Methylcobalamin and increased nerve pain - Pernicious Anaemi...

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Methylcobalamin and increased nerve pain

Jcwg profile image
Jcwg
28 Replies

Hi, just wondered if any one else has noticed increased nerve pain when starting Methyl injections, I avent taken any for about 6 months and started again about two weeks ago.

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Jcwg
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28 Replies
Poppet11 profile image
Poppet11

I'm not quite sure what you mean but: when I was undiagnosed I rarely felt pain. I could burn myself and not know until I saw the burn. I also used to regularly trap my skin in a door bolt every single morning. It never hurt but it looked a mess because I'd done it so often.

After I started on methyl the first time I trapped my finger it hurt so much it reduced me to tears and I had to go back in the house.

Sound similar?

Gambit62 profile image
Gambit62Administrator

healthunlocked.com/pasoc/po...

comments by megan17 and myself might be of interest, though not specifically related to injections.

Last headache was a definite ice-cream headache that went very quickly and don't think I've had anything for a week now.

Poppet11 profile image
Poppet11 in reply to Gambit62

I used to get an ice-cream skull cap type headache after jabs - but I don't get it now. It wasn't much to deal with though because as you say it goes very quickly.

Jcwg profile image
Jcwg

It's more like a pins and needles on arms and legs, at night it feels like I'm being electrocuted, only slightly!

RipeBanana1 profile image
RipeBanana1 in reply to Jcwg

Are you taking the co-factors (folic), plus consuming enough potassium rich foods?

Poppet11 profile image
Poppet11

When nerves start to repair they give off little electrical shocks when they finally 'join up' if you see what I mean.

I only know this because I was injured in an accident and about a year later I kept getting all these little 'shocks' from the wound area.

I don't know whether it is the same thing with you.

A lot of people used to report, but I haven't seen it for a long time, extreme tooth sensitivity when they took oral b12. I suffered with this not even realising what it was because it was that bad. It affected all of my teeth all of the time. It was one reason I went off oral and on to jabs.

engels profile image
engels in reply to Poppet11

I suffered terrible tooth sensitivity with Jarrow methyl sublinguals if I allowed the tablet to come into contact with my gum. I took them under my tongue initially but found them totally useless so, as an experiment, tried putting one under my top lip. Big mistake. I couldn't brush my top front teeth for the next three weeks.

Poppet11 profile image
Poppet11 in reply to engels

Doesn't it make you wonder why, Engels, that we never see reports of this when they do all these trials with oral b12? Is it a situation where they just do tests and see what the end serum b12 results are? I know a lot of us used to report this problem, although I rarely see it mentioned nowadays.

engels profile image
engels in reply to Poppet11

The few reports on oral supplementation that I've read have all used blood serum B12 to judge its effectiveness. Totally useless.

Poppet11 profile image
Poppet11 in reply to engels

They simply aren't speaking to patients, are they? Not relative to side effects and not relative to how such treatment affects symptoms.

Like you say, totally useless.

in reply to engels

Yes I found the lozenges made my teeth sensitive, and my tongue sore.

in reply to Poppet11

Oh this is very interesting. I've just been looking at accident nerve damage and it seems similar. I also had my teeth hurt and didn't cop it. Shooting pains etc. So the injection didn't do that to you but the oral did? I thought I'd try food sources but it seems like at the end of thr day if my nerves come alive again its going to hurt somewhat. Be nice if it could be avoided somehow. May I ask did it last months or weeks or days for you? And did the injections have a different type of cobalamine in them?maybe I'm foolish to think I can somehow get around the pain. I've obviously been bashing my heel bones when I walk as the bone pain in my heel became apparent after only a week of b supplements. Couldn't out my foot down without feeling I was stepping on glass. Was there some excersises you got after you accident supposed to help rebuuld the nerves that's what I'm looking at now people who had injuries and what they did to regenerate... I'd be really interested to hear your experience.

Jcwg profile image
Jcwg in reply to

In the early days I went to Wales to see a private dr who gave me an infusion ( same size as saline bags etc in hospital) I reacted realy badly to that, the nerve pain increased for a long time, can’t remember exactly, but I do remember being fatigued for months n not moving off the sofa much, it was only when I started the twice weekly self injection of hydroxo that I became better, which prob took months if not years. I also started swimming and that has been a total life changer for me x

Jcwg profile image
Jcwg in reply to Jcwg

The infusion was methylcobalamin

in reply to Poppet11

How long did the injury take and did you have to do rehab excersises.

Jcwg profile image
Jcwg in reply to

The injury took years and still bothers me now. The swimming and light gym use has helped me function to a satisfactory level again. x

Jcwg profile image
Jcwg

Thank you poppet11, that makes a lot of sense, hopefully it will ease off.

Jcwg profile image
Jcwg

That sounds awful, I occasionally take them, I must admit I find them pretty useless 2 but Avent had any strange feelings in my mouth.

Polaris profile image
Polaris

I began using Pure B12 spray - 500 mcg Methylcobalamin a few weeks ago after researching for a close relative and then realising I was probably deficient myself (could not face any more frustrating dealings with GPs! )

I noticed that my gums, which for years had been bleeding on brushing, quite quickly stopped bleeding completely - a clear sign that it was working. Then, just recently, I began having occasional, mild tinglings down legs and arms on one side. It is really interesting what Poppet11 says about nerves healing, as this is what I'd been wondering, even though I'd not had any apparent or previous signs of nerve problems.

Could it be that signs of B12 deficiency take so long to manifest and are sometimes so subtle and gradual that we don't notice or just think it just the normal process of tiredness or aging?

in reply to Polaris

I know for my mom with diabetes the neuropathy kreeps up and numbs things and eventually when it gets bad it hurts then goes totally numb. She had to do hot cold foot baths and things and her feet tingled painfully before the numbness recovered to be feeling. Pity this is from seven years ago its the best thread about it.

Jcwg profile image
Jcwg in reply to

Hi, I went onto self inject hydroxocobalamin, usually twice weekly and my nerve pain has completely gone. I found the methylcobalamin did not agree with me at all x

in reply to Jcwg

Thanks this is good to know. I will try food but if my tinnitus start a to come back I know I'll need more than that. The irony is its been amazing for the tinnitus just horrific for every other part of my body..at leat the tinnitus is like a little alarm to tell me if I'm needing it. I'll have to try different types and just process kf elimination find one that suites me. thanks for the info.

Jcwg profile image
Jcwg in reply to

I can’t stress enough how much your body will need it, it might take a while if side effects but it’s definitely worth it. Anything else you would like to ask please feel free x

in reply to Jcwg

Well I am on the train to the city as I type!! Woo hoo! Managed OK todsy with less pains thankfully... So I can figure it out once I arrive. I've already ordered some beef kidneys to see if they will be tolerable source of it. And my mom might have a different kind of b12 that I can try she's got her own apothecary shop in her kitchen so I can try that and see how it goes. Its just how to get out of the frying pan and not end up in the fire if at all possible! I'll be near my Chinese medicine doctor too she maybe will give me something for the side effects or some advice for how best to get through the painful part. Thanks so much.

Jcwg profile image
Jcwg in reply to

Holland and Barrett have a b12 in a drop that I know someone tried and it helped them, think it was Methyl. Yes it’s not easy, unfortunately we ave to make our own road to wellness, I also saw a naturopath which I found helpful. Your mans cupboard sounds pretty much like mine. Good luck with your wellness journey, it is well worth it when you get to the other end x

aishling profile image
aishling

Yip, I get major tingles from oral supplements. And my gums go crazy, too. It doesn't feel like a good thing. It's an odd hot burning sensation. So I feel your pain.

I found the sublingual spray, to be very effective,I had no side effects, but still would not compete with B12 injections.

RipeBanana1 profile image
RipeBanana1

Make sure you're taking co-factors (folic) and potassium rich foods, or symptoms can worsen with B12.

The blood result is spoiled unless avoiding supplementation for four months (the length of time it takes for a cell to re-new), otherwise it also shows inactive B12 too. It's ideal to have an unspoiled test result on medical record.

Hope this helps!

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