how long does nerve pain last?

[Flowerspink]

hi, I’m still experiencing bad nerve pain in my hands , feet and arms from b12 deficiency, had all loading doses and all my levels are now fine.

the pain is so bad I’m still not sleeping, I know lots of people say it’s a healing process but can anyone give me their own time frame experience ?

it’s hard just getting through the day sometimes, pin and needles and burning pain seems to be getting worse not better, any personal stories would be great thanks .

[Nackapan]

All I can say is its early days .We are all led to believe when our b12 levels are replete all will be well.

My symptoms got alot worse before better .

They have improved, some gone,some remain in a milder form.

The healing is not in a linear line.

The longer the deficiency not treated the longer it seems to take .

Thise that had a PA diagnosis early on appear to have faired better with recovery as treatment started earlier rather than Gps searching for other reasons for symptoms .

You need patience.

Also no more b12 bood levels needed.

They mean nothing now.

Then finding your maintenence regime takes time.

Keep a log .

Stick to a frequency to see if any patterns .

You are on the road to recovery.

Keep going with your treatment and monitor iron ferritin vit D folate ect as may well fluctuate .

Again if supplements needed need to be tailored to you

[Wheat]

hello, I have read information and posts that B6 reduces pain, in some cases dramatically. Worth trying. I know this pain is very difficult to cope with, I can only hope this gets better for you asap. Best wishes.

[WIZARD6787 in reply to Wheat]

That has been my experience. Dramatically!

[jade_s]

Hi Flowerspink if you have continued neurological symptoms , which you do, the guidelines call for continued every other day injections until they resolve or 'stop improving'. It does not matter if levels are good or not.

You can use this letter template to request treatment according to the guidelines b12deficiency.info/writing-... see point 1.

Staying on a 3 monthly regimen, which i assume they've put you, will probably result in nerve damage becoming permanent. Nerves will only heal with more frequent injections.

Once you get on that treatment, you'll probably start to see significant improvement within a few months. Healing nerve damage from b12 deficiency is unfortunately a very slow process.

I'm sorry you're in so much pain. I remember those days well.

[Flowerspink in reply to jade_s]

hi, thanks for the reply, I’ve messaged my doctor about having more injections as I’ve still got bad nerve pain , it’s hard to be positive when I’m in so much constant pain and not sleeping .

[jade_s in reply to Flowerspink]

Hi Flowerspink , I can imagine it is hard to be positive and even to think straight in so much pain and being sleep deprived. I'm really sorry.

An alternative, or something you can do in parallel, is do self-injections using ampoules bought from reputable online pharmacies in Germany, like so many of us here already do.

Before I started injections, I had bad nerve burning sensation all over - literally felt like my body was on fire. Real agony. Couldn't get out of bed. So I can imagine what you're going through. The burning was a lot better within just a few weeks, but after the first few loading doses I had already started doing daily injections. The pins n needles and stabbing pain took longer - several months - but that was much more bearable than the burning. All the while doing daily injections. If I had stopped after the first 6, I doubt I would be here to write this.

[brenanddave in reply to Flowerspink]

I am injecting every day and it is the only thing that is making a difference. I can notice improvements, even though new things present out of the blue. But I feel like I am doing the right thing , It gets worse before it gets better. good luck!

[Technoid]

Unfortunately, no-one can answer that

Just know that, unpleasant as the whole thing seems, it is the road to recovery. Nerve repair happens at about 1mm per day so if there is a lot of damage, its a slow, slow process. Getting B12 levels up to and above normal is not the end or the solution, it just begins the healing process which in severe cases can be months to years. But from my experience most will see a turnaround at around the 3 month to 7 month mark.

Sometimes its hard not to think that the B12 is harming you since it only seems to increase pain but all thats happening is that full sensation is coming back to nerves and revealing the damage which you were not aware of before, when there was insufficient B12.

Take the best possible care to look after yourself with diet and supplements, reducing stress, social supports and rest at this point and try not to worry about sleep, it will come in time. Gentle movement is also good for nerve repair and maintaining health and mobility. We've all been on this road and we know how terrible it can feel. You can get through it!

[Flowerspink in reply to Technoid]

thank you for your reply, it’s nice to hear other personal experiences. It’s hard to be positive when I’m In so much constant pain. Wish I could be given a time frame on recovery to keep me going, feels like my whole life has stopped because of the psi I’m in.

[Technoid in reply to Flowerspink]

If the world's top B12 experts were able to advise you they could not give you a definite timeframe. How long did you have neurological symptoms before treatment?

Life does seem to go on pause in this period. There will be some time in the pitstop for a full repair and overhaul! Keep in touch with friends and keep doing things that elevate your mood or make you laugh, even if you don't feel like it, it might sound stupid but mindset makes a big eifference.

[Flowerspink in reply to Technoid]

hi, I only started feeling really bad nerve, pins and needles about 2 weeks before I saw my doctor and she started me on b12 loading doses one week later, so not that long , I was lucky my doctor thought she knew what was wrong with me. My b12 level when tested was 148 ng/L so I was never that low and now it’s 1500 ng/L . Looking back now I know more about it, I prob had symptoms a year before , dizzy, out of breath and a bad lower back , but no nerve symptoms then at all, so this is why I’m confused as to why I’m experiencing much pain now.

[Technoid in reply to Flowerspink]

148 is quite low. I was 210 before treatment with significant neuro symptoms, but not as severe as many others here. The fact that you only had the neurological symptoms 2 weeks before treatment is definitely good news though in terms of recovery. You have reason to be hopeful I had neuro symptoms for quite a while longer but due to long working hours, heavy weightlifting and assurances from my idiot GP that I didn't have a B12 issue, took longer to recognise them for what they were. I have recovered 99.9% and in some ways am stronger now than before the deficiency. I deep dived on nutrition and health research during treatment and have become very dedicated (some would say obsessed LOL) to avoiding further health complications in my future.

[WIZARD6787 in reply to Technoid]

I too am in some ways stronger than ever before. I attribute it to my body not having to fight. Not having enough nutrients which for me was abated but not solved with good diet, exercise, sleep.

[Sleepybunny]

Hi,

I'm sorry to read you're having a hard time. I hope you have some supportive friends or family to talk to. There's always support here.

I would expect you to still be getting every other day loading injections if neuro symptoms present.

See treatment pattern "For people with neurological involvement" in link below.

cks.nice.org.uk/topics/anae...

Maybe you can nudge your GP to check your potassium levels as some people experience a drop in potassium (hypokalemia) when treatment starts.

It might seem strange but I was pleased when my pain and tingling increased after treatment started because I knew the B12 was doing something.

[Sleepybunny in reply to Sleepybunny]

I think you mentioned on an earlier thread that you were on pregabalin.

This is an anti-epileptic drug that is also used for relief of nerve pain.

I have come across articles that suggest that some anti-epileptic drugs are associated with lower B12 levels so might be worth asking GP or local pharmacist about this.

"all my levels are now fine"

Have you seen the actual results?

I always check mine even if told by GP that everything is fine.

[Flowerspink in reply to Sleepybunny]

hi, thanks for the reply, I do have all my results online and they are all now as they should be. I have just done an econsult asking my doctor to get back to me in regards to having every other day injections until no further improvement.

I just feel I’m going backward in my pain recovery, my feet and ankles throb and burn in pain. My hands and fingers are sore to touch with burning pain. On my left leg I have a really sore patch.

I am on pregabalin, naproxen, dihydrocodine and mirtazapine.

They do help a little but I still haven’t managed more that 2 to 3 hours sleep in 7 weeks now, which is obviously not helping with the way I’m feeling.

Just wish I could have a time frame for recovery to keep me going and feeling more positive.

[Sleepybunny in reply to Flowerspink]

I found that taking a magnesium supplement with the RDA (Recommended Daily Amount) in it improved my sleep.