I have however always had B12 and B co injections and always feel better when I do. I do have gut issues though and PMR which is an inflammatory condition. I have been on steroids for this for 3 years - weaning off very slowly.
I eat a lot of liver. I supplement with a B co food based suppplement but do not think that it is sufficient. I have Histamine Intolerance and so cannot tolerate the injections anymore. Also do not tolerate sublingulas. It is usually the additives. I tried sublingual drops with 2,500 ug - just with methl annd adenosyl - in vegetable glyerol and triple distilled water. I had reacted to it before - but thought I would try it again (in deperation)- I used a miniscule amount - thinking that I wouod build up - reacted immediately.
I wonder ifI could rub it on myself?
I have recently developed pain in my muscles of my forearms but more worrying is the sharp burning tearing pain under the ball and heal of my right foot when I flex it. But there is slight burning, feeling of numbness / discomfort there all the time now. It is also numb to the touch in those areas. Could this be from B12 deficiency or some other reason for nerve damage / impingment? This seemed to have come on fairly suddenly. My hand ae also going numb again when I sleep. Slight tingling in my toes.
Any suggestions as to how I can get B12 in?
Has anyone used the patches with sucess?
Thank you - I am so desperate. - I have also developed Osteoposrosis - probably steriod related and limited diet from the Histamine Intolerance.
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Slosh
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Just because the test for P.A. was negative does not mean that you don’t have P.A. About 50%of P.A. patients test negative for the Intrinsic Factor Antibody test. If you feel the benefits of B12 injections , have you thought of self-injection. There is no danger with B12 — you cannot overdose on it . Just inject daily until your symptoms stop improving, then as regularly as required to stop symptoms from returning .
Hi I've just been taking it for a bit over a week or so now. J am not pa either. Just haven't eayen well. I am getting shooting pains up my leg from my heels and my muscles are so sore I can hardly list the hoover...lots of sharp pains and a buzzing in my legs and arms... Did you keep taking it and did it eventually feel better? My feet are killing me now after a short walk. I felt like my hands wrrent working right either. I don't have any other issues. Just don't know should I stop. Maybe I am allergic to b vitamins they make me feel aweful.
Slosh...I note that you have PMR and are weaning off your steroids.
PMR can cause inflammation in the tendon sheaths (tenosynovitis) which can cause the sort of pain you describe - and it’s quite common in those with PMR. Inflammation and swelling can also put pressure on the surrounding tissue and nerves and cause numbness and neurological pain. Pain in the muscles (myalgia) is also common in PMR, as is fatigue, temperature, and a general feeling of being unwell.
So, I'm wondering if the return of your symptoms is due to the steroid reduction and a re-emergence of your PMR? From what you describe, this sounds to be more likely cause for your current symptoms.
It'd be a good idea to discuss this with your rheumatologist...and also perhaps consider whether there may be another underlying autoimmune condition causing your symptoms (unfortunately, autoimmune conditions can appear in clusters and having one can predispose the development of others).
At one time I thought my B12 deficiency had returned (despite having injections). I increased B12 injections but this made no difference. To cut a long story short...I was eventually diagnosed with lupus.
Sometimes it’s so difficult to tell because there are so many overlap symptoms between B12 deficiency and other medical (and autoimmune) conditions. I suspect the clue here is in the steroid reduction and a subsequent impact on your PMR.
I see you have posted on the PMR forum before so it might be a good idea to post there and see what the knowledgable folk there think.
In short, I think it’s unlikely that B12 deficiency is causing the symptoms you describe.
Having said that, it’s obviously important that if you have a B12 deficiency in addition to the PMR, then this needs addressing.
A couple of things...
Some people (me included) react badly to methylcobalamin - so it may be the form of B12 you are taking that’s an issue, rather than B12 per se.
If hydroxocobalamin injections are causing problems, have you discussed your difficulties with your doctor (hopefully you have one who understands vitamin B12 deficiency)? Has B12 deficiency ever been confirmed (via low B12 levels or clinical assessment/therapeutic B12 trial)?
If you are indeed B12 deficient this obviously needs addressing. Some who have issues taking B12 because of sensitivity (and this is very rare) find that taking anti-histamines along with their injection helps. And in extreme cases, some have B12 injections in hospital so that stronger anti-histamines can be given IM or IV, along with B12 injections. Sounds an extreme measure - but leaving B12 deficiency untreated is not an option. So...a discussion with your GP?
Just wondering if you are being treated by an immunologist for your histamine intolerance? If not, ask for a referral if B12 sensitivity/intolerance continues to be an issue - best speciality for dealing with these sorts of issues (assuming here, of course, that you have a B12 deficiency that needs treating).
Thank you so much for you very valuable response Foggyme.
I was diagnosed with PMR in January 2017.
My B12 has always been high - because I have always supplemented / injected.
Since developing Histamine Intolerance I also react badly to anti-histamines - go figure!
I suspect that perhaps I should not take methylcobalamin - but this is more a feeling than anything else.
In South Africa I routinely had cynovobalamin along with B.co injections with no problem.
Since coming to the UK - I continued with those when I could get them and then changed to Hydroxycobalamin with no problem.
But in Dec 2018 I had pneumonia - very strong antibiotics / steroids / antivirals I started reacting to all sorts of things including the reaction to the Hydroxycobalamin injections.
My doctor is of the opinion that my B12 is too high to have a deficiency.
Seeing an immunologist on the NHS that could put it all together - I suppose would be luck of the draw. My comment comes from my experiences with rheumatologists.
I am seeing a medical doctor that now practices functional medicine so will run it by her as well - and will post on the PMR page.
Once again I thank you for your time and response to me - it has been most valuable.
Know what you mean about rheumatologist Slosh! I've only ever had one good one - took me a long time to find her, but then she retired. So now I'm looking again! Many seem shockingly lacking in knowledge - especially when it comes to anything that goes beyond joints!
When Lupus emerged, I to started reacting badly to many things - I get adverse drug reactions to the majority of drugs used to treat lupus (well, so far, at least 🤷♀️). Apparently, it’s to do with deranged autoimmunity - the body just goes 'crazy', in an autoimmune and immunological sense.
Just a thought - have a read about mast cell activation syndrome - rare, but goes had in hand with deranged autoimmunity - may (or may not) be worth pursuing (though many rheumatologist have never heard of it).
I think immunologists are much more switched on that rheumatologist - they look at the body and it’s workings holistically and are very good at piecing together the whole picture from often complex bits of the puzzle (a bit like detectives v traffic wardens (no offence intended to traffic wardens).
Sounds to me like you need a very good rheumatologist who understands autoimmunity rather than just joints. Also think a good immunologist may help identify what’s going on - and perhaps guide a rheumatologist in terms of treatment plans / management options.
You could ask for PM's with recommendations for both specialities on the PMR or LupusUk website - or ring LupusUK for rheumatologist recommendations. (Not suggesting you have lupus but rheumy’s with an interest or expertise in lupus often have more knowledge about complex issues to do with autoimmunity).
I know how tricky this all is so very best of luck. Hope you find a medic who can help you. Would be interested to hear how you get on. x
When I had the condition I found it excruciating to put my feet to the floor after a night's sleep and when walking downstairs my feet and ankles wouldn't bend without a lot of pain.
Usually the pain in the soles of my feet and in my ankles would wear off within an hour in the morning, but would recur every morning after waking up or after any substantial time spent spent sitting.
My problem was low Free T3 and poor levels of nutrients. Having fixed both my feet don't hurt in the morning any more.
If you want advice about your thyroid you could join the Thyroid UK forum on this site :
If the pain came on suddenly then it is unlikely to be related to B12 - there are a lot of bones in the foot and nerves running through that maze of bones and ligaments can easily get caught and the bones and ligaments can get easily damaged. Have you had a trip of an incident where you impacted with a sharp stone?
Because the foot is such a maze there tends to be very little that can be done if a small bone is broken
The hands may be helped by wrist posture - avoid bending the wrists whilst sleeping ... or it could be nerves getting trapped in the neck - a nerve conduction test should help with identifying if there is anything like that going on.
Rubbling B12 into the skin isn't going to help - if you have an absorption problem your options are very high dose oral, high dose nasal, injections etc but I would really suggest that you consult a medical professional rather than assuming the problem with your foot is just down to B12
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