Vitamin B12 deficiency and small fiber neuropathy

@marcia115 no, I have seen no side effects from B12. My B12 level is over the limit and my neurologist says there is no danger of high amounts and to keep supplementing.

Hi @rwinney thank you so much for checking in. Yes, I’m still treating the Bartonella. I had 8-9 days where I did really well. I had symptoms each day but very mild. However the last three days have been terrible with near constant burning and tingling. Really ruined the weekend. I’m not sure why it goes so up and down like this but I hope it’s a sign of healing. I had a follow up with my neurologist and am doing a skin biopsy in a few weeks. He feels confident that it won’t progress but also wouldn’t promise anything as far as recovering. But I’m trying to stay hopeful. How are you doing?

Hi @marcia115. How has B12 supplementation been going for you? Are you taking orally or by injection?

@mikeg0822 Hey Mike, good to hear from you! I'm doing well, it's nice of you to ask. Ah yes, the rollercoaster of flares. Sorry about your weekend being ruined. The good news is that prior, you had a decent stretch and that tells you decent stretches are possible and will return. The burning does suck though. My legs used to feel sunburned and I could not have clothing touch them. I remember just focusing on my kids or family for distraction and learning the great art of ignoring. How do you manage the discomfort? What distractions help you?

@rwinney I hope to learn the art of ignoring! I had to take a sick day today just to focus on myself. I’m having trouble managing the discomfort. I haven’t really found anything that helps with relief on the bad days (mostly tried lidocaine patches). I try to keep events in the future in mind and hope things will be better by then. I still have hope for recovery but I guess I didn’t expect the bad days to be so bad. I thought they would improve at least a little bit.

Try not to get down on yourself for taking a sick day to focus on yourself. That is commendable. Trying to push too hard can create stress and stress exacerbates symptoms. Does your employer have full knowledge of your situation?

Have you tried topicals? Aspercreme Pain Relief Cream with Lidocaine may help sooth for a while. Also, some say Vicks Vapo Rub helps.

@mikeg0822
I have had neuropathy for almost 40 years and the pain can be excruciating. My doctor had me on the fentanyl patch which did help although it didn’t get rid of it and I also took the maximum dose of Neurontin (Gabapentin) which didn’t help my seizures or the neuropathy. Thankfully, now I only have numbness from my feet up to my waist which the doctors believe caused my ED. Neuropathy is indeed, wicked as it can cause other serious problems. Although it probably wouldn’t be your choice but have you thought about asking your doctor for an opioid for the pain? Have you tried Gabapentin or Lyrica. Another epilepsy medication that may be helpful is Tegretol. I take 1000 mg a day for seizures and I’m wondering if that’s why my neuropathy went from all the painful sensations to numbness. Of course, what works for one may not work for another.
Hope you find a suitable answer to your painful condition soon.
Jake

I take the pill and put it under my tongue
, it takes about an hour till it is gone, that is how the doctor said to do it.
I guess it works better that way.

@jakedduck1 i have not tried any medications besides amitriptyline for a short while. I may began to look at them. Thank you for the advice!

There is good reason for hope in your situation, seems they caught it fairly early. Mine was not Dx'd for about a decade despite seeing 3 PCs, a cardiologist, a rheumatologist, 2 neurologists, 3 gynecologists, a carpal tunnel specialist, and 10 weeks of occupational and physical therapy with surgery scheduled for carpal tunnel. I left that clinic (TVC in Vancouver Wa) at that point and went to MDVIP. Dx'd first day there. I've made good improvements but the damage was too much. I'll never be able to rollerskate worth a💩again, which is my happy place, my blood pressure and heart rates are both in the stratosphere from autonomic damage. Balance is effed up. Walk like I'm drunk all the time. Might have to give up motorcycle and quad riding, my other happy places. Just too painful and a little dangerous bc of balance and weakness issues from the deficiency.

You're gonna get much better maybe even 100% better but don't EVER stop the b12 treatments you'll have to be on for the rest of your life. Also research folate (helpful) and be wary of b3 and b6-- do not get to much of those. If you're really really brave there is a supplement called lions mane that is supposed to help repair nerve damage, just do your research and get good quality non- contaminated lions mane.
Best of luck to you my fellow b12 warrior.