened stuff need to be hung drawn and quartered - it's immoral what they are doing. My naturopath friend thinks artificial stuff like the sweeteners is stored as fat - despite the marketing blurb. Americans have been getting more and more obese since the start of the sugar banning fad!

[Artnmusiclover in reply to Pippah45]

I so agree! It doesn't seem right that they're not held accountable for producing such damaging rubbish ...massive thanks for raising my awareness 🙂

[PMRpro Ambassador in reply to Pippah45]

Not sure it is stored as fat BUT what does happen is that the body perceives "Sweet" and immediately produces insulin to deal with the rush of sugar it has been conditioned to expect as a result. No sugar comes and so there is a load of insulin floating around looking for something to do. That is the root of insulin resistance as cells learn to ignore it and it also means any carbs available are turned into fat and deposited in the expected places. So far from reducing the risk of Type 2 diabetes and weight gain - they add to them.

[Artnmusiclover in reply to PMRpro]

Wow....that's worth knowing! Especially as I have just been diagnosed diabetic aswell. Ive been doing everything wrong....Thanks for the sound advice 🙂

[Purplecrow]

Hi, my experience...

no....zero.. !!! caffeine... beyond morning cup. Includes chocolate🙁

Also,

Hyland’s brand homeopathic remedy, called Restful Legs.

Say what you will, it works for me100%

I have been deviled with restless leg since my 20’s, (make that 50 years)...

Above is my resolution, which in past has included narcotics, etc.....nothing works better, and non addictive. Plus fairly inexpensive.

Kind regards, Jerri

[Artnmusiclover in reply to Purplecrow]

Thanks for this...can I buy it at Holland and Barrett? I'm going to order some 😊

[Purplecrow in reply to Artnmusiclover]

I found at local health food store, but most pharmacies and larger groceries carry. No prescription required, and fairly inexpensive.

[Artnmusiclover in reply to Purplecrow]

Great...thanks 😊