when walking feet feel as though I am walking on hot coals. anyone else have this

[buster]

[RhondaB]

Yes I do also. They also tingle and cramp up. Most of the time my potasium is low when this happens, not that it dosent happen when potas is good, just more and stronger and last longer. My Doc has me on prescription potasium and I also try to drink as much o.j or other ways of getting potas as I can. Not to freak you out but I also had a mild heart attacl 11/2011 and they stated it was very low then and pretty much told me to make sure I take my pill and drink plenty of O.J. so for about a month all my family brought me was o.j

[Mandypandy1969 in reply to RhondaB]

Thankyou. I have a g.p. appointment next Friday about a letter received from e.n.t. also I have an appointment with a neurologist on 25th June and e.n.t. 26th June which e.n.t. referred me. Do you think I need to see a g.p. before next Friday? Really worried as i get a sunburn feeling over my back, waist, neck, face. X

[EOLHPC]

My version of this came on gradually over the years. Maybe i have something like yours?

Not sure if you're a woman, but could be mine is related to being female and 58: I had always had pretty bad raynauds in my hands & feet, but just before early menopause over 10 yrs ago, I realised my hands and feet were doing this burning red hot thing - so bad had to stick all 4 of them out of the bedding while sleeping. At the same time my version of SLE joint pain was getting worse. So I had these frozen raynauds symptoms and this burning stuff (feet especially soles, and hands bright pink/red inflamed all over). So sometimes the burning and the purple colouring happens simultaneously. This went on daily regardless of the weather, and my right foot was worse than the left. All this freaked me out, and made life increasingly difficult. Then my GP examined me nd said this wasn't normal (at that point my SLE diagnosis in infancy/teenage) hadn't been uncovered yet. She referred me to a rheumy

The rheumy did autoimmune bloods and told my gp he thought I had erythromelalgia as well as raynauds. He made me try nifedipine, on which I last 3 days: argh!!!! It made my erythromelalgia and ALL my many Lupus symptoms even worse. Then a more autoimmune experienced rheumy Finally rediagnosed my SLE/MCTD and put me on plaquenil 400mg daily which has sorta a bit taken the edge of the burning/ freezing symptoms, but helped a bit more with the joint pain etc

Meanwhile I found the raynauds & scleroderma health unlocked forum gives good info on both erythromelalgia & raynauds (another group right here) which led me to the erythromelalgia association or society (sorry forget name) in the USA where a lot of research has gone on: their site is fantastic: lots of info and advice

I haven't found many on lupus sites who know they have erythromelalgia: my impression is that rheumy's don't usually actually poly the term. Not sure why: maybe cause the condition seems to be complicated to treat & fairly unusual, especially when combined ith raynauds cause the treatments for these 2 conditions are basically contradictory. But last time I saw the reg of my great rheumy, she totally understood erythromelalgia. My rheumy says: so long as the freezing raynauds stuff and the burning erythromelalgia stuff alternate on a daily basis I'm doing ok. I'm just to let her know if either symptom is constant ie all the time with no fluctuation of intensity. Great. So basically I've learned to lifestyle manage this stuff with the help of the erythromelalgia site....

Sorry to go on so long, but hope this helps you a bit

[EOLHPC in reply to EOLHPC]

PS of course, if i walk when the erythromelalgia is flaring in my feet they feel as if I'm on hot coals, likewise my hands feel like I'm picking up hot coals

[Mandypandy1969 in reply to EOLHPC]

Thankyou. X

[lindabrown]

Funny when I first went to the doc she thought it was the peri-menopause. Then after other symptoms appered they eventually diagnosed Lupus. I still get the hot feet from time to time.x

[lennox]

I no exactly what you mean, walking is a nightmare, mine burn itch ache an even feel like there ripping and bleeding mine has got that bad I have to use a crutch, to help stop the cramp and some things kill my feet ie the nibbles on the floor when ur crossing a road the things they have down for blind people, just things some people take for granted is so hard to others, I had a aorta bypass in 2000 as my aorta was blocking and now also have a nerve sheath turmor on my spine which don't help matters but hey hoo gotta just deal with things. Just wish sometimes doctors listened to us rather than it's a flear up,

[Wrenmuzz]

I describe the feeling as being like walking on my bones, I feel there is no flesh or muscle on the soles of my feet. Just something else in the pick 'n mix of lupus systems.

[Mandypandy1969 in reply to Wrenmuzz]

I would describe it as like I have been walking on a burning hot path.

[witch2]

Oh yes burning tingling feet that hurt feels like your joints have forgotton what to do and it hurts sometimes they feel like they are constantly buzzing like that feeling you get when pins and needles go

[Mandypandy1969 in reply to witch2]

Yes just like that. X

[EOLHPC]

Wow witch2: was just taking a nap with my hands & feet on fire and was realising the feel like they're buzzing and prickling at same time as burning!

Lindabrown's not alone: although turns out I've had lupus since infancy, this burning thing got rose with perimenopause and my gp let the symptoms get ores cause of this, ie took nearly 10 years for them to realise it was autoimmune...

[Lulabelle]

I have this - re my recent post - using cream for Raynaulds and Chilblains. Blaming the temperamental weather we are having - which doesn't help alleviate the symptoms. Hoping thinks will start to settle down soon!

[lizzy1963]

hi im new here and yes i do my feet or hurting at the min and they look bigger then norm had a realy bad night with them plus my hands and the reast of me realy dont know what to do cant keep running to the docs only thing is pain killers

[Mandypandy1969 in reply to lizzy1963]

I know. Feel like a hypacondriac. X

[Bizzylizzy1]

I know exactly what you mean I had this for years bought 100s of pairs of shoes have just had 2 operations for mortons neuromas I had 5 in total but they won't remove them all so still in pain and hoping to have some cortisone injections worth asking your doctor as it does sound like mortons neuromas good luck

[Mandypandy1969 in reply to Bizzylizzy1]

Thanks. X