Burning feet

[amandajane76]

I have Raynards symptoms but I am unsure if the burning sensation I get and the colouring changes are in someway connected to the lace rash on my legs rather than the Raynards.the sensation in my feet is unlike that of chill blains

[Suzie]

Hi, I too get burning feet. If I get too warm it kicks it off. It is a vascular problem. Very annoying. It tends to start by itching first . Ask your Rhumy but I am afraid I just have to try and ignore it. Very difficult especially in hot weather. Good luck.

[charliec in reply to Suzie]

If your feet start burning and turn bright red then it's more likely you have a connected condition that I have too called Erythromelalgia. This has effected my feet quite badly and is worse in hot weather or if I have a drink (it can affect any part of the body including face, cheeks/chest etc) and makes the area. Have a look on the Raynauds UK webpage and look at the assoc conds on the right. HTH's

[misty14]

Hi Amandajane

I too get burning feet, have the lace rash which I think is livedo and have Raynauds just like you. I've linked the burning to inflammation as my feet do swell and it worsens the lower I go on the steroids. Do you have treatment for Raynauds?. I take 20 mg Adalat daily and find it really good. I'll be interested in other answers you may get as I've never been sure what the burning is. X

[meggie83]

It is interesting to read that so many people get this severe burning in the feet.Mine start when I'm in bed.I get up and walk about standing on a cold floor or immersing feet in cold water.

[Hughes-Comrade in reply to meggie83]

Mine start in bed as well. Have you learned anything new in the last two years? Thx.

[Barnclown]

Due to burning in my feet (& hands) I was diagnosed with simultaneous raynauds & erythromelalgia early in 2011. My fav source of info is:

The Erythromelalgia Association > What is EM?

erythromelalgia.org/Wha...

Erythromelalgia is a rare and frequently devastating disorder that typically affects the skin of the feet or hands, or both, and causes visible redness, intense heat ...

The association also has a great Facebook page

[happytulip in reply to Barnclown]

How is it treated Coco? I have the same symptoms and have been told it could be neuropathy. I'm waiting for a nerve conduction test.

[Barnclown in reply to happytulip]

Hello 👋👋👋👋 I'll PM you, but first here is a link to my more recent fav source of info re erythromelalgia signs, symptoms, diagnosis, treatment, differential diagnoses etc:

rarediseases.org/rare-disea...

😘🍀😘🍀

[happytulip in reply to Barnclown]

Thanks!

[amandajane76]

You have all described it to a t

[tennissenior]

If you had true Raynaud's, your fingers would get numb and turn white on the outside and purple on the inside and get numb. Toes get numb - I never checked the color. All I know is that anytime I feel chilled or in a room with high AC, Raynaud's attacks! We try and look for outdoor cafes to have dinner so I don't have to take my hand warmers with me. Has your doctor diagnosed Raynaud's? If you have diabetes, numb toes would be called neuropathy - not Raynaud's.

[Snowdragon]

Hi.I started getting this,this year after a bout of childblains. I spoke with a doctor on the phone and he said Raynauds asking me if my feet were red underneath,he prescibed.Nifedipine which works even though it looks as if my toes and heels are full of blood,but takes away the pain and burning. Both times i had had this it was after I came out of the bath but later at night when i went to bed,as you can guess I didnt get much sleep. Now looked on the EM site at the pictures and they look more like my feet are also sometimes get red hands. So now I am confused lol.

[cloggy73]

Hi ladies and any gents who are reading and affected too. Though I hate the fact that you are all blighted by this, it does comfort me that I'm not a freak and not alone! (sorry does that sound v v selfish!?) I too suffer from erythromelalgia and raynauds as well as the usual sle nonsense. I went to see the neuro about the erythromelalgia as the rheumy thought he would be the best bet. So far aspirin has been the only solution and not a fab one as it gives me indigestion and I'm not so sure as to how well it works. My attacks come mainly at night, again like you have said when hot, during a flare, when Ive over done it physically or emotionally, had a drink (red wine mainly excess). The pain is excruciating and I can't sleep at all. Apparently it is quite difficult to treat, but as many of you have already said it is on the opposite side of the spectrum of raynauds, ie a vascular disorder. If you have been prescribed something for it and it works could you pass it on please. Thanks, Mx

[amandajane76]

So is this symptom a direct result of lupus.on other occasions I get chill blains..one extreme to other

[Hidden]

I have RA with additional diagnosis of Sjogrens and Raynauds as secondaries -but also Hypothyroidism - which can affect the circulation I'm told. I also have a small fiber sensory neuropathy which my GP and a connective tissue professor originally felt to be Raynauds.

I had the sole burning very badly when my RA first started - I could barely walk for a few months. More recently for about 18 months both hands and feet would rage but this suddenly fizzled out a few months ago when other illnesses came to the fore - first pneumonia followed just this last week by some kind of severe abdominal infection/ sepsis. Now I'm recovering from this latest infection I notice that the icy feeling in my feet and up my legs is coming back during the day and at night my extremities have started burning again. Weird!

The burning and sensory issues were a big problem for me for ages and I was referred to a neurologist whom I saw in November - who at first diagnosed a progressive small fiber neuropathy - probably immune mediated. He then changed his mind when the results of lumbar puncture and nerve conduction studies and recently a skin biopsy showed nothing conclusive.

Now my rheumatologist has decided it is probably part of my multi system autoimmune disease - which he still believes comes under the broad heading of RA.

I tried Nifedipine for five months last year. It gave me the redenning and hot swelling of Erythromelalgia initially but also some relief for a while - until my legs started to swell up and I got a nasty follicular rash. I think I will ask about taking it in winters only next year because my hands and feet have really struggled with the cold this winter/ Although only my toes go white not my hands. I believe this is common with small fiber neuropathy too though so am really none the wiser about it all. Epsom salts in the bath are supposed to help and at one stage over the winter I was running a semi cool bath before bed time and soaking my feet and hands in it throughout the night. Also magnesium spray was suggested to me and a fine hand spray of water seemed to help when it was bad.

[charlene216]

I get that too from time to time. My daughter also has Lupus and she was telling about her hot feet. So uncomfortable.

I have used this

Ketorolac Tromethamine 2% Topical Gel

It's a prescription and it helps.

Also same medication -toradol - Ketorolac Tromethamine - comes as a nose spray called Sprix if I am having a major bad joint day I use it. It has saved me from going to ER or using narcotics to mask the pain - best of luck