Update at 5th week into self treatmen... - Pernicious Anaemi...

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Update at 5th week into self treatment...Things DID get worse before they got better...pains, acne and oh hello brain!

0SK780 profile image
5 Replies

HI All,

I am feeling weirdly positive and in what I assume to be an almost normal frame of mind mentally (hard to judge as I've had depression/anxiety my whole life) I want to share how I feel just over 1 month in and the positive and negative side effects of my B12 shots so far.

A month ago before starting self administered B12 injections (1000mcg Cyanocobalamin) I had brain fog so intense if I left the house I would just end up frozen because I didn't know how to make a decision anymore (like to go right or left, how to get the change out of my purse, which foot to move first, so I'd just stand there figuring it out - I'm not joking here) I'd lose my sight suddenly as everything blurred for up to 30 seconds at a time, numbness and disassociation with my own limbs, stuttering, memory loss (intensely bad), extreme fatigue (back to bed exhausted after being up for 3 hrs) anger, outbursts, hitting myself as I couldn't express anything and was so frustrated and scared. I lost my job as writing an email became impossible and travel would see me breaking down at airports in terror and calling my hubby sobbing.

Loading doses - 1 per day for 7 days - then every 2 days for 3 weeks - currently switching down to 1 per week (all told 17 injections within 32 days)

I didn't feel any change until about end of week 2 and then it was change for the worse, the slight nerve pain I'd been having ramped up to such an intense level inside my legs (thighs felt like a hot rod was inside them) that I needed a painkiller to help me get through the day and to sleep, the burning in my feet got worse and my muscles were wracked with aching pain. I'd wake feeling like I'd done weightlifting in my sleep, I didn't know if it was the B12 shots or I was showing symptoms of MS or Fibromyalgia or what . Pressure like headaches and nausea started to be an all day thing, moments of breathlessness, this lasted about 8 days and then thankfully started to wear off.

I could feel my mind was coming back but was too consumed with worry over my physical self to really take it in. At around 3 weeks my face erupted, huge deep cystic acne, I've had bad skin all my life but it calmed down a couple of yrs ago , I had my worst outbreak in my 20's and it left scars, this outbreak is worse (it's still ongoing, I can only assume it's B12 related). The only area there is no improvement at all is my hair loss, sadly it continues to fall out in droves :(

I'm taking Saw Palmetto for the last 4 weeks but no joy.

Overall I am still in a bad situation and 5 weeks ago all I wanted to do was end my life, but now I can feel some happiness, when I have no reason to, if anything my domestic/financial situation is worse but yet I feel better able to cope and find pleasure in small things.

I found an old blood test I had done 12 years ago, the signs were right there (macrocytic cells) but I was told everything was fine. I wonder if when I'd first gone to my GP at 17 complaining of stomach aches, anxiety and panic attacks I just needed my B12 checked instead of 20 years of head meds? 22 years later and I'm daring to hope I can lead a normal life finally!

I love this forum for the support and the great info in the hundreds of posts I've read :) I hope those of you beginning your B12 journey can draw some info + inspiration. If things seem to be going pear shaped hang in there. I'm far from 'cured' but also far from where I was 5 weeks ago.

Thx

S

XXX

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0SK780 profile image
0SK780
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5 Replies
clivealive profile image
clivealiveForum Support

Hi 0SK780 hopefully "things can only get better from here on in".

Thanks for letting us know your "journey".

Make sure your Folate level is good

I've been having cyano injected every month for more than 45 years and I'm still "clivealive" and over 75 :)

Dani82 profile image
Dani82

You have described my life! X

Gambit62 profile image
Gambit62Administrator

glad that you have been able to recognise improvement and thanks for posting your update.

Unfortunately acne can be par for the course - especially if you have had problems with acne in the past - and it can tend to return each time you have a shot. Have you tried speaking to a pharmacist to see if they can recommend any skin washes that might ease the situation - the cause is likely to be microbes on your skin reacting to the B12 and secreting toxins - hence the suggestion about looking for a suitable wash.

kirsten555 profile image
kirsten555

So glad you're feeling more upbeat and positive about the future - I know exactly how you feel! Getting your life back again is the very best thing and feels like a miracle, doesn't it? I'm not back to normal yet (maybe never will be completely) but the improvements are wonderful and something to be celebrated. Well done! Good luck! xxx

KimberinUS profile image
KimberinUS

Hi there, im so glad you are feeling happier. That brain fog is aweful.

Zinc might help with the acne and potassium and/or magnesium may help with the muscle soreness.

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