Help!! Is it ever going to end??

[Carlabear]

I started b12 every other day from September then once weekly from November. My weakness improved straight away, more energy and generally felt a bit better. My neuropathy in my feet decreased a little but this last two weeks my feet are unbelievable!! They are BURNING constantly ☹️☹️ please someone tell me the b12 has finally started to get in my cells and that is the nerves repairing??? I’m starting to lose hope!! I’m worried that it’s never going away and it’s unbearable. I take folic acid to support b12 and vitamin d etc. I appreciate your time. I’m just booking in for a blood test to see if anything is off.

[clivealive Forum Support]

Hi Carlabear ironically some symptoms may appear to get worse before they get better and yes, it may well be due to the B12 repairing the damage done to your nervous system.

Are you still on "one a week" injections? You may need to go back on loading doses "until there is no further improvement" in accordance with N.I.C.E guidelines.

Sadly there is no set timeline for recovery as we are all different.

I'm not a medically trained person but have had P.A. (a form of B12 deficiency) for 46 years so don't "give up" you may just have to learn to be a "Patient patient".

I wish you well

[Carlabear in reply to clivealive]

Thank you so much @clivealive it’s so hard to be positive when you’re suffering. I might go back to every other 😀

Just wondering if anyone else has been through similar?

Thank you

[cquadros in reply to Carlabear]

Hello Carlabear

I'm also with B12 (hydroxo) every other day since last June when my PA was confirmed. My feet are still burning a lot and I feel weak and tired, even though I manage to work out 5 times a week and have a busy day as a paediatrician.

From everything I read so far (and that means a lot!), it can take months (even years) for these symptoms go away (actually, it's possible I'll never have a complete recovery). Besides B12, I also supplement with vit D, folic acid and (for the past 3 weeks) alpha lipoic acid... I tried Lyrica and Cymbalta for neuropathy, but had a lot of side effects.

So, as Clive says: I think we just have to be patient...

[ljmulledy]

I am four years into treatment and finally feeling 'normal' and consistently good day to day. Most of myst symptoms have resolved but personality changes have become permanent. I take folic acid in the form of L-methyl folate. Hang in there. It takes time for the b12 to build and repair. Day by day. Meditation really helped me cope.

[Marybrown06 in reply to ljmulledy]

Hi ljmulledy, It's great you feel good now!

How long did it take? Which symptoms disappeared first?

When you say personality changes have become permanent, what are you referring to?

[ljmulledy]

The first symptoms to disappear were fatigue and the sighs. I use to gasp for air. Slowly my depression, more like a despair that i wished to die in my sleep, began to lift. Maybe this was attributed to my exercise regimen and practice of gratitude as a was to lift me out. Irritability and brainfog cleared. It took at least a year for me to feel better. I missed 8 months of work. As far as personality changes...the woman that went into the bed is different than the one that is writing this response. I am more deliberate and mindful. I am more confident and cocky. I have no time for BS and and not shy about expressing it. I dress differently, act different, feel different in my core. I have difficulty with emotional attachments...meaning i know i should feel love for people but i feel love because i know i should not because i feel it. I spend much of my time alone. I have moved away emotionally from friends and family and i am content. I don't miss the company.

[Vitb in reply to ljmulledy]

That is a drastic personality change you describe.

Do you feel better emotionally? Or lonely ?

M

[ljmulledy in reply to Vitb]

I never feel lonely because i don't feel attached to people. I feel better emotionally because i dont look outside myself for happiness.

[Carlabear]

@ljmuledy did you have burning/ pins and needles/pain in your feet?

[ljmulledy in reply to Carlabear]

Occasionally but not chronically. I had frequent tingling

[VICTORIA185]

That's a great post and good news my friend x