I’m hoping to gather experiences from the group to see if other people seem to get the same sensations as me after a B12 injection.
I seem to get increased sensation of tingling/electric current through my legs and burning soles of feet after B12 injections alongside a gnawing ache in my calves as if I’ve run a marathon - does other people get this?
Absolutely fed up of this condition and how it’s getting worse by the month and as I increase injections - it’s been 7 months since loading with c.20 injections at varying intervals and I’m getting worse symptoms than before I went on loading doses - so fed up!!!!....
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I really do hope it’s a sign of healing - just hope it’s not lingering for another 7 months
Yep, feet are the weirdest of sensations, like wearing socks and sensation of being in a jacuzzi and putting them over the water bubbles....
Bizarrely, I don’t have any indifferent sensations in arms or hands
Maybe I’m looking at things too simplistically but I’ve told myself that I need to go through the frustration with intense treatment and get to the other side of these bizarre symptoms and then onto regular maintenance doses.
Hello, I have been loading oral 1200mg B12 for 2 months now (my doctor doesn't want to give me injection as he said study show oral is as effective). It exactly what I'm feeling, like every nerves is in over drive. I feel tingling, burning, partial numbness in different part that change during the week/month (arm, feet, face...), electric shock, pain... I didn't had these neuropathies before loading B12 and that often keep me awake during the night. When you said you got worse before going better, how much time it took your system to calm itself? I feel like crap most of the day. Do you have any medication or tips for me?
Not straight way. I wa badly plagued by debilitating different headaches daily for a long time I still get head pains and on going head tightness , what I would call tension headaches now.
Not daily but my head is never 'normal '
One neurologist said ongoing in the background with tense nuchal muscles involuntary. Nothing to do with tension or stress.
This didn’t happen to me , but having been on this forum since 2016 , i have read so many times that PA patients so often get worse before they get better . So just press on with the injections and try not to be impatient ( easier said than done ) Best wishes .
Hi, I had the tingling and numbness in my feet when I was first diagnosed with Pernicious Anemia around 3 years ago. How often do you get your injections? I don't get side effects after injections. It would take about a week after getting an injection to get back to feeling well again. My GP has now put me back to monthly injections for a bit to see how I go. I was on 3 monthly injections until 2 months ago. I would just go downhill about a month before I was due for another injection. Severe tiredness, brain fog, loss of balance, had trouble putting words together. This is an insidious condition. My family were aware when I was going downhill. My work colleagues don't really understand the condition. I work in a stressful frontline position dealing with a lot of people all day. I found it embarrassing when I would start talking and couldn't get my words out. I live in Australia, and I have a very good GP. Here we can obtain our B12 vials for injection over the counter at our local Pharmacy. I know if you live in other parts of the world it is much stricter.
User 2020-1, it isn't uncommon for people to experience symptoms seeming to get worse for a while - most common ways in which this seems to occur are a) more neurological symptoms. B12 plays a part in the process that resets neurotransmitters so it may be that this process starts working more efficiently all of a sudden but the brain takes a while to catch up - I think of that as being like listening to an old analogue radio and having it turned up to full volume because the signal is weak. If the signal gets strong then it is deafening for a while, until you find the volume control and turn it down.
b) cold symptoms starting - B12 supports the immune system - and many of the symptoms we associate with infections - eg runny nose and high temperature - are actually the immune system fighting the infection.
It took me a long time to get to a place where I actually had all of the B12 I needed (15 months) but once I did life was so much better so please hang on in there. What really helped me wasn't actually injections but frequent use of a nasal spray - and sublinguals.
Given the time it may be that something else is going on, eg have you had other vitamin and mineral levels checked - and there are many conditions that have similar symptoms - it may be worth asking for a referral to a neurologist.
I’ve had everything checked from Ceoliac to Potassium and the only thing that came up alongside the +ve PA was elevated Ferritin from a multivitamin supplement I was taking that had iron in it.
I’m hoping the tingling is nerve regeneration as it wasn’t there when I was first diagnosed BUT this is not getting better and I’m 7 months in 🤯
I believe it’s a good sign, that healing of the nerves is going on. I had this feeling intensely after starting treatment. The tingling has gradually stopped over two and a half years but I do sometimes have the burning at night. I still have some numbness of my feet and toes so I wish I had more of the tingling and burning as in my case that meant healing of the nerves.
Once the lump of felt like toes began to go away after beginning injections then came the tingling and burning sensations in feet and hands getting worse in the evenings. I couldn’t sit still with it.
I started putting my feet into a bowl of hot water, cold just made it worse, and found that to be a great relief. It became an evening ritual whilst watching the telly.
A hot bath before bed also worked.
There would come a day when this didn’t work so that became the re-injection day.
After a while the hot water treatment wasn’t needed, just the injection.
Then I started using a couple of codeine 30mg tablets and they also did the same thing so when the tingling came back the needle and syringe went into operation.
Over time I got to the point where re-injection was after a couple of days. But then it would stretch out again. I am now up to 14 days. Still taking a couple of codeine in an evening.
The haematologist cannot see any route by which this could work so will not support it. She does agree I have PA so perhaps that is something.
To my mind what works for you then it can’t be bad.
I have tingling feeling in my toes only in my right foot. It's very annoying. Mainly at night but can happen in the daytime too which makes me uncomfortable and irritable. I have three month b12 injections for 9 months with daily folic acid tablet. Having the tingling only in my right foot makes me think it's the nerve under my middle toe that's the problem and not necessarily due to b12 deficiency or the injection. Really not sure.
Hey, I am sorry you are suffering and totally empathise as I had the same symptoms. It took at least a year before my feet were ‘normal.’ But please don’t despair as we are all different.What helped me most was, starting with using the Cool Patches for headaches. Then I know I was extremely fortunate, when after attending NHS Pain Clinic a number of times, and persisting that they do something more than ‘talk therapy in a group, I was given Lidocane patches to try. They were brilliant & I was able to have them on prescription. However, they are hellishly expensive, I you may not be fortunate enough to persuade your GP. If use the carrot that if they give you a trial on them, and they work, then you will heal much faster!
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