Nightmare nighttime legs 🦵! : Hi lovelies Just... - LUPUS UK


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Nightmare nighttime legs 🦵!

Tiggywoos profile image

Hi lovelies

Just wondered if anyone can relate to nighttime leg pain ? It’s as though someone has tied a band around both calves .. different to RLS . It drives me insane … tried stretching ,aspirin , magnesium, praying 🙏 !

Only way to ease it is to get up and move .

Any of your always appreciated helpful thoughts on a postcard 😊.

Take care and big hugs to you all xx❤️

Ps amitriplin used to help a bit but I realised it didn’t stop pain it just knocked me out

19 Replies

Have you tried hanging your legs out of bed?

Tiggywoos profile image
Tiggywoos in reply to PMRpro

That does help for a bit .. then they hurt again 😔

PMRpro profile image
PMRpro in reply to Tiggywoos

If it were me I'd ask the GP to check the blood flow in your legs - as a start they do BP in arms and ankles and look at the ratio. It is possible that something in your position is interfering with blood flow. Do you ever get calf pain when walking?

Tiggywoos profile image
Tiggywoos in reply to PMRpro

It tends to be more at rest which is odd .. . When walking it tends to feel more like bone pain ...

PMRpro profile image
PMRpro in reply to Tiggywoos

How strange ... Though advanced blockages of arterieal blood supply can lead to resting pain - why I asked about hanging your leg out of bed.

Tiggywoos profile image
Tiggywoos in reply to PMRpro

They are definitely relieved by movement

Ohh Tiggywoos. I’m sorry you’re having such a horrid time with leg pain! I can relate, a couple of months ago I was getting awful pain in my calves every evening… no change in my routine, diet, activity etc. It just came out of no where. Like you I had to keep moving, the other things that helped was keeping my legs raised… and leg massages from my husband! I guess that’s does something with the blood flow.. The pain did go away by itself after a few weeks, hoping yours will calm down soon x

Tiggywoos profile image
Tiggywoos in reply to Solfrid

Ah thank you Solfrid . I think you’re absolutely right about it being a blood flow issue as it’s worse if I’ve been on my feet a lot . We are all such medical 🏥 marvels 🙄😂. Take care ❤️

Hi there. I have similar but in my knees and shins more than calves. Also hands and arms. I’m sure it’s blood flow with me because when I get 3 monthly Iloprost infusions I have to take 30mg codeine and maximum paracetamol or my leg and jaw pain make me want to cry.

Iloprost is a massive vasodilator so it makes sense to me that this resting pain must be circulatory/ vascular - although I do also have small fibre neuropathy, but my skin isn’t burning, it’s more like intense toothache in my legs and hands.

It relieves once I walk about. Someone did tell me that it could be dehydration or low sodium and I did notice my sodium was at bottom of range a month ago. Could it be this?

Tiggywoos profile image
Tiggywoos in reply to 282523

interesting question about the sodium and being dehydrated . I do drink loads especially when I am on steriods as they make me super thirsty all the time. I know tonic can help with cramp but it doesn't sound like yours is cramp either. It makes sense to be a vascular thing as mine are definitely worse resting, are yours the same?

I'm sorry to hear you have horrid pains. The fatigue and all the other nonsense is enough to deal with without bone pains too. Have you tried the deep heat or olbas oil? I'll give them a go and let you know. Take care big hug x

282523 profile image
282523 in reply to Tiggywoos

Yes only when resting actually. Also after standing still for any length of time. I have to watch what I use topically as also have erythromelalgia and Raynaud’s - but only arthritis is in my spine and hips not knees so don’t think it’s MSK. Steroids don’t improve it either but cold and heat - bariatric changes and likely autonomic stuff all impact a lot on the resting pain and weakness. Had it for about ten years now so should be used to it. Steroid injections do help my mobility and improve the muscle and joint stiffness but not this resting toothache in peripheries. My rheumi thinks it’s small fibre neuropathy going deeper into the tissue causing autonomic damage and severe gastroparesis but the neurologist thinks it’s a vascular thing!🙄 🤷🏻‍♀️Xx

Try rubbing Olbas Oil over your calves. Give it a few minutes. Or try the opposite and try Deep Heat. I use an awful lot of simple remedies - good luck

Tiggywoos profile image
Tiggywoos in reply to Cas70

Thanks Cas ! I rubbed the ankles really hard last night before bed and it defo helped ! I’ll get some deep heat later . Thank you 😊 x

Hi Tiggywoos, yes I get this a lot. I sleep with my legs raised, it takes a while to get used to this position but I am comfortable with it now. I take two Garbapentin every night at about 10 pm which eases the nerve type pain and allows me to stop jiggling my legs to relieve the pain. I tried Amitritalline years ago and it did not work for me. I really hope that something people here have said helps them actually helps you lovely. It is miserable and interrupts sleep xxx

thank you so much for replying and it helps to know the ami didn't work for you either. I should try the raised legs as I often end up lying on the landing with them up the wall! Poor Tiggy thinks i've lost the plot but he never minds being woken up at 3am as it normally results in him getting some biscuits lol.How are you doing hun? Sending big hugs xx

The adjustable bed was the best thing ever for me. It means I can raise my legs ridiculously high so the odema drains off and my circulation is better in the morning.I drive Neil mad constantly having to jerk, twitch, jiggle my legs and they used to wake me up constantly jerking as I tried to sleep. Up in the air they stop twitching and the pain eases. It takes a bit of time to get used to sleeping that way but I got used to it. When I tried the Amitriptyline my then Rheumatologist did not believe that it wasn’t helping and just kept upping the dose, eventually I said no more. I suffered badly for years with lack of sleep because of it but now I have deep sleep even if it is not as long as I would like xxx

I might hang around the local boots chemist in town... i'm sure I could swap some anti virals for some gabapentin😂🤪. Apologies for being cheeky, just trying to make us smile 😉xxx

If you need any antibiotics and prednisalone to swap for them, I am your gal 😉 xxx


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