I had small fibre neuropathy type pain all over my body which started in 2018 after being ill for a year already with chronic fatigue, chronic dryness, and more. I became gluten intolerant also and b12 deficient. In late 2020 the b12 injections cleared up the chronic fatigue quickly and it took a few more months but as long as i kept injecting once every 3 weeks my SFN pain would never come back. Not in the slightest. A month ago for absolutely no reason as I was preparing to fly abroad this Easter (nothing booked) to celebrate the years of being pain free (and I am desperate to see my friends abroad and live again) the pain returned totally. In the past if I felt any tingles after 3 to 4 weeks a simple b12 injection meant they would disappear within hours and I was fine for another month. Now this no longer works even when upping b12 to every other day. It helps for some hours but the pain just springs right back very soon after (hours).

Pain is in inner forearms, legs, and upper back in part.

My diet hasn't changed. I take co-factors, and I have been going to the gym as advised for 2 years. I am careful there too.

Why has this pain come back?! Why is the b12 not keeping it away? There could well be an entrapment in my spine or under muscles. I have had trapped nerve in arm, major stiffness in neck, and a feeling of sharp pain and entrapment sometimes in mid left spinal area.

This might not even be it but I am struggling to see why this is all back.

Suffice to say my mental state has massively deteriorated.

--to your nerve pain, why not try taking a B12 supplement, such as 1000-5000mcg (1-5mg) of methylcobalamin, several times a week or even every day?

Much more convenient, and likely much less expensive, than injections--and the dosing should provide, though 1-2% passive absorption, enough B12 to maintain stores, even if you have pernicious anemia or some other absorprtion issue.

Hi Johnny,
I'm sorry that you are struggling with pain at the moment.
I was wondering about your first posts where you mentioned Sjogren's diagnosis (Sicca I think you said).

I don't know too much about Sjogren's except that I know that people experience "flares" and that neuropathy can also be involved. So basically I am wondering if that diagnosis still stands and if you received any treatment for Sjogren's at all and if it helped your neuropathy at the time.

Hello Lara

I was told ages ago I don't have Sjogrens and had a negative biopsy. I have absolutely no idea anymore. I have now permanently switched off my mobile phone and basically given up on work, everything.

I had to treat myself in the end after finding out I was grossly b12 deficient. This cured my chronic fatigue syndrome. I also became gluten intolerant. The b12 also cleared up the nerve pain. Now it is all back and there is no support and no help and no sign of why it is back.

I was due to leave the UK for 3 months from today to be immersed in culture and the sun as I have been DESPERATE to do for 6 years. Now I am trapped here again in an attic room like a loser.

I am angry and disgusted I have to go through this again.

Have you had the possible entrapment followed up on?
That should be the next step.. To rule it in or out..

You might find helpful self help videos on you tube for exercises if it is a soft tissue entrapment..

Maybe even Trigger points, they can cause a lot of pain and referred pain..

This SFN stuff seems to have a mind of its own.

Are you doing any better? I really hope you are seeing some improvement.

I know I am about two months into a major flare up out of the blue as well.

I know the toughest part in all of this is not really being able to get many definitive answers.