I have on occasion in the past experienced 'burni... - LUPUS UK

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I have on occasion in the past experienced 'burning sensation in my feet'. Today as I write this, my feet tingle and feel like they are hot

Malteser profile image
25 Replies

I am taking 5mg of prednisone - this sensation started a few months back. Has anyone experienced this. I have lupus (sle) since 30 yrs or so ago.

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Malteser
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25 Replies
ceceliac10 profile image
ceceliac10

Hi Maltese I do also experience the seem sensation. My hands and feet burn as thought it's over a gas hub. I can actually feel the heat with the tingling.Also when expose to air I also experience the seem sensation. I believe this burning and tingling sensation is neuopathy pain. Another problem I have is damaged nerves. Where take for example my finger mighty start to itch on my hand. I am unable to locate the exact spot of the itch therefore I end up scratching all of my finger in attempt to the spot.Its very frustrating and painful. I take Amitriptyline for the burning sensation. Any hang in there and speak to your rheumy

Malteser profile image
Malteser in reply to ceceliac10

Had my long awaited apt yesterday, which I missed because I have bronchitis. Too much to deal with if you ask me. I mean come on Bronchitis in summer with temps of 33 deg outside. Insane.

joannebond360 profile image
joannebond360

I have this too, feet and hands burn, especially after being un the sun. Not sure if mine is a side effect from plaquenil as I've only had this since I started taking them. It's not nice! :(

Malteser profile image
Malteser in reply to joannebond360

Yes must admit .. I too have been in the sun, but why only my feet burn? or am I just lucky?

joannebond360 profile image
joannebond360 in reply to joannebond360

My feet burn the most but do get it in my fingers. Sat in the sun today and have it now, so painful! :(

Manolo33 profile image
Manolo33

I have this too - balls, heels and palms of hands are the worst at night. Was prescribed garbapentin by the GP - didn't work initially but since have the dose increase have worked a treat - unfortunately now left with feet and hands that feel tender and like they have no padding - better than the burning though. :-)

Loopy-loo profile image
Loopy-loo in reply to Manolo33

Hi, I have had burning sensations in my hands and feet ( hands burn more )for the last three years and have been diagnosed with Erythromelalgia and Raynaud's. Most doctors are not up to date with this condition.Its worth looking up and perhaps take info to your Rheumotoligist or Doctor.

Hope this helps. X

Malteser profile image
Malteser in reply to Loopy-loo

I am seeing the Rheumotoligist on Tuesday... a bit annoyed because I had told him my ankles hurt and he blamed my weight, which is true, I am overweight, but I have been more overweight before, and didn't have these symptoms. I have also been diagnosed with Vasculitis, so I don't know if this has anything to do with it or not. All I know is that the pain is radiating up my shin, and I feel better after swimming.. I also started taking Prednisilone just 3 days ago, just 5mg, so perhaps they are taking effect. However, compared to when I was in my 30's I am so much better ..though I worked hard to get to where I am today, because it seemed that stress has had allot to do with it.

Malteser profile image
Malteser in reply to Manolo33

Not sure what is worse... am doing my best not to take any more meds., than necessary... all have side effects, the prednisolone alone has caused the immunity to take a major dip. Again.

Malteser profile image
Malteser

Glad to know I am not alone on this. I can't remember why I had burning feet a few years ago, but it had passed. This sensation is now so strong it is frightening, with the added feeling of tingling on both feet, I also feel like I have a sore on my shin, but not visible to the eye I am not sure if its to do with the fact, I am overweight, or because I do spend time in the sun, I live in Malta, and the temps here are highs of 32-35 deg., I swim for about 3 hrs at one go because I am not in pain in the sea, and feel 'better' afterwards, but do have to sleep with icepacks on both feet, which are swollen. I take burinex for water retention, and I am also on warfarin for thrombosis, and P.E .. recently the MRI showed I have vacuities', though I don't know much about this as yet. I really appreciate this site, and especially your replied. Many thanks. x

BellaC79 profile image
BellaC79

I had tingling in my feet initially thought to be caused by vitamin deficiency due to coeliac disease. I was put on thiamine however now 2years on I have been diagnosed with small fibre neuropathy and am on pregabalin, neuro thinks i also have sjogrens which causes neuropathy. This medication eases the pain ..two years ago it was tingling and burning whereas now I only feel numbness due to nerve damage and the burning comes on after standing for a long time / activity which my rheum thinks is erythromelalgia. I have this in my hands and feet and they go bright red after activity, even as simple as washing the dishes, be very careful using ice as this can damage the nerves further.

Malteser profile image
Malteser in reply to BellaC79

Ice is the only pain relief I have .. but yes, was warned that it does more harm than good. Sorry you have this too.

Barnclown profile image
Barnclown

I'm like loopy loo: check out erythromelalgia!

I have simultaneous erythromelalgia & raynauds. EM is called "the burning feet disease" but also affects other parts of the body: hands, face, ears, knees etc. the raynauds & scleroderma assoc website has EM info, and the TEA (the erythromelalgia association) website is FULL of good info

Take care & good luck

Malteser profile image
Malteser in reply to Barnclown

yes, am checking it out... confusing init?

Barnclown profile image
Barnclown in reply to Malteser

Flippin right: confusing is the word! Especially cause we often have raynauds as a secondary to lupus, and the Pink/red

/burning phase of raynauds is similar to EM. And loopy loo is right: seems few consultants let alone gps are aware of EM.

Malteser profile image
Malteser in reply to Barnclown

Nothing goes red, just heat in my feet and tingling I noticed has calmed down. Perhaps it was the sun and my weight doesn't help...

Sjink profile image
Sjink

Yep. I get this too. Hurts at night mostly. Have to rest feet on a pillow with heels hanging in air as if my feet/heels rest on the bed it hurts even more. I found out about erethromelalgiia recently and am going to ask my rheumy when I see him in September. It hurtsregardless of activity - after walking or after a day of rest! My sister gets this with swelling feet and even more redness than me, and she does not have a lupus diagnosis. Pain meds sort of work if I take them an hour before sleep but it doesn't often work out that easily. X

Malteser profile image
Malteser in reply to Sjink

Sorry to hear this ... I was advised to use Heat and Camphor but find it better to rinse feet in very cold water, and position fan directed at my feet, which I place on pillows, with garbage bag and towel, with frozen hot water bottle resting on both feet. RELIEF. I also find swimming for an hr or 2 is helpful.. No idea whats causing it, but seeing rhumy on Tuesday.

Olibop profile image
Olibop

Yes I experience this quite often some times in bed at night I don't know were to put my hands and feet and all the little joints hurt gets soo painful xxx

behappy1 profile image
behappy1

i have had burning heat in my hands and feet for a couple of years. It is worse at night. Sometimes (less frequently these days) it affects my nose and chin. I was told by GP its nerve damage and part of the Lupus. However, I have been seeing a chinese autoimmune specialist in brighton since June. He said that it was classic Yin difficiency and gave me some herbs. I have noticed a mild improvement since taking these. I still take steroids and plaquenil and tramadol but I no longer take gabapentin. I think that the problem is that this type of issue really comes under the remit of a neurologist, whereas Lupus is treated by rhemi. I am told not to put your hands in cold water because although it helps bring relief to the burning session, it damages the nerves and makes things worse in the long-run

Malteser profile image
Malteser

That is interesting, because the massage therapist also told me not to use cold water, but to use very hot water and camphor. When she does it on me, I admit I feel great, but on my own, must say I find more comfort in frozen peas and what not on my feet. I am weary of taking any herbs, because as a herbal advisor myself, I know the dangers only too well, with herbs while on medication. I do not take anything other than 5 mg of Prednisolone and warfarin. Last week I went to a healer who told me that my chakra's were out of whack... well... i am not into reiki or into chakras, more into faith healing, which is not the same. I was a lot worse than this 20 yrs ago or so, and yes, i did have to remove any negativity in my life, it does help. Stress brings up the lupus for me. My feet are not that great tonight, although were ok while i was swimming. Sorry to hear you have it also on your nose and chin as well.

Malteser profile image
Malteser

That is interesting, because the massage therapist also told me not to use cold water, but to use very hot water and camphor. When she does it on me, I admit I feel great, but on my own, must say I find more comfort in frozen peas and what not on my feet. I am weary of taking any herbs, because as a herbal advisor myself, I know the dangers only too well, with herbs while on medication. I do not take anything other than 5 mg of Prednisolone and warfarin. Last week I went to a healer who told me that my chakra's were out of whack... well... i am not into reiki or into chakras, more into faith healing, which is not the same. I was a lot worse than this 20 yrs ago or so, and yes, i did have to remove any negativity in my life, it does help. Stress brings up the lupus for me. My feet are not that great tonight, although were ok while i was swimming. Sorry to hear you have it also on your nose and chin as well.

Suzie profile image
Suzie

I have had these symptoms on and off for years now. As a child it was my ears now it is more my feet and hands, when I am stressed my nose, chin and ears also join in. When I started hydroxy it really helped. My problem now is skin discolouration due to this med so I have had to recently stop taking it and all these symptoms are creeping back. So, feeling frustrated, but a year with reduced symptoms is better than none.

Malteser profile image
Malteser in reply to Suzie

Why does everything have to be related to Lupus?

LassieCassie profile image
LassieCassie

I am doing a search on burning pain in hands and feet. I take 15mg of prednisone daily for 3 months now. I have severe burning in my feet every night and sometimes all day. The past couple days it has been aweful! I can't stand more than 10 min at a time. Swimming does help. I do not have Lupus. I have a heart transplant. Prednisone does cause this pain. Other disease may cause it to, but I know predinose causes this. Sometimes I even feel it in my lips, gums, and tounge. Hope this helps. Wish there was a way to stop it, but we are all strong and keep on going.

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