Hot achy feet

I’m on my feet all day at work as I’ve always been since I was 16. But since being diagnosed with PA at 47 my feet are so hot and ache. I’ve tried every cooling spray known but they’re really on fire. Is this normal?

[Ritchie1268]

It can be.

Mine are the same, as if I'm walking on pebbles at times.

I saw a Neurologist a few weeks ago that says I have a form of Neuropathy, nerve damage in my feet from PA.

I'm hoping that keeping up the self injecting every other day will repair the nerve damage, if I'm lucky enough that it does, it maybe sometime.

Ask your Dr to refer you for nerve tests.

[Hidden in reply to Ritchie1268]

Does b12 repair nerve damage then? I used to self inject every 3 days and after a few months prolonged it in between, so now inject weekly to just to keep me awake? Maybe my feet feel it first ...?

[Ritchie1268 in reply to Hidden]

From what little I know, I believe that it can do in some cases but it can take a very long time.

[deniseinmilden in reply to Hidden]

Yes, it definitely does, so long as you have enough B12 and supporting supplements. I'm still getting improvements after 4 years of daily SI and supporting supplements.

You could try increasing your injections again - if you need it, you need it - to, say, every other day and taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, maybe vitamin D, ideally from your diet.

Have you tried going gluten and/or dairy free as these can lead to bloating problems.

I hope you get some improvement soon.

[Cb1963]

Yep I'm afraid that's a common issue, we who have these symptoms have got a dictionary full of words to describe the symptoms, and sometimes you'll feel different sensations/pains, I have to be careful having a bath as I can't feel the temperature of the water with my feet, so carefully on that one,it could well be a long process, and recovery or cures vary in each individual, PA or symptoms associated with B12 deficiency are numerous,I'm finding out the hard way, different symptoms can appear, it's a sly condition to have, so just keep a careful eye out for other health issues, the causes are numerous that bring on the condition, so smoking and drinking doesn't help, a healthy diet,you may have to see the pain clinic if your pains are severe,hopefully you'll get a few more replies and you'll have a better understanding on this condition, I found trying to understand this condition was the hardest part, and acceptance is even harder,I've found stress makes things worse, so try and avoid this one, hopefully you'll get a positive outcome, if you have any further questions, I'll be glad to help, thanks.

[Hidden in reply to Cb1963]

I remember as a kid being able to sit in very hot baths and not feeling the heat? I got diagnosed with PA at 46

[Hidden]

So many things are different as another is my stomach is sooo bloated ! I’ve been able to cover it up in winter but now summers here and T-shirt’s etc its well bloated

[pvanderaa]

Have you iced them?

I find I can’t wait to get into my slippers once I get home.

[Hidden in reply to pvanderaa]

I bought a crackle ice spray from Avon which is ok not amazing

[pvanderaa in reply to Hidden]

I didn’t have time for a long response before. I’m wondering if it is nerve damage or nerve repair.

I’m thinking ice water will make them feel better if the feet are actually overworked and hot. Nerve damage may deaden the symptoms.

Nerve repair strengthens the signals to the brain so can appear to increase pain, itchiness, maybe hot/cold as well.

If the icing seems to make matters worse, it might be that the pain is just an illusion from the nerve repair. Both the overworked heat and the cold are amplified to the brain which can’t quite figure it out.

Exercise to get the blood flowing in the feet might just stimulate the nerves to help the brain figure the illusion out.

There are a lot of “may” and “might” in here. I’m not medically trained. The symptoms are unique to your situation so not everyone with B12D or on injections will have the same symptoms.

[Ritchie1268]

So from your reply pvanderaa this would explain why my feet were just tingling & burning but not painful when I first started to SI, which I could deal with, to now having turned really painful after wearing any type of footwear. Signal to the brain improving & slowly repairing nerve damage, maybe?

[pvanderaa in reply to Ritchie1268]

For me the symptom is hunger from repair of the vagus nerve after my injection. I can eat like a horse but have to resist and tell myself it’s an illusion from the nerve repair.

The hardest part I've found with this illusion of pain is the getting started. I just want to lay in bed but then I feel worse instead of better.

Getting started slow and working in the garden for me, I find I can keep going as long as I get plenty of liquids. The physical exercise helps strength the muscles, stimulates nerve repair and helps the brain figure out that any pain is an illusion.

Somehow, feeling good that the pain is an indication that the nerves are being repaired, helps the brain figure things out faster and the pain disappears.

When I first started, I was stressing out about the headache and muscle pain, effectively making matters worse as the brain refused to recalibrate when in that stressed out state. My GP in the UK thought I was suffering from anxiety and was a total hypochondriac. He prescribed antidepressants which gave me tinnitus and erectile dysfunction (two side effects well documented in that paper that came with meds.)

Someone on the old PAS website told me about the nerve healing symptoms being illusions and it clicked for me.

Pain is very counterintuitive. I started a logbook and found a short term memory test on the internet that was not letter or number based. I recorded severity of symptoms, my daily memory test scores and even treated my level of anxiety as just another psychological symptom and recorded its severity.

I used the ED and the logbook to get the GP to give me hydroxo injections, first every 2 months and then monthly.

Eventually I used the logbook to also sort out dietary issues with gluten, dairy, soya and palm oil.

Do you keep a logbook?

[Ritchie1268 in reply to pvanderaa]

Interesting.

It seems like a revolving wheel where pain is concerned. The worse you feel mentally, the more physical pain you feel, the more physical pain, the worse you feel mentally from frustration etc.

I did keep a log at the beginning of loading doses which is why I found out how often to self inject, but I haven't done for a while now.

[Kate1914]

WOW - I have itchy feet and thought it was just me - usually in the evening when sitting down. I have always put it down to just being me or sitting with my feet up on a stool. Many thanks for saying this I now don't feel such a fool.

[Hidden]

Hi lizblow,

I don’t have PA but I do supplement with B12 sublingual because I’ve been a vegetarian for the last 25 years. My B12 levels were always normal.

Since I started perimenopause in my 40’s I had the hot feeling in my feet. Before that my feet used to freeze and I live in Brazil!

I couldn’t sleep at night if I had a sheet over my feet. This has happened for years and I just thought it would go away with menopause, but in 2018, 2 years postmenopause, at the age of 52, I had this freaking episode: both hands and feet went weak, then numb and finally extremely hot, and now I have this burning sensation on and off. It’s really bad during hot weather (which is almost always over here).

I’ve been told by doctors that this is a type of peripheral neuropathy that can have many different causes. In my particular case, it’s not B12 related, apparently, because my levels are normal and they actually skyrocketed when I was taking the sublingual tablets every day, so now I take them 3X a week. My ferritin and folate levels were/are normal as well, but ferritin is always in the lower normal range.

When I had the ‘episode’ in 2018 I was particularly hot (overdressed) and I normally don’t sweat when hot so I think I had a sort of heat exhaustion and my brain got caught up in a sort of chronic abnormal response to temperature sensation.

My personal opinion is that the fluctuation of oestrogen levels during perimenopause and low levels in menopause have been a sort of trigger to all this mess, but I don’t discard any underlying conditions.

So far nothing has made it go away, I have been prescribed Pregabalin, Duloxetine and Cyclobenzaprine to no avail. I have been told I have fibromyalgia, but many women have the same symptoms during hormonal imbalances (online forums).

It can also be a symptom of glucose intolerance and diabetes.

I had to use ice packs during Summer in order to get some relief and sleeping was really bad. The lack of restorative sleep is both a cause and a result of the neuropathy.

I don’t know if you can relate to this, but if you do, there’s a lot more I can tell you.

[Hidden in reply to Hidden]

I used to have really cold feet before I started b12 now it seems it’s the other way round

[Hidden]

Thank you everyone it’s been interesting to read

[Sleepybunny]

HI,

There is a condition called "Grierson Gopalan syndrome" or Burning Feet Syndrome that can sometimes be associated with B12 deficiency.

[Hidden in reply to Sleepybunny]

Ok have to google it thanks

[Mercifully]

I had over the top pain in my feet. Swelling, numbness, yet extreme pain, reduction in the ability to move my toes, walking on stones, joints in my feet would pop, cramping/spasms, sweating feet, hot/cold temperature issues. Nothing brought relief. I was a heartbeat away from needing a wheelchair. I'm taking daily SI with cofactors and I have had improvement in my peripheral neuropathy. I've been self injecting daily for 6 weeks and continue to see improvements. It's not linear though. I have "good feet" days and "bad feet" days. I hope to continue to improve. From what I understand, when there's neurological damage, daily SI is suggested until no improvement is observed. So that's my plan.