I have been unwell for 7yrs with diagnosis of chronic fatigue syndrome. Recently my gp checked my B12 109ng/l. I had 6 B12 injections over 2 weeks and my paraesthesia improved. It went away almost completely after about the 4th injection. Two weeks after injections stopped it returned and got worse over a few days. I requested further injections and was told my paraesthesia was not due to myB12 levels. So to keep symptoms at bay ( I have loads - fatigue, brain fog, irritability and insomnia being most distressing) I have been taking B12 about 10mg at least daily over last month and they have got a little better but not resolved.
My question is does my description of my paraesthesia sound similar to anyone else’s experience?
Initially it was quite intermittent. I would typically get it as I was waking in the morning. It felt like a wave of tingling flooding through my arms and as it got worse legs. It has gradually got more frequent and intense until before the injections It felt like I was awake all night with this - very unpleasant! I also more recently and since injections have had constant pins and needles in my feet (worse) and hands. Associated with return of worsening mood (very changeable with anxiety, lowness and irritability), fatigue and insomnia.
So I was just wondering if anyone else has experienced similar intense, intermittent waves of pins and needles type feelings? And whether others have noticed their paraesthesia to be worse late at night or first thing in the morning?
Thanks for your help. It’s been really helpful to read people’s posts here and to have access to the PA website.
Thalia
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I agree with you I think the evidence points to B12. When I asked my GP why she thought they weren’t she couldn’t say but did say she would speak to an endocrinologist - I suggested a haematologist but don’t know if she took up that idea - I am still waiting to hear.
And yes my folate levels are fine. Vit D low normal range and winter is coming so I have started supplementing. Ferritin low normal but no sign of fe deficiency anaemia on fbc. I am taking a vitB complex regular dose so hopefully folate and other B vitamins will be fine.
I think the only way to really know whether symptoms are B12 deficiency is as you say by trial of treatment. Without that potentially I could remain symptomatic and even referral to neurologist won’t help - I could become one of those chronic, progressive, can’t be treated neurological conditions. Having said that I will request a neurological opinion if my gp does not think it’s B12 as it would be foolish to ignore neurological symptoms.
I experience a paraesthesia identical to that— a really horrible prickling feeling that comes and goes and is especially bad at night. I was diagnosed about a month ago with a serious b12 deficiency so I’d say that could definitely be the cause for you as well (especially if b12 helped with it before).
Is the daily dose you’re taking sublingual or just a pill? I’ve been taking sublingual to boost between my shots since oral pills didn’t do anything for me.
Sorry you have to go through this too & hope this was some help! - Al
That is interesting to hear someone has experienced similar sensations. Pretty much only at night for me though recently I have developed constant low grade pins and needles day and night. But I agree the waves of paraesthesia were very distressing especially when they started being all night long and caused bad insomnia.
When the paraesthesia (+other symptoms) returned 2 weeks after my loading dose of 6 injections I took loads of sublingual B12 maybe about 10mg or more whilst trying to persuade my go to give more injections. This didn’t make symptoms go away but stopped them getting worse. As the whole process is taking so long and I am not sure I will get injections from the gp I have just started self injecting. I want a proper trial of treatment as I am 99% convinced that my problem is b12. The more I read about it and find out the more convinced I become. Also I can’t bear the thought of going back to being exhausted, unable to think, irritable and generally not the person I used to be.
I hope that your treatment works for you and you get enough b12 to deal with your symptoms. Thank you for replying.
Very similar to mine and B12 injections improved it. However I still have residual fatigue and pins and needles and pain which is now getting worse despite the injections. So a private doctor has sent me for tests for other autoimmune disorders. She suspects rheumatoid arthritis on top of B12 deficiency. Tests are this week so fingers crossed I get a helpful diagnosis. Good luck with your recovery.
Thank you for replying. It’s interesting to hear that people had similar symptoms and helpful for me since my gp is saying my paraesthesia isn’t b12 deficiency.
I hope your other problems get sorted. Unfortunately they often come together. I had thyroiditis but I have had my thyroid out so hopefully one less thing to worry about.
Yes. I was told I might have chronic fatigue or maybe fibromyalgia. I have been exhausted for at least 25 years. I didn’t know that the pins and needles in my finger were b12 (I was told trapped nerve) or my toes going numb (I was told after something was dropped on it nerves might not repair).
I cannot get my doctor to listen to me despite paying for private blood tests which showed low but not rock bottom levels (I was already taking tablets by then) and eventually injections. He does not believe that it is anything but a placebo. It is not but I find it hard to go up against him. He is very dismissive of me.
After the pandemic I was forced to self inject as the clinic I went to had to shut. I started off every other day but stopped as it was too intense (I now think this was a mistake). I have now restarted every other day and I sometimes have brief periods of feeling my whole right side with no pain. The symptoms are shifting, first the pins and needles were inside my limbs but now they are on the outside of my limbs, on the backs of my hands and the top of my feet. I think I simply hadn’t noticed any numbness there.
I am going to continue with every other day. I have had periods of thinking ‘oh shit, I’m making it worse’. But the longer I continue, the more sure I am that I am doing the right thing. I may try and move doctor at some point.
It does sound like you need another doctor who can support you properly with your treatment. If you are injecting safely you can’t do any damage but it still takes courage to do this self treatment. Unfortunately it does seem lots of gps just don’t take it seriously enough.
It sounds like your nerves are starting to wake up. I am sure it will be worth it but it may take some time. Don’t give up!
You need to see a neurologist - this could be any one of a number of conditions, even if it is likely to be B12 deficiency. Those with neurological symptoms should have a different treatment regime, so for that reason alone, I'd continue with every other day injections while you wait for a referral to a neurologist. The cause of paraesthesia can only be determined by a specialist.
I remember getting a horrible feeling through arms and legs down to hands and feet which felt like it was quite near to skin surface. Not painful.
It made me think of the experiments we used to do at school with iron filings and magnets - making the small filings flip over and over and over.
Others here have identified this as "formication" - a feeling of ants crawling beneath your skin. It is listed as a B12 deficiency symptom.
This feeling always immediately preceded complete exhaustion and need for sleep.
So, for instance, if I went supermarket shopping: dizzy, confused, too bright, too noisy, inability to concentrate/ choose/ keep track of shopping list etc ... home, yawning all the way, then throwing things into cupboards and fridge, desperate to finish, then the horrible feeling would take over... and finally crashing; 2-3 hrs of sleep on the sofa.
I also used to wake with very stiff feet, and would hobble. It usually took a few hours to get going in the mornings.
These are both gone completely now. I think frequent injections helped more, less frequent less so.
Persevere. But also please get a referral to a neurologist - even if you are convinced it is B12 related, a record of having neurological symptoms could help you get the correct frequency of B12 given, especially if the neurologist advises it in report to GP.
Thank you. You are right - neurological symptoms should always have a proper diagnosis.
But while my gp consults with hospital consultant time is passing and my priority is not to be as unwell as I was before the loading dose. It is amazing how time passes. I initially complained about the paraesthesia back in August. My symptoms were long standing but worsening so I don’t understand the reluctance to treat.
Anyway whilst this is going on I have taken large sublingual doses with some small benefit and am now self injecting. They can look for an alternative cause but there is no way of excluding b12 deficiency without an adequate trial of treatment. I know that’s stating the obvious as it’s why so many people are having problems but it helps me to have a logical argument to support what I do.
Just looking back again over your notes. I too had incredibly painful feet in the morning and would start the day hobbling - I just thought I was getting to the age where you get arthritis and that was that. But that also has been better with the injections.
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neuro symptoms for a year before diagnosis of b12 deficiency
b12 neurological symptoms 
Neurological Symptoms of B12
Could my issue be b12 related or not with these ranges.
