The above drives me crazy about 4 in seven nights .
I’ve also stated jerking in the night , it’s just one jerk but can happen a few times a night .
I’m writing this has I just wondered how many other lupus patients suffer this crazy feeling , it does have to be night time either , I can get it in the day time has well . I cannot remember having the sensations in the mornings .
Just wondering if there is any link here .
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I get restless legs I've just had 2 bad nights sleep as a result.....mine is due to b12 deficiency anaemia and it gets worse when my Injection is due.a couple of days after injection it goes.i had my Injection on new years eve so fingers crossed it should go tomorrow.🤞
Existing research points to an inflammation/immune system dysfunction link with restless legs syndrome. Researchers discovered higher restless legs syndrome prevalence in lupus patients than others. Findings suggested anemia was associated with more common, more severe restless legs syndrome in lupus patients.20 Jan 2016
rheumatologynetwork.com › a...
Anemia Linked to Restless Legs Syndrome in Lupus ...
Hi Spanielmadlady
Thank you for this link .
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Hope you get some relief soon x
Dear Spanielmadlady
Hope you do feel better with the your legs tomorrow , just thought I’d mention , I cannot seem to find the information on the link you sent , are you able to check this at all .?
🦋♥️
Thank you.it will settle then start again in about 7 weeks 🙄.Google restless legs syndrome and lupus.should be first article x
Hi Willow1414, I’ve had this from time to time and a daily magnesium supplement helps reduce the symptoms. Hope you get some relief from it soon x
It’s worth having your vitamin D level checked, this can also be a cause of RLS. I empathise with you... it’s a horrible condition. Drinking tonic water may also offer some relief - not sure whether it matters if you mix it with gin 😂😂😂
Dear HighMaintenace
Yes I’m on prescribed VIt D , and still a little under , Tonic water sounds interesting , I think it’s the quinine in it.🦋❤️
I have scleroderma and get this. I’ve found that some medication makes it a lot worse such as amitriptyline and phenergan.
Hi Willow I got restless legs immediately following my hysterectomy 19 years ago. It drove me mad initially. Now I self inject B12 for Pernicious anaemia and take 2 Garbapentin at night. It is still there and can happen at any time but it is definitely worse in the evenings and if I have oedema in my feet and legs. I hope you find something that helps you xx
Hi CecilyParsley
I am starting to get swollen feet lower legs recently more than before , and I just cannot seem to get my feet up to temperature . I do take folic acid , think I’ll start taking Magnesium more often . It’s a nightmare though at times , as you know , I’ve heard there is also a genetic link with irritable leg syndrome , my mother had it and my sister had it . I do take preganbalon , think I’ve spelt it wrong 🙄. But try to push through without at times, really hate needed all this medication . 🦋❤️
It is miserable isn’t it? I sleep with my legs raised as far as my adjustable bed will go. It really helps with the oedema. Sometimes my feet are so swollen there is no articulation in my ankles and my balance is affected. I do hope you find something that helps you xx
Hi Willow, I do suffer from time to time with jerky leg I don't think it is rest leg syndrome, my legs are not restless and it is only one leg that jumps and only in the thigh also it is only at night in bed
Hi Gery , yes it’s quite strange it tends to be my left leg jerks the most , irritable legs in both , and full body spasms/jerks of which I find are almost like a fit . I did mention it on my last visit to rheumatology ,he seemed puzzled , although he was part of the research team , of which there was nothing to say on my appointment letter that my appointment back in Nov was with the research team , other wise I would not have gone , I more or less refused to help anymore , has I felt tricked into thinking this was my long over due appointment . He then said we can teat this appointment has my a usual appointment , was quite shocked by it all and very uncomfortable . The whole appointment I found was a waste of time , during a pandemic has well . Don’t now know when my next appointment at all .
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Hi Willow, strange it is also my left leg also full body jerks occasionally my husband suffered with his knees so we ended up having separate bedrooms or no sleep. I hope you find an answer. Kind regards
I have a form of restless leg syndrome. Also SLE among other things. Linked to my restless leg syndrome I have sleep apnoea. My consultant prescribed Ropinerole. This has really helped with the restless legs. Hope this helps x Best wishes to everyone, here's hoping for a better year xx
Hi Willow - I’ve had this for years. I use Olbas Oil - rubbed into knees and even the soles of my feet. A good help too is Deep Freeze - they make cold patches - cut them in half and stick them on your feet - they last up to 12 hours and don’t smell, unlike Olbas. They also do a spray. Good luck
Dear Cas70
Olibas oil I think I’ll try and see if it helps . I couldn’t stand the deep freeze , I have raynards and suffer with very cold extremities , really Carnt stand anymore cold at all , but thank you fir the advice , my mum us to call cold hands pastry fingers , apparently good for making pastry 😄🦋❤️
Hi Willow - what about Deep Heat ?? Also, I have had relief by using Magnesium spray on my legs - try that.
Hi Cas70 , I didn’t know there was such a thing has magnesium spray . I’ll google where I can buy from .
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Holland and Barrett, Amazon, try Vit D and B12 spray too, if you don’t already. I get sick of pills and vit D was the first thing they put me on.
Hi Willow. Make sure they check a ferritin for iron deficiency. This is a very common cause of RLS. If iron studies are normal, you could try a medication. As Yvette noted, ropinerole or pramipexole are first line therapies and have been shown repeatedly to help with RLS. For those with anxiety, depression, mood disorders, gabapentin or pregabalin are useful alternatives.
But please have iron studies done before starting a medication. Since SLE causes anemia for some of us, it wouldn’t be crazy to ask for iron studies. It’s also standard of care over here in the US for RLS sufferers.
Hope you find relief soon! ❤️xx
Thank you for all your reply’s ,
Nice to know I’m not alone with this one .
We would make a great football team .
😂🦋😃
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