I’m just wondering if anyone else experiences sharp stabby pains in feet and toes especially evening and night? Ive been noticing these more and more over the past few months. I’m worried it might be a sign of peripheral neuropathy. I’m probably going to have to see the GP about it but keep hoping it’ll go away before that, because I like to avoid GPs whenever possible. Ive had general foot/ankle/leg pain for over a year which goes away and then occasionally returns, but these sharp pains are different. They come when I’m resting and feel like wasp stings, or needles being pushed into toes, or sometimes like throbbing little drills. It’s like little tiny demonic foot workmen get going from about 7pm onwards.
Thank you
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I'm sure there could be many reasons for the pain you're describing. I just wanted to mention that low vitamin B6 could be one possible cause of your problem. Or if you've been supplementing high dose vitamin B6 then that can cause similar problems too.
Thank you - I don’t supplement B vitamins at all. My ‘natural’ B12 came back over range at last check (awhile ago) so I just swerved B supplements. Thank you I’ll look into this.
My B12 is also high & I haven’t taken a B Complex for over 6 months. I’m considering supplementing folate only as my level has dropped. I’ve had pain to one foot & have a Morton’s Neroma in 3rd & 4th toe, picked up by physio & ultrasound. I’ve found taking daily turmeric & black pepper helpful in improving symptoms.
Hi, could be you aren't using it well then. Have a read around the folate cycle and methylation ( lots online, some of it rubbish so be wary, but this seems to give you a basic idea peoplesrx.com/your-b12-and-.... Changing to a methyfolate (small amounts only are required - I use about 500mcg daily- start very small and build only if it seems to suit you) made a huge difference to me. I have small fibre neuropathy as well as peripheral. And check blood sugar if possible, as even minor imbalances can cause or worsen neuropathy. Good luck
Interesting question. I started to have signs of what is now believed to be small fibre after an injury nearly 22 years ago, but still being diagnosed currently. Then I was told it was a repetitive strain, followed by a fibromyalgia diagnosis and other autoimmunity. I have hurt in all the places (plus some) that they used for the fibro diagnosis since I was about 12 for certain, possibly earlier. I suspect that an undiagnosed gluten and dairy problem (from birth) triggered the genetics, (including lack of glutathione and poor methylation so poor clearance of oestrogen, metals, neurotransmitters, medications, 'toxins', increased need for folate and B12 etc) plus heaps of unrelenting stress and insulin/glucose issues, vulnerability to high inflammatory cytokines, Epstein Barr possibly triggering autoimmunity and affecting thyroid....a combination of factors! Not yet sure if the SFN is Sjogren's, which is hard to diagnose for certain, especially if substantially neuro as more often seronegative.
Adding B12 made a difference, adding methyfolate made another big improvement, as did magnesium and vitamin E. Changing the diet was key, and the lifestyle (to deal with and manage the stress better). But it has all gone on so long, I don't know how much is permanent and new things keep cropping up. I keep reading and tweaking in the hope that the nerves will continue to improve for as long as possible. Cheers
I'm in the same boat as You are. :-(. I'm 44 years old and ALL My problems started with my hypothyroidism. It is controlled now, I'm taking levo, but for some strange reason My PN does not improve. I had a nutrigenetic test that revealed increased requirements of B12, but my MMA is normal (though B12 is 250). I fear the future
Hi, without wanting to seem picky, I'd say it is more likely your problems started with the virus that resulted in your De Quervain's thyroiditis (although you could have already had a tendency to thyroid disorders of course). Viruses can have long lasting effects (think long Covid) and Epstein Barr for example has been linked to a number of autoimmune conditions, such as Sjogren's, as well as Hashi's. In your case it looks as if the thyroiditis did not resolve properly and has left you hypo. Low thyroid can cause neuropathy, but given your horribly low B12 and ferritin, I'd be trying to get both of those to an optimal level and then see where you are. MMA and homocysteine can help with B12 deficiency diagnosis but neither are perfect and B12 status testing is pretty poor. Unless you know that your diet was lacking B12 or you have recently had Nitrous Oxide (which inactivates a % of your B12, so serum could look ok but cells not be) I would either be pushing for more testing, doing your own or taking a good supplement (have you already started one? If so forget the testing). So focus on getting vits and minerals optimal and then you could look at some of the post viral protocols just in case you haven't actually got rid of it. Could be that the virus (and other risk factors) have triggered Sjogren's which can cause small fibre neuropathy. Gluten can be a cause of neuropathy, although as my neuro says, not all neuros agree on that one. So stress, diet/gluten, blood sugar, iron, Vit D, magnesium, B12, other B vits may all be worth thought. What, if any, family history, especially re B12 and what did the test say about your need for B12. I found out a lot just by asking family for history, to see where possible weaknesses might lie. Don't be fearful (easy to say, I know), there are always things that we can do to help ourselves improve. Best wishes
Thanks for the advice! I just got my latest results: b12 went from 250 to 950! After taking a 500 mcg pill once a day for a month. Maybe I over supplemented ha. My ferritin is still low, just 14, but I have only taken pills for a month. Thyroid levels are good: TSH is 1,77, t4 is 1,45 (0,7-1,7) and t3 is 2,6 (2-4), not THAT good, but I assume enough. Besides, they told me T3 levels vary enormuosly intra day, so it's not a reference by itself. I've had ANA tests for autoinmune disorders and all came back negative. No thyroid antibodies either. Blood sugar is perfect. So, all that's left is low ferritin or long term effects of the virus I caught!.
No problem. 950 sounds good although that is a pretty hefty increase on a relatively small dose over a short time and given your symptoms, it may not be getting into the cells properly. Don't discount it just yet. Some indications are that Covid messes with methylation, which affects our ability to use folate and B12 - you don't necessarily look low in B12 or folate - and if one virus can trigger that weakness, why not others.
Some research suggests that the methylated forms of B12, B9 and B6, methylcobalamin, methyl(tetrahydro)folate and P5P can help neuropathy even in those without deficiencies, just don't overdo it. Ferritin can take a long time to raise and low iron can cause neuropathy. Some with autoimmunity are seronegative, so a negative ANA does not rule out the possibility, but hopefully not.
Well done on the perfect blood sugar! I guess you must have been working on that one. Did you manage to get someone to test insulin? It can be off for so many years before blood sugar shows anything. Any tips appreciated. Cheers
Insulin is also perfect. I also had a Brain MRI which was normal. I wonder if I could have something else in my spine (say, MS) in spite of my Brain being completely normal. Hope not! I did a Spine MRI in 2019 because of my tinnitus and it only showed 2 herniated discs, normal at 44 years old. Could that have changed over 2 years? Mmm ...I'm starting to suspect it's all about my horrible low level of ferritin. In 2019 it reached 18 and in 2020 just 8.
PS: I was also surprised at the new results of b12! It seems I absorb a LOT from the pills.
Tinnitus can be a B12 issue but also can be affected by gluten. I still think the rapid increase in B12 may be too good. The fact that it is in your blood does not mean it is getting into the cells as I found from my own and family experience. And methylation issues are involved in MS along with all demyelinating conditions. Have you been checked for coeliac? Sometimes low iron that is hard to raise is the only or an early sign of a gluten disorder, so you'd have to rule out coeliac, even if gluten intolerance is more common.
I had the celiac test and it came back negative. Nevertheless, I hava the "gene" that predisposes you to have gluten issues, so I,ve just decided to eliminate gluten from my diet. In your experience, how are methylation problems resolved or lessened and which is the Main cause? Virus?
Eliminating gluten sounds like a good plan. Bear in mind that some are sensitive to the things that bought GF is predominantly made from - corn (maize), tapioca, rice, potato etc so you may need to ditch more than just wheat. I no longer eat any.
Methylation is complicated. Your genetic test should have given you an idea of potential weaknesses but means nothing functionally, and you can exhaust capacity without having a genetic SNP or SNPs anyway. You may have some SNPs that could speed up your processing and some that slow it down, so how do you know which, if any, are actually affecting your health? Have a read of purehealthclinic.co.uk/deto... including the two factsheets and the cautions. Some of the links are old and no longer working, but you'll see that it is not only the methylation, but also how we deal with waste products generally. What suits one, with their mix of genetics and epigenetics, will not be right for another. I changed lifestyle, diet, everything really. A small amount of methylfolate was useful to me, but some find that riboflavin helps more (which I use as well, plus vit C, magnesium, lymphatic exercises, vagus nerve too). I tested function, not just genes. chrismasterjohnphd.com/blog...
Is your B12 a methyl or other? Some cannot tolerate methyl groups at all, some need more.
Viruses can be one of the many potential epigenetic triggers, as can vaccines (some say), gluten/food intolerances, chemical/toxin/mould exposures etc etc.
Yup - my feet drive me nuts . Have told GP - ‘Shrugged’ - not interest
Told Endo at last consult ‘could be anything’
Interested to know what your gp says …
• in reply to
Err is it a cold or Flu??? Err Err Err Err? No idea you present Difficult Symptoms here take some anti depressants! Next Please.
I think it was slightly more polite than a shrug of the shoulders.My chiropodist used a giant tuning fork to see if I had lost feeling - and I could feel no vibration from it at all in my feet - but I could feel the touch of the metal on my skin.
It’s amongst the list of symptoms I emailed to go with my notes .
This really started a year ago but in the past I have had really painful burning soles from time to time which was agony .
I’m waiting to hear from Endo this week : I am now under medicated and need an increase - so hoping to discuss that .
Good luck with GP : mine is uncontactable - I rang our local CCG on Friday to ask them to look into what is happening at that particular practice ………ie, are they having phone and IT problems ……..said they would call me back . Ho ho ho
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I have mentioned this four times to different Drs and the last one did actually touch my foot and ask if I could feel it. When I said yes - next please!! Now pains are creeping up my shins. Have tried B12 etc but no improvement xx
Hi there. I suffer from hypothyroidism and also inflammatory arthritis. I get these pains from tome to time at the junction of my toes, particularly in bed at night. My rheumatologist suggested it was Morton’s neuroma. Mine are bad for a few nights and then ease off. Not sure what you can do about it. My husband suffers from peripheral neuropathy but says that is quite different. He complains of numbness in feet and up his shins, making walking an unpleasant activity. Perhaps someone more knowledgeable can tell us what we are experiencing?
If you have Morton’s neuroma you need at least a guided injection to try to shrink it. If it’s really grown you may be sent straight to surgery. You need to be on the case. My GP left me until I went private when I was injected within a week, that failed so I needed surgery. A few years later it had grown again and I had more radical surgery about 12 years ago. Mercifully no relapse of Morton’s. You need to push for a treatment plan. No rheumatologist should diagnose and then leave it. You need a second opinion if no treatment is planned.
I get these too, exactly as you are describing, very sharp and stabbing and mainly in toes and feet but sometimes ankles and very occasionally somewhere else seemingly at random. If it's any comfort I have had them for decades and although very slightly worse now than when younger, still bearable. I would absolutely love to hear from you if you find an answer and especially if someone recommends a cure.
Sadly you are not alone. Since i had the vax, the muscles pains have got worse and worse and my TSH has gone to over 8. My feet now feel like I am walking on buzzing sharp sponges, the only way i can describe it. They also feel like they are sitting in cement or plaster which doesn't set. I have sent away for some quite expensive socks which are supposed to help but I daresay will be a rip off. My medichecks blood test came back with over the range B12 which i expected as I hadnt left off the supplement but TSH 8.27 and T4 and T3 on the low side. I had paid for a nurse to come and do a venous test so that I could get the draw done early morning before breakfast . So I spoke to the GP, he ignored Medichecks and examined my feet and took blood tests. All came back normal apart from ferritin a bit low but acceptable and of course TSH was slightly suppressed just under 5 as the GP took the bloods in the afternoon. He first suggested either a rheumatologist, neurologist or geriatrician. When blood tests came back okay, guess which suggestion!!!!!! Great!!!!!
Ha ha, increase!!! I am not even on anything. Gp says thyroxine can sometimes help and sometimes not but it causes heart disease. I didn't know that, knew it could cause osteoporisis taken long term.
To be honest, I never usually take note of what Gp's say, after my really poor experience with primary hyperparathryoidism, but that stuck in my mind. However, I have just googled and wonder if he is right but why would he not want to give it to me. It says high TSH and low T4 one is more susceptable to heart problems thyroid.org/patient-thyroid...
The following link may be helpful: suzycohen.com/articles/smal... 'Small Fibre Neuropathy' = SFN or 'Small Fibre Polyneuropathy Neuropathy' = SFPN are two different names for the same condition which, according to this link, has only recently been identified. This could be what you are talking about.
There seems to be no cure for this except to get your t3 high enough in range perhaps . I am better now my t3 is over 6 - I can bear to have my feet under the covers at night for example. I occasionally take a couple of naproxen - it does nothing that day but improves things the next day.
Ah, the old pin fairy! I think there are more than one here as I can get stabbed in a number of places very quickly. Her favorate spot is the end of my big toe, but she likes my bum and has occasionally crept up as far as my shoulders.
I find holding a glass of red wine in my hand helps, as I dont want to spill it and so am not tempted to swipe at her. Sometimes she gets exited and really goes to town and I am dancing round the room doing the German slap dancing.
No, I have not found a cure. Cursing at her helps.
LOL! But curious if it feels like a bee has stung you. One time it happened as I was crouching and I shot up wondering where the bee was. Later I had a tiny eruption in that spot. No, I was indoors, no bees. Another time I jumped up after feeling this pinprick (but it wasn't a prick, more like a jab) just over my shoulder. I have a little scar tissue in that spot. I haven't had been able to discover exactly what happened but certainly it is something going on with nerves.
I’ve had nerve pain since my NDT was pulled off the market and I had to take a different one. So I increased my dosage slightly, and the pain is getting better. Could be you’re under medicated too.
Neuropathy takes on many mantles making itself known in our bodies it seems. I was originally diagnosed around ten years ago. My feet suffer rather different pain to my legs, both are prone to serious cramp. My right and left hands are slightly different which could be due to the extent of osteo arthritis or the fact I have de Quervains in my left wrist. I find taking Pregabalin and Immipramine ease neauopathic pain and I use magnesium spray for cramps. I have co codamol to take when things are grim an£ six monthly steroid injections for de Quervains.
I do not know if my neuropathy is linked to hypothyroidism, diabetes or just one of those things. I try not to link everything to hypothyroidism otherwise I might sound like a broken record in my own head!
When my husband complains of leg discomfort to a neurologist during investigations for Parkinson’s m he got the all clear mercifully, he was sent for testing and diagnosed with ‘short nerve damage’. Basically that’s neuropathy but he prefers the short nerve damage description because he can tell me I don’t understand the pain he has. 🙂
Hello there! I have the same symptoms!! Everything started after my Thyroid was attacked by a virus and could never recover. I'm taking levo now but symptoms continue. SO, i'm focusing and working on nutrient levels now: ferritin, b12 and D.
I was diagnosed more than 15yrs ago with PN & joint hyper mobility - a long time before thyroid. Majority of the time it’s pins and needles constantly in the feet, lower legs and hands. But Occasionally I get it in the face and scalp too. I used to have a lot of pain in the feet, cramps & stabbing pains and burning sensation on occasions. I was sent to an NHS podiatrist who fitted me with half insoles as my arches collapse when weight bearing, it stopped the pain but did nothing for numbness/ pins & needles. I was prescribed various prescription drugs for it but none of it did anything so I stopped taking them after a few years. Now I just live with it and ignore it, unless it goes into my face and flares with TMJ, then I just take ibuprofen for a few days to calm it down. It’s a pain in the backside and annoying at others, but I can live with it, better than taking the drugs with the horrendous side affects of them.
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