Does anyone else suffer from burning hot feet before/ during or after a RL episode?I am often woken up by my feet on fire even before the onset of the muscle spasms & are so hot their painful.I have to get up & usually soak them in a cold Epsom salt footpath & then half hr on vibrating footpad(Revitive) & this normally helps them to subside enough for me to go back to bed & grab a few hours sleep.
Unfortunately this doesn't always work so if anyone has any other ideas or knows WHY it occurs in conjunction with RL I would be mist grateful for any insight
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SwimLyn
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I agree with Madlegs. This sounds like neuropathy. My feet can feel cold to the touch but I think they are on fire! I also have severe RLS and certainly the two complaints together are anything but comfortable. I have no magic tips for easing the burning feeling. I often sleep with my feet out from under the duvet!
I was suffering from terrible painful feet and lower legs I thought it was related to my back however I was concerned it was neuropathy. Then it was gone for some months we were travelling for nearly 3 months the last 4 weeks it returned with vengeance .
The pain was so bad it was keeping me awake nothing relieved it , even tried staying off my feet .
When I travel I cannot take all my natural things I take with me . Within 3 days and nights of resuming my oils 1 tbs Gundry olive oil and a table spoon of sesame oil the pain was total resolved .
I can’t say this will work for anyone else , my only thought is perhaps the oils help to coat protect the nerve endings.
Hi Shumbah - Thank you for much for responding. It is lovely to hear from a friend so far away. I am so glad you have found relief from your pain and I hope it goes on helping you. Unfortunately I cannot take this amount of oil as I am already on two types of blood thinning drugs and these oils would contribute to the anti-clotting effect making a severe bleed more likely. Hope you and your family are well.
One of my sisters is the same she can’t take oils , I must admit I do not enjoy swallowing them 😝
Im still on my way back , it’s somewhat of a recovery.
I can’t believe I find a solution and bang Im with another complex health hurdle and yet from all the bad there is still something to learn.
The craziest thing the strong antibiotics really has had a very interesting impact , weirdly no reflux, no nightly night asthma and the biggest thing nearly no Buprenorphine. 2 mg tablet lasting 4 to 5 days.
No side effects that others would expect from 5 months on strong antibiotics.
So I’m not sure if that is an indicator of SIBO type condition but some doctors don’t believe in SIBO.
Our bodies are so uniquely different , having such a large collective of people is invaluable for treatment of RLS and other complex conditions we seem to be subject to.
Your findings with the antibiotics are amazing. Our bodies are so complex and each one different. I had pre-orbital cellulitis last September and then urinary tract infection and was treated on high doses of strong antibiotics combining two on both occasions (I am allergic to penicillin). They have messed up my lower digestive system big time and caused severe migraine headaches. I never suffered from constipation in 81 years and now I have to take powders daily for this. It seems awful that in trying to correct one thing the treatment causes another.
I wish you well in your on-going recuperation and I also send many virtual hugs.
Thank you for the link-I checked it out & it seems I do have a couple of underlying health conditions that might be contributing to the 'flaming feet' problem but until I see the neurologist will just continue with my regime of footbaths & vibrating footpads !!
My burning feet arrived when RLS really kicked in my late teens and early 20's. Saw a neurologist, wasn't neuropathy. Tried all sorts of treatments. A few years later when I was put on my first antidepressant for depression a wonderful side effect was the burning feet went away. Over the past 30 yrs the burning always came back when I went off any antidepressant. Some worked better than others. Currently i am on 20mg Cymbalta that relieves the hot burning feet nearly entirely. Yes I know it is on the naughty list for RLS but my opiods cover any issues it seems. It's a toss up what is worse for me, untreated RLS or untreated hot burning feet. They both result in little sleep untreated. Cymbalta is approved by the FDA as a treatment for neuropathy. If you try Cymbalta you will know within days if you get relief to your burning feet. You will also know pretty quickly if it worsens your RLS. If it dramatically helps the burning feet consider upping your RLS meds to compensate. Relief from both is necessary for me to function.
It’s fascinating that an anti depressant stops the burning feet. It seems to suggest that the burning feet aren’t related to RLS because the RLS continues but then again there is some sort of relationship because the antidepressant makes RLS worse. And of course you have noted that the burning feet normally precede RLS. I look forward to the day when someone can explain all this.
Hot feet was were it all started for me. My feet would burn so bad I would have to put my feet in cold water at night sleep with an ice pack and sleep on my leather couch so I could move my feet onto the cold surface. This began after my first pregnancy and progressively got worse. My feet then started to twitch and pulse in pain and constant urge to move my legs. I lived like this for 10 years circulation/bloods was often checked with no cause of why this was happening until I was prescribed Ropinerole which really did change my quality of life. Basically I could go to bed and fall asleep with no hot feet, urge to move and pain. I’m thankfully still ok. I have no pain heat etc but can still feel it all happening (if that makes sense).
So I saw this on my email and felt compelled to share. I don’t have RLS but have an extremely rare condition called Erethromyelgia. It causes extreme heat and redness of the feet or hands in some cases and it’s excruciating. It feels like they are on fire. My treatment from podiatrist is low dose asprin and elevation of the feet or foot. Hot weather or wearing socks can trigger. I used to soak etc and that can sometimes worsen. I prop up and put cold pack under my foot so the cold radiates but doesn’t touch the foot. I take the aspirin and another pain medication, usually tramadol and it will improve by morning but can still be sore for the next day. It’s worst at night because there is nothing to distract and nerves are alive at night!! I hope this helps!
Me too…my Erythromelalgia (EM) is secondary to lupus, small vessel vasculitis, sjogrens & what seems to be scleroderma. Am 70 & my lupus was infant onset. My EM came on in the early 1990s & is secondary to childhood onset progressively severe Raynaud’s, which has done so much damage to the soft tissues in my lower legs & feet over the decades that I actually have officially segued into “severe Raynaud’s ischemia reperfusion injury” I qualify for long term on scleroderma protocol highest dose daily sildenafil (aka viagra), which helps just enough to keep me sane. My worst RLS-like manifestations come on every evening & go ballistic overnight alongside flaring EM swelling + fiery heat …both my feet & hands are aff3cted
My rheumatologist refers to my restless legs as ‘clonus’ secondary to L 4/5 radiculopathy + general degeneration of lower spine + Neurophysiology-diagnosed sural axonal peripheral neuropathy. So my advanced autoimmune version of small vessel vasculitis & peripheral neuropathy + the lumbar radiculopathy, the lumbo sacral degeneration & the severe Raynaud’s = severe Erythromelalgia 24/7/12 misery with RLS-like leaping & jerking limbs the icing on the cake. But over the decades I’ve put together a big box of magical self help tricks that help with this combo of EM & RLS-like clonus …& I feel very lucky my consultants are trying hard to help me. + I feel very glad to have found this wonderful forum
I was having what I thought was a recurrence of hot flashes, but it would start with an RLS feeling in my feet( different from my usual sensation) and then I would get a strong hot flash. This would happen 3-4 times a night and woke me in addition to the break through RLS I was having while on Prami. I then started Buprenorphine , but was still on the Prami until I established a Bup level. All those symptoms stopped immediately. Once I was off the Prami I have had some recurrence, but not like before. Not sure if this is some rebound from the Prami withdrawal,( off for 8 weeks now) a new RLS symptom not covered by Buprenorphine alone, or just strange hormonal events
Hi everyone. Just found this forum this morning. I've had hot burning and extremely irritable feet, on and off for years. I think it started when I was about 35 years old (ish). I'm 50 this year.
I visited my GP around 5 years ago, and as far as I remember, he took blood tests, and all came back fine.
I told my GP at the time that I thought it might be RLS. Not sure if he tested for anything else, but he certainly didn't mention anything else.
I haven't revisited, as I can go for months without any symptoms, and then sometimes the symptoms only last for a night or 2, sometimes a little more.
However, for nearly 2 weeks now I have suffered really badly, and not getting much sleep at all. I'm a HGV driver, and do long hours, and I'm getting to a point now where I need to resolve this as a matter of urgency.
I don't think it's linked, but this has flared up since starting "Dry January "
Maybe alchahol IS good for you lol.
I plan on booking back in with GP, but I don't hold out much faith, as the 1st questions he always asks are "so what do you think it is" and "so what would you like me to do". Infuriating, I know.
So anyway, does anyone have any home remedies I could try?
And I know I need to ask a professional, but does this sound like IRL or the neurological thing I've seen mentioned on here?
I've tried a "cold" waterbottle which does help, but only to a degree.
I've also tried magnesium spray on my feet (recommended by Holland & Barret), but that didn't help in the slightest.
A foot massage when it flares up helps sometimes, but is helping less lately.
Thanks for any help and advise.
Take care everyone, and I wish you all the luck with your sleep.
Hey SwimLyn, Yours is an older post but I wanted to share with you my experience with burning feet. I also have severe RLS and for the last 8 years my feet have burned. This burning gradually moved to my legs and thighs and sometimes even my arms and parts of my face. Recently I have withdrawn from the DA I had been taking and started taking Buprenorphine. The burning has almost completely disappeared thank goodness. I do have recurring episodes but nothing like before Buprenorphine. Also, when I reported to my doctors at Scripps in San Diego that the burning was getting worse, they told me that I should consider it to be another manifestation of RLS. I know we are all different, but this has been my experience. I hope the burning is behind me and yours is behind you as well. Good luck. Rivers
Thanks for your reply Rivers W & feel after reading your story that the burning sensation is only in my feet (so far anyway!) I have only had it since RLS been in my life so can only assume it is yet another horrible addition to this miserable disease.
I usually have to take a cold epsom salts foot bath coupled with a foot vibration pad session & then rub magnesium oil into them both & that seems to alleviate & usually allows me to go back to sleep although as you can imagine after doing all that at usually an unearthly time in the early hours of the morning I am wide awake!!
Ha, I know exactly what you mean. When the burning woke me up at night I would try to walk it off, often in the staircase of my apartment building. Of course after all the exercise, like you, I was wide awake. More often than not until the sun came up.
One other interesting note about the burning. I seldom experienced the classic symptoms of RLS, jumpiness, urge to move etc..., when the burning was present. I can remember laying in bed trying to sleep, feet and thighs on fire, thinking to myself, please lord take this burning away; I would rather have the jumpiness. Then when I was withdrawing from Neupro and the classic symptom returned full force and the burning disappeared I realized the classic symptoms were actually worse than the burning. Can't win for losing eh?
I should add that with the Buprenorphine patch I am free of all RLS symptoms. I do get the burning from time to time, but not as severe as before and when my patch stops being effective after 5 days instead of 7 minor classic symptoms return and keep me awake at night. Overall though, a vast improvement. Take care, R
Yes, I have the same problem with hot feet. I use Advil cream which has menthol. It helps.My Neurologist from the Mayo Clinic told me yesterday he is advising a low glutamine diet. I currently take 900 mg gabapentin .....hoping the diet helps so I can get off of it.
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