Worse before better???

[Simplicity17]

I'm just curious if anyone has noticed worsening symptoms of peripheral neuropathy when starting B12 treatment? Just when I think I'm starting to get SOME feeling back in my feet/legs, the nerves get numb again ~ sometimes even worse than when I started. Thoughts?

[pvanderaa]

These worsening pain symptoms are an indication that your nerves are healing. It is counterintuitive but as the myelin sheath is repaired the signal to the brain is stronger, which it interprets as increased pain.

It is sometimes hard to do but if you can convince yourself that this pain is an illusion and is really a "good" sign, your stress level drops and the brain recalibrates faster to the stronger signal.

This recalibration typically takes 2-3 days at which point the pain disappears.

Keep a logbook of your symptoms and the ones the repeatedly appear after each jab can be selected as marker symptoms of your progress.

The progress is very slow I.e months and years, so try to assess the severity each time and monitor over the long term.

You will also have a roller coaster of other symptoms show up so being able to identify and pick these out of the noise is a challenge.

The worse these symptom are after the jab, the lower your B12 was before the jab and indicate that probably need more frequent injections.

Are you supplementing with folic acid, B6, B1 and a daily multivitamin ?

[Simplicity17 in reply to pvanderaa]

Thank you. Incidentally, not so much pain (definitely has been some burning), but NUMBNESS!!! Which I'm going to take from your kind explanation, is due to the same healing process. Only because it has gotten SO much worse since I've started treatment, that it must be related to the B12. Foolishly you think to stop, as if the B12 is just making it worse...when you have to tell yourself how ridiculous that sounds.

I'm editing this entry because I have to extend a major 'thank you'!!! Looking at this now from a different perspective has DECREASED the pain sensations I'm feeling in my feet! Mentally knowing that the B12 is healing my nerves, not exacerbating the problem, has made all the difference!!!

[pvanderaa in reply to Simplicity17]

The logbook supports the memory loss as well. I forgot how much worse My marker symptom was at the time of my previous injection.

You will gain confidence and eliminate stress as you begin to see slow progress.

Stress consumes B12 and just makes matters worse.

[Simplicity17 in reply to pvanderaa]

Sorry to bother you, but something you said really interested me. 'The worse the symptoms are...the lower the B12 was'. Could you elaborate, as I notice the more methyl B12 I ingest in given day, the more pronounced the numbness is in my feet. I expected it to start improving, but it just seems to be getting more intense ~ which is why I think some folks throw in the towel. Thank you, again.

[Simplicity17]

Yes...it's peripheral neuropathy due to megaloblastic anemia from B12 deficiency.

[chrisbuy63]

Hello, I have been injecting for over 6 months but this past week I have had extreme numbness and pins and needles in legs and feet and tips of fingers, it is slightly better today but I too thought I had overdone it or something. I think for me it might be due to taking methylfolate so I have stopped for a few days to see if it settles down. I hope you find yours improves soon with the healing that is going on.

[Simplicity17 in reply to chrisbuy63]

Thank you for responding. Yes, I'm on methylfolate as well. I think I'm going to take tomorrow off to see if I'm being too aggressive in dosing, wanting to heal this stupid PN as quickly as possible (as if I can reverse years of damage in a few months)!

[chrisbuy63 in reply to Simplicity17]

I have stopped the methylfolate now and will go back to folic acid I think as I don't think it agrees with me and I did better on just folic acid. I have been off it for 4 days but still have pins and needles and numbness but it is getting less each day so I hope when it goes I will keep it away by taking folic acid instead, I am only guessing though but it seems to only have come on since changing to methylfolate and I know there can be side effects from taking it.

[Simplicity17 in reply to chrisbuy63]

I can't have any folic acid at all. When you have the MTHFR genetic defect you avoid it at all costs ~ that's why I must take methylfolate instead.

[chrisbuy63 in reply to Simplicity17]

Oh I understand , I don't think I have that as feel better now I am off the Methylfolate. It is all so complicated isn't it? I hope you soon find balance and put this all behind you x