Does anyone get painful calves and feet at night.... - LUPUS UK


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Does anyone get painful calves and feet at night. So bad tonight I can't sleep. !!

Sjink profile image
17 Replies

Think it may be restless leg syndrome? Wondering why I forgot to mention this last rheumy visit ... It's driving me bonkers. Luckily no work tomorrow.

17 Replies

Hi, yes, get this all the time. At the moment my calves are numb, and normally have a lump in them. Feet have the flitting pains either in the balls or towards heels or both, with the burning in legs and feet. It is so annoying. I was told years ago that this was restless leg syndrome, but have not been advised recently. I stick my legs out the bed, and try and rest the calves on the edge of the mattress, which seems to give some relief. What as shame for you, I hope you get some kind of peace from it for a while. Yes, mention this to rheumy, make that the one thing you mention (as they never seem to be able to concentrate on more than one thing that you mention in one visit!!!). Or maybe even to your GP.

sending hugs xxxx

Bonnie39 profile image

Another symptom I'd not associated with this condition. I'm learning so much on this journey.

Sorry to hear another person suffering this pain too :-(

heda123 profile image

Hey I suffer from leg and feet pain every night too. I've never heard of restless legs syndrome. Its so painful that I have tears in my eyes. My rheumy just ignored it! I use hot water bottle and apply some pain balm on! And pain killers is my last resort.

AnnieKhan profile image

I also get this all the time. Nights that it's bad I put a pillow between my legs and it seems to help ease the pain.

Sjink profile image

Thanks everyone. I rest my legs up in a pillow when lying flat as my heels "burn" and it feels unbearable to put them on the mattress. My calves burn and there is a deep ache as if my shin bones are having the muscles pulled off them (sorry horrid, description). This symptom comes and goes. I walked too far yesterday to collect an undelivered parcel. My own fault but it felt good to be independent and out and about seeing a different area of the city. Payback now. Have woken with sinusitis too. Happy days. I am on minimum meds right now - came off steroids because of osteoponea (spelling) and rely on mepacrine, pain meds, aspirin and occasionally NSAIDs. Not sure it's enough now I am having to work 3 days a week. Anyway lack of sleep making me feel sorry for myself. I will get breakfast and then try to get more sleep. Thanks again. I find this site very supportive x

Sjink profile image

Oh and yes Goingaroundthetwist. It's so hard to say everything at hospital visits. My rheumy is fantastic but he has his agenda to work to. Also I think next time I'll struggle in without being full of pain meds, it will remind me how rough I feel when they aren't in my system!!

LupusKaren profile image

Yes I do suffer from this immensely annoying and quite distressing problem, speak to your medics about this. My Rheumy put me on Quinine tablets, and they really have helped. Amitriptyline is felt to contribute to this problem, particularly at higher doses.

Sjink profile image
Sjink in reply to LupusKaren

Thanks I did read about quinine (in the early hours today) and think will try tonic water til I see my gp. I have severe cramps sometimes and quinine supposed to help that. I could not take higher doses of amitriptyline and would worry on low dose as allergic to tricyclic and SSRI meds they flare my lupus symptoms. Thanks again x

tintin49 profile image

I thought that I had sciatica. which sounds like restless leg syndrome..i have been having a fearfull time with it. had acumpunture and my legs are very very bad now. night is the worse. on gabapentin just started so take 2 a day and hope for some relief

Sjink profile image
Sjink in reply to tintin49

Be good if gabapentin worked for you. Do let us all know xxx

tintin49 profile image

I will let you all know. i'm off amytriptilin worked very well. made me sleep but it can affect your heart and mine is tricky. so am off it. gapapeptin is better for the heart. I am lucky under the pain doctor consultant. hes by far better than any of the lupus drs. he understands pain and its long term wearing you down. he explained its a cycle. pain no sleep, body waers itself out through lack of sleep. then you get really tired and the cycle goes on. he was the only dr to recognise how bad I felt. said I also had fybro I have been trembling for a couple of years due to nerve pain and he recognised this staright off.

I went to my doctors and he said the lump was varicose veins and the brown patch was where it had bled - the fact I KNEW what the brown patch was (I walked into a coffee table 6 years ago and the bruise never went, that happens to me a lot) Plus the fact I had the same pain in the other leg as well, just no lump. He said sit with my legs up. The Last doctor I mentioned it to told me to walk more !!!! aaaarrrrrggggg. And if one more doctor says it's my age I swear I will HIT them with my walking sticks. I'm only 66 for gods sake, that's not OLD. Oh I get so frustrated, 'They' have been saying all my pains was my age from being 15, now when we trace my illness back we Know it was the beginning of Hell.

Sjink profile image
Sjink in reply to hazelHollingsworth

Don't you just love 'em. My first rheumy told me to go swimming and build up muscles! This when I could barely walk, had agrophobia and it later transpired mild CNS symptoms that were contributing to depression and being very anxious around people ;-). I have long standing brown marks where I had bad bruises and raised painful lumps where I had knocked my legs. Better now off steroids. And my attempt to walk more - lovely tho it was at the time - had me almost crying last night with pain and I deal well with pain. Oh well. I still love my wonky life xx

here2help profile image

Hi all this is a general reply

Diet&lifestyle are the beginning&end of your 'problems'

'Syndrome'?Sounds like they just came up with an excuse to sell more drugs.

Become an expert at being happy

-study it.Get out of bed & cycle hot&cold water on affected area,pee on it,ACV, a n y thing!

End the victim mentality now

What should a person do when they have a cold? Tell NO ONE

-energy goes where attention flows(besides YOU DONT CATCH A COLD-YOU EAT A COLD !)

daisyd profile image

Hi I get restless legs awful, I don't know what to do with them sometimes, I see you say you have sticky blood,? Are you diagnosed with Hughes syndrome and are you having any medication for it

My haematologist tested my blood for low iron it's called a DAT test it showed I had low iron stores, I was given iron medication as have improved quite a lot.

The DAT test is not used very often to test for anaemia it's usually HB, I don't really understand it but I know you should consult you doctor before starting on iron as it might be bad for you. Sorry I hope nobody has said the same thing

Sjink profile image
Sjink in reply to daisyd

Thanks Daisyd. I shall mention it when I see the doc x

puffyface profile image

Yes!! It's keeping me awake. I have a Sjorgrens/lupus overlap and think it's either muscular or small nerve neuropathy? Last night I couldn't sleep even with a sleeping pill. It's like a throbbing growing pain in my legs and thumping pain in my feet....almost like they've been hit with a baseball bat and left to throb. I'm starting to get it in my thighs too and pain in the outer bit of my hips, towards the front. It's driving me mad...don't know what to do. Also burning hands and feet?

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