do the neuro symptoms get worse due to the immune system functioning better?

[Caro44]

I am having severe panic that as my immune system gets better that my neuropathy will actually get worse rather than better. I realized that I do not feel it all the way up my legs now bc my immune system was depressed. I do not want to wake it up if I will have 24 hour neuropathy pain! But, please be honest with me, thank you. I would edit my other post but I don;t know how.

[pvanderaa]

Next to the reply button at the bottom of your post there is a arrow pull down with edit as one option.

When you say your neuropathy is worse, is that you are feeling more pain?

Pain is one of the counterintuitive symptoms from the B12 therapy. It occurs because the signal to the brain gets stronger as the nerves heal.

I can sympathize with your desire to make it stop. In my case, it was tooth pain and the injections made it so severe that I made an emergency appointment with my dentist to get the tooth sorted.

You don't have an option like that so it must be very bad for you. Sorry.

I used to tell people that the pain from a stronger signal was an illusion. It takes the brain 2-3 days to recalibrate to the stronger signal. Gentle range of motion exercise helps stimulate the nerve repair. Getting started is the hardest part. I found that physical work or exercise got easier the longer I went and, if I paced myself, I could go all day.

Telling yourself that the pain is an illusion sometimes works as worry and stress make the pain seem worse. If you can relax no calm down and get started with the exercise, the pain melts away.

That said, I could not trick my brain to ignore my toothache and it just seemed to get worse so I know this doesn't work in all cases.

Hope you can find something that works for you.

If the pain comes and goes, start a logbook and try to assess a severity score for each symptom.

Record your meds, food and drink and see if there is a correlation with symptoms. Because the gut is involved there can be a 3 to 48 hour lag between the cause and the symptom.

Panic is one of the psychological symptoms from the neurological damage. Try to score your panic.

Panic and stress consume lots of B12 and the logbook gives you back some control when you understand how you symptoms react to meds, food and B12.

Do you take folic acid supplements?

[Caro44 in reply to pvanderaa]

So as the nerves heal, they hurt more? Is that right? Any idea of how long it could take? And would they hurt all the time or just occasionally? And isn't it too late to heal the damage sometimes? if it was too late to heal the damage, would it still hurt more? I am sorry to bombard you with questions! I am just so so scared, I can not even stand it another minute.

[pvanderaa in reply to Caro44]

See my edits that I added to my previous response.

[pvanderaa in reply to pvanderaa]

I think it works better just to reply each time to add more to a discussion.

[pvanderaa in reply to Caro44]

The repair is very very slow. The pain however should diminish as the brain recalibrates over a 2 to 3 day period.

[Caro44 in reply to pvanderaa]

like years slow or months slow do you think? Couldn't the increase in pain (not from b21 shots but from something else) just be further damage? Everything I have read about small fiber neuropathy is that it can't be repaired if the damage is over 6 months old. Mine is atleast 15+ years plus made even worse 11 months ago. Thank you for your replies. I truly appreciate this forum.

[BethattheBeach in reply to Caro44]

Caro, it is wise to proceed with your treatment and observe your response. Please try to keep that diary of symptoms- mine certainly helped convince my Dr that I needed more frequent treatment. I have had burning feet and pain in my feet for over 15 years too. (Had no idea I had PA!) I certainly enjoyed some moderate relief from the discomfort early in the piece. My GP found it difficult to accept that the injection made my feet feel less painful. She says I'm a 'One off" which I know is not correct because there are lots of us here on this site. I was diagnosed just over 20 months ago and my feet are so, so much better now. If I wear shoes that are too firm I really suffer for days, but if I stick to my soft leather flat shoes I hardly remember I had a problem walking! Make sure you take your co factors to help your stomach improve. (Include potassium(bananas), spinach and magnesium) as well as a good B Complex and maybe some B6. I see a Functional GP here in Australia and he prescribes supplements which have really helped.

Have faith that you will get better. It might just take a little time. bComplex often helps when I'm extra stressed which is,I think, where you are right now.

This group has some amazing people ready to help so if you have any extra questions please keep in touch. We are all different but sometimes our experiences overlap and this is where it is handy to ask your question as the chances are, someone out there will have some hints. Good luck.

[Caro44 in reply to BethattheBeach]

Thank you so much for this. If I'm reading this correctly, you had burning and tingling for 15 years & b12 shots helped the pain even after all that time. Didn't go away entirely but it's better?

I had numbness 11 years ago when I was pregnant and night time twitching for longer. The 24/7 severe pain began 10-11 months ago. If only that improves, I'll be happy. I know my nerves will always be damaged. But if I'm not in pain 24/7, I would love that.

[BethattheBeach in reply to Caro44]

Sorry to have been so long in replying, Caro44. Christmas planning has kept me busy! I wonder how you are feeling now?

Yes, I had neurological symptoms even longer than 15 years ago. We were running our own business and I was working around 90 hours a week, mostly on my feet. I thought the burning feet was simply because I was so overworked. I also suffered from a rash in the form of welts especially at the joints usually in spring. Drs all gave me different answers but it has not returned since my treatment with B12 except during a period where I was off my medication.

I am feeling so much better since I began treatment with injections. Initially they were only once every 3 months but over a year I realised it was like torture waiting so long. My friend taught me how to inject and it really has saved my life! I was developing what appeared to be dementia like symptoms, forgetting words, bumping into doorways, closing doors on my feet etc... eventually, my GP agreed to my si IM because I had kept a journal of symptoms. Also, she could see I was going to continue to inject whether she liked it or not! I reckon you just need to take control of your own life! I would be having trouble walking, speaking and generally running my household if I had not had this diagnosis. I feel very lucky!

I still have bad days but they are very far between and usually mean I need an injection.

I'll be interested to hear how you are going. Merry Christmas!