It’s a medical one: Red painful feet

[MynameisML]

Im a nurse but I can’t figure this one out so any specialist nurses, doctors or people who have similar advice due to experience, id appreciate input. I don’t have a diagnosis yet but I have red feet with burning pain consistent with peripheral neuropathy. I’m in the process of moving and because this isn’t urgent or actute, I won’t get seen until I’ve moved to new GP. Anyway, I’m trying to figure out the most likely cause.

It’s not from walking, or my shoes, and I’m definitely not diabetic. Normal BMI.
Rheumatologist previously said this year that I don’t have lupus or rheumatoid arthritis either. I was surprised as I had a mildly positive ANA result, but no face rash so makes sense I guess.

I have had unexplained low blood pressure the past 6+ years. I have to take a low dose of steroids otherwise I pass out.

Foot problem is a fairly new symptom that’s come on very gradually over past few weeks/months. No explanation ever found/given for cause of low blood pressure. Without steroids it drops below 90 systolic and I pass out. Unfortunately once something is being controlled doctors seem to lose interest in the cause.

Also have had intermittent fatigue for the past 8 years made worse by covid. I’ve been told by specialists it’s not ME/CFS though. Long covid is definitely improving but now this.

My feet feel like they are on fire. My toenails and tips of my toes are the worst, Massage and aloe Vera gel gives no relief. Of course I will try different meds but that’s not the issue - I’m trying to figure out what could be the underlying cause if it is peripheral neuropathy in my case? Regular blood tests all normal.

Other long term symptoms: migraine, body aches. thirst (but no increased urination), blepharitis, small muscle knots over all bones in my back - massage therapists decline to massage bony areas properly so I never get those knots sorted. Anyone found a massage therapy type that works for that?

I feel increasingly like a walking medical mystery.

Luckily I have private medical insurance now so once I get a new GP I can move things along.
Would welcome ideas right now as the pain is worrying me. I’m already taking amitriptyline and NSAIDs. Very frustrated as once I’d moved I had a walking plan figured out to get back in shape. So should I avoid and do daily swimming instead? So inconvenient; I’m not sure I could tolerate walking but I’m so disappointed.

GP said I can put my feet in cold water but unsure if that’s a good idea. Any advice for treating any of the above also welcome. Anyone else been through this?

Why wouldn't you follow the advice your GO has given you?
Could it be athletes foot- id try a spray for that

Gout? Dermatitis from fungus?
Do you experience any loss of sensation or tingling or is it always painful?

Most insurance companies accept referrals from private GPs or their own virtual GP service nowadays. Far quicker and easier than waiting on an appointment with an NHS one.

Oh, thank you! I’ll do that then :-)

It sounds like a condition called erythromelalgia which my aunt had. I was down as her next of kin for medical purposes so got quite clued up about explaining it to various HCPs over the years. Hers had spread up her legs and was uncomfortable but not dangerous. Link to the NHS page here

www.nhs.uk/conditions/erythromelalgia/

Do you take magnesium? I had something similar but magnesium sorted it out really quickly.

That's really interesting, thank you!

Psoriatic arthritis?

Have you had b12 ferritin & folate checked? IME of peripheral neuropathy some people do find cold helpful (not too long) other people find warm helpful (not too hot -you do not want to accidentally burn your feet).
some people find capsaicin cream helpful. (Be careful not to slip if putting cream on feet.
but you probably want to be deffo sure that’s what it is before you start trying things -(see above).

Small fiber polyneuropathy can be autoimmune in cause and linked with dysautonomia.

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=www.va.gov/RAC-GWVI/meetings/apr2017/Oaklander.pdf&ved=2ahUKEwj5-KGWq9eHAxXgW0EAHVkEEVIQFnoECD4QAQ&usg=AOvVaw2RTQFJEieRTiM_8RaroIBG

Sjögren's syndrome?

https://www.nhs.uk/conditions/sjogrens-syndrome/

No ideas sorry - but if you are a nurse do you do long days/ ward shift work etc? If yes have you tried compression socks? Not saying it will be a cure but may help ease the symptoms slightly

No medical knowledge whatsoever, just a sufferer - could it be gout?

@MynameisML Hey Op,

Just wanted to let you know that you’re not a medical mystery. I got my official diagnosis recently: small fiber neuropathy.
That sounds exactly like what you have. I’ve suffered since 2011 and after 13 years was diagnosed. It is a condition not well understood by medics at all. It is progressive and does affect heartbeats, bowel movements and so many others.
It is common to be dizzy especially when standing up from a seated position.

Medication is not well researched and often you are prescribed antidepressants like amytrpyeline and anti epileptic medications like gabapentine and pregabalin

I hope you find a specialist who will really listen to you. Unfortunately it is a very difficult condition to understand.

I wanted to ask, I think I have erythromelalgia or SFN, what do you take to help it?

@SMLSML

I take pregabaline 75mg x2 twice a day and 30mg of duloxetine. I used to take amitriptyline then switched to notriptyline but they made me feel like a zombie hence the duloxetine.
Pregabaline takes off the sharp edge but it’s not a painkiller so I am still in an awful lot of pain.

So sorry to hear this that it's still painful. How are you able to have a normal life/still work?

@SMLSMLI no longer work. My children are little and I’m alone. I have a cleaner paid for by the council ( eu country) and I have a disabled parking badge. I eat healthy without being fixated. I take magnesium threonate, glicinate and citrate. I read a lot. I moved to a ground floor flat. I have very good friends with whom I can connect with intellectually and emotionally. That’s how I survive. Looking at me, you would never tell. I present very well dressed and articulate but it all belies the pain. Sometimes i am in so much pain I simply have to lay on the sofa while my children play around me.

One thing I do do is push myself physically. So any opportunity I have I take my children out to ride their bike and play. I have a papillon who’s 6 years so I walk her once a day.
my cats are 8 years old so whether I like it or not, I must get up and feed them.

Basically, I refuse to rot away and even my rheumatologist once said to me ” you have managed too long on just your will power”.
He's right. He retired in 2018 and 8 years on, I am still living on sheer willpower.

I’ve got an appointment next week at the pain clinic because I need to move on to opiates. Pregabaline etc doesn’t cut it anymore.

Deficiencies of one or other of the various B vitamins can cause rashes and tingling, numb feet.