worse before better?

[Caro44]

Hi, I am having trouble doing searches so I apologize if this has been asked and answered a million times. Do most people just start to feel better upon getting the shots or do most feel worse before better? Increased neuropathy, ringing in ears, headaches, etc. Thank you so much!

[jade_s]

My neuropathy definitely got worse before getting better after starting injections. It lasted about a week or week and a half and then things started to get better. The following few weeks things were mostly better but I ended up needing naps some days (I *never* napped before).

Be gentle with yourself and try to rest as much as possible, I'd say.

[Caro44 in reply to jade_s]

Does getting worse with loading dose mean your nerves are responding in a good way or could it be a bad way? That with more doses the neuropathy pain will only get worse?

[jade_s in reply to Caro44]

Yes it's a good sign. I guess it's normal as the nerves "wake up", and should get better soon as the nerves repair and the brain relearns that those nerves are active. Take a look at the "Related Posts" section on the right side of the screen next to your post (or at the bottom if you're on a smart phone) - you'll see some previous posts and responses on this topic.

I was a bit skeptical as well but things did get a lot better after the loading doses.

[Caro44 in reply to jade_s]

But can the nerves repair if they were damaged a long time ago? And if they can not, will the increased pain persist with dosing?

[jade_s in reply to Caro44]

I'm not a doctor nor a biologist but it seems to me that if the nerves were dead and/or not repairable, there would be no change in sensation. So if you are noticing changes, then likely *something* is happening, and I'd like to think that's repair. Also, excess B12 is not damaging, so I doubt that the extra pain is due to new damage, if you understand what I mean.

I realize it can be very distressing and painful. I got through the first week just by reading everything I could on this forum and the various PA websites.

[Caro44 in reply to jade_s]

ok, I thought that too. Here is why. I was diagnosed w small fiber neuropathy in 2015. I had had it atleast 15 years but prob. longer. My symptoms were my feet felt numb for a short period of time (pregnancy & a few years afterward) but i had periodic limb movement disorder which I now know is caused by nerve damage. I felt no pain during the day in the last 10 years, but at night my nerves would twitch. I did a treatment last year that I was told was nontoxic and would help heal my nerves among other things. Well the pain went from 0 to 1,000. Then it stopped hurting in some places but stayed hurting in others- my feet and hands. It has been about 5 months and those other places still don't hurt. So i thought it helped. But I have since learned that neuropathy pain comes & goes. So it will likely come back. The pain in my feet started last January and now is 24/7 and sometimes up my leg. Since starting b12 it is further up my leg and worse on my legs. I used the same logic as you & that is why I used that treatment. My nerves were coming back! But now about 11 months later, the pain is still 24/7 in my feet, & I have learned this treatment was not safe & was toxic. So, I am questioning that theory that nerves hurt when they heal. Everything I have read recently (when it is too late, i already did that treatment) has said that this pain is from nerve damage and if it was healing then the pain would just subside. I so want to believe it is healing, but I just can't. My leg pain went away for awhile then came roaring back when I took heavy vitamin D & now the b12 shots. Sorry this is long, I am just going crazy.

Thank you so much for your replies. It is so helpful to me

[jade_s in reply to Caro44]

I'm really sorry to hear that, you've really been through a lot.

I've only heard the idea that nerve pain means healing in the context of treatment for B12 deficiency in the first days of treatment (not that I have read a whole lot about nerve issues). I guess the only way to know if it's helping is to keep up the loading doses and wait it out for a few weeks.

I can't really comment on your other treatment nor the Vit D, just sorry you've had such difficulties.

Sounds like a neurologist would be best placed to help you.

[Caro44 in reply to jade_s]

I did use the search function, and spent a long time reading, but, couldn't really find the exact answer. I am sorry I post too much. Thank you for answering

[humanbean]

Hi, I am having trouble doing searches so I apologize if this has been asked and answered a million times.

Sadly, we all have problems with searching on HU. The Search function is absolutely dreadful and HU seems to have no desire to improve it.