I try and stay positive but really struggling at mo with hideous burning feet which has gotten worse .over last year. Even being on them for short period of time results in nighttime pain off the chart .
My question is did anyone ever get a proper diagnosis for burning feet ?? One rheumy said “Erythromelalgia “but other medics are very uninterested ☹️. I know diagnosis isn’t everything but I think it would help me come to terms with 👣 and accept it more if that makes sense .
As always id welcome any responses . Love to you all 😘
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Tiggywoos
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thank you hunni that means a lot ! I’ve popped my big girl 🩲 on and washed my hair always makes me feel better 😂. Tiggy loves an ear scratch ! How you doing at the mo ? X
Can't beat comfy big pants lol.im ok struggling with fatigue .it's been a stressful few months with a breast cancer scare,son knocked off bike by a car and pip review. Saw rheumy last week who is throwing fibro into the mix but I think cfs 🤔 Time to have all scans etc redone.Just had a lovely walk on the beach which lifts the spirits...for a bit anyway .thanks for asking its appreciated xxx
gosh I’m so sorry you’ve had a horrid time 😞. How is your son ? Being knocked off bike is horrible 🤦♀️. My Gp also mentioned cfS so thank you for reminding me 😘. He said he can refer to fatigue clinic or something like that . I expect it’s a long process and a wait but good to get on a list ! Big hugs 🤗 xxx
He's OK now thanks. hurt his back and took some skin off it.bike a write off still waiting for loss adjusters to ring.a woman pulled out on him at a roundabout.I think because mmf increase still hasn't allowed me to reduce steroids they are thinking something else but fatigue is more of a problem then pain hence why I'm leaning towards cfs.
KSP thank you for your reply . Basically the burning is the whole of the bottom of both feet . Like someone is ironing them . No back pain or spinal issues (that I know of ) but good question as nurse asked me that when I had ketamine .. how do your feet feel? X
Morning. So sorry about the awful feet pain. I get extreme pain in what I think is the talocoral joint where the back of the foot joins the leg. It's always severe at 6pm onwards. My rheumy said it's the Lupus doing it's thing. Ha ha! Love your cat I have two. Currently having cuddles. Sending you and Tiggy a big hug. X🌻😻
ah give your two 🐈⬛ 🐈 a stroke from me ! I’d love another but Prince Tiggy is too needy he’d never cope 🤣. Your pain sounds awful too 😒. My mum says I expect it’s the lupus doing its thing too . Big hug back to you too 😘x
the reason I said that is because I had feet pain for over 2 years together with back pains. And now I am really struggling seeing physio for my hips and being assessed on my spine on Fri with possible MRI . As I get so much pins and needles all down my legs and so much change in sensations in the body. I have always put it down to flare up with my feet pains but now I can see it is not anymore, it clearly it is not !!Just don't ignore any symptoms links to your feet and your back /spine/hips. Get it looked at.
I never considered it being spine 🧐. I also get pins and needles in feet and left hand but I’ve got tendinosis of shoulder so I thought it was that . I will mention potential of it being my spine to physio .. thank you 🙏. I do hope you get some relief and answers . Horrid not knowing and pain is frightening xx
born lefty but was taught to write with my right hand so you could say I. ambidextrous 😅 I use both my left and right a lot. Left for ironing,cleaning hse, washing stuff, I can write with my left but really slow . right for writing cutting up most other stuff. I do subconsciously use my left hand a lot of the time . Definitely can cut material with both hands 😂
that is so funny 😆 as I am the same !!! Absolutely zero sense of direction though ! Got lost once coming out of a toilet 🚻 🤣in a job interview . You can guarantee if I should go left I go right . Husband shouts “ other left” ! X
Thank you , hope she will be able to assess you appropriately and check you out and make sure your sensation through out your body is not effected especially your lower back.
This was the first symptom I had of CTD over a decade ago. I don’t think it came with redness or swelling - but I was later diagnosed with RA. It was like walking on hot coals each morning when I woke. Didn’t last long - just between bed and bathroom and back each morning.
Some years later I had pins and needles in arms and legs with cold wet thighs sensation. It was awful - worse than the inflammatory arthritis pain for me. My rheumatologist took me off Methotrexate. It took me a few more years to then be told I had small fibre neuropathy of Sjogren's Syndrome.
Then my GP decided my pins and needles and burning feet were Raynaud’s so I was given nifedipine to try. I took it from winter until the summer months but it gave me a bad purpuric rash all down legs from swelling and random reddening and swelling in face hands or a knee or feet.
Cut to a few years and a rheumatologist diagnosed Erythromelalgia / EM - which they said was the way that skin can be altered for some with small fibre damage. It is neuro vascular so sits between Raynaud’s and Small Fibre Neuropathy. Quite common for those of us with CTDs such as Sjogrens, Lupus, Scleroderma and RA I believe. I wake every day with it in my hands now.
Of course we are not medically qualified to say for sure so you’d need this confirmed by a rheumatologist, dermatologist or neurologist - but I hope this helps a little.I too hate symptoms that come without a name. My EM and Raynaud’s are my main source of peripheral pain these days along with sciatica. I understand triggers now - mainly walking with thick shoes/boots, vasodilation, cold weather and frequent Raynaud’s attacks will trigger a delayed and painful EM for me.
But heat of sun too can trigger random burning attacks in one ear, my nose or entire face even in shade with sun hat. . It’s an odd feeling but doesn’t really bother me too much. It’s useful in someways getting it from the warmth and lighting when I see my consultants - as that is how it was confirmed.
gosh oldTed makes me sad for you reading that . If only consultants had any idea what we put up with . The burning hands I get after a shower but last couple years it’s mainly been feet . Interesting you say say about hot coals as I would say exactly that . Comes on around 2am and stays until like I move like you say .
Also exasperated by cold , heat and last night feet were blue from ray but still woke with burning 🔥 .
So did your lupus cause the small fibre damage or does ray do that ? Thanks so much for your reply I appreciate it 😊
sounds very familiar to me although now only get it with EM not the invisible neuropathy - which is all numb now told damage already done by Raynaud’s, EM and SFN so walk with stick as affects my balance. No all related to Sjögren’s and Scleroderma overlap in my case. Dermacool 5% helps on feet might be worth asking for trial of. Some people are getting infusions off lidocaine for EM/ SFN in my infusion ward - they swear by this. Referred for it by their pain clinic I believe. Take care and best of luck x
ah yes the anaesthesist who admistered the ketamine mentioned lidocaine but said it wouldn’t work as ketamine didn’t . I suppose the million dollar question is does it mean that the CTD isn’t under control or getting worse when we get EM. I suppose we will never know .
Thank you for mentioning dermacool I will defo write that down
have you ever tried cbd oil? Physio mentioned it to me but hard core Ketamine 💉 infusions did nothing so I doubt if cbd oil will . Maybe a wizard 🧙♀️ from Glastonbury would help ! If you don’t live in UK you won’t have clue what I’m talking about . We have to try and smile 😃 don’t we
ha ha - I tried CBD oil for a short time and convinced myself it was helping me sleep better. Don’t think it was and it tasted bad and cost too much.
I then I got put on hugest dose of Mycophenolate and later on Iloprost infusions - which both seemed to reboot me to an extent. The thing is that we often get diagnosed with heightened pain sensations but I’m mostly opposite although this varies according to location of the pain. I’m 60 - did childbirth the hardest way possible due to remote location - didn’t even get offered pain relief from recall. So I think I deal with pain quite well until it’s in my head or my mouth. Then I make a right old stoosh!!
I had second IVIG a few months ago - that was grim and I got a horrible reaction called Stephens Johnson Syndrome - a blistering necrotising thing in mouth and lip. Now my rheumatologist wants me to start Rituximab instead. I dunno - thinking on it all really but gone from drugs like Gabapentin and Pregabalin and Amitriptyline (none worked and all awful side effects for me) to big guns. It would have been good to be offered all these ten years ago perhaps but age 60 I’m starting to want to head for a desert island where the wild things are minus all medications apart from my Levothyroxine! X
I’m so sorry OldTed. I have EM. Also peripheral neuropathies. Having more nerve conduction tests done next month. For me, a mix of gabapentin, venlafaxine and 325 mg aspirin helps a lot. Mine is feet, hands, and face, arms and chest. Recently my neurologist tested my B1 and B12 and a other nutrients. They were all fine except protein levels low. It’s worth getting these nutrients tested because if you are low, that could be cause of your nerve pain. I am 65. Are you on Hydroxy? I’m supposed to begin methotrexate soon but after reading the experiences of others, I’m not sure. Btw, my gabapentin dose is high. Morning dose is 900 mg. It used to make me very sleepy. After several years I’m adjusted to it. Best to you.
thank you MrsM. To be honest I’m past the point of caring about the pain mostly as just learnt to live with - a lot is now more than numb. I have hated all the nerve pain drugs so much they have caused me more suffering than any other family of drugs and never helped with burning. Each to their own though.
I’m on max dose of Mycophenolate and soon to start Rituximab having had a severe skin reaction to IV immunoglobulins. My Vit B12 is fine and all my vits are checked regular due to scleroderma gut 😊.
yes the nerve pain drugs are vile .. work for some people not for me and by sounds of it not you . Made me terribly depressed which is last thing we need . I’ve heard good things about rituximab so I’ll keep fingers crossed 🤞 for you . X
Yes we do seem to have quite a lot of important bits and pieces in common don’t we! Thanks for the 🤞🏻 about Rituximab. I admit it seems rather a big gun for little ol’ me but I’ve still got a few weeks to mull on it before giving my rheumatologist my decision x
please google [vit b1 deficiency, the great imitator of other diseases] by dr burg, as burning feet is one of the symptoms of this deficiency. it also is responsible for nearly everything that goes on in the body
Thanks Jill ! Seeing haematologist in two weeks as had high B12 for 3 years and no one knows why . My plan is after seeing him to start a really good B supplement as I’m suspicious it’s a “false high”. Going to google B1 as hadnt heard of B1 x
I’ve had same ie high B12. Been taking Jarrow sublingual B12 for years - they taste lovely! Despite scleroderma bowel and paralysed gut throughout, I have never had further spells of gastritis since taking it. I order it online - must be Jarrow someone advised. Not cheap but as I’m on max PPI, liquid low fodmap diet with serious malabsorption issues, I think it’s pretty important.
Maybe! I remember someone really nice and knowledgeable from the thyroid HU recommended this brand to me years ago. I love the taste they are my nightly treat!
Hiya, I have Lupus and hypermobility etc and have suffered with pain in my feet where they feel broken and tried acupuncture, dry needling, cortisone injections etc and Naproxen . They are temporary relief solution but nothing takes the pain away for good. However HOKA Bondi One One trainers are the only trainers and flip flops that I wear as it feels like I am walking on the clouds. I have 6 pairs because they are amazing. Happy feet that I can actually walk without pain. I hope that helps? ☺️
thanks so much I thought I replied earlier so goodness knows where that’s gone ! I love trainers and I’ve googled those and good offers for Black Friday ! Are they true to size or do you go up a size please ? I’m really sorry you suffer badly with your feet too .. it can be very depressing can’t it . I try to keep positive so thank you for the trainer 👟 tip ! X
Hiya, I am glad that you like them.Yes I get 1 size up. The flip flops Hoka make or skidders are great for holidays and summer too. X Enjoy walking on air 😍
Never got a proper diagnosis, though my rheumy and I threw the word ‘Erythromelalgia’ around like yours has. All I know is Plaquenil (hydroxy) seems to have sorted it out. I was getting burning hands too, and sometimes burning knees, but the hydroxy has virtually put a stop to all that. #grateful
Morning Tiggywoos. I’ve been suffering with burning feet since being tapered off Prednisolone. It’s been going on for several months now and I thought I was the only one suffering. I’m currently in bed with my feet burning so badly I can’t even touch them, let alone walk on them. Every time they reduce my dosage my feet flare up, even though it’s 1mg each month 😢😢. I feel your pain and discomfort and there seems to be nothing that can be done but suffer. Big hugs 💗
oh hun I am so sorry 😢. The Drs could never understand how painful it is unless they have had it themselves . What dose of pred did you find the feet a bit better on ? Sending you big hugs ❤️. I know how depressed the feet can make you as when they aren’t burning (which isn’t often ) they feel like you’ve got no skin or flesh just bones xxx
I’m in a vicious circle at the moment. As well as having Lupus, I’ve been suffering with Scleritis in both eyes, so my Preds have been up and down for months from 60mg to 10mg then back up again 😢😢 I manage to get down to 10mg then my feet and eyes flare up. Went to the eye hospital yesterday and was told it’s a waiting game to see what happens, no consolation for me having burning feet 😢😢 My Renal Consultant, Rheumatologist and Eye Consultants all desperately want me off the Preds, as I’ve been on them for over 7 months now, but can’t seem to get below 10mg. Feeling really depressed and low, as I just can’t seem to move on with my life 😢😢
oh hun that’s so awful . Have they tried you on anything for the feet ? There is quite a lot of meds others have tried and they’ve worked (I’m in the scleroderma forum ) . If you put Erythromelagia in search bar there’s quite a few posts . I pray that something could work for you .
Interesting you say 10mg as when I was on pred last year 10mg was the cut off point where my feet burned again .
Have you spoken to GP about feet ? If you find some good info on here you could go armed with some info .. sadly rheumstologist aren’t really familiar with it . Does it get worse if you are able to walk on them ? xxx
Just clicked on the link, it works. As I’m already in bed not able to do anything, I’m going to have a good read 😀 Also going to have a look at the other forum you sent through. Thanks ever so much. Take care. Sending big hugs ❤️
I’m sorry you are suffering. I can’t give advice but can feel your pain. My feet are so painful now I can hardly walk at times. It has got so bad I’ve restarted methotrexate. I’m really hoping methotrexate helps as im getting so upset by my failing mobility.
I hope you find help and answers for your burning feet x
I’m so sorry to hear how awful your feet are BK47 and I know how upsetting it is . I really hope methotrexate helps you . Thank you for your kindness xx
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