Burning feet and legs

[Daisy2408]

Have posted to RLS section but wondering if anything written in Pain department on the subject. Thank you. Daisy

[Nothing_but_books]

Hi Daisy. I don't have any answer for you. The doctors haven't given me any help, or even a diagnosis, in more than twenty years. I can't stand more than minutes at a time in horrible pain. I wish I had something to offer. (I suspect my problem is from a back issue too.)

[rabbits65 in reply to Nothing_but_books]

I get a lot of burning feet. I think it’s called burning feet syndrome . Can you please tell me anything you know about it? Do you know what I can do to help myself with it. What do you recommend . 😊

[Nothing_but_books in reply to rabbits65]

Hi rabbits. I sure wish I did. Some days are better than others, but I'm in extreme pain tonight, and all I have is golden milk to try to calm myself.

The things I've tried, in no particular order:

sitting with my feet in the bathtub and running water over them

wrapping a cold gel-pack around my ankles

laying down and doing back PT (takes a few days to do anything)

avoiding salt

keeping my toenails trimmed

Spenko inserts ( orthotics cause unbearable aagony)

nibbling Lindt 85 % dark chocolate

If you find anything that helps you at all, please message me. Thanks.

[rabbits65 in reply to Nothing_but_books]

Thank you so much for your reply . This morning it is 6.30 and I’m finding walking on laminate floors or kitchen floor is nice and cool . I am desperate for this to improve as I have two active poodles that like their walks . I also have sciatica that’s gone into both sides and I have to walk/stretch to strengthen . However this burning feet syndrome must have some underlying cause/reason that you and I don’t know about. Maybe we are lacking in a particular vitamin. I also have tinnitus to add to the scenario of discomfort. What are you doing for Christmas 🎄 I live by the south coast U.K. whereabouts are you located I’m 69 and my name is Penny let’s hope for a miracle for our feet . There has got to be an answer . As for shoes it’s a nightmare . I wear those pull on scratchers as I have arthritis in my feet Back and legs. What shoes do you wear? Amazing to find someone that’s got this burning feet issue. How rare are we too ? 😊 🦶 🌸

[Canarylady in reply to rabbits65]

Good morning rabbit,I get burning feet and toes,also hands!

It’s mostly at night after about 6:30 ish,so I was very interested in what you both are going though.

I live near bury st Edmunds,where about are you?

Hope your feeling abit better.

Best wishes

R

[rabbits65 in reply to Canarylady]

Thank you so much for writing to me , I feel so alienated with these burning feet and yes mine is toes too. Yes mine is mainly after about 4 pm and I also can get an intolerable itch on the feet and toes . Like a tickling . I live in Bexhill on sea East Sussex . I’m 69 lady. My name is Penny . What’s worrying me is : Could it be an underlying health condition that needs investigating . Is it coming from the nerves ? How long have you had yours , have you asked any doctors at all. Best wishes from me . Penny 😊

[Canarylady in reply to rabbits65]

Good morning penny,So lovely to receive your message,my feet are really bad like yours,drives me made and socks aren’t helpful,working on my feet all day and doing a evening shift isn’t helping,as we have to wear dark shoes,I hate wearing shoes,my feet seem to settle down abit wearing sandals!how about you?

I see there’s quite a few of us with this problem!

I wonder what is causing it?

Medication?

I ve had my spine fused together,also had my coccyx removed too!

I m in pain most days and take a lot of medication for this,and on top of this I have pmr!

Some days I find very difficult to move about,carrying bags etc…kill me then the pmr starts up!

I m in Sudbury Suffolk,but come from Kent Broadstairs,I miss being by the sea.

My name is Ruth.

Perhaps we could meet up next year once all theses viruses die down?

Take a lovely day and keep safe,and that goes for all of you lovely people on this site.

Xx

[Barnclown in reply to Canarylady]

I’m in Suffolk too! Maybe some detail in my replies, below, can be useful to you🤞..love your forum name too!

[Canarylady in reply to Barnclown]

Hi barnclown,

Perhaps we can meet up next year,if you fancy getting together?

I m at work so must go!

Ruth

[Barnclown in reply to Canarylady]

Would love too! But gotta wait till my Addenbrooke’s Immunology Team let’s me stop shielding…will the day EVER come 🤷🏼‍♀️

[rabbits65 in reply to Canarylady]

Your very welcome to come to Bexhill on sea , would be lovely to meet up. I cannot wear sandals anymore, the foot bed of sandalsare is a bit hard and I have a bunion, I used to love sandals when I was younger. I feel like I just want to wrap my feet up in cotton wool !!!

[Nothing_but_books in reply to rabbits65]

Hi Penny. I'm in the U.S.

I can't tolerate anything but extra large extra wide men's sneakers. They are inches too big, but everywhere a shoe touches my foot triggers pain.

[rabbits65 in reply to Nothing_but_books]

I am exactly the same . My feet really rebel in shoes. If I could live my life walking about barefoot my feet would be happier, but due to high sensitivity even walking bare feet now hurts. I wear soft top socks and sometimes I cannot stand the socks on my feet. I was not like this when I was younger. This has got worse in the last 10 years and I’m now 69 . Have you been like it for very long ? I was born with big toes that go over at right angles thus giving me bunions. This adds to the misery. Thanks for talking to me. I guess there is little that can be done for “ us”. Unless we were prepared to pay top price for a top doctor. 😊

[Nothing_but_books in reply to rabbits65]

I thought I was the only one who can't tolerate wearing most socks. When the company discontinued the only socks I can wear I bought a different kind. I had them on for ten minutes the next morning before I was screaming and had to rip them off. When the ones I have wear out -- what then?

Please, don't thank me for talking to you. We are here to support each other and make connections. Besides, you've helped me feel a bit less unique.

I didn't think there was any alternative anymore. I've tried everybody.

[rabbits65 in reply to Nothing_but_books]

Oh that’s very good then and yes we do support each other on this forum, it’s nice to feel we are not alone. Have you tried the diabetic socks with the soft top ?

[Nothing_but_books in reply to rabbits65]

No, I don't know about them. Do you have a link?

I'm not optimistic about any socks. I can't tell why socks hurt me. But almost all of them do. Now I'm wearing thick all cotton men's socks. The last ones -- discontinued two years ago.

[rabbits65 in reply to Nothing_but_books]

But surly thick mens socks must make your feet too hot ? I have to wear the thin ones too as thick socks make my feet fill tighter in the already difficult footwear . There is no link to soft top diabetic socks , you buy them over the counter , I’m sure if the U.K. have them in the shops you definitely can buy them where you are . Just ask for soft top diabetic socks. I bought some very extra extra wide boots yesterday from a shop selling the “ easyfit” make . I am keeping my fingers crossed but I know my feet hate any restrictions . It’s 7 am my end.

[Barnclown in reply to rabbits65]

Following on from my long reply to rabbit, below:

For what it’s worth…Now my version of this is adequately medicated, I can wear vvvvv lightweight socks + shoes part of the day,…hadn’t been able to do anything but go barefoot & wear sandals for years due to this.

My fav make of sock is Falke - available online…& I only wear Birkenstocks (recently the range has increased to include lightweight ballerina shoes etc). I have to raid my piggybank, but am too old & I’ll to take risks with my feet…I’m just not ‘safe ‘ in bare feet all year round 🤷🏼‍♀️: keep getting slow-healing wounds et …these makes are good quality so are long lasting & worth the investment, I feel…after all, this ghastly burning is as hard on us emotionally & psychologically as it is physically!

My other big investment is seeing a v expert Podiatrist ever 6 weeks…

falke.com/uk_en/p/cotton-to...

birkenstock.com/gb/tracy-nu...

[Nothing_but_books in reply to rabbits65]

I never actually noticed whether or not socks warm or cool my feet except when I'm walking through snow. I think I know the socks you mean now, and I've tried them. They aren't padded enough to tolerate them.

I hope the boots work out for you.

[Daisy2408 in reply to Nothing_but_books]

I am so sorry to hear you are having such a bad time and to hear you are getting no help. Maybe this is where mindfulness and relaxation techniques could give you some relief. I wish you well. Daisy

[Nothing_but_books in reply to Daisy2408]

Hi Daisy.

I never met a "Daisy" before. Like Gatsby. That's nice.

Ya. Why not me? They give me panic attacks. End of story.

A little self-pity, to ignore or not as you please: Did the potter's hand shake?

[Barnclown]

Might be Erythromelalgia (aka Burning Syndrome)…here’s the link to a v good up to date patient info leaflet:

erythromelalgia.org/wp-cont...

[Daisy2408 in reply to Barnclown]

Thank you for your suggestion Barnclown. We will study the contents of link. Most grateful. Daisy

[Barnclown in reply to Daisy2408]

You’re welcome. There can be many reasons for these burning symptoms…sometimes even meds & even vitamins & other supplements we’re taking for some condition can cause burning…& usually Erythromelalgia is ‘secondary’ to some underlying condition - often something autoimmune eg scelederma lupus, sjogrens, vasculitis. ❤️🍀

[Barnclown in reply to Daisy2408]

😍👏👏👏👏 my goodness, Daisy (love your name) you got a really good discussion going!

[rabbits65 in reply to Barnclown]

Thank you for your information on here about burning feet .

[Barnclown in reply to rabbits65]

You’re welcome rabbit (love your name). That leaflet has helped a lot of sufferers. Am very much feeling for you all

I’ve been managing this burning limbs Erythromelalgia nightmare for 15 years, with it getting steadily worse.

Eventually last year neurolophysiology testing helped my rheumatologist figure out that my version of this due to my infant onset lupus giving me early onset progressively debilitating + severe Raynaud’s & peripheral neuropathy….this combo has caused severe ischemia reperfusion injury in my feet & ankles where the burning has always been worse.

So my Rheumatologist now has me on NHS longterm daily Scleroderma high dose sildenafil treatment protocol which is helping, but the damage down there can never be repaired, ..and the burning will never stop, any more than my lupus can be cured. So I’ve had many years of putting together a ‘self-help toolkit’ & this year I’ve added a new type of ‘tool’ to my kit. My doctors have okayed these ‘tools’ because they don’t have to be frozen or even go to in the fridge. I get them from Amazon. Here are photos, more details + links:

I’ve got these in 3 types

I use no1&2 together as shown at night @ foot of my bad -so can slip feet under smaller more flexible pad (its gel layer shifts about freely, which is a benefit when I’m lying down). No 1 is rigidly flat, making it a v good ‘foundation’ pad

I use no3 on the floor of a footstool when am sitting down …it’s very flexible & the little studs keep the gel in place

If I dared suggest one of these to you as a sorta experiment, it’d be no3

Here are the amazon uk links to 1, 2 & 3

No 1:

amazon.co.uk/gp/product/B07...

No 2:

amazon.co.uk/gp/product/B08...

No 3:

amazon.co.uk/gp/product/B08...

[rabbits65 in reply to Barnclown]

Thank you Barnclown, it does all sound a bit complicating, but I could try these.

[Barnclown in reply to rabbits65]

For sure: everything about life with this burning just is complicated….& miserable….🤷🏼‍♀️

[Barnclown in reply to rabbits65]

The 3 gel pads I use - the numbers relate to the Amazon links in my reply

I guess my fav is No3, but No2 is invaluable too

[Batty1]

Hi Daisy, I have small fiber neuropathy (burning skin on feet) brought on from thyroid disease. No fix for me and I feel like I have a sunburn constantly on tops of my feet that come and go… taking B12 complex has helped with tinnitus .

[Daisy2408 in reply to Batty1]

So many replies with helpful thoughts. My husband says when he sees the number of people who suffer their conditions 24/7 it makes him grateful it only keeps him awake at night.

[Batty1 in reply to Daisy2408]

I suffer only at bedtime too and I think this is because your preoccupied during the day and at bedtime you can think about it….. I sleep with a fan blowing across my feet and light blanket between my feet to prevent them from touching each other, it definitely helps.

[rabbits65 in reply to Batty1]

That sounds like a very good idea. I hadn't thought about cooling fans !!!

[greekqueen]

Could this be nerve damage from diabetes? I get burning heels at night

[Daisy2408 in reply to greekqueen]

Thank you greekqueen. He has been checked for diabetes and is clear. It does very much appear to be nerve damage from lower back issues. His back was stuck solid this morning for about ten minutes. When he managed to move and lie down for an hour the pain went and hasn’t come back. 😵‍💫 been for a walk. Better now!

[Micro]

I've had burning feet but LEGS burn &tingle worse.i have a back problem &fibro. Doc gave me Phernagan for sleep aid.My legs still ache badly but the tiingle, burning has greatly improved. Why ?

Maybe it's to do with inflammation. Phenergan is antihistamine (drowsy side effect)

I'm not medically qualified and only guessing. It's strange. Perhaps this will help someone else.

[Daisy2408 in reply to Micro]

Thank you Micro. What a thought! My husband is doing the cold water treatment that was suggested and has had a bit more sleep at start of night. We will investigate Phernagan for sure.

[Micro]

Daisy, ref antihistamine and inflammation.....(from Google

HTTPS//pinned.ncbi.nih/16354985/

I don't understand all of this info but it seems to confirm a link between inflammation and histamine/antihistamine (I am GUESSING)... maybe too much histamine can cause burning and tingling in legs, feet, maybe....

Phenergan 25mgs is a 'drowsy' form of antihistamine, so safer to try it at night.

Pharmacies sell OTC antihistamines ....20mgs as sleeping aids .

Can I put a brand name ?

..'Sommalex' or a similar word.....also a drowsy making type ..also seems to have helped,...1 1/2 tablet I tried at night.

I'd love to be able to understand this better if anyone knows.

My legs still ache, slight numbness in toes still but I have no tingling or burning now.

Good luck

[manutd3159]

Hi, I went to the doctors with my RLS and they prescribed taking 1 Amytriptiline tablet a few hours before going to bed , and a painkiller at bed time. Has worked to an extent, but don't get the symptoms as often, also try a herbal sleep tablet which you can buy over the counter' get mine from Homebargains or savers, they are in a green box, try out 1 did not do much to help me but taking 2 an hour before bed was great.