The last few nights I’ve had really bad pains and burning in my feet, currently seeing a podiatrist whose decided to refer me to musculoskeletal dept for further scans as they said from a biomechanical perspective there’s not much she can do until scans are done. Does anyone else have issues with their feet burning up? It’s not like I’ve been doing much these past few days either, I’ve been working from home and resting a lot because the fatigue is killing me. Got mouth sores too so maybe it’s a new kind of flare but not sure. If anyone else gets the same please let me know, don’t want to go another night waking up multiple times a night with this pain and burning
Burning Feet waking me up: The last few nights I’ve... - LUPUS UK
Burning Feet waking me up
Hi Leenie0811, I have similar experiences with my feet burning, it starts of cold, I wear bed socks, at some point in the night , I kick them off or they just come off, then need to stick my feet out of the covers. But apart from that I get a sharp pain in my heels also,from laying flat on my back.My gp doesn't seem to know what to do,so I have had to do a self referral to podiatry and am now awaiting a reply.
I am very interested to hear your feedback on treatments as well as responses from everyone. Big hugs 🫂 🤗
Yours sound so similar to mine! I got referred to podiatry but after they examined my feet they have decided to refer me to the musculoskeletal team for scans because movement was okay. The podiatrist said there’s nothing they could do from a biomechanics perspective until scans have been done.
Thanks for your reply, I now feel even more determined to be referred to people who manage and investigate why, how ,if, treatments and so on! 😕🫂
Let me know how you get on! Honestly it’s draining but pushing and getting the tests works out in the end ☺️
Yes, get the burning feet - my feet hurt but from inflammation in tendons. Investigation is always good. Have no tips or tweaks as I can generally manage mine but removing covers. Good luck
Ah this sometimes helps but at the same time it doesn’t it’s the luck of the night! Hopefully the scans they do will be able to tell more I hope
Hi Leenie 🤗 Yes I have experienced the pain you've described. My rheumy said that it's neuropathy or maybe erythromelalgia (not sure of the spelling?)
I'm prescribed low dose amytriptiline for nerve pain. I started on 10mgs at night n have recently been increased to 20mgs.
Side effects for me were increased dry mouth..I have Sjogrens..so I take a bottle of water to bed and sip it during the night as I wake up frequently. The other side effect that can happen is drowsy/hungover feeling in the mornings. I take it 12 hours before I need to be awake (6am)..I take amytriptiline at 6pm.
Hope this helps you..it is awful!! 💜🌈😽😽Xx
My mum has that to take on a night time it looks lethal the way she falls asleep after it! Can’t imagine how the dry mouth feels I already get that from having allergies and sleeping with my mouth open 🙈 (forever having some kind of blocked nose) I’ll make a note of what you’ve said and see if that lines up with what I’m experiencing. Still waiting to hear back from the team doing the scans for podiatry.
Hi Leenie. I also suffer from burning feet at night (and have raynaud's & small fibre neuropathy- the holy trinity of autoimmune feet it seems☹) and it really made sleep so difficult. My rheumatologist prescribed a fairly low dose of gabapentin for it, which has made such a difference. It's not gone completely but enough that it no longer wakes me up and I don't have find a cold floor to walk on at 3am. Like krazykat said about amitriptyline, I take it before 8pm otherwise I'm a bit woozy the next morning. Maybe worth asking about? Really hope you can find a solution. It's rotten. X
I’ve heard of this but didn’t realise it made you sleepy/woozy? I have Raynaud’s and I take nifedipine for it in the morning and night time. I did wonder if it was that but it doesn’t happen every night or morning when I take the meds so ruled that one out. I usually have a pair of normal socks on, fluffy socks and boot slippers just to keep my feet from going cold in the house! It’s an absolute pain! Xx
Had burning sensations in my legs down the front and occasionally in my feet. The rheumatologist said it was nerve pain and I take gabapentin at night both to help with that and sleep. Hope you find something to ease it xx
Do you find it helps? I’ve just been prescribed it for my legs that burn and tingle. Do you take it permanently or just as and when?
I take it every night an hour or so before I go to bed just one 300mg capsule. Must be 3 years now. I could take more but I've stuck with just the one capsule. I never take it in the day as it was prescribed as much to help with sleep as with pain.
Maybe it is nerve pain, that’s what the general comments are here. Not sure if it’ll show on any of the scans but least I have some more ideas now than being in the dark about it, this community is amazing 💛
Hi Lee ie, I have been experiencing this, it's relatively new although I have had noughts of hotness in my feet. Now my feet are red and swollen, tight and painful. My hands are similar but not as hot or swollen. The pain in my feet stops me from sleeping and wakes me up. Some mornings I'm struggling to walk. Hoping my next rheumatology appointment is not postponed any longer. I have raynaulds but normally this is just in my hands. I do find the only way I can get to sleep is to put my feet in a cold bath and sometimes I put my hands in too. It's not the best solution but works for me. Let's me get some sleep. Also noted that I have over lock down exercised less and less. If I do managed to do something for 5mins the symptoms reduce. I wonder if you could try some ankle rotations anf flexes see if it helps?
Feeling your pain and frustration, thinking of you 😊
You sound like me at silly o’clock in the morning running cold water on my feet in the bath! Oh it’s the worst isn’t it? I have Raynaud’s too but this burning hasn’t been there all the time it’s so strange, I hope you manage to get to see your rheumatologist soon xx
Note my diagnosis is Stills Disease which manifests as RA for me.Yes I get this but don’t know why or have a cure, interestingly it is only one foot! I suspect it’s a nerve thing but my GP is not interested. I have my first ever podiatry appointment next month and I’m hoping they may know.
Fingers crossed for you that they manage to help xx
Hi Leenie0811 I’ve had burning soles of my feet and the skin went brittle and peeled off. It went on for a while and drove me mad but it has actually got better on its own, didn’t report it to anyone
Oh wow that’s so unusual, I’ve heard of people using those foot masks to peel their dead skin off but never just on its own, I wonder what caused that? Hope your feet are okay now though xx
I used to get hot, red rashes on my hands and feet, sometimes on my arms and legs as well. They did a bunch of neurology tests on me (not just for that, I also had cognitive issues, but they wanted to check out my peripheral nerve conductivity as well). All tests came back normal. My rheumy put me on hydroxy 400mg which has all but eliminated the rashes. All the best with your investigations—I hope they clarify the cause of the problem!
Yes thanks, they are ok now but interestingly I had it to a lesser extent last summer but never connected it to Lupus, I thought it was just heat and flip flops!
I saw some bamboo compression socks advertised that apparently so hot n cold so if you are hit they are cold. Maybe worth an investigation
I have burning feeling in my left thumb and index finger but mostly my thumb and it comes on at any time during the day but not at night.